question

[Guest guest]

I feel badly that you have had this experience but unfortunately a common one.

While a positive PCR is conclusive for Lyme disease a negative does not mean that you do not have it. The PCR is a highly specific test but not as sensitive. I have heard it explained before and it always made sense to me that if you have a pool and you threw a bucket of ping pong balls into the pool- you knew first hand that ping pong balls were present in the pool- but then you attempted to pick up the bucket again and retrieve the ping pong balls one bucket at a time - I guess you get the picture that it would be difficult to get a bucket of water with a ping pong ball.

The following urls have many helpful articles to back up what I am explaining:

http://www.socialeyes.net/lyme/ Lyme disease Misdiagnosed as Multiple Sclerosis (MS)

http://www.geocities.com/HotSprings/Oasis/6455/bibliographies-links.html - over 6500 categorized links on Lyme disease

My advice would be to get another opinion from a doctor that will fairly consider Neuroborreliosis-or Lyme in the first place before advising you that it is MS.

Best wishes to you,

Edina

[ ] question

To All, I had a lumbar puncture 2 weeks ago. 4 ccs were sent to Igenex and 4 toa local lab testing for demyeliting bands. The Igenex test (PCR) wasnegative, the myelin test was positive. I was positive on Western Blot 2years ago and Dr. J. has treated me with abx including 60 days of Rocphin (ayear ago). I have not improved and the new local neurologist believes I hadLyme but my current symptoms are do to MS and wants to treat for MSincluding steroids. Has anyone else had similar experiences? What is the meaning of thenegative PCR? I have severe neurological problem, demyeliting and can hardly getaround. Any impute would be appreciated.Larry NVWelcome to Easy Reference:Send a blank email message to: -Unsubscribe - Unsubscribe from the list -Digest - Switch your subscription to a digest format -Normal - Switch your subscription to normalPlease send messages not related to Lyme disease (this includes humor and information about other diseases) to -Offtopic The archives can be accessed at The chat room is always open! /chat

[Guest guest]

Larry, I'm sure you know the danger of treating LD with steroids (or

any infectious disease, for that matter). Seems like you would want

to VERY sure it wasn't Lyme before starting on such a treatment. Not

sure I would believe that Lyme was followed by MS.

[Guest guest]

Some, including LLMDs, believe that Lyme and MS are the same disease.

Rita in CT

atthelake@...

[Guest guest]

, This is the MD who you never saw before? You're not doing anything wrong it is the medical establishment that is ignorant. I would make a list of all your symptoms and what aggrevates them if anything. Then try to keep a daily diary of your symptoms and activities and how one affects the other.

Write everything down! When you go to the MD you'll have your symptom list and diary to share also any tests that you had anything! How do your symptoms affect you on a daily basis? ie: Can only stand for 5 minutes while doing dishes, can only walk 4-7 feet? without collapsing. You understand?

Then you have something to go by. PS. How did you like the watch?

FrancineNJ

[Guest guest]

>Does anyone have any suggestions as to how I should go into this appt so that I can at least get a trial of abx?

Say you were bitten by a tick last Autumn (fall) and that you had an EM rash. If doctors won't learn anything about other manisfestations of Lyme, have the ones they know of!!! It should at least get you a trial run with abx!

Nelly (in France)

[Guest guest]

Glad you liked it. Don't worry about the rest. Welcome for the tips.

Francine

[Guest guest]

why not order some lyme kits from IgeneX.....to take to the doctor..or have

delivered to the doctor so it will be there when you go....tell them since

you have learned of lyme for your daughter...you have realized that you have

had many of similar symptoms , though not as severe, and thought it was

attributed to aging...and you want a chance/opportunity to rule out lyme for

yourself...

it could be the doctro you are going to see in SF will be lyme

literate...it is not crazy if one family member has lyme , not to check

others if they have some peculair symptoms...otherwise find another

LLMD..doctor...

i took the igenex kits to a doctor...and asked for his signiture and did

the rest myself..i did LUAT and fed-x it back to Igenex...

In a message dated 4/3/01 5:58:08 PM, NMcmu6937@... writes:

<< Does anyone have any suggestions as to how I should go into this appt so

that I can at least get a trial of abx? Or is this what everyone has to deal

with? It really sucks big time. I'm 60 in a couple of months, maybe I

should just forget it all and live like a sick old woman. It seems society

sees us that way. Oh gosh, I'm on the pity pot here, sorry, just that my

tolerance level has been shot down the tubes.

