letter to editor at immunesupport.com

[Guest guest]

Hi: I'm still on no mail, but wanted to send this. I think it's

important to let immunesupport.com know if you are disturbed by this

article. A whole lot of " CFS " patients read their newsletter

searching for answers, and should not be exposed to this kind of crap

without seeing the other side of the coin. If not, they may be

discouraged from pursuing a possible diagnosis of lyme or they might

disregard that borderline, or even positive, lyme test. If you go to

the article and click at the bottom of the page where it says email

us, you can write a quick note to the editor.

E.

http://www.ImmuneSupport.com/library/showarticle.cfm?ID=4794 & Reviewed=YES

The article " Antibiotics not effective in Post-Lyme syndrome " was

quite disturbing. It is sad to observe that after all these years,

misinformation and myths about chronic lyme are still so pervasive.

As someone who has improved tremendously on antibiotics for chronic

lyme infection (including major improvements in cognitive and other

neurological symptoms), I can personally attest to the fact that the

conclusions reached by the people who conducted this study are simply

wrong. The largest mistake made was the definition of long term

which is not consistent with what Lyme literate doctors would call

long term. In fact, some symptoms often worsen in the early stages

of treatment (not to mention that they didn't even finish the

trial!).The conclusions of this study and the many design flaws are

thoroughly analysed and put down at the International Lyme and

Related diseases society web site http://www.ilads.org ILADS are

made up of doctors, scientists, patient advocates, and lab people

dedicated to disseminating the truth about chronic lyme and common

tick born co-infections, and pulishing rebuttals to the virtual

onslaught of absurd, flawed studies, and thier conclusions, regularly

published in prominent medical journals. Unlike the publishers of

these studies, the doctors at Ilads ACTUALLY TREAT chronic lyme

patients. And they do get better! Please forward this to Dr.

Barclay. I realise that doctors cannot always explore the details of

a study to determine it's validity of design and conclusions, but

there are two drastically opposite views of this disease and both

should be explored before accepting the group that happens to be

ascendent. Besides, doctors who do not treat chronic lyme would not

likely be capable of designing a trial that could yeild improvement

in chronic patients, or properly questioning the validity of it's

design. (which was clearly the case here, though improvement was not

likely their aim as most of the studies from this camp are designed

to disprove the existence of chronic lyme and effective therapy in

the face of abundant evidence to to the contrary, including much

published).

Please consider running the other view of chronic lyme disease. I am

quite sure that someone from ILADS would be more than willing to

write one.

Edholm

[Guest guest]

> Hi: I'm still on no mail, but wanted to send this. I think it's

> important to let immunesupport.com know if you are disturbed by

this

> article. A whole lot of " CFS " patients read their newsletter

> searching for answers, and should not be exposed to this kind of

crap

> without seeing the other side of the coin. If not, they may be

> discouraged from pursuing a possible diagnosis of lyme or they

might

> disregard that borderline, or even positive, lyme test. If you go

to

> the article and click at the bottom of the page where it says

email

> us, you can write a quick note to the editor.

>

> E.

> Dear :

I hope you pick up this message, I was thrilled to see your post, As

I have tryed very hard to inform the FM and CFS communities that

there may be answers for them in the Lyme Disease information, I

Tryed to use the message boards in Immnesupport, however I did not

last a day on the boards before I was Kicked out by the moderator

for discussing Lyme Disease. Something is not right both medically

and politcally when answers whether right or wrong cannot be viewed

by people to form their own opinions. Thank you for your post.

Saxie

> The article " Antibiotics not effective in Post-Lyme syndrome " was

> quite disturbing. It is sad to observe that after all these

years,

> misinformation and myths about chronic lyme are still so

pervasive.

> As someone who has improved tremendously on antibiotics for

chronic

> lyme infection (including major improvements in cognitive and

other

> neurological symptoms), I can personally attest to the fact that

the

> conclusions reached by the people who conducted this study are

simply

> wrong. The largest mistake made was the definition of long term

> which is not consistent with what Lyme literate doctors would call

> long term. In fact, some symptoms often worsen in the early

stages

> of treatment (not to mention that they didn't even finish the

> trial!).The conclusions of this study and the many design flaws

are

> thoroughly analysed and put down at the International Lyme and

> Related diseases society web site http://www.ilads.org ILADS

are

> made up of doctors, scientists, patient advocates, and lab people

> dedicated to disseminating the truth about chronic lyme and common

> tick born co-infections, and pulishing rebuttals to the virtual

> onslaught of absurd, flawed studies, and thier conclusions,

regularly

> published in prominent medical journals. Unlike the publishers of

> these studies, the doctors at Ilads ACTUALLY TREAT chronic lyme

> patients. And they do get better! Please forward this to Dr.

