Lyme

[Guest guest]

Thank you for writing about this to me. What do you mean when you say

titer for Lymes shows it must be recent? What test is that? Should I

get that one too? I only got the LUAT by Igenex, that one doesn't say

anything about it being recent or a past infection. Did you get the

LUAT test? JL

KB46@... wrote:

>

> From: KB46@...

>

> This spring I was diagnosed with having lyme too. My doc thinks that I got

> that on top of CFS, since the titers on the test showed that it was a more

> recent infection and I've been sick with CFS for three years.

>

> I've been taking doxycycline for about two and a half months and zithromax

> for a couple of weeks. I feel worse on the antibiotics than I felt before I

> started them, especially since the zithromax was added. I'm not having any

> traditional side effects, I think I might be having a Herximer reaction, not

> sure, going to have to research that one.

>

> Uggh.

> Barb

>

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

> Campaign 2000 is here!

>

> Discuss your thoughts; get informed at ONElist. See our homepage.

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

> 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]

This spring I was diagnosed with having lyme too. My doc thinks that I got

that on top of CFS, since the titers on the test showed that it was a more

recent infection and I've been sick with CFS for three years.

I've been taking doxycycline for about two and a half months and zithromax

for a couple of weeks. I feel worse on the antibiotics than I felt before I

started them, especially since the zithromax was added. I'm not having any

traditional side effects, I think I might be having a Herximer reaction, not

sure, going to have to research that one.

Uggh.

Barb

[Guest guest]

> De : on <jamesinspace@...>

> Répondre à : egroups

> Date : Tue, 2 May 2000 08:14:20 -0700 (PDT)

> À : egroups

> Objet : Lyme

>

> My lyme test was sent to the Lyme Unit at Southampton

> where it tested negative on ELISA and Immunoblot.

>

> The LUAT test is controversial. What about Bowen and

> Mattman test? A picture of the bug - no cross

> reactions possible, mistaken identities? Can Bowen or

> Mattman deduce an active infection? Is this

> distinction relevent?

>

> I developed a swollen rash from an unidentified insect

> bite in Nepal. But Dr O'Connor told me there are no

> ticks for lyme in Nepal and said the rash took weeks

> to appear (others say few days to weeks). In her

> opinion sero negative lyme is extremely rare and she

> would only consider it if there was a definate risk of

> exposure. Regarding further testing she was concerned

> about false positives and side effects of long term

> treatment of lyme.

Her " opinion " is the EUCALB guidelines, and I have met some of the most

influencial members of this organisation and they are blockheads, whose main

concerns are not helping people but playing down lyme and retarding the time

when they will inevitably look dumb, when the European rate of infection for

Bb finally becomes known. At the moment the only pb there seem to be in

Europe is the so)called huge percentage of false positives.

I'm tired of repeating the same thing so could you save messages, and also

could you please, for your sake, stop trusting what your parrot doctor says.

I know some people can't cut the cord, but please, , remember YOU have

to feed them info, not the other way round!

Nelly

She considered 600mg doxy to be

> ludicrously high. The formaulary doses are 100mg,

> 100mg BD, or 200mg one dose at the most. Otherwise

> there is risk of kidney damage. My kidneys are crap

> already. This is just to give you the establishment

> British perspective on lyme, she said that she shared

> the concerns of the US authorities over the

> misdiagnosis of lyme.

>

>

>

> =====

> on in Hampshire, England.

> jamesinspace@...

>

> __________________________________________________

>

[Guest guest]

-

I've used the TF for Lyme, along with anti-biotic

therapy for four months (200mg daily of doxycycline).

I felt much better while I was using these. My pain

decreased and my energy levels improved. Now I'm off

of both and not feeling very well, so I don't know if

I stopped too soon. I do think both of these helped

me significantly although I've also experienced

improvement from supplements like Moducare, CoQ10, and

NADH, along with drugs like metoprolol and celexa for

my CFS symptoms.

Best, Jennie F.

--- paleotechnics@... wrote:

> I heard that there

> was a Transfer Factor

> specific for lyme. Have you tried that?

> E.

>

>

__________________________________________________

[Guest guest]

According to what I've mostly read, 4 months of Doxy. is very probably

insufficient to wipe out lyme. Especially oral, and I think 200 mg. is

a small dose, but don't quote me on any of that. I just recieved some

interesting info on Lyme and BVT There are people out there using BVT on

lots of Lyme patients, treatment protocols, etc... I'll try to post

what I can soon.

