Recently I suspected that I have Lyme disease, and went to see an LLMD. I've been having a lot of symptoms that usually go with Lyme for last 3 years (fatigue, facial tingling/numbness, headache, neck tension/pain, light sensitivity, etc), but they are not as severe as what I read from others on this board. I don't remember having a tick bite ever, and I do not remember any skin rash.

LLMD said that I do fit clinical picture of Lyme, and ordered Lyme western blot through Igenex. Test results came back, and I was positive on IgM and negative on IgG. I understand that general opinion on this board is that I do have Lyme. My LLMD agreees, so I started treatment and am currently on antibiotics. I do not however experience any classical Herxing pattern (my good and bad days are pretty random), and I do not have any improvements after 2 month (although, I understand 2 month is not enough), and if anything I am feeling worse (but that can be drug side effects).

Now, LLMD also ordered WB for my girlfriend, to rule out possibility of infecting me back through sexual transmission. She does not have any of Lyme symptom whatsoever, and also never remembers tick bite or rash. Her WB came back exactly as mine -- IgM positive and IgG negative.

Now, it makes me wonder -- could it be that both her and me have false positives? Did anyone hear about false positives coming from Igenex? What is the false positive rate of Lyme WB?

You see, I am not convienced that I do have Lyme - as I said my symptoms are pretty mild compared to other people Lyme symptoms. It is kind of hard to justify intake of huge antibiotics doses for myself, and more so for my fiancee who is feeling just fine ...

I have never heard of false positives coming through IgeneX. All the WB shows is that your body has produce anitbodies to the bacteria, that you have been exposed at some point. If your girlfriend is not having symptoms she may not have an active infection.

I do understand how you feel though....the doubts about being sick. (I did this myself..alot.) As far as herxing..it's different for everyone and some people don't herx at all.

Even if your symptoms are not severe, by getting treatment now...you won't get to the point of severe.

You said,
"I am feeling worse (but that can be drug side effects)."

The feeling worse may not be drug side effect, but may indeed be herxing.

Hang in there, your not alone.

If interested go to:
www.calchannel.com

1. Click on webcast

2. Type in February in the archives

3. Scroll down to Feb 25th, Health and Safety

4. Click on watch

There are some great presenters there and a lot of information to help you understand not only the testing but other things that have to do with lyme disease.

Went through numerous tests with a neurologist and she said I was fine (real normal to having numbing over your entire body).

As time progressed, I became worse and the final straw was after I had steroid injections in June and had no idea I was carrying around this awful stuff, joint pain came with a vengenance and has not left.

I don't like the fact that I've been on abx for 4 months but I don't want to get to the point I'm totally incapacicated either.

My test was positive through Igenex and so was my husbands and I believe my 8 year old daughter got it inutero.

Husband was bitten by many ticks years ago and I honestly think it could've been transfered sexually but wouldn't swear to it.

I've lived all over the us and used to take week long camping trips with lyme never entering my mind.

Igenex tests are the most accurate (I think at least 50%) so I have no reason to doubt the results. Remember, lyme can be a clinical dx and some people who are worse off then me never test positive.

I have researched this issue my self for another case. From what I can see, there are no publications that indicate false positives for western blots using Lyme antigen probes. This is confussing as the standard line form many Dr's is that "it is a false positive". Still there are no publications to support such a statement. In the classical physical models, IgM is a short lived anitbody that fairly quickly gets replaced by IgG, with a cross over period where IgM and IgG are both positive. Lyme is highly unusual compared to most other disease agents so this classicial model may not be valid. From what I can see, there is no clear consensus on this at all.

That being said... Igenex its self have a criteria where they say (you shoul check this yourself on te ILADS website... N.Harris did the presentation) in which a confirmed case consists of IgM + IgG or either of these + PCR. Further to this the guidelines that Dr. Burrascano has written has a scoring criteria to determine probability of having Lyme disease. (not to be confused with the list of possible symptoms). In this the western blots have a certain score + different types of sypmtoms have additional scores. You add them up and depedning on the number that you get you are unlikley, possibile, probable or confirmed. This is a good method so you might want to look at it, again on the Ilads website.

Another question that affects the western blot interpretation is which bands appeared on the IgM as well as which if any the IgG bands where present. Each band means something and some cross react with other diseases.

Finally, there are a lot of other things that can mimic Lyme. Many of these other things also respond to antibiotice treatment but do not exhibit the jarisch herxheimer reaction. Many are also carried by ticks. The net result is that I suspect that some people may not have Lyme per-see but may have an associated disease (thus the the "and assocoated diseases" in the ILADS name ???). Unfortunatly once some of these other diseases become entrenched that are as hard a Lyme to get rid of and some you can never get rid of (again like lyme).

I would just go with what the Dr says as I am sure he has seen many many different case presentations and therefore has the required experience.

Ask about changing your abx? If it's not working, then it's not working right? I would think you'd be able to tell.

what cross reacts more than anything else on the lyme tests are other spirochetes. Particularly the 41 band. Those would be syphilis, leptospirosis, other borrelia. Other things rarely cross react from what I've read.