> Barclay. I realise that doctors cannot always explore the details

of

> a study to determine it's validity of design and conclusions, but

> there are two drastically opposite views of this disease and both

> should be explored before accepting the group that happens to be

> ascendent. Besides, doctors who do not treat chronic lyme would

not

> likely be capable of designing a trial that could yeild

improvement

> in chronic patients, or properly questioning the validity of it's

> design. (which was clearly the case here, though improvement was

not

> likely their aim as most of the studies from this camp are

designed

> to disprove the existence of chronic lyme and effective therapy in

> the face of abundant evidence to to the contrary, including much

> published).

>

> Please consider running the other view of chronic lyme disease. I

am

> quite sure that someone from ILADS would be more than willing to

> write one.

>

> Edholm

[Guest guest]

Dear ,

I read this article as I had original dx's of CFS and FM and wondered

what they meant by Post-Lyme? Do they mean that the spirochetes area

all gone but you still have other problems. like some of our posters

here or do they mean late stage lymies?

I had 6 weeks of IV Rocephin last year and had no herxing or side

effects and am now on 500mg Ceftin 2/day with no herxing (just yeast

problems even though taking probiotics, caprylic acid and lots of

yogurt, still had to get some otc preparations). Nothing in between. I

am also working with borderline osteoporosis, borderline thyroid and

possible MS so I don't know which end is up but my pcp will dx a yeast

prep for me if I have to. Any suggestions?

Hugs, Michele

-----Original Message-----

From: and Tamara Sent: Monday, July 28, 2003 1:35 PM

Hi: I'm still on no mail, but wanted to send this. I think it's

important to let immunesupport.com know if you are disturbed by this

article. A whole lot of " CFS " patients read their newsletter

searching for answers, and should not be exposed to this kind of crap

without seeing the other side of the coin. If not, they may be

discouraged from pursuing a possible diagnosis of lyme or they might

disregard that borderline, or even positive, lyme test. If you go to

the article and click at the bottom of the page where it says email

us, you can write a quick note to the editor.

[Guest guest]

Commercial yogurt, including the plain, has a lot of sugar in it. Sugar feeds

yeast. Rita

RE: [ ] letter to editor at immunesupport.com

Dear ,

I read this article as I had original dx's of CFS and FM and wondered

what they meant by Post-Lyme? Do they mean that the spirochetes area

all gone but you still have other problems. like some of our posters

here or do they mean late stage lymies?

I had 6 weeks of IV Rocephin last year and had no herxing or side

effects and am now on 500mg Ceftin 2/day with no herxing (just yeast

problems even though taking probiotics, caprylic acid and lots of

yogurt, still had to get some otc preparations). Nothing in between. I

am also working with borderline osteoporosis, borderline thyroid and

possible MS so I don't know which end is up but my pcp will dx a yeast

prep for me if I have to. Any suggestions?

Hugs, Michele

-----Original Message-----

From: and Tamara Sent: Monday, July 28, 2003 1:35 PM

Hi: I'm still on no mail, but wanted to send this. I think it's

important to let immunesupport.com know if you are disturbed by this

article. A whole lot of " CFS " patients read their newsletter

searching for answers, and should not be exposed to this kind of crap

without seeing the other side of the coin. If not, they may be

discouraged from pursuing a possible diagnosis of lyme or they might

disregard that borderline, or even positive, lyme test. If you go to

the article and click at the bottom of the page where it says email

us, you can write a quick note to the editor.

[Guest guest]

> Commercial yogurt, including the plain, has a lot of sugar in it.

Sugar feeds yeast. Rita

> RE: [ ] letter to editor at immunesupport.com

>

>

> Dear Michele,

There probably is no such syndrome as POST LYME but rather chronic

Lyme Disease. Spirochetes are smart little buggers because they

have the ability to change form. They go from adult spirochetes to

cysts and the cysts are more resistant to antibiotics. Thats why

when you are on antibiotics you may feel better but as soon as you

stop them, the cysts turn back into adult spirochetes and wreak

havoc. THe fact that you have thyroid problems is consistent with

chronic lyme disease. Many people develop an autoimmune form called

Hashimotos thyroiditis. THis can present as either hyperthyroid or

hypothyroid. The current theory is that spirochetes have a peculiar

affinity for thyroid tissue. I suggest that you see a lyme literate

doc ASAP. Also your MS diagnosis is very suspicious. Untreated

Lyme disease can go to the brain and the spriochetes begin to lodge

themselves in the myelin sheath around neurons. On a typical MRI

this appears very similar to MS in the form of lesions in the white

matter. You need to have a Brain SPECT scan done to help rule out

MS. My docs are in CT, Dr. Sabovic and Dr. Marra. They would be

able to help you with these problems. Call 203-226-4167. Good Luck.

[Guest guest]

In a message dated 7/31/2003 4:19:45 PM Eastern Standard Time,

saxi727@... writes:

> THe fact that you have thyroid problems is consistent with

> chronic lyme disease.

