Re: CFS/Lyme

[Guest guest]

Hello Ballady, Yes, I was diagnosed for almost 30 years with CFS and 2 years

ago tested positive for lyme and coinfections. I'm including a excerpt from an

article just recently published. The entire article is in the Los Altos paper.

Adrienne this may explain more about your burning feet. I'm being treated for

it but so far getting nowhere and am now down to HBOT only.

Both have undergone a regimen of powerful antibiotics and drugs, both have

tallied immense medical bills. Both contracted the same coinfection, Babesiosis

- a common occurrence because ticks transmit numerous other bacteria along with

Lyme. The women continue to have neurological disorders and neuropathy -

Schaffner experiences memory problems, Ellen suffers painful, burning legs and

feet.

Schaffner and Ellen are fighting back. Ellen, whose fatigue had prevented her

from holding even part-time work, aims to resume work slowly, dividing her

energy between freelance writing and personal fitness coaching. Schaffner, who

contracted the disease a second time when bitten by another tick, has become an

advocate for both her children and the Lyme disease community. Her daughter, who

contracted Lyme disease before enrolling in UC Santa Cruz, has published

articles in national journals in an effort to correct misunderstanding of the

illness.

Author Amy Tan freely shared her own experience with Lyme disease with a

Celebrity Forum audience in April 2004. Her story of infection and diagnosis

mirrors those above. Infected without realizing it, she associated the early

symptoms with her frequent airline travel. When her symptoms expanded into

seizures, memory loss, hallucinations and foot pain, like other sufferers, she

went to her doctor for a diagnosis.

Tan was " referred to specialist after specialist " and endured countless

laboratory tests with no specific diagnosis. These were well-known physicians,

recommended by her doctors in major urban centers - and they didn't know, she

said.

Tan finally matched her major symptoms with the description of Lyme disease on

the Internet and found the name of a Lyme disease specialist. Within two weeks,

she tested positive for Lyme on the Western blot, which confirmed that doctor's

diagnosis. Because Tan, like Schaffner, Ellen and Theresa, received a late start

on treatment, it took a while for her symptoms to lessen.

She has become an advocate for awareness and early diagnosis. Tan pointed out

that she is able to pay for the expensive treatment but that many insurance

carriers refuse to cover the ongoing care.

Lyme disease specialists have had to take up arms as well - not just for their

patients' sake, but also for their own.

" The medical community has gone after physicians who treat chronic Lyme

disease, " said Stricker. Because of the controversy regarding long-term

treatment, the few doctors who offer it have been threatened with prosecution

and license revocation by national organizations that disagree with their

treatments.

In February 2005, the California Assembly sought to protect such doctors by

passing an act to amend Section 2234.1 of the Business and Professions Code,

making it unlawful for professional organizations to discipline physicians who

aggressively treat long-term cases of Lyme disease. The bill later became law.

" We need more legislation like this in other parts of the country, " said

Stricker.

For more information, visit the International Lyme and Associated Disease

Society at www.ilads.org or the Centers for Disease Control and Prevention at

www.cdc.gov.

The Mountain View Lyme Support Group meets 6-8 p.m. the second Tuesday of each

month in Room D, El Camino Hospital, 2500 Grant Road. The next meeting is

scheduled July 11.

ballady4 <ballady4@...> wrote:

A growing number of people think that CFS is a symptom of something

else; more specifically, Lyme Disease. Many people who think they have

(or have been diagnosed with) CFS are either testing positive for Lyme

or are being given that diagnosis through clinical symptomology (so

one can have Lyme even with negative or indeterminate test results.)

I was diagnosed with CFS 14 years ago but last year tested positive

for Lyme at a Lyme reputable lab. My symptoms have not changed so it

is now thought that I have actually had Lyme all these years. I still

have all the CFS type symtpoms but now see that these relate to Lyme

as well.

So I wonder if any of you have been tested for Lyme or have explored

this possibility.

Ballady

[Guest guest]

Edy Rayfield <edyrayfield@...> wrote:

>

> Hello Ballady, Yes, I was diagnosed for almost 30 years with CFS

and 2 years ago tested positive for lyme and coinfections. <

" CFS " didn't exist until 1988 when the CDC invented that wondrous

little term. What name did the doctors use for your illness before

then?

I'm collecting old names that doctors used.

I've heard a number of really good ones, but my favorite is from a

gal I met in 1980 who was diagnosed with " Doctor Seeking Behavior " .

The doctors said that this was a mental disorder of those who

seek " approval " from authority figures, and work endlessly to

vindicate their imgaginary complaints, and seek out " sympathetic "

doctors to fulfil their illness fantasy of validation.

This doctor said that " Unfortunately, these patients are so

determined and convincing that some doctors fall into the trap of

believing them " and felt that weakminded doctors who listened too

much to their patients were the true source of mass hysteria and

unsubstantiated epidemics.

I personally suspect that I may have caught Lyme in 1976 when I had

an experience much like Lyme victims describe, but the troubling

complaints I had were not even remotely comparable to CFS until

the " Yuppie Flu " went through town.

With all this suspicion that Lyme is at the bottom of Alzheimers,

MS and a number of other illnesses, saying that Lyme is CFS sounds

incompatible with the facts to someone with severe ME/CFS who looks

at all those Lyme sufferers who symptoms don't even remotely

resemble that type of illness. Something must explain the

difference.

One would think that we had finally arrived at a level of

technology in which Lyme as a possible common denominator could be

unequivocally established, or finally ruled out by a few

exclusionary cases of ME/CFS - just as AIDS was demonstrated in a

few cases of non HIV individuals who had mycoplasma fermentans

incognitus.

-

[Guest guest]

Hi Edy,

SO sorry about your suffering with lyme.

I have suffered with fibro/cfs for seventeen years but

had an empirical lyme diagnosis about five years back

(mycoplasmas before that). I went through five years

of antibiotic therapy and only got worse

unfortunately.

In my instance, I developed peripheral neuropathy when

I was on certain antibiotics-or certain supplements.

Though I do realize that neuropathy is part of lyme

disease organically-on its' own- I just wanted to put

the message out there that sometimes neuropathy in the

feet-and burning feet can come from a medicine or

supplement.

In my case (and it is listed on meds side

effects)-flagyl induced a horrible case of burning

feet and peripheral neuropathy in toes to the point of

not being able to sleep at night. At the time, I

didn't know it was the flagyl.

Another doc gave me a prescription for neurontin. The

neurontin knocked the peripheral neuropathy out in two

days. I only took it for a few weeks-got off of the

flagyl and the neuropathy was gone for a few years.

However, when I tried Immunopro at different times it

would always cause neuropathy in me. I always wondered

if this was because there might have been contaminates

in it.

Also, I developed sinus disease-the allergic to mold

kind-I developed polyps that were blocking my sinuses

due to an allergic reaction to mold (the polyps

themselves were not made of mold).

I was told I needed surgery but we didn't have

insurance and couldn't afford it at the time-so, I

self treated with prednisone because it was the only

thing that got me to breath and to get some sleep.

Well, I had peripheral neuropathy every night from the

prednisone. Once I had the surgery and am now finally

getting off of prednisone-I haven't had any

neuropathy.

Anyhow, I hope this wasn't too off topic. I realize

you were going more in depth about lyme and the

problems of trying to be diagnosed-and people's

efforts and experiences.

I just wanted to put out my experience of some of the

other things that can cause neuropathy in case it may

help anyone on the list. (Also, levaquin also induced

neuropathy in me.)

Take care,

Gena

--- Edy Rayfield <edyrayfield@...> wrote:

> Hello Ballady, Yes, I was diagnosed for almost 30

> years with CFS and 2 years ago tested positive for

> lyme and coinfections. I'm including a excerpt from

> an article just recently published. The entire

> article is in the Los Altos paper. Adrienne this

> may explain more about your burning feet. I'm being

> treated for it but so far getting nowhere and am now

> down to HBOT only.

>

> Both have undergone a regimen of powerful

> antibiotics and drugs, both have tallied immense

> medical bills. Both contracted the same coinfection,

> Babesiosis - a common occurrence because ticks

> transmit numerous other bacteria along with Lyme.

> The women continue to have neurological disorders

> and neuropathy - Schaffner experiences memory

> problems, Ellen suffers painful, burning legs and

> feet.

> Schaffner and Ellen are fighting back. Ellen,

> whose fatigue had prevented her from holding even

> part-time work, aims to resume work slowly, dividing

> her energy between freelance writing and personal

> fitness coaching. Schaffner, who contracted the

> disease a second time when bitten by another tick,

> has become an advocate for both her children and the

> Lyme disease community. Her daughter, who contracted

> Lyme disease before enrolling in UC Santa Cruz, has

> published articles in national journals in an effort

> to correct misunderstanding of the illness.

> Author Amy Tan freely shared her own experience

> with Lyme disease with a Celebrity Forum audience in

> April 2004. Her story of infection and diagnosis

> mirrors those above. Infected without realizing it,

> she associated the early symptoms with her frequent

> airline travel. When her symptoms expanded into

> seizures, memory loss, hallucinations and foot pain,

> like other sufferers, she went to her doctor for a

> diagnosis.

> Tan was " referred to specialist after specialist "

> and endured countless laboratory tests with no

> specific diagnosis. These were well-known

> physicians, recommended by her doctors in major

> urban centers - and they didn't know, she said.

> Tan finally matched her major symptoms with the

> description of Lyme disease on the Internet and

> found the name of a Lyme disease specialist. Within

> two weeks, she tested positive for Lyme on the

> Western blot, which confirmed that doctor's

> diagnosis. Because Tan, like Schaffner, Ellen and

> Theresa, received a late start on treatment, it took

> a while for her symptoms to lessen.

> She has become an advocate for awareness and early

> diagnosis. Tan pointed out that she is able to pay

> for the expensive treatment but that many insurance

> carriers refuse to cover the ongoing care.

> Lyme disease specialists have had to take up arms

> as well - not just for their patients' sake, but

> also for their own.

> " The medical community has gone after physicians

> who treat chronic Lyme disease, " said Stricker.

> Because of the controversy regarding long-term

> treatment, the few doctors who offer it have been

> threatened with prosecution and license revocation

> by national organizations that disagree with their

> treatments.

> In February 2005, the California Assembly sought

> to protect such doctors by passing an act to amend

> Section 2234.1 of the Business and Professions Code,

> making it unlawful for professional organizations to

> discipline physicians who aggressively treat

> long-term cases of Lyme disease. The bill later

> became law.

> " We need more legislation like this in other parts

> of the country, " said Stricker.

> For more information, visit the International Lyme

> and Associated Disease Society at www.ilads.org or

> the Centers for Disease Control and Prevention at

> www.cdc.gov.

> The Mountain View Lyme Support Group meets 6-8

> p.m. the second Tuesday of each month in Room D, El

> Camino Hospital, 2500 Grant Road. The next meeting

> is scheduled July 11.

>

>

> ballady4 <ballady4@...> wrote:

> A growing number of people think that CFS

> is a symptom of something

> else; more specifically, Lyme Disease. Many people

> who think they have

> (or have been diagnosed with) CFS are either testing

> positive for Lyme

> or are being given that diagnosis through clinical

> symptomology (so

> one can have Lyme even with negative or

> indeterminate test results.)

