ublic health alert · course in forest lake, minnesota, proving her little idea was worth all the...

PUBLIC HEALTH ALERTVol. 2, Issue 7 Investigating Lyme Disease & Chronic Illnesses in the USA July 2007

PPuubblliicc HHeeaalltthh AAlleerrtt wwwwww..ppuubblliicchheeaalltthhaalleerrtt..oorrgg PPaaggee 11

In This Issue

Editorials &Opinions

You Don’t LookSick!p.2

SusanWilliams:7 Decades

Elapsed BetweenInfection and

Diagnosisp. 3

TeenPerspectives:Laura IronsSay “Cheese”

p. 4

L.E.A.P Arizona Lights torchat the CDC in Atlanta.

The US May be ConductingGerm Warfare Studies

p. 5

Dr. KentHoltorf

Why Doesn’tMy DoctorKnow This?

p. 7

Dr. JamesSchaller, M.D.Personality &

CharacterFlaws Causedby Infection &Inflammation

p.8

MarjorieTietjen

Book Review:Nutrition &

PhysicalDegeneration

p. 15

Sue VoganInterviews:

Dr. BrianFallon, MD.

p. 6

by Marina AndrewsLymeBlog News

Lexington, KY- Lastfall one tiny Lyme disease-suf-fering person, Jill Kuschel, toldthe Minnesota Lyme ActionGroup, "I want to have a 5Krace and walk to raise moneyfor Lyme disease. I know noth-ing about holding a 5K but Ican call this lady who headsone every year. What do youthink?"

On Saturday, May 5th,only seven months later, Jillwatched hundreds of walkersand runners fill the 3.2 milecourse in Forest Lake,Minnesota, proving her littleidea was worth all the effortthat went into the MinnesotaLyme Action Group's first"Walk--for someone whocan't/Run for Research".

Jill shouldered much ofthe organizing work for theLyme-Walk fundraiser to bene-fit the Minnesota Insect-BorneDisease Education Councileven though five other womenvolunteered to be on theevent's planning committee.

Like Jill, four of thefive other planners suffer fromLyme disease. At times, theLyme-caused limitations ofcommittee members madeplanning the Lyme-Walk feel

like a walk in the dark. Notone of the Jill's five volunteershad ever organized a fundrais-er.

I was one of those vol-unteers but I was completely in

the dark on how to raisemoney.

"Tap the people youknow in the area for dona-tions," the committee told me.

Okay. I could do that. If

I had to embarrass myself withmy unpolished donation-seek-ing performance, I'd at leastknow the people I'd be stand-ing in front of, blushing andstammering.

First stop, my insuranceman. He wrote out a check onthe spot! Next stop, the galwho used to cut my hair twentyyears ago, she owned her ownsalon now, which looked pros-perous. She remembered meand offered a duffel bag full ofhair care products. Anothersuccess! What about the veteri-narian who'd cared for my ani-mals for more than twentyyears? He wrote out a checktoo.

Feeling pretty goodabout myself and my fund-rais-ing capabilities, I wonderedwhat more I could do. With thephrase "walk for someone whocan't" stuck in my head Ithought of friends like Tory inMadison, Wisconsin whosechronic Lyme disease keepsher in a wheelchair she maynever leave. Was there a wayto show the world, or at least people in Forest Lake,Minnesota, that thousands ofpeople like Tory endure pro-found crippling effects ofLyme disease?

For many home-bound “Run”...cont’d on pg 12

Walk For those Who Can’t,Run for Research

Minnesota Group Holds 5K Run for Lyme Disease Awareness

Marina Andrews & Lyme-Walk organizers in Forest Lake, Minnesota pur-chased bulk copies of Public Health Alert for walkers, runners, and anyonewho attended the May 5th event. One organizer said, "We liked the potpourriboxes of back issues. Every article of every issue is still current in Lyme dis-ease. People were thrilled to have so much information given to them forfree."

Wisconsin Lyme Doctor Under FireDuring Governor-Proclaimed

“Lyme Disease Awareness Month”by PJ Langhoff

Three Lakes, WI - Hedrives an old pickup truck,wears cowboy boots and wouldrather spend time in his cabinin the woods than in the publiceye. When he drives throughtown, everyone who is anyonewaves to the man, a well-known, good-hearted "old-school" country doctor. When aLyme patient could not affordthe cost of a certified serviceanimal, the physician went togreat lengths to facilitate thecertification for the patient'sdog "Jetta" after the animalunderwent appropriate training.

Physician GregoryHoffmann has dedicated hisentire life to serving patients innorthern Wisconsin in generalpractice, for pain management,and for the last several years,for the treatment of Lyme dis-ease. His fees would make anymainstream physician blush,often providing services probono, and even meeting out-of-state patients at a motel whenthey were too sick to travelfurther.

Recently, despite cur-rent personal problems withthe state, this dedicated doctordrove several hours over theweekend on a holiday to per-sonally visit one of his patients

following her abdominal sur-gery, for no other reason thanbecause that is the kind of doc-tor he is. Like his Father andGrandfather before him, whowere both physicians, this doc-tor derives his satisfactionfrom being able to help cure illpatients, many of whom havebeen turned away by tradition-al clinics, especially for Lymedisease, and many who haveprecious little more than"thanks" to offer him. Hispatients are not only local, butthose who make a pilgrimagefrom other states in order toreceive the type of compas-sionate, individualized care inthis evolving area of medicine,that is often missing from larg-er practices.

As a reward for a life-time of low fees and dedicatedservice, the "thanks" he isreceiving of late is comingfrom a different arena."Country doc" Hoffmann, is inthe process of being investigat-ed by the WisconsinDepartment of Regulation andLicensing (and ultimately) theWisconsin Medical ExaminingBoard for alleged complaintsthat seem a pretext for attack-ing Dr. Hoffmann's treatmentof patients with Lyme disease.The investigation is all themore confounding when you

consider that just weeks ago,Wisconsin Governor Jim Doylesigned a proclamation declar-ing the month of May, "LymeDisease Awareness Month" forthe state. The prosecutingattorney in the case againstHoffmann is Arthur Thexton,known for prosecuting "alter-native" medicine practitioners.

The pretext involvesHoffmann's decision to deny a

former patient a prescriptionfor controlled substances uponconcluding that the patient wasabusing narcotics. Apparentlythe former patient, through anattorney, contacted Thextonsaying, "We're going to gethim." Either unaware or inspite of this motivation,Thexton decided to try andmake a case out of the allega-“Lyme Doc”...cont’d on pg 13

LauraZeller

Diving For aCure: Part 2

HBOTTherapy

p.6

ObituariesGay Butler, Tx

Karen J. Rose, TxJimmy Duarte, Mass

p. 18

Nation Wide Support Group Listings

ALS/ Lou Gherig’s diseaseMultiple Sclerosis

Lyme Diseasep. 19

EDITORIALS & OPINIONS

PPaaggee 22 wwwwww..ppuubblliicchheeaalltthhaalleerrtt..oorrgg PPuubblliicc HHeeaalltthh AAlleerrtt

Public HealthAlert

The PHA is committed toresearching and investigating LymeDisease and other chronic illnessesin the United States. We havejoined our forces with local andnation wide support group leaders.These groups include the chronic ill-nesses of Multiple Sclerosis, LouGherig’s Disease (ALS), Lupus,Chronic Fatigue, Fibromyalgia,Heart Disease, Cancer and variousother illnesses of unknown origins.

PHA seeks to bring informationand awareness about these illnessesto the public attention. We seek tomake sure that anyone strugglingwith these diseases has proper sup-port emotionally, physically, spiritu-ally and medically.

PHA StaffEditor: Dawn Irons

Assistant Editor: Brad IronsAdvertising Manager: Laura Zeller

Distribution: Rhonda Cope

Contributors:Donna Reagan,

Ginger Savely, FNP, Marjorie TietjenScott Forsgren,

Dr. J David Kocurek, Susan Williams, Laura Zeller,

Sue Vogan, PJ Langhoff, Dr. James Schaller, M.D.,

Tami Duncan, Linda Heming,Laura Irons.

Website:www.publichealthalert.org

e-mail:[email protected]

Donations:If you would like to make a dona-

tion to PHA you may do so throughPaypal. Please send the donations tothe following address:

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Disclaimer: This newspaper isfor informational and educationalpurposes only. The owners, staff,writers and contributors of thisgroup are not doctors (unless identi-fied as such in their title). Articles inthis newspaper are not intended toprevent, diagnose, treat or cure dis-ease.

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by Dawn Irons

I can't tellyou the numberof times I haveheard the wellmeaning senti-ment, "You

don't look sick!" It used to frus-trate me. Now, I have learnedto look on the bright side…youknow, when you look out thewindow and realize it is only atornado, not an F-5 hurricanelike Katrina that is beatingdown your door! I am learningto find joy in the fact that it isonly a tornado. The fact that Idon't look sick comforts megreatly! Imagine if I lookedlike what my body was physi-cally feeling. On secondthought, don't… that's notuplifting when I really thinkabout the pain. I shall simplyrejoice in the fact I don't look asbad as I feel!

As I write this article, Ihave a very heavy heart. In thelast month, two Lyme patientsin our DFW Metroplex passedaway. Much like AIDS, youwill not see "Lyme disease" asthe cause of death on their deathcertificates. Lyme and AIDSboth systematically destroyone's immune system to thepoint that body's defense systemis so suppressed that the com-mon cold can bring the final

blow of death. And when thathappens, it is the wimpy oppor-tunistic infection that gets totake the credit for the cause ofdeath. Every time the officialcause of death is listed as"organ failure", or "pneumonia",or some other symptom ratherthan the overall condition suchas AIDS or Lyme disease, welose the ability to really put aface on the disease and raisepublic awareness that these con-ditions are ruthless killers.

It is all the more mad-dening that Lyme disease is sovery treatable if caught early.The war that is raging on theissue of "standard of care" isdisheartening when people aredying for lack of proper diagno-sis and treatment of the disease.The leading "standard of care"is being investigated by theConnecticut Attorney General'soffice for violations of anti-trustlaws -meaning they are beinginvestigated for trying tomonopolize one way to treat thedisease; effectively shutting outany competitive theory as beinga viable option as they laugh allthe way to the bank with fatwallets….but I digress!

When I first met myfriend Gay, we sat in a coffeeshop in Fort Worth and spokeabout both of our recent Lymediagnoses. She shared how shehad been battling health issues

for years. She told me of howshe had been misdiagnosed withMultiple Sclerosis, and had alsobeen diagnosed with ALS. Asshe continued getting worse,they also discovered the borreliaspirochetes in her system andshe was given a Lyme diagno-sis. She was an amazing per-son, full of spunk, faith andhope.

When I first started thePHA newspaper, Gay was oneof my first financial supportersto help get the premier issue offthe ground. To look at Gay, andher infectious smile, you wouldnever know she was as gravelyill as she was. She didn'tLOOK sick! She had the radi-ance and glow of MissAmerica! It was only her limpand walking cane that clued youin that there was something notquite right. She looked wonder-ful!

I saw her at one of thesupport group meetings and shehad mentioned that her walkingwas getting more and more dif-ficult. Later she had emailedme that she had been resignedto a wheel chair…all the whileshe never looked sick. Looksare deceiving.

I never saw Gay again.I remember the last time I sawher. She was sharing with mehow much she loved her hus-band and children. She shared

how her children's friendswould call her mom…and therewere always extra kids aroundthe house. She absolutely lovedbeing the neighborhood "Mom".She told me how she loved herChristian family at the CowboyChurch. She was so very muchalive! One would never knowby looking at her that she wasso very, very sick.

Maybe next time weencounter someone, like our-selves, who is battling a chronicillness, we can give them aword of encouragement thatonly someone who has walkedin their shoes can truly under-stand. Next time, I see myfriend Donna, who also suffersfrom Lyme, I think I will giveher a big hug and tell her, "Yourbeauty disguises the battle Iknow you fight daily. I knowthe pain you struggle with,though others cannot see. I amencouraged to see you keepfighting. It blesses me to knowsomeone so strong and coura-geous as you."

I just know in my heartthat it would mean so muchmore to her than one more per-son telling her , "Well, youLOOK good!" …and then dis-miss the daily battle as if thereis no real battle at all. Yes,looks are deceiving. phapha

You Don’t Look Sick!

Letters to the EditorDear Editor,

PHA subscribers mayknow an experienced LLMD,Dr. J. Gregory Hoffmann, isunder investigation by theWisconsin Department ofRegulation & Licensing (DRL).The initial investigation beganafter Dr. Hoffman refused toprescribe an opiate prescriptionto a former patient.Subsequently, the individualfiled a complaint with the DRLafter consulting an attorney.Incredibly, the DRL is sidingwith the complainant!

The complaint appearsto have turned into an investiga-tion of Dr. Hoffman's "treatmentmethods." No one in the Lymecommunity believes the investi-gation to be anything but adirect attack against the ILADS-based Lyme disease treatmentmethods employed by Dr.Hoffmann. He has decided tochallenge the treatment stipula-tions endorsed by the statebecause he knows his patientswould never receive adequatetreatment under the conditionsthe state wants to impose.

We're in awe of Dr.Hoffmann's courage and com-passion. His multitude ofpatients and the nation-wideLyme community will be withhim every step of the process.We wish to thank everyone forthe enormous outpouring ofsupport. Doc is literally speech-less by the enormity of yourcare for his plight.

We are not going to sitidly by and watch one of thenation's finest LLMDs be rail-roaded out of his practice. In thetwenty-four hours after Doc'splight was made public, theWisconsin Department ofRegulation & Licensing wasswamped with correspondenceon Doc's behalf. The lead inves-

tigator said he was inundatedwith calls, faxes, and e-mails.You bet he was! What did thisguy think? That people wouldgo shuffling off in a corner anddie without access to adequatemedical care? Over two hundredLyme-related groups were noti-fied of the investigation of Dr.Hoffman and the informationwas posted on seventy-fiveInternet bulletin boards. We can-not thank you enough for yourassistance and overwhelmingsupport.

This is just the begin-ning. We're getting organized.Folks are working tirelessly onthis matter. Elected officials andothers in key governmentalpositions will hear our voicesresonate. Resonate they will,down the halls of state houses,governor's mansions, stodgy andantiquated medical societies,medical board backrooms andnews bureaus.

They will learn as youhave: Dr. Hoffmann takes allcomers. No child is ever denied.Those without the ability to payare treated the same as thosewho can. And those who arewheelchair bound, have majororgan dysfunction, debilitatingpain, severe heart damage, andmental deficiencies from borre-lia infection come with the hopeof regaining their lives. Scoresof people have come to Doc'ssmall-scale practice in theserene woodlands of northernWisconsin. Medical outcasts,the forgotten, the disavowed,make their pilgrimage with bro-ken bodies and mainstreammedically-induced broken spir-its for what they believe is theirlast chance at salvation. Somepatients have been so rackedwith the pain of Lyme diseasethat they can't make the journeyin its entirety. It matters not,

Doc fires up his pickup anddrives down to meet them inwhatever roadside motel theyhave sought out as a place ofsolace.

PJ Langhoff enticedGovernor Doyle to proclaimMay as "Lyme DiseaseAwareness Month" inWisconsin. To celebrate, thestate of Wisconsin wants to dis-card its most Lyme-knowledge-able physician and cast Lyme-infected patients to the wind.

No. Not one more.

Sincerely, Mike NickelWI Lyme [email protected]

Dear Editor,My sister Whitney has beenreally close to me until she gotLyme disease. We were bestfriends! When she got her dis-ease I was very scared. One dayshe was lying on the floorscreaming and we rushed to thehospital. I was crying more thanI ever did in my life. I felt thatshe was no longer alive becauseshe would be sleeping nonstop.When she was awake she wouldcry her heart out because shewould be in such pain, and Iwould be very scared! Shewould call for my mom whenshe was sleeping and one timewe missed the phone call.Whitney was crying for me andmy mom. We would try to gether to come upstairs but her legshurt too much. She would walka little and then she would falland start to make a soft cry.When we got her to the top ofthe stairs she would start to faintor black out. We would make many trips todifferent places trying to find agood doctor that would treat her,but all of them said that she was

going out of her mind. When Iheard the first doctor say that, Ifelt like someone stabbed me inmy stomach. I knew she was notgoing crazy but I still had a feel-ing that it wouldn't be long untilshe would die. I would thinkabout it every night and start tocry even if I was at a friend'shouse. I don't really talk about itmuch so they don't know howworried I was. But now, eversince she saw Dr. Hoffmann herlife has really improved! Shehas been going back to schooland been my best friend againlike she used too!Really think about this …andthink how it would be like beingreally happy. Then once youturn six you see your best friendscreaming in pain. Every thinghas been hard for my sister forso many years. You can't evenimagine how hard it was for mysister to go through her life inpain… nothing but pain! Nowshe has a life and hope. Pleasedon't let them take it from her!If Whitney is happy, then I amhappy!