>>

[Guest guest]

I felt much the way you do..and for awhile just went the doctors game...but I tell you something I was tired of feeling trapped, tired of being sick, tired of feeling stupid.

I feel much more impowered now that I have decided to fight. It also has helped my self esteem. Lol...strange though that I have had boughts of crying and anxiety now that I feel better about myself and my situation and a ray of hope in my little tunnel..but I believe it is just all my past frustrations and stresses coming out. Even though I have been crying and have anxious feelings I feel happier than I have in a long time...lol...does this make sense to anyone else.??

Please keep fighting don't fall into the hole I was in...doctors are draining me with their stupidity but at least I feel better about myself fighting and who cares if they call me a hypochondriac...and faking that is their oppinion and I know better. One day I will find someone to listen to me...but I just got to keep trying...Hope is a faboulous thing hold on to it...it is a great gift and have faith in yourself and your instincts.

Love,

Cyntha Landon Idaho

[Guest guest]

Hi Francine,

Thank you for your tips. I must say that I didn't expect the amt of responses I am getting, buta truly apprecieate them. I alway take in my list of symptoms (that is when the eye brows lift), and I have a daily log (well, almost daily), and all my test results. I hadn't thought about what I can't do because of the symptoms, like hold my grandson for more than a minute, or stand at the sind to wash dishes without my back killling me. I will put that together also.

I love the watch. Her birthday is the 17th so will be giving it to her then as well as taking her to Red Lobster for dinner on gift certificates I have earned by doing rewards programs oonline. When YOu are on SSD you have to be creative in how you manage. lol.....

I am still trying to get people to order from the AVon, but this area is so inundated with reps. that it is difficult.

The human spirit is stronger than anything that canhappen to it.

C.

[Guest guest]

Say you were bitten by a tick last Autumn (fall) and that you had an EM rash. If doctors won't learn anything about other manisfestations of Lyme, have the ones they know of!!! It should at least get you a trial run with abx!

You know, I have thought of that!

The human spirit is stronger than anything that canhappen to it.

C.

[Guest guest]

I have had the WB and LUAT by Igenex and will take the results in with me. I am assuming (I know, assume nothing) that this dr. knows Nick from Igenex. Now I just read that there is another test fro IGenex to replace the LUAT, so there is the possibility of having to do that and wait god only knows how long for the results of that before anything can be done. I really am going to push for a good trial of abx. I have read that with chronic lyme that IV abx are better, but I think that is way too much to ask for.

I wnat to thank you all for your responses, support, and advice in this. It really is appreciated.

The human spirit is stronger than anything that canhappen to it.

C.

[Guest guest]

Larry,

Dr. Burascano's symptom list is included in his paper, Advanced Topics in Lyme Disease -

Diagnostic Hints and Treatment Guidelines for Lyme Disease and Other Tick Borne Illnesses at

http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/9c1ac876bb7897f5852568ec0056eb02?OpenDocument

Phyllis

-----Original Message-----From: larryyenko [mailto:larryy@...]Sent: Thursday, April 05, 2001 10:55 AM Subject: [ ] questionTo All, I've been trying to find BURRASCANO's list used to diagnosis Lyme. Iremember that exposure in an epidemic area is one of the criteria for theclinical diagnosis. Any help would be greatly appreciated.Larry NVWelcome to Easy Reference:Send a blank email message to: -Unsubscribe - Unsubscribe from the list -Digest - Switch your subscription to a digest format -Normal - Switch your subscription to normalPlease send messages not related to Lyme disease (this includes humor and information about other diseases) to -Offtopic The archives can be accessed at The chat room is always open! /chat

[Guest guest]

Phyllis,

Thanks.

Larry NV

[Guest guest]

-

I just happen to have the following.....

Dr. Ritchie Shoemaker, MD was a guest upon the " Lyme Borrelia Out-Reach Fdn.

TV Series, " April 26, 2000. Shoemaker is a medical dr. and holds a BS in

Molecular Micro Biology. He is an author, writer, ecologist, naturalist, etc.