E.

[Guest guest]

has everyone had a lyme test ? what other illness

should we have ruled out if we have cfs? my reg doc

says im fine. i had a mri they found some white

spots. thats all i had done should i have any other

test done and what kind of doc should do them/?

--- paleotechnics@... wrote:

> According to what I've mostly read, 4 months of

> Doxy. is very probably

> insufficient to wipe out lyme. Especially oral, and

> I think 200 mg. is

> a small dose, but don't quote me on any of that. I

> just recieved some

> interesting info on Lyme and BVT There are people

> out there using BVT on

> lots of Lyme patients, treatment protocols, etc...

> I'll try to post

> what I can soon.

> E.

>

>

> 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]

how bad is the antibitic therapy I thought they say

that this causes cfs?

--- Jennie Floyd <jfloyd123@...> wrote:

> -

>

> I've used the TF for Lyme, along with anti-biotic

> therapy for four months (200mg daily of

> doxycycline).

> I felt much better while I was using these. My pain

> decreased and my energy levels improved. Now I'm

> off

> of both and not feeling very well, so I don't know

> if

> I stopped too soon. I do think both of these helped

> me significantly although I've also experienced

> improvement from supplements like Moducare, CoQ10,

> and

> NADH, along with drugs like metoprolol and celexa

> for

> my CFS symptoms.

>

> Best, Jennie F.

>

> --- paleotechnics@... wrote:

> > I heard that there

> > was a Transfer Factor

> > specific for lyme. Have you tried that?

> > E.

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I've never heard that antibiotic therapy causes CFS!

I thought it was a treatment for CFS. Anyway, it

helped me feel better when I was on it.

Jennie

--- michelle cervera <cuteangel54321@...> wrote:

> how bad is the antibitic therapy I thought they say

> that this causes cfs?

> --- Jennie Floyd <jfloyd123@...> wrote:

> > I've used the TF for Lyme, along with anti-biotic

> > therapy for four months (200mg daily of

> > doxycycline).

> > I felt much better while I was using these. My

> pain

> > decreased and my energy levels improved. Now I'm

> > off

> > of both and not feeling very well, so I don't know

> > if

> > I stopped too soon.

__________________________________________________

[Guest guest]

where can i find a good lyme doc in connecticut that

will do the right testing?--- " C.Tab. " <tab@...>

wrote:

> Hi,

>

> I agree testing takes back seat to clinical dx. I

> also have been positive

> on LUAT several years bac and again last year. My

> LLMD (lyme literate MD)

> says he has never seen a false positive with LUAT.

> Are you being treated

> antibotics now to see if there is improvement?

> There is a good lyme list on

> egroups with tons of info, support, and political

> activism (good stuff'-)).

> The address is http://www.lyme-aidegroups.

> Good luck, Chrisite

>

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

> >(steven)Good question. www.Igenex.com has a few

> articles on

> >understanding lyme testing (if you aren't too

> brainfogged to understand

> >them! Not light reading for sure) Igenex does a

> wide variety of tests

> >for Borrellia and other tick borne diseases. I

> chose the LUAT (lyme

> >urine antigen test) in which you preferably take

> antibiotics for a few

> >days before or while taking urine samples. It is

> thought by them to be

> >about (I think, look it up to be sure) 80%

> positivity rate when three

> >samples are tested- with the antibiotic challenge.

> Mine were all

> >negative. I did however show a past infection with

> Erlichiosis an

> >organism commonly coinfecting with lyme.

> > PCR is the other one I would like to do (besides

> mattman) But it too

> >has to be done a lot of times, and is expensive

> (about 179.00 a sample).

> >If I had insurance and could get the tests for free

> I'd keep giving

> >samples. That's not the case, so I'm waiting for

> something to happen.

> > I don't believe that any test, or amount of

> testing, is sufficient to

> >rule out lyme completely. This at least is what

> the " experts " that I

> >choose to believe say.

>

>

> 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 Peggy -

I have had severe joint and muscle pain since I got

Lyme in 1993 (I think that was when I got it). Pain

has been my worst symptom over the years. It is

improving now that I've been treated with antibiotics

- I'm also taking Plaquenil now and that has really

helped the pain.

Jennie

> Do all of the Lyme people on the list have joint and

> pain type symptoms? I

> do not have the classic symptomatology for Lyme, so

> I always figured it

> wasn't worth pursuing too intensely (though I did

> just get a PCR test; still

> waiting for results). As far as illness

> presentation, I seem to be pretty

> classically a CFIDS patient. I am just curious if

> the symptoms profiles of

> the Lyme people who thought they had CFIDS is the

> same as mine.