Respectfully,Rebekah Frank 10 Years OldLindstrom, MN

[Rebekah, I am very proud ofyou for having the courage tospeak out on behalf of your sis-ter. I am very committed tostanding along side of you andhelping those who cannot speakfor themselves. Together webring awareness of Lyme dis-ease to many people. Thank youfor being so brave and coura-geous. I believe Whitney will getwell with the medical expertiseof doctors such as Dr. Hoffmannwho go the distance and treatthis disease until the symptomsare in remission! Dawn]



Seven Decades Elapsed BetweenInfection and Diagnosis:

Harriet Bishop's Storyby Susan Williams

Harriet Bishop was justsix years old, living in a tent allsummer in northern Arizona'scool pine forests with her fatherand brothers, when she wasfirst bitten. "I remember myparents were very upset uponseeing a 'bulls?eye' rash on myback," she recalls. "My olderbrother even remarked that hecould use me for target prac-tice! It turns out that the tickhad worse repercussions thanan arrow might have had." Theyear was 1934, a virtual DarkAges in terms of tick-borne dis-eases.

That winter, the littlegirl was terribly ill with nausea,vomiting, digestive disruption,and pain. "After that, I was aweak child and couldn't keepup with my peers in any sports.From that time on, I had painfulsymptoms throughout my life-time, and I just managed it,thinking everyone had theseproblems," she admitted. Itwould not be until the year2005; 71 years later that Harrietwould be properly diagnosed.

In spite of her illness,this mother of five has had anadventurous life.

In the 1940s, sheworked various summer jobs inRocky Mountain National Park,and Big Bear Lake, California."I removed numerous ticksfrom my body during thattime," Harriet remembers. "In1954, I was bitten probably ahundred times all over my bodywhile spending a night in acommunal hut half way up theside of Mt. Fuji in Japan wherewe lived."

In 1956, she moved intoa house in Panama City,Florida, where she experiencedoverpowering spells of nauseaand vertigo, anduterine bleedingthat requiredsurgical inter-vention. "Thathouse was laterdiscovered tobe completelyinfested withticks. Theywere so tiny asto be nearlyinvisible but,once noted,they were seento all. Theywere crawlingup the interior plastered wall,thousands of them all at once!"

In the early 1960's,Harriet and her family lived inGermany. "We hiked the BlackForest, kicking throughankle?deep leaves in the fall.Only a few ticks," she jokes.

By 1968, she hadmoved onto a ranch in southTexas. "We raised dogs of sev-eral breeds as well as the cattleand horses common to Texasranches. So many deer roamedthat three orphaned deerbecame our pets and ran withour dogs.... ticks were every-where and on every one of us."Although Harriet does notremember seeing a rash at thistime, her hands began to devel-op strange lesions that would

not heal.In 1986, another move

took Harriet to Vancouver,British Columbia. She partici-pated in swimming teams, iceskating groups, cross-countryski groups, and hiking groups."In 1990, after a hike in a bogthat turned into a scramblethrough a thorny glacial mead-ow, I noted scratches all overmy body from the barbs that

went through my Levis. On myright upper thigh the next weekthere was one last remaininglesion that didn't heal. It wasreddened around it, and had alittle thing in it that I thoughtwas a thorn tip. I couldn't get itout with tweezers because itwas embedded so deeply. Thereis only a tiny scar there now.There was another on my rightheel and another on my leftankle that now are hardenednodules. I believe all three weresick ticks."

In July 1991, after aperiod of stress from the illness

and death ofher mother,Harriet beganexperiencingsevere insom-nia. "My heartpounded, mybody and brainwere on over-drive, tooexhausted fornatural sleepand tooexhausted to doany physicalwork without agreat deal of

help. I now know that feelingwas caused by exhausted adren-als and, though I have hadtreatment for it, it still returnsin times of great stress."

Then came the severewidespread pain and stiffnessthat the doctor could not treat.Puzzled, he put her on bed rest.Harriet's search led her to twen-ty-six different doctors of vari-ous specialties. "Some werenice and tried their best, to noavail, but most 'blamed the vic-tim'," she noted.

As an example, sherecounts the story of her visit toa rheumatologist who dismissedher from the office, telling herto come back when her handswere well. "She refused to seeme for joint pain and muscle

spasms even though herrespected mentor had referredme to her. I became indignant,and told her I couldn't find any-one who could help?? Whowould she suggest!"

The doctor gave Harrietthe name of an infectious dis-ease specialist. "This doctorcondescended only to look at me standing up in the waitingroom and, in the presence of all

the other patients, tell me rude-ly I was in the wrong kind ofoffice! Once again, I askedwhere I should go."

From there, Harriet wasreferred to a well-known der-matologist. "For nearly a yearthis arrogant guy refused to lis-ten to any input from me, but Igave him lots of time to proveto myself that I was not just'doctor?hopping.' He refused tobelieve and couldn't see that thesteroid creams were making itall worse, causing an over-growth that buried the infectionfar below, insuring the acceler-ated pain and deepening symp-toms. On our final office visit,which I came to call 'confronta-tions,' he said that I was caus-ing it myself and I needed apsychiatrist! This time I didn'tbother to ask for a referral," shenotes dryly.

At one point, she had anopportunity to consult a neu-ropsychopharmacologist whohad written books onfibromyalgia and chronicfatigue syndrome. "I was treat-ed in his office all day for asolid week, twice within sixmonths. During these all-daysessions he tried different dosesof varying drugs to try to findwhat helped, and to try to deter-mine what was wrong." Someof the IV's that he administereddid help relieve her pain, as didsome trigger point injectionsthat were also effective inrelieving muscle spasms.

"At the end of our ses-sions, he said he did not knowwhat was wrong with myhands, but he declared the prob-lem was not 'all in my mind'nor was it within my brain,except insofar as the immunefunction had failed to preventmy body from fighting off thisinfection. As we parted for thelast time, he gently shook mywhite-gloved hand and said thatI needed a better dermatologist!

I never did find one."Meanwhile, Harriet's

husband, who holds a Mastersdegree of Public Health, and isintensely interested in epidemi-ology, was encouraging her tomake slides of the things thatshe extracted from her fingers.She describes, "My local gener-al practitioner tried everythinghe knew, and even used hisown microscope to examine the

various kinds of strange objectsthat came out of my fingers.There were jagged red crystals,black seed-like specks and longundulating fibers, and shapeslike miniscule cockroaches, allhairy. My general practitionerapproved when I added to myhealth care team an internistwho was skilled in alternativemedicine, including homeopa-thy and energy medicine. Thisinternist came close when heconsidered and prescribed for 'aform of rickettsia' but he appar-ently did not think of Lymespecifically."

"I do nothave to tell youhow debilitatingthe conditionwas, bleedingand oozing andmaking mosthand workimpossible,even to turningthe car ignitionand openingdoors. Sewingand playing thepiano wereimpossible foryears, as waswashing vegetables and dish-es."

In March 2005, Harriet'sdaughter happened to see a tel-evision clip featuring a Lyme-Literate Medical Doctor(LLMD) and microscope slidesthat looked just like Harriet's."The narrative startled me withthe statement that most patientswith Morgellons also had Lymedisease!" she exclaimed. Withthe blessing of her local generalpractitioner, Harriet made anappointment with the LLMD.

By May 2005, Harriethad tested positive for Lymedisease, Babesiosis, Bartonella,Ehrlichiosis (now calledAnaplasmosis), andMycoplasma, and was alsodiagnosed with Morgellons.

"My course of action seemedclear: put myself in the handsof the LLMD and comply fully.I resolved to do whatever ittook, for however long it took."

When asked about herprogress, Harriet responds withan energy and vibrancy thatbelie her 78 years. "It is twoyears later now, and I no longerhave constant nausea, frequentdebilitating dizzy spells, andexhausting fatigue. But best ofall, my fingers are healing.They are 85% better."Subsequent Western Blots ofHarriet's blood are now nega-tive for Babesia, Bartonella,and Ehrlichiosis.

"Now I can race mygrandchildren in our kayaks onthe Guadalupe River," shesmiles.

Harriet credits severaltherapies to helping her on herjourney towards wellness."The antibiotics to get at theLyme spirochetes and the bloodcell parasites, and the antipara-sitics for the inevitable infesta-tions of the worms we all seemto have. Also, an over-the-counter (OTC) topical ointmentwith painkilling ingredientsalso helped with softening theskin; Mary Kay ExtraEmollient Night Cream; andAyurvedic topical oils fromShankara.com. Daily very deepbreathing to maximize oxygenin the tissues; yoga to induce adeeper, more healing level ofsleep and lessen musclespasms; and deep sleep, howev-er you can get it. And I simplymust put in a plug here for aproduct that allegedly increasesthe body's supply of glutathioneby 300%! It is the Skin CarePatch by LifeWave, a nanotech-nology company. And yes, itdid get worse before it got bet-ter; so don't get discouraged

when the con-dition seems toworsen. Youwill be on theright track.Persistence iskey."

Harriethas put herpersistence andknowledge touse, serving onthe Board ofDirectors ofthe newlyformed TexasLyme Disease

Association since September2006.

"If Lyme disease can beprevented in children, or evendiagnosed and treated sooner,they will have more opportuni-ties throughout their lifetimesfor healthful activities and abetter chance to reach their fullpotential," she asserts. "I thinkit is the responsibility of thoseof us who have 'been there' todo all we can to spread theknowledge we have gainedthrough our experiences inorder to attain that goal for ouryouth." phapha

"If Lyme disease canbe prevented in chil-dren, or even diag-nosed and treated

sooner, they will havemore opportunities

throughout their life-times for healthful

activities and a betterchance to reach their

full potential,"

"I think it is theresponsibility of

those of us who have'been there' to do allwe can to spread theknowledge we havegained through ourexperiences in orderto attain that goal for

our youth."



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Say Cheese

There is anew drugbeing targetedat youthcalled"Cheese". It is

affecting kidsas young as elementary andmiddle school. It's a brownpowder and is considered tolead to other street drugs, likeheroine and cocaine. It hasmade a name with high schoolkids across the country. It ismade by combining Tylenol PMwith heroine. Considered cheapand affordable for most kids,some use it at school for onesniff to get a high, while othersare found sniffing it from emptyballpoint pen casings.According to Wikipedia,"Cheese may contain a 2% to8% heroin purity level; an 8%purity level is, in some cases,enough to start an addiction in auser of Cheese. The powder issnorted instead of being inject-ed. One tenth of a gram, whichis one "hit", costs only $2 onthe black market. One quartergram costs $5," so it is easy tosee how they are targeting kidsand getting them hooked due tothe low cost of the drug.

It is so highly addictivethat the withdrawal symptomsstart to appear as early as sixhours after use. Because it is socheap, parents now have to seekdrug rehab for their kids. OneDallas treatment center said itsnormal age range for drug rehabclients was 15-17 years old.Now that Cheese is on thestreet, they say they are gettingkids admitting themselves intotreatment, along with parentalrequests for treatment in chil-dren as young as 11-13 yearsold. It has already claimed thelife of a 15-year-old middleschool student, and 18 others aswell.

Dallas IndependentSchool District (DISD) hasalready had over 75 cases ofCheese on school campus thathave been caught. This doesnot include the ones they don'tcatch, or the ones that kids dowhen they are at home or atparties. Many kids have died ontheir first try, without beingaddicted or ever having usedCheese. This new street drug isa killer and they are targetingthe children and the youth.

The problem is becom-ing wide spread across thecountry. It surfaced on thestreets in 2005. It initially start-ed in Dallas but has now movedon to the rest of the country.Authorities say that the heroineis being smuggled over the bor-der and falling into the hands ofteenagers. They buy the tar-heroine off the street, lace itwith Tylenol PM, and then sellit at school.

It's not a far leap frombeing addicted to Cheese tobeing addicted to heroine, sinceCheese is up to 8% heroine. Ithas been labeled "StarterHeroine" by police.The symptoms of Cheese usageare euphoria, disorientation,

“Say Cheese”...cont’d pg 12

The TeenView

Say “Cheese”

by Laura Irons

More Letters to the EditorDear Editor,

My name is Whitney, Iwas born on August 6, 1991. Iwas breach because I flippedupside down, but this was onlythe start of my problems. WhenI was around two years old myparents divorced and we movedto a small apartment where justmy mother and I lived until shemet my step-father. Around thisage I started getting constantsymptoms that were minor atthe time, but didn't feel minor.

The symptoms includedleg pain, stomach pain and jawpain. I would visit the doctormany times a month, but itnever seemed to help. By thetime I was six I couldn't domuch without getting an infec-tion or illness of some kind.This was also straining the fam-ily of money and I guess every-thing…

By the time I was 8 mysymptoms were still botheringme, but doctors couldn't findany good answers. This wasjust the beginning of the pain.

I was blacking out andfainting. I was also losingweight rapidly from starving. Icould not eat for my stomachpains were too bad. I went in toan ENT where they found atumor in my head which waspushing on my right eye andthey found a cyst in my sinuscavity. They removed both.

A few months later Icouldn't handle the pain any-more, so my mom and I startedsearching harder for answers.Doctors said it was all in myhead and that I wanted atten-tion… and I believed them. Nodoctor believed me. No teacherbelieved me. I had no hope, soI didn't believe myself either.Every day I would go to thebathroom and faint all bymyself. When I got back toclass I would be punished forbeing late. I couldn't lie downor ride in a car because of headpain. My whole head felt like

it was blowing up and it waslike waves of water hitting myhead over and over.

My stomach was gettingworse. I couldn't eat anythingwithout my stomach blowingup like a balloon. It was horri-ble. I now had over 70 symp-toms and slept 99% of the time.I was pail and anemic. Peoplethought I was dying. I finallywent to a family doctor and

told her my symptoms after Ihad seen all the specialists. Sheknew the answer. She had toldme she knew a girl with someof my symptoms and that shewould test me. Two weeksafter being tested I got theresults back and they were pos-itive for Lyme! Now I had tofind the right doctor. I startedgoing to a specialist in Duluthfor 6 months, but I didn't feelany better so they gave up onme.

Then I ended up think-ing I was crazy again, but myfamily doctor said it wasn'ttrue. After talking to my friendswith Lyme disease, they toldme about a great doctor inWisconsin. His name is Dr.Hoffmann.

I asked my family doc-tor about it and I started goingto Dr. Hoffmann. While thiswas going on I had another cyst

removed and started focusingon my stomach pains. Theywere unbearable. I was in theER almost every day and theysaid I was too young for gall-bladder problems so my momand I decided to let mescream… and stop going to theER because they didn't do any-thing anyways.

Finally, after a year,they found out my gallbladderwas so bad it was about toburst. It was the worst they had

ever seen and the only explana-tion for it was Lyme disease.About 6 months later I had hipsurgery and another cystremoved, and then another…and the only explanation wasLyme disease.

Dr. Hoffmann is savingmy life! I hadn't been able towatch T.V., listen to my radio,go under water, or even ride ina car because my ears were sosensitive, and I couldn't walkup my stairs from my bedroom.I would faint every time. Iwould call crying to my momto help me up the stairs and shewould help. I also had a wheelchair. I stopped walking almostcompletely. My mom or sisterhad to help me wash myselfbecause I would faint if I gottoo fatigued. I always saw spotsand I was used to it. I stoppedeating and I wanted to die.

Now with DoctorHoffmann's help and treatmentI can ride my bike. I'm back atschool. I can walk up the stairsand even around the block!!! Idon't faint anymore and I'm offheart meds.

I love hanging out withmy friends and my family now.I feel like I might have achance to live. But if DoctorHoffmann loses his practice,then I will give up… and Iwon't go back to what I was!HELP ME AND HELP OTHERLYME SUFFURERS! Don't letus die!

Well I've said a lot. I'mtired… so if I wrote real badlyyou know why. I'm still gettingtreated and my doctor is surethat I will be better the longerI'm on the treatment for Lyme.I have improved a lot since westarted the treatments and mydoctor (Dr. Hoffmann) is all Ihave. He was the only one whostuck by me.

Whitney Busby15 years oldLindstrom, MN

Whitney Busby, 15, credits Dr. Hoffmann with saving her life

ISSUESChronic IllnessNutritionDepressionPeer PressureDrug AbuseDate Rape

Loss & GriefEating DisordersCuttingSelf InjurySuicideLearning disabilities

Heath & FitnessExerciseDietFaith FactorOvercoming adversityBi-polar disorders

Sports injuriesPregnancyTeen ParentingAdoptionWhen parents are illDiabetes

Submit your story or idea to [email protected]

The PHA is Recruiting Teen Age Writers



L.E.A.P. Arizona Lights Torch at the CDC in Atlantato Ask Recognition of ILADS Guidelines

by Tina J. Garcia, PresidentL.E.A.P. Arizona

It was a spur of themoment decision to drive toAtlanta, Georgia. My husband,Jose, asked me if I could makeup my mind in 30 minutes!Whoa! Some friends weremoving to Atlanta and neededus to carry their musical instru-ments for them in our van; theirmoving truck was packed full.