>

> I was diagnosed with CFS 14 years ago but last year

> tested positive

> for Lyme at a Lyme reputable lab. My symptoms have

> not changed so it

> is now thought that I have actually had Lyme all

> these years. I still

> have all the CFS type symtpoms but now see that

> these relate to Lyme

> as well.

> So I wonder if any of you have been tested for Lyme

> or have explored

> this possibility.

>

> Ballady

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi ,

I was a bit taken aback by your statement below:

> With all this suspicion that Lyme is at the bottom of Alzheimers,

> MS and a number of other illnesses, saying that Lyme is CFS sounds

> incompatible with the facts to someone with severe ME/CFS who looks

> at all those Lyme sufferers who symptoms don't even remotely

> resemble that type of illness. Something must explain the

> difference.

> -

>

From what I understand, I think what is being suggested is that CFS is

a " symptom " of Lyme. But are you saying those with Lyme don't have as

severe symptoms as those who have been diagnosed with CFS? And/or are

you saying that the symptomology for Lyme and CFS are vastly

different? You might want to visit some Lyme boards to learn of the

devasting symptoms that are being reported by most " lymies " but you

would also hear how VERY similar those symtoms are to what is being

labeled CFS. I have tested positive for Lyme. I also, supposedly, have

had CFS for 14 years. After extensive research, I really see little

difference except that one is " supposedly " due to a virus and the

other a spirochete.

I only bring up this question CFS/Lyme because I think the

similarities in symptoms or the underlying relationship has not been

adequately explored. I'm still exploring it myself.

Ballady

[Guest guest]

Hi Ballady, I'm with you 100% on this one. Having been called a PWC for so

many decades and then finding out about Lyme, testing very! positive on a

Western Blot twice and camparing the symptom list, well it seems fairly obvious

the gray and overlapping areas. Not to disregard anything relating to CFS.

It's a little like the chicken and the egg. Which causes which. Which came

first. I know for me I was extremely healthy and strong and then WHAM! out of

the blue I collapsed. I ate all organic food, grew my own garden, had goats and

chickens, lived in a clean environment. From what I've read about Lyme the

disruption of every system cascades into what looks suspiciously like CFS. We

need answers and that's why we all keep peacefully sharing what we think because

I think that's what it comes down to. We all live with this and know better

than anyone what feels intuitively like an answer or not.....and what it feels

like to be wondering just what the heck happened

to us? Warmest Regards, Edy

ballady4 <ballady4@...> wrote:

Hi ,

I was a bit taken aback by your statement below:

> With all this suspicion that Lyme is at the bottom of Alzheimers,

> MS and a number of other illnesses, saying that Lyme is CFS sounds

> incompatible with the facts to someone with severe ME/CFS who looks

> at all those Lyme sufferers who symptoms don't even remotely

> resemble that type of illness. Something must explain the

> difference.

> -

>

From what I understand, I think what is being suggested is that CFS is

a " symptom " of Lyme. But are you saying those with Lyme don't have as

severe symptoms as those who have been diagnosed with CFS? And/or are

you saying that the symptomology for Lyme and CFS are vastly

different? You might want to visit some Lyme boards to learn of the

devasting symptoms that are being reported by most " lymies " but you

would also hear how VERY similar those symtoms are to what is being

labeled CFS. I have tested positive for Lyme. I also, supposedly, have

had CFS for 14 years. After extensive research, I really see little

difference except that one is " supposedly " due to a virus and the

other a spirochete.

I only bring up this question CFS/Lyme because I think the

similarities in symptoms or the underlying relationship has not been

adequately explored. I'm still exploring it myself.

Ballady

[Guest guest]

HI Gena

And you, too. The women in the article are people I know and they are

recovering on Strickers protocol, but they've only had the disease for a few

years I believe. It's very difficult to lose ones energy and still try so hard

to find answers and more important something that will help. Again and again we

hear we are the pioneers, the canaries. Well, I think this is probably true

and in another ten years or so the medical community and that means alternative

as well, will have a much better handle on this. Too bad we had to be the ones

at the front of the line! I'm donating my body to research so answers can be

found quickly. Hopefully all of our suffering won't have been in vain. Off

topic, but pertinent I think. Bless you all, Edy

Gena Castanon <gcastanon68@...> wrote:

Hi Edy,

SO sorry about your suffering with lyme.

I have suffered with fibro/cfs for seventeen years but

had an empirical lyme diagnosis about five years back

(mycoplasmas before that). I went through five years

of antibiotic therapy and only got worse

unfortunately.

In my instance, I developed peripheral neuropathy when

I was on certain antibiotics-or certain supplements.

Though I do realize that neuropathy is part of lyme

disease organically-on its' own- I just wanted to put

the message out there that sometimes neuropathy in the

feet-and burning feet can come from a medicine or

supplement.

In my case (and it is listed on meds side

effects)-flagyl induced a horrible case of burning

feet and peripheral neuropathy in toes to the point of

not being able to sleep at night. At the time, I

didn't know it was the flagyl.

Another doc gave me a prescription for neurontin. The

neurontin knocked the peripheral neuropathy out in two

days. I only took it for a few weeks-got off of the

flagyl and the neuropathy was gone for a few years.

However, when I tried Immunopro at different times it

would always cause neuropathy in me. I always wondered

if this was because there might have been contaminates

in it.

Also, I developed sinus disease-the allergic to mold

kind-I developed polyps that were blocking my sinuses

due to an allergic reaction to mold (the polyps

themselves were not made of mold).

I was told I needed surgery but we didn't have

insurance and couldn't afford it at the time-so, I

self treated with prednisone because it was the only

thing that got me to breath and to get some sleep.

Well, I had peripheral neuropathy every night from the

prednisone. Once I had the surgery and am now finally

getting off of prednisone-I haven't had any

neuropathy.

Anyhow, I hope this wasn't too off topic. I realize

you were going more in depth about lyme and the

problems of trying to be diagnosed-and people's

efforts and experiences.

I just wanted to put out my experience of some of the

other things that can cause neuropathy in case it may

help anyone on the list. (Also, levaquin also induced

neuropathy in me.)

Take care,

Gena

--- Edy Rayfield <edyrayfield@...> wrote:

> Hello Ballady, Yes, I was diagnosed for almost 30

> years with CFS and 2 years ago tested positive for

> lyme and coinfections. I'm including a excerpt from

> an article just recently published. The entire

> article is in the Los Altos paper. Adrienne this

> may explain more about your burning feet. I'm being

> treated for it but so far getting nowhere and am now

> down to HBOT only.

>

> Both have undergone a regimen of powerful

> antibiotics and drugs, both have tallied immense

> medical bills. Both contracted the same coinfection,

> Babesiosis - a common occurrence because ticks

> transmit numerous other bacteria along with Lyme.

> The women continue to have neurological disorders

> and neuropathy - Schaffner experiences memory

> problems, Ellen suffers painful, burning legs and

> feet.

> Schaffner and Ellen are fighting back. Ellen,

> whose fatigue had prevented her from holding even

> part-time work, aims to resume work slowly, dividing

> her energy between freelance writing and personal

> fitness coaching. Schaffner, who contracted the

> disease a second time when bitten by another tick,

> has become an advocate for both her children and the

> Lyme disease community. Her daughter, who contracted

> Lyme disease before enrolling in UC Santa Cruz, has

> published articles in national journals in an effort

> to correct misunderstanding of the illness.

> Author Amy Tan freely shared her own experience

> with Lyme disease with a Celebrity Forum audience in

> April 2004. Her story of infection and diagnosis

> mirrors those above. Infected without realizing it,

> she associated the early symptoms with her frequent

> airline travel. When her symptoms expanded into

> seizures, memory loss, hallucinations and foot pain,

> like other sufferers, she went to her doctor for a

> diagnosis.

> Tan was " referred to specialist after specialist "

> and endured countless laboratory tests with no

> specific diagnosis. These were well-known

> physicians, recommended by her doctors in major

> urban centers - and they didn't know, she said.

> Tan finally matched her major symptoms with the

> description of Lyme disease on the Internet and

> found the name of a Lyme disease specialist. Within

> two weeks, she tested positive for Lyme on the

> Western blot, which confirmed that doctor's

> diagnosis. Because Tan, like Schaffner, Ellen and

> Theresa, received a late start on treatment, it took

> a while for her symptoms to lessen.

> She has become an advocate for awareness and early

> diagnosis. Tan pointed out that she is able to pay

> for the expensive treatment but that many insurance

> carriers refuse to cover the ongoing care.

> Lyme disease specialists have had to take up arms

> as well - not just for their patients' sake, but

> also for their own.

> " The medical community has gone after physicians

> who treat chronic Lyme disease, " said Stricker.

> Because of the controversy regarding long-term

> treatment, the few doctors who offer it have been

> threatened with prosecution and license revocation

> by national organizations that disagree with their

> treatments.

> In February 2005, the California Assembly sought

> to protect such doctors by passing an act to amend

> Section 2234.1 of the Business and Professions Code,

> making it unlawful for professional organizations to

> discipline physicians who aggressively treat

> long-term cases of Lyme disease. The bill later

> became law.

> " We need more legislation like this in other parts

> of the country, " said Stricker.

> For more information, visit the International Lyme

> and Associated Disease Society at www.ilads.org or

> the Centers for Disease Control and Prevention at

> www.cdc.gov.

> The Mountain View Lyme Support Group meets 6-8

> p.m. the second Tuesday of each month in Room D, El

> Camino Hospital, 2500 Grant Road. The next meeting

> is scheduled July 11.

>

>

> ballady4 <ballady4@...> wrote:

> A growing number of people think that CFS

> is a symptom of something

> else; more specifically, Lyme Disease. Many people

> who think they have

> (or have been diagnosed with) CFS are either testing

> positive for Lyme

> or are being given that diagnosis through clinical

> symptomology (so

> one can have Lyme even with negative or

> indeterminate test results.)

>

> I was diagnosed with CFS 14 years ago but last year

> tested positive

> for Lyme at a Lyme reputable lab. My symptoms have

> not changed so it

> is now thought that I have actually had Lyme all

> these years. I still

> have all the CFS type symtpoms but now see that

> these relate to Lyme

> as well.

> So I wonder if any of you have been tested for Lyme

> or have explored

> this possibility.

>

> Ballady

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

" ballady4 " <ballady4@...> wrote:

> Hi ,

> I was a bit taken aback by your statement below:

> > With all this suspicion that Lyme is at the bottom of

Alzheimers, MS and a number of other illnesses, saying that Lyme is

CFS sounds incompatible with the facts to someone with severe ME/CFS

who looks at all those Lyme sufferers who symptoms don't even

remotely resemble that type of illness. Something must explain the

difference. -<<

>

> From what I understand, I think what is being suggested is that

CFS is a " symptom " of Lyme. But are you saying those with Lyme don't

have as severe symptoms as those who have been diagnosed with CFS?

And/or are you saying that the symptomology for Lyme and CFS are

vastly different? You might want to visit some Lyme boards to learn

of the devasting symptoms that are being reported by most " lymies "

but you would also hear how VERY similar those symtoms are to what

is being labeled CFS. I have tested positive for Lyme. I also,

supposedly, have had CFS for 14 years. After extensive research, I

really see little difference except that one is " supposedly " due to

a virus and the other a spirochete.

I only bring up this question CFS/Lyme because I think the

similarities in symptoms or the underlying relationship has not been

adequately explored. I'm still exploring it myself.

> Ballady

>

MS and ALS are devastating, but they are devastating in a much

different way than CFS.