>

> Peggy

>

__________________________________________________

[Guest guest]

[bMFB] I am sorry to hear you are so disabled. If I had done ABX for four

years without huge progress I would conclude that they don't work. It does

not take four years to kill everything even if that theory were true. But I

don't think it is. I have had liver damage from anti-boitics so won't go

there. I have had the experience of getting reved up on ABX at first, but it

was just exciting my adrenals, not real energy. If I were you I would try a

different theory and approach: toxicity is the problem as caused by

dentistry, medicine and industry. Nutirion and super supplements like alpha

lipoic acid have made the difference for me, after mercury amalgam removal.

I have made lots of progress, can go dancing, people say I look great.

[bMFB]

ps and yes have been through whole iv abx route...4

years later still go on them occasionally and am

completly disabled, but I think I am worse case

scenario. Many do get better, and I did too at first.

But I think I have other bugs within me.

__________________________________________________

[Guest guest]

Doris, , , Peggy and others ...

I agree with what you guys have written. Chronic Lyme is complicated, very

complicated. Firstly, it is one of those " imitative " diseases where

essentially you can get any of an enormous number of symptoms, or only some

of them. There is a list of symptoms at

http://www.xpressnet.com/bhealthy/symptoms.html

and there are many others. Don't expect to have all of them. My para

under diagnosis suggests one way of helping to separate Lyme from other

forms of CFS. Doesn't rule out mycoplasmas or rickettsias or other

infections though.

Secondly, it is much muddied by the probablility of coinfections. Because

ticks carry lots of possible pathogens, and because one or more of them

including borrellia stuff around with the immune system, you are more

likely to be vulnerable to these other pathogens than someone who doesn't

have the first infection.

Third, testing is hopelessly unreliable. A large proportion of negatives

are false, and a sizable proportion of positives are false. So don't rely

on blood tests of any type at the moment. And don't let people bully you

as a result of them. The diagnosis of Chronic Lyme is based on signs and

symptoms. If you are " lucky " enough to have had the characteristic (highly

variable, but characteristic) rash, then you have a fair diagnosis from

that. If you are one of the many who didn't get a rash, then you just have

to wade through the symptoms and exclude other possiblities.

DIAGNOSIS

One BIG clue that I can't emphasise enough is to see whether you react to a

range of antibiotics. If you react (herx) to doxy or other suitable abx

then you clearly have something - an infection. Given that Lyme is so

variable and mysterious and there is a high probability of co-infections,

the only thing that makes any sense to me from there is to treat your

condition as an infection, a heavy duty infection, and an assumption of

Lyme is probably a good way to go as it is one of the most resistant to

treatment.

I don't think I know anyone who has been cured of long term Lyme either, so

it is not a rosy outlook at the moment.

n

> Does anyone think that

>late-stage Lyme diagnoses are just another red herring? Do any of the other

>Lyme people on this list have MCS and very little pain?

Yes, me. Although in the last year the pain has increased. I am very MCS,

and previously had very little pain.

>I lived in a place with Lyme disease when I got sick, and was even dating

>someone with Lyme then, so I have always thought about it, but tests have

>been negative thus far.

see above.

[Guest guest]

Hi

Thank you for answering. The problem is it is one thing to say that if you

respond to antibiotics then you have Lyme. But that is not so simple. I

definitely responded to antibiotics and they helped me. I have been lucky

enough to find a doctor who gave me antibiotics for at least 2 years, even

though I didn't have any postitive test. But even he is starting to balk

about refilling the antibiotics without a test. And as inaccurate as

testing is (my lyme test was negative but who knows how good it was), it is

even more inaccurate when you have been on antibiotics for a long time. I

am talking about lyme and other bacteria like mycoplasma and chlamydia here.

Also, the website you reference says " any 7 of these symptoms " and of course

everyone with CFS has 7 of these symptoms. So it is not much use if you

can't get accurate tests. And I personally have never heard of anyone with

lyme that didn't have joint pain. So is it really possible to have lyme

instead of CFS if you don't have joint pain, or are there some of the

symptoms that typically point to lyme over something else?