The thought of packing,wrapping up details at homeand in the office, and then driv-ing for 30 hours across thecountry was a dreadful thoughtfor me at the time. My hus-band really wanted to go,though, and because our friendsoffered to pay for the gas andopen their home to us northeastof Atlanta, I mustered all thestrength and courage within meand agreed to go. Jose wasreally glad that I was willing togo with him, and it made mehappy for him to feel that way.This made it much easier forme to live with my impulsivedecision.

I frantically finishedmany last-minute details for thenon-profit I founded, L.E.A.P.Arizona, Lyme EducationAwareness Program. It wasApril 28th and May was LymeDisease Awareness Month inArizona. I had newsletters toprepare for mailing, files andinformation to gather to takewith me to work on while inGeorgia and instructions for thevolunteer who would take careof the day-to-day responsibili-

ties while I was away. I gotaround to packing my suitcaseand was ready to go by oneo'clock a.m. I collapsed ontomy bed, closed my weary eyesand drifted off into very deep,perpetual thought. Sleep nevercame for me.Instead, I hadan idea flashinto my mindthat struck melike a bolt oflightning!

I wasgoing toAtlanta!Home of theCDC, Centersfor DiseaseControl andPrevention! Ihave beenwriting tothem for twoyears demand-ing that theILADS(InternationalLyme andAssociatedDiseasesSociety)TreatmentGuidelines forLyme disease be posted on theirwebsite for physicians andpatients! I could make this tripworthwhile for patients! Icould light a torch in honor ofLyme patients and Drs. Jonesand Jemsek, who are beingprosecuted by their state med-ical boards! I could light it infront of the CDC! I could callthe return trip to Arizona the

2007 Lyme DiseasePatient/Physician Benefit RoadTrip! I could ask every Lymepatient to contribute a smallamount to help fellow patientsand these two doctors who needour support! If the patients

couldn't afford to donate, theycould find someone else whowould be able to afford it! Icould fulfill L.E.A.P.'s Missionof providing financial assis-tance to patients! What betterway to celebrate our MayProclamation?

I jumped out of bed andturned on the computer again. Icreated a new webpage for

L.E.A.P's website thatexplained the purpose of theroad trip and provided a wayfor EVERYONE to donate!Believe me, I was really excit-ed! We left the next morning,Sunday, and by golly we made

it all theway toAtlanta byTuesdayafternoon.It was areallyrough tripfor us--thevan waspackedfull, thedog sat inmy lapthe entiretrip andwe hadless than10 hoursof sleepby thetime wearrived!Not agood startfor aLymepatient, so

I spent the next two days recu-perating from the ordeal.

Our visit with ourfriends was really great, and wewere able to visit with a fewother Lyme advocates who livein neighboring states. This wasso awesome for me to meet thepeople that I communicate withonline and over the phone.These are really dedicated

advocates who give so much ofthemselves to further our cause.It was an honor to meet them,and I will always cherish thattime spent with them!

I ordered the Lymetorch to be delivered to ourfriend's home and had the pressrelease prepared for distribu-tion. My Lyme infection hassettled in my spine, and I havehad muscle spasms for a coupleof months. It was Saturday,May 12th, and I felt the spasmcoming on while I went shop-ping for food for Jose's birthdayparty that night. The party wasgreat fun until I turned aroundand felt my nerve tweak like aplucked guitar string. The nextmorning I could barely standfrom the severe sciatica that ranthrough my buttock and downmy leg. The pain was sointense that I had to breathe asthough I was in labor! BySunday night, everyone wasurging me to go to the emer-gency room. I couldn't stay upall night, though, because I hadmade the commitment to be atthe CDC to light the torch forLyme patients and Drs. Jonesand Jemsek the next morning.So, I decided not to visit thehospital.

Although it was diffi-cult, we left in the morning,Monday May 14th, and droveto the CDC in Atlanta. TheCDC is a fortress, so we parkedacross the street from the gatedentrance and got our signsready to hold up for thepassersby. I could barely stand

“Road Trip:...cont’d pg 18

Analysis: US May be Funding Germ Warfare Research

by Sherwood Ross

MIAMI, FL -- Some113 universities, governmenthospitals, and corporate labora-tories that often engage inresearch having the potential tobe used for germ warfare, haverefused to publicly disclosetheir operations as required byUS Federal law, a nonprofitwatchdog agency has charged.

Instead of shuttingdown their operations, theBethesda, MD-based NationalInstitute of Health (NIH), thegovernment agency tasked withoverseeing these laboratories,allows them to continue tooperate, a peculiar stance for anentity describing itself as "thesteward of medical and behav-ioral research for the[American] nation."

From California to NewJersey and from Boston to SanAntonio, often in the heart ofinhabited areas, biological war-fare labs, lavishly financedsince 2001 by the Bush admin-istration with their share ofabout $20 billion, are literallycrawling with deadly germs,including diseases such asSpanish flu, Bubonic plague,Anthrax, Tularemia, and RiftValley Fever. Reportedly, secu-rity is lax in some of the labo-ratories and safety proceduresinadequate to protect the publicfrom exposure to deadlypathogens.

Under US law, recipi-ents of Federal funds forbiotech research must complywith NIH-issued guidelines.These include making availableto the public the minutes of thelabs' Institutional Bio-safetyCommittees (IBC) meetings,describing their operations andplans. In a number of instances,these IBCs have never botheredto hold a meeting. In othercases, the minutes they havereleased are devoid of any sub-stance.

In other words, theoperations of such laboratoriesare in many cases being keptsecret, reports Austin, TX,watchdog, Sunshine Project(Sunshine), a nonprofit bodythat attempts to protect the pub-lic from the risks of biotechnol-ogy experiments. The 1972Biological WeaponsConvention (BWC), to whichthe US is a signatory, prohibitsresearch on offensive biologicalweapons. While lab researchcontinues to be performed insecret, however, weaponsdesigned for offensive usecould ostensibly be concealed.An example of such a coverupmay be seen in the 1930s whenthe Japanese military maskedits secret germ warfare schemeas a water purification project.

As the US government-funded labs engage in "dual-useresearch," (pathogen studieshaving both offensive and

defensive applications),Sunshine's Edward Hammondreports he has "encounteredgrave problems with the sys-tem." Such troubling issuesinclude "risky experimentsapproved with dubious safetyprecautions ... inadequate IBCreview, dysfunctional and oth-erwise noncompliant commit-tees, and other types of bio-safety problems."

Francis Boyle, an inter-national legal expert at theUniversity of Illinois,Champaign, puts it more blunt-ly. He called the in-house uni-versity committees "a joke anda fraud" that provide "no pro-tection to anyone." Boyle, whodrafted the Biological WeaponsAnti-Terrorism Act of 1989enacted by Congress, states thePentagon "is now gearing up tofight and 'win' biological war-fare" pursuant to two nationalstrategy directives pushedthrough by George W. Bushand adopted "without publicknowledge and review" in2002.

Hammond lodged acomplaint two months ago withDr. Amy Patterson, director ofthe NIH Office ofBiotechnology Activities,accusing 113 institutions of"non-compliance with the NIHguidelines," and more specifi-cally, of refusing to honorrequests for IBC meeting min-utes.

"Honoring theserequests is not only mandatoryunder the NIH guidelines thatyou are charged with enforcing[but] transparency is also amoral duty of institutions thatconduct research ... and select[biological] agent work thatcould endanger the public,"wrote Hammond to Patterson.He also pointed out to the NIHBiotechnology Activities direc-tor that: "Failing prompt com-pliance by these institutions wenote that your office must do itsduty under NIH Guidelines andterminate funding."

In the meantime,Patterson apparently had trou-bles of her own obtaining infor-mation from labs on the Federalpayroll. She issued a"reminder" December 6, 2004,to universities engaged inresearch stating: "compliancewith the NIH guidelines is criti-cal to the safe conduct ofresearch and to the fulfillmentof an institutional commitmentto the protection of staff, theenvironment, and publichealth."

It bears rememberingthat since 9/11, biotech houses,military laboratories, and Stateand private universities acrossAmerica, as well as others situ-ated in Canada, Australia, andSouth Africa, have collectivelylapped up record sums inFederal research and develop-ment dollars.

Just how broad is thisinternational biotech researchenterprise? Sunshine reportsthat at the San Antonio, TX,Southwest Foundation forBiomedical Research (SFBR)alone, there are 6,000 cagedchimpanzees, baboons, andother primates, whose mereupkeep costs US taxpayers $6million annually. Authoritiesalso state that SFBR geneticallyengineers monkeys and harborssome of the world's most dan-gerous viruses such as thosecausing Ebola and Lassa fevers.

According to TheWashington Post December 25,2006, another institution bene-fiting from the US biotechresearch drive is the BattelleNational BiodefenseInstitute(BNBI) of Columbus,OH, which has just received afive-year $250 million awardfrom the Department ofHomeland Security (DHS) torun the new bio-defense analy-sis center under construction atFort Detrick, MD. Earlier in theyear, July 30, The Post hadreported that much of whattranspires at BNBI may neverbe publicly disclosed as theBush administration "intends tooperate the facility largely insecret." Battelle also does notmaintain an effective IBC,Sunshine charges.

"Some of the researchfalls within what many arms-

“Germ Warfare” cont’d pg 17


MEDICAL PERSPECTIVES

by Laura Zeller

In Part 1 of "DeepDiving for a Cure" I discussedthe basics of the use ofHyperbaric Oxygen therapy(HBOT) for Lyme disease treat-ment. To summarize, the basicprinciple is that by exposing theentire body to 100% pure oxy-gen, under pressure, the Lymedisease bacteria (borreliaburgdorferi) will be destroyed.HBOT offers a strong alterna-tive to traditional antibiotictherapy, as well as a powerfuladjunctive therapy. HBOT hasshown promise as a powerfultreatment option for thoseafflicted with Lyme disease,especially when combined withantibiotics. In my experience,monoplace (single person)chambers gave me the bestresults during my Lyme treat-ment.

I recently had theopportunity to discuss the useof hyperbaric oxygen treatmentin Lyme disease with JuliaSudylo, R.N. Julia is a CertifiedHyperbaric Technician (CHT),who owns, and operates aHBOT clinic in Basking Ridge,New Jersey. The following is aquestion and answer with Juliawhich will describe the basicsof monoplace HBOT.

How can hyperbaric oxygenhelp Lyme disease patients?

Hyperbaric oxygenincreases circulation to thebody and that includes thebrain. Oxygen crosses the bloodbrain barrier. This is whysimultaneous use of antibioticswith HBOT is highly recom-mended. The increases of pres-sure and oxygen allow theantibiotics to penetrate deepinto the body tissues wherespirochetes like to hide. The100% pure oxygen, adminis-tered at 2.4 ATA has beenshown in studies (see refer-ences below) to directly killborrelia burgdorferi.

How does HBO kill the Lymebacteria?

Borrelia burgdorferi(Bb) is a bacterium that does

not survive under increasedoxygen. Just as a fish would notsurvive out of water, these bac-teria cannot survive in anincreased oxygen environment.Lyme bacteria aremicroaerophilic, which meansthat they are debilitated in highoxygen environments.Thespirochete that causes Lymeprefers an environment withdecreased circulation becauseof the lack of tissue oxygena-tion in those areas of the body.According to a study by Dr.Charles Pavia, spirochetes wereshown to die in the presence ofhyperbaric oxygen both in vitroand in vivo. As the oxygen pen-etrates deep into the blood plas-ma and tissues, it stimulates theformation of new blood vessels,increases circulation to existingblood vessels, and helps thosewith decreased circulation heal.Most importantly for Lyme dis-ease treatment is the potentialfor HBO to increase the effec-tiveness of antibiotics. As docu-mented by Dr. Glen Burklandin a "Retrospective Review ofLyme Patients who receivedHyperbaric Oxygen," Borreliaburgdorferi cannot survive inan oxygen-rich environment,because it is a facultative anaer-obe. HBOT increases theamount of oxygen in the body,which in turn causes spiro-

chetes to die. When combinedwith HBOT, the effectivenessof antibiotics to kill the Lymeorganism is increased as themedication is pushed deep intothe body, attacking the spiro-chetes.

What is a typical treatmentprotocol?

Treatment protocolsvary depending on the condi-tion of the patient. They rangefrom 1.5 ATA for brain injuryto 2.4 ATA for Lyme disease.This does not account forDecompression Sickness (DCS)where you would require arepetitive dive sequence.Therapeutic sessions are typi-cally 40 sessions long.However, in theLombard/Burkland study, it wasobserved that more permanentresults where achieved with upto 60 to 80 sessions. Individualresults vary. Typically, Lymepatients begin a protocol of 30-60 initial treatments, followedby 10 treatments every 4-6weeks for as long as it takes forsymptoms to abate. Eachpatient's LLMD will prescribean individual protocol specify-ing the length of treatment.Each patient responds different-ly. Some patients dive oncedaily, while others prefer the

more aggressive approach of 2dives per day. You must have adoctors prescription for HBOT.William Fife, Ph. D., aHyperbaric Medicine specialistat Texas A&M University,helped establish the Lyme dis-ease protocols for HBO.

Is HBOT covered by insur-ance?

Currently, the insuranceindustry has only been friendlyto a limited amount of indica-tions. Reimbursement is limitedto the 13 approved conditionsby the Undersea HyperbaricMedical Society (UHMS).Lyme is not one of the diseasesthat is approved, and althoughit has shown to be a significantbenefit to Lyme patients, it isstill labeled as investigational.

What are some preparationsfor HBO therapy?

A completed physical isindicated, including a chest x-ray. Before any session, it isadvisable to consume a healthymeal, free of any carbonateddrinks. For those with a historyof upper respiratory infections,it is advisable to take a decon-gestant the evening before

“Diving Deep”...cont’d pg 14

Diving Deep for a Cure: Part II

by Sue Vogan

Is the new Lyme & DiseasesResearch Center at ColumbiaUniversity for research onlyor will victims of Lyme dis-ease be able to receive treat-ment there?

It's only going to be forresearch. In the context of treat-ment, we will be doing treat-ment-trials, so patients will beinvolved.

Ft. Detrick and Plum Islandare/were doing tick-borne dis-ease research. How will thenew center be different?

I can't speak to as whatother places are doing, but I cansay that the facility at Columbiahas brought together a numberof outstanding scientists - someof whom are among the best inthe world in their area ofexpertise. For example, just tolook at tick co-infections wehave brought in Dr. Ian Lipkin,one of the world experts on theidentification of foreignpathogens. Using this biotech-nology that he's developed forrapid assessment of unknownpathogens, (by) applying thattechnology and his scientificbrilliance to study what elsemight be inside ticks, we mightbe able to find what else maybe inside spinal fluid in someof our patients.

How will the new center befunded?

It's partly funded byColumbia, partly by the donors,partly by New York State. Theongoing research that we do isgoing to be funded in an ingo-ing way by the donors for pilotstudies and by Federal grants

we are awarded from promisingresults from pilot studies.

How many people/researcherswill be employed at the newcenter and how were theyselected?

Hiring someone full-time takes an enormous amountof money, as you can imagine.Bringing in an outside scientist,to recruit someone to the uni-versity, takes approximately $6million alone. Rather than usethe $3 million that we have forthat purpose, we decided tomake access of the physicianswho are already employed here(Columbia University). Wewon't be paying the salaries ofthe senior researchers, butrather paying the salaries ofmore junior researchers.

You'll be at a Lyme diseasesymposium in West Haven,Connecticut on May 19, 2007.What can we expect to hearfrom you?

I am interested in sum-marizing what's been learnedby the studies of chronic Lymedisease to this point, including

my own studies, indicatingwhere we should go in thefuture. What are the promisingleads that came from thisresearch, what questionsremain, what problemsemerged, how studies should bedesigned in a better way so asto elicit the true test of hypoth-esis that you want to test.

The Lyme disease communityis anxiously awaiting theresults from your lastresearch project - when willthe results be published?

I hope very soon. I can'tgive you a date, but I think weare getting closer to that point.

Is there anything in particu-lar holding the publicationup?

Whenever you're theCM of a paper that has findingsthat are somewhat differentfrom the rest of the medical lit-erature, the reviewers justifi-ably want to be cautious andcareful about exactly what wasdone in the study, so they asklots of questions. It's not unusu-

al when you have a study thatis complex and has resultssomewhat different from themainstream.

You have a research projectthat you're currently workingon - "hypochondria." (Dr. Fallon chuckles ever soslightly - perhaps because I didmy homework before the inter-view)

Yes, that's right.

Do you see many hypochon-driacs or is it prevalent withchronic disease?

