when a delusion is not a delusion: re-examining delusions of parasitosis

Vol. 4, Issue 12 Investigating Lyme Disease & Chronic Illnesses in the USA December 2009

In This Issue

Linnette R.Mullin

MaintainingMarriage...

p. 4

Tina J.Garcia

Choices Pavingthe Way for

Physicians andPatients- Pt 2

p. 3

GingerSavely, DNPRe-examining“Delusions of

Parasitosis”150p. 1

Dr. MarthaGrout

AttentionDeficit Disorder

p. 2

LauraZeller

Insights intoLyme

Treatmentp.5

BarbaraLoe Fisher

NVICLaunches

Research Fundp. 3

Meeting the Challenge ofChronic Illness

Introducing a new PatientAdvocacy Group

p. 12

Lisa CopenCommunication

with YourSpouse aboutChronic Pain

p. 4

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

Clarifying the Goals ofthe NEI and the

Inclusion of LymeDisease

p.14

PUBLIC HEALTH ALERTFREE

Waking Up the Nation,One Reader at a Time...

Download Dr. Burrascano’s Lyme Protocol FREE at:www.PublicHealthAlert.org

When a Delusion Is NOT a Delusion:Re-examining "Delusions of Parasitosis"

by Ginger Savely, DNP andCindy Casey, RN

A Never-Before-Seen SkinCondition

"Oh my gosh…. thatlooks so creepy!" "What couldpossibly cause that?" "Haveyou seen a dermatologist?""What are you going to do?"With concern and bewilder-ment in their voices, a group ofnurses gathered around thenurse's station and examinedtheir co-worker's arms. Theywere intrigued yet somewhatfrightened by the unusual skincondition that was causing theirfriend's skin to erupt and pro-duce brightly colored fibers. A 60x-powered, hand-held,lighted magnifier enabled thenurses to visualize the unusualfilaments that were intertwinedin masses beneath their friend'sepidermis. One of the nursesmotioned for the doctor on callto come and take a look. Itwas not unusual at this teach-ing hospital for staff to gatherto assess a patient with anunusual condition, learn abouta new monitoring device, orbrainstorm about a problematicwound. But what was unusualthis time was that the patientwas one of their own, arespected and experiencedmember of their team.

No Help From theDermatologists

Cindy Casey, RN hadworked as a staff nurse andcharge nurse in this MedicalSpecialty Intensive Care Unitfor over 15 years. She hadalready seen four dermatolo-gists for her peculiar symptomsand none of them were evenwilling to look at the filamentsshe described. She was hastilydismissed as delusional or self-mutilating and was offered nomore than antipsychotics.Despite her disfiguring lesionsand debilitating symptoms,Cindy was released to continueworking in her job as staffnurse/relief charge nurse in a21-bed critical care unit.The lesions continued to appearspontaneously and the symp-toms intensified. The itchingand crawling sensationsbecame unbearable and soonCindy's entire body was cov-ered with painful, open, ooz-ing, disfiguring lesions.Doxepin, various antihista-mines, and medications forneuropathies were all ineffec-tive in controlling the insatiable

itch and crawling sensations.Black specks and bizarre fila-ments in white, clear, black,red, and blue emerged fromunbroken skin and the edges ofthe open lesions turned black.Cindy's co-workers, friends,and family could see thesestrange exudates with their owneyes. They knew Cindy as acalm, competent, and well-adjusted woman and certainlynot delusional.

The 5th dermatologistCindy consulted took her seri-ously enough to conduct a thor-ough medical work-up includ-ing comprehensive blood work,a chest x ray, a series of stoolspecimens, and a referral to aneurologist to rule out neuropa-thy as a cause of the unusualsensations. Yet even this der-matologist had no interest inlooking carefully at the micro-scopic debris that was torturingCindy day and night. Cindycould only guess that the doc-tor's reluctance to examine herskin had something to do withnot wanting to encourage her"delusion". A skin biopsy wasperformed at Cindy's insistencebut the report described thefibers as textile contaminants.All test results were normaland again, there were noanswers.

When In Doubt, Diagnose aPsychiatric Condition?

Cindy continued work-ing and was very open abouther illness with her colleagues.Her nurse manager becameconcerned that Cindy's condi-tion might be contagious, put-ting the unit's immuno-compro-mised patients at risk.Furthermore, the open lesionsthat Cindy was unable toocclude would put her at riskfor hospital-acquired infec-tions. Cindy's nurse managerconsulted the infectious diseasespecialists in the unit foradvice. Initially, these special-ists seemed concerned but aftermaking a call to Cindy's der-matologist, they too suspectedher problems were neuro-psy-chiatric in origin.

The dermatologist andhis residents had alluded to apossible psychological originof Cindy's illness but had nevercome out and said anythingdefinitive. When Cindy's hus-band Charles asked directly fora diagnosis, the residentsbecame uneasy and evasive.Charles asked again and wastold: "It is known as differentthings in different countries".

Charles replied with"Okay….then let’s start withwhat it is referred to in theUnited States". In a meekvoice and without making eyecontact, one of the residentsreluctantly replied "Delusionsof Parasitosis."

Delusions of Parasitosis

Delusions of Parasitosis(DOP), also known asDelusional Parasitosis orEckbom's Syndrome, is a psy-chiatric disorder in whichpatients mistakenly believethey are infested with parasites.In medical school, physicianslearn of the "matchbox sign" ofDOP, so named because in ear-lier times patients would pres-ent the debris from their lesionsin a matchbox. DOP is actuallyvery rare and oddly those diag-nosed with it have no prior his-tory of mental illness. In factpatients seem cognitively intactin every way while insistentthat there is something insideof them causing itching andother disturbing sensations.Some of the earliest patientswith these symptoms expressedbelief that their symptoms weredue to a parasite. However,because a known parasite couldnot be identified on superficialexam, doctors assumed that thepatients were imagining things.A recent explosion in the num-ber of patients with this unusu-al dermatopathology has givenrise to a virtual epidemic of

delusions of parasitosis. Thesudden prevalence of DOPraises suspicion that theseunfortunate people may actual-ly have had a real, unrecog-nized disease all along.

In Search of Answers

Cindy and Charles werestunned by the DOP diagnosis.Cindy had never mentionedparasites nor did she have abelief that parasites were thecause of her problems. Shehad no personal or family his-tory of mental disorders and infact she was a newlywed andthe happiest she had been inher life. If the doctors believedshe had a psychiatric problem,why had they not referred herto a psychiatrist? Charlesasked the dermatologist fortreatment recommendations.His reply was: "There is noth-ing we can do for the conditionof her skin. We can only offermedications that may help herto perceive her skin different-ly." Unfortunately, the medica-tions prescribed caused inca-pacitating sedation and the hor-rifying symptoms remainedunchanged.

Refusing to accept theDOP diagnosis, Cindy andCharles continued to search foran explanation for Cindy'sfrightening and debilitatingsymptoms. Charles created awebsite and began to maintaina blog detailing the trials and

“Delusions” ... Cont’d pg 6

The above photo shows a magnified image of the fibers that have beenretrieved from Morgellons patients. The inset shows the dermatological irri-

tation many patients have.

Public HealthAlert

The PHA is committed toresearching and investigating LymeDisease and other chronic illnessesin the United States. We have joinedour forces with local and nationwidesupport group leaders. These groupsinclude the chronic illnesses ofMultiple Sclerosis, Lou Gehrig’sDisease (ALS), Lupus, ChronicFatigue, Fibromyalgia, HeartDisease, Cancer and various otherillnesses of unknown origins.

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

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Assistant Editor: Susan WilliamsAdvertising Manager: Laura Zeller

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PJ Langhoff, Dr. Robert Bransfield,Tami Duncan, Harriet Bishop,

Lisa Copen, Joan Vetter.

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FEATURE

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Giving Lymethe Boot!

Texas Lyme Disease Association

by Dr. Martha Grout

The AmericanPsychiatric Association gaveofficial recognition to attentiondeficit disorder (ADD) in 1980.The drug Ritalin became widelyprescribed to calm the children.Then in 1997 with the epidemicstanding somewhere around500,000 to 700,000 nationwide,the American PsychiatricAssociation rewrote the diag-nostic criteria by adding theterm "hyperactivity" to theattention deficit attention deficitdisorder. ADD becameAD/HD.1 Mostly.

ADD differs fromADHD because there is anabsence of hyperactivity. Thesechildren are withdrawn, theydisplay what some mightdescribe as the "lights on, butnobody home" type behavior.Usually, people say ADHDwhen talking about attentiondeficit disorders.

Three types of ADHDare diagnosed:2

* 80 % = combined inattentive,hyperactive, and impulsive * 10%-15% = predominantlyinattentive * 5% = predominantly hyperac-tive and impulsive

It is estimated that 7%3

of children aged 4 to 17 areaffected with ADHD. TheCenters for Disease Controlestimated in 2004 that therewere 4 million cases nationwidein children 17 and under. Thatis about 1 out of every 10 chil-dren in public schools.4

There is no physiologi-cal process of degeneration ordisease that characterizes thedisorder. The diagnosis ofADHD is most often made aftera doctor or psychiatrist observesbehavior and deems the patienthas ADHD.

ADHD is characterizedby the "inability to marshal andsustain attention, modulateactivity level, and moderateimpulsive actions."5 This resultsin behavior which is markedlyinappropriate to the child's age,and often gets them in serious

trouble in school. These chil-dren are typically impulsive,often aggressive. They cannotseem to control their level ofactivity, and they spend threetimes as long as other childrendoing their homework. Even atthat, they usually require thepresence of a parent or othercaregiver to enable them to fin-ish their homework at all.The diagnosis and treatment ofADHD has generated contro-versy. The DSM-IV (theAmerican PsychiatricAssociation's Diagnostic andStatistical Manual of MentalDisorders), lists 14 symptoms;the diagnosis of ADHD can bemade if a child is found tohave 8 of them:

1. often fidgets or squirms 2. has trouble staying in one's seat 3. is easily distracted 4. cannot wait one's turn 5. blurts out answers 6. has trouble following instructions 7. cannot sustain attention 8. shifts from one activity to another 9. does not play quietly 10. talks excessively 11. interrupts 12. cannot listen 13. loses things 14. does dangerous things

If you're thinkingthat sounds like you as achild and some adults youknow today, you're notalone.

Stimulant Drugs

Drug therapy is the mostcommon form of allopathicmedical treatment for ADHD.Ritalin, Concerta or Adderallare the most popularly pre-scribed drugs. Focalin, anothermethylphenidate drug, is thelatest. There is little doubt thatstimulants help to controlbehavior in many cases. Thereis much doubt whether they infact improve scholastic per-formance.6 And concerns aboutthe drugs' side effects aremounting. Prescription drugsfor ADHD are almost all stimu-lants and come with "blackbox" warnings, meaning theycarry significant risk of seriousor even life-threatening adverseeffects. These drugs have beenlinked to cardiovascular prob-lems and sudden death. Themore common side effects canbe so devastating or unpleasantthat many kids just don't wantto take them.

Long term, drug therapymay turn out to have been avery costly short term fix.

There is evidence that the useof stimulants increase the riskof substance abuse in later lifeby over 50%.7 There is substan-tial evidence that stimulantdrugs increase the risk of hyper-tension, stroke and cardiovascu-lar disease.8 Many parents, andeven some researchers, arequestioning whether the use ofstimulant drugs in warranted,given that other therapies aremore effective in the long run.9

In April 2009, USA Today edi-torialized that we need moreeducation, less drugs.10 Thepaper reported that according tothe government's leading, multi-year study of 579 children11, the

effectiveness of the populardrugs for ADHD can dissipateafter 14 months of use. By thesix- and eight-year mark, across30 measures of behavior andacademics, children still givenmedication fared no better thantheir non-medicated counter-parts, despite a 41% increase inthe average total daily dose,failing to support continuedmedication treatment as salu-tary. The drugs can stuntgrowth. After three years, med-icated children have grown anaverage .79 inches less thannon-medicated ADHD kids.They also suffer from moremuscle tics. The editors wrote:"Response to what the studyitself calls its "failure to findbetter outcomes associated withcontinued medication treat-ment" has been troubling.Psychiatrists who've publiclyfavored drug over non-drugtherapy have downplayed thefindings. And the website ofChildren and Adults withAttention Deficit/HyperactivityDisorder, a leading ADHD

advocacy and support group,buried mention of the study in ablog without noting any find-ings. Perhaps not coincidentally,30% of CHADD's revenue isfrom drug companies. Suchdenial risks real harm. It's timefor those with ADHD childrenin their care to recalibrate theirenthusiasm for long-term use ofthe drugs and to engage in somebehavioral modification of theirown."