He has written the worlds 1st article on the diagnosis and treatment of

Chronic Pfsyteria Human Illness Syndrome, and his book entitled " Pfsyteria "

discusses this and the toxin involved. He has been published in the Lancet,

re: Learning and impaired neuro cognative problems.

He is a graduate of Duke Univ, resides in Pocomoke City, MD. His book is a

story of media, politics, economics, medicine and a remarkable scientific

discovery.

CONTENT OF THE SHOW:

Chronic neurotoxic symptoms refractory to antibiotics in 51 patients

following a tick bite were treated w/ (CSM) Cholestyramine according to

protocol previously used successfully in patients w/ Estuary Assoc. Syndrome.

Prior to treatment, the chronic Lyme disease patients, 27 w/ and 24 w/out a

positive Lyme diagnostic test, had a statistically significant deficit in

(VCS) aka visual contrast sensitivity greatest at 6 cycles per degree if

visual arc, relative to 23 control patients.

After CSM treatment, all patients had abatement of their clinical syndrome A

symptom " intensification " reaction, similar to " but more intense " than

typical herxheimer reactions, experienced previously during antibiotic

treatment, occurred early in CSM therapy, especially in patients ill longer

than 3 yrs. The intensification reaction was reduced with " pioglitazone

therapy or prevented by pre-treatment with piogliazone, a known peroxisome

proliferator-activated receptor (PPAR) gamma agonist. No relapse of symptoms

was observed in patients followed as long as 11 mos.

These results suggest that VCS measurement is a useful tool for assisting in

the diagnosis of chronic LD and that CSM treatment restores VCS and provides

symptomatic relief in chronic LD patients, presumably by greatly enhancing

the elimination of endotoxin(s) released by borrelia spirochetes and/or

during antibiotic treatment.

The intensification reaction may result from different gene activation by

mobilized toxin(s) which induces release of cytokines, including tumor

necrosis factor alpha, but can be countered or blocked by the PPAR gamma

agonist activity of pioglitazone.

***********************************************

Studies are underway and it is hoped for 2000 pts. to be contained in the

study using CSM in the antibiotic treated patients w/ monitoring by " visual

contrast sensitivity testing " . Study three: will deal with prevention or

reduction of severity of the intensification (herx) reaction by treatment

with pioglia double blinded, placebo controlled trial.

************************************************

Laser doppler studies are also being researched. As part of a study when

taking the pioglitazone or its placebo you must have random, finger-stick

blood sugar tests done on a reg. basis. The patient must agree to fax VCS

scores at reg. intervals if not assessing the website

www.chronicNeurotoxin.com

******* IMPORTANT ******

With the CSM treatment, the cholestyramine binds toxins in the intestine and

then

removed in the bowel. The Laser doppler test FYI shows the microvascular

(capillary) hypoprofusion changes in the retina and optic nerve head that VCS

represents.

The test will show distinctive differences in capillary flow produced

variously by obstruction, spasm or margination of white blood cells (TNF

effects).

A lyme patient currently under antibiotic treatment was also a guest on this

show and the VCS test was performed.

FYI*** CSM or Cholestryamine is an FDA approved medication used to reduce,

lower cholesterol in patients w/ high cholesterol levels. It binds bile

salts, cholesterol and biological toxins in the small intestine. Because it

binds toxins tightly, they cannot be re-absorbed, and is harmlessly excreted

in the stool, thus curing the chronic toxin-mediated illness.

This is NOT a cure for lyme borrelios!!! It does not kill spirochetes!!

ALSO#####

A New Diagnostic Tool And A New Drug Therapy Provide Major Weapons Against

Surging Epidemic

By Ritchie Shoemaker, M.D.

Although most people don't realize it, one of the most debilitating diseases

of the modern world can often be found crawling around in the hedges, shrubs

and tall grasses of the typical American backyard.

d by several common species of tick, Lyme Disease - which leaves many

of victims struggling with long-term Chronic Lyme Disease (CLD) - is one of

the fastest-growing infectious-disease epidemics both here and abroad,

according to recent research.

How widespread is the current U.S. outbreak of this bacteria-triggered

illness - which leaves many of its victims struggling for years with fatigue,

headache, mental confusion, memory impairment, shortness of breath,

sensitivity to bright light, abdominal pain, chronic muscle and joint pain

and several other nasty complaints? (Symptoms can vary, but most CLD victims

experience from four to six of the eight listed here.)