I don't see a lot ofhypochondria within the Lymepatients. My interest inhypochondria stems from anearlier portion of my life whenI was studying obsessive-com-pulsive disorders. Wheneveryou're doing research, you haveto keep the grants coming fromwherever you can get them, sobecause I also have a majorexpertise in hypochondriasis,this study was a logical one todo on the treatment ofhypochondria. One of theadvantages of a Lyme center is

that once the endowment or thefunding gets big enough or weget more grants in, we canfocus more on Lyme diseasethan other things that you needto be focusing on in order tokeep the salary of the employ-ees and other things you havegoing.

In your opinion, is long-termantibiotic treatment effectivefor Lyme disease patients?

In my opinion, long-terntreatment can be helpful."Effective" is a complicatedword because it implies a num-ber of things. It can be helpfulto improve symptoms.Unfortunately for a number ofpatients, that improvement maynot be sustained. So, eventhough they're helpful, they'renot necessarily always a cura-tive.

How did you first becomeinterested in Lyme disease?

I live in Connecticutand a lot of people around hereget Lyme disease. Polly

“Research”...con’t pg 16

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The Hidden Epidemic

What’s New In Research?An interview with Dr. Brian Fallon, Columbia University



Why Doesn’t My Doctor Know This?

by Kent Holtorf, MD

A question that is oftenraised by patients is "Whydoesn't my doctor know all ofthis?" The reason is that theoverwhelming majority (all buta few percent) of physicians(endocrinologists, internists,family practitioners, rheumatol-ogists, etc.) do not read medicaljournals. When asked, mostdoctors will claim that theyroutinely read medical journals,but this has been shown not tobe the case.

The reason is multi-fac-torial, but it comes down to thefact that the doctors do nothave the time. They are toobusy running their practices.The overwhelming majority ofphysicians rely on what theylearned in medical school andon pharmaceutical sales repre-sentatives to keep them "up-to-date" on new drug information.Obviously, the studies broughtto physicians for "educationalpurposes" are highly filtered tosupport their product.

There has been signifi-cant concern by health careorganizations and experts thatphysicians are failing to learnof new information presented inmedical journals and lack theability to translate that informa-tion into treatments for theirpatients. The concern is essen-tially that doctors erroneouslyrely on what they have previ-ously been taught and don'tchange treatment philosophiesas new informa-tion becomesavailable. This isespecially true forendocrinologicalconditions, wherephysicians arevery resistant tochanging old con-cepts of diagnosisand treatmentdespite over-whelming evi-dence to the con-trary, because it isnot what theywere taught inmedical schooland residency.

This concern is particu-larly clear in an article pub-lished in the New EnglandJournal of Medicine entitled"Clinical Research to ClinicalPractice - Lost in Translation."1The article was written byClaude Lenfant, MD, Directorof the National Heart, Lung andBlood Institute, and is well sup-ported. He states there is greatconcern that doctors continue torely on what they learned 20years before and are unin-formed about scientific find-ings. The article states thatmedical researchers, publicofficials, and political leadersare increasingly concernedabout physicians' inability totranslate research findings intheir medical practice to benefit

their patients, and states thatvery few physicians learn aboutnew discoveries [via] scientificconferences and medical jour-nals and translate this knowl-edge into enhanced treatmentsfor their patients.

He states that a reviewof past medical discoveriesreveals how excruciatinglyslow the medical establishmentis to adopt novel concepts.Even simple methods toimprove medicalquality are often metwith fierce resistance.The article states,"Given the ever-growing sophistica-tion of our scientificknowledge and theadditional new dis-coveries that are like-ly in the future, manyof us harbor anuneasy, but quite real-istic, suspicion thatthis gap between whatwe know about dis-eases and what we doto prevent and treatthem will becomeeven wider. And it isnot just recentresearch results that are notfinding their way into clinicalpractice; there is plenty of evi-dence that 'old' research out-comes have been lost in transla-tion as well."

Dr. Lenfant discussesthe fact that the proper practiceof medicine involves "the com-bination of medical knowledge,intuition and judgment" andthat physicians' knowledge islacking because they don't keepup with the medical literature.He states that there is often adifference of opinion amongphysicians and reviewing enti-ties, but that judgment andknowledge of the research per-taining to the patient's conditionis central to the responsiblepractice of medicine. He states,"Enormous amounts of new

knowledge arebarreling downthe informationhighway, but theyare not arriving atthe doorsteps ofour patients." These thoughts

are echoed byphysicians whohave researchedthis issue as well,such as WilliamShankle, MD,Professor,University ofCalifornia, Irvine.He states, "Mostdoctors are prac-

ticing 10 to 20 years behind theavailable medical literature andcontinue to practice what theylearned in medicalschool…There is a breakdownin the transfer of informationfrom the research to the over-whelming majority of practic-ing physicians. Doctors do notseek to implement new treat-ments that are supported in theliterature or change treatmentsthat are not."2

The Dean of StanfordUniversity School of Medicineunderstands that there is a prob-lem of doctors not seeking outand translating new informationto benefit their patients. Hestates that in the absence oftranslational medicine, "thedelivery of medical care would

remain stagnant and unin-formed by the tremendousprogress taking place in bio-medical science."3

This concern has alsoreceived significant publicity inthe mainstream media. In anarticle published in a 2003 WallStreet Journal article entitled"Too Many Patients NeverReap the Benefits of GreatResearch," Sidney Smith, MD,former President of the

American Heart Association, isvery critical of physicians fornot seeking out available infor-mation and applying that infor-mation to their patients. Hestates that doctors feel the bestmedicine is what they've beendoing and thinking for years -because that is what they'vebeen doing. They discount new

research because it is not whatthey have been taught or whatthey practice, and refuse toadmit that what they have beendoing or thinking for manyyears is not the best medicine.He writes, "A large part of theproblem is the real resistance ofphysicians…many of theseindependent-minded souls don'tlike being told that scienceknows best, and the waythey've always done things is

second-rate."4 The National

Center for PolicyAnalysis also reit-erates concern forthe lack of abilityof physicians totranslate medicaltherapies intopractice.5 A review pub-

lished in TheAnnals of InternalMedicine foundthat there is clear-ly a problem ofphysicians notseeking toadvance theirknowledge byreviewing the cur-

rent literature, believing propercare is what they learned inmedical school or residencyand not basing their treatmentson the most current research.They found the longer a physi-cian is in practice, the moreinappropriate and substandardthe care.6

A study published in the

Journal of the AmericanMedical InformaticsAssociation reviewed by TheNational Institute of Medicinereports that there is an unac-ceptable lag between the dis-covery of new treatment modal-ities and their acceptance intoroutine care. They state, "Thelag between the discovery ofmore effective forms of treat-ment and their incorporationinto routine patient care aver-ages 17 years."7,8

In response to this unac-ceptable lag, an amendment tothe Business and ProfessionsCode, relating to healing arts,was passed. This amendment,CA Assembly Bill 592; An actto amend Section 2234.1 of theBusiness and Professions Code,relating to healing arts, states,"Since the National Institute ofMedicine has reported that itcan take up to 17 years for anew best practice to reach theaverage physician and surgeon,it is prudent to give attention tonew developments not only ingeneral medical care but in theactual treatment of specific dis-eases, particularly those that arenot yet broadly recognized[such as the concept of tissuehypothyroidism, ChronicFatigue Syndrome, andFibromyalgia]..."9

The Principals ofMedical Ethics adopted by theAmerican Medical Associationin 1980 states, "A physicianshall continue to study, apply,

“Why”...cont’d on pg 13

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“The concern is essentially that doc-tors erroneously rely on what theyhave previously been taught and don'tchange treatment philosophies as newinformation becomes available. Thisis especially true for endocrinologicalconditions, where physicians are veryresistant to changing old concepts ofdiagnosis and treatment despite over-whelming evidence to the contrary,because it is not what they were taughtin medical school and residency.”

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Personality and Character Flaws Caused byInfections and Inflammation:

Lyme, Bartonella, Babesia, Biotoxins, Indoor Mold and Inflammation Routinely Alter Mood and Relationships

by Dr. James Schaller, MD

Do you see any of thesein yourself or others in yourlife?* Moody and irritable * Rigidity * Impulsivity * Poor insight * New distractibility * Trouble finishing a task * Acting unwisely with money,drinking, drugs, sex or speechcontent * Decreased speech speed andsmoothness * Decreased coordination * Stress with transitions orchange * Routine lateness * Empathic deficits * Social group-think percep-tion deficits *Poor boundary awareness

All of these behaviors,mood problems and cognitivetroubles listed above werefound in seven patients whoseblood imagery is below. Noneof the physicians who treatedthem diagnosed their Bartonellaand Babesia-perhaps becausethese are newly appreciatedemerging infections are bestvisualized with a new special-ized blood stain.

An infectious diseasephysician told me my patientshad too many positive resultsfor Lyme, while his laboratoryLyme Western Blot results arealmost always negative, includ-ing in patients with extensivetick bites and repeated bulls eyerashes. He is fully certain thathis lab is reliable. I would nottrust them to identify a stone.

They missed the infections inthe two images above and didnot report the Babesia orBartonella on a manual bloodsmear, and they also missedthese two infections and Lymein tests for antibodies againsteach of these infections.

As I reflected on thisphysician's extreme rigidity,unreasonableness and routinefalse negative results in patientswith obvious Lyme disease, Irealized something was cogni-tively wrong with him. Uponreflection, I realized when Italked with him for over thirtyminutes that I observed manypersonality, character and neu-rological flaws; then I realized Ihad many patients with similarflaws. Many of my patients hadvery subtle, pathological per-sonality signs, not merely obvi-ous bulls-eye rashes. So I begantesting for all major tick-borneinfections whenever I noticedany small personality abnor-malities, cognitive changes oremotional troubles-things com-monly missed by relatives,friends and physicians, andwhich were called "charactertroubles."

I believe the most com-mon symptoms of Bartonella,Babesia, Lyme, indoor mold

and biotoxins are small emo-tional and personality changes.If we look at the evolution ofLyme and Bartonella, we seethat the symptoms regarded ascentral, are not found in mostpatients. For example, Lymedisease was initially seen asalmost entirely a rheumatologyand joint disease. Yet today wenow know that a large percent-age of patients have no arthritis.

In contrast, I would pro-pose that 90% of Lyme patientswill at some time show psycho-logical, psychiatric or cognitiveneurological findings. I feel thatmy preliminary work on myBartonella textbook shows thatthis infection has a massivevariety of psychiatric and neu-rological signs and symptoms,and these are far in excess ofsimplistic views of Bartonellaas a short "cold" with transientenlarged lymph nodes which isfully gone in a few weeks.

I have found thatBartonella causes virtuallyevery psychiatric illness, per-sonality illness, and mood andcognitive disorder. The patientcases below are routinely foundwith "recovered" Bartonellaand Lyme patients.

Infectious disease physi-“Personality & Infection” pg 9

Extensive Babesia ParasitesInside Red Blood Cells-Ring

and Crescent Forms .(From S. Fry Laboratories)

Extensive Small BartonellaBacteria Attached to the

Outside of Red Blood Cells-Note box pointing to the

Bartonella.. (From S. Fry Laboratories)



cians have a very poor abilityto notice highly subtle psychi-atric and cognitive changes, andso do not notice residualinflammation brain pathology.Infectious disease physiciansand General Physicians are ableto diagnose enlarged lymphnodes and fevers, but areunable to notice subtle charac-ter, psychiatric and cognitivechanges. Many physicians areseeing emerging infections andemerging biotoxin issues, butthey are often so subtle thatthey are seen as being a part ofa person's character defects,and not medical or psychiatricin any way.

Psychiatric char-acter changes and small cogni-tive neurological illness ismuch more common in Lyme,Bartonella, Babesia or indoormold exposure-more than anyother sicknesses in the illnesseswe have mentioned above.

So, for example, if youfeel that arthritis or joint symp-toms are the most commonsymptoms of tick or flea infec-tions, I would suggest that youare wrong. Individuals withthese infections have findingsfar more common in the largeneuropsychiatric area as com-pared to the percentage havingjoint disease. And these peoplewith psychiatric and charactero-logical impairment are morelikely to be rejected by theirspouse, children, parents, sib-lings, friends and work associ-ates.

These neuropsychiatri-cally ill individuals are oftenrejected and alienated by lovedones because their brain illnessis incorrectly considered "char-acter impairment." The braininfection and brain-inflamed ill-ness is seen incorrectly as "whothey are." Sometimes patientsdo better with joint diseasebecause they are seen as a poor,suffering patient with arthritis.However, if the infections andbiotoxins cause significantbrain inflammation areas, thesepatients are seen not as havinga neurological or psychiatricdisease, but as being "bad."They are seen as nasty, selfish,self-centered, distant, restless,lazy, moody, rigid, impulsive,clueless, distractible, unhelpful,abusive, uncaring, pushy andimpulsive.

I believe millions ofpeople with "personality andemotional problems " are actu-ally clear victims of newlyemerging infections caused bycommon ticks, fleas, contactwith flea feces and dust mites.Character disordered people orindividuals with eccentricaggression can have these prob-lems, caused by Lyme disease,nine human Bartonella species,thirteen human Babesia species,and flea and dust mite fecescontact. Some are also charac-ter disordered by the biotoxinsfrom indoor mold, Lyme dis-ease or Bartonella-not the bac-teria or spore, but the outer sur-face toxin.

Below are samples ofthe causes of brain inflamma-tion or brain infection whichclearly alter a person's person-ality. When the brain isinflamed or infected, a person'sbehavior is seriously changedin very specific ways-fromstarting fist fights to mild rest-lessness. Since I see this every

day, I believe it is critical westop calling the medical illness-es, which alter brain function invery stealthy ways, as "flaws incharacter", or as "immorality."

Many infections andmany types of inflammationalter behavior. In patients withBartonella, Babesia, Biotoxins,Lyme, indoor mold exposure,or inflammation, approximately97% have clear personalityproblems that are consideredcharacter and personality flawsby their friends, relatives andco-workers. This often leads toabuse of the patient, and rejec-tion and isolation of these neu-rological and psychiatricallyimpaired individuals. Theseinfectious, biotoxin and inflam-mation diseases are so severethat at least 20% require schiz-ophrenic and antidepressantmedications at profoundlyextreme treatment levels.Another 40% are quickly bio-chemically overwhelmed byextremely lowslivers of thesmallest doses,because theirbrain is so sensi-tive andinflamed. Theyhave a brain onfire, which isseverelyinflamed-whichhas nothing to dowith character,morality or theirtrue personality.

It is criti-cal we stop calling these med-ical illnesses "flaws in charac-ter." They are clearly due toaltered brain function by verystealthy infections and pro-found inflammation.

Tick and flea infectionsand indoor mold all affect thefront part of the brain. We callthis the "frontal lobe." Think ofit as the top of a pyramid. If a"brick" is out of place belowthe top of the structure, the topof the pyramid will be "off."Similarly, if brain tissue is irri-tated, inflamed or infectedbelow the frontal lobe, it willalter a person's personality.

So why should youcare? Again, the brain is proba-bly the most sensitive organ interms of irregularities. If youdeprive it of glucose or oxygenfor minutes you are dead, butmany muscles can last hours.Therefore, I believe the brain isthe most sensitive organ toLyme, Babesia, Bartonella andmold biotoxins.

Common Frontal Brain Signs

"Flaky" & "Spacey"Kim is called "flaky"

because she is regularly dis-tracted. She was not that wayuntil she moved to Long Islandat the age of twenty-four. Shehas two kids who are now inschool, and while she is busy,even when on a vacation for theweekend with girlfriends, she isdistracted. Her basement wasfound to have three species oftoxic mold.

"Clueless" About Self Health

Ed is a respected engi-neer with a home near deerwalkways and occasionallymice. The neighbor's horse getstwo shots a year for "Lyme." A

man a few blocks away died ofan aneurysm two years ago.Ed's daughter has an unusualarm tingling problem. When Imentioned he might considerbeing tested by a progressivelab like IGeneX for Lyme, hesaw no need. He gets "regularyearly exams and lab work,takes nutrients, and exercises."

A year later a childdown the street had a seizureand was diagnosed with Lyme.Ed's dog was also diagnosedwith Lyme in a routine screen-ing test. He still sees no needfor his own testing. He feels"fine." Why would a very smartman, who prepares for every-thing in his business, be unableto connect his many risks ofLyme disease and get a $190test? He has insight impair-ment.

Mark is a physician whohas read hundreds of pages onchronic untreated Lyme and thebiotoxins Lyme leaves after it is

dead. He knowshe has had theillness at leasttwenty years. Hedoes a couplemonths ofantibiotics andthen stops talk-ing to his physi-cian. He alsostops takingcholestyramineto bind up hisLyme toxins.Without think-ing, he drifts

into a state of non-reflectionand non-treatment. Why? Hisability to evaluate himself, orlook at himself, is impaired.Mark also is positive forBartonella based on a patent-pending blood smear showingBartonella attached to the out-side of his red blood cells.

He would only do thistest after I agreed to pay for hislab. His blood looks similar tothis sample below.