School officials are pro-hibited from implying that med-ication is a requirement forschool attendance but teachers,more than parents or doctors,refer children for an ADHD

diagnosis. Drugs are theusual consequence. Yet mostteachers surveyed are igno-rant about many of thedrugs' basic aspects, says aUniversity of Wisconsin-Eau Claire study.12

California neurologist Dr.Fred Baughman, author ofThe ADHD Fraud, HowPsychiatry Makes "Patients"Out of Normal Children,spearheads the argumentsagainst the explodingAD/HD diagnosis andincreased drug treatment:"The single, biggest heathcare fraud in US history-therepresentation of attentiondeficit hyperactivity disor-der (AD/HD) to be an actualdisease, and the drugging ofmillions of entirely normalAmerican children, as"treatment," is spreadinglike a plague-still. Oncechildren are labeled with

AD/HD, they are no longertreated as normal. Oncemethylphenidate hydrochloride,or any psychiatric drug, coursesthrough their brain and body,they are, for the first time,physically, neurologically, andbiologically abnormal."13

Some psychiatrists,including Peter Breggin, worryabout the drug therapies too:"...we abuse our children withdrugs rather than making theeffort to find better ways tomeet their needs. In the end, weare giving out children a verybad lesson-that drugs are theanswer to emotional problems.We are encouraging a genera-tion of youngsters to grow uprelying on psychiatric drugsrather than on themselves andother human resources."14

We need only look around us atthe children today to see thatsomething is clearly amiss.The U.S. government admitsthat 1 in 6 children is borntoday with some kind of brainimpairment.15 By age 3, an “Attention Deficit” cont’d pg 7

Attention Deficit Disorder

"In some cases,ADHD can be

vanquished by eatingfoods that build

strong bodies andlearning how to

eliminate those foodsto which a child isallergic. I call thatthe power of the

refrigerator. You'lllove the control it

gives you."

FEATURE


NVIC Launches Research Fund To Study Health & Vaccination

by Barbara Loe Fisher

“Show Us the Science andGive Us the Choice” was therallying cry of the 700 parentsand health care workers whotraveled from 44 states and 11nations to attend the ground-breaking Fourth InternationalPublic Conference onVaccination sponsored by theNational Vaccine InformationCenter Oct. 2-4, 2009. The his-toric conference featured pre-sentations by more than 40world experts in the areas ofvaccine science, policy, law,and ethics and raised more than$100,000 to launch an interna-tional fund raising campaignfor scientific research to inves-tigate health differencesbetween vaccinated and unvac-

cinated children and identifythose at risk for suffering vac-cine injury.

Families with healthychildren and those with vaccineinjured children joined handswith nurses, doctors and alliedhealth care workers in a unitedcall for quality scientificresearch and the human right tomake informed, voluntary vac-cination decisions. What wewitnessed was a celebration ofthe human spirit and what weaffirmed was dedication to truthin science and the duty to pro-tect the biological integrity ofour children.

We are not going to waitany longer for government orindustry to answer the big ques-tion of whether the nearly 70doses of 16 vaccines that doc-tors now give our childrenbetween the day of birth andage 18 is contributing to theunexplained chronic diseaseand disability epidemic that isharming far too many of ourchildren. With 1 child in 6 nowlearning disabled; 1 in 9 asth-matic; 1 in 100 developingautism; 1 in 450 diabetic andmillions more suffering withseizures, rheumatoid arthritis,Crohn’s disease, bi-polar disor-der and other chronic illness,the National VaccineInformation Center is assem-

bling a group of independentexperts from multiple scientificdisciplines to immediately eval-uate and act to protect our chil-dren’s health.

NVIC’s Children’s Fundfor Hope, Health and Healingwill raise funds to first createdata collection systems andconduct small preliminary stud-ies with a longer term goal ofconducting a large 10-year clin-ical study. The scientificresearch program will evaluatehealth outcomes of vaccinatedand unvaccinated individuals;identify potential high risk fac-tors for adverse responses tovaccination; and investigate thebiological mechanisms for vac-cine injury and death.

Vicky Debold, PhD,RN, who teaches healthresearch methods at GeorgeMason University and hasserved as NVIC’s Director ofPatient Safety for three years,has been appointed ScientificResearch Director for NVIC’sChildren’s Fund for Hope,Health & Healing. She isassembling a steering commit-tee of health research expertsand has pledged “to leave nostone unturned in our efforts tounderstand why so manyhealthy infants and children areregressing after vaccination andbecoming chronically ill.”

NVIC will also raisefunds to strengthen informedconsent protections in US vac-cine laws and support healthcare workers seeking to protecttheir right to make informed,voluntary vaccination decisions.Dawn Richardson, co-founderand president of PROVE, hasbeen appointed as NVIC’sDirector of State Advocacy.Mrs. Richardson led a seven-year successful grassroots cam-paign to obtain conscientiousbelief exemption to vaccinationin Texas in 2003. She said“There is too much abuse ofexecutive power taking place atthe state level when it comes tomandatory vaccination.”

If you want to supportunbiased, scientific researchinto the health effects of vacci-nation and be part of this his-toric grassroots movement todefend truth in science and theinformed consent principle,become a donor supporter ofthe consumer-led non-profit(501c3) National VaccineInformation Center. Theworld’s largest and oldest vac-cine safety and informed con-sent organization is funded bydonations from individual citi-zens and foundations, includingDr. Joseph Mercola and theAlbert and Claire DwoskinFamily Foundation. NVIC takes

no pharmaceutical industry orgovernment funding.

You can direct your taxdeductible donation to scientificresearch or informed consentadvocacy – or both. It’s yourchoice.

Go to www.NVIC.org tolearn more about NVIC’sunmatched 28 year record ofpublic service to prevent vac-cine injuries and deaths andalso learn how to make aninformed decision about H1N1swine flu vaccination. It’s yourfamily, your health and yourchoice.

A heartfelt thank you toall the parents, grandparents,nurses, doctors, scientists andhealth care workers who cameand made history with us at theFourth International PublicConference on Vaccination.You are writing a new chapterin the three decade vaccinesafety and informed consentmovement.

Together, we CAN standup and protect our human rightto make informed, voluntaryvaccine decisions based ongood science. Because thefuture is ours to change for thebetter if we have the courageand believe we can do it.

phapha

Healthcare Choices: Paving the Way for Physicians & Patients

Part 2: An Interview with Sandy Yozipovicby Tina J. Garcia

Tina: I was under theimpression that it was eitherchemo and radiation or naturaltherapies. I understand nowthat some natural practitionersacknowledge that chemothera-py is sometimes necessary.

Sandy: We're notagainst chemotherapy or radia-tion. It's just that if you'regoing to put that substance intoyour body, you better havesomething to counteract it thatreally builds up the immunesystem. So, we only believe inchemotherapy when it's neces-sary in certain types of cancers.What Envita's belief is, andwhat my belief is, is that everybody is different. Every body'sneeds are unique with each dis-ease you have.

Envita wants to give thecells of the body what theyneed in order to function. So,treatment should not be a stan-dard protocol. It should befrom the standpoint of, "Howare you doing? Let's see whereyou're at and what we can do togive you the right protocol, tai-lor made to the cause of yourdisease, not the symptoms."

Envita is not into treat-ing symptoms; they're intotreating the cause. Why do youhave that headache in the firstplace? Where did that comefrom? So, you've had aheadache for ten years? Why?This is in contrast to the tradi-tional way of medicating you."Here, try this new migrainemedication." Will the medica-tion get rid of the cause? Idon't think so.

Envita has a low-dose,natural form of chemotherapythat they administer. They get

down to the cause. They part-ner with doctors who are like-minded, because health careshould be about treating andhealing the sick. It shouldn't beabout just getting by andadding more chemicals in thepatient's body. It should beabout finding the cause, so theywork with microbiologists likeDr. Stephen Fry.

Tina: Healing the sickgoes way beyond putting bandaids on the problem, doesn't it?

Sandy: That's right, butyou understand that the phar-maceutical companies have amonopoly, and the doctors can'teven keep up. The liabilityinsurance is so great.Medicine is a completely differ-ent industry than it was fiftyyears ago. How many doctorsdo you know today who makehouse calls? That's the thingthat I learned through whatbecame my worst nightmare inbattling cancer. My experienceopened the door to advocacyfor people's rights.

To prove that there areother ways to treat disease,whether it's cancer or Lyme dis-ease, you've got to get down tothe cause, and you've got to beable to get rid of those infec-tions in the body. You've got tobe able to keep your immunesystem burning at high octane,so you can thrive.

Tina: Can you explainmore about the legislation thatmandates treatment for cancer?

Sandy: Well, I didn'teven know that it existed untilthis happened with this youngboy. Then I found out it's inevery state. I'm from Canadaand I found out that the lawsare the same there, too. Theysay that you are a bad parent if

you refuse having your childundergo the standard protocolof chemo and/or radiation forthat particular cancer. That'swhat the doctor is prescribing,and if you refuse, then they sayyou are neglecting your child.That's not the case. Why can't Ichoose for my child some ofthe treatment, like maybe wedon't want to do the chemo andwe just want to do the radiationor something else instead?

You see, what happensis that insurance companieswon't cover this new advancedtreatment. That's where thecrime is. If parents had thechoice to do both and have itcovered, they would. Patientshave to make a life-altering orlife-saving decision based onwhat they can afford. That'sthe bottom line. You know, mycosts at Envita were a third ofmy costs at the Mayo. Isn't thatsomething?

Tina: Yes, that's incred-ible! By the way, are theretreatment guidelines for certaintypes of cancer that are writtenby oncologists similar to thetreatment guidelines for Lymedisease?

Sandy: Yes, so for stagethree-four colon cancer, theprotocol was six months of achemo-radiation sandwich,which is two months of chemo,six weeks of chemo and radia-tion and another two months ofchemo. I went to two cancercenters, and both of them saidthey copy what the Mayo does.That's the standard protocol. Iknow the Mayo was the onewho started it. They used to dotwelve months and then theysaw that people were surviving,so they tried nine months andthen six months.

And when I quit afterfour months, you would havethought that I just shot some-body, because they thought thatwith my type of cancer, I wascrazy to stop. The cancer I hadwas so aggressive that the doc-tors said there was a 99%chance that it would come backin the first two years. Theycouldn't believe that I wouldstop their standard protocol,because no one would do thatafter four months. Yet, I'vebeen completely cancer-freesince 2001!

I had gone in for ascope five months after my sur-gery. This was after I had fourmonths of the chemotherapyand five months of the Envitatreatment. I'll never forgetwhen I was done; the doctorasked me, "Who did your sur-gery?" I told him it was Dr.Jacque Heppell, a brilliant sur-geon I just love. And then thedoctor asked, "When was yoursurgery?" I said, "September11, 2001." This was only a fewmonths earlier.

He said he had neverseen anything like this. Thiswas when I knew there was abig difference. He said hecouldn't even tell where thecancer had spread to the intes-tinal wall, where they did theresection, where they had takenout fourteen inches of my colonand had to rebuild two-thirds ofmy rectum. I also had myovaries removed, and of fifteenlymph nodes, eight were can-cerous.

I'll never forget whenthe doctor told me the thirteen-inch scar on my abdomen washealed. It looks like it didn'teven happen. When I had mycolonoscopy done after that, my

colon was like that of a brandnew baby's - pink, shiny andclear. Even to this day, my sur-geon at the Mayo told me tokeep doing what I'm doing,because he is so amazed at myrecovery.

Tina: Is the MayoClinic open to working withEnvita?

Sandy: I attribute theMayo for the success of thesurgery, for I wouldn't be hereif they hadn't done the surgerythat day. That would havechanged a lot of the factors,because the cancer would havebeen everywhere. It took sevenmonths for my husband to gettheir oncologists and radiolo-gists to talk to Envita. The topradiologist, since retired,became a dear friend, and heknew what I was doing.However, they can't recom-mend it, because it's not in theirprotocol. That's what's sad.

Tina: Are the doors andwindows opening to such inte-grative treatments?