I know an LLMD who is finding spiros in all kinds of people who are

running the gamut of illness - some with no apparent signs of

illness at all - but they do not consistently have the precise

pattern seen in those who CFS was based upon.

So it's pretty obvious that whether or not Lyme can lead to CFS,

HAVING Lyme does not mean you have CFS.

If I had Lyme prior to the Yuppie Flu, then I can safely say that

those Lyme symptoms were nothing like CFS.

I could not have claimed to have anything like CFS prior the the

Yuppie Flu.

If Lyme can do all these various things because it is " the great

imposter " and can do anything and everything, then one needs to find

out why it DIDN " T manifest with such great dissimilarity in Incline,

and why Yuppie Flu survivors had an illness that had strikingly

similar symptoms not seen in known Lyme clusters such as the JRA

epidemic that caused Polly Murray to discover the epidemic in Lyme

Connecticut which gave the illness its name.

Meaning that if Lyme is a precursor to CFS, it needed the Yuppie

Flu to take us there.

-

[Guest guest]

Hi Edy and thanks for your thoughts on this. It is just because I feel

perplexed about the relationship CFS to Lyme and that no one I've

encountered, to date, seems to understand it either. I wonder if

everyone who has received the CFS diagnosis were to be tested (at a

reputable Lyme savy lab)how many would come out positive for Lyme,

which has reached epidemic-like proportions. In spite of this, it is

still dismissed by many in the " medical " community as an overblown or

possibly even non-existant problem. This is not only frustrating for

those of us who have Lymes, but curtails proper research into this

horrendous " ailment. "

Ballady

>

> Hi ,

>

> I was a bit taken aback by your statement below:

>

> > With all this suspicion that Lyme is at the bottom of Alzheimers,

> > MS and a number of other illnesses, saying that Lyme is CFS sounds

> > incompatible with the facts to someone with severe ME/CFS who looks

> > at all those Lyme sufferers who symptoms don't even remotely

> > resemble that type of illness. Something must explain the

> > difference.

>

> > -

> >

> From what I understand, I think what is being suggested is that CFS is

> a " symptom " of Lyme. But are you saying those with Lyme don't have as

> severe symptoms as those who have been diagnosed with CFS? And/or are

> you saying that the symptomology for Lyme and CFS are vastly

> different? You might want to visit some Lyme boards to learn of the

> devasting symptoms that are being reported by most " lymies " but you

> would also hear how VERY similar those symtoms are to what is being

> labeled CFS. I have tested positive for Lyme. I also, supposedly, have

> had CFS for 14 years. After extensive research, I really see little

> difference except that one is " supposedly " due to a virus and the

> other a spirochete.

>

> I only bring up this question CFS/Lyme because I think the

> similarities in symptoms or the underlying relationship has not been

> adequately explored. I'm still exploring it myself.

>

> Ballady

>

>

>

>

>

>

>

[Guest guest]

,

All I'm saying is that I have classical CFS symtpoms (and have had

them for the past 14 years, even receiving disability based on this

diagnosis.) I have been terribly ill with it, probably the same as

you. I also have classical Lymes symptoms and have tested " positive "

for it. My symptoms have not changed within the last 14 years, they

just fit into both categories.

My question is: are these (Lyme and CFS) in fact the same animal or do

I (and others) have both CFS and Lymes?

Ballady

>

> > Hi ,

> > I was a bit taken aback by your statement below:

>

> > > With all this suspicion that Lyme is at the bottom of

> Alzheimers, MS and a number of other illnesses, saying that Lyme is

> CFS sounds incompatible with the facts to someone with severe ME/CFS

> who looks at all those Lyme sufferers who symptoms don't even

> remotely resemble that type of illness. Something must explain the

> difference. -<<

>

> >

> > From what I understand, I think what is being suggested is that

> CFS is a " symptom " of Lyme. But are you saying those with Lyme don't

> have as severe symptoms as those who have been diagnosed with CFS?

> And/or are you saying that the symptomology for Lyme and CFS are

> vastly different? You might want to visit some Lyme boards to learn

> of the devasting symptoms that are being reported by most " lymies "

> but you would also hear how VERY similar those symtoms are to what

> is being labeled CFS. I have tested positive for Lyme. I also,

> supposedly, have had CFS for 14 years. After extensive research, I

> really see little difference except that one is " supposedly " due to

> a virus and the other a spirochete.

> I only bring up this question CFS/Lyme because I think the

> similarities in symptoms or the underlying relationship has not been

> adequately explored. I'm still exploring it myself.

> > Ballady

> >

>

> MS and ALS are devastating, but they are devastating in a much

> different way than CFS.

> I know an LLMD who is finding spiros in all kinds of people who are

> running the gamut of illness - some with no apparent signs of

> illness at all - but they do not consistently have the precise

> pattern seen in those who CFS was based upon.

> So it's pretty obvious that whether or not Lyme can lead to CFS,

> HAVING Lyme does not mean you have CFS.

> If I had Lyme prior to the Yuppie Flu, then I can safely say that

> those Lyme symptoms were nothing like CFS.

> I could not have claimed to have anything like CFS prior the the

> Yuppie Flu.

> If Lyme can do all these various things because it is " the great

> imposter " and can do anything and everything, then one needs to find

> out why it DIDN " T manifest with such great dissimilarity in Incline,

> and why Yuppie Flu survivors had an illness that had strikingly

> similar symptoms not seen in known Lyme clusters such as the JRA

> epidemic that caused Polly Murray to discover the epidemic in Lyme

> Connecticut which gave the illness its name.

> Meaning that if Lyme is a precursor to CFS, it needed the Yuppie

> Flu to take us there.

> -

>

[Guest guest]

HI Gena,

Now I am wondering if the Dyflucan (Fluconazole) for 20 days for a yeast

infection caused the neuropathy in my feet?????

Janet

in San Diego

Gena Castanon <gcastanon68@...> wrote:

Hi Edy,

SO sorry about your suffering with lyme.

I have suffered with fibro/cfs for seventeen years but

had an empirical lyme diagnosis about five years back

(mycoplasmas before that). I went through five years

of antibiotic therapy and only got worse

unfortunately.

In my instance, I developed peripheral neuropathy when

I was on certain antibiotics-or certain supplements.

Though I do realize that neuropathy is part of lyme

disease organically-on its' own- I just wanted to put

the message out there that sometimes neuropathy in the

feet-and burning feet can come from a medicine or

supplement.

In my case (and it is listed on meds side

effects)-flagyl induced a horrible case of burning

feet and peripheral neuropathy in toes to the point of

not being able to sleep at night. At the time, I

didn't know it was the flagyl.

Another doc gave me a prescription for neurontin. The

neurontin knocked the peripheral neuropathy out in two

days. I only took it for a few weeks-got off of the

flagyl and the neuropathy was gone for a few years.

However, when I tried Immunopro at different times it

would always cause neuropathy in me. I always wondered

if this was because there might have been contaminates

in it.

Also, I developed sinus disease-the allergic to mold

kind-I developed polyps that were blocking my sinuses

due to an allergic reaction to mold (the polyps

themselves were not made of mold).

I was told I needed surgery but we didn't have

insurance and couldn't afford it at the time-so, I

self treated with prednisone because it was the only

thing that got me to breath and to get some sleep.

Well, I had peripheral neuropathy every night from the

prednisone. Once I had the surgery and am now finally

getting off of prednisone-I haven't had any

neuropathy.

Anyhow, I hope this wasn't too off topic. I realize

you were going more in depth about lyme and the

problems of trying to be diagnosed-and people's

efforts and experiences.

I just wanted to put out my experience of some of the

other things that can cause neuropathy in case it may

help anyone on the list. (Also, levaquin also induced

neuropathy in me.)

Take care,

Gena

--- Edy Rayfield <edyrayfield@...> wrote:

> Hello Ballady, Yes, I was diagnosed for almost 30

> years with CFS and 2 years ago tested positive for

> lyme and coinfections. I'm including a excerpt from

> an article just recently published. The entire

> article is in the Los Altos paper. Adrienne this

> may explain more about your burning feet. I'm being

> treated for it but so far getting nowhere and am now

> down to HBOT only.

>

> Both have undergone a regimen of powerful

> antibiotics and drugs, both have tallied immense

> medical bills. Both contracted the same coinfection,

> Babesiosis - a common occurrence because ticks

> transmit numerous other bacteria along with Lyme.

> The women continue to have neurological disorders

> and neuropathy - Schaffner experiences memory

> problems, Ellen suffers painful, burning legs and

> feet.

> Schaffner and Ellen are fighting back. Ellen,

> whose fatigue had prevented her from holding even

> part-time work, aims to resume work slowly, dividing

> her energy between freelance writing and personal

> fitness coaching. Schaffner, who contracted the

> disease a second time when bitten by another tick,

> has become an advocate for both her children and the

> Lyme disease community. Her daughter, who contracted

> Lyme disease before enrolling in UC Santa Cruz, has

> published articles in national journals in an effort

> to correct misunderstanding of the illness.

> Author Amy Tan freely shared her own experience

> with Lyme disease with a Celebrity Forum audience in

> April 2004. Her story of infection and diagnosis

> mirrors those above. Infected without realizing it,

> she associated the early symptoms with her frequent

> airline travel. When her symptoms expanded into

> seizures, memory loss, hallucinations and foot pain,

> like other sufferers, she went to her doctor for a

> diagnosis.

> Tan was " referred to specialist after specialist "

> and endured countless laboratory tests with no

> specific diagnosis. These were well-known

> physicians, recommended by her doctors in major

> urban centers - and they didn't know, she said.

> Tan finally matched her major symptoms with the

> description of Lyme disease on the Internet and

> found the name of a Lyme disease specialist. Within

> two weeks, she tested positive for Lyme on the

> Western blot, which confirmed that doctor's

> diagnosis. Because Tan, like Schaffner, Ellen and

> Theresa, received a late start on treatment, it took

> a while for her symptoms to lessen.

> She has become an advocate for awareness and early

> diagnosis. Tan pointed out that she is able to pay

> for the expensive treatment but that many insurance

> carriers refuse to cover the ongoing care.

> Lyme disease specialists have had to take up arms

> as well - not just for their patients' sake, but

> also for their own.

> " The medical community has gone after physicians

> who treat chronic Lyme disease, " said Stricker.

> Because of the controversy regarding long-term

> treatment, the few doctors who offer it have been

> threatened with prosecution and license revocation

> by national organizations that disagree with their

> treatments.

> In February 2005, the California Assembly sought

> to protect such doctors by passing an act to amend

> Section 2234.1 of the Business and Professions Code,

> making it unlawful for professional organizations to

> discipline physicians who aggressively treat

> long-term cases of Lyme disease. The bill later

> became law.

> " We need more legislation like this in other parts

> of the country, " said Stricker.

> For more information, visit the International Lyme

> and Associated Disease Society at www.ilads.org or

> the Centers for Disease Control and Prevention at

> www.cdc.gov.

> The Mountain View Lyme Support Group meets 6-8

> p.m. the second Tuesday of each month in Room D, El

> Camino Hospital, 2500 Grant Road. The next meeting

> is scheduled July 11.

>

>

> ballady4 <ballady4@...> wrote:

> A growing number of people think that CFS

> is a symptom of something

> else; more specifically, Lyme Disease. Many people

> who think they have

> (or have been diagnosed with) CFS are either testing

> positive for Lyme

> or are being given that diagnosis through clinical

> symptomology (so

> one can have Lyme even with negative or

> indeterminate test results.)