Decreased Productivity

Linda has been runningher household and a part-timejob for five years. In the lasttwo years, very slowly, she hasbeen finding her "to do" listharder. She has new troublecompleting a complex task, i.e.,carrying it from "a" to "z." Shehas Babesia and Lyme. TheBabesia testing took a longtime to have done because itwas low on her "to-do" list. Herblood looks approximately likethis sample. Obviously she hasdecreased productivity which isoutside her awareness due to

Babesia. All the cells that

appear to have a nucleus areactually showing parasiticBabesia inside the cells.(Babesia Slide compliments ofDr. S. Fry)

ImpulsivityMichelle has been argu-

ing with her husband a lot thisyear. She spends so muchmoney on clothes, crafts, furni-ture, and antiques that he says itseems she wants him to work todeath. She feels guilty at times,and does not know why shespends as she does.

Her brother "acts out"with drinking and marijuana.He has wanted to cut back onboth, but finds it very challeng-ing. He has tried NA and AA,but finds it hard to attend in a

sustained manner.Tom struggles with

anger and since his visit to hisfriend's home in Harrisburg, PAon a hunting trip in the sur-rounding counties; he finds he"goes off" on his wife in a waythat scares her. She is fairlystunned that his drive hasturned into greater work inten-sity and hostility at modestfrustrations. He curses, yellsand throws things. "He neverdid this before," she reports.His tests came back positive forLyme and Bartonella.

Lynn loves her husband.He works hard, and she knowshe is trying to find them a bet-ter life. She is frustrated withher life and yet is unable toexplain why. She has traditionalmorals, but ends up sleepingwith the local pharmacist. Sheasks, "What was I thinking?"She reported having a bulls-eyerash when she was nineteen,and being treated only twoweeks with a low dose antibiot-ic.

Rigidity to New Ideas,Changes, Demands on Time

Anthony is a brightman, and he has "always beenopen to new ideas." Recently,he has had worsening pain inhis knees and shoulder. He usedto play different sports, whichcaused some injury to thesejoints. When he mentioned thatthey were originally from NewJersey, I mentioned Lyme,which has enzymes to dissolvecartilage and can affect bones.He rolled his eyes when I men-tioned this, and yet tried to notlet me see. I mentioned to himthat Lyme could make any areaof body weakness worse. (Hekept forgetting this point in ourconversations. I guess his jointsare somehow affecting hismemory?) He mentioned hehad been to see Dr. Robins andthe prestigious Dr. Smith, and if"I had Lyme I am sure theywould have checked for it."

I asked him since whenwere surgeons, who are routine-ly sued and fighting to make a

profit, able to find the "freetime" to read about cutting-edge tick illness disease materi-al? The unwillingness to evenconsider my comments a possi-bility shows frontal rigidity. Herefused testing.

Mark has been havingsome chest tightness anddepression for many years. Hewas hospitalized twenty-threeyears ago for a very high fever.He was given antibiotics for an"unidentified infection" andafter twelve days was released.Yet he had residual fatigue,depression and anxiety. He hasseen over thirty different physi-cians in six states, trying to finda cause for his emotional trou-ble. When his labs came backhe was positive for Lyme,Erhlichia and Bartonella.

Ticks, especially poppy-seed sized ticks, carry thesethree common infections. Healso showed high body inflam-mation (a high MMP-9 and alow VIP), and HLA genes thatshowed he was very mold sus-ceptible to mold biotoxins. Hesaid over ten times, over andover again in the months thatfollowed, "I just cannot believemy respected doctors all missedthis diagnosis." He was treatedwith four different antibiotics;then Actos to cool down hisinflammation genes, andcholestyramine to remove theLyme and indoor mold biotox-ins. He is better every fewweeks and is improved 80%.He is off three of his psychi-atric medications and the othertwo are markedly more effec-tive. He was agitated and suici-dal when I first met him, nowhe is only merely occasionallybored. He finally understandshe was ill and it was impactinghis brain.

Narcissism/Profound Self-Centered Thinking

Alice complains rou-tinely. She hijacks conversa-tions to talk about herself.When you talk with her yousense she is not connecting-you could just as easily be achair. She was diagnosed withLyme by IGeneX, had a num-ber of signs and symptoms ofLyme, and had a SPECT scanconsistent with Lyme. On aheavy metal challenge sheshowed elevated arsenic andlead. A home water test byDoctor's Data found both met-als elevated in the well water.After treatment, she slowly hada personality shift. Her abilityto care and connect is clearlyimproved. She believes both theinfections and metals under-mined her brain function andaltered her personality.

Processing Trauma

Pam's husband cheatedon her during their early yearsof marriage. She is marriedover 30 years and talks about itlike it was yesterday. I have noevidence that he has violatedhis vows since those early yearswhen he was an alcoholic. Theyhave had eight years of therapy,but the pain of the betrayal hasnot been "metabolized." Bothare IGeneX positive for Lymeand she is also positive forBartonella. She had a bulls-eyeLyme rash in the 80's and two

“Personality”...cont’d pg 15

“It is critical westop calling these medical illnesses

"flaw in character."They are clearly

due to altered brain function by very

stealthy infections and profound

inflammation.”

Number 1 and 2 are Pointing toSamples of Bartonella Attached to theOuter Surface of Red Blood Cells.(Bartonella Slide courtesy of FryClinical Laboratory)

“Personality & Infection”...cont’d from pg 8

Babesia inside red blood cells


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Ticktoons

by Terri Reiser

National MultipleSclerosis

Association:www.nmss.org

Alabama3840 Ridgeway Drive

Birmingham, AL 35209Phone: (205) 879-8881

Phone: 1-800-FIGHT-MSEmail: [email protected]

www.nationalmssociety.org/alc

Northern California150 Grand, Oakland, CA

94612Phone: 510-268-0572

toll-free: 1-800-FIGHT MSEmail:

[email protected]://www.msconnection.org

Colorado700 Broadway, Suite 808Denver, CO 80203-3442

Phone: 303.831.07001.800.FIGHT.MS

Georgia455 Abernathy Rd. NE,

Suite 210Atlanta , GA 30328

Phone: 404-256-9700Phone: 1-800-FIGHT-MS

[email protected]

Florida2701 Maitland Center Pkwy,

Suite100Maitland, FL 32751

Phone: (407) 478-8880Email: [email protected]

www.nationalmssociety.org/flcTexas

8111 N. Stadium Drive, Suite 100

Houston , TX 77054Phone: 713-526-8967

ALS AssociationDC / MD / VAhttp://www.alsinfo.org/

7507 Standish PlaceRockville, MD 20855

(301) 978-9855toll free: (866) 348-3257

fax: (301) 978-9854

Great Philadelphia ALS Chapter

321 Norristown Road, Suite 260

Ambler, PA 19002Phone: 215-643-5434

Toll Free: 1-877-GEHRIG-1 (1-877-434-7441)

Fax: 215-643-9307 [email protected]

South Texas Chapterhttp://www.alsa-south-tx.org/

(210) 733-5204 toll free at (877) 257-4673

North Texashttp://walk.alsanorthtexas.org/

site/PageServer1231 Greenway Dr.,

Ste.385Irving, TX 75038

[email protected] 877-714-0088

The ALS AssociationUpstate New York

Chapter323 Route 5 West

P.O. Box 127Elbridge, NY 13060

315-689-3380Toll Free for PALS:

1-866-499-PALS

[email protected]

Lyme DiseaseAssociation

lymediseaseassociation.org/Pat Smith 888.366.6611

ArizonaScottsdale, AZ 85259

Group facilitators :Karen Genest 480-632-6444

Larry Levy [email protected]

Northern Arizona Tina Caskey:

[email protected] 928-779-2759

Southern Arizona - DonnaHoch: [email protected]

520-393-1452L.E.A.P. Arizona

Tina J. GarciaLyme Education Awareness http://www.leaparizona.com

480-219-6869 PhoneArkansas

Mary Alice Beer (501) 884-3502

[email protected]

ROBIN SCHUMACHER 1057 R St.

Fresno, CA 93721Phone: (559) 485-5445

[email protected] Parker

303-447-1602 [email protected]

AlabamaJim Schmidt (334) 358-3206

[email protected] Arkansas

Mary Alice Beer (501) 884-3502

[email protected] Support:

truthaboutlymedisease.com/forum

Dana Floyd, director

Lyme Disease SupportGroups cont’d

Kansas913-438-LYME

[email protected] Montana

[email protected] CarolinaStephanie Tyndall

[email protected] Lenoir County Hospital,

Kinston, NCNew Mexico

Veronica Medina (505)459-9858

[email protected] Oklahoma

Janet Segraves 405-359-9401 [email protected]

Portland, Oregon Meets 2nd Sunday of each

month 2010 NW 22nd StreetSecond Floor from 1-3 PM.

503-590-2528 TEXAS: Dallas/Ft Worth

[email protected]

817-455-8520Greater Austin Area Lyme

Council. Teresa Jones [email protected]

HoustonContact: Teresa [email protected] State

Alexis Benkowski [email protected]

WI / IL / MN Regional areasContact PJ Langhoff

(920) 349-3855www.Sewill.org

www.LymeLeague.com (Intl)Lyme Coalition of N.

WisconsinPat Jackson (715) 356-3364

[email protected]

WildCondor’sWorld

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Texas LymeDisease

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All donations are tax exempt.

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CALLING ALLTEXAS LYME

PATIENTSAND CAREGIVERS!STAND UP FOR LYME (SUFL) invites you tojoin our email list to receive news of advocacy

activities and events promoting awareness of andsolutions to issues faced by Texas patients.

To join the list, go to www.standupforlyme.org andclick the "Contact Us" link in the left hand sidemenu bar. Then have a look around the site tolearn more about Lyme in Texas and the nation.

SUFL has been busy cultivating important statelegislative supporters to develop a strategy which

will lead to protection of our Lyme Specialists, andour work continues.

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the whole human race. Theinformation it contains is keyto the survival of our species.

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Support your localfarmers and encourage them toproduce their food in the mostnatural way possible. This willbe a major step in taking backthe control and safety of ourfood supply.

We must begin now toavoid the restrictive laws(under the guise of protection)which are traveling towards us,

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Lyme disease sufferers theirconnection to the world runs through the wires of their com-puters. Could I worm into thehomes of these people throughInternet connections to interestthem in the Forest Lake event?Because Lyme disease sucksaway brain cells and financialresources I needed somethingeasy and free to involve Lyme-suffering cyberspace friends.

In a Lyme Net(www.lymenet.org) message Iasked for "paper participants." Iasked people affected by...Lyme disease--"[who] can'twalk to the mailbox let alonecome to Minnesota to walk orrun in an event"--to send intheir names. I promised eachname sent to me would be writ-ten in a Lyme-green paper cir-cle along with the county andstate of each paper participant.Name circles would be physi-cally carried on the Forest Laketrail by people walking andrunning in the event.

Names trickled in. Myposting directions were poor,another step in the dark. I re-considered my original mes-sage. My thoughts of the Lyme-Walk's paper participants cen-tered on people visibly crippled

by Lyme disease but I realizedthe illness cripples in otherways.

I enlarged the circle ofLyme by writing a reply to myown posting: "You don't haveto be in awheelchairor walk witha cane.Maybe youcan't drive acar anymore, or youcan't returnto the jobyou hadbeforeLyme, oryou weresick in bedwith Lymebut you'rebetter now.You counttoo!"

Names filled my email.I wrote back to every sender.

Later, in response to theemail plea for more names sentby a friend who strayed frommy original message, peoplesent in names of family mem-bers who didn't have Lyme dis-ease but were affected by thesickness of one family member.

They let me know they wouldbe walking or running inMinnesota for their loved one ifthey could. Another considera-tion. The circle of Lyme diseaseexpanded outward.

Lyme disease supportgroup leaders began collectingnames for me. I fell behind inmy email responses and strug-gled to write every name in anew paper circle.

When names poured infrom thirty-two states,Canadian provinces, andEngland, the circle of Lyme

disease heartache left tears onmy computer keyboard. Peoplewrote of whole families infect-ed with Borrelia burdorferi--theLyme-disease carrying bacteria,of job loss, lost family connec-

tions andfriends, offinancialdevastation,and misdi-agnoses.

OneWisconsinwoman,Mary Jean,had beenmisdiag-nosed withMultipleSclerosisfor twenty-five years

before shelearned shehas late-

stage Lyme disease. I took hername for myself. Her husbandalso has Lyme disease. I tookhis name too.

As I pinned and stapledpaper participants to t-shirts,jackets, and the numbers run-ners and walkers were wearingduring Saturday's event, Iexplained, "For many people

with Lyme disease, knowingyou are carrying them with youalong this trail is the biggestand happiest thing that mighthappen to them in months."

My words scored bull's-eyes. People grew serious andthoughtful. They didn't knowwhat to say as they took on thenames but somehow the mes-sage of the paper circles spreadthroughout the crowd. A stam-pede of people rushed forwardasking for names to carry.

Later, as I walked thetrail myself, I saw runners andwalkers looking at the circles ofpaper, acknowledging at leastfor a moment the pain of a per-son suffering from Lyme dis-ease.

When the walkers andrunners were gone and it wastime to tear down tents andpack away tables and chairs,Jill's husband held out a bou-quet to me: "Thank you fordoing that with the names. Itmade this more than what washere; it was a spiritual event."

To view more MNLyme-Walk photos visitwww.minnesotalymeactiongroup.com phapha

“Run”... cont’d from pg 1

5K race participants wearing the names of Lyme patients who were toosick to run for themselves. Names of Lyme victims came in from all overthe country and were worn on the shirts of the race particpants.

lethargy, sleepiness and hunger.With something this cheap andeasy to get, it's no wonder kidsas young as 11 are gettinghooked on it.

It is a growing problem.Arrests for possession of thedrug have jumped up 80% thisyear alone, and the drug hascaused a 600% jump in heroineaddiction. So far, thedealers' handiwork - a powderknown to be snorted in schoolbathrooms or in the backs ofclassrooms - has resulted inabout 200 criminal casesagainst students from Marshand Cary middle schools andW.T. White, North Dallas andThomas Jefferson high schoolsin Texas.

"There's nothing newabout marketing drugs to kids,"experts say.

Years ago, a similarproduct was called "Chiva," amixture of heroin and brownsugar. "Like cheese, Chiva wasparticularly popular in largelyHispanic communities,"recalled Phil Jordan, the formerhead of the Dallas DrugEnforcement Administrationoffice.

"In the end, cheese isnothing more than heroin, andheroin is heroin, is heroin," hesaid. "Drug pushers are no dif-ferent than advertisers. They'reconstantly looking for newways to market their poison,and so now they call it Cheese.But it's the same old garbage,different name and deadlier," asJordan reported in the DallasMorning News.

Heroine is being thrownat kids in different ways and

has been for many, many years.Still very few people do any-thing to stop the problem. Someofficials deny that Cheese is agrowing trend, and there isn'tmuch information available tokids about why it's dangerous,or how they could die on theirfirst use of the drug. One Dallasnews station reported that somedrug pushers are addingNestle's Strawberry drink mixinto the Cheese in order to lurea younger crowd with "straw-berry flavored Cheese".

Cheese is not an origi-nal drug mix, though. Last yearthere was a scare with PeptoBismol mixed with liquid ecsta-sy, which was called "Pickles",and supposedly there's a newdrug about to hit the streets, amixture of flour, methampheta-mines, and oatmeal, called

"Sesame Seed Bun".So my word of advice

to my teen audience and theirfamily is to be cautious andaware. This is a deadly drug.Don't do it. It will kill you.You may never have a secondchance. Your first use ofCheese just may be your lastuse and your last breath. phapha

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“Say Cheese”...cont’d from pg 4

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tion. Thexton began his investigation by demanding Hofmann's patient records,including the personal medical files of many of his Lyme patients. Thexton statedduring a phone call to Hoffmann, "It has come to my attention you have very manyLyme patients," alerting Hoffmann to the likely motivation behind the case. "Thiscase is really about treating Lyme patients, not the fact that I wouldn't give a patientnarcotics," says Hoffmann.

Hoffmann is one of a growing number of "Lyme-literate" physicians in thecountry, who do not follow the Infectious Disease Society of America's (IDSA)recently published "guidelines," drafted by fourteen IDSA members, in a processwhich is currently under investigation by Connecticut Attorney General RichardBlumenthal's office for possible anti-trust violations.

Hoffmann instead follows evidence-based guidelines published by theInternational Lyme and Associated Diseases Society (ILADS), a group of Lyme-treating physicians with diverse backgrounds, whose guidelines, (both researchedand clinically-proven as beneficial), have saved the lives of countless Lyme patientsabandoned by the IDSA's treatment philosophy, especially the viewpoint that"chronic" Lyme disease does not exist, and that long-term treatments are unneces-sary. Lyme patients who have been sick for years disagree with the IDSA philoso-phy, and seek out physicians more knowledgeable than most and who are not afraidto treat what are often a blend of complex, systemic infections -a combination ofLyme disease and "co-infections", other infectious diseases making treatment andrecovery much more difficult.

