Preparing For ELISA test. Do I Stop Herbs?

[Guest guest]

Hi All,

First let me say that I live in Canada and was dxd with MS in 2004 because of

lesions on my brain. There are no llmds here and as they say " everyone is a

skeptic " in the medical community with respect to Lyme disease. I have been

badgering my family Dr with my lyme requests since my MS dxs. She has readily

obliged me when she was legally able to.

I had neg results on 2 Canadian Bb ELISA tests done a few years ago in Alberta

(by the MS Dr at my request). That was before I started taking any herbs or abx.

I started Buhner herbs Jan, 2009. I added minocycline 2xs daily in November 2009

(without my Drs consent.. she doesn't know).

In Dec, 2009 I decided to send my blood to Igenex so I stopped abx and herbs for

2 weeks prior to being tested. Within these 2 weeks of stopping the meds my

condition slipped back into the abyss (disoriention, brain fog, memory loss

etc). I had girly problems too. Really bad things happened. It took over a month

to semi-recover. I swore I wasn't going to do that again but lol.

I got positive results by CDC criteria with Igenex with western blot (IgG:5+

bands, IgM:1+, 1[ind]). My Dr saw the results and believes I have Lyme disease

but she is afraid of losing her licence if she treats me. She is aware of the

situation with Dr M of BC Canada. She tried to send me to an infectious Dr who

said that Igenex is notoriuos for false positives so he wouldnt see me. My Dr's

solution to this dilemna is to have me tested by ELISA again in Alberta with a

positive result. Noooo....

I stopped taking the abx but am unsure of whether a person really needs to stop

taking the herbs. I am taking knotweed, andro, siberian ginseng, cats claw and a

bit of red root. It seems to me that these herbs are immune stimulating and that

should be a good thing when checking for the production of antibodies shouldn't

it?

And I am also wondering how long I need to be off of abx (and herbs if

necessary) before I get tested?

Any Ideas or imput would be greatly appreciated.

Thanks and Take Care,

Chris

[Guest guest]

Hi,

The ELISA test for lyme is really not worth getting it, it has many false

negatives. If you are positive on Western Blot then that should be enough.

See the www.ILADS.org website for more information or look in the \testing

folder on my free lyme resource CD.

Keep in mind that many people have been able to get their lyme in remission

using natural remedies on themselves. My cd has a lot information that I

have captured over the last 3 years about that.

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

[ ] Preparing For ELISA test. Do I Stop Herbs?

Hi All,

First let me say that I live in Canada and was dxd with MS in 2004 because

of lesions on my brain. There are no llmds here and as they say " everyone is

a skeptic " in the medical community with respect to Lyme disease. I have

been badgering my family Dr with my lyme requests since my MS dxs. She has

readily obliged me when she was legally able to.

I had neg results on 2 Canadian Bb ELISA tests done a few years ago in

Alberta (by the MS Dr at my request). That was before I started taking any

herbs or abx. I started Buhner herbs Jan, 2009. I added minocycline 2xs

daily in November 2009 (without my Drs consent.. she doesn't know).

In Dec, 2009 I decided to send my blood to Igenex so I stopped abx and herbs

for 2 weeks prior to being tested. Within these 2 weeks of stopping the meds

my condition slipped back into the abyss (disoriention, brain fog, memory

loss etc). I had girly problems too. Really bad things happened. It took

over a month to semi-recover. I swore I wasn't going to do that again but

lol.

I got positive results by CDC criteria with Igenex with western blot (IgG:5+

bands, IgM:1+, 1[ind]). My Dr saw the results and believes I have Lyme

disease but she is afraid of losing her licence if she treats me. She is

aware of the situation with Dr M of BC Canada. She tried to send me to an

infectious Dr who said that Igenex is notoriuos for false positives so he

wouldnt see me. My Dr's solution to this dilemna is to have me tested by

ELISA again in Alberta with a positive result. Noooo....

I stopped taking the abx but am unsure of whether a person really needs to

stop taking the herbs. I am taking knotweed, andro, siberian ginseng, cats

claw and a bit of red root. It seems to me that these herbs are immune

stimulating and that should be a good thing when checking for the production

of antibodies shouldn't it?