The State of NY has named LD a sexually transmitted disease and LD is a cousin to syphyllis, it would be very difficult to have this bacteria contained when accurate testing is supressed. Our blood banks don't test for this, people travel and move carrying the disease with them and spreading it unknowingly. Birds carry an average of 2-4 ticks from the N down the entire Eastern Seaboard to FL. Birds from the N are big carriers of LD because of the US Goverment Lab on Plum Island just N of the Hamptons that has worked specifcally w/this bacteria since 1952 or so. There have been so many breaches of safety from this lab which led to these birds carrying infected ticks S, to belive that this disease is contained is impossible. For a disease that is as transmittable as HIV, it seems it would be quite rampant by now.

For my $$, I suggest the Bowen Test. It is very, very accurate and because you have questions I think you'd do better w/a test that is definite. The Bowen looks straight at the bacteria, either it's there or not. It has an unusual staining process that makes the bacteria glow under a darkfield microscope and you can see the spirochetes right before your eyes. Igenex can miss the L-cyst form of Lyme Disease and The Bowen has a higher accuracy rate in catching the two co-infections they test for, Babesia and Eherlichia. Here are the links for the articles I mentioned. WELL WORTH THE READ!!!

Both my husband and I are positive for lyme. I've had symptoms for YEARS, he seemed fine but admits the treatment has helped him, so yes, we've had an experience similar to yours. The antibiotics SAVED my life and improved his quality of life.
http://www.mercola.com/2001/jul/25/lyme_disease.htm

quote:

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Originally posted by Beverly:

The feeling worse may not be drug side effect, but may indeed be herxing.

Hang in there, your not alone.

---

Would you mind posting your positive [&equivocal] bands? Those are very important.

Also, read this WB explanation. It may answer a few things for you!

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

------------------
oops!
Lymetutu

REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

1. Recent infection before immune response
2. Antibodies are in immune complexes
3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)
4. Spirochetes are deep in host tissue
5. Only blebs in body fluid; no whole organisms needed for PCR
6. No spirochetes in body fluid on day of test
7. Genetic heterogeneity (300 strains in U.S.)
8. Antigenic variability
9. Surface antigens change with temperature
10.Utilization of host protease instead of microbial protease
11.Spirochete in dormancy phase
12.Recent antibiotic treatment
13.Recent anti-inflammatory treatment
14.Concomitant infection with babesia may cause immunosuppression
15.Other causes of immunosuppression
16.Lab with poor technical capability for Lyme disease
17.Lab tests not standardized for late stage disease
18.Lab tests labeled "for investigational use only"
19.CDC criteria is epidemiological, not a diagnostic criteria
http://www.drcharlescrist.com/testing.htm

quote:

---

Originally posted by david1097:
Hi

... Igenex its self have a criteria where they say (you shoul check this yourself on te ILADS website... N.Harris did the presentation) in which a confirmed case consists of IgM + IgG or either of these + PCR. Further to this the guidelines that Dr. Burrascano has written has a scoring criteria to determine probability of having Lyme disease. (not to be confused with the list of possible symptoms). In this the western blots have a certain score + different types of sypmtoms have additional scores. You add them up and depedning on the number that you get you are unlikley, possibile, probable or confirmed. This is a good method so you might want to look at it, again on the Ilads website.

---

David1097 - I am having difficulty in finding the scoring info that you mentioned. Would it be possible for you to post a link for exactly what you are referring to?

Thanks.

DOH!!! Forget it, I found what you were talking about. Thanks for the original info!

The risk of a few months of antibiotics is NOTHING compared to having chronic Lyme.

I just came back from the ILADS Lyme Conference back East, where the owner of IGenex spoke. Here are the notes I took during his talk:

Nick Harris, PhD, IGeneX CEO: Lyme Testing http://www.igenex.com/about.htm

In his talk, Harris discussed his lab's credentials, and how hard it is to get certified as a commercial lab serving New York state and California. Unlike many labs, IGeneX uses two strains of the Lyme bacteria (B31 and 297), so it's more likely to detect strains from the Midwestern US and Europe. It also tests for the late Lyme markers of 31kDa and 34kDa, which take 6 months to develop, and aren't always included in other labs's Western Blot tests.

He presented a physician's testing strategy for patients who are suspected of having chronic Lyme disease.

His definition of a positive Lyme diagnosis:

A positive whole blood PCR test (detects Bb DNA)
or
A positive IgG and IgM Western Blot (especially if the 31 or 34 kDA bands are positive.)

If these criteria aren't met, and the physician still wants to confirm a clinical diagnosis with a positive test, he suggests an antibiotic challenge to increase the amount of free-floating Bb in the system, then running a Lyme Dot Blot test and a 3-sample pooled urine PCR test.

Important note: IGeneX has found that blood samples yield more positives when taken in the late afternoon, the time when most Lyme patients experience their intense bouts of fatigue.