How can you tell?? Do the Thyroid Test. Have a thermometer by your

beside, shaken down already below 97 degrees. Upon awakening, IMMEDIATELY before

moving, put the thermometer in your armpit for 10 mins. and take the reading.

Do this for 5 nights and then average it. If your average is under 97.4, you

are probably having thyroid problems. What can you do if you do have thyroid

problems??

Nutrition.

This can be helped with thyroid protomorphogen and unsaturated fatty acid

products with iodine.

If you would like more info, contact me @ suemassie45@...

Sue Massie, CNHP

Nature's Garden of Health

732 933-4011

[Guest guest]

In a message dated 7/31/2003 4:19:45 PM Eastern Standard Time,

saxi727@... writes:

> Also your MS diagnosis is very suspicious. Untreated

> Lyme disease can go to the brain and the spriochetes begin to lodge

> themselves in the myelin sheath around neurons. On a typical MRI

> this appears very similar to MS in the form of lesions in the white

> matter.

A spect scan is NOT going to confirm a diagnosis of lyme. There is NO 100%

test for MS.... which is caused by lyme to begin with.

" Many patients are told that they have Multiple Sclerosis (MS) because of

brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or

myelin basic protein (MBP). The medical literature is quite emphatic that MRI

does not reliably distinguish between MS an LD because there is too much overlap

in their supposedly distinct appearance and location of plaques. Plaques have

been detected with both disorders in the brain and spinal cord. OCB's and MBP

are non-specific markers for demyelination (loss of sheath around nerves) and

do not signify a cause of the demyelination. In Miklossy's study above,

senile plaques stained avidly for Bb spirochetes. Marshall reviewed the

MD

literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion

that LD is causing MS! His survey revealed that multiple studies prior to

1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by

inoculation into animals and on silver stain of CNS tissues). Dr. Coyle has

documented the presence of antibodies to Bb in MS patients (Neurology Vol.

39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of

LD.

Both MS and LD are associated with sinusitis (Lancet, 1986). Dr. Leigner has

reported a case of LD which fulfilled all criteria for MS. The epidemiology of

MS and the geographic distribution parallels that of LD. The symptoms of both

LD and MS can be aggravated if the patient takes a hot bath. Anecdotally,

patients with LD, who previously had been identified as MS, responded to

antibiotic

therapy. "

PLEASE READ <A

HREF= " http://www.cassia.org/essay.htm " >http://www.cassia.org/essay.htm</A>

to understand lyme a

little better.

sue massie, CNHP

Nature's Garden of Health

[Guest guest]

> In a message dated 7/31/2003 4:19:45 PM Eastern Standard Time,

> saxi727@y... writes:

>

> > Also your MS diagnosis is very suspicious. Untreated

> > Lyme disease can go to the brain and the spriochetes begin to

lodge

> > themselves in the myelin sheath around neurons. On a typical

MRI

> > this appears very similar to MS in the form of lesions in the

white

> > matter.

>

> A spect scan is NOT going to confirm a diagnosis of lyme. There is

NO 100%

> test for MS.... which is caused by lyme to begin with.

>

>

TO all who are concerned about MS and Lyme Disease. There is

significant scientific evidence to suggest that there may be more

than one etiology for the rise in MS, especially in the northern

Pacific states such as Washington, Oregon, and even Montana. In an

article by Dr. Pachner in Neurology 1990, Borrelia infection in the

brain is very difficult to detect and has been cultured from the CSF

in about 10% of patients with neurological involvement.

Additionally, in an article written by Fallon, MD Director of

the Lyme Research Unit at Columbia University there is no specific

way to demonstrate brain involvement in Lyme Disease because often

the soft neurological signs of poor memory, attention deficit,

etc... are not noted on neurological psych testing, or MRI.

Additionally, it is noteworthy that many Lyme patients in his study

did not have clinical evidence of focal CNS disease as measured by

24 hour EEG. CSF studies were often normal even in the presence of

notable neurological signs. Lyme disease needs to be addressed

through examination of such factors as severity of illness, extent

of pain, degree of disability, nonconcomitant central neurological

symptoms or signs, psychodynamic factors, socioeconomic factors, and

family pesonal history of psychiatric illness. Brain imaging

studies (SPECT) or positron emission tomography looking for evidence

of metabolic dysfunction is perhaps the best way to document the

parasitizing behavior of Borrelia who can not synthesize their own

fatty acids and must use that of the hosts. Myelin, the substance

which encases neurons, is primarily made of fatty acids.

Additionally, MS is usually accompanied by inflammatory markers

unlike Lyme Disease where you very rarely find elevated CRP or SED

rate. The pain is infectious and not inflammatory. To date there

is no reason to suspect that MS and Lyme aren't 2 separate

diseases. This is not to say that Lyme can't cause MS like symptoms

but there are many roads to OZ, not just the Yellow Brick road.