Sandy: I'm going tomake sure they do. That's whatmy role is. Somebody's got tospeak up. Somebody's got tolet these people know that thereare other options. I don't thinkyou should have to pay out ofpocket for them, especiallywhen it could save your lifeand prevent you from being ahindrance on the healthcaresystem twenty years from now.We need to teach preventivemedicine and educate the pub-lic on what their options reallyare.

I really think that this isthe healthcare of the future, andit lies in the new CelebrationCentre for Integrated Healing

“Choices” ...cont’d pg 13


FAITH FACTOR

Communicating with Your Spouse About Your Chronic Pain

by Lisa Copen

"It's as if there arethumb tacks I our bed," Ilament to my husband as hecrawls in on the other side ofour bed. "Logically I knownothing is there, but my bodywould argue otherwise."

"I'm sorry," he offerswith a sympathetic voice, butthere is little else he can do.

"I feel a little nauseoustonight too," I respond. "I won-der if I should eat some crack-ers or something. . . or if thatwould just upset my stomachmore. It has to be the medica-tions. It will probably passsoon." Before I can finish mysentence he is already asleep.

For many of us, wehave a deep friendship with ourspouse. If we share a good rela-tionship we want to share ourdeepest thoughts that are run-ning through our brain. Andeven if our relationship isn't asgood as it once was, we mayfeel that by explaining a bitabout the pain that we are expe-riencing, our spouse may actu-ally understand our moodinessbetter and be a bit more loving.

Although we don't wantto burden them by constantlysharing about our aches andpains, when we are hurtingthere is a desire to be heard andhave our feelings validated. Bytalking out loud about what weare feeling, it somehow makesthe pain real. It's no longer "all

in our head.""Carry each others bur-

dens, and in this way you willfulfill the law of Christ," saysGalatians 6:2. But at somepoint we need to carry theseburdens to the Lord, and even aclose friend, rather than just ourspouse.

Although your spousemay not be suffering from aphysical ailment, there are stillmany losses that he is grieving.For example, it is an emotionalthing to watch someone youlove be in pain and not be ableto fix it. He may be suffering ashe watches you lose the abilityto do things you love. He likelymisses the couple out-ings you once tooktogether when youcould do physicallyactive events, whetherit was skiing, or justtaking long walkstogether on the beach.He may be frustratedthat even his hugs cancause you to wince.Counselors have foundthat there are threemajor areas wheremarriages suffer:money, time and phys-ical intimacy.

Your marriagemay be having diffi-culties in all three,specifically because ofthe role chronic illnesshas taken on withinyour marriage. Is itpossible to "share ourburdens" with our spouse with-out overburdening him andmaking him want to run theother way every time we openour mouth to share anothersymptom of our ailments?

Consider your spouse yourpartner and the illness thethird party

It's easy to think of youand your illness "up against"your spouse, but the illnessshould be the third party, not

your spouse. Although you willoften feel that your spouse ismerely a spectator to the painyou are in, he is feeling his ownkind of pain due to your illness.Make him a part of fighting thisbattle to have the life you wantto have in a way that he is com-fortable with.

It is okay (and wise) togently educate your spouse onyour illness. Allow him to cometo your doctor's appointments ifhe wishes, and ask his ownquestions about your illness,especially when you are firstdiagnosed. Don't overwhelmhim, expecting him to read allthe books you are reading,

especially if he never reads.Instead, give him a brochurewith the basics or see if there isa podcast he can listen to. Talkopenly about how some of theresponsibilities or roles maychange within your marriagedue to the illness. Be openabout what you think you canand cannot do, for example,maybe you can no longer scrubthat tub. Be forthright aboutthem so you can decide as ateam how they can still be com-pleted.

Connie Kennemer liveswith multiple sclerosis and sheshares, "I am not as mobile as Iused to be and often ask moreof my husband. I may ask him'Can you work at home thisafternoon?' Or I have asked,'Why do you have to go toanother meeting?' How muchshould he accommodate mebecause my body is changing?He doesn't always know whento stop and encourage me to trythings myself. This is a con-stant challenge."

Be reasonable in your expec-tations

It is quite com-mon that we end upmarrying someone whohas the opposite per-sonality style as we do.You may want to talkabout your illness agreat deal and readbooks of informationon it. You may sign upfor all the supportgroup meetings to havea chance to talk about itand make new friendsthat you have your ill-ness in common with.If your spouse doesn'tread the books or wantto accompany you toyour meetings, remem-ber that it is notbecause he doesn't care,but likely because he isdealing with the diag-nosis in his own way

within his own personalitystyle.

On the other hand,maybe you take things as theycome and don't want to get onthe internet and read everydetail about the symptoms youmay have. Your spouse maywonder why you aren't moreinterested in finding out how tobest treat (and even cure) thisdisease. He may go as far as toaccuse you of being in denialabout your illness. He maywant to see you be more pas-

sionate about being healed thanyou are. A wonderful book thatwill help you smooth out someof your communication is "Menare Like Waffles, Women areLike Spaghetti" by Bill andPam Farrell.

Have information about yourillness readily available

Sometimes we can justtalk in circles about our painand illness, never really gettingto anything specific or a topicthat can help our marriagegrow. Perhaps one of the mosteffective tools to share some-thing is to place sticky notes onpages of a books you'd like himto review with comments abouttopics you'd like to discuss. Youcan hand it to him and say,"There is a great example inthis book about what we areexperiencing right now. Wouldyou be willing to read it andthen maybe we can talk about itlater?" Shares Connie, "Afterten years of living with MS, Iam past the whiney stage, butRex sometimes holds back;that's when I need to ask himmore questions about his feel-ings."

Find ways to share aboutembarrassing parts of the ill-ness

There are some parts ofillness that are just downrightembarrassing. For example, ifyou attend an event with yourspouse, you may end up in thebathroom for eighty percent ofthe show. You need to let yourspouse know this is part of thedisease. But if you don't wantto talk about all those detailsit's okay. He probably doesn'treally want to hear about themeither. Most health organiza-tions have brochures that listthe symptoms of the disease.You can hand him one of theseand say something like, "I'mtrying to cope with some of themore personal matters of this

“Communicating” ... pg 9

Although your spouse maynot be suffering from a

physical ailment, there arestill many losses that he isgrieving. For example, it is

an emotional thing towatch someone you lovebe in pain and not be able

to fix it. He may be suffering as he watches

you lose the ability to dothings you love.

Maintaining Marriage through a Correct Life Focusby Linnette R. Mullin

"'Marriage is an adven-ture, like going to war,' saysG.K. Chesterton. Is this howyou feel - that marriage is aseries of battles, one afteranother? I believe all couplesdealing with chronic illnessstruggle daily just to surviveand wonder if life will ever getbetter. Others don't fare quite aswell and their marriage comesto a tragic end. Despite the con-stant upheaval we Lymies andour spouses face, I believe ourmarriages can do much morethan simply survive. I believethey can thrive." (PHA October,by LRM)

I last shared in anoverview some vital things forrescuing and strengthening yourmarriage. Let's begin to delveinto the first main point,"Between you and God."

1. Correct life focus -an intimate relationship withChrist is vital. Without it, thereis no guarantee of success.

The first step to build-ing a strong marriage is not

spouse-examination, but self-examination. Where am I in mywalk with Christ? Is He essen-tial to my life or just someone Iuse to fall back on when lifegets ugly?

As C. S. Lewis said, "Ibelieve in Christianity as Ibelieve that the sun has risen:not only because I see it, butbecause by it I see everythingelse." Christ is the focal pointof our existence. Our relation-ship with Him matters not justwhen we're feeling good andenjoying sweet communionwith Him, but also when welack fervor for Him. It matterswhen we're sick and hurting,and when He seems far away.Our relationship with Jesusmatters when confusion swirlsin our heads and we feel offbalance. It matters when wethink it doesn't matter.

Years ago, I sharedfavorite scripture passages withmy dad. He asked if I had everread John 15 about the vine andthe branches. "It's an interestingchapter. You should take a lookat it." I couldn't wait to do justthat, and when I did, my lifechanged forever. I still had the

same family, the same prob-lems, and the same life issues,but my entire outlook on myrelationship with Christchanged forever.

The transformation wasslow. As God called me back tothis passage time and timeagain, I grew closer to Himthan the time before. I realizedI couldn't live without the truthof these verses. I needed thisvital relationship with Jesus.My entire existence hung onHis words:

"Abide in Me, and I inyou. As the branch cannot bearfruit by itself, unless it abidesin the vine, neither can you,unless you abide in Me. I amthe vine; you are the branches.Whoever abides in Me and I inhim, he it is that bears muchfruit, for apart from Me you cando nothing." John 15:4-5 (ESV)

I absorbed these verses,allowing them to become a partof my spiritual DNA. This kindof fellowship anchors me inevery storm. When life threat-ens to capsize me, Jesus holdsme fast. When my sails tear andthe mast tumbles down aroundme, He rescues and mends my

broken ship. Abiding in Christdoes not shield me from life'streacheries; rather He carriesme through this storm-tossedlife, strengthening me for thejourney.

2. Trust God complete-ly - don't put your faith in yourfaith, but in God Himself. Don'tlimit God. He's so much biggerthan we can ever hope to real-ize while in this life.

Blessed to be convertedat a young age, I sometimeswondered what faith in Christshould look like in my life. It'seasy to get caught up in theidea that "faith" is what gets methrough when said faith is noth-ing more than believing inbelieving. It is not trusting inmy belief that saves or keepsme, it is trusting in the Onewho has the power to save andkeep me. Christ is the object ofmy faith, not my faith itself.We tend to put God in our ownman-made box. We form ideasof what we think God is likeand squish Him into that box.Thankfully, He's too big to fitand pops right back out, show-ing us who He really is. He

moves impossible mountainseveryday for people every-where. Unfortunately, limitingHim in our minds often rendersus unable to see the wondersHe displays before our eyes.

I don't always under-stand the things I go through inlife, but I'm learning to trustthat God knows what is best forme. To illustrate this, I'll sharesong lyrics I wrote during adesperate time in my life:

More Than I DeserveSometimes I cannot see

Your will, or hear Your voice,say, "Peace, be still."

Oh dear Jesus, pleaseguide me, hold me safely toYour side.

I do not always under-stand all the things that lifedemands.

Help me trust You andserve You whatever comes myway.

Oh, if I wrote a thou-sand songs to worship You andYou alone,

I could not begin tocome to the end of ways to singYour praise.

“Marriage”...cont’d pg 7


FEATURE

Insights into Lyme Disease Treatment:Interview with Author Connie Strasheim

by Laura Zeller

A powerful new Lymedisease resource is now avail-able! Health care journalistConnie Strasheim has just comeout with her latest book,Insights Into Lyme DiseaseTreatment:Thirteen Lyme-Literate Health CarePractitioners Share TheirHealing Strategies. It is anextraordinary accomplishment,and an amazing resource thatwill no doubt help save manylives. It explains in precisedetail the Lyme disease treat-ment protocols used by thirteenof the world's most recognizedLyme disease specialists. I wishthat a resource like this wouldhave been available twentyyears ago! Connie has compileda tremendous amount of infor-mation and summarized it intoeasy to understand chapters.

The Lyme disease spe-cialists featured in her bookoffer a wide variety of treat-ment options to choose from,including antibiotic therapies,herbal protocols, homeopathicremedies, energy medicinemodalities and much more.Most importantly, Connie askseach of the professionals theiropinion about who gets better,and who does not, and why.The insight and answers givenin her book are bound to bringon a feeling of empowerment.After reading "Insights intoLyme Disease Treatment," youwill undoubtedly be armed withthe information that you needto help get yourself well. I amvery grateful that Connieagreed to share even more valu-able information with me in thefollowing interview.

Can you discuss in summarywhat your new book"Insights into Lyme Disease"is about?

This book discusses, ingeneral terms, the treatmentprotocol of thirteen "Lyme liter-ate" health care practitioners, aswell as insights into the healingprocess. Included in the bookare the following:

1) Anti-microbial treatments forLyme disease and associatedinfections, including antibiotics,herbs, homeopathic remedies,plant stem cells and biophotons

2) Informationon how to sup-port the body'ssystems, whichis an integralcomponent tohealing fromchronic Lymedisease.Particular atten-tion is given tothe immune,endocrine, neu-rological, diges-tive and muscu-loskeletal sys-tems

3) Treatmentsfor symptomaticrelief. Solutionsfor fatigue, pain,brain fog,depression, anx-iety and insom-nia are offered,as well as others

4) DetoxifyingLyme biotoxins,mold, Candida,heavy metalsand other environmental toxins

5) Treating food and environ-mental allergies

6) Lifestyle and dietary recom-mendations for faster healing

7) Strategies for healing emo-tional trauma

8) Patient and practitioner chal-lenges to healing

9) Factors that influence heal-ing

10) Suggestions for how familyand friends can help the sick

11) Which anti-microbial treat-ments work and which don't

12) How to discern whetherLyme disease is primary inpatients' overall symptom pic-ture.