Thexton's office appears to be rushing the Hoffmann case, delivering thedoctor a demand to respond by Tuesday, May 15th-just 6 days after Hoffmannreceived notice of the investigation. Before any real fact finding in the case, (muchless a hearing scheduled), Thexton already presented Hoffmann with a "FinalDecision and Order" containing "Findings of Fact" that Thexton drafted. Hoffmannfeels the stipulations offered by Thexton are more an effort to scare him into set-tling and have nothing to do with the sound practice of medicine. For example,Thexton states Hoffmann would be ordered to pay nearly $4,000.00 in "fees" forThexton's investigation of allegations which are not clearly defined. The idea ofprosecuting a physician for failing to prescribe narcotics to a patient who was eval-uated and concluded as drug-seeking, and then to demand patient records and bedisciplined for those practices, or for treating a select group of patients is "astonish-ing," relayed by Hoffmann in a recent interview. "This investigation was about oneissue, but now seems to be targeting my Lyme patients," said Hoffmann.

Word of the investigation traveled quickly as sympathetic patients contactedLyme advocacy groups and key officials, overwhelming Thexton's office with theirconcerns. The prosecutor responded to this activity in a letter dated May 11,addressed to Hoffmann. "I have been barraged by communications, almost entirely

from lay people outside Wisconsin, which allege that you are being investigatedbecause you treat Lyme disease, and are going to lose your license because of this,"said Thexton's letter. "I wish to make clear that this is not the reason for this inves-tigation. This investigation was opened because of your prescribing of controlledsubstances. It had nothing to do with Lyme disease," wrote Thexton, contrary toHoffmann's statements. The issue of course, is not what caused the investigation tobe opened, but what is motivating Thexton to continue the case, given Thexton'sown words to Dr. Hoffmann about Lyme disease treatment and treatment methodswhich follow a "respectable school of medical thought."

Hoffmann's patients are speculating as to what that "respectable school ofmedical thought" might be, as Thexton has previously been connected to"Quackbuster" Stephen Barrett, and Robert Baratz through DLR cases againstWisconsin Physicians Eleazor Kadile (Green Bay), Richard (Rick) Vander HeydenDDS (Green Bay) and Stuart Suster, MD (Milwaukee). Stephen Barrett operates theweb site, Quackwatch.com, where Infectious Disease Society of America (IDSA)associate Edward McSweegan posts a Lyme disease web page criticizing [ILADS]Lyme treatment guidelines. Hoffmann follows ILADS treatment recommendations,which are contrary to the IDSA treatment guidelines under investigation.

"The allegations of this investigation have no basis, and if these proceedingsare allowed to continue, this will be the end of the private practice physician, andprobably Lyme physicians," Hoffmann said when referencing the apparent trend byThexton to attack small-town physicians like Hoffmann who have very limitedmeans of mounting a legal defense. Hoffmann's clinic is the last privately-ownedand operated clinic in northern Wisconsin, and he is one of only a handful of"Lyme-literate" physicians in the state.

A legal defense fund has been established to help fight the allegations lob-bied against Dr. Hoffmann, who has tremendous support rallying behind him frompatients, especially from the Lyme community. "What is the point of having aproclamation raising awareness of Lyme disease if the only purpose it serves is tospotlight the removal of our treating physicians by someone in the Governor'soffice," said a concerned Wisconsin Lyme patient, "why doesn't Thexton leave thegood physicians alone, and take to task those who are failing to diagnose Lymepatients in the first place." Perhaps the Governor's proclamation has served to raisemore than just awareness about Lyme disease-it is underscoring to patients theimportance of fighting to keep the relatively few Lyme-treating physicians we havewho oppose guidelines that seem to define the disease out of existence.

Please visit www.Sewill.org for information on contributing to Dr.Hoffmann's legal defense fund, for information on who to contact in support of Dr.Hoffmann, and to purchase fundraising apparel to benefit his defense fund.. phapha

“Lyme Doc”...con’t from pg 1

and advance scientific knowledge, makerelevant information available topatients, colleagues, and the public."10

This has unfortunately beenreplaced with an apathetical goal tomerely provide so-called adequate care.The current reimbursement system inAmerica fosters this thinking, as theworst physicians are financially reward-ed by insurance companies. The bestphysicians are continually fighting toprovide cutting edge treatments andsuperior care that the insurance compa-nies deem not medically necessary. Eventhe best physicians eventually get worndown andare forced tocapitulate tothe currentsubstandardcare.

Thiswas clearlydemonstrat-ed in a studypublished inthe March2006 editionof The NewEnglandJournal ofMedicine,entitled "Who is at Greater Risk forReceiving Poor-Quality Health Care?"This study found that the majority ofindividuals received substandard, poor-quality care. There was no significantdifference between different income lev-els, or between individuals who haveinsurance and those who do not. It usedto be the case that only those in lowsocioeconomic classes without insurancereceived poor-quality care. Insurancecompany restrictions of treatments anddiagnostic procedures have caused thesame poor care afforded to those of lowsocioeconomic status without insuranceto become the new standard-of-care.11

Most physicians will satisfy theirrequired amount of continuing medicaleducation (CME) by going to a confer-ence a year, usually at a highly desirablelocation that has skiing, golf, boating,etc. A physician is rarely monitored as to

whether he or she actually showed up forthe lectures. One must also understandthat the majority of conferences [organ-ized] by medical societies are sponsoredby pharmaceutical companies. Thesepayments are called 'unrestricted grants',in that the society has free rein to dowhat it wants with the money and canthus claim there is no influence on lec-ture content by the pharmaceutical com-pany. The problem is that if the societywants to continue getting these unre-stricted grants from the particular com-pany, they had better provide contentthat is of benefit to the pharmaceutical

company thatpaid for thegrant.

Consequently,ground break-ing researchthat goesagainst the sta-tus quo anddoes not sup-port the drugindustryreceives littleattention. Thedoctor mustactively search

for these studies, which only a few per-cent are willing to do on a consistentbasis.

There is clear evidence and con-cern that published research is clearlytainted by whomever is the financialsponsor of the study.

A study published in the Journalof Psychiatry (and later discussed in theMay 2006 edition of Forbes magazine)states that the most important determi-nant of the outcome of the study is whopaid for it.

An analysis in the Archives ofInternal Medicine reviewed 56 studies ofpainkillers - and not once was the spon-sor's drug deemed inferior. In addition toreading the conclusion of the study, aphysician must read the entire study andreview the data with a critical eye, whichis rarely done. phapha

References1. Lenfant C, New England Journal of Medicine. "Clinical Research to ClinicalPractice - Lost in Translation" 2003;349:868-874.

2. William Shankle, MD. Key Note Presentation. International Conference on theIntegrative Medical approach to the Prevention of Alzheimer's Disease. Oct 11,2003.

3. Phillip Pizzo, MD. Stanford Medical Magazine. Stanford University School ofMedicine.

4. Begley S. "Too Many Patients Never Reap the Benefits of Great Research."Wall Street Journal. September 26, 2003.

5. "Science Knows Best." Daily Policy Digest. National Center for PolicyAnalysis. Sept 26, 2003.

6. Niteesh. C, et al. "Systematic Review: The relationship between clinical experi-ence and quality of health care." Annals of Internal Medicine. February 15, 2005.

7. Balas, E.A. "Information Systems Can Prevent Errors and Improve Quality.Journal of the American Medical Informatics Association. 2001; 8(4):398-9.

8. National Institute of Medicine Report, 2003b

9. California Assembly Bill Number: AB 592 Amended Bill Text; Amended inAssemby April 4, 2005, Introduced by Assembly Member Yee February 17 2005.An act to amend Section 2234.1 of the Business and Professions Code, relating tohealing arts.

10. The Principals of Medical Ethics adopted by the American MedicalAssociation in 1980.

11. Asch SM, et al. "Who is at Greater Risk for Receiving Poor-Quality HealthCare?" New England Journal of Medicine. 2006;354:1147-1155. ___

* Reproduced with the generous permission of the author, Dr. Kent Holtorf, MD.All rights reserved. For more information about the Torrance, California-basedHoltorf Medical Group Center for Hormone Imbalance, Hypothyroidism, andFatigue, visit their website at http://www.HoltorfMed.com or phone 310-375-2705. See also "Kent Holtorf, MD, on Treating Chronic Fatigue Syndrome &Fibromyalgia - An Update" at http://www.immunesupport.com/library/showarti-cle.cfm?id=4532

Note: This information has not been evaluated by the FDA. It is not intended toprevent, diagnose, treat, or cure any illness, condition, or disease. It is very impor-tant that you make no change in your healthcare plan or regimen without research-ing and discussing it in collaboration with your professional healthcare team.

Dr. Kent Holtorf, MD, is Medical Director of the Holtorf Medical Group Centerfor Hormone Imbalance, Hypothyroidism, and Fatigue in Torrance, California.*He specializes in treating CFS and FM patients.

Most physicians will satisfy theirrequired amount of continuingmedical education (CME) bygoing to a conference a year, usu-ally at a highly desirable locationthat has skiing, golf, boating, etc.A physician is rarely monitored asto whether he or she actuallyshowed up for the lectures.

“Why”...cont’d from pg 7

FEATURES


going to bed and in some casesbefore your session. Make a listof all the medications that youare taking, and make sure thatyou give them to the technicianbefore your sessions. There areseveral absolute rules whichpatients must follow duringHBOT. Smoking is not compat-ible with HBOT. Once HBOThas been prescribed, patientsshould stop the use of tobaccoin any form until therapy iscomplete. This "no smoking"rule applies to cigarettes, pipetobacco, and cigars, as well aschewing tobacco and snuff. If aperson just cannot stop the useof tobacco, HBOT will not beeffective. Cosmetics such ashair spray, nail polish, perfume,or shaving lotion containingpetroleum, alcohol or oil baseare not allowed while in the

hyperbaric chamber. However,those products may be reap-plied after each treatment. It isimportant to discuss all skincare products with the HBOTtechnician so they may assuresafety. All patients are providedwith 100% cotton scrubs towear during treatment. No arti-cles containing nylon or poly-ester can be worn in the cham-ber. Watches and other jewelry,dentures, contact lenses andother prosthetic devices willalso need to be removed beforetreatment. No titanium glasses,heating patches or dressingsthat have not been approved bythe technician are permittedduring treatment. No batteryoperated items are ever allowedin the chamber. All medicalrecords, prescription drugs,over the counter drugs, vita-mins, and herbs are carefullyreviewed for any contraindica-tions. Additional tests may beordered such as a chest x-ray,pulmonary function testing,examination of ear drums, pre-scriptions for sinus issues, etc.All patients should be exam-ined by their physician, and allpatients will attend an orienta-tion session with a CertifiedHyperbaric Technician (CHT)or RN in the chamber.

What are the risks of a HBOdive?

Hyperbaric therapy isgenerally safe and well tolerat-

ed. Most side effects are mildand reversible, although severeconsequences can occur in rarecases. There are risks associat-ed with HBOT, similar to somediving disorders. Pressurechanges can cause a "squeeze"or barotrauma in the tissuessurrounding trapped air insidethe body, such as the lungs,behind the eardrum, insidepara-nasal sinuses, or eventrapped underneath dental fill-ings. This is why a completephysical is essential to mini-mize theses risks. Middle ear barotrauma is themost common side effect ofHBOT. It is prevented in mostpatients by teaching the auto-inflation maneuver or by use oftympanotomy tubes for thosewho cannot auto- inflate.However, this rarely is a prob-

lem. Sinus squeeze is seen lessfrequently than middle earbarotrauma. The nurse on dutywill examine patients and con-tact your doctor if necessary.Prescriptions for antihistamines,decongestants, and/or nasalspray should be given by yourdoctor. Temporarily, the treat-ment could be postponed.However, with slow compres-sion and decompression, usual-ly there are no problems.

Vision changes (myopiaor nearsightedness) caused byswelling of the lens, this ismore a temporary side-effectthan a complication and usuallyresolves in two to four weeksfollowing completion of HBOT.

Myopia is a reversiblecomplication of repeated expo-sure to HBOT. Even when pro-gressive, myopia does occurduring a series of HBOT thera-pies, after treatment the visualacuity changes reverse com-pletely. Acceleration of growthin existing cataracts is a com-plication of chronic long-termexposure at pressures over 2ATA. Published reports as wellas extensive clinical experienceindicate that new cataracts donot develop with in the seriesof 30 to 50 therapies that arecommonly used in the USA.

Pulmonary and neuro-logical manifestations of oxy-gen poisoning are often cited asmajor concerns with HBOT.Oxygen tolerance limits thatavoid these manifestations are

well defined for continuousexposures in normal people.Pulmonary symptoms are notproduced by daily exposures tooxygen at 2.0 or 2.4 ATA for2.0 or 1.5 hours respectively.The incidence of oxygen con-vulsions when using similarexposures is about 1 per 10,000patient therapies. Even whenoxygen convulsions do occur,there are no residual effects ifmechanical trauma can beavoided. Although rare, one of the risksof HBOT is oxygen toxicitywhich is treatable by removingthe oxygen.

It is common to take afive minute "air break" to avoidoxygen toxicity and breathingcompressed air through a spe-cial mask inside the chamber.Pulmonary barotrauma during

decompression may rarelyoccur. Patients with airwayobstruction have an increasedrisk for pulmonary barotraumaduring decompression. Patientsmust be cautioned againstbreath holding during decom-pression. All patients shouldattend a private orientation ses-sion accompanied by a CHT ora R.N.

What happens if you feelclaustrophobic?

Reassurance, emotionalsupport and entertainment go along way in preventing confine-ment anxiety. In some cases, amild sedative may be required.If you still have anxiety duringthe treatment, your techniciancan safely and gradually bringyou up from pressure depth.Each chamber is equipped witha telephone system, so yourtechnician can hear you andtalk to you while you areundergoing treatment. There isalways a technician by yourside monitoring you.

Can you bring books, food, orCD's in the chamber withyou?

Many centers will allowyou to bring items into a multi-ple chamber. However, theUndersea and HyperbaricMedical Society (UHMS) thatgoverns hyperbaric medicine

restricts this. It is contraindicat-ed to bring any item into amonoplace chamber where youwill be surrounded by a pureoxygen environment. Mosthyperbaric facilities have someform of entertainment such asmovies or CD's that can beused. TVs are viewed throughthe glass chamber with specialspeakers inside the chamber.

Can you get the bends likeSCUBA divers do?

Air embolism is a rarebut possible occurrence. That iswhy it is essential to have atrained hyperbaric technicianoffering you this therapy. Youwouldn't go to someoneuntrained to take an x-raywould you?

Will you herx from HBOT?

Most Lyme patients doexperience some form of aJarisch-Herxheimer reactionduring HBOT. It has been notedanecdotally that a few divershave had "reactions" seeminglyout of nowhere and later wenton to test positive for Lyme. Ican not tell you what the mech-anism of action is however. Itappears to be a herx brought onby the pressure. Also, somepeople respond to the oxygenimmediately. Others do notherx for several days afterward.It is not unusual in either case.You should start to see herxreactions within the first tensessions. Some herx immediate-ly and it is not uncommon toherx while in the chamber. Youshould see gains by forty ses-sions and in order to maintainthose you should do a mainte-nance session at least onceevery 4-6 weeks.A Herxheimerreaction occurs when the Lymebacteria are killed off quickly,and the body suddenly has todeal with a tremendous amountof toxins. The higher theamount of toxins, the strongerthe herxheimer reaction will be.The Herxheimer reaction canbe used as a clue to help clini-cally diagnose the presence ofBorrellia Burgdorferi.

Are there any contraindica-tions?

Some commonly usedmedications may potentiate sideeffects from HBOT. They mustbe limited or substituted withanother drug. These include:high doses of aspirin and pred-nisone (or similar cortisonetype drugs), and morphine, oralcohol within 8 hours of treat-ment. Some of the drugs thatare contraindicated with HBOTare Doxorubicin(Adrianmycin), Bleomycin,Cis-platinum, Disulfiram(Antabuse), and Insulin. HBOTcan lower blood sugar, and sohypoglycemic patients requireblood monitoring and properdiet. Emphysema with CO2Retention (COPD) is con-traindicated. Pregnant womenare not advised to undergoHBOT unless it is an emer-gency situation. Patients with

high fevers should postponeHBOT until the cause is found,and the patient is stable. Anabsolute contraindication tohyperbaric oxygen therapy isuntreated pneumothorax.

