On 6/26/05, I found a large bullseye rash that got huge overnight. Prior to, had severe headaches, flulike and extreme fatigue. My doctor took one look at my rash and said..Yes...its lyme. Now, on 8 weeks of doxy at 300 mg per day.

However, my lyme test just came back today negative. Negative for lyme, babesiosis and ehrlichiosis. My bloodwork was done on 6/30/05. Found the huge bullseye on 6/26/05.

I think that they used Quest and did the lyme titer plus the others mentioned. From what I am reading online, seems like this was done too early and that they are not very accurate.

When should I repeat the tests? Which ones should I ask for? Lyme titer? Wester blot? co-infections?

I've been reading up on Igenex and got the kit mailed to my home. But, when do I test for it. I don't want to repeat it too early and waste money and just become frustrated. My doctor has no clue. I am looking for a LLMD but currently on a wait list.

Thanks. Stacy

[This message has been edited by stacypa (edited 13 July 2005).]
 

I think the ELISA test is supposed to work right away...but it is a lousy test and is by some estimates only 40% accurate.

QUEST is really, really lousy!

If you show positive with Quest, you REALLY have Lyme!

I would continue treatment and get the Western Blot done when you see your LLMD. Ideally, you should go off abx for 2-3 wks then do the WB....but you want to be sure to knock out this nasty disease while you still have a chance to.

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

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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 

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

FDA bulletin on testing: http://www.fda.gov/medbull/summer99/Lyme.html
http://www.drcharlescrist.com/testing.htm http://www.drcharlescrist.com/borreliosis2.htm

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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 

Do you mind if I copy and pass on?

Best,
SandiB
 

Most antibody tests will not be positive for 2-6 weeks after infection. A PCR is most likely to be positive in the first 2 weeks of infection (lyme & Babesia).

I don't think going off abx is a good idea until you talk to a LLMD about it. Testing and treating co-infections is important.

A well known LLMD doc has said that 92-93% of Lyme patients have Bartonella as a co-infection.

janet

[This message has been edited by janet thomas (edited 13 July 2005).]
 

Babesia and Ehrlichia-if antibody tests, again, the body needs 2-6 weeks to mount a measureable response.

Which lab-what tests, exactly?
 

Lyme-save your money-if insurance pays for it then the WB is best-get a copy of all your blood work

Ehrlichia should be adequately treated by the doxy.

Babesia testing-how deep is your pocket-best would be the igenex Babesia panel-when? In a month or so.

You might ask your doctor for bartonella tx.

How long do you expect to be on the wait list? Maybe you need to expand your travel radius.
 

I am actuallly on several waiting lists. But, some LLMD's are not taking new patients at all..no wait list...just not taking anyone new. They are booked solid.

The waiting lists range from one month to 8 months for the highly recommended LLMD's. I've called dr's in PA, MD, NY and NJ. One very close to OHIO too. They are just very busy. So, hopefully one will call me. If not, I am going to the PA doctor who can get me in in August.

So, I should ask for a Western Blot. I am most curious about the co-infections.

Thanks for your replies. Stacy
 

I couple of years ago, my sister found a tick on her leg and took it off. A rash developed later and she wasn't feeling well. She went to urgent care (because it was a weekend) and the doctor said it wasn't Lyme. The doctor prescribed an antibiotic (not Doxy) because she thought it was a skin infection. She was tested for Lyme and it was negative.

After she finished the med, she was feeling worse and went to her doctor. He said he had not seen a rash like hers and he was sure it wasn't Lyme. He did another Lyme test and she was CDC positive. She switched to Doxy and has not had any problems since.

I think Igenex is a good choice for a re-test.

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