While some estimates put the total number of new cases each year at 300,000,

the actual spread of Chronic Lyme is extremely difficult to measure. There is

disagreement among the nation's physicians over the duration of the disease.

According to some influential physicians, the bacterial infection can be

cured in three weeks with heavy doses of antibiotics. Conventional wisdom

dictates that if we drive out the Lyme bacteria (a spirochete named Borrelia

burgdorferi) with germ-killing drugs, the painful symptoms of the disease

will rapidly leave the patient.

But this assertion regarding the duration of CLD is now being challenged by

thousands of Family Practice physicians around the country. Increasingly, the

Family Practice docs are grappling with cases in which the major symptoms of

Chronic Lyme persist for years, despite proper antibiotic treatment in

patients.

Until quite recently, physicians were hampered by the lack of a reliable

diagnostic test that could confirm the presence of Lyme bacteria, along with

the disease-causing toxins they produce and then release into human body.

Without such a test, the medical debate over whether or not Lyme can be

quickly cured has surged in recent years, provoking frequent battles in which

physicians have attacked each other's credibility and integrity (and in a few

cases, even their medical licenses).

All too often, suffering patients have been left in the middle, essentially

ignored by doctors who contend that their long-term symptoms aren't the

result of Chronic Lyme, but of " fibromyalgia, " " depression, " or " irritable

bowel syndrome. " These more familiar disorders allow the doctor to make a

speedier diagnosis of an ailment for which there will be no " positive " lab

test, either. In this way, patients can be quickly " helped out the door " -

after the doc scribbles a prescription for an anti-depressant, or maybe an

acid-blocker.

Already struggling with the debilitating symptoms of their tick-borne

disease, Chronic Lyme sufferers are patronized with insulting regularity by

physicians who don't understand the biochemistry involved in chronic,

neurotoxin-mediated illnesses, of which CLD is only one. As a result, these

frustrated patients often wind up bouncing from physician to naturopath to

herbalist to acupuncturist, among other " non-traditional healers. " Along the

way, they frequently spend tens of thousands of dollars on useless treatments.

But that situation is about to change, as more and more Family Practice

physicians like me find ourselves treating Chronic Lyme in patients who tell

us about their " years of brutal headaches and aching joints, " while also

describing themselves as " desperate to find a cure. "

Why have so many medical researchers failed to understand the chronic aspect

of Lyme disease?

In many cases, the problem has been that they simply don't understand the

dynamics involved in the movement of organic neurotoxins throughout the human

body.

Like the microorganisms that produce other toxin-linked diseases - such as

the dinoflagellates ciguatera and Pfiesteria, and the fungi that cause Sick

Building Syndrome - Borrelia bacteria manufacture a nasty suite of

neurotoxins which circulate in human fatty tissues, such as those found in

nerve, muscle, brain, lung and bile, rather than in the bloodstream (as

happens with more common illnesses such as pneumonia).

Because these bacterial poisons are moving through the body's fat storage

system and bile, they cannot be reached by the " antibodies " that search out

and destroy invading microorganisms in the bloodstream. Instead, they

continue to travel throughout the tissues for years at a time, triggering

such classic symptoms of Lyme Disease as fatigue, headaches, shortness of

breath, joint aches and short-term memory impairment.

Frequently found today in the backyards or playgrounds of America's

fast-spreading suburbs, the deer and Lone Star ticks that spread Lyme disease

(named for the Connecticut town where it was discovered a few decades ago),

take in the disease-causing Borrelia while ingesting the blood of deer or

mice. When they later bite humans, the bacteria move from the mid-gut of the

arachnid - now found commonly in all 50 states - into their human host.

Within a matter of days, these spirochetes begin producing the brain-damaging

neurotoxins that cause the blurred vision and the muscle fatigue so commonly

seen in cases of Chronic Lyme.

While treating hundreds of Chronic Lyme patients in my land-based Family

Practice in recent years, I was fortunate to come upon an already existing

but little noticed physiologic test of optic nerve function - the " Visual

Contrast Sensitivity " test, or VCS - that can tell a physician in five

minutes whether or not the patient is suffering from the harmful effects of

neurotoxins on the brain's ability to distinguish contrast between black,

white and gray. The optic nerve deficit mirrors the adverse effect of

neurotoxins throughout the body.