>

> I was diagnosed with CFS 14 years ago but last year

> tested positive

> for Lyme at a Lyme reputable lab. My symptoms have

> not changed so it

> is now thought that I have actually had Lyme all

> these years. I still

> have all the CFS type symtpoms but now see that

> these relate to Lyme

> as well.

> So I wonder if any of you have been tested for Lyme

> or have explored

> this possibility.

>

> Ballady

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hey Ballady, I almost don't know what to think, but keep on trying, after all

what else have we got to do. Bodies don't work and we want them to so badly.

I, too had mycoplasma, treated it for 6 months and now it's gone. Tested

positive for ciguatera toxin, nobody is even talking about that treatment.

Positive for HHV6 just to name a few......and Lyme and Babesiosis. And many

more. Why? I don't think my immune system is the problem. I haven't had a

cold or flu since I can remember, which it's said is " normal " for CFS because of

an overactive immune system. Well, which is it? Overactive or underactive?

Symptoms of an overactice immune system feels like the flu. Symptoms of an

underactive one feels like the flu because of all the pathagens.

The only thing that makes sense to me is to take one thing at a time,

eliminate it, see if there's improvement then move on to the next one. As with

glutathione being the king of the antioxidents, maybe lyme is the king of the

pathagens. It's obviously very happy to occupy my body while I waste away.

What's left is to find all the joy you can, even if it's for an hour a day and

look forward to it. And research you brains(what little are left!) out. Hope

your day goes well, Edy

ballady4 <ballady4@...> wrote:

Hi Edy and thanks for your thoughts on this. It is just because I feel

perplexed about the relationship CFS to Lyme and that no one I've

encountered, to date, seems to understand it either. I wonder if

everyone who has received the CFS diagnosis were to be tested (at a

reputable Lyme savy lab)how many would come out positive for Lyme,

which has reached epidemic-like proportions. In spite of this, it is

still dismissed by many in the " medical " community as an overblown or

possibly even non-existant problem. This is not only frustrating for

those of us who have Lymes, but curtails proper research into this

horrendous " ailment. "

Ballady

>

> Hi ,

>

> I was a bit taken aback by your statement below:

>

> > With all this suspicion that Lyme is at the bottom of Alzheimers,

> > MS and a number of other illnesses, saying that Lyme is CFS sounds

> > incompatible with the facts to someone with severe ME/CFS who looks

> > at all those Lyme sufferers who symptoms don't even remotely

> > resemble that type of illness. Something must explain the

> > difference.

>

> > -

> >

> From what I understand, I think what is being suggested is that CFS is

> a " symptom " of Lyme. But are you saying those with Lyme don't have as

> severe symptoms as those who have been diagnosed with CFS? And/or are

> you saying that the symptomology for Lyme and CFS are vastly

> different? You might want to visit some Lyme boards to learn of the

> devasting symptoms that are being reported by most " lymies " but you

> would also hear how VERY similar those symtoms are to what is being

> labeled CFS. I have tested positive for Lyme. I also, supposedly, have

> had CFS for 14 years. After extensive research, I really see little

> difference except that one is " supposedly " due to a virus and the

> other a spirochete.

>

> I only bring up this question CFS/Lyme because I think the

> similarities in symptoms or the underlying relationship has not been

> adequately explored. I'm still exploring it myself.

>

> Ballady

>

>

>

>

>

>

>

[Guest guest]

, My LLMD has told me that the symptoms of Lyme on the West Coast are

different from the East Coast because the bugs are slightly different as are the

coinfections. They vary in the genetic codes even tho they're the same species

of bug there are differences. And I believe this. Those of us on the West end

have more of CFS like symptoms. Folks in the East have more of arthritis like

symptoms. If you do some research on this you'll find it to be mostly so.

There are crossovers, but there are differences as well. This has been

researched.

erikmoldwarrior <erikmoldwarrior@...> wrote: " ballady4 "

<ballady4@...> wrote:

> Hi ,

> I was a bit taken aback by your statement below:

> > With all this suspicion that Lyme is at the bottom of

Alzheimers, MS and a number of other illnesses, saying that Lyme is

CFS sounds incompatible with the facts to someone with severe ME/CFS

who looks at all those Lyme sufferers who symptoms don't even

remotely resemble that type of illness. Something must explain the

difference. -<<

>

> From what I understand, I think what is being suggested is that

CFS is a " symptom " of Lyme. But are you saying those with Lyme don't

have as severe symptoms as those who have been diagnosed with CFS?

And/or are you saying that the symptomology for Lyme and CFS are

vastly different? You might want to visit some Lyme boards to learn

of the devasting symptoms that are being reported by most " lymies "

but you would also hear how VERY similar those symtoms are to what

is being labeled CFS. I have tested positive for Lyme. I also,

supposedly, have had CFS for 14 years. After extensive research, I

really see little difference except that one is " supposedly " due to

a virus and the other a spirochete.

I only bring up this question CFS/Lyme because I think the

similarities in symptoms or the underlying relationship has not been

adequately explored. I'm still exploring it myself.

> Ballady

>

MS and ALS are devastating, but they are devastating in a much

different way than CFS.

I know an LLMD who is finding spiros in all kinds of people who are

running the gamut of illness - some with no apparent signs of

illness at all - but they do not consistently have the precise

pattern seen in those who CFS was based upon.

So it's pretty obvious that whether or not Lyme can lead to CFS,

HAVING Lyme does not mean you have CFS.

If I had Lyme prior to the Yuppie Flu, then I can safely say that

those Lyme symptoms were nothing like CFS.

I could not have claimed to have anything like CFS prior the the

Yuppie Flu.

If Lyme can do all these various things because it is " the great

imposter " and can do anything and everything, then one needs to find

out why it DIDN " T manifest with such great dissimilarity in Incline,

and why Yuppie Flu survivors had an illness that had strikingly

similar symptoms not seen in known Lyme clusters such as the JRA

epidemic that caused Polly Murray to discover the epidemic in Lyme

Connecticut which gave the illness its name.

Meaning that if Lyme is a precursor to CFS, it needed the Yuppie

Flu to take us there.

-

[Guest guest]

Edy,

OK, I have to jump in because I think I have Lyme and CFS, mycoplasma,

mold illness, and EMF sensitivity (to cell phones), and heavy metals,

and they are all distinctly different problems, the only common element

seems to be that together they deplete glutathione and adrenal hormones.

And that is probably the vicious circle, because then the depleted

hormones allow the infections and toxins to disseminate and reach a

steady state. We become a human mulch pile.

The reason I am fairly sure that Lyme and CFS are distinct is based on

my history. I first acquired Lyme about 18 years ago, I got a strange

rash, joint pains, some cognitive symptoms, breathlessness after

exertion, and a few anxiety problems. I lived in the west, had spent

time in the Tahoe area in the early 80s, but also spent time in the east

often on business, mostly Mass and CT. I remember driving through Old

Lyme CT during this time and joking about watching out for ticks (poetic

justice?). So hard to say if I had east or west coast Lyme but could

have been either. Anyway, I was treated by a dermatologist and a LCSW

(for the anxiety issues) and never knew what had happened because the

dermatologist said Lyme was not found in the west (yea right). The

symptoms gradually subsided and I got mostly well and went on with life.

Years later several Lyme tests showed this had been Bb. That Lyme

experience was not so bad for me, but it also was my first major

pathology. And I never had CFS during the whole episode, was a swimmer

and worked out daily, slept fine, and so forth. So for me, Lyme was NOT

the same as CFS. But the plot thickens.

About 10 years after this Lyme episode I was working in a high-intensity

research job, had a lot of toxin exposure, had a lot of amalgams

installed, worked around some GWI vets and some chronically sick

military people. I got a flu-like illness and that was a completely

different problem, it became standard CFS. Later tests showed the

flu-like illness was probably mycoplasma. I was treated by a GP who

said I was too cerebral and that was why I was sick, he sent me to a

psychiatrist. Later I worked with an Intern who believed I was sick but

was clueless about how to help. So I did what seemed intuitive to me, I

had daily steam saunas, wet saunas, spent time in a Jacuzzi, and tried

to burn the infection out. I also felt intuitively that I should take

calcium and magnesium, so I did. And it all worked, I recovered about

90%, and thinking I had beaten CFS I went on with my life, not

understanding the concept of an energy window. In retrospect I can see

how the pathologies were adding together and depleting my glutathione.

After recovering this second time, still not understanding CFS very

well, I took another stressful job, and moved to the east coast in 1999,

into a moldy house. I decided to try abx to see if I could get all the

way better. This time I crashed totally, and have yet to recover, even

though I moved to a better house. I got pancreatitis from the drugs

(probably from doxycycline, read the package inserts always first!), got

protozoas, and became an incubator for bad bugs, a mulch pile for them

to grow their families, and a toxic waste dump. And developed very low

glutathione, compromised methylation, poor sulfation, unbalanced liver

(fast phase I, slow phase II), based on tests. I also became EMF

sensitive, got mold illness, digestive dysbiosis, parasites, etc., etc.

AND, I should add that my Lyme symptoms returned as well, and several of

my CFS therapies, including salt/c and some immune-boosting, have caused

the Lyme rash sites to hurt again from time to time. So the Lyme has

also been reactivated as part of this latest CFS incident.

The common denominator in this seems to be an inability to defend

against a variety of pathogens, and an inability to detoxify adequately.

Maybe I am being a historical revisionist, but the vicious circle

hypothesis of glutathione insufficiency is the first explanation I have

hard that can tie this all together.

So the way I am now viewing things is that Lyme is just one of many

possible ways to trigger the CFS pathology, and a person can have Lyme

with or without CFS. The converse is probably also true, a person can

have CFS with or without Lyme. But if you do have both, you have the

full range of Lyme symptoms AND CFS symptoms, the worst of both worlds.

People who don't have both just would not understand. it is like chronic

fatigue with an extra helping of insanity.

To end on a positive note, I am becoming very optimistic that the

vicious circle hypothesis is the breakthrough we have needed for so

long. How ironic that Cheney discovered this problem originally but was

then not able to make the connection between all of the pathologies. I

am sure that we have some 'super bugs' that are causing much of the

depletion of glutathione, probably much more than just Lyme. So

stopping those bugs can probably help. But back when my glutathione

status was fine, before all the toxin exposure and amalgams and the

mycoplasma and mold, I was able to defend against Lyme just fine. So it

seems to be an additive situation. I think Sara is right, that we need

to do a little of everything: provide glutathione precursors, unblock

the pathways, and also replace glutathione, to get the levels high

enough to begin to recover. And also, probably anything we can do to

detox, kill bugs and avoid glutathione-depleting stress and mold will

also help.

--Kurt

Re: Re: CFS/Lyme

, My LLMD has told me that the symptoms of Lyme on the West Coast

are different from the East Coast because the bugs are slightly

different as are the coinfections. They vary in the genetic codes even

tho they're the same species of bug there are differences. And I believe

this. Those of us on the West end have more of CFS like symptoms. Folks

in the East have more of arthritis like symptoms. If you do some

research on this you'll find it to be mostly so. There are crossovers,

but there are differences as well. This has been researched.