How does your new bookcompare to your previousbook "The Lyme DiseaseSurvival Guide"?

While both books con-tain treatment information, two-

thirds of my first book focuseson the lifestyle and emotionalchallenges of living with achronic illness, and how tocope with those. It is based onmy own experience with Lyme,and as such, is somewhat auto-biographical. The second bookcontains the treatment protocolof thirteen health care practi-tioners, so my opinion is notreflected in this book, and itcontains more comprehensivetreatment information. Bothbooks have their own value, butmy personal style and "signa-ture" are definitely more promi-

nent in the first, so I think it isa book that touches the soulmore than the mind, while thesecond one provides valuabletreatment information from theprofessionals. My first bookwas fun, and therapeutic, towrite. The second one wasmore grueling, since I had tocollaborate with thirteen med-ical professionals, but theresearch process was interestingand an exercise in enlighten-ment for me.

Did the Lyme specialists inthe book welcome the oppor-tunity to discuss Lyme disease

treatment, orwere some ofthem reluctantto share specificinformation?

Yes, they didwelcome theopportunity toshare, becausethey are doctorswho truly want tosee people getwell, and somehave even beenpersonally affect-ed by Lyme.Hence, I believethey decided toparticipatebecause of theirpassion for treat-ing the disease.

How open werethe medical pro-fessionals fea-tured in thebook with dis-closing specifictreatment proto-cols, doses, test-

ing, alternative therapies, andadvice? Did they openly sharethe information, or were someof them guarded (out of fearof persecution of LLMD's)?

A few of the profession-als were a bit guarded, yes, andlogically, since LLMD's arebeing so heavily persecutedthese days. Putting a disclaimerin the front of the book, andfaithfully adhering to the infor-mation they provided meseemed to allay any concerns.They all had a chance to editand review their chapters

before I finally submitted themfor publication.

I noticed a general consensusamongst the physicians in thebook that antibiotics do notwork for everyone. Wouldyou agree with that?

Based on my experiencein speaking with other peoplewho have Lyme, I would agreethat this is true. Sometimes thishappens because antibiotic regi-mens are inappropriate and/orinadequate, or because support-ive therapies aren't undertaken.Some people have the idea thatantibiotics are all that you needto get better, but many withLyme also require aggressivedetoxification, immune andendocrine support, for example.Supportive therapies are vital.Also, I surmise that some peo-ple have antibiotic-resistantstrains of the infection, or prob-lems with their biochemistrywhich prohibit antibiotics frombeing fully effective. I tookantibiotics for only two monthsduring my Lyme disease andbecame extremely weak.Energy medicine and herbshave been more helpful for me,but these strategies don't workfor everyone. Antibiotics havethe longest track record ofeffectiveness, in any case.

It seems like the best LLMD'scombine the best of antibiotictherapy, with that of alterna-tive therapy. Would it seemlogical to you that what wetruly need are Integrativemedicine LLMD's?

Yes, because I thinkthere is value in both areas ofmedicine, and the practitionerswho have knowledge of bothtypes of medicine seem to havethe most success with theirpatients. Drugs aren't theanswer for all problems thathappen in the body when a per-son becomes chronically illwith Lyme. They may be mostuseful for ridding the body ofinfections but alternativemethodologies may be moreeffective for supporting andstrengthening the body. Andwhen used together for all ofthe aforementioned purposes,

“Insights” ...cont’d pg 9


MEDICAL PERSPECTIVES

tribulations of their quest.Cindy started granting inter-views for television and news-papers regarding her mysteriousillness. After her first appear-ance on TV, Cindy began hear-ing from patients all over theUnited States. It was then thatshe knew she had done theright thing by going public withher symptoms. At the sametime, she realized that her lifewould never be the same.

A Disease is Born

In 2002, a Pennsylvaniamother of 3 noticed unusualfiber-containing lesions on thebody of her 2 -year- old son.Unable to find a diagnosis forher son's condition, MaryLeitao coined the nameMorgellons disease (MD) forthe ailment after discovering acondition resembling her son'sin a 17th Century medical textby Sir Thomas Browne.Drawings representing the'harsh hairs' that were found inthe skin of children in Francebore some resemblance to thefibers she had pulled from herson's lesions. Ms. Leitao starteda not-for-profit organizationnamed The MorgellonsResearch Foundation (MRF)with the goal of garnering seri-ous attention for the disease.The organization's website,www.mrf.org, began to dissem-inate information and ask thosewith MD symptoms to comeforward and be counted. Thewebsite included a databasewhere patients could reporttheir symptoms. Currently thenumber of self-reported casesexceeds 14,000 and the tally israpidly rising (www.mrf.org,accessed 9/2/09).

The Symptoms of MorgellonsDisease

Dr. Savely recentlycompleted a descriptive studyof 122 patients who had a posi-tive in-office examination formicroscopic, subcutaneousfibers. In this sample group, thetop ten symptoms specific tothe patients' skin condition andexperienced by more than 70%of the sample were: crawlingsensations under the skin, spon-taneously-appearing, slow-heal-ing lesions; hyper-pigmentedscars when lesions heal; intenseitching; seed-like objects andblack specks coming out of thelesions; a sensation of some-thing trying to poke through theskin from the inside out; "fuzzballs" on intact skin; fine,thread-like fibers of varyingcolors in lesions and intactskin; and thick, tough, translu-cent fibers that are highlyresistant to extraction.

Morgellons and LymeDisease: Is There aConnection?

Most patients with MDalso suffer from severe chronicfatigue, decreased exercise tol-erance, self-described brain fog,cognitive decline, weakness,joint pain and muscle pain.However, according to Dr.Savely's recently completedstudy, these systemic symptomsmay be attributable to a surpris-ing infection that 97% of MDpatients share in common -Lyme disease, a bacterial infec-tion acquired through the bite

of a tick. Although no one knows

the reason for this perplexingassociation, one guess is thatwhatever pathogen causes MDmay be present in the tick gut.Ticks are filthy creatures,known to be cesspools of infec-tion. Tick borne disease expertsare becoming increasinglyaware that co-infections com-plicate the diagnosis and treat-ment of Lyme disease. Could itbe that a tick bite simultaneous-ly infects a victim with numer-ous pathogens, one of whichmay be the etiologic agent ofMD?

Lab Findings in MorgellonsDisease Patients

When com-mercial laboratoriesexamine wound biop-sies of MD patients,the fibers are usuallymislabeled as textilein origin. However,research scientistRandy Wymore, PhDat the Oklahoma StateUniversity Center forHealth Sciences,Center forInvestigation ofMorgellons disease(CIMD) in Tulsa, OKexamined these fibersin conjunction withthe Tulsa PoliceDepartment CrimeLab. After comparingthe fibers to 10,000known inorganic sub-stances in the FBIdatabase and 90,000organic compounds,the crime lab deter-mined that the fibersare not textile or anyknown environmentalcontaminant. Thusfar, CIMD has determined thatonly individuals claiming tohave MD have been observedto have these unknown fibers intheir skin. Wound cultures of Morgellonspatients have been unrevealing,growing only normal flora ofhuman skin. Lichen simplexchronicus has been noted whenlesions are biopsied. This find-ing is not surprising consider-ing patients' overwhelmingdrive to scratch and gouge atthe spontaneously appearinglesions in an attempt to removethe painful fibers. But standardcommercial laboratories arelooking for what is alreadyknown and present in theirdatabases. It will take morethan a commercial lab runningstandard tests to unlock themystery of Morgellons disease.

Research into MorgellonsDisease

Oklahoma StateUniversity's CIMD is the onlyknown private Morgellonsresearch facility with fundinglimited to contributions fromMD patients, their families, anddedicated grass roots organiza-tions. Their research has yet toreveal anything conclusiveregarding the etiology of thedisease, but they have ruled outmany substances that the MDfibers are not. The Centers forDisease Control and Prevention(CDC) initiated an investigationinto MD in January of 2008.Results are pending andpatients are growing discour-

aged, as publicized conclusionof the analysis is way past theproposed completion date. Sothe cause and cure for MDremains a mystery.

What About Transmission?

Patients and health careproviders often express concernabout the possibility of person-to- person transmission of MD.To date, experience has shownthat this is not an issue. Manypatients, including Cindy, havenot contaminated their partnersor other family members. Itappears that the agent of MDmust somehow enter the bodythrough open skin such asthrough a bite, cut, or splinter.

Therefore, much as is the casewith HIV, casual transmissionis an unlikely possibility.

The Internet's Role in a NewDisease

After examining over300 patients with Morgellonsdisease, we have continued tobe impressed with the consis-tency of the patient complaints.Patients come from all parts ofthe country and from all walksof life. Many have been ranch-ers or farmers, without accessto the Internet, thus debunkingthe often held notion that theincreasing incidence of DOP isnothing more than mass hyste-ria fueled by online chatgroups.

What the Internet hasdone for these frightenedpatients is help them know thatthey are not alone. Victims ofMorgellons disease from allover the world have been ableto communicate with oneanother and realize that theyshare identical symptoms.When Cindy and Charles heardof the disease and saw MaryLeitao's website, they had theirfirst glimmer of hope. At leastCindy was not alone and ifthere were others afflicted withher condition, surely helpwould follow. But finding aname for Cindy's condition andknowing that there were othersin her situation were only thefirst steps in what was tobecome a frustrating and weari-some journey. Extremely fewhealth care providers are will-

ing to even admit the disease isreal, much less try to help thepatients who are suffering fromit.

The Charles E. HolmanFoundation

Cindy worked her lastshift as a nurse in November2005. She misses her job andthe people she worked with for16 years. Cindy still struggleswith Morgellons symptomsdaily and her disfigured bodybears little resemblance to thevibrant, healthy nurse that sheonce was. She now lives onSocial Security DisabilityInsurance and has become apassionate advocate for

Morgellons patients all overthe world. In 2007 Cindystarted a foundation namedThe Charles E. HolmanFoundation in honor of thehusband she had just lost toan untimely death. Charleshad seen Cindy through hermost difficult times and shestill feels fortunate that shehad his support as well asthat of her family and friendswho took her symptoms seri-ously from the beginning.

Duties of the Diagnostician

The responsibility for apsychiatric diagnosis shouldnot rest in the hands of a der-matologist. The proper pro-cedure is to refer to a psychi-atrist but only after everyeffort has been made toexamine the patient carefullyand thoroughly to rule outphysiologic abnormalities.The distinguishing character-istic of Morgellons disease isthe presence of microscopicsubcutaneous fibers, whichcan be visualized by the

examiner with lighted magnifi-cation using diligence andpatience. The dermatologistmust at least make an effort tofind these fibers before initiat-ing a psychiatric referral.

The diagnosis of a delu-sional disorder is not one thatshould be made lightly. Oncepatients are diagnosed delusion-al, the label prejudices otherhealth care providers againstthem in a never-ending struggleto be taken seriously. A delu-sional diagnosis can lead toalienation of family and friendsand loss of employment.Furthermore, in some cases,children have been removedfrom the parent with purportedDOP. The despair caused bybeing disregarded leads to iso-lation and hopelessness and insome cases, suicide.

Eleanor Roosevelt said,"There is no more liberating, nomore exhilarating experiencethan to determine one's posi-tion, state it bravely and thenact boldly. Action creates itsown courage; and courage is ascontagious as fear." Whether ornot Morgellons disease provesto be a distinct entity, its vic-tims deserve to be taken seri-ously and treated with respect.Until valid research teaches usmore about this insidious dis-ease, anyone who comes incontact with these marginalizedpatients has the opportunity to"act boldly" by listening withan open mind, acting with anopen heart and validating thereality of this living nightmare.

phapha

References:

Boggilda, A., Nicksb,B. Yenc, L., VanVoorhsc,W.C., McMullend, R.,Bucknerc, F. S., Lilesce, W.C. (2009). Delusional para-sitosis: Six-year experiencewith 23 consecutive cases atan academic medical center.International Journal ofInfectious Diseases,doi:10.1016/j.ijid.2009.05.018

Cook, B.W. EleanorRoosevelt:1884-1933. Vol I.New York, NY: PenguinBooks; 1992:6.