The good news for Lyme patients everywhere is that VCS now gives the

physician a reproducibly reliable, inexpensive and non-invasive test (it

takes only five minutes) that makes a virtually foolproof diagnosis of

Chronic Lyme readily available.

Once the VCS test pinpoints the diagnosis, CLD can be effectively treated

with a toxin-binding drug ( " cholestyramine, " or CSM) that filters the

offending neurotoxins out of bile in the lower intestine. It was my good

fortune to be able to demonstrate as much, while presenting the first

scientific paper in the world's medical literature on " Treatment of Chronic

Lyme Disease Using VCS and Toxin-Binding Therapy " last April at a meeting of

the American Society for Microbiology. In that paper, I showed that VCS was a

better test for confirming the presence of Lyme neurotoxins than any blood,

urine or DNA test for the organism, itself.

Moreover, the VCS Test showed improvement with treatment as symptoms abated.

A follow up study, ongoing at Family Practice sites in 16 states and four

foreign countries, has shown a 92-percent improvement rate in more than 400

patients with CLD. Their case histories prove conclusively that Chronic Lyme

can be diagnosed effectively with VCS - and that it can be treated

effectively with drug therapy, provided that it takes place under the

rigorous supervision of a clinical physician expert in management of CSM

therapy.

Patients should never take this drug on their own, because it can trigger

intensification of symptoms in the absence of pre-treatment by a physician.

As this summer's tick-and-Chronic-Lyme season begins in earnest, it's

important to remember that you can catch this highly infectious and

debilitating disease right in your own backyard. It's also important to

understand that you can't prevent tick bites by " rolling up your pant legs "

or applying a standard insect repellant, which has no effect on arachnids

such as ticks. (The blunt fact is that the usual public health

recommendations for preventing tick bites simply don't work.)

Remember, also, that more than 30 percent of Lyme patients never even

realized they'd been bitten by a tick - since many bites from these tiny

parasites go unnoticed.

If you do get sick (and many people will, as the epidemic continues to

spread), ask your physician about using the VCS Test as a diagnostic tool. If

the doctor doesn't know about it yet, you can get help at the new Family

Practice website on Chronic Lyme (www.chronicneurotoxins.com).

These days, the good news for Chronic Lyme sufferers is that the list of

physicians who understand the links between long-term illness and neurotoxins

is growing rapidly. You can find a doctor to help you at the website. Why

suffer needlessly from the painful symptoms of this debilitating disease?

Instead, why not take the step of obtaining an inexpensive, five-minute

diagnostic test? Then go get the toxin-binding therapy you'll need, in order

to resume a healthy and productive life.

 

Dr. Ritchie Shoemaker is a Family Practice Physician in Pocomoke, land.

The author of Pfiesteria: Crossing Dark Water (Gateway Press, 1998), a book

about the discovery of chronic, neurotoxin-linked illnesses, Dr. Shoemaker

was named Family Practice Physician of the Year 2000 by the land Academy

of Family Physicians.

sue in nj

[Guest guest]

Ari,

Just received an e-mail newsletter from The Psoriasis Foundation that

indicated:

" The NPF has embarked upon a public awareness campaign about

psoriatic arthritis, in conjunction with the release of Enbrel and the

completion of the first stage of the NPF's nationwide survey. This part of

the survey has revealed that a significantly higher number of people have

psoriatic arthritis -- about 1 million -- than previously reported. Media

coverage has already appeared in the Washington Post, the Wall Street

Journal, Dow News Service, the Seattle Times, the Seattle

Post-Intelligence and more. "

For more information they suggest we go to ww.psoriasis.org/g300.htm which

I haven't gotten to yet. Of course this figure is for the USA

only--previously published number I was aware of was 500,000 sufferers in

USA.

When I went to Australia Rhuematology website recently (referred to by

fellow PA'er on this site) they estimated number in Australia to be 1

million also--wonder how per capita compares to here in USA?

Ari, your determination and will to live a fulfilling life always shows

through in your messages and always inspire me to muster a little extra

determination myself. There are many others of you, especially recently,

who are so encouraging both in the attitude you display towards the disease

and your willingless to share your own experiences. I, personally, have

been helped so much both by all the information each of you share and your

differing creative approaches to making a life for yourselves in spite of

PA. I still check for new postings twice every day and flag many to re-read

again!