[Guest guest]

Hi Kurt,

I don't like that you've suffered so, but I do like your concise post very

much. I've only been on this list a short time, but I've already learned

soooooooo much. I actually only have been computer literate for a couple of

years and have spent almost all of this time thinking I had CFS and that when

the breakthrough came I would hear about it because it would be all over the

news. Naive to the max.

Your story dovetails with mine as well. I was very strong and healthy when

young. Had my daughter at home, grew my food etc. I was raised in tick country

in the foothills, Sierra, and was probably infected then. I never even heard of

glutathione until about a year ago and immediately started taking liposomal

every day. I've had the mold panals done and am full up with them. Yeast, too.

I'm too ill to continue with replacing my amalgums, but hope to finish some day

soon.

There really isn't anything I disagree with that you wrote and I'm so glad we

can share our stories and what we think. In one of my posts today I wrote that

I'm just going to try to clear up one thing at a time while taking as much

glutathione as I can. I'm not sure how much is actually being absorbed so have

started nebulizing it. It's not a very pleasant way to take it in and once it

caused a severe allergic reaction. I tried I.V., but that was also very

uncomfortable for several days afterward. What is your delivery system for it?

Oh and I started ImmunoPro again and I do feel an improvement. I don't know it

you read other things I've written here, but I did see Dr. Lapp who

examined me for hours, ran tests and declared I didn't have CFS, but good luck

to me and keep searching.

I think because of whatever we're sensitive to, for me I also have lots of

PCBs, lead from stained glass work and cadmium from kiln firing glass, mercury

and aluminum, the scale tips and the vicious cycle gets started. Is that an

accurate retake on what you're saying? Pathagens find a comprimised habitat

like happy bacteria in a mulch pile and what you were before gets consumed and

turned into dirt. A good thing if you're topsoil, not so good if you're a human

bioform.

In my 30 years of this illness, I have been bedbound for more than half and

never recovered more than maybe 40% of health. The thing is I didn't do

anything at all. Just waited and watched. I honestly didn't know what to do.

I was way to fatigued to even read. Twice I've crashed for 5 and 6 years and am

now in another crash that is in its' 6th year. Precipitated by a shoulder

surgery and food poisining in a two week period. Anything, and I mean anything

you can offer is a big help. I look forward to your posts. Thank you for

jumping in. Your story is condensed, as is mine and maybe we can unravel this

puzzle. Always a pleasure to read you, Edy

P.S. I think they're probably distinct, too, but I honestly don't know at

this point.

" Kurt R. " <kurt@...> wrote:

Edy,

OK, I have to jump in because I think I have Lyme and CFS, mycoplasma,

mold illness, and EMF sensitivity (to cell phones), and heavy metals,

and they are all distinctly different problems, the only common element

seems to be that together they deplete glutathione and adrenal hormones.

And that is probably the vicious circle, because then the depleted

hormones allow the infections and toxins to disseminate and reach a

steady state. We become a human mulch pile.

The reason I am fairly sure that Lyme and CFS are distinct is based on

my history. I first acquired Lyme about 18 years ago, I got a strange

rash, joint pains, some cognitive symptoms, breathlessness after

exertion, and a few anxiety problems. I lived in the west, had spent

time in the Tahoe area in the early 80s, but also spent time in the east

often on business, mostly Mass and CT. I remember driving through Old

Lyme CT during this time and joking about watching out for ticks (poetic

justice?). So hard to say if I had east or west coast Lyme but could

have been either. Anyway, I was treated by a dermatologist and a LCSW

(for the anxiety issues) and never knew what had happened because the

dermatologist said Lyme was not found in the west (yea right). The

symptoms gradually subsided and I got mostly well and went on with life.

Years later several Lyme tests showed this had been Bb. That Lyme

experience was not so bad for me, but it also was my first major

pathology. And I never had CFS during the whole episode, was a swimmer

and worked out daily, slept fine, and so forth. So for me, Lyme was NOT

the same as CFS. But the plot thickens.

About 10 years after this Lyme episode I was working in a high-intensity

research job, had a lot of toxin exposure, had a lot of amalgams

installed, worked around some GWI vets and some chronically sick

military people. I got a flu-like illness and that was a completely

different problem, it became standard CFS. Later tests showed the

flu-like illness was probably mycoplasma. I was treated by a GP who

said I was too cerebral and that was why I was sick, he sent me to a

psychiatrist. Later I worked with an Intern who believed I was sick but

was clueless about how to help. So I did what seemed intuitive to me, I

had daily steam saunas, wet saunas, spent time in a Jacuzzi, and tried

to burn the infection out. I also felt intuitively that I should take

calcium and magnesium, so I did. And it all worked, I recovered about

90%, and thinking I had beaten CFS I went on with my life, not

understanding the concept of an energy window. In retrospect I can see

how the pathologies were adding together and depleting my glutathione.

After recovering this second time, still not understanding CFS very

well, I took another stressful job, and moved to the east coast in 1999,

into a moldy house. I decided to try abx to see if I could get all the

way better. This time I crashed totally, and have yet to recover, even

though I moved to a better house. I got pancreatitis from the drugs

(probably from doxycycline, read the package inserts always first!), got

protozoas, and became an incubator for bad bugs, a mulch pile for them

to grow their families, and a toxic waste dump. And developed very low

glutathione, compromised methylation, poor sulfation, unbalanced liver

(fast phase I, slow phase II), based on tests. I also became EMF

sensitive, got mold illness, digestive dysbiosis, parasites, etc., etc.

AND, I should add that my Lyme symptoms returned as well, and several of

my CFS therapies, including salt/c and some immune-boosting, have caused

the Lyme rash sites to hurt again from time to time. So the Lyme has

also been reactivated as part of this latest CFS incident.

The common denominator in this seems to be an inability to defend

against a variety of pathogens, and an inability to detoxify adequately.

Maybe I am being a historical revisionist, but the vicious circle

hypothesis of glutathione insufficiency is the first explanation I have

hard that can tie this all together.

So the way I am now viewing things is that Lyme is just one of many

possible ways to trigger the CFS pathology, and a person can have Lyme

with or without CFS. The converse is probably also true, a person can

have CFS with or without Lyme. But if you do have both, you have the

full range of Lyme symptoms AND CFS symptoms, the worst of both worlds.

People who don't have both just would not understand. it is like chronic

fatigue with an extra helping of insanity.

To end on a positive note, I am becoming very optimistic that the

vicious circle hypothesis is the breakthrough we have needed for so

long. How ironic that Cheney discovered this problem originally but was

then not able to make the connection between all of the pathologies. I

am sure that we have some 'super bugs' that are causing much of the

depletion of glutathione, probably much more than just Lyme. So

stopping those bugs can probably help. But back when my glutathione

status was fine, before all the toxin exposure and amalgams and the

mycoplasma and mold, I was able to defend against Lyme just fine. So it

seems to be an additive situation. I think Sara is right, that we need

to do a little of everything: provide glutathione precursors, unblock

the pathways, and also replace glutathione, to get the levels high

enough to begin to recover. And also, probably anything we can do to

detox, kill bugs and avoid glutathione-depleting stress and mold will

also help.

--Kurt

Re: Re: CFS/Lyme

, My LLMD has told me that the symptoms of Lyme on the West Coast

are different from the East Coast because the bugs are slightly

different as are the coinfections. They vary in the genetic codes even

tho they're the same species of bug there are differences. And I believe

this. Those of us on the West end have more of CFS like symptoms. Folks

in the East have more of arthritis like symptoms. If you do some

research on this you'll find it to be mostly so. There are crossovers,

but there are differences as well. This has been researched.

[Guest guest]

Many of us have Lyme. I have been tested regulatory since the 1990's and

finally came up indeterminate (Ignenex). Treament with Zithromax, and

then Minocin has allowed me to arise earlier so I enjoy mornings now,

however, no-one is absolutely sure that I have Lyme, including Rapheal

Sticker, MD (president of the International Lyme Disease Assoc.).

Anyway, I also have defects in my genes affecting detoxification, and

have on-going viral and fungal infections so I think it is not an either

or situation. Many of us have Lyme, EVB, and other infectious agents.

How our bodies handle (or don't handle) these infections and also

chemicals and metals in the environment is the real issue. We are

dealing with complex, often multiple problems with underlying immune

system dysregulation which we are just beginning to understand the

genetic basis of. Joanee

ballady4 wrote:

>A growing number of people think that CFS is a symptom of something

>else; more specifically, Lyme Disease. Many people who think they have

>(or have been diagnosed with) CFS are either testing positive for Lyme

>or are being given that diagnosis through clinical symptomology (so

>one can have Lyme even with negative or indeterminate test results.)

>

>I was diagnosed with CFS 14 years ago but last year tested positive

>for Lyme at a Lyme reputable lab. My symptoms have not changed so it

>is now thought that I have actually had Lyme all these years. I still

>have all the CFS type symtpoms but now see that these relate to Lyme

>as well.

>So I wonder if any of you have been tested for Lyme or have explored

>this possibility.

>

>Ballady

>

>

>

>

>

>

>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

Hi Edy,

I haven't been following this thread, but thought I'd jump in. My

story is much the same, Lyme, Babesia, heavy metals, throw in a low

dose chronic carbon monoxide exposure, etc. I would just urge you to

make sure your detox pathways are working well before you work on your

amalgams and heavy metals. I had full mouth restoration in 1995, did

DMPS IV pushes to chelate, tests indicated that I excreted no mercury.

I did acquire a whole bunch of new symptoms, though, afterwards that

still continue. Although I did a ton of homework before having the

dental work done and chelating, not much was known about the

importance of glutathione and the detox pathways. A lot more is known

now. A couple of years ago I was advised by a naturopath to load up on

glutathione before and after attempting to remove heavy metals.

Unfortunately I am one of the folks who is unable to build up

glutathione, so I am having the Amy Yasko testing done on the

methylation pathways, and have to probably work on that first.

It's like a tightly knotted ball of string we have to unravel.

Best of luck.

Michele

> Edy,

>

[Guest guest]

Regarding the Bowen test. This is just a personal opinion, but I have

seen this discussed on other groups and so studied out the issue a

little.

The Bowen test uses a reverse antibody process. In other words, rather

than looking for antibodies to the Bb bacteria, they take a known Bb

antibody, fluorescent stain that antibody in a way that will show when

it finds a Bb organism to munch on, and then introduces the marked

antibody it into YOUR blood sample. Then they put a special light on

the sample and count the frequency of hits at various dilutions. Thus,

their levels tell you how many of their antibodies found a 'hit' in your

blood sample. The problem with this scenario is that their antibodies,

like all antibodies, can be cross-reactive with other types of

pathogens, perhaps non-pathogenic species of Borrelia, for example.

Bowen claims this is not the case because of the way that they ran their

initial tests with controlled strains. However, there is absolutely no

way they could run controls against all Borrelia species, and there are

hundreds of non-pathogenic Borrelia spirochetes in our flora and

environment. We are simply awash with spirochetes, the whole world is,

that is a regular class of bacteria. Only a few are pathogens.

In the traditional tests, such as the Western Blot tests, the lab looks

for antibody levels rather than antigen levels (the actual bugs), so the

risk is different, their test often fails to find antibodies even when

the antigens are present, such as in the case of insufficient immunity

or an old infection (the antibodies are only produced by the body for a

fixed length of time) so therefore they have a lot of false negatives.