And I am also wondering how long I need to be off of abx (and herbs if

necessary) before I get tested?

Any Ideas or imput would be greatly appreciated.

Thanks and Take Care,

Chris

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

Buy Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its

Coinfections by Buhner at one of these locations:

http://tinyurl.com/3bgm5d

[Guest guest]

" If you are positive on Western Blot then that should be enough. "

True enough but thats not the way its done in Canada... at least not for me.

None of the many Drs I have gone to will accept a test result from Igenex... has

to be done in a Cdn lab and has to start ot with a positive ELISA.... which I

have failed twice already.

I would love to go to the states and get treated but that is pretty well

impossible financially. I am so ill, I was forced to quit working 4 years ago. I

am almost to the point where I sell my house and head to the states because in

the end if I become well enough to work I will be able to recoup my losses.. to

some point anyway. The problem is that I am a single parent with kids. My

youngest son has just turned 18 tho. Looks like he might have to fend for

himself soon.

I have been hopeful that somehow I will get treated here in Alberta but that

hope is fading with every year that passes.

As for the herbal treatments they have been helpful but unfortunately they are

not enough for me since I still have some major neurological problems. I am

quite sure that my case is one of chronic illness dating back some 20 years at

least, judging from when my knee arthritis began. And that brings up another

immense problem. My kids quite likely have lyme disease as well. They both have

the symptoms. This absolutely breaks my heart. If I can't get treated my kids

sure arent going to be able to get treated either. I figure I have to get

treated first, get back to work and then I can afford to get them treated too...

but thats another story.

And that brings me back to testing with ELISA and possibly having a positive

result. I decided I am going Friday (today) for the test. I stopped taking the

mino last Friday but am still taking the Buhner herbs and other supplements. I

guess I will find out soon whether it was a good idea or not...

Take Care,

Chris

[Guest guest]

> " If you are positive on Western Blot then that should be enough. "

>

> True enough but thats not the way its done in Canada... at least not for me.

None of the many Drs I have gone to will accept a test result from Igenex... has

to be done in a Cdn lab and has to start ot with a positive ELISA.... which I

have failed twice already.

I agree with what said about the value of and WBlot but yes, the

medical guidelines are often more important than scientific fact. In Netherlands

you are lucky to even get an test (even after tick byte and EM) and if it

comes up negative it seals the case, usually. Some of the Dutch labs have their

own Western Blots but most of them are unreliable just like (many false

negatives).

Desperate people here turn to German labs like Labor Koeln (similar to IgeneX in

the US). But even then, many MD's don't act on a positive result from this lab

because 'everybody tests positive there' (also similar to US situation ...). I

tested negative twice on , while my Western blot from Labor Koeln was IgM +

IgG positive with all the required bands ...

Donta claims that a large number of his chronic lyme patients have positive WB

and negative . I know many such examples from my area, all of them were

initially refused treatment based on a negative test.

> As for the herbal treatments they have been helpful but unfortunately they are

not enough for me since I still have some major neurological problems. I am

quite sure that my case is one of chronic illness dating back some 20 years at

least, judging from when my knee arthritis began.

Don't put all your hope on ABX ... just read the lymeforums in the US and

Europe, there are people who have been on high dose ABX for ten years or so and

who are still ill. If you have been ill for many years, I really doubt ABX will

cure everything. Of course, one keeps trying but I don't think there is a real

cure yet, and there won't be any within the near future thanks to the IDSA gang.

My guess from reading over a thousand research articles, polls etc. is that your

chances are mostly determined by fate: the exact Bb strain that you get, your

physical (+mental) condition and genetic makeup that determines how easy Bb can

infect and hide in your body and cause 'auto-immune' (cross-) reactions, etc. I

think that most of the people who fully recover from Lyme just happened to have

a mild or non-persistent Bb strain; the outcome of the treatment is hardly

dependent on the actual treatment but mostly on other factors.

> And that brings me back to testing with ELISA and possibly having a positive

result. I decided I am going Friday (today) for the test. I stopped taking the

mino last Friday but am still taking the Buhner herbs and other supplements. I

guess I will find out soon whether it was a good idea or not...