My medication status is on hold at present--wasn't able to continue taking

MTX due to serious side effects (taking Arava,Vioxx and Prednisone at

present) and now will need a neurological evaluation in April before

proceeding to Enbrel because results of MRI several years ago indicated that

lesions in brain were seen similar to those seen in multiple scleriosis--so

we'll see. Take care all, Hatchett

[Guest guest]

You have a lyme group in Ohio. We in Michigan can help as well.

Bev

Lyme for 5 years.

Former Cancer survivior

[Guest guest]

Tina,

Have your CA Dr call your hospital lab? You can have it done there if she calls

an order in. Don't think it matters if they are out of state, but not sure.

[ ] Question

Hi again,

Thank all of your for your helpful advice in my other questions.

I mostly lurke to learn & you all are most helpful.

My family doctor won't believe I have lyme disease as he say's there's

no lyme disease in Ohio.

I have had it for 1 year possibly 2 & my husband much longer. I have

had the rash twice & we both have had symptoms for the past 2 years &

really bad the past year. I have had for a long, long time Mitral Valve

Prolapse, inherited it from my mother which she inherited &

unfortunately my daughter too has it. The only thing my family doctor

wants to do is send me to a cardiologist. I've been there, done that &

really want him to test me for lyme disease so I can show him I & my

husband have it & go from there. He is a good doctor other than this

behavior about lyme. I have a friend in CA that is an MD & she says if

there's a way she can request the test done she will.

Here is my question:

Where in Ohio or nearby [even a few states away] would I be able to get

the tests performed?

Any help is appreciated.

I have contacted MDL in New Jersey to see if I go directly to them if

they will take the tests but have had no answer as of yet.

Thanks,

Tina Allman [TJ]

fcf@...

or

fcf_1993@...

[Guest guest]

I am not sure but I think you can contact Igenex Labs

in California for the blood tests. It will probably

require a doctors order but maybe you can have your

Californis Friend Doctor order it for you.

I think Igenex sends you what is ordered, then you

have it drawn at a local lab and then it is sent to

Igenex.

I remember reading something about this in a previos

post. You may want to search the archives. You can

go to the Igenex website here.

http://igenex.com

Good luck to you and your family,

Darcie in California

--- horselady <fcf@...> wrote:

> Hi again,

> Thank all of your for your helpful advice in my

> other questions.

> I mostly lurke to learn & you all are most helpful.

> My family doctor won't believe I have lyme disease

> as he say's there's

> no lyme disease in Ohio.

> I have had it for 1 year possibly 2 & my husband

> much longer. I have

> had the rash twice & we both have had symptoms for

> the past 2 years &

> really bad the past year. I have had for a long,

> long time Mitral Valve

> Prolapse, inherited it from my mother which she

> inherited &

> unfortunately my daughter too has it. The only

> thing my family doctor

> wants to do is send me to a cardiologist. I've been

> there, done that &

> really want him to test me for lyme disease so I can

> show him I & my

> husband have it & go from there. He is a good

> doctor other than this

> behavior about lyme. I have a friend in CA that is

> an MD & she says if

> there's a way she can request the test done she

> will.

> Here is my question:

> Where in Ohio or nearby [even a few states away]

> would I be able to get

> the tests performed?

> Any help is appreciated.

> I have contacted MDL in New Jersey to see if I go

> directly to them if

> they will take the tests but have had no answer as

> of yet.

> Thanks,

> Tina Allman [TJ]

> fcf@...

> or

> fcf_1993@...

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

YOu can get the kit for the lab tests from Igenex (www.igenex.com) Then have a

laab draw the blood and send it back to Igenex FedEx. They will send the

results to your MD. You do not have to have an order to do this, but the

results do have to be sent to a dr. At least this is what I did about a year

ago.

[Guest guest]

Hi again,

I would like to express my thanks & appreciation for all the emails via

list & privately. My husband and I are working on all information

provided.

I thank all of you that helped out.

Much appreciation,

Tina [TJ] Allman

>Message: 1

Date: Wed, 27 Mar 2002 13:02:19 EST

From: jcn4jc@...