Harvey, W.T. (2007).Morgellons disease. Journal ofthe American Academy ofDermatology, 56, 705-706.

Harvey, W.T.,Bransfield, R. C., Mercer, D.E., Wright, A. J., Ricchi, R. M.and Leitao, M.M. (2009).Morgellons disease, illuminat-ing an undefined illness: CaseReport. Journal of MedicalCase Reports, 3: 8243.

Kellett, C.E. (1935).Sir Thomas Browne and thedisease called the Morgellons.Annals of Medical History, 7,467-469.

Koblenzer, C.S.(2006b). The challenge ofMorgellons disease. Journal ofthe American Academy ofDermatology. 55, 920-922.

Koo, J. & Gambla, C.(1996). Delusions of parasito-sis and other forms of mono-symptomatic hypochondriacalpsychosis. General discussionand case illustrations.Dermatology Clinics, 14,429-438.

Koo, J. & Lee, C.S.(2001). Delusions of parasito-sis. A dermatologist's guide todiagnosis and treatment.American Journal of ClinicalDermatology, 2, 285-290.

Savely, V.R., Leitao,M.M., & Stricker, R.B. (2006).The mystery of Morgellons disease: Infection or delusion?American Journal of ClinicalDermatology. 7, 1-5.

Savely, V.R. &Stricker, R.B. (2007).Morgellons Disease: TheMystery Unfolds. Expert Reviews in Dermatology, 2(5),585 - 591.

Stricker RB, Lautin A,Burrascano JJ. (2005) Lymedisease: point/counterpoint.Expert Reviews of AntiInfective Therapy, 3, 155-65.

Wymore, R.S., Casey,R.L., Allen, R.W., Boese, M.,Pogue, R., & Burkeen, J.Physical evidence inMorgellons disease (2007).Presented at the 14thInternational MolecularMedicine Tri- Conference,San Francisco, CA, February27-March 2.

After examining over 300patients with Morgellonsdisease, we have contin-ued to be impressed with

the consistency of thepatient complaints.

Patients come from allparts of the country andfrom all walks of life.

Many have been ranchersor farmers, without access

to the Internet, thusdebunking the often heldnotion that the increasing

incidence of DOP is nothing more than masshysteria fueled by online

chat groups.

“Delusions” ...cont’d from pg 1

The Charles E. HolmanFoundation

http://www.thenmo.org/



increasing number of childrenexhibit autism and other formsof toxicity-related illness suchas asthma, diabetes, ADD, anddepression.

Getting to the Root Cause

Root causes of theADHD syndrome may be mul-tiple, including brain processingabnormalities, problems withthe entire listening/hearing sys-tem, food or environmentalallergies, metabolic insufficien-cies, or heavy metal toxicity,among other things.

We know many cases ofADHD behavior have beencleared up by making a fewextremely important changes indiet. Removing sugar hasstopped some children from"bouncing off the walls."Removing specific foods towhich they are sensitive hasbeen the answer for others.Sometimes fish oils correct afatty acid deficiency and restorenormalcy. A new Oxford studyof 117 underachieving childrenfound 40% of them made dra-matic improvements in readingand spelling when given fish oilsupplements high in omega-3fatty acids.13 Harvard andColumbia researchers recentlyrecommended that artificial food colorings are one reasonfor the surge in children'shyperactivity and attentionproblems. They asked, "Dochildren's foods really need tobe colored with petroleum-based dyes like Red 40 andYellow 5 when there are plentyof natural dyes available? Arefood manufacturer's profitsworth the tradeoff in our chil-dren's health?"17

In 2008, the AmericanAcademy of Pediatrics said theSouthampton/McCann Study ofSeptember 2007, finally con-vinced them to reverse theirlong-standing position on foodadditives:18

"Thus, the overall findings ofthe study are clear and requirethat even we skeptics, whohave long doubted parentalclaims of the effects of variousfoods on the behavior of theirchildren, admit we might havebeen wrong.

"In real life, practition-ers faced with hyperactivepreschoolers have a reasonableoption to offer parents. For thechild without a medical, emo-tional, or environmental etiolo-gy of AD/HD behaviors, a trialof a preservative-free, food col-oring-free diet is a reasonableintervention."

It's not always clearwhich came first - the process-ing problem or the metabolic

insufficiency. For example:Children raised on commercialbaby formulas (some are 50percent corn syrup), likely havebeen metabolically challengedsince their very beginning.They may have lost brain func-tion because they took in moremanganese than what is inbreast milk. Manganese occursat very low levels in breastmilk, but it is added to infantformula made from cow's milkand occurs naturally at evenhigher levels in soy formula. Itis dangerous for infants to con-sume more manganese thanthey would get from breastmilk because infants have nocapacity to excrete excessamounts until they are older.The effects of too much man-ganese include inattention,impulsivity, and hyperaggres-sion.19 Soy baby formulas donot contain nearly as much pro-tein as breast milk, deprivingthe developing brain of what itneeds. Researchers at BrownMedical School compared pre-mature infants fed with breastmilk to those fed formula andfound breast fed babies clearlydid better on tests of mentaldevelopment by age 18 months.The more breast milk they con-sumed, the better they did onthe tests. Ingredients in breastmilk, particularly fatty acids,seem to help the brain developproperly.20 Additionally, breastmilk builds a strong immunesystem.

Some children areimpacted by the high body bur-den of heavy metals whichinterfere with the normal devel-opmental processes. Take leadfor example: Children withhigher exposures to lead aremore easily distracted, lessorganized, and apt to be hyper-active, impulsive, aggressive,and easily frustrated. Soundfamiliar?

Governmental researchreports the average Americanbaby, at birth, has more than200 chemicals in its body.21

Even after 9 months of growthin the womb, the infant's nerv-ous, respiratory, reproductive,and immune systems are notyet fully developed. They are ina dynamic state of growth withcells multiplying and organ sys-tems developing at a rapid rate.Pound for pound, children takein more air, food, and liquidsthan do adults. For example,carpets are typically made withtoxic materials; children tend tomake direct contact with carpetwith their faces and hands asthey play.

Neurotoxin expertsPhillippe Grandjean and PhilipLadrigan reported in 2006 that

the widespread use of pesti-cides, cleaning products, gluesand other chemicals that con-taminate our air, water, andhomes are causing a "silentpandemic" of brain diseases inchildren. When children reachtheir "toxic overload" point,out-of-control behaviors can bethe result. Medical schools donot train physicians in detoxifi-cation procedures, nor doesmedical school curriculum yetembrace the mounting evidencethat environmental toxins causebreakdowns in body systemsthat cannot be corrected simplyby adding a prescription drug -yet another toxic substance.

The CincinnatiChildren's Hospital MedicalCenter study is the first toexamine how genes, toxins andgender interact to shape ADHD."Our analysis confirms a sus-pected link between prenataltobacco exposure and ADHD,and it demonstrates that thegreater the level of blood lead,the greater the risk of ADHD,says Bruce Lanphear, MD,director of the Children'sEnvironmental Health Center atCincinnati Children's and corre-sponding author of the study."These findings underscore theprofound behavioral healthimpact of these prevalent expo-sures and highlight the need tostrengthen public health effortsto reduce prenatal tobaccosmoke exposure and childhoodlead exposure." Investigatorsfound approximately 270,000cases of AD/HD attributable tomothers smoking during preg-nancy. Children exposed totobacco before birth had a 2.5-fold higher risk of ADHD com-pared to children not soexposed to tobacco. The studyis based on data gatheredbetween 1999 and 2002 from aparent or guardian of 4,704children.22

Food sensitivities andheavy metals create inflamma-tion in the GI tract. If we havean inflamed "gut," we are notable to efficiently process andabsorb the nutrients in the foodwe eat. As some wise persononce said: we are not what weeat, we are what we absorb.It is important to have a strongbody biochemistry and metabo-lism23, so that the brain process-ing can be corrected, and willhold fast even under stress.

Lyme Disease & ADHD

There is growing evi-dence that some children withADHD symptoms actually haveLyme disease. Lyme's effect onthe brain can appear as increas-ing anxiety, irritability, chronic

depression, cognitive declineand memory loss, and muchstronger ADHD tendencies.

Lyme Disease is called"The Great Imitator" since itcan affect the entire body in amyriad of ways. It is often mis-diagnosed as ADD, ADHD,rheumatoid arthritis, autism,depression, chronic fatigue,multiple sclerosis, and more.The co-infection bartonella hasbeen associated with neuropsy-chiatric disease.

Most experts agree thatthe incidence of pediatric neu-rological dysfunctions, includ-ing autism and ADHD, hasincreased at least four to fivetimes in the last decade. Thevast majority of promising evi-dence connects many of thesedysfunctions to the emerginginter-relationship of the neuro-logical and immune systems.

Non-Drug Approach

Comprehensive treat-ment for ADD and ADHDincludes brain processing, foodsensitivities, environmentalallergies, heavy metal and othertoxicities, metabolism, andfunction of the intestinal (GI)tract, so we can determine theorigin of the problems.

It is well known thatpeople with ADHD, depression,head injury, and other forms ofbrain dysfunction often have aslowing of the activity in thefrontal lobes - that area of thebrain in charge of executivefunction: planning ahead, deci-sion-making, remembering, lan-guage, and other important cog-nitive functions. Sometimes anADHD individual has beenrobbed of the ability to hearand process specific frequen-cies because of chronic earinfections, severe allergies orlots of very loud concerts. Theear becomes unresponsive andmust be stimulated in order tobe able to tune into the desiredsound. Attention, focus, learn-ing, and language abilities canall be improved by retrainingthe brain to listen using differ-ent frequency sounds, so thatwhatever is available is work-ing at maximum capacity. Thiskind of brain dysfunction canbe treated without drugs.

Hemoencephalography(HEG) uses light to measureactivity in the frontal lobes bymeasuring the oxygenation inthe blood. Oxygenation ofblood flowing to the frontallobe can be increased through acomputer-assisted biofeedbackmechanism. This can improveall the functions dependentupon frontal lobe activity. Thiscan bring order from chaos in

the brain of a child - or adult -with ADHD.

As oxygenation increas-es, neurons are able to makenew connections. HEG is com-bined with exercises for audito-ry processing and vestibularfunction, cognitive develop-ment, and brainwave entrain-ment in a successful programcalled BrainAdvantage™. It isunique program that encouragesneural connections all over thebrain and brainstem.

The pieces of the puzzlenecessitate a holistic approachwith emphasis on nutrition. Insome people, ADHD symptomscan be reversed by eliminatingsugar, wheat, corn, chemicaladditives from their diets.Parasitic infections are commonwith ADHD and good homeo-pathic remedies can correctthat. Sleep deprivation is anoth-er piece of the puzzle that canbe addressed through bothbehavioral and nutritionalmeans, sometimes with specificsupplements.

Some children haveturned around just by removingspecific foods to which they aresensitive and adding omega-3fish oils to correct a fatty aciddeficiency. Others get a bigboost with chelation to removemetals which are silently ware-housed in brain and bones andgum up the works.

By treating the originsof the dysfunction, and deter-mining if Lyme disease is a fac-tor, we can avoid the need fordangerous stimulant medica-tion. But most importantly, wegive parents a way to restoretheir child's health naturally andbring forth the person who gotlost when the body's functionsgot confused. phapha

“Attention Deficit Disorder” ...cont’d from pg 2

Martha Grout, MD, MD(H) isVice-President of the ArizonaBoard of Homeopathic andIntegrated MedicineExaminers. She has twodecades in emergency medi-cine and a decade in homeo-pathic medicine. HerScottsdale, AZ, clinic wasbuilt with environmentallyfriendly materials. She spe-cializes in reversing chronicillness.

The Arizona Center forAdvanced Medicine

9328 E. Raintree DriveScottsdale, Arizona 85260

Phone: 480-240-2600Fax: 480-240-2601

[email protected]

For You alone are wor-thy, O Lord, forever to bepraised and adored.

Help me love You andadore You and bring glory toYour name.

When I cannot see Yourwill or hear Your voice say,"Peace, be still."

Oh dear Jesus, comeand guide me; keep me safelyby Your side.

I cannot always under-stand all the things that lifedemands.

Help me trust in Youand serve You no matter whatcomes my way.

Chorus:Oh, how You love me,

Lord, so much more than Ideserve.

You died for me on acruel tree; from sin You've setme free.