Bowen's claim is interesting; they say their test is better because they

find actual antigen levels, rather than just the antibodies. On the

surface this seems comforting; they have found the real Bb bugs. But

what is not being said is that they can not really guarantee that the

antigens they find are the pathogenic strains, due to the nature of

antibody cross-reactivity.

I am not anti-Bowen, I have had their test and it was useful, found a

co-infection in my son that other labs would not have even looked for.

But I think they need to explain the 100% positive rate, including

positives in many people who are not even ill. In my mind this is an

obvious problem.

--Kurt

Re: CFS/Lyme

Hi everyone,

If a person diagnosed as CFS tests positive for Lyme, you don't know if

Lyme is the core factor in your symptoms or if it is one of seven core

factors in your symptoms. I think Lyme is an important factor, but it's

importance is overtstated. Do we know that Lyme is more important than

other infections, e.g. rikettsial, mycoplasma, chlamydia? That's not an

easy question to answer. I personally think Lyme is one of many factors

which contribute to CFS.

See posts below about Lyme significance and diaganosis. They write the

bowen test is not reliable as it appears to test virtually 100% of

people positive.

--------------------------------------

[CDG] Tests for Lyme responses

Q: I have used Bowen Lab for Lymes detection. Would be intersted in

knowing protocols that have shown positive results. MS

A1: I reported on Lyme and the Bowen test in Second Opinion many

months ago. I used the Bowen test and found that 100% of those I

tested were positive. Does that mean the test is invalid? No. Does

that make that test and all other Lyme tests less useful, likely

yes. For example, even I was positive with a titer of 1:64, rather

high. Yet those who know me, I'm sure, would never suspect that I

harbor this so called terrible pathogen I abound with energy and

even did the Grand canyon backpacking last June while those half my

age helicoptered in.

It is my feeling that Lyme is ubiquitous. Read the article on my

website www.secondopinionnewsletter.com. It is very easily

transmitted, doesn't require a tick bite as most assume, and is the

new spirochete of the 21st century as Lues was in the older times.

Do we have to succumb? NO! It is all in how our God given immune

systems respond and keep the bugs in check.

Remember the battle between Pasteur and Bechamp. It is the terrain,

not the bug. I have seen good results with suspected Lyme simply by

treating the patient and not the infection. No one size fits all.

Jay Rowen, MD

www.secondopinionnewsletter.com

A2: MS,

In response to Bowen test for lyme, I have several thoughts. I'd

also welcome input to my response from the readers.

Joanne Whitaker's work has been criticized because virtually 100% of

specimens tested for Lyme come back positive. Either her testing is

accurate or not. If accurate, then I see one of two scenarios.

1. Only people with lyme are getting her test done. This would seem

over time to be very unlikely.

2. Many, most or all of us have been exposed to Lyme, much like

EBV,CMV and other infections. I doubt the only mode of transmission

is the dear tick. Probably because of a weakened immune system, the

bug multiplies or becomes symptomatic. This scenario seems more

likely.

Joanne believes this organism to be one of the " smartest " and most

difficult to treat in the " bacterial " kingdom. She and Lida Mattman

believe (I tend to agree) that this organism is pleomorphic and

probably has several forms. It can shed its' cell wall and look like

a virus. Lida and others believe that viruses, bacteria and fungi

may all be variations of the same organisms. With Lyme, this ability

enables it to elude detection and treatment. It is my contention you

have to throw everything but the kitchen sink at it to achieve

success. If not attacked at its' various stages of

development/change, it won't be eradicated.

This also brings up the question. Do we ever really eradicate it or

simply get it under control? If we all have been infected, maybe we

should really be looking at why the immune system is not able to

combat the bug and why others don't manifest the disease. In your

case, even though you gave intensive treatment, it doesn't seem

surprising to me that the numbers didn't change given the above

thoughts. I'd be curious if the patient had any clinical

improvement.

Steve Grable MD

A3: Berkley Bedell is still my hero on Lymes.......did anyone

contact him on the Lymes question from the last session on this

condition? I have his contact if you are interested. His

Foundation is doing great research.

Jan B. Hamilton, Ph.D., Registered Dietitian

President and CEO of Nutritional Biomedicine

Box 8458

Aspen, Co. 81612

970-925-5588 or 970-309-1675

nutritionalbiomedicine.com

Also:

1000 Jefferson Dr.

Plainview, Texas 79072

806-296-9355

A4: I would recommend IGENE-X from Palo Alto, CA for Lyme

evaluation; talk with Dr. Nick . I used to utilize Bowen, but

every sample I sent to that laboratory had a positive result.

Either it is too sensitive a test or the population is highly

positive. The point is, I need to utilize a laboratory that will

give a significant number of negative tests to confirm reliability.

I would recommend ILADS.org for information and protocols on Lyme

treatment and consider attending an

International Conference on Lyme. I have attended 3 conferences,

have a patient population of over 300 confirmed Lyme cases, utilize

holistic, traditional and alternative therapies in my practice.

Good luck.

Steve Meress MD FACP Fox Valley Wellness Center, Fond du Lac, WI

920-922-5433

A5: Dear Health Care Members:

I want you to know that there are nice people who will confirm your

fears because they have a test that shows 99% of us have Lyme so

please change YOUR focus and read more about total body burden of

pathogens.

I guarantee you have CMV or Chlamydia and once you realize that you

also have a lot of lead and mercury and DDT and Dioxins and PCB's

and, I can prove that you do not have enough Iodine or Magnesium or

Vitamin D, then you can start to focus on getting healthy.

There is no short cut; forget about Lyme and focus on doing

everything correctly. We all need more nutrients in and more toxins

out. The day will come that you will spend your money on gene

testing so that we can personalize your approach.

Sincerely,

Garry F. Gordon MD, DO, MD(H)

President, Gordon Research Institute

www.gordonresearch.com

[Guest guest]

Edy Rayfield wrote:

>

> , My LLMD has told me that the symptoms of Lyme on the West

Coast are different from the East Coast because the bugs are

slightly different as are the coinfections. They vary in the

genetic codes even tho they're the same species of bug there are

differences. And I believe this. Those of us on the West end have

more of CFS like symptoms. Folks in the East have more of arthritis

like symptoms. If you do some research on this you'll find it to be

mostly so. There are crossovers, but there are differences as

well. This has been researched.

>

Yes, I've heard that hypothesis too - that it is the specificity of

the co-factors which delineates the difference.

In that case - people with Lyme on the East Coast could not be said

to have CFS although they have Lyme - and people in the West would

indeed have Lyme - but only with a specific co-factor.

Meaning that the co-factor is the critical difference in what

constitutes " CFS " from " JRA type Lyme " and others.

Now you would think it wouldn't be all that difficult to go back to

the original people used in the Holmes study that resulted in the

CDC calling the illness " CFS " and find out which co-factor it is.

Because whatever those people had - would be whatever " CFS " is.

-

[Guest guest]

Edy,

Right now I am only using RenewPro, several supplements to support the

glutathione pathway, and salt/c (which I believe helps by recycling

glutathione, among other things). I am starting Lipceutical next week,

so that will be interesting. So I am still early in the process of

glutathione boosting. I am also supporting methylation and sulfation,

currently experimenting with DMT, folinic acid, methyl B12, subdermal

Mag. Sulfate cream and Epsom salt baths.

Regarding your situation, seems like salt/c might be able to help. I

have used salt/c for over two years now at a variety of doses, and my

most recent steady dose was 6g daily. But just recently I started

experimenting with salt/c to see if it recycles glutathione, and have

had some possible success. Here is what I am currently trying, when I

feel the beginning of an energy drop. I take a large dose of salt/c, as

much as 1 tsp, which is 4g, of each. And that does do something almost

immediate, within about 10 minutes I can feel the difference, and my

energy stops dropping and is sustained for about 2-3 hours. I can do

this several times in a day (well, maybe twice). OF course, before

doing this I would recommend working up to tolerating that level of

salt/c dose, there can be some serious herx from ramping-up a salt/c

dose, probably from die-off from bugs in the stomach and/or intestines.

The people who have had the greatest success with salt/c have generally

been at high dosage, some are up to around 18g daily. This sounds like

a lot but some ordinary people consume 20g of salt daily with food,

without even being aware of their intake levels. The difference is that

this is natural unprocessed salt that does not contain additives (like

table salt does), and it is taken on an empty stomach. So it can pack a

wallop of an abx effect in the gut and apparently also the lymphatic

system. The levels in the blood do not appear to increase much though.

--Kurt

Re: Re: CFS/Lyme

, My LLMD has told me that the symptoms of Lyme on the West Coast

are different from the East Coast because the bugs are slightly

different as are the coinfections. They vary in the genetic codes even

tho they're the same species of bug there are differences. And I believe

this. Those of us on the West end have more of CFS like symptoms. Folks

in the East have more of arthritis like symptoms. If you do some

research on this you'll find it to be mostly so. There are crossovers,

but there are differences as well. This has been researched.

[Guest guest]

You finally explained why Bowen is inaccurate . Igenex is the proper

test as far as I'm concerned. A friend I met at my holistic doc's had

frequent sinus infections, what she thinks is severe candida, and lots

of gut problems. I told her I thought it was lyme, and she said she'd

wondered about lyme because she hiked so often in the woods in

northern california when growing up. She's 34, and healthy otherwise

and there is no reason she should have such problems. She just tested

positive via Igenex.

As for whether lyme is a problem, the problem is that it's called

lyme. Basically, if you get bitten, esp. multiple times, i.e.

VACCINATED repeatedly with LIVE bugs, of different types, red blood

cell parasites, spirochetes, microfilarial worms etc etc, you are

going to get very sick.

>

> Regarding the Bowen test. This is just a personal opinion, but I have

> seen this discussed on other groups and so studied out the issue a

> little.

>

> The Bowen test uses a reverse antibody process. In other words, rather

> than looking for antibodies to the Bb bacteria, they take a known Bb

> antibody, fluorescent stain that antibody in a way that will show when

> it finds a Bb organism to munch on, and then introduces the marked

> antibody it into YOUR blood sample. Then they put a special light on

> the sample and count the frequency of hits at various dilutions. Thus,

> their levels tell you how many of their antibodies found a 'hit' in your

> blood sample. The problem with this scenario is that their antibodies,

> like all antibodies, can be cross-reactive with other types of

> pathogens, perhaps non-pathogenic species of Borrelia, for example.

> Bowen claims this is not the case because of the way that they ran their

> initial tests with controlled strains. However, there is absolutely no

> way they could run controls against all Borrelia species, and there are

> hundreds of non-pathogenic Borrelia spirochetes in our flora and

> environment. We are simply awash with spirochetes, the whole world is,

> that is a regular class of bacteria. Only a few are pathogens.

>

> In the traditional tests, such as the Western Blot tests, the lab looks

> for antibody levels rather than antigen levels (the actual bugs), so the

> risk is different, their test often fails to find antibodies even when

> the antigens are present, such as in the case of insufficient immunity

> or an old infection (the antibodies are only produced by the body for a

> fixed length of time) so therefore they have a lot of false negatives.

>

> Bowen's claim is interesting; they say their test is better because they

> find actual antigen levels, rather than just the antibodies. On the

> surface this seems comforting; they have found the real Bb bugs. But

> what is not being said is that they can not really guarantee that the

> antigens they find are the pathogenic strains, due to the nature of

> antibody cross-reactivity.

>

> I am not anti-Bowen, I have had their test and it was useful, found a

> co-infection in my son that other labs would not have even looked for.