That happens to be the most highly traveled road, but not the ONLY

road.

[Guest guest]

Elevated sed rate is sx of Lyme. I know several LLMDs who believe MS and Lyme

are one and the same. Rita

[ ] Re: letter to editor at immunesupport.com

> In a message dated 7/31/2003 4:19:45 PM Eastern Standard Time,

> saxi727@y... writes:

>

> > Also your MS diagnosis is very suspicious. Untreated

> > Lyme disease can go to the brain and the spriochetes begin to

lodge

> > themselves in the myelin sheath around neurons. On a typical

MRI

> > this appears very similar to MS in the form of lesions in the

white

> > matter.

>

> A spect scan is NOT going to confirm a diagnosis of lyme. There is

NO 100%

> test for MS.... which is caused by lyme to begin with.

>

>

TO all who are concerned about MS and Lyme Disease. There is

significant scientific evidence to suggest that there may be more

than one etiology for the rise in MS, especially in the northern

Pacific states such as Washington, Oregon, and even Montana. In an

article by Dr. Pachner in Neurology 1990, Borrelia infection in the

brain is very difficult to detect and has been cultured from the CSF

in about 10% of patients with neurological involvement.

Additionally, in an article written by Fallon, MD Director of

the Lyme Research Unit at Columbia University there is no specific

way to demonstrate brain involvement in Lyme Disease because often

the soft neurological signs of poor memory, attention deficit,

etc... are not noted on neurological psych testing, or MRI.

Additionally, it is noteworthy that many Lyme patients in his study

did not have clinical evidence of focal CNS disease as measured by

24 hour EEG. CSF studies were often normal even in the presence of

notable neurological signs. Lyme disease needs to be addressed

through examination of such factors as severity of illness, extent

of pain, degree of disability, nonconcomitant central neurological

symptoms or signs, psychodynamic factors, socioeconomic factors, and

family pesonal history of psychiatric illness. Brain imaging

studies (SPECT) or positron emission tomography looking for evidence

of metabolic dysfunction is perhaps the best way to document the

parasitizing behavior of Borrelia who can not synthesize their own

fatty acids and must use that of the hosts. Myelin, the substance

which encases neurons, is primarily made of fatty acids.

Additionally, MS is usually accompanied by inflammatory markers

unlike Lyme Disease where you very rarely find elevated CRP or SED

rate. The pain is infectious and not inflammatory. To date there

is no reason to suspect that MS and Lyme aren't 2 separate

diseases. This is not to say that Lyme can't cause MS like symptoms

but there are many roads to OZ, not just the Yellow Brick road.

That happens to be the most highly traveled road, but not the ONLY

road.

[Guest guest]

Those of you who believe MS is Lyme. Are you the same people who believe CFS is

Lyme? So what about those of us who do not fit the criteria for MS. Then we

can't have Lyme either?

And if high SED rate is sx of Lyme, then most people with CFS can't have lyme as

most of us have low sed rate.

Thanks,

Doris

----- Original Message -----

From: Marie

Elevated sed rate is sx of Lyme. I know several LLMDs who believe MS and Lyme

are one and the same.

[Guest guest]

A sed rate is sx of Lyme but it, like every other Lyme sx, isn't necessary to

have a Lyme dx. You're not being evaluated by LLMDs. Not fitting the criteria

for MS... again, you're not being evaluated by LLMDs who know there are (my

words) 1000 sx of Lyme, 100 are current, and one or two knock you on your butt.

You have the sx nonLLMDs put with a certain disease. If they're not LL nothing

they say is relevant to Lyme. Certain sx are placed with MS and certain sx are

placed with CFS but almost no one has Lyme. The Lyme tests are worthless. The

doctors who patent these tests are making millions (see Conflicts of Interest

Report in the upper right at www.lymediseaseassociation.org ) off of tests that

check for very few of the bands out of 300 or check for an immune response that

isn't measurable yet. Last I knew some labs were checking for European

strains...strains that aren't supposed to be in America. Dangerous vaccines that

were based on the faulty science of those tests are off the market, not because

there was low sales but because people's lives were ruined. SK was given the

science and knows (now) that it was faulty. If they're not LL, nothing they say

is relevant to Lyme. Rita

Re: [ ] Re: letter to editor at immunesupport.com

Those of you who believe MS is Lyme. Are you the same people who believe CFS

is Lyme? So what about those of us who do not fit the criteria for MS. Then we

can't have Lyme either?

And if high SED rate is sx of Lyme, then most people with CFS can't have lyme

as most of us have low sed rate.

Thanks,

Doris

----- Original Message -----

From: Marie

Elevated sed rate is sx of Lyme. I know several LLMDs who believe MS and

Lyme are one and the same.

[Guest guest]

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