Oh, how You love me,Lord, so much more than Ideserve.

Give me faith to see thatYou rescue me, that You alwaysmeet my needs.

Though verses one andthree are similar, nuancesexpose the journey of mind andheart as I wrote. It also demon-

strates my next point.

3. Balance correctBiblical principles with a God-seeking heart.

Correct Bible teachingis vital. However, there mustalso be a heart for God - even adesperate and distraught heart -that follows through; otherwise,doctrine becomes empty reli-gion. In the song, you see atroubled, confused heart cling-ing to what it knows to be trueeven in the midst of strugglingto do so. While struggle of theheart and mind is not a pleasantthing, it is not a bad thing.

Without it, we grow too com-fortable to seek to know ourSavior more.

Three key tools todeveloping an intimate relation-ship with Christ are prayer,mind renewal, and honest self-talk. I hope to cover these inmy next article on "MaintainingMarriage in the Midst ofChronic Illness." Until then,think about the things you'veread and wrestle with them.Just don't grow discouraged.All personal spiritual growthtakes time, patience, work, andeven mistake-making, but it isso worth it all!

Special note:May God bless you and

yours this Christmas with thefullness of His love, the vastsea of His amazing grace, andthe wisdom and strength to livefully in Him both now and inthe coming year! Lovingly inChrist, Linnette & Family

phapha

“Marriage” ...cont’d from pg 4

Linnette R Mullin is a freelance writer and author.

You may visit her atwww.LinnetteMullin.com or

contact her [email protected].



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better treatment outcomes maybe achieved. For example, inthe book a couple of practitioners stated that combiningantibiotics with herbs is a moreeffective treatment approach forridding the body of infectionsthan just using antibioticsalone.

Did you notice any commonground in your research thatthe practitioners all agreedupon?

Yes. There is no one-size-fits-all treatment approachthat works for everyone.Killing the bugs isn't enoughfor recovery. You must supportthe body, too. Be wary of treat-ments that don't have any trackrecord to support their long-term effectiveness.

I also noticed that the consen-sus seems to be that all Lymedisease testing is very poor.Would you agree with that?

Yes. Many people testnegative to antibody, as well asantigen tests. This happens fora multitude of reasons.Diagnosis must be foremostclinical; that is, based on symp-toms, and based on tests onlysecondarily. Tests can help tosupport a diagnosis, however,and for some people, is aneffective indicator of infection.Sadly, though, the CDCrequires positive results onthese tests in order for doctorsto positively diagnose theirpatients with Lyme disease,which means that up to 60% ofpeople with Lyme disease maygo undiagnosed, unless they arein the hands of a competentLLMD who understands thatpeople with Lyme don't alwaystest positive to the infection.

Some of the practitionersseem to have conflicting opin-ions about how to best treattick- borne illnesses. Wasthere any common ground orstartling difference you wouldlike to discuss?

The common ground isthat they all advocate a holisticapproach to healing, which

involves supporting the body,eliminating toxins and cleaningup the diet, as well as other fac-tors. The startling differencemight be that some are strongproponents of antibiotics, whilea few are actually against thembecause of the damaging effectsthat they have upon the body.

As you were interviewingthese doctors, did you get theimpression that co-infectionssuch as babesia, bartonella,mycoplasma, HHV-6 etc, weremuch more common that pre-viously thought?

Personally, I havealways thought that co-infec-tions are found in just abouteverybody with Lyme disease.So to me, it was not a surpriseto learn of the other infections.What was interesting to me waslearning about how sometimes,certain "random" infectionssuch as parvovirus can be pri-mary in the overall symptompicture.

Some of the medical profes-sionals’ opinions about treat-ment approaches seem to con-tradict what another medicalprofessional has said orbelieves. How would youadvise a patient to compre-hend this?

I think that most of theperspectives shared are valid,and the best treatment approachprobably depends somewhatupon the individual and his orher particular case. Whendeciding upon which treatmentto undergo, I would say to theLyme sufferer, Pray, and gowith your gut. I think there's alot to be said about what ourgut, god or intuition tells us.Research and talk to as manypeople as you can who havetried different approaches, com-pare that to your own experi-ence with different treatments,and then just pick the nextthing to try. Sometimes, it boilsdown to just picking a strategyand running with it to see whathappens. We can't always knowbeforehand what will work forus.

If you could take the adviceof all the medical profession-als featured in your book andwrap it all up into one "LymePope", would you think acure could be found? Or doyou believe that all the vary-ing opinions on how best totreat Lyme are actually favor-able?

I think any practitionerwho has had success in treatingthis disease has somethingvaluable to offer. Not all opin-ions (of all the Lyme doctors inthe world) are probably valid. Iwould be wary of receivingtreatment from any practitionerwho doesn't have experienceand knowledge in treating thisdisease. It's just too darnedcomplicated. I don't think thata single cure could be formulat-ed based on the plethora ofinformation found in this book,because being cured depends asmuch upon an individual's bio-chemistry as the perfect proto-col. And our biochemistry is fartoo complex, and the dysfunc-tions found in Lyme far toocomplicated and varied for usto be able to come up with one"Lyme Pope" or one protocolthat will work for all. Wehaven't found that yet. Butmost people can achieve greatstrides in healing if they arearmed with the kind of knowl-edge that is found in this book,because I believe that the bestof the best of what's out there isrepresented here.

How close to you think we areas a community to finding acure for Lyme and associateddiseases?

I wish I knew! I knowthat remission is possible, butfinding a cure implies morethan being able to eradicatethese tenacious, wily organ-isms. It implies being able tofix multiple systems in thebody that have gone awry orbeen damaged due to chronicillness, and that is something Ithink we have yet to learnmuch more about. The more Ilearn, the more I realize that Idon't really know anythingabout chronic illness involving

Lyme! But if Lyme diseasecould actually be recognizedfor the epidemic that it is, andif more research and fundingwere dedicated to finding acure, then yes, I believe that wecould find a cure, eventually. Ithink creating awareness aboutthe disease is a good first step,though.

What are the top 5 things youlearned in your research writ-ing this book?

1) That in order to heal,patients must be able to focuson the disease, but not make itthe focus of their lives. (Dr.Harris made this brilliant state-ment in the first chapter of thebook)

2) There is no one-size-fits-all healing protocol thatworks for everyone

3) Lyme disease isn'talways the primary cause of ill-ness. Sometimes immune orendocrine dysfunction, oranother infection are whatcaused the Lyme infections tobecome active and healingthese things is important inorder to get over the Lyme

4) No doctor has themonopoly on treating Lymedisease

5) Emotional and finan-cial support is crucial for heal-ing

Something that stood out inyour book was the questionyou asked each professional.You asked them what theythought was the deciding fac-tor in a patient's healing;Who are the patients who gotwell, and who are the patientsthat do not. Can you summa-rize your findings on this sub-ject?

Yes. Those who healhave access to financialresources. They have emotionalsupport. They have dealt withtheir emotional trauma. Theyare able to detoxify. They don'thave a million co-infections,and if they do, they have anadequate protocol for dealingwith those. They maintain agood diet. They exercise. Theydo what is required of them toget better, which means taking

their supplements, faithfullydetoxing, exercising, going tobed on time, etc. They don'tgive up. They give their proto-col a chance to work. Theymaintain a positive outlook.They focus on Lyme but focuson other things, too. Thenagain, there are sometimes noidentifiable trends in healing!

Personally, I agree withall of the above. Intuitively, Ifeel that emotional support andattitude are foremost in healing.The people that I don't seeimproving are the ones whodon't have financial or emotion-al support from loved ones.Also those who are bitter andangry, who are constantly nega-tive and suspicious of everyprotocol and doctor out there,seem to have a harder time ofit, from what I have witnessed.Yes, this disease makes peopleangry, but it's important to tryto find some measure of hopeand joy throughout the healingprocess, no matter how difficultit is.

As I researched thisbook, I kept thinking, "I wish Ihad had this information fiveyears ago when I started out onmy healing journey." If youpurchase this book, pleaseknow that you have been givena jewel. The information con-tained therein is the cumulativeresult of many years of experi-ence and research from thirteenprofessionals who have been inthe trenches with this diseaseand know what it is about andhow to effectively treat it. Itrepresents a vast amount ofknowledge that only the best ofthe best could provide. I amgrateful to all those who partic-ipated, and believe it will be avaluable resource for those whochoose to use it as a guide fortheir healing. May you all beblessed in your journey towardswellness!

For more informationabout Connie Strasheim, and topurchase her books please visit,http://www.lymeinsights.comandhttp://www.lymebytes.blogspot.com .

phapha

“Insights”... continued from page 5

disease right now, and I don't really want to sit around anddiscuss them, but I also wantyou to be aware of them. Thisbrochure explains them in caseyou are interested."

Look for other ways to ventbesides your spouse's shoul-der

"I realized that I held inall of my frustrations of painthroughout the day and thenwhen my husband walkedthrough the door I verbally'threw' them at him," sharesCheryl, who lives with chronicfatigue syndrome. "My actionsset the tone for the rest of theevening. I may have felt betterbecause I got it off of my chest,but he felt worse and it lastedthe whole evening. I could tellhe was starting to dread walk-ing through the door."

Cheryl began to putaside the last two hours of herday to spend time writing in herjournal, praying and doingsomething she enjoyed that

calmed her. "Writing in myjournal gave me the chance toexpress my frustrations, andthen prayer really began tominimize the negativity too.My husband quickly noticed adifference and it's made ourrelationship so much stronger."

Get involved in some newhobbies

How do you spend yourtime? A lot of time we may betalking about our illnessbecause we don't have muchmore going on in our livesother than trips to the doctorsor to the lab. Get involved insomething else, even if it's justa couple hours a week. Forexample, volunteer to be on aprayer chain, start readingthrough the classic booksyou've always wanted to read,put together photo albums foryour grandchildren. You willsoon discover that even youaren't that interested in talkingabout your illness when youhave much more exciting things

to share about.

Conclusion

So, the real question ishow much is too much! Thereis no perfect answer, becauseit's different for each personand each marriage. Practicebeing objective. How often areyou bringing up your illness?How do you benefit from talk-ing about it more often thannecessary? Do you need valida-tion? Understanding? Actualphysical help with tasks? It'snot wrong to admit that maybethere are days we really do justwant the attention from ourspouse and this seems to be theonly way to get it! How can weget some of these needs filledby God instead of our spouse?How is it negatively impactingyour life, or those around you,by discussing it all the time?

Next, ask yourself"What is a more creative waythat I can create intimacy withmy spouse, other than just shar-ing my aches and pains? How

can we share some activitiesand time that can help us growcloser together?"

When you want to shareabout your illness, say a littleprayer first: "Lord, I bring toyou my pain and my emotionalneeds because of it. You knowthat I don't want to burden any-one else with something theycan't fix, but I also want afriendship where I can just bemyself and really share what Iam experiencing. I really need ahug from you right now. I knowhow much my spouse caresabout me; please give me thewisdom to know when to askfor help and comfort fromhim/her and when to come onlyto You and ask you to fulfill allof my emotional needs."

Don't miss other articlesand overall support while livingwith chronic illness visit RestMinistries and subscribe tofresh content atrestministries.com and beentered for our monthly give-away. Lisa Copen is the direc-tor of Rest Ministries, author

"Beyond Casseroles: 505 Waysto Encourage a Chronically IllFriend" and founder behindNational Invisible ChronicIllness Awareness Week.

“Communicating” ... cont’d from pg 4

Support whileliving with

illness...

Read Lisa Copen’swords of

encouragement atwww.restministries.org/


NATIONAL SUPPORT GROUPSNational Multiple

SclerosisAssociation:

www.nmss.org

Alabama3840 Ridgeway Drive

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

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

www.nationalmssociety.org/alc

N o rthern 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

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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

N o rth 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 Disease SupportArizona

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]

Dorothy Leland website: www.lymedisease.org

[email protected] Parker

303-447-1602 [email protected]

Connecticutwww.timeforlyme.org

914-738-2358Meetings: first Thursday of

every month from 7-8:30 p.m.at the Greenwich Town Hall

National Support:truthaboutlymedisease.com/

Dana Floyd, directorLDA of Iowa

PO Box 86, Story City, IA515-432-3628

[email protected]

[email protected]

[email protected]

N o rth CarolinaStephanie Tyndall

[email protected] South CarolinaContact Kathleen at

(864) [email protected]

Lyme Disease Support

New MexicoVeronica 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.