Thanks,

Doris

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

> I agree with what you guys have written. Chronic Lyme is complicated, very

> complicated. Firstly, it is one of those " imitative " diseases where

> essentially you can get any of an enormous number of symptoms, or only

some

> of them. There is a list of symptoms at

> http://www.xpressnet.com/bhealthy/symptoms.html

> and there are many others. Don't expect to have all of them. My para

> under diagnosis suggests one way of helping to separate Lyme from other

> forms of CFS. Doesn't rule out mycoplasmas or rickettsias or other

> infections though.

[Guest guest]

Doris and All who are taking antibiotics,

Do you have joint pain as part of your symptoms? Also, did you feel

more tired when taking abx? Can tiredness be classified as herx

reaction?

I am going to a LLMD and he thinks I have lyme, western blot showed

only a few bands.

I did mention to him that I dont have any kind of pain which most

lyme patients exhibit. I just feel achy and sore in the muscles when

I exert a little bit (cooking while standing is an exertion for me).

My main symptoms are extreme muscle weakness, fatigue, extreme

cognitive difficulties, poor feeling of wellbeing, being wired all

the time etc etc.

But still, I thought I will give the antibiotics route a try. After

6 months of trying, i am not sure if I can attribute the little bit

of improvement that I am having to antibiotics. It is more due to

some of teh supplements I am taking and ample rest. I am thinking of

trying the antibiotics for one more year and stopping it if that

doesn't help me out.

Sometimes, I regret starting the abx since it makes me feel more

toxic and exhausted which again my LLMD attributes to die-off. I am

thinking probably I cant handle antibiotics and thats why I feel

more tired when taking them. There is so much confusion w.r.t lyme.

I would like to know the symptoms of folks in this list who think

they have lyme or undergoing/underwent treatment for lyme. That will

be really helpfull.

Thanks a lot

Gayathri.

> Hi

>

> Also, the website you reference says " any 7 of these symptoms " and

of course

> everyone with CFS has 7 of these symptoms. So it is not much use

if you

> can't get accurate tests. And I personally have never heard of

anyone with

> lyme that didn't have joint pain. So is it really possible to

have lyme

> instead of CFS if you don't have joint pain, or are there some of

the

> symptoms that typically point to lyme over something else?

> Thanks,

> Doris

[Guest guest]

I had major herx reactions from antibiotics at the beginning, but I assume

it is from something like mycoplasma and not lyme. One reason I don't think

I have lyme is that I never had any joint pain. Tiredness can be part of a

herxeimer. In my case it was much more extreme though, headaches and flu

symptoms.

Thanks,

Doris

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

> Do you have joint pain as part of your symptoms? Also, did you feel

> more tired when taking abx? Can tiredness be classified as herx

> reaction?

[Guest guest]

I was wondering if living with CFS may in long term, cause Lupus,MS or

alzheimer's ?Any records about that?

Thanks.

Nil

Lyme

| Just thought I'd add my two cents. I have CFIDS, not Lyme. It was

| ruled out. So, all people with CFIDS do not necessarily have Lyme. I'm

| sure though that a lot of people are misdiagnosed.

|

| Where I used to live, we had a girl in our CFIDS support group for

| years. Turns out she actually had Lupus. Hers was a somewhat atypical

| case, hence the trouble with getting a proper diagnosis for so long. I

| have heard of others being misdiagnosed with CFIDS when they actually

| had Lupus. The ANA test is not always reliable, obviously.

[Guest guest]

Hello,

I tested positive for Babesia by way of PCR. I also tested positive for IgG

Western Blot for Lyme and for IgM Western Blot I test Equivical(whatever that

means).

On the multiplex PCR for Lyme I tested positive for Plasmid but not Genomic.

Don't know what this means either.

I have also tested positive for DS-Anti-DNA (lupus)...but got checked again a

year later and it was negative.

I hear that the western blot can be positive if you have any autoimmune

tendencies..as you see I must have these tendencies (above positive test).

ALso, I don't have the typical symptom of joint pain and muscle pain/twitches

that come with Lyme so my dr. doesn't know if we should take these test

seriously.

Any comments would be welcomed. I am just now starting to think that maybe I

should try treating myself for Lyme...but maybe they were/are false

positives???

[Guest guest]

Hi

A UK book called ME by Anne Mackintyre says that a small percentage of people

with CFS/ME go on to develop Lupus or Rheumatoid Arthritis

I have a low positive ANA which means that I am making antibodies to myself but

I have no symptoms of Lupus and neither is it believed that I have lupus but who

knows?

But then again it is not that uncommon for people with ME/CFS to have a low

positive ANA

Also a positive ANA is not enough to diagnose Lupus - there are a few other

tests that need to be done too and in the end I think that some people with

Lupus don't have any positive tests but are diagnosed on a clinical basis.