Hopefully this questionand answer will help any ofyou who are interested in doingHBOT treatment. It made atremendous difference in myhealth, and made my Lyme dis-ease protocol more effective.Although HBOT can be expen-sive and time consuming, ithelped me make tremendousstrides in getting my healthback. I never experienced anyside effects during my 200treatments. In my opinion,HBOT is a safe and suitableoption for anyone sufferingfrom chronic Lyme disease.Please feel free to contact JuliaSudylo R.N, CHT on the web athttp://www.juliashbot.com/

For more information onHBOT and Lyme disease,please see the following refer-ences.

http://www.personalconsult.com/articles/hyperbaricoxygenef-ficacy.html

http://hbot4u.com/lyme.html http://www.hbotreatment.com/Lyme- Preliminary in vitro andin vivo findings of hyperba.pdfhttp://www.drneubauerhbo.com/Lyme.pdf. phapha

Photo printed with permission from Seachrist

“Diving Deep”...cont’d from pg 6


BOOK REVIEW

years ago. After full treatmentfor the Bartonella and theLyme, she is finding it easier tothink of her marriage as havinga fresh start. She is no longerstuck on problems from manyyears ago.

Excess Irritability

Tom has slowly becomemore hostile over the last fif-teen years. He scares his wifewith his temper. She reports attimes that he "shorts out." He isunsettled if faced with morethan one topic or activity at atime. Occasionally, modestsounds, sunlight or people talk-ing all at once anger him. Oftentheir children speak simultane-ously-it seems to cut him withan invisible knife. So he yells atthem.

He is very hostile at theend of a work week, and seemsthin-skinned, with little emo-tional reserve for the weekend.He improved for four monthswith a new generation antide-pressant and an anxiety medica-tion, but dose increases did notregain his improvement. Hewas PCR Bartonella positive onhis fourth urine test at MedicalDiagnostic Laboratory and hada positive Western Blot withIGeneX. After treatment, hiswife and older daughter reportthat he is 75-80% improved inhis mood. He opted to stay onboth his antidepressant andanxiety medications, but at 50%of the initial required dose.

Eccentric Personalities

Doug is called "unusu-al" by his loved ones, and isdespised by many people in hiscompany. He is hard to under-stand. He is clearly self-cen-tered, but something else ispresent. He assumes others inthe company and communitywould do him ill. He does notseem to care for anyone but hiswife and kids. He is smart, butsome of his activities are fairlybizarre. He takes credit forprojects obviously designed byothers. He hides behind cornersto listen to other employees. Hefeels he has wisdom on medicalmatters that he has not evenstudied. His four daughters areall Lyme positive. He refusesany testing.

Road Runner

Ellen was always avibrant person, but in the lastfour years she seems wired andunusually intense. Her person-ality is like a fire hose, and sheis uncomfortable unless she ismoving and doing. She has nodepressive restlessness or anxi-ety. She is most comfortabledoing fifteen things at once,and living frenetically. She isLyme positive along withanother member of her house-hold. She has been called,"hypomanic" and "an over-whelming personality," but shehas no insight into this

increased eccentric energy, andavoids antibiotic treatment orother respected Lyme treat-ments.

Forgetful

Barbara jokes about hermemory and about her "age."She is only forty-six. Her moth-er has a better memory! Whilememory is related to manyparts of the brain, the frontallobes are also included. She isLyme and Babesia positive.

Organization Extremes

Tony is a computer techwho has always liked someorder. Yet two years ago after afishing trip to upper New YorkState, his housemate andfriends noticed he graduallybecame more unsettled with aslight "disorder." Changes thatbother him more include a plateleft out, a bill paid too close tothe due date, unexpected mod-est changes to his budget, andcar cleanliness. He was foundto be positive for Lyme,Bartonella and Erhlichia.

Marianne's home hasslowly become very sloppy anddisorganized. She lives alone,since no one has wanted to livein such a messy home. In pastyears she has managed differentbusinesses, and so clearly thisis a lost ability. She is Lymeand Babesia positive, in addi-tion to having regular exposureto outdoor water with toxic

algae. After treatment withantibiotics, Actos andcholestyramine, and anothershort-term anti-inflammationagent, along with removal fromher water exposure, she eventu-ally could manage her home,bills and life better.

Regressed Feelings & Thoughts

*Kimberly has slowlybeen feeling a need to be closerto her family and especially hermother for reasons she does notunderstand. She finds a deeperneed for affection, "beingheard" and time alone with hermother. Nothing in her life cir-cumstances seems sufficient toexplain this change. She feelsher feelings towards her familyand mother are now "clingy."She is Lyme positive.

Kevin used to be mod-erately open-minded, but nowhe seems to think in caricatures.People are smart or stupid,good or bad, mature or childish,black or white. People are forhim or against him, supportiveor drags. He is Lyme andErhlichia positive, in additionto having exposure to indoortoxic mold in his second homein the mountains.

Dead Creativity

Lisa has a good sense ofhumor and likes to designflower beds. She also is anexceptional dog breeder. Overthe past years she has become

less spontaneous. She mightthink of a quip, but by the timeshe gets it out, the timing ispast. She occasionally plants afew plants, but she has gonefrom annuals to perennials-shedoubts she will have the driveto do even those next year. Shehas asked her niece to handlethe breeding strategy, and tellsherself this is because of herniece's experience. But herniece does not have these gifts.Lisa is Lyme and Babesia posi-tive.

This list is not complete.Yet hopefully it will help you tosee areas of residual charactertrouble can have a medicalfoundation. Further, it is hopedthis list will help your family,parents, siblings, adult childrenand close friends expand theirdiscernment of mold toxinexposure, or tick and flea-borneinfections. This material is writ-ten so that people will noticeneurological and psychiatricsigns and to "see themselves."Since the brain is the most sen-sitive organ, it is often the firstplace to show signs or symp-toms of these illnesses. Earlierdiagnosis means a better out-come for you if you are infect-ed, and your loved ones whoare infected. phapha

“Personality & Infection” ...cont’d from pg 9

A Book Review of Nutrition and Physical DegenerationBy Weston A. Price, D.D.S.

by Marjorie Tietjen

The foods we choose toeat, and the manner in whichwe prepare them, directly deter-mines our health and the healthof our children and grandchil-dren. Today it seems dietaryadvice shifts with the wind. Faddiets and even advice from oursupposed experts in the field ofnutrition, is often based onmonetary gain. As a result weare often in a state of confu-sion, perplexed as to which rec-ommendations to follow. Nosooner do we become certainthat "this is the right diet", thenthe opposite will be presentedto us as fact. Everything iscontradictory.

I have often wonderedwhy animals in the wild, knowjust what to eat to keep them-selves healthy and strong, yetmodern humans seem to haveno clue. Having basically sev-ered our partnership withnature, we have lost our God-given intuitive knowledge.

I am going to share withyou some common sense ideasfrom the book Nutrition andPhysical Degeneration by

Weston Price. Dr. Weston Price, who

was a dentist, traveled aroundthe world in the 1920s and 30scomparing the diets of remoteindigenous groups to those wholived in the more civilizedareas. Because Dr. Price was adentist, he focused much of hisattention on facial and jawstructure. However, he alsoobserved disease susceptibilityin both groups. He took hun-dreds of photos which comparethe dental arches, dental decayand facial formations of thoseeating their pure native diets tothose who had been introducedto the refined foods, such aswhite rice, white flour, refinedsugar and pasteurized milk. Thedifferences were dramatic andsometimes horrifying.

In recent years we havebeen conditioned to believe thatmeat and other animal productsare fatty and unhealthy and thatthis is what causes heartattacks. Weston Price shareswith us, from first hand obser-vation and research, that aslong as the animals are fed theirnatural diets, then they willconfer their immunity from dis-ease to us. People often wonderif humans benefit from includ-ing at least some animal prod-ucts in their diets. Here is aninteresting quote from page142, "Several of the tribesneighboring Ethiopia are agri-culturists and grow corn, beans,millet, sweet potatoes, bananas,Kafir corn, and other grains, astheir chief articles of food.Physically they are not as wellbuilt as either the tribes using

dairy products liberally or thoseusing fish from the fresh waterlakes and streams. They havebeen dominated because theyposses less courage andresourcefulness."

The book speaks of eat-ing meats raw, at times, andespecially the organ meats, topreserve their enzymes andother unidentified factors.Another controversial exampleof consuming raw foods wouldbe using uncooked and unho-mogenized milk for drinkingand cheese making. I wouldhave to agree that drinkingunpasteurized milk from facto-ry raised cows would be a dan-gerous prospect. The animalsare kept in very close quarters,fed grain instead of their natu-ral diet of fresh grass and aregiven antibiotics and injectedwith hormones. Because theyare being fed a food which ishistorically foreign to their bod-ies, their immune systems suf-fer and they acquire diseaseseasily.

Again...they pass ontheir state of health to us. Cowswhich are allowed to graze inthe fields and fed either nograin or a minimum of grain,are mostly healthy and freefrom disease. Unheated milkfrom certified farms rarelycauses problems.

Homogenization breaksup the fat particles in the milkto a very fine size. It is suspect-ed that this process makes itpossible for the fat particles togo through the artery walls,which wouldn't naturally occur.Homogenization is primarily

for convenience purposes so itcould easily be done away with.Why do humans keep thinkingwe can improve on nature?

Many indigenous ruralgroups would not allow girls tomarry until they received a dietconsisting of special strength-ening foods. Six months ofincreased nutrition was usuallythe minimum. These people,without degrees in chemistry,nutrition or biology, wereinstinctively aware of whatfoods pregnant women neededto produce sturdy, well formedoffspring. Such foods assalmon eggs and organ meatswere considered to be highlydesirable.

The author noticed thatthere were no doctors or den-tists in the outlying areas wherepeople consumed food that waslocally available andunprocessed. There was also noneed for jails because therewere no criminals. Priceincludes photos of criminalswhich show the typical under-development of their facialstructure, which also correlatedwith their diets.

It's simple.....those wholived in the remote areas awayfrom processed food, were thehappiest and the healthiest.

Dr. Price presented avery interesting observation.Not only did those who ate themodernized diets have mal-formed dental arches (notenough room for their teeth)but their chins were receding,their noses pinched, with sinus-es affected and other abnormal-ities. It made sense to me that

this is one reason we have somany mouth breathers and peo-ple with sinus problems. Theshape of the whole skull isoften determined by maternalnutrition and I would like topresent a specific case fromPrice's book.

Dr. Price paid particularattention to a sixteen year oldboy who had Down's Syndrome(or what they termed mon-golism) and had been born toan older mother who was sicklyat the time of his conception.Down's Syndrome often occursin children of mothers who areover 40 or to mothers experi-encing reproductive exhaustion.Dr. Weston Price felt that per-haps the crowding of the pitu-itary gland caused by constric-tive jaw structure, contributedto the underdeveloped sexualorgans and mental capacities.

Through surgery Dr.Price widened the boy's maxil-lary arch, which resulted inimprovement of the mongoloidfeatures and a definite increasein mental abilities. The boywore an appliance in his mouthto keep the bones in place butwhen it subsequently becamedislodged, he reverted andmany of his previous abnormalcharacteristics returned.

I have only touchedupon some of the valuableinformation in this book of over500 pages and with 154 photosand illustrations. This monu-mental work is a must read foranyone who is concerned abouttheir own health, the health oftheir families and the future of

“Book Review”...cont’d pg 19

Dr. Schaller has authored 20 med-ical books. He is currently prepar-ing the most up to date textbook onBartonella, which he feels is the topvector infection in the world--possi-

bly more common than Lyme.

IN THE NEWS


Calling All Teenagers!!The PHA has a place for you!

Your Place in the Spot Light!

Have you ever wanted to write and justget your feelings down on paper?Have you everwanted your voice to be heard?

The PHA wants to hear from you! We arenow accepting article submission from Tweens& Teens!

Teen Perspectives:

We are looking for articles relating to teen healthissues and social problems teens face.

* Dealing withChronic Illnesses* Eating Disorders* “Cutting” or Self Injury*Living with parents who are Chronically Ill

Send article submissions to [email protected] in a Word doc format.

Murray, a mother in Old LymeConnecticut who identifiedLyme arthritis in kids in herarea called my wife and I up,my wife is a psychiatrist, andsaid that someone should doresearch on the psychiatricaspects of Lyme disease. That'show it got started.

In your opinion, why hasn'tthere been more progresswith diagnoses and treatmentof Lyme disease?

Treatment studies arehard to do and very expensive.The NIH (National Institute ofHealth) committed funds forthree major studies. I think thatmore studies will be fundeddown the road, but the enor-mous work it takes to do such astudy is daunting - especially ifyou are using criteria that areextremely rigid. It makes ithard to find patients. The studythat we did was unbelievablytime consuming and took mas-sive amounts of energy.Honestly, I don't know if Iwould want to commit thatamount of non-stop, 7-day aweek work to a study again. So,any study I design in the futurewill be easier.

If you would, please comment

on the current testing avail-able for Lyme disease.

The current testing ishelpful but not definitive - youcan have false positives andnegatives.

What is your opinion of theILADS versus the IDSA'sguidelines issue?

Both sets of guidelineshave limitations. The IDSAguidelines do an excellent jobof summarizing acute andearly-disseminated Lyme dis-ease. In the chronic Lyme dis-ease domain, they don't sum-marize the current literaturevery clearly or very well. So Idon't think the guidelines arethat helpful for chronic Lymedisease.

ILADS, their mainfocus is on chronic Lyme dis-ease and so they have a differ-ent treatment approach thatinvolves longer courses ofantibiotics. They did a nice jobof summarizing what's knownabout chronic Lyme disease intheir guidelines. But, the prob-lem with their guidelines is thatthere is really no clear endpointof treatment, except for antibi-otics until two months after allsymptoms are resolved. That

could imply that a person withrelapsing, remitting symptomsshould be on antibiotics untilall of those stop and that sort ofignores the reasonable possibil-ity that a number of patientshave post infection problemsthat aren't related to activeinfection.

Is Lyme disease, in your opin-ion, sexually transmitted?

Not that I know of.

Do you think the new centermay consider doing aresearch study on the possi-bility of sexually transmittedLyme disease?

It wouldn't be that hardto do a study on that. It's notgoing to be one of our primaryaims because if it were sexuallytransmitted, how would it besexually transmitted? Fromblood (most time there's notblood involved in sexual inter-course), presumably by seaman(which is something someonesuggested in the past), so thatcould be studied. I just don'tthink it's the case, so it's notgoing to be high on my list ofpriorities.

Does DNA or genetic makeup

determine the severity ofLyme disease in a person?

That's a very importantquestion. I think that gets to theheart of one of the areas thatare important in studying Lymedisease, which is what's goingon in the genetic profile ofthese patients who have devel-oped chronic, persistent symp-toms.

Why is it some patientsget a much more protracted anddifficult course and others havea much better response? Maybetheir own immune systemfights it off even without antibi-otics. Clearly this very abilityof the host response to thepathogen, and that has to bedetermined by the person'sgenetic profile, and we have onour advisory board (Dr.) ClaireFraser, the scientist whomapped out the BorreliaGenome, one of the top peoplein the world on Borrelia genet-ics. We have (Dr.) RobertWinchester who is one of theworld experts on autoimmunityand major histocompatabilitycomplexes, genetic profiles thatmay predispose to chronic dis-eases. He actually did some ofthe early work on Lyme arthri-tis. So we have some top-notchpeople who I am going to ask

to take a look at that question.

Do you have anything elseyou would like to add?

I think that the estab-lishment of a center like this isbasically a tribute to whatpatients, families, and con-cerned friends can do whenthey put their minds to it. It wasa lot of work and it requiredyears and years of fund raising,but they've done it. There'smore work to be done and morefund raising that needs to bedone, but certainly the driveand intelligence and the creativ-ity of those people has beenmagnificent and it's a veryhopeful sign for research ingeneral that the public can playa major role in helping to shaperesearch.

Brian A. Fallon, M.D.,MPH, is the director of theLyme & Tick-Borne DiseasesResearch Center at ColumbiaUniversity. He is a graduate ofHarvard College, obtained hismedical degree from theUniversity College ofPhysicians and Surgeons, andholds a master's degree inhealth epidemiology fromColumbia University.

phapha

“Research”...cont’d from pg 6

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IN THE NEWS


control experts say is a legalgray zone, skirting the edges ofan international treaty outlaw-ing the production of evensmall amounts of biologicalweapons," The Post reported.The newspaper added that:"The administration dismissesthese concerns, however, insist-ing that the [biotech research]... is purely defensive and thusfully legal. It has rejected callsfor oversight by independentobservers outside the[Homeland Security]Department's network of gov-ernment scientists and contrac-tors."

The Washington Postquoted University of Marylandweapons-expert MiltonLeitenberg as stating: "If wesaw others doing this kind ofresearch, we would view it asan infringement of the bio-weapons treaty. You can't goaround the world yelling aboutIranian and North Korean pro-grams - about which we knowvery little - when we've got allthis going on."