> But I think they need to explain the 100% positive rate, including

> positives in many people who are not even ill. In my mind this is an

> obvious problem.

>

> --Kurt

>

>

>

> Re: CFS/Lyme

>

> Hi everyone,

>

> If a person diagnosed as CFS tests positive for Lyme, you don't know if

> Lyme is the core factor in your symptoms or if it is one of seven core

> factors in your symptoms. I think Lyme is an important factor, but it's

> importance is overtstated. Do we know that Lyme is more important than

> other infections, e.g. rikettsial, mycoplasma, chlamydia? That's not an

> easy question to answer. I personally think Lyme is one of many factors

> which contribute to CFS.

>

> See posts below about Lyme significance and diaganosis. They write the

> bowen test is not reliable as it appears to test virtually 100% of

> people positive.

>

> --------------------------------------

>

> [CDG] Tests for Lyme responses

>

> Q: I have used Bowen Lab for Lymes detection. Would be intersted in

> knowing protocols that have shown positive results. MS

>

> A1: I reported on Lyme and the Bowen test in Second Opinion many

> months ago. I used the Bowen test and found that 100% of those I

> tested were positive. Does that mean the test is invalid? No. Does

> that make that test and all other Lyme tests less useful, likely

> yes. For example, even I was positive with a titer of 1:64, rather

> high. Yet those who know me, I'm sure, would never suspect that I

> harbor this so called terrible pathogen I abound with energy and

> even did the Grand canyon backpacking last June while those half my

> age helicoptered in.

>

> It is my feeling that Lyme is ubiquitous. Read the article on my

> website www.secondopinionnewsletter.com. It is very easily

> transmitted, doesn't require a tick bite as most assume, and is the

> new spirochete of the 21st century as Lues was in the older times.

> Do we have to succumb? NO! It is all in how our God given immune

> systems respond and keep the bugs in check.

>

> Remember the battle between Pasteur and Bechamp. It is the terrain,

> not the bug. I have seen good results with suspected Lyme simply by

> treating the patient and not the infection. No one size fits all.

>

> Jay Rowen, MD

> www.secondopinionnewsletter.com

>

> A2: MS,

> In response to Bowen test for lyme, I have several thoughts. I'd

> also welcome input to my response from the readers.

> Joanne Whitaker's work has been criticized because virtually 100% of

> specimens tested for Lyme come back positive. Either her testing is

> accurate or not. If accurate, then I see one of two scenarios.

> 1. Only people with lyme are getting her test done. This would seem

> over time to be very unlikely.

> 2. Many, most or all of us have been exposed to Lyme, much like

> EBV,CMV and other infections. I doubt the only mode of transmission

> is the dear tick. Probably because of a weakened immune system, the

> bug multiplies or becomes symptomatic. This scenario seems more

> likely.

> Joanne believes this organism to be one of the " smartest " and most

> difficult to treat in the " bacterial " kingdom. She and Lida Mattman

> believe (I tend to agree) that this organism is pleomorphic and

> probably has several forms. It can shed its' cell wall and look like

> a virus. Lida and others believe that viruses, bacteria and fungi

> may all be variations of the same organisms. With Lyme, this ability

> enables it to elude detection and treatment. It is my contention you

> have to throw everything but the kitchen sink at it to achieve

> success. If not attacked at its' various stages of

> development/change, it won't be eradicated.

>

> This also brings up the question. Do we ever really eradicate it or

> simply get it under control? If we all have been infected, maybe we

> should really be looking at why the immune system is not able to

> combat the bug and why others don't manifest the disease. In your

> case, even though you gave intensive treatment, it doesn't seem

> surprising to me that the numbers didn't change given the above

> thoughts. I'd be curious if the patient had any clinical

> improvement.

>

> Steve Grable MD

>

> A3: Berkley Bedell is still my hero on Lymes.......did anyone

> contact him on the Lymes question from the last session on this

> condition? I have his contact if you are interested. His

> Foundation is doing great research.

> Jan B. Hamilton, Ph.D., Registered Dietitian

> President and CEO of Nutritional Biomedicine

> Box 8458

> Aspen, Co. 81612

> 970-925-5588 or 970-309-1675

> nutritionalbiomedicine.com

> Also:

> 1000 Jefferson Dr.

> Plainview, Texas 79072

> 806-296-9355

>

> A4: I would recommend IGENE-X from Palo Alto, CA for Lyme

> evaluation; talk with Dr. Nick . I used to utilize Bowen, but

> every sample I sent to that laboratory had a positive result.

> Either it is too sensitive a test or the population is highly

> positive. The point is, I need to utilize a laboratory that will

> give a significant number of negative tests to confirm reliability.

> I would recommend ILADS.org for information and protocols on Lyme

> treatment and consider attending an

> International Conference on Lyme. I have attended 3 conferences,

> have a patient population of over 300 confirmed Lyme cases, utilize

> holistic, traditional and alternative therapies in my practice.

> Good luck.

> Steve Meress MD FACP Fox Valley Wellness Center, Fond du Lac, WI

> 920-922-5433

>

> A5: Dear Health Care Members:

>

> I want you to know that there are nice people who will confirm your

> fears because they have a test that shows 99% of us have Lyme so

> please change YOUR focus and read more about total body burden of

> pathogens.

>

> I guarantee you have CMV or Chlamydia and once you realize that you

> also have a lot of lead and mercury and DDT and Dioxins and PCB's

> and, I can prove that you do not have enough Iodine or Magnesium or

> Vitamin D, then you can start to focus on getting healthy.

>

> There is no short cut; forget about Lyme and focus on doing

> everything correctly. We all need more nutrients in and more toxins

> out. The day will come that you will spend your money on gene

> testing so that we can personalize your approach.

>

> Sincerely,

>

> Garry F. Gordon MD, DO, MD(H)

> President, Gordon Research Institute

> www.gordonresearch.com

>

>

[Guest guest]

I Think the obvious importance of Lyme would be when it goes undetected and

untreated. If it were easy, it would not count for so much. And you can't tell

how significant it may or may not be in any individual situation unless and

until you can eliminate it.

Adrienne

[CDG] Tests for Lyme responses

Q: I have used Bowen Lab for Lymes detection. Would be intersted in

knowing protocols that have shown positive results. MS

A1: I reported on Lyme and the Bowen test in Second Opinion many

months ago. I used the Bowen test and found that 100% of those I

tested were positive. Does that mean the test is invalid? No. Does

that make that test and all other Lyme tests less useful, likely

yes. For example, even I was positive with a titer of 1:64, rather

high. Yet those who know me, I'm sure, would never suspect that I

harbor this so called terrible pathogen I abound with energy and

even did the Grand canyon backpacking last June while those half my

age helicoptered in.

It is my feeling that Lyme is ubiquitous. Read the article on my

website www.secondopinionnewsletter.com. It is very easily

transmitted, doesn't require a tick bite as most assume, and is the

new spirochete of the 21st century as Lues was in the older times.

Do we have to succumb? NO! It is all in how our God given immune

systems respond and keep the bugs in check.

Remember the battle between Pasteur and Bechamp. It is the terrain,

not the bug. I have seen good results with suspected Lyme simply by

treating the patient and not the infection. No one size fits all.

Jay Rowen, MD

www.secondopinionnewsletter.com

A2: MS,

In response to Bowen test for lyme, I have several thoughts. I'd

also welcome input to my response from the readers.

Joanne Whitaker's work has been criticized because virtually 100% of

specimens tested for Lyme come back positive. Either her testing is

accurate or not. If accurate, then I see one of two scenarios.

1. Only people with lyme are getting her test done. This would seem

over time to be very unlikely.

2. Many, most or all of us have been exposed to Lyme, much like

EBV,CMV and other infections. I doubt the only mode of transmission

is the dear tick. Probably because of a weakened immune system, the

bug multiplies or becomes symptomatic. This scenario seems more

likely.

Joanne believes this organism to be one of the " smartest " and most

difficult to treat in the " bacterial " kingdom. She and Lida Mattman

believe (I tend to agree) that this organism is pleomorphic and

probably has several forms. It can shed its' cell wall and look like

a virus. Lida and others believe that viruses, bacteria and fungi

may all be variations of the same organisms. With Lyme, this ability

enables it to elude detection and treatment. It is my contention you

have to throw everything but the kitchen sink at it to achieve

success. If not attacked at its' various stages of

development/change, it won't be eradicated.

This also brings up the question. Do we ever really eradicate it or

simply get it under control? If we all have been infected, maybe we

should really be looking at why the immune system is not able to

combat the bug and why others don't manifest the disease. In your

case, even though you gave intensive treatment, it doesn't seem

surprising to me that the numbers didn't change given the above

thoughts. I'd be curious if the patient had any clinical

improvement.

Steve Grable MD

A3: Berkley Bedell is still my hero on Lymes.......did anyone

contact him on the Lymes question from the last session on this

condition? I have his contact if you are interested. His

Foundation is doing great research.

Jan B. Hamilton, Ph.D., Registered Dietitian

President and CEO of Nutritional Biomedicine

Box 8458

Aspen, Co. 81612

970-925-5588 or 970-309-1675

nutritionalbiomedicine.com

Also:

1000 Jefferson Dr.

Plainview, Texas 79072

806-296-9355

A4: I would recommend IGENE-X from Palo Alto, CA for Lyme

evaluation; talk with Dr. Nick . I used to utilize Bowen, but

every sample I sent to that laboratory had a positive result.

Either it is too sensitive a test or the population is highly

positive. The point is, I need to utilize a laboratory that will

give a significant number of negative tests to confirm reliability.

I would recommend ILADS.org for information and protocols on Lyme

treatment and consider attending an

International Conference on Lyme. I have attended 3 conferences,

have a patient population of over 300 confirmed Lyme cases, utilize

holistic, traditional and alternative therapies in my practice.

Good luck.

Steve Meress MD FACP Fox Valley Wellness Center, Fond du Lac, WI

920-922-5433

A5: Dear Health Care Members:

I want you to know that there are nice people who will confirm your

fears because they have a test that shows 99% of us have Lyme so

please change YOUR focus and read more about total body burden of

pathogens.

I guarantee you have CMV or Chlamydia and once you realize that you

also have a lot of lead and mercury and DDT and Dioxins and PCB's

and, I can prove that you do not have enough Iodine or Magnesium or

Vitamin D, then you can start to focus on getting healthy.

There is no short cut; forget about Lyme and focus on doing

everything correctly. We all need more nutrients in and more toxins

out. The day will come that you will spend your money on gene

testing so that we can personalize your approach.

Sincerely,

Garry F. Gordon MD, DO, MD(H)

President, Gordon Research Institute

www.gordonresearch.com

[Guest guest]

Edy,

This is very interesting! I had never heard this before but it certainly

applies to me. I was wondering why people on the Lyme boards kept

talking about pain and sore muscles, etc. as I have not had those

particular symptoms. Now it makes sense as my infection is also from the

West Coast. Thank you so much for posting this! It actually answers a

lot of questions for me.

Ballady

>

[Guest guest]

Kurt,

More interesting information to contemplate, especially the below and as

a person who has both Lyme and CFS (you're right about the many who do

not understand) I always felt not quite in the right element stationing

myself in just the Lyme or just the CFS boards, so have been going back

and forth and feeling a little " schizo " in the process, but felt I

needed info. from both camps (Edy's information would fit with this as

well.)