Lyme

| Just thought I'd add my two cents. I have CFIDS, not Lyme. It was

| ruled out. So, all people with CFIDS do not necessarily have Lyme. I'm

| sure though that a lot of people are misdiagnosed.

|

| Where I used to live, we had a girl in our CFIDS support group for

| years. Turns out she actually had Lupus. Hers was a somewhat atypical

| case, hence the trouble with getting a proper diagnosis for so long. I

| have heard of others being misdiagnosed with CFIDS when they actually

| had Lupus. The ANA test is not always reliable, obviously.

[Guest guest]

Nil wrote:

>

> I was wondering if living with CFS may in long term, cause Lupus,MS or

> alzheimer's ?Any records about that?

I've never seen or read anything to indicate that's true. The girl I

was talking about never fit the case definition for CFIDS, but no one

could prove she had something else until her ANA *finally* turned

positive. It was *suspected* she had Lupus.

Teewinot

@>--}-- * --{--<@

Teewinot13@...

[Guest guest]

jseaton357@... wrote:

> JS: Yeah, glad someone here told me to get an ANA done as I had no idea what

> it was before they told me, so ruled that out as well. As for your above

> statement since you said you had lyme ruled out did that mean you went to a

> LLMD and they said you definitely didn't have it? Out of all the old school

> CFS club I think Cheneymeister is probably tops, maybe not in terms of money

> spent as I give him a low rating on ultimate value, but even he missed a

> couple Cheney patients I know of who are now diagnosed as lyme. That's why I

> preach LLMD b/c it is just that important that one goes to them to rule it

> out.

I was tested for Lyme by a number of different methods, and it was ruled

out. It never really suspected anyway, since my illness was caused by

toxic chemical exposure. No one ever really suspected anything else,

but they just did the prudent thing and ruled out all sorts of stuff.

With the proper treatment for me, I've improved quite a lot.

Teewinot

@>--}-- * --{--<@

Teewinot13@...

[Guest guest]

http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html

this is an excellent article that debunks many Lyme myths. NO wonder everybody

tests postitive, it can be picking up many different things, even H Pylori!

This is long, but explains a lot.

Marcia

[Guest guest]

Marcia,

Quackwatch in itself is a quack. It's sole purpose is to run around internet

groups, find obscure studies that support its position, which is always

against any type of alternative medicine. It goes after LLMD's, dentists who

remove amalgam fillings or do cavitation work, docs who do chelation....you

name it. I've seen their mess on all of my mercury/amalgam/heavy metals

lists...a few years ago their then medical doctor lost his license to

practice because he himself was deemed a quack - I believe they called it

medical malpractice. Just wanted to make sure that when people read this

article, that they realize the nature and purpose of the organization that

has posted it.

Donna in NC

Re: Lyme

http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html

>

> this is an excellent article that debunks many Lyme myths. NO wonder

everybody tests postitive, it can be picking up many different things, even

H Pylori! This is long, but explains a lot.

>

> Marcia

>

>

>

> 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]

I personally wouldn't believe anything from the Quackwatch site. I read a bunch

of things a while back that they are funded by drug companies and such. I don't

know whether to believe that, or give Quackwatch the benefit of the doubt and

say they are trying to help but are just misguided... but in the past they have

" debunked " chronic fatigue syndrome, although I don't see that on their web site

now. I do see they are still " debunking " MCS and mercury poisoning and other

things that we know to be true.

Thanks,

Doris

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

From: Marcia

http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html

this is an excellent article that debunks many Lyme myths. NO wonder everybody

tests postitive, it can be picking up many different things, even H Pylori!

This is long, but explains a lot.

[Guest guest]

A lot of my clients have or have had Lymes, Call me and I'll share my experience.

A Crawford HHC

(518)828-5582

@...

Ann & Rob Riner wrote:

Does anyone have a protocal

for Lymes? A homoepathic, extra vitamins or herbs?

Thanks

Ann

riners@...

............................................

[Guest guest]

One remedy doesn't always work for everyone.. In observing a bioresonance

practitioner treat Lyme's, each individual tests positively

for different things. The immune system must be boosted and the organs

supported. One product that works well for many is

Semento (drops of Cat's Claw). is Rotella, M.Ac.

> Does anyone have a protocal for Lymes? A homoepathic, extra vitamins or

herbs?

> Thanks

> Ann

> riners@c...