The antibiotics could influence the outcome. Some people turn positive in

after the first ABX course (I did ...), on the other side the ABX (especially

prolonged use) can dampen an existing immune reaction as well.

good luck with the test; anyway, if you get a positive result, does that mean

you definitely get treatment?

[Guest guest]

Hi,

I agree with Knotweed that lots of people are not getting much better using abx.

From looking thru the research I have noticed many things about abx failure...

in the studies anyway. I noticed that their choice of abx may not have been the

best. Most studies use one type of abx only and often treatment times are short.

In the case of MS (which I consider to be lyme with neurological involvement, in

my case anyway)studies have shown that 2 years of mino reduced brain lesions by

85% and almost completely resolved the symptoms as well. However relapses always

occured upon discontinuation of abx.

Since I have been checking my blood under the microscope I have noticed that my

white blood count was non existent until I started taking the herbs and

supplements and it dropped substantially when I stopped taking the herbs for the

western blot test.

It makes me think that possibly the low wbc may be one of the factors in why

some people are not seeing much benefit from the abx... just a thought. Perhaps

that is part of the problem. I have yet to see a study where more then one abx

was combined with herbs or diet for that matter.

Many people with chronic lyme have negative blood test results. Since those

tests are looking for antibodies made by our immune system wouldn't it make

sense that the reason we are getting negative results is because our immune

systems are in such bad shape?

I have been taking minocycline along with the Buhner herbs. Initially I saw some

improvements while taking the herbs but these improvements were mild. I have

been on these herbs for a year now. I gave them a chance. They are helpful and I

plan to continue taking them but I dont think that the herbs and supplements are

going to do it for me without adding something stronger to the mix. Maybe the

fact that I have been taking the Buhner herbs for a year before starting abx

will improve my outcome. I will test that theory and report back lol.

I lied like the ground to a Medi-Centre Dr and finally got some mino for my

non-existent pimples lol. I added mino to the mix in late November, a month

before I got the Igenex western blot done. I think that the addition of the mino

may have turned the negative into a positive and am hoping this happens again

with the ELISA. Last time I quit the mino for 2 and a half weeks prior but this

time I am just not strong enough to stop for that long and deal with the return

of the vertigo, dizziness and all the other symptoms that have finally left me

again.

With the mino I have seen major improvements... dizziness, vertigo, memory etc.

My vision seems to be improving and the brain fog seems to be somewhat better.

(I am also taking grapefruit seed extract for the biofilm). I don't like taking

the mino without a Dr's guidance due to the heart palputations and other side

effects that I am having. And I would like to add a few more meds in there to

try and kill any possible coinfections but if the Drs wont even see me for Lyme

disease I certainly wont get a chance to try anything else.

Take Care,

Chris

[Guest guest]

Hi

Are you referring to IV antibiotics or oral when you say they don't

work?

Thanks,

On Feb 12, 2010, at 4:40 PM, tnkrbell wrote:

>

>

> Hi,

> I agree with Knotweed that lots of people are not getting much

> better using abx. From looking thru the research I have noticed

> many things about abx failure... in the studies anyway. I noticed

> that their choice of abx may not have been the best. Most studies

> use one type of abx only and often treatment times are short. In

> the case of MS (which I consider to be lyme with neurological

> involvement, in my case anyway)studies have shown that 2 years of

> mino reduced brain lesions by 85% and almost completely resolved

> the symptoms as well. However relapses always occured upon

> discontinuation of abx.

>

> Since I have been checking my blood under the microscope I have

> noticed that my white blood count was non existent until I started

> taking the herbs and supplements and it dropped substantially when

> I stopped taking the herbs for the western blot test.

> It makes me think that possibly the low wbc may be one of the

> factors in why some people are not seeing much benefit from the

> abx... just a thought. Perhaps that is part of the problem. I have

> yet to see a study where more then one abx was combined with herbs

> or diet for that matter.

>

> Many people with chronic lyme have negative blood test results.

> Since those tests are looking for antibodies made by our immune

> system wouldn't it make sense that the reason we are getting

> negative results is because our immune systems are in such bad shape?

>

> I have been taking minocycline along with the Buhner herbs.