Thank you for further clarifying for me. I don't know if other's feel

this way, but it is important to my healing process to understand what

I'm dealing with and to be able to " name the animal. "

Ballady

> So the way I am now viewing things is that Lyme is just one of many

> possible ways to trigger the CFS pathology, and a person can have Lyme

> with or without CFS. The converse is probably also true, a person can

> have CFS with or without Lyme. But if you do have both, you have the

> full range of Lyme symptoms AND CFS symptoms, the worst of both

worlds.

> People who don't have both just would not understand. it is like

chronic

> fatigue with an extra helping of insanity.

>

[Guest guest]

Hi Ballady,

Maybe some more folks will chime in on this one, but I've read over and over

again that the reason we feel like we have the " flu " is that the immune system

is turned on and doesn't have an off switch. Of course, that doesn't take into

account all the other things that can be comprimising it. But straight CFS

supposedly does this. When a person has the flu or cold, whatever, the awful

symptoms you feel aren't the pathagens, it's the immune response cells. They

make a fever to kill the bug, and generally make you feel lousy til all the

killing is over. The theory is that with CFS there's no shut off switch

hence....feeling like one has the flu all the time. CFS docs called it

Hyperalert immune response. This could be outdated tho, as I've focused mostly

on lyme, metals, and molds and yeasts recently. Hope that helps and maybe

encourages more researching. Edy

ballady4 <ballady4@...> wrote:

Hi again Edy,

Interesting that you say CFS is related to an overactive immune

system. I've always heard the opposite, which is why it is often

referred to as " running on empty. " Just more confusion, I guess.

The problem is no one (well, few) people die from CFS (they do from

Lyme complications, however)so the research money goes to those

illnesses that take more lives.

Ballady

> >

> > Hi ,

> >

> > I was a bit taken aback by your statement below:

> >

> > > With all this suspicion that Lyme is at the bottom of Alzheimers,

> > > MS and a number of other illnesses, saying that Lyme is CFS sounds

> > > incompatible with the facts to someone with severe ME/CFS who looks

> > > at all those Lyme sufferers who symptoms don't even remotely

> > > resemble that type of illness. Something must explain the

> > > difference.

> >

> > > -

> > >

> > From what I understand, I think what is being suggested is that CFS is

> > a " symptom " of Lyme. But are you saying those with Lyme don't have as

> > severe symptoms as those who have been diagnosed with CFS? And/or are

> > you saying that the symptomology for Lyme and CFS are vastly

> > different? You might want to visit some Lyme boards to learn of the

> > devasting symptoms that are being reported by most " lymies " but you

> > would also hear how VERY similar those symtoms are to what is being

> > labeled CFS. I have tested positive for Lyme. I also, supposedly, have

> > had CFS for 14 years. After extensive research, I really see little

> > difference except that one is " supposedly " due to a virus and the

> > other a spirochete.

> >

> > I only bring up this question CFS/Lyme because I think the

> > similarities in symptoms or the underlying relationship has not been

> > adequately explored. I'm still exploring it myself.

> >

> > Ballady

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Right on, both of you.

jill1313 <jenbooks13@...> wrote: You finally explained why

Bowen is inaccurate . Igenex is the proper

test as far as I'm concerned. A friend I met at my holistic doc's had

frequent sinus infections, what she thinks is severe candida, and lots

of gut problems. I told her I thought it was lyme, and she said she'd

wondered about lyme because she hiked so often in the woods in

northern california when growing up. She's 34, and healthy otherwise

and there is no reason she should have such problems. She just tested

positive via Igenex.

As for whether lyme is a problem, the problem is that it's called

lyme. Basically, if you get bitten, esp. multiple times, i.e.

VACCINATED repeatedly with LIVE bugs, of different types, red blood

cell parasites, spirochetes, microfilarial worms etc etc, you are

going to get very sick.

>

> Regarding the Bowen test. This is just a personal opinion, but I have

> seen this discussed on other groups and so studied out the issue a

> little.

>

> The Bowen test uses a reverse antibody process. In other words, rather

> than looking for antibodies to the Bb bacteria, they take a known Bb

> antibody, fluorescent stain that antibody in a way that will show when

> it finds a Bb organism to munch on, and then introduces the marked

> antibody it into YOUR blood sample. Then they put a special light on

> the sample and count the frequency of hits at various dilutions. Thus,

> their levels tell you how many of their antibodies found a 'hit' in your

> blood sample. The problem with this scenario is that their antibodies,

> like all antibodies, can be cross-reactive with other types of

> pathogens, perhaps non-pathogenic species of Borrelia, for example.

> Bowen claims this is not the case because of the way that they ran their

> initial tests with controlled strains. However, there is absolutely no

> way they could run controls against all Borrelia species, and there are

> hundreds of non-pathogenic Borrelia spirochetes in our flora and

> environment. We are simply awash with spirochetes, the whole world is,

> that is a regular class of bacteria. Only a few are pathogens.

>

> In the traditional tests, such as the Western Blot tests, the lab looks

> for antibody levels rather than antigen levels (the actual bugs), so the

> risk is different, their test often fails to find antibodies even when

> the antigens are present, such as in the case of insufficient immunity

> or an old infection (the antibodies are only produced by the body for a

> fixed length of time) so therefore they have a lot of false negatives.

>

> Bowen's claim is interesting; they say their test is better because they

> find actual antigen levels, rather than just the antibodies. On the

> surface this seems comforting; they have found the real Bb bugs. But

> what is not being said is that they can not really guarantee that the

> antigens they find are the pathogenic strains, due to the nature of

> antibody cross-reactivity.

>

> I am not anti-Bowen, I have had their test and it was useful, found a

> co-infection in my son that other labs would not have even looked for.

> But I think they need to explain the 100% positive rate, including

> positives in many people who are not even ill. In my mind this is an

> obvious problem.

>

> --Kurt

>

>

>

> Re: CFS/Lyme

>

> Hi everyone,

>

> If a person diagnosed as CFS tests positive for Lyme, you don't know if

> Lyme is the core factor in your symptoms or if it is one of seven core

> factors in your symptoms. I think Lyme is an important factor, but it's

> importance is overtstated. Do we know that Lyme is more important than

> other infections, e.g. rikettsial, mycoplasma, chlamydia? That's not an

> easy question to answer. I personally think Lyme is one of many factors

> which contribute to CFS.

>

> See posts below about Lyme significance and diaganosis. They write the

> bowen test is not reliable as it appears to test virtually 100% of

> people positive.

>

> --------------------------------------

>

> [CDG] Tests for Lyme responses

>

> Q: I have used Bowen Lab for Lymes detection. Would be intersted in

> knowing protocols that have shown positive results. MS

>

> A1: I reported on Lyme and the Bowen test in Second Opinion many

> months ago. I used the Bowen test and found that 100% of those I

> tested were positive. Does that mean the test is invalid? No. Does

> that make that test and all other Lyme tests less useful, likely

> yes. For example, even I was positive with a titer of 1:64, rather

> high. Yet those who know me, I'm sure, would never suspect that I

> harbor this so called terrible pathogen I abound with energy and

> even did the Grand canyon backpacking last June while those half my

> age helicoptered in.

>

> It is my feeling that Lyme is ubiquitous. Read the article on my

> website www.secondopinionnewsletter.com. It is very easily

> transmitted, doesn't require a tick bite as most assume, and is the

> new spirochete of the 21st century as Lues was in the older times.

> Do we have to succumb? NO! It is all in how our God given immune

> systems respond and keep the bugs in check.

>

> Remember the battle between Pasteur and Bechamp. It is the terrain,

> not the bug. I have seen good results with suspected Lyme simply by

> treating the patient and not the infection. No one size fits all.

>

> Jay Rowen, MD

> www.secondopinionnewsletter.com

>

> A2: MS,

> In response to Bowen test for lyme, I have several thoughts. I'd

> also welcome input to my response from the readers.

> Joanne Whitaker's work has been criticized because virtually 100% of

> specimens tested for Lyme come back positive. Either her testing is

> accurate or not. If accurate, then I see one of two scenarios.

> 1. Only people with lyme are getting her test done. This would seem

> over time to be very unlikely.

> 2. Many, most or all of us have been exposed to Lyme, much like

> EBV,CMV and other infections. I doubt the only mode of transmission

> is the dear tick. Probably because of a weakened immune system, the

> bug multiplies or becomes symptomatic. This scenario seems more

> likely.

> Joanne believes this organism to be one of the " smartest " and most

> difficult to treat in the " bacterial " kingdom. She and Lida Mattman

> believe (I tend to agree) that this organism is pleomorphic and

> probably has several forms. It can shed its' cell wall and look like

> a virus. Lida and others believe that viruses, bacteria and fungi

> may all be variations of the same organisms. With Lyme, this ability

> enables it to elude detection and treatment. It is my contention you

> have to throw everything but the kitchen sink at it to achieve

> success. If not attacked at its' various stages of

> development/change, it won't be eradicated.

>

> This also brings up the question. Do we ever really eradicate it or

> simply get it under control? If we all have been infected, maybe we

> should really be looking at why the immune system is not able to

> combat the bug and why others don't manifest the disease. In your

> case, even though you gave intensive treatment, it doesn't seem

> surprising to me that the numbers didn't change given the above

> thoughts. I'd be curious if the patient had any clinical

> improvement.

>

> Steve Grable MD

>

> A3: Berkley Bedell is still my hero on Lymes.......did anyone

> contact him on the Lymes question from the last session on this

> condition? I have his contact if you are interested. His

> Foundation is doing great research.

> Jan B. Hamilton, Ph.D., Registered Dietitian

> President and CEO of Nutritional Biomedicine

> Box 8458

> Aspen, Co. 81612

> 970-925-5588 or 970-309-1675

> nutritionalbiomedicine.com

> Also:

> 1000 Jefferson Dr.

> Plainview, Texas 79072

> 806-296-9355

>

> A4: I would recommend IGENE-X from Palo Alto, CA for Lyme

> evaluation; talk with Dr. Nick . I used to utilize Bowen, but

> every sample I sent to that laboratory had a positive result.

> Either it is too sensitive a test or the population is highly

> positive. The point is, I need to utilize a laboratory that will

> give a significant number of negative tests to confirm reliability.

> I would recommend ILADS.org for information and protocols on Lyme

> treatment and consider attending an

> International Conference on Lyme. I have attended 3 conferences,

> have a patient population of over 300 confirmed Lyme cases, utilize

> holistic, traditional and alternative therapies in my practice.

> Good luck.

> Steve Meress MD FACP Fox Valley Wellness Center, Fond du Lac, WI

> 920-922-5433

>

> A5: Dear Health Care Members:

>

> I want you to know that there are nice people who will confirm your

> fears because they have a test that shows 99% of us have Lyme so

> please change YOUR focus and read more about total body burden of

> pathogens.

>

> I guarantee you have CMV or Chlamydia and once you realize that you

> also have a lot of lead and mercury and DDT and Dioxins and PCB's

> and, I can prove that you do not have enough Iodine or Magnesium or

> Vitamin D, then you can start to focus on getting healthy.

>

> There is no short cut; forget about Lyme and focus on doing

> everything correctly. We all need more nutrients in and more toxins

> out. The day will come that you will spend your money on gene

> testing so that we can personalize your approach.

>

> Sincerely,

>

> Garry F. Gordon MD, DO, MD(H)

> President, Gordon Research Institute

> www.gordonresearch.com

>

>