Lyme - Negative

[Guest guest]

Got results back from Igenex. According to them I do not have Lyme,

confirming Quest's result. For a while I wasn't sure Igenex ever gave negative

results.

Anyway, I did have a few positive bands:

IgG: 30 and 41

IgM: 30 and 34 (39 and 41 were Indeterminant - does anyone know what that

means?)

I vaguely recall someone may have claimed just 1 band is enough for a

positive dx, but I'm not sure. If anyone believes it's still possible I have

Lyme,

let me know. No plans to get tested again, as I was pretty sure already I

don't have it (based on symptoms).

Thanks,

Jim

[Guest guest]

Jill, hi I tested negative for 15 years, then tested IND which was

interpreted as positive. What IND means is there was some response to

those bands, but too indeterminate to read as a positive. Specifically,

my results were IND Western Blot IgM, bands 30, 39, 41 and IND Western

Blot IgG pos. 28, 41 and 58, and IND on bands 18 30,31,39, 35 and 66.

Dr. Stricker, MD president of the international assoc. of lyme

literate docs thinks I'm positive based on those results on a history of

CFS. Synthoms are the often the same for Lyme and CFS. I was amazed that

I could tolerate any antibiotics, but had good results, starting with

Zithromax. Instead of waking up at 10:30 in the AM I woke up at 7:30 am

and stayed functional until 10:30pm or so. Unfortunately, a resent

chemical exposure has put me back in bed again. Another way to see if

you may have Lyme is to have your NK killer cells, CD57, I think tested.

These are specific to Lyme. I would say that if I had the results you

had I would consider it more seriously. Bottom line, though, is that

until we understand why we stay ill, which is essentially tied to

genetics, we just don't have a diffinitive answer. It's not, whether you

have CFS or Lyme, it's really a question of why you are ill. I've been

watching Dr. Amy Yasko's tapes (test4health.com) all weekend. She is

working with the genetics. Under her program, she stablizes patients,

lowers excitotoxins, then clears bacterial, viruses and metals that

block the body from healing by putting in elements missing in our

bio-chemical pathways. Amazing work! Joanee

jschm111@... wrote:

>Got results back from Igenex. According to them I do not have Lyme,

>confirming Quest's result. For a while I wasn't sure Igenex ever gave negative

>results.

>

>Anyway, I did have a few positive bands:

>

>IgG: 30 and 41

>IgM: 30 and 34 (39 and 41 were Indeterminant - does anyone know what that

>means?)

>

>I vaguely recall someone may have claimed just 1 band is enough for a

>positive dx, but I'm not sure. If anyone believes it's still possible I have

Lyme,

>let me know. No plans to get tested again, as I was pretty sure already I

>don't have it (based on symptoms).

>

>Thanks,

>

>Jim

>

>

>

[Guest guest]

Hi Joanne, Rich, and All,

I have had postive Igenex Lyme, Babesia, and Erhlichia tests a

couple of years ago.

My CD 57 one year ago was 18% range is 4-38%.

What is your opinion on this . . I thought it was pretty good?

Unfortunately I just received my Natural Killer Activity test

results back and they are 6 range >19. Not too happy about that, but

my guess looks like I many be doing OK with the Lyme according to

Stricker(correct)?

Best wishes, Sue T

Joanne wrote:

Another way to see if

> you may have Lyme is to have your NK killer cells, CD57, I think

tested.

> These are specific to Lyme.

[Guest guest]

>

>

> Anyway, I did have a few positive bands:

>

> IgG: 30 and 41

Neither band 30 or 41 is specific for Lyme disease, so these will not

show any response to Lyme bacteria. They can also show up in response

to other bacteria.

> IgM: 30 and 34 (39 and 41 were Indeterminant - does anyone know what

that

> means?)

Band 34 IS very specific to Borrelia burgdorferi (Lyme disease).

According to this band showing up, you have had expsoure to Lyme. Band

39 also is very specific. The IND marker means that the color change

was not strong enough to mark as positive, but it was stronger than a

negative.

With these two bands, it looks like a strong indication that your

immune system has reacted to Lyme. Because it is in the IgM response,

it probably was recently, as IgM antibodies are only active for a few

months. With Lyme, doctors are finding that there can be repeating

cycles of IgM response, as the bacteria changes outer surface

proteins. A diagnosis is supposed to be made based on your clinical

history and your symptoms, along with the testing as support. A test,

by itself, does not prove whether or not you have Lyme.

>

> I vaguely recall someone may have claimed just 1 band is enough for a

> positive dx, but I'm not sure. If anyone believes it's still

possible I have Lyme,

> let me know.