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TEXAS :

Greater Austin Area LymeCouncil. Teresa Jones

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Dallas/Ft WorthJohn Quinn

[email protected]

HoustonContact: Teresa [email protected]

League City/ ClearLake& NASA Area

Sandra [email protected]

Washington StateAlexis Benkowski

[email protected]

WI / IL / MN Regional areasContact PJ Langhoff

(920) 349-3855www.Sewill.org

www.LymeLeague.com (Intl)

Western Wisconsin LymeAction Group

Marina Andrews 715-857-5953

Texas LymeDisease

Association

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www.txlda.org

All donations are tax exempt.

Donate online with PayPal:[email protected]

Military LymeDisease Support

Military Lyme Support is anonline source of information andemotional support. This site isfor Military Members, Veterans,and their family members whosuffer from Lyme and other vec-tor-borne diseases. Members arestationed in the United Statesand abroad.

http://health.groups.yahoo.com/group/MilitaryLyme/

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This job will allow you to work from home! We are in need ofpeople who have good telephone skills as well as good emailcommunication etiquette.

Our advertising sales people will need to be able to generate adsales by contacting people, businesses and companies whoseproducts or services would benefit the PHA readers.

This job is a commission-based position with earnings based ona percentage of the ads sold. It won’t pay your mortgage, butyou will likely get gas or grocery money if you work hard to getnew clients.

We are looking for someone with experience in ad sales orsomeone who is self-motivated and passionate about the causeof Lyme disease awareness.

It will be important that the ad sales person have some internetresearch ability to generate leads for prospective advertisers.We will provide you with an electronic press kit and training byphone and email.

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FEATURES

Meeting the Challenges of Chronic IllnessesThe Landford Foundation, LifeLyme, Inc. & P.A.N.D.O.R.A., Inc

LIFELYME originallybegan as a Lyme support groupin Tallahassee, Florida. Ouroriginal mission was to act as aeducational resource for Lymedisease and related illnesses. Byacting as an educationalresource for both patients andadvocates, LIFELYME hopedto effectively educate the pub-lic, physicians and other healthcare professionals about Lymedisease and its relationship toother illnesses bringing aboutbetter diagnosing and treatmentof Lyme disease, co-infectionsand the many illnesses thatshared similar symptoms.

The formation of THELANFORD FOUNDATION -Lifelyme, Inc. a non-profit 501(c)3 Charity was established in2006. A partnership betweenLIFELYME, Inc. and PANDO-RA, Inc. followed soon afterattending the IACFSConference in early 2006 host-ed by PANDORA, Inc. held inFort Lauderdale, FL. The con-ference was hosted by PANDO-RA, Inc. a Chronic Fatigue/Myalgia Encephalopathy,Encephalitis, (CFS/ME)Fibromyalgia, Gulf WarSyndrome (GWS), MultipleChemical Sensitivity (MCS)non-profit located in Miami,FL. PANDORA's founder andpresident, Marla Silvermaninvited LIFELYME, Inc. tosponsor a speaker for theInternational Alliance forChronic Fatigue Syndrome(IACFS) Conference. Wechose Garth Nicolson, PhD. awell known Gulf WarSyndrome researcher andauthor. Shortly after this con-ference PANDORA, Inc. recog-nized Sandi Lanford,Founder/President of THELANFORD FOUNDATION -Lifelyme, Inc. by namingSandi 'AdvocateExtraordinaire'. The recogni-tion was for her advocacy workand dedication to create aware-ness for Lyme Disease inFlorida and beyond.

On January 19th, 2008 aconference entitled "Similaritiesand Paradoxes in ChronicIllnesses" was held in St.Petersburg, Florida. The eventwas sponsored by THE LAN-FORD FOUNDATION -Lifelyme, Inc., the Universityof South Florida, and MortonMease Hospital. The confer-ence was notable as it broughttogether for the first timespeakers from the Lyme com-

munity and the ChronicFatigue/Fibromyalgia commu-nity. The sharing and resultingmerging of information on theconnection between Lyme dis-ease to ChronicFatigue/Fibromyalgia etc. at theconference was a eye openerfor many of the physicians andhealth care professionalsattending the conference. Theconference also resulted inbringing attention to the obvi-ous fact that similarities andparadoxes exist in chronic ill-nesses and more and moreresearch is connecting these ill-nesses to infections, both bacte-rial and viral. Shortly after theconference, PANDORA, Inc.added Lyme disease to the listof illnesses their organizationincluded under the umbrella ofNEIDS. More recently, theFibromyalgia Clinics acrossthis country have now alsoadded Lyme disease to the dis-eases they diagnose and treat.

It was Marla Silvermanwho came up with the name -Neuroendocrine ImmuneDisorders (NEIDs). Under theumbrella of NeuroendocrineImmune Disorders are listed thefollowing diseases: ChronicFatigue Syndrome,Fibromyalgia,, Gulf WarSyndrome, Multiple ChemicalSensitivities, and PersistentLyme Disease. All of these ill-nesses share overlapping symp-toms with Persistent LymeDisease. The latest research iseven connecting Autism andAlzheimer's to the infectiousagent Borrelia burgdorferi (Bb).In addition to Bb the bacteriathat causes Lyme disease, thereare other pathogens called co-infections that often accompanyLyme disease. They areBabesia, Anaplasmosis,Mycoplasma, Rocky MountainSpotted Fever, Bartonella, andRickettsia.

Lyme disease is thefastest growing infectious dis-ease known to be spread byticks, mosquitoes, fleas andmites. The CDC (Centers forDisease Control andPrevention) records an averageof 20,000 newly reported casesof infection each year.However, the CDC also saysthat only one in ten cases whichmeet its strict surveillance crite-ria are reported. Therefore, theannual number is at least200,000 new infections occureach year in the US. Recentstudies at the University of

New Haven, New HavenConnecticut by Eva Sapi , andat the University of NorthFlorida, Jacksonville, Floridaby Dr. Kerry Clark, PhD.Epidemiologist, show that ticksare infected with not only theLyme bacteria Borrelia but arecarrying Mycoplasma,Bartonella, Babesia,Anaplasmosis, Rocky MountainSpotted Fever, and Rickettsia.Dr. Clark has even discovered anew strain of Bb in the state ofFlorida.

Recently the collabora-tion of THE LANFORDFOUNDATION - LIFELYME,Inc. and PANDORA, Inc. hasresulted in a grass roots initia-tive to establish aNeuroendocrineimmuneDisorder Research Center. Theestablishment of this center willbe based on the philosophy thatthe similarities in symptoms ofNEIDs are the human bodiesresponse to similarities in theunderlying pathophysiologiesthat cause these illnesses.Neurological and psychiatricproblems and auto immune dis-eases are implicated in patientsdiagnosed with NEIDs.Research is connecting Autism,Alzheimer's, MS, Parkinson'sLupus and other auto immunediseases to bacteria/viral infec-tions, and immune dysfunction.Immune deficiency in cancerpatients is well documented,and tumor cells have developeda variety of cellular and molec-ular mechanisms to avoid anti-tumor immune responses.Accordingly, the cornerstone ofthe NEIDs research mission isthat discoveries and advancesmade in any one of the NEIDswill be beneficial to otherNEIDs and chronic illnesses ingeneral. Lyme Borreliosiscauses, mimics, is manifestedas, is misdiagnosed as or is acontributing factor to over 300medical conditions.

The Mission for theNeuroendocrine ImmuneCenter

The NEI disorders(Neuroendocrine Immune)Center of America is the firstInstitute of its kind in theNortheast. It is based on thephilosophy that the similaritiesin symptoms of NEI disordersare the human body's responseto similarities in the underlyingpathophysiologies that causesthese disorders. Accordingly,

and the cornerstone of the NEICenter of America's mission isthat discoveries and advancesmade in any one of the NEIdisorders will be applicable andbeneficial to other NEIDs.

At its inception, theNEIDs Institute of America willinclude (in alphabetical order)the following disorders/illness-es: Chronic Fatigue Syndrome(CFS), Fibromyalgia (FM),Gulf War Syndrome or Illness(GWI), Lyme Disease includingRelapsing and Persistent LymeDisease (LD), and MultipleChemical Sensitivity Syndrome(MCSS). Other illnesses may,and probably will, will beadded as circumstances permit.

The goals of the NEI Center ofAmerica are:

1. To promote research of NEIdisorders

2. To conduct research on NEIdisorders

3. To provide patient care andtreatment for NEI disorders

4. Serve as a repository of NEIdisorder research data and pub-lications

5. Serve as a site of exchangeof NEI disorder research dataand publications.

6. Serve as a repository of NEIdisorder patient care data andpublications

7. Serve as a site of exchangeof NEI disorders patient caretreatment protocols

8. Serve as a resource for NEIdisorders researchers by provid-ing information, publishinginformation and sponsoring sci-entific meetings.

9. Serve as an informationresource for treating physiciansby disseminating the latestadvances in NEI disorders diag-nostic and treatment protocols.

10. Provide educational andsupport programs to patientsand caregivers using social net-works available technologyimplemented through local andnationwide outreach programs.

11. Serve as a referral officeand liaison to any of the avail-able social services for the dis-abled and chronically ill in theareas of: medical access, pre-scription drugs, MEDICARE,MEDICAID, Social SecurityDisability and other disabilitysystems, special transportationservices, Food Stamps, physicaland occupational therapy, pub-lic housing, hospice, fooddelivery, psychological assis-tance and home aid servicesand any other local, state andfederal assistance programs inexistence, which will enhancethe quality of life of these indi-viduals and will assist theirfamilies in their care.

phapha

The Landford Foundation

LIFELYME, INC.

Hope. The Only Antidote!P.A.N.D.O.R.A.

Patient Alliance for Neuroendocrine Immune Disorders

Organization for Research Advocacy

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The Hidden Epidemic

that's being built in Gilbert,Arizona. I'm very much anadvocate for that project withBill and Sherry Lund. I havebeen blessed by the people whohave come into my world. Itseems that there is a wholemovement that's demandingthis healthcare of the future. Inotice that a lot of the doctorswhom I have met, who havecome into Envita, just can'treadily change out their equip-ment. You see, it costs two tothree million dollars for stan-dard equipment, and they stillhave to make payments on it.Then there's the cost of trainingdoctors, too.

I also think the youngergeneration is much wiser andopen to the move toward natu-ral healthcare, because they seethat the other way just isn'tworking. Now, I'm not againsttraditional medicine. I justthink that if you're sick, youwant to make sure you have allthe answers and options.

Tina: Which is whyinformed consent guidelinesfrom the American MedicalAssociation are so important.Every physician is supposed toinform their patients of alltreatment options available tothem, along with the risks andbenefits, whether or not suchtreatments are covered byinsurance.

Sandy: The problem isthat most doctors are not edu-cated in both worlds of medi-cine. So, if you can build acenter that has MD's, DO's andND's , now we're talking medi-cine. That's when we willhave our bases covered. Whycan't you have the top cardiolo-gist with the top naturopathicdoctor working together for thegood of the patient? Everycountry and every continent hasthem. Why are we shunningone field of medicine? One ofthe reasons is that traditionaldoctors don't know enoughabout that field. It might takethem another six years to get adegree to find out about thatside of it. It's silly, but that'sthe reality.

Our Fullness of LifeFoundation is educating thepublic. One of our greatestevents that transpired was whenthe Foundation premiered theUnder Our Skin video here atour office in Scottsdale,Arizona. We had about 350people attend that are nowaware of Lyme disease. If thepublic only knew about how itaffects us. Even though Lyme

disease is not a good thing tohave, you can still have a greatlife, and knowing what youhave is ninety percent of thebattle in living with it.Knowing that there's a centerright here in our own backyardthat has become one of the toptreatment centers for Lyme dis-ease is unbelievable. And ithappens to be Envita, the placethat saved my life from cancer.

Tina: What about thespiritual side of your experi-ence and how it relates to yourstarting the Foundation?

Sandy: You know, Ihave surrounded myself withpositive people and positiveattitude, especially with myhusband, because he was myguardian angel throughout thiswhole ordeal. I never wouldhave looked at the integrativeside had he not done theresearch. I was trusting whatthe traditional docs were say-ing. We had so many of ourfriends and family membersthat were saying, "Just do whatthe doctors at the Mayo aretelling you! Are you crazy?You have advanced cancer!"