> Initially I saw some improvements while taking the herbs but these

> improvements were mild. I have been on these herbs for a year now.

> I gave them a chance. They are helpful and I plan to continue

> taking them but I dont think that the herbs and supplements are

> going to do it for me without adding something stronger to the mix.

> Maybe the fact that I have been taking the Buhner herbs for a year

> before starting abx will improve my outcome. I will test that

> theory and report back lol.

>

> I lied like the ground to a Medi-Centre Dr and finally got some

> mino for my non-existent pimples lol. I added mino to the mix in

> late November, a month before I got the Igenex western blot done. I

> think that the addition of the mino may have turned the negative

> into a positive and am hoping this happens again with the ELISA.

> Last time I quit the mino for 2 and a half weeks prior but this

> time I am just not strong enough to stop for that long and deal

> with the return of the vertigo, dizziness and all the other

> symptoms that have finally left me again.

>

> With the mino I have seen major improvements... dizziness, vertigo,

> memory etc. My vision seems to be improving and the brain fog seems

> to be somewhat better. (I am also taking grapefruit seed extract

> for the biofilm). I don't like taking the mino without a Dr's

> guidance due to the heart palputations and other side effects that

> I am having. And I would like to add a few more meds in there to

> try and kill any possible coinfections but if the Drs wont even see

> me for Lyme disease I certainly wont get a chance to try anything

> else.

>

> Take Care,

> Chris

>

>

>

[Guest guest]

>

> I agree with Knotweed that lots of people are not getting much better using

abx. From looking thru the research I have noticed many things about abx

failure... in the studies anyway. I noticed that their choice of abx may not

have been the best. Most studies use one type of abx only and often treatment

times are short. In the case of MS (which I consider to be lyme with

neurological involvement, in my case anyway)studies have shown that 2 years of

mino reduced brain lesions by 85% and almost completely resolved the symptoms as

well. However relapses always occured upon discontinuation of abx.

yes, it is possible that an optimal ABX treatment regime can be discovered.

However, I'm sceptical regarding a 'general' treatment that would work for

everyone, and I don't think the medical community is interested in tailoring

treatments for every patient, takes too much time. A few ILADS docs try this,

for those who can pay and probably with a bit better outcomes.

everything we know shows that Bb is extremely resilient once is has established

itself in the body. Stop the ABX and it comes back.

> Many people with chronic lyme have negative blood test results. Since those

tests are looking for antibodies made by our immune system wouldn't it make

sense that the reason we are getting negative results is because our immune

systems are in such bad shape?

I think this is mostly a limitation of the tests. A common factor for negative

is immune complexes: there are loads of antibodies but they are not

detected by the test because they are all bound to antigens (Bb's). There are

basic procedures for including these complexes in the test, but they are

not used (that would sure increase number of positives, so it is not an

acceptable option ...).

Another factor is that most of the spiro's are no longer in the blood but in the

tissue, where the tests will not detect them (unless something washed out after

ABX treatment etc.)

I agree that weak immune systems are probably part of the problem, maybe a

pre-existing problem that made it easier for Bb to establish itself. We have

powerful cellular immune reactions (cytokines etc.) against spirochetes, but

apparently they don't work well enough in some people, or with certain strains

of Bb.

> Maybe the fact that I have been taking the Buhner herbs for a year before

starting abx will improve my outcome.

yes, I think it should help because they work differently, it is kind of a two

punch approach. The Buhner herbs help your body to heal some of the damage while

the abx kills the bugs (or at least keeps them under control a bit). As long as

the ABX are not causing real damage I think it is a good approach.

> With the mino I have seen major improvements... dizziness, vertigo, memory

etc. My vision seems to be improving and the brain fog seems to be somewhat

better. (I am also taking grapefruit seed extract for the biofilm). I don't like

taking the mino without a Dr's guidance due to the heart palputations and other

side effects that I am having. And I would like to add a few more meds in there

to try and kill any possible coinfections but if the Drs wont even see me for

Lyme disease I certainly wont get a chance to try anything else.

good to see some improvement, that should help to lift your spirits

I don't care much for the 'guidance' beause my experience is that most docs know

nothing about abx side effects when treating lyme (high dose, longterm etc.).