Yes, according to these results, it is possible you have Lyme disease.

As I said above, a diagnosis is made based on the possibility of

exposure, your clinical history, and your symptoms. I don't know any

of this for you, so can't say whether these are likely to support a

diagnosis.

BTW, Igenex has a clinical record of finding approx 64% of the tests

sent to the positive for Lyme. That isn't too high. The advantage of

sending a test to them is the fact that they report all the bands, so

that it can be more fully evaluated. It isn't a matter of just one

band being enough, it is whether you have Lyme specific bands, or not.

I hope this helps. I don't read this list all the time, so if you have

more questions, you can email me.

Sonoma County Lyme Support

http://tinyurl.com/5xjxb

LymeLinks@...

[Guest guest]

, thanks for your insights into Jim's lab results. The only things I

might add are that IgeneX feels that IgG 41 is borrelia, not IgM though.

Also, I was just reading, and can't remember who I was reading, that IgMs

often will stay positive for years even when the infection has been in the

body for years when the immune system cannot kill the infection. If the

immune system can't make the antibodies which would be found in an IgG it

will look like a new infection. I will try to track down where I read that.

It may be at the IgeneX website.

a

[Guest guest]

In Buhner's book - Healing Lyme - he says " For a positive Lyme

test, the 41kd band and at least one of the others have to appear at

testing. "

Ballady

>

> Neither band 30 or 41 is specific for Lyme disease, so these will not

> show any response to Lyme bacteria. They can also show up in response

> to other bacteria.

[Guest guest]

paula, susan & all,

igenex says i am negative for lyme, tho since i have 1 positive band they say

test again in the future.

it also says my IgM 34 band could be a false tell, that a vaccine can cause

someone who does not have lyme show this positive band.

i don't know if it has to be a recent vaccination or not. i do know i have

not been out more than a few times in the past year, and in the city, so i have

not been exposed to ticks in that time.

as for my doc, he's not a lyme specialist, and between the quest and igenex

tests, he is convinced i do not have lyme.

jim

sfriedl@... writes:

> Band 34 IS very specific to Borrelia burgdorferi (Lyme disease).

> According to this band showing up, you have had expsoure to Lyme. Band

> 39 also is very specific. The IND marker means that the color change

> was not strong enough to mark as positive, but it was stronger than a

> negative.

>

> With these two bands, it looks like a strong indication that your

> immune system has reacted to Lyme. Because it is in the IgM response,

> it probably was recently, as IgM antibodies are only active for a few

> months.

[Guest guest]

jschm111@... wrote:

> paula, susan & all,

> igenex says i am negative for lyme, tho since i have 1 positive band

they say test again in the future.

>

I know a patient who has NOT been diagnosed with CFS, but is

awful darn close to qualifying, - all negative.

Not even equivocal.

Myco panel neg. as well.

High CMV titers.

But she's a moldie, for sure.

-

[Guest guest]

OK, a...how can I find one of those LLMDs or anyone who will treat

Mycoplasma, too, in

Colorado Springs, CO??

If one's cat has scratched one, does that mean, ya got LYME? NOW, I have

presently, given up on having any other pet animals..my dog died AFTER drinking

my MOM's pee from her colostomy bad, but we still got those deer, outside

our house...one is crippled..but she defies nature, and continues to live

on...YA HOO!!!

AMELIA

[Guest guest]

Jim, if nothing else, you are a classic example of the problem we have with

diagnosis. This patient describes is the same. PCRs for anything are

often false negatives. And then there are the infections with no test such

as all the babesias. How about bartonella? Did you have a cat? Who knows.

One approach is that of the Road Back folks and Dr. Marshall - just assume

it is some sort of cell-wall deficient infection such as mycoplasma or

Chlamydia or borrelia or rickettsia and start treating it with low dose

longterm antibiotics.

And avoid mold.

And take whey protein.

Etc etc etc.

How about that urine antigen test? I would still try to get that given that

you had a couple of positive bands and some equivocals.

a

jschm111@... wrote:

> paula, susan & all,

> igenex says i am negative for lyme, tho since i have 1 positive band

they say test again in the future.

>

I know a patient who has NOT been diagnosed with CFS, but is

awful darn close to qualifying, - all negative.

Not even equivocal.

Myco panel neg. as well.

High CMV titers.

But she's a moldie, for sure.