That was the hardestdecision we ever had to make,because we were in that zonewhere we had to make a deci-sion. Then we were in thatzone again four months later indeciding whether to continuethe chemo or just go with thetreatments that were offered atEnvita. What do you do in thatsituation? I didn't know whatthe outcomes would be. All Iknew was that my outcome atthat time wasn't good. Wherewas my guarantee that I wasgoing to make it? There wasn'tany.

So, what it reallydepended on was faith. I knewhow bad the chemo was for mybody. I knew how it made mefeel, and I didn't like it. I hatedit. I hated the smell and I hatedthe taste. And I'm telling you,prayer came into the mix ofthat equation as to what to do.Yet, there was a calming sensein thinking, "What do I have tolose?" I had nothing to lose bygoing to Envita. I thought thatif that ends up not being theright choice or the best choice,at least I'll have lived a qualityof life till the end versus a lifeof misery.

The power of prayerand knowing that I had faithand belief in God made mebelieve that this was the direc-tion that I was supposed totake. I just had that sense of

knowing, and there was some-thing about the founder ofEnvita, Dino Prato, that gaveme a calming sense. I believethat he has been anointed to bethe one that breaks out andgoes against the norm. He isvery passionate, because hebelieves in healing and curingall disease. It's his life's mis-sion. How could I not followthat? How could I not, throughthe grace of God, listen?

So, prayer is ninety per-cent of the mental. It helps youthink in the right direction, soyou don't worry about the con-sequences, because you havethat faith and knowing that youhave nothing to lose. It's some-thing that comes from within,and you just have a calmingsense to just see it through tothe end, however long it takes.

Tina: That's reallybeautiful, Sandy. Really beau-tiful.

Sandy: Well, thank you. Tina: And I'm so glad

you were able to listen to that,because not everyone has thestrength to follow the prompt-ing to move in a certain direc-tion.

Sandy: That's the hard-est thing. I say this, becausemy husband and I have beenvery successful with our busi-ness. One of the most reward-ing parts of our business is see-ing families win with theirfinances. We can take someonewho is in debt, get them out ofdebt, see that their kids go tocollege and see that they areable to retire comfortably. Wecan put a family in business forthemselves and watch theirbusiness grow until they'remaking a six-figure income.This changes their lives in apositive way. They're just ordi-nary people like me. I was awaitress before, but now I'machieving much greater successin life. It's really about howyou feel about you that deter-mines your life. If you feelgood about you and what youdo with your life, life is great,and I think people are alwayssearching for that.

But you know, to meetDino Prato when he needed meat the most important time inhis life and his career, when hewas starting Envita, was reallyspecial. You see, I was his firstpatient during the first week hewas open, and I also neededhim at the most importantmoment in my life. So, wehave this very special bond.I'm also connected to a 125,000

person sales force that knowswho Mark and I are, becausewe are motivational speakers.We speak around the countryon how to become successful,how to win in business andhow to win in life.

As soon as I startedtelling my story and speakingabout Envita, people wanted toknow more about it. I can't tellyou how many of our compa-ny's leaders have been throughEnvita to be treated and howmany friends and family mem-bers they know who have alsobeen to Envita. By spreadingthe word like that, Envita hasgrown tremendously.

As I mentioned, I'mfrom Canada, and we didn'tknow anyone in this countrywhen we moved here twelveyears ago, but God found thesetwo strangers in this city. Whowould have thought that Iwould be an advocate forEnvita by starting the Fullnessof Life Foundation for the kids,so they can be treated atEnvita? I'm also working withwonderful people who arebuilding hospitals to put all ofthis in the forefront. It's reallygreat!

Tina: Thank you for allthat you're doing, Sandy.

Sandy: Well, you, too.We need more advocates. OurFullness of Life Foundation isholding a big benefit concert inLA on October 17th of thisyear. Mark and I also sing andplay in a band, along with someother people in our company. Ising and Mark plays guitar. Weplayed for our company's cor-porate event in front of 60,000people at the Georgia Dome.

We do benefit concertsand a Celebration of Life con-cert for the Fullness Of LifeFoundation. Our band is calledOne Night Stand, because wewere only supposed to play onenight at a charity event in LasVegas ten years ago. Eventhough we had never playedbefore, we played so welltogether that now we're doingthe Foundation's big event.There should be up to 10,000people at the ConventionCenter in LA. So, we'respreading the word. We'redoing a Primerica fundraiserthat day, and I've got all the topleadership and motivationalspeakers scheduled. The topicsare health and winning in life inall areas, with God first, familysecond and business third.

We hosted the BelieveConcert last year with Chevy

Chase, and it was fantastic! Tohave Chevy Chase and wonder-ful musicians grace the stagewas just amazing. ChevyChase believes in what we'redoing. We were also blessed tohave Dennis D'Amico, a greatproducer who produces all ofthe benefit concerts for PaulMcCartney and the LindaMcCartney Foundation, help uswith that event.

I had never met the manbefore, but one of our boardmembers who is a musician,suggested we meet Dennis. So,Mark and I flew to New Yorkand had lunch with him, and heserves as an advisor on ourboard. He produced the con-cert and brought in all of theseartists for next to nothing,donating their time. AndChevy Chase donated his$50,000 to the Foundation.And he's going to be back nextyear when we do it again in2010.

So, we're serious aboutbeing around for a long time,and I believe in a grassrootseffort. We are a voice for thepeople. I really believe that wehave a cause that's like no oneelse's. There is no other foun-dation that I know of that wantsto change the world in such away on how people think abouttheir healthcare options. Weneed to pave the way for thesedoctors who want to heal andcure the sick, so they can do itwith every means possible. I'vededicated my life to this mis-sion!

Sandy Yozipovic is aCo-Founder and serves asPresident of the Fullness of LifeFoundation at www.fullness-foundation.org.

Tina J. Garcia isFounder and President of LymeEducation Awareness Program(L.E.A.P. Arizona) at www.lea-parizona.com.

“Choices” ...cont’d from pg 3


FEATURE

Clarifying the Goals of the NeuroEndocrineImmune(NEI) Center™ and the Inclusion of Lyme Disease

The NeuroEndocrineImmune (NEI) Center™ (ofNew Jersey) is dedicated toresearch, patient care, educa-tion, and community socialservices for patients with agroup of illnesses that affect thenervous, endocrine, andimmune systems. The body ofcurrent scientific research con-firms that these illnesses sharecommonality and overlap ofsymptoms, which suggestshared pathophysiologicalmechanisms that producechronic illness in these patients.For example, in recent and in-press publications, researchershave reported that approximate-ly 30% of previously diagnosedchronic fatigue syndrome(CFS) patients test positive forLyme disease (LD). TheCenters for Disease Control andPrevention (CDC- WilliamReeves) at the May 27-28,2009, CFS Advisory Committeemeeting stated that Lyme dis-ease is known to be a potentialtrigger for CFS. Therefore, ifsome patients with CFS aretreated for LD, their quality oflife and health will improveconsiderably.

The NEI Center™ isdedicated to increasing knowl-edge, improving patient care,developing new therapies, andserving as a repository and dis-penser of scientific informationregarding these illnesses. It isnot the intent or role of centerpersonnel to classify or reclas-sify or to name or rename anyof these illnesses.

The NEI Center™ iscommitted to the developmentof a robust, healthcare commu-nity within the State of NewJersey. We believe that anyinterested party who wishes tomount a research, patient care,educational, or social servicesprogram within the state, andwho is willing to abide by thelaws and safeguards provided

by the state and the federalgovernments, has the right toengage in such activity withoutthe infringement or oppositionof another organization.

Representatives of the NEICenter™ believe it is unfortu-nate and misguided for analleged patient advocacy groupto oppose efforts to enhanceresearch, patient care, educa-tion, and community socialservices for an illness that thepatient advocate group claimsto represent. The motivation ofsuch a group is suspect.

With regard to recentlywritten materials already beingcirculated on the Internet andthe comments made by apatient advocate group that hasgone on record as opposing theinclusion of Lyme disease inthe disorders to be studied atthe NeuroEndocrineImmune(NEI) Center™, we respond:

* The NEI Center™ (alsoreferred here as the Center) willserve as a repository for all datagenerated by its investigatorsand by those researchers whowish to submit their data to theCenter.

* The NEI Center™ has not,and will not, address the issueof the classification of any ofthe illnesses being studied with-in the center or elsewhere. It isthe position of the NEICenter™ that the classificationof illnesses (be they diseases orsyndromes) is the responsibilityof the World HealthOrganization, which cataloguesand classifies the recognizedillnesses of the world.(ICD10/ICD9). It would obvi-ously be presumptive of theNEI Center™ to usurp orattempt to alter the work of theWorld Health Organization.

* The NEI Center™, as does

Western medicine, recognizesthe distinction between sympto-matic treatment and curativetreatment of illness. Althoughcurative treatment is the idealgoal of health care, curativetreatment is not available for allillnesses. When such treatmentis not available, or even if it isavailable, symptomatic treat-ment is standard medical proce-dure. Thus, for a patient withpneumonia, antibiotic treatmentmay be curative, but such treat-ment does not preclude thephysician from dispensing med-ication that will ease thepatient's cough or reduce his orher fever.

* The NEI Center™ believesthat many neuroendocrineim-mune disorders have complexetiologies. Many researchersand physicians feel that long-term, chronic infection willdeplete and invoke changes inthe immune system. Multipleco-infections are now beingfound in many chronicallyinfected patients. To precludethe investigation of co-infec-tions in patients with Lyme dis-ease based on the fear that suchfindings would suggest immunesystem abnormalities as statedby this patient advocate groupin Lyme disease patients (seeattachment), does a significantdisservice to Lyme diseasepatients and prevents the free-dom of scientific inquiry that isthe basis of success in biomed-ical research and the develop-ment of new therapeutic agentsand procedures.

* The NEI Center™ maintainsthat Lyme disease, as well asthe other neuroendocrineim-mune disorders (NEIDs) thatthe center embraces, is not cur-rently classified as autoimmunedisorders. Unless future scien-tific research demonstrates oth-erwise, Lyme disease will

always remain in its currentclass of illnesses and thus notbe included or classified as anautoimmune disorder. However,the current and/or future classi-fications of Lyme disease donot preclude an autoimmunecomponent from being presentin this disease. The NEICenter™ and the biomedicalresearch community should bepermitted the right to investi-gate the possible presence of anautoimmune component inchronic or persistent Lyme dis-ease (PLD) or the induction ofautoimmune defects in personsexhibiting chronic or PLD.

* The NEI Center™ believesthat the inclusion of Lyme dis-ease in the center's mission willaccelerate research and thedevelopment of therapeutics forpatients with LD as well asspeed up research and develop-ment of therapeutics for illness-es with shared and overlappingsymptoms.

* The concept and mission ofthe NEI Center™ is a scientific,medical, pharmaceutical, andpatient-driven grassroots initia-tive that aim for quality of lifesolutions for a large populationof Americans that for far toolong have been forgotten andunderserved within our currentmedical system. The overallconcept of the NEI Center'smission is already fully sup-ported by administrators withinthe CDC, the National Institutesof Health (NIH), and theVermont Department of Health.

* The NEI Center™, as pro-posed, complies with the newbiomedical research modelbeing promoted by the NIH andwill stand as an example of theimplementation of its RoadmapInitiative.

* The enhanced and accelerat-

ed study of neuroendocrineim-mune illnesses, including Lymedisease, at the NEI Center™can only improve the knowl-edge of and therapeutics for allthese illnesses. There are nonegative aspects to the inclu-sion of any related illness in themission of the NEI Center.

We appreciate theopportunity to respond to youon this important issue and weare at your disposal for anyquestions you may have onthis crucial piece of proposedlegislation. It is with great grat-itude that we say that passageof this historical piece of legis-lation by the New JerseySenate, complementing the leg-islation already passed in theAssembly, will not only be amoral and significant victoryfor the citizens of the greatState of New Jersey, but it willbe one that will impact millionsof Americans. Passage of thisresolution will happen becauseof your vision, compassion, andcaring for the citizens you soproudly represent. You will be achampion for not only our com-munity of suffering, but forevery American affected withthese significant healthcarechallenges. You will be makinga difference in the lives of themany individuals whose voicesare being silenced by the devas-tating consequences of these ill-nesses.

[This letter was addressed toNew Jersey Senator “Kip”Bateman and the NJ Senateon behalf of NEI when aNational Lyme Advocacygroup opposed the inclusion ofLyme in the NEI spectrum.The PHA whole-heartedly sup-ports the inclusion of Lymedisease in the NEI Spectrum.]


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