[Guest guest]

" Are you referring to IV antibiotics or oral when you say they don't work? "

I have never been on IV abx and have just recently began taking minocyline

orally so I don't know first hand if they work or not... but I am hopeful..

because I need to have hope.

I was actually referring to the published research and what I have heard from

others. In most of the published research they say that abx, whether IV or oral,

doesn't seem to cure the patients however lots of these studies are tainted

because they have been done by members of the IDSA. I will not believe anything

from that bunch because their behavior has been so questionable. If their

research and ideas were legitimate they would have no reason to behave in such

an unprofessional and deceptive manner. Most if not all of the other research

studies I have read say that they use one abx at a time... usually something

like doxycyline for 6 weeks to 3 months and they conclude that this abx is not

effective. That means that these scientists and Drs are not considering

biofilms. Does that mean these Drs are not up to date with Lyme disease

research?? Kinda looks like it to me.

When I read the publications I don't just look at the results because the whole

design of the study will change the outcome. It is easy to get the results you

want by manipulating the variables within the study. Other important variables

iinclude how they are testing the blood and how long their subjects have had

Lyme disease.

Hope that helps.

Take Care,

Chris

[Guest guest]

>

> I stopped taking the abx but am unsure of whether a person really needs to

stop taking the herbs. I am taking knotweed, andro, siberian ginseng, cats claw

and a bit of red root. It seems to me that these herbs are immune stimulating

and that should be a good thing when checking for the production of antibodies

shouldn't it?

AFAIK only catsclaw is a real immune stimulant/modifier. I don't think there is

a good reason to stop the herbs, they don't inhibit antibody formation.

> And I am also wondering how long I need to be off of abx (and herbs if

necessary) before I get tested?

I'm not aware of any solid data on that. IgM antibody production takes 3-4

weeks, and IgG takes about 6 weeks after first contact with the antigen. Most

antibiotics can prevent antibody production because they have anti-inflammatory

properties, but IMHO this is mostly a risk if you take them for a prolonged time

directly after infection. In your case there has been plenty of antigen exposure

prior to starting ABX, so maybe antibody production will resume soon after you

drop the ABX.

Some of our local labs give recommendations for ABX use before doing a PCR test,

but that is different from serological tests.

Sad story, your IgeneX test is perfectly clear. We have these 'too many false

positives' stories in Netherlands as well, about the few really good foreign

labs. Most docs here use only which of course is double-checked with a

lousy WBlot if the unexpectedly comes back positive. And if the +

WBlot is positive, they will usually say it is a 'serological scar', proof of an

old infection that is no longer active so no need for treatment.

And most of these opinions come from academic hospitals that really should know

better; apparently they take all their info directly from the IDSA gang and

disregard other evidence.

[Guest guest]

>

> In most of the published research they say that abx, whether IV or oral,

doesn't seem to cure the patients however lots of these studies are tainted

because they have been done by members of the IDSA. I will not believe anything

from that bunch because their behavior has been so questionable.

agree that most IDSA research is garbage but even then, I don't see any

convincing studies regarding ABX use for chronic lyme (those ill for more than

1/2-2 years). Many studies report treatment failures, also with higher dosage

than recommended by IDSA. On the other side, many studies (including those from

some IDSA ducks) report significant improvement, so there is always hope - just

don't be disappointed if many symptoms remain, because most of the success

applies to early lyme.

There has been no convincing publication regarding ABX treatment success from

ILADS or other researchers outside IDSA. This is partly because the IDSA censors

scientific magazines (e.g. Klempner is editor of the prestigious NEJM journal)

but having no publications at all clearly shows that it is VERY hard to prove

that ABX are effective in chronic Lyme (effective = 100% cure for most

patients).

The only thing we can conclude now is that the present treatment regimens are

not effective for many lyme patients. That means we need new ABX treatment

regimens (higher dose, pulsing, rotating, combining several types of ABX,

combining with herbs maybe) or complete different treatments (e.g. based on

quorum sensing or phage therapy).

Biofilm is part of the problem; but this is not specific for BB, it applies to

almost every bacterial infection. Fortunately this problem is now widely

discussed in medical papers, so one can hope that the ducks get aware of it

sooner or later.