The Post also reportedthe new Fort Detrick bio-defense analysis center wouldencompass almost 14,861 grosssquare meters (160,000 squarefeet) of working area andaccommodate a staff of about120. The Post noted, "FortDetrick's history as the incuba-tor of germ warfare researchcasts a long shadow over thenew lab. When the fort held thePentagon's very highly classi-fied and long-abandoned bio-logical warfare program, it wasa magnet for antiwar protests inthe Vietnam War era."

In such labs, scientistscan create new strains of dis-ease for which those attackedwould have no ready defense.Bio-weapons, once loosed, arenotoriously difficult to control,and could ignite epidemics towaste and terrify civilian popu-lations. Hammond believesthere are about 400 bio-weaponagents labs across the US, someof which encounter unexpecteddifficulty when trying to com-ply with the law.

Newark, NJ PublicHealth Research Institute(PHRI) president David Perlin,told Sunshine the FBI hadasked PHRI to enter into anagreement with them so as "not[to] publicly disclose whichspecific select agent pathogens...or strains are stored at ourfacility."

Those who tend to dis-miss NIH's laxity about enforc-ing its own regulations haveonly to recall the Anthraxattacks on Congress and themedia, October, 2001. Thedeadly strain then released isbelieved to have come from aUS germ warfare lab at FortDetrick, although there is nocertainty as the FBI has neverdiscovered who was behind theattacks. Since then, the vastproliferation of such labs by theBush government has educatedmany new employees - in somecases undergraduate students -in germ warfare operations. Asa grim corollary of suchresearch, four employees atFort Detrick are known to havedied after performing biotechlab work.

Lack of transparency is

cause for concern if onlybecause of the history of secretCentral Intelligence Agency(CIA) and Pentagon experi-ments in germ warfare thatused the Americanpeople as guineapigs. In his bookRogue State: A Guideto the World's OnlySuperpower,Common CouragePress reporterWilliam Blum notedthat both agencies"conducted tests[over two decades] inthe open air in theUnited States, expos-ing millions ofAmericans to largeclouds of possiblydangerous bacteriaand chemical parti-cles."

From 1949-69, the US Army test-ed the spread of dan-gerous chemical andbacterial organisms atover 239 US populat-ed areas includingSan Francisco, NewYork, and Chicagowith no warnings tothe public or regardfor the health consequences,Blum wrote. The Pentagoneven sprayed navy warships totest the impact of germ warfareon US sailors.

And even deadlier cock-tails were secretly provided toIraqi dictator Saddam Husseinfor his war of aggressionagainst Iran. Washington deniedsupplying such bio-weaponsbut as Robert Fisk reportedDecember 31 of last year in theBritish paper The Independent,"prior to 1985 and afterwards,US companies had sent govern-ment-approved shipments ofbiological agents to Iraq,"including Anthrax.

Fisk gives the followingeye-witness account of what hehad seen then on a military hos-pital train carrying stricken menfrom the front back toTehran: "I found hun-dreds of Iranian soldierscoughing blood andmucus from their lungs- the very carriagesstank so much of gasthat I had to open thewindows- and theirarms and faces werecovered with boils."Fisk adds that, "Later,new bubbles of skinappeared on top of [thatIranian soldiers'] origi-nal boils. Many werefearfully burnt. Thesesame gases were laterused on the Kurds ofHalabja."

Thus, theReagan administration,which escalated germwarfare research and allowedthe sale of the pathogens toSaddam, took its place in thedark annals of military historyalong with Italy under BenitoMussolini, whose aviatorsdumped mustard gas on theEthiopians, and Japan underEmperor Hirohito, whoseImperial Army's germ warfareattacks killed thousands ofChinese civilians.

Because of their com-parative cheapness to manufac-

ture, biological weapons havebeen dubbed "the poor man'snuclear bomb." Yet their poten-tial may be even deadlier.Jeremy Rifkin, author of The

Biotech Century, noted a gov-ernment study in 1993 found"the release of [only] 91 kilo-grams [just over 200 pounds] ofAnthrax spores from a planeover Washington DC could killas many as three million peo-ple."

The secret operations ofthe labs' would be less ominousif the Bush administration had-n't led the fight to demolish theinternational inspection system.Oakland, CA Western StatesLegal Foundation executivedirector Jackie Cabasso warnedthat in 2001, "the US single-handedly blew apart an interna-tional system for inspections ofthese kinds of [biological] labo-ratories, a system that wouldhave made great strides towardensuring that bio-defense labs

aren't abused for offensive pur-poses." She went on to add that"having thumbed our nose atthe world, the US is now mas-sively expanding its bio-defense program, mostly insecretive facilities."

According to Boyle,author of Biowarfare andTerrorism, President Bush "sab-otaged the Verification Protocolfor the BWC" when it was onthe verge of conclusion andsuccess. He also said the US

"fully intended to get back intothe research, development, andtesting of illegal and criminaloffensive bio-warfare pro-grams." And Elisa Harris, for-

mer arms control offi-cial under USPresident Bill Clinton,told The New YorkTimes in 2003: "[Theadministration'sactions] will raiseconcerns in other cap-itals in part becausethe United States hasfought tooth and nailto prevent the interna-tional communityfrom strengtheningthe germ treaty."

Returning toHammond, Sunshine'soperative said therehas yet to be any offi-cial NIH response tohis letter of lastNovember, adding hedoubted if, "I willever get one."

The NIH wasalso asked to respondto the charges con-tained in this articlebut has so fardeclined to do so.

Pharmaceutical houses contravening NIH biotechdisclosure requirements

Abbott Laboratories of AbbottPark and Worchester;Agencourt Bioscience Corp.;Antibody Science, Inc.; BASFPlant Science; Bristol-MyersSquibb and its PharmaceuticalResearch Institute ofConnecticut; Centocor, Inc.;Chiron; Discovery GenomicsInc.; DuPont Central Researchand Development; Embrex,Inc.; Genentech, Inc.; GenzymeCorp. of Cambridge andFramingham, MA;GlaxoSmithKline, Merck &Co., Inc. and its Rahway, NJresearch site; IntegralMolecular; IntrogenTherapeutics; L2 Diagnostics

LLC; Merck & Co.Inc.; West Point;Merck ResearchLaboratories,Rahway, NJ;Meridian BioscienceInc.; Monsanto Co.Mystic, CAresearch; New LinkGenetics;NovaFlora, Inc.;NovoBioticPharmaceuticals;OSIPharmaceuticals;Pfizer Inc. andPfizerPharmaceuticals ofSt. Louis; RocheBioscience;Schering-PloughResearch Institute;SelectX

Pharmaceuticals; SeronoResearch Institution; ThirdWave Technologies; Vaxin, Inc.

Federal entities contraveningNIH biotech disclosure

requirements

The Center for Disease Control;the Walter Reed Army MedicalCenter, VA; hospitals inStratton, VA; the Jerry PettisMemorial hospital; the VAPittsburgh Healthcare System;

the Idaho National Laboratory;Lawrence Livermore NationalLaboratory; the Oak RidgeNational Laboratory; PlumIsland Animal Disease Centerof the US DHS; the USDepartment of Agriculture; theWalter Reed Army Institute ofResearch and Navy MedicalResearch Center.

Independent entities contra-vening NIH biotech disclosure

requirements

AERAS Global TB VaccineFoundation; Battelle, the CBRInstitute for BiomedicalResearch, Inc.; the Children'sHospital Oakland ResearchInstitute; the Children'sNational Medical Center; theCincinnati Children's HospitalMedical Center; the ColumbusChildren's Research Institute;the Hadassah MedicalOrganization; the LovelaceRespiratory Research Institute;the Memorial Sloan-KetteringCancer Center; the MysticAquarium & Institute forExploration; the Scripps Clinic.

Universities contraveningNIH biotech disclosure

requirements

Alabama A&M; AlbanyMedical College; Ball State;Brigham Young; Bucknell;Central Michigan; DrexelCollege of Medicine;Hackensack University MedicalCenter; Hunter College; IndianaState University; PurdueUniversity; Loma Linda;Missouri State; New YorkMedical College; QueensCollege of City University ofNew York; Rider; RockefellerUniversity; Rosalind FranklinUniversity of Medicine andScience; South Dakota StateUniversity; St. John'sUniversity; State University ofNew York at Binghamton;Brockport; Buffalo; Towson;Robert Wood Johnson MedicalSchool; University MedicalCenter of Southern Nevada;Arizona; California at SanFrancisco; Maryland;Massachusetts; Miami;Mississippi; Puerto Rico;Rhode Island; SouthernMississippi; Texas at Arlingtonand San Antonio; Tulsa; UtahState; Wake Forest; WashingtonUniversity in St. Louis; WesternKentucky; Wilkes.

Federally-funded foreign uni-versities contravening NIH

disclosure requirements

University of Sydney;Australia; University of BritishColumbia; University ofWitwatersrand; Johannesburg;South Africa;.

These listings cover almost allof the contravening entitiesreported by the SunshineProject to the NIH.

Sherwood Ross is an Americanreporter and columnist. You canreach him at:[email protected].

phapha

“Germ Warfare Research”...cont’d from pg 5

Those who tend to dismissNIH's laxity about enforc-

ing its own regulations haveonly to recall the Anthrax

attacks on Congress and themedia in October, 2001.

The deadly strain thenreleased is believed to havecome from a US germ war-

fare lab at Fort Detrick,although there is no

certainty as the FBI hasnever discovered who was

behind the attacks.

“From 1949-1969, the US Army tested the

spread of dangerous chemical and bacterial

organisms at over 239 USpopulated areas includingSan Francisco, New York,

and Chicago with no warn-ings to the public or regard

for the health consequences”

OBITUARIES


due to the excruciating pain, somy husband did most of thewalking and held up the postersmost of the time. I had to siton the stairs to light the torch,but we did it!!

Then we began theRoad Trip to Arizona. It wasvery difficult for both of us. Icouldn't help Jose drive becauseof the pain in my back and leg.He drove for hours and hourswithout falling asleep andhelped me in and out of the vanat the rest areas! We drove forthree days from Atlanta throughAlabama, Mississippi,Tennessee, Arkansas,Oklahoma, Texas, New Mexicoand Arizona. We arrived hometo Mesa on Wednesday, May16th at 5:30 p.m. The tripturned out to be 1,870 milesand we kept the torch lit theentire way!

Even though the RoadTrip was difficult for us, Joseand I appreciate the opportunitywe had to visit our friends andLyme advocates and turn ourtrip into an important benefitfundraiser to help Lymepatients and physicians. Ourlives have changed drasticallyover the past five years since Ibecame ill with chronic Lymedisease. Jose has had otherhealth problems for manyyears. We are thankful thatGod has provided this opportu-nity to us to be able to serveothers through our afflictions.We believe that the trials weexperience in this life need tobe utilized to benefit God'schildren. We pray that the 2007Lyme Disease Patient/PhysicianBenefit Road Trip will inspire

other people to give of theirtime and means to help Lymepatients and physicians.

We are very, very grate-ful to the patients and advo-cates who have donated toL.E.A.P. Seventy percent of allRoad Trip Pledges received willbe disbursed for treatment ofpatients who have applied forfinancial assistance. Fifteenpercent will be donated to Dr.Jones and fifteen percent willbe donated to Dr. Jemsek fortheir legal defense.

We will continue toaccept donations for the 2007Lyme Disease Patient/Physician Benefit Road Trip forthe remainder of this year. Ifyou are reading this article,please find it in your heart togive a little. We need everyperson to donate at least half apenny per mile, or $9.00. Ifyou are able to donate more,please do so. Treatment is socostly. Please reach out tothose suffering with Lyme dis-ease. Each small donation willreally add up, and we will beable to significantly help a fewpatients pay for their much-needed treatment. Financialassistance is not limited topatients in Arizona; L.E.A.P.provides assistance to patientsacross the United States.

L.E.A.P. Arizona is a501(c)3 non-profit, public char-ity. Your donations are tax-deductible. To donate throughPayPal, visit the homepage ofour website at www.leapari-zona.com. To donate by mail,send donations to L.E.A.P.Arizona, P.O. Box 2654, Mesa,Arizona 85214-2654. phapha

“Road Trip”...cont’d from pg 5

Delicia Gay Pevytoe-Butler of Midlothian, Tx wentto be with her heavenly Fatheron Wednesday, May 2, 2007, atthe age of 48. Gay fought agood battle to defeat Lyme dis-ease and ALS, also known asLou Gehrig's disease.

The funeral was held atthe Cowboy Church of EllisCounty and burial at LittleBethel Memorial Park inDuncanville.

Gay was born July 27,1958, in Dallas, the beloveddaughter of Leroy and FrancesPevytoe. She was an "OakCliff" girl, graduating fromSunset High School in 1976.

Gay's heart was brokenwhen she lost her sweet girl,Maggie, but Maggie is now inher arms once again.

Survivors include her husbandof 16 years, Wes Butler; herson, Jordan Hansen, who washer pride and joy; stepson,Brady Butler and his wife,Kelley; sister, Kelly McCaskilland her husband, Pat, andnephews Sam and MattMcCaskill and Nicholas Vela;brother, Jeff Pevytoe and hiswife, Liz, and nieces; grand-mother, Lillie May Farmer;mother- and father-in-law, Patand Jo Beth Butler; sister-in-law, Brenda and Darrel Hobbsand Debbie and DavidSimonton; brother-in-law,James Butler; many aunts,uncles, cousins, nieces andnephews; and her beloved pets,Babs, Annie and her donkeys,Jennie, Jesus, Applejack andRowdy.

Gay was a member ofthe DFW Lyme disease supportgroup. She began attending themeetings in November 2005after receiving her Lyme diag-nosis.

On April 18, 2007,LymeInfo.net email list moder-ator Rose passed away unex-pectedly at the age of 59. Rosehad been a chronic Lymepatient and advocate for manyyears. She was a beautiful,compassionate, loving and sup-portive person. Rose was also abeautiful singer, and sheenjoyed karaoke very much.

Karen J. "Rose" Rose served asLymeInfo moderator from2002-2007. She had been previ-ously known around the Lymecommunity for her postings onvarious Lyme email groups. Allwho knew her knew she wasvery warm, kind and dedicated.In joining LymeInfo, she waseager to make sure that theinformation needs of all Lymepatients were met. We alllearned so much as a result ofher energy and commitment.Rose was a good friend andwill be missed dearly.

Rose had written, "Forthose of you who don't alreadyknow me, let me offer a littlebackground explanation. I hadnever heard of Lyme diseaseuntil my 'official' diagnosis, andsubsequent disability, in April1995. However, my confusing,complex, and well-documentedmedical history strongly indi-cates that my Lyme infection

occurred in 1958. My husband,James Martin was diagnosed ayear later, and is also disabledfrom chronic, late-stage Lyme.His medical history also pointsto early-childhood infection.

"Since our dual-diag-noses, James and I have dedi-cated the majority of our timeand energy to Lyme research,education, and advocacy, andhave been involved with anumber of online Lyme supportgroups. We've also met a lot ofwonderful people along theway...too many people whoselives have been devastated byLyme."

Rose was a woman ofstrong faith who was loved byso many. She left behind herhusband James and belovedchildren Marc, Shelli and Amy.

He was a true inspira-

tion to countless young andbudding island musicians, serv-ing both as an artistic mentorand an example of the joys ofperforming. A warm and gener-ous man beloved by all whoknew him, James "Jimmy"Duarte's signature nod and sin-cere smile will be missed bythose mourning his passing. Mr.Duarte died peacefully at homeon Saturday morning, May 5,2007 at the age of 70.

"He loved this town. Hewas a real Nantucketer throughand through," said his wife of46 years, Jean Duarte, whoexplained that her husbandexperienced heart problems inthe last few years that haddeveloped from Lyme disease.

"He loved music and heloved sports - anything withkids - the kids and music. Ihave never heard him say hedidn't like someone. That's justthe way he was. I was lucky Ifound someone like that."

James A. Duarte wasborn on Nantucket to James L.Duarte, a Cape Verdean, andMinnie (Correia) Duarte, anisland native. His talent blos-somed in his youth, and Mr.Duarte began playing the guitarand singing at age 14. Anaccomplished songwriter andversatile musician who mas-tered styles from blues to rockand jazz, he shared his creativi-ty freely with many teens want-ing to hone their abilities andbegin their own bands.(Reprinted from the NantucketIndependant News Obituaries).

phapha

PHA Remembers Those Who Fought a Valiant Fight

Gay ButlerMidlothian, Texas

Karen J. RoseDallas, Texas

Jimmy DuarteNantucket, Mass.



Blood Donation Can Save Lives...Or Destroy Them.

Lyme Disease is the fastest growing infectious disease in theUnited States. There is no test currently available to prove

that Lyme Disease has been eradicated from one’s blood supply.

The Red Cross does not screen the blood supply for Lyme Disease.

A general rule of thumb if you haveever had Lyme Disease:

Never donate blood orblood products again.

Never donate your organs.

IN THE NEWS


ublic health alert · course in forest lake, minnesota, proving her little idea was worth all the...

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