Subject: Question

There are many ways to find a Lyme doc in your area. Email Purdy

at

LPurdy1040@.... She's in Michigan....she should know of a doc in

your

area. You need to get a Lyme Literate doc asap. Also, you can order

tests

from IGenex and they send a kit directly to you for free. You take the

kit

to any drawing lab and ask them to draw your blood to the specifications

in

the kit. (you may have to pay a draw fee of $15-30). Take your blood

and

package it according to the directions on the package (also part of the

kit).

You'll have to pay for which tests you want done with either check or

credit

card (or medicare). FedEx it 2nd day air (also part of the

kit----postage

pre-paid by IGenex). I had to get it done before 1200 noon, as thats

when

Fed Ex picks up at the Mailboxes Etc. in my town.

IGenex' Dr. can tell you when the best time to collect your

specimen

is. (I did mine after being on doxy for a week, plus within the first 3

days

of my period). You'll need your Lyme Literate doc to read the tests to

help

you understand what they mean. Hope this helps.

God bless, Colleen

>

> Message: 7

> Date: Mon, 25 Mar 2002 08:04:20 -0800

> From: horselady <fcf@...>

> Subject: Question

>

> Hi again,

> Thank all of your for your helpful advice in my other questions.

> I mostly lurke to learn & you all are most helpful.

> My family doctor won't believe I have lyme disease as he say's there's

> no lyme disease in Ohio.

> I have had it for 1 year possibly 2 & my husband much longer. I have

> had the rash twice & we both have had symptoms for the past 2 years &

> really bad the past year. I have had for a long, long time Mitral

Valve

> Prolapse, inherited it from my mother which she inherited &

> unfortunately my daughter too has it. The only thing my family doctor

> wants to do is send me to a cardiologist. I've been there, done that

&

> really want him to test me for lyme disease so I can show him I & my

> husband have it & go from there. He is a good doctor other than this

> behavior about lyme. I have a friend in CA that is an MD & she says

if

> there's a way she can request the test done she will.

> Here is my question:

> Where in Ohio or nearby [even a few states away] would I be able to

get

> the tests performed?

> Any help is appreciated.

> I have contacted MDL in New Jersey to see if I go directly to them if

> they will take the tests but have had no answer as of yet.

> Thanks,

> Tina Allman [TJ]

> fcf@...

> or

> fcf_1993@...

>

[Guest guest]

Hi Debbie

It means can't remember sh*t

[ ] Question

> Good Morning to all and I have a question to whom ever

> wants to answer it! What does CRS mean? I have been

> hearing it but dont know what it means?Giglebut

>

> __________________________________________________

>

[Guest guest]

Can't remember stuff. (not in those EXACT words)

debbie henning <giglebutt2002@...> wrote: Good Morning to all and I have a question to whom everwants to answer it! What does CRS mean? I have beenhearing it but dont know what it means?Giglebut__________________________________________________

[Guest guest]

I might be misstaken, but I thank CRS is Can't remember sh-t.

Terry

debbie henning <giglebutt2002@...> wrote: Good Morning to all and I have a question to whom everwants to answer it! What does CRS mean? I have beenhearing it but dont know what it means?Giglebut__________________________________________________

[Guest guest]

>>> she gained another 3pounds.!!!!!!!!! she is now 140 cm and 22.8

kg. she has reached the 50LB park now!!! yeppieee....

Yeah!!!! She must be very small for her age.

>>> now that mika(son) is finding out how he can feel when he feels

good, he generally does not give trouble about the foods anymore.

and he notices quite well himself that he is not feeling well.

This is very good. He was the kid who " sneaked " before. One

advantage of older children is that they are aware of how much

better they feel with enzymes, and tend to be far more cooperative,

even reminding their parents and teachers.

>>> so today, he was showing some strange laughter, some lining up

of legos rather then building, he also was quite verbally agressive.

> BUt he came up and said " mom, dont know what happened to me, why i

said those things "

This is quite an accomplishment. Many grown-ups cannot do that!

>>>his symptoms seemed to come and go.he would get better and then

start to feel badly again.