******
If you'd like a copy of the complete conference report, email me, and I'd be happy to send it.

IgM:
18 +
22 -
**23-25 +/-
28 +/-
30 +
**31 +
**34 -
37 -
**39 ++
**41 +
45 +/-
58 +/-
66 +
73 -
83 -
93 +

IgG:
18 +/-
22 -
**23-25 -
38 -
30 +
**31 +/-
**34 -
37 -
**39 +/-
**41 ++
45 +/-
58 +
66 +
73 -
83 -
**93 -

As for my girlfriend, she has an even "more positive" IgM then I do, but her IgG has only the 41 band, and nothing else.

18 +++
22 -
**23-25 +
28 -
30 +
**31 ++
**34 +
37 -
**39 +
**41 +/-
45 +/-
58 +
66 +
73 -
83 -
93 -

It does not look like it is a false positive but what exactly it means I am not sure. With the symtoms and your WB my guess is that you have it but have not had it long enough to get really screwed up. I went for 6 years before I started to get really sick.

The +++ at 18Kda for your girlfriend is interesting. I have seen it before with possible person to person infection. This persons WB was exactly the same as the one you listed, complete with 41 Kda on the IgG. This is not surprising as 41 is the first to light up according to a numbe of publications. Problem is that the 41 Kda flagelin band alone can present as a false positive since there are other organisms that cause the same anitbody to be produced (lots of bacteris have flagella .

I have often wondered if the positive IgM and negative IgG is the result of exposure to the antigens from the lysing of the bacteria. It is know that the blebs that cme off of the bacteris as it dies are released in ery very very large numbers. These in theory should contain some the antigens that are tested for in the WB. If the exposure is intermittent and not a true self sustaining infection, would IgM go up and down with no IgG response? Anybody have any odeas on this?

QUESTION TO EVERYONE HERE7
Has anybody seen a strong 18 Kda in similar possible human vetor cases??

Yes, you meet the criteria for LD in one & -1 more positive for CDC;'s criteria.

Your girlfriend had 7 posiitves. MMLD sa
id 2 positives count as ONE; 3 positives count as 2, and I've only seen one ++++...counts as 3.

Do a search for TINCUP's links for new members; I know she has posted number results there; check them against yours.

As you've probably gathered at this point, Igenex is reliable in the sense that there are no documented cases of false positives. When you come back with strong IGM antibody measures, there's a good chance you're in the early stages of infection, when treatment is most effective. So if you're asking about Igenex mostly to ask 'is this a good reason to pursue treatment' I think the only informed answer would be YES.

If you don't treat now, you're more or less condemned to live like a hypochondriac, in a state of hyper-vigilance toward any symptoms that may be manifesting and pointing to active Lyme disease. I think getting treated will actually be much easier on you than spending the next years of your life wondering every time you're ill: 'is this it? is this that damn Lyme disease?'

I had a persistent unexplained rash and flu-like symptoms in the mid-90s - went to a doctor who had no clue, celebrated when it went away. That's missed opportunity #1. Then in 1999 I found that I was forgetting and misplacing things constantly, to the point that it was really interfering with my life. I could function at work, but was coming home totally exhausted and mentally adrift. At that time, my older brother was freshly diagnosed with adult ADD, so instead of going to a regular doctor I went off to his same shrink, who quickly declared my symptoms ADD and started me on stimulants. Missed opportunity #2.

In the fall of 2002, I was hit with crushing fatigue. The stimulant I was taking for ADD no longer worked. I could take 30mg of Adderall (which is basically speed) and drink a large cup of coffee and be passed out in my chair an hour later. A few months later, I could no longer work at all. By June of 2003, I had to stop driving, because I was having seizures behind the wheel, losing time, and finding myself in the middle of intersections with no idea how I'd gotten there.

Over the next two years, seizures, intolerance to sun, heat, and exercise, edema and rash in my legs, ankles and feet, and unbelievable pain in my knees, lower back and neck were added to the mix. I saw more than 15 doctors, including neurologists, orthopedists, and a long series of Internal Medicine and Infectious disease doctors.

By the time I finally got tested through Igenex and came back positive for Lyme, my symptoms were so severe that my LLMD was torn between needing to get me on IV antibiotics immediately to forestall permanent damage and fearing that the die-off of the bugs, in my current state, could be even worse.

So we're taking a middle course, trying to get me stable on oral antibiotics and anti-seizure meds while treating me for Babesia, a co-infection.

During our most recent office visit, my LLMD told me: 'This late in the game, after being heavily symptomatic and untreated all these years, it's impossible to say how much of your decline we'll be able to reverse."

You don't want to end up like this. I can't say for a certainty that you will, if you don't get treated now. No one can.

But I CAN tell you that I would give just about anything to go back in time and get treatment BEFORE my health, my livelihood, and my ability to leave the house unescorted had been stripped away from me.

I hope you choose to avoid that risk and get treated now.

As I am scanning your post, I too flash back to times when I had missed opportunities starting with the strange cold/flu like symptoms but knowing it wasn't the cold/flu.

Also thinking perhaps ADD was a piece of the puzzle but being told it was not.

ETC. ETC. ETC.