-

[Guest guest]

" igenex says i am negative for lyme, tho since i have 1 positive band

they say test again in the future. "

Jim, this is EXACTLY what happened to a woman in our support group. She was

just telling

me this last night -- she was positive on one band, so thought she was fine. A

year and a

half goes by, she goes to the FF Centers, and finds out she has it after all. I

don't know

the exact specific lyme tests they run, but you perhaps could call the nearest

center to find

out?

Dan

> > paula, susan & all,

> > igenex says i am negative for lyme, tho since i have 1 positive band

> they say test again in the future.

> >

>

> I know a patient who has NOT been diagnosed with CFS, but is

> awful darn close to qualifying, - all negative.

> Not even equivocal.

> Myco panel neg. as well.

> High CMV titers.

>

> But she's a moldie, for sure.

> -

>

>

>

>

[Guest guest]

I am a DAMN MOLDIE, ERIC,

After reading Mold Warrior, did you find anything that can be done about,

that, except, moving, as far as, one can from that mold..I have even, read,

that SNOW can have mold..but I am much better off in low-humidity areas,

definitely, much better than THE MOLDY SOUTHERN usa..

I was sent into a tailspin with Allergy shots.

Amelia

[Guest guest]

i'm afraid my doc won't go any further on the lyme, testing or treating.

i think the ffc uses quest, which i also had done and it said negative.

nope, no cat or pets.

maybe down the line i may re-test.

thanks,

jim

[Guest guest]

Amelia, I sent you some names off list. Hopefully you can find a Lyme

doctor. The bartonella usually is caught from germs picked up while cleaning

cat litter boxes etc. I don't know if some ticks carry it or not. They do

carry mycoplasma and other bacteria.

a

[Guest guest]

Yea, I wish I had been more physiologically intune, when I was younger

(now, 53)...now, I can feel, everything..like that damn nerve, today, at the

dentist.

'

But, woe is me, I went into Psychology...need a medical degree, now..or at

least a medical brain...

...when I started having the CFS/ME symptoms, I went to another therapist,

told him my problems..he told me I was not psychologically ill...so I know I

am not crazy...just damn ill, and can't do anything about it, yet.

..except stay inside with my air filters..but the Respiratory therapist

thinks I should move to a lower altitude (I am at 8900 ft, cause this appealed

to

my body, when I was younger) cause I am having hypoxia..heart-like

symptoms..orthostatic intolerance

...but since, he is not knowlegable on CFS/ME, I wonder.although, I explained

to him, the other day, about a possible compensated heart problem, and he

seemed to understand..probably thought I was crazy, though, at some level

sent my cardiologist reading material on the Cardiac issues in CFS/ME..

Where do you live, now.? still Incline...What do you think of Oregon...30

miles from Bend,

as far as, Molds...cause I know I am still Damned Allergic to those...I can

drive from Alabama to Kansas, and that is when I start feeling much

better...happier!

..you are a really good guy..I just could not understand all you have to

say, when you are so brainy!!!

Amelia

[Guest guest]

sunscaper53@... wrote:

>

> I am a DAMN MOLDIE, ERIC,

>

> After reading Mold Warrior, did you find anything that can be

done about, that, except, moving, as far as, one can from that

mold..I have even, read, that SNOW can have mold..but I am much

better off in low-humidity areas, definitely, much better than THE

MOLDY SOUTHERN usa..

> I was sent into a tailspin with Allergy shots.

>

> Amelia

Yeah, there's a lot that can be done, but first,

In response to " Mold Question " about buying that house that once had

a mold problem: Not all molds are toxic, but if the house has had

a mold problem, I wouldn't take the chance.

For someone with a compromised immune system, it's not worth the

risk.

And back to a bit about what can be done:

When I started this whole nonsense, I didn't leave Incline.

All I did was identify the spore plumes and stay out of them, and

decontaminate after passing through, EVERY TIME.

" But " , I hear you ask, " How do you know when you've been hit

by a spore plume? "

I couldn't, until I took a sample of mold out to the desert and

trained myself. But I've got a great way to give people a taste of

what it's like. Just go to Truckee High school.

Remember that teachers lounge? and the one teacher who felt

something was wrong and got out of there before going down the

slippery slope to CFS Hell? That made an impression on me.

I thought that perhaps I might learn something from this.

So, you just go to Truckee HS, and when you feel " it " , remember,

that is the feeling you must stay away from.

I know! It doesn't kill you instantly. It's a slow burn and takes

time and special circumstances, but that's the nasty stuff all right.

And it's murder to PWC's.

-

[Guest guest]

I sure felt better at a lower altitude when I visited one last fall. Can't move,

but plan on another visit as soon as I am finished paying for last one. The

effect lasted some months. (I live at nearly 6000 ft.)