Have you isolated out any problem foods? There may be one food in

particular that he still cannot eat even with enzymes. Enzymes may

bring the types of foods that upset your system into the " normal "

range. For example, it is very typical for someone with no chronic

digestive problems or other conditions to just say, " I don't eat

walnuts, they give me cankers. " or " I don't like pasta. It just

feels to heavy in my stomach. " or " I like pepperoni pizza, but it

doesn't agree with me. " So it is okay to have a food that still just

doesn't thrill you, or maybe you have a true allergy to. But this is

more reasonable than saying someone is allergic to " everything " or

reacts negatively to 83 different foods.

Yeast, I am learning, can flare-up or down IMMEDIATELY upon eating.

It may be he really needs to deal with his yeast problem in a

serious way. Even with using enzymes regularly, many times a child

will show " regression " when yeast jumps out of control. When the

yeast is tamed, then all the benefits " reappear " . Then enzymes are

still chugging along fine, but the yeast are spewing toxins anyway.

.

[Guest guest]

> >>> she gained another 3pounds.!!!!!!!!! she is now 140 cm and 22.8

> kg. she has reached the 50LB park now!!! yeppieee....

>

> Yeah!!!! She must be very small for her age.

yes. she is.. we just went and found her a bathing suit for this

summer. got a size 7. she is in the 50th percentile in height, but

in the weight she had fallen right off the scale, but now is around

the 5th percentile range. a little higher.

still very thin but even the doctor noticed that when he saw her,

*just looking at her face* " youve gained some weight this time " .

so this time the gain was noticeable. FINALLY!! after 4 yrs of not

gaining 1 pound, but gaining height.

> >>> now that mika(son) is finding out how he can feel when he feels

> good, he generally does not give trouble about the foods anymore.

> and he notices quite well himself that he is not feeling well.

>

> This is very good. He was the kid who " sneaked " before. One

> advantage of older children is that they are aware of how much

> better they feel with enzymes, and tend to be far more cooperative,

> even reminding their parents and teachers.

Yes. he was the " sneaky " one. he does not do it anymore that am

noticing. and if he does. it sure is not enough to cause him any

reactions, so am believing him that he is not sneaking anymore.

> >>> so today, he was showing some strange laughter, some lining up

> of legos rather then building, he also was quite verbally agressive.

> > BUt he came up and said " mom, dont know what happened to me, why

i

> said those things "

>

> This is quite an accomplishment. Many grown-ups cannot do that!

yes. am trying hard to help the children understand that everyone

sometimes makes mistakes, says things that are not right, (good

example of mine own self here) but when we do these things, it is

important then when we notice that, to try to look at what happened

and try to make it better.

when he feels better now, he has been accomplishing this so well. am

so proud of him. daughter has much more difficulty with this. she

will look right at what she is doing and say " no am not " . lol

but that is what mika did at age 9 also. )

> >>>his symptoms seemed to come and go.he would get better and then

> start to feel badly again.

this was all in one day. from the one problem food he had in town,

he had nachos with some zesty flavourings. if he has plain tacos now,

he can tolerate it well with enzymes, but the ones with the strong

flavours (zesty nachos think it was ) this is what it was.

> Have you isolated out any problem foods?

some yes. alwqays knew about milk being a problem food. and am

seeing that the hotdogs, are a big no-no. also nachos, and still food

colourings of any sort. also, orange juice, (which he still craves)

along with grapes, and tomatoes, (but he hates tomatoes anyways).

but there are other foods that are doing things we just cant figure

out which is doing it, he gets very itchy skin, and little rash which

michelle is getting also, and doctor noticed that yesterday and said

it was exzema. personally also got a spot of what had always seen as

exzema before all of a sudden after the weekend, but dont know why.

ate fish, but have eaten fish before. but didnt eat this type of fish

but could that be it? thought that fish was fish, no matter which

species one eats.

There may be one food in

> particular that he still cannot eat even with enzymes.

yes the nachos was the problem yesterday. what am not understanding

is why the negative reaction would start, continue for a while,and

then he woudl settle right back to " normal " and then after a while

(like an hour or so) the reaction woudl start again. like a fever

going up anddown. is that wierd? or is it that have never noticed

that before and it is common.

> Yeast, I am learning, can flare-up or down IMMEDIATELY upon eating.

> It may be he really needs to deal with his yeast problem in a

> serious way.

makes sense. think that is propably a part of his problem. will try

to look further into it when summer holidays start and is easier for

monitoring exactly what he is eating and what he isnt eating.

minna