Adrienne

Re: Re: Lyme - Negative

Yea, I wish I had been more physiologically intune, when I was younger

(now, 53)...now, I can feel, everything..like that damn nerve, today, at the

dentist.

'

But, woe is me, I went into Psychology...need a medical degree, now..or at

least a medical brain...

..when I started having the CFS/ME symptoms, I went to another therapist,

told him my problems..he told me I was not psychologically ill...so I know I

am not crazy...just damn ill, and can't do anything about it, yet.

.except stay inside with my air filters..but the Respiratory therapist

thinks I should move to a lower altitude (I am at 8900 ft, cause this appealed

to

my body, when I was younger) cause I am having hypoxia..heart-like

symptoms..orthostatic intolerance

..but since, he is not knowlegable on CFS/ME, I wonder.although, I explained

to him, the other day, about a possible compensated heart problem, and he

seemed to understand..probably thought I was crazy, though, at some level

sent my cardiologist reading material on the Cardiac issues in CFS/ME..

Where do you live, now.? still Incline...What do you think of Oregon...30

miles from Bend,

as far as, Molds...cause I know I am still Damned Allergic to those...I can

drive from Alabama to Kansas, and that is when I start feeling much

better...happier!

..you are a really good guy..I just could not understand all you have to

say, when you are so brainy!!!

Amelia

[Guest guest]

sunscaper53@... wrote:

> But, woe is me, I went into Psychology...need a medical degree,

now..or at least a medical brain... ..when I started having the

CFS/ME symptoms, I went to another therapist, told him my

problems..he told me I was not psychologically ill...so I know I am

not crazy...just damn ill, and can't do anything about it, yet.

> Amelia

Send me an Email.

I want to show you something.

-

[Guest guest]

Hello Adrienne,

Can you give me the general area, humidity level (at 6000 ft.) and where

you visited, that

made you feel better? Do you have mold allergies?? My brain is

fairly..mushy, today, after

traveling/dental issues, yesterday..

Amelia

[Guest guest]

Hello......

Mush brain, today...no comprehensibility, here.

Amelia

[Guest guest]

In a message dated 7/27/2006 12:18:16 P.M. Mountain Daylight Time,

bobn1955@... writes:

Ok, I thought was using a euphemism for truckstops Truckee High

School....but I knew what he mean't, as far as, mold exposure goes...THIS IS

JUST

TOO FUNNY!!! Thanks for the laugh...

Like my dentist...I chew gum, all the time, to keep the saliva flowing...He

cracked me up, yesterday, when he asked if I could part with that

gum..apparently, he has patients who can't..I have, also, told him I chew gum,

during

the night, to keep the saliva going..

One has to keep a sense of humor,

Amelia

Amelia

Amelia

[Guest guest]

Minneapolis, under 1000 ft. It was not humid at the time, but generally is.

I have never looked into me and mold. I live in very arid climate; high desert.

Adrienne

Re: Re: Lyme - Negative

Hello Adrienne,

Can you give me the general area, humidity level (at 6000 ft.) and where

you visited, that

made you feel better? Do you have mold allergies?? My brain is

fairly..mushy, today, after

traveling/dental issues, yesterday..

Amelia

[Guest guest]

,

You're saying that even after your experience with Shoemaker and all [i just

assume you've told them, since you don't seem shy about such things ;-) ]

that they've never fixed the teacher's lounge at Truckee HS? Also, is it

the whole building?

I would think that people would still be getting ill, even if some other

co-factor needed for full-bllown CFS/ME was missing......

- Bob Niederman

On 7/26/06, erikmoldwarrior <erikmoldwarrior@...> wrote:

>

>

> But I've got a great way to give people a taste of

> what it's like. Just go to Truckee High school.

> Remember that teachers lounge? and the one teacher who felt

> something was wrong and got out of there before going down the

> slippery slope to CFS Hell? That made an impression on me.

> I thought that perhaps I might learn something from this.

> So, you just go to Truckee HS, and when you feel " it " , remember,

> that is the feeling you must stay away from.

> I know! It doesn't kill you instantly. It's a slow burn and takes

> time and special circumstances, but that's the nasty stuff all right.

> And it's murder to PWC's.

> -

>

[Guest guest]

" " wrote:

> ,

> How did you decontaminate ?

Same way the military taught me using CS gas as a biowarfare simulant.

Bag clothing separately for treatment, take a shower and wash hair

thoroughly.

Avoid " Hot Zones " and control for cross contamination.

-