I am frustrated and want concrete proof this is what is going on with me.
I am seeing a LLMD.
Posted by laura j (Member # 14257) on :
Yes, and I feel like you do. I want to be 100% sure. I came back only 1 band positive on my Western Blot (41) and doc said CDC required 3-5 bands. She said it's Lyme anyway.
Did you have any testing at all?
I did have mycoplasma though, maybe still do, which is common with Lyme.
Posted by disturbedme (Member # 12346) on :
Yes, I was only clinically diagnosed as well. My WB only had one band from IgG positive: 41++
For a long time, I didn't know if I should trust it or not. What I mean is, I didn't know if what I had was really lyme or not and I was scared!!!
Then I had Fry lab done and got back positive Bart. Since then, we've been pretty positive I do have Lyme and Bart. I think I have Babesia too, but not sure since haven't gotten a positive on that.
Posted by Tracy9 (Member # 7521) on :
Yes, Have 1 band 23. Been sick for 3 years and getting worse. Finally got to LLMD a few months ago to get Dx and treatment.
One thing about Lyme is that may never know 100% if you have an active infection. There is no definitive or accurate test for lime period. Even those with positive western blots could have been infected, treated and or in remission.
This is why Lyme and many other diseases are clinically diagnoised. It is also why you should go to a highly qualified LLMD and work with them through Dx and treatment.
I have also been told by another long time well respected LLMD if you start abx treatment and herx within 3-4 weeks- you either have Lyme of somthing genitically similar that we dont know about.
This in the end may be one of the best tests.
Posted by Geneal (Member # 10375) on :
Yes. However, it was a duck that diagnosed me off of Quest IgM band 23.
Of course that is the only positive test I had out of about 150!
No doubt about it. I herxed like crazy on doxy.
My LLMD didn't even need to get me tested via Igenex.
He said with my symptoms and herx reactions there was no doubt
I have Lyme and co-infections.
Remember, the Western Blot is your body producing antibodies.
My LLMD said the sickest patients he has had were the ones with
The fewest bands.
Hugs,
Geneal
Posted by adamm (Member # 11910) on :
plenty--perhaps even the majority--are.
As for the sickest patients having the fewest bands--
aren't a lot of symptoms secondary to the body's immune
response? If that were the case, one wouldn't expect the sickest
patients to present with the fewest bands.
But I'm no one to tell your doc he hasn't observed what he has...
Posted by hurtingramma (Member # 7770) on :
Yes. My Western Blot was done at Stonybrook and I had +41 and a few others, but not enough. When I asked my LLMD to send another to Igenex, he pointed out that the diagnosis was clinical and asked if I trusted his judgement. I did.
He also pointed out that the expense was unnessary as he truly believed I have Lyme.
Posted by TerryK (Member # 8552) on :
Geneal wrote:
quote: As for the sickest patients having the fewest bands--
aren't a lot of symptoms secondary to the body's immune
response? If that were the case, one wouldn't expect the sickest
patients to present with the fewest bands.
This is my understanding (I'm not a doctor): Many of the symptoms are caused by the toxins that are created by the bugs, including die off.
One of the reasons that bands don't show up is complexed antibodies - the antibodies are all bound up in immune complexes. One of my test results showed that this was part of my problem.
Even with 4 of the 5 needed bands for CDC positive IgG and both IgM and IgG IgeneX positive WB's I still have trouble believing it. I know based on my tests and my response to abx that I have it but the fact that most of the medical community does not believe it makes it seem like it's not legit.
There are autospy reports that prove that one can be seronegative and still have lyme.
AND for those who haven't seen it:
http://www.anapsid.org/lyme/lymeseroneg.html Reasons Why A Seronegative Test Result Might Occur Tom Grier, Lyme Alliance 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
Terry
Posted by Lymetoo (Member # 743) on :
ME Doesn't make much difference to me. I've had hundreds of tick bites....so my diagnosis was pretty simple!
My second WB brought up about 5 bands more than the first one. [after abx therapy]
If you've had Lyme for a long enough time for it to destroy your immune system, then the likelihood of your test showing tons of bands is reduced.
Why? Because your immune system can't respond to the antibody test!
Posted by cheezhead (Member # 12038) on :
I also have always tested seronegative on numerous blood tests(quest).
I never had a IngenX test, he convinced me not to spend any more time and money on blood tests, that he was convinced I had lyme.
My llmd looked at my tick exposure, history, symptoms, and blood work, to clinically dx me.
Even though he was sure I had lyme, I was not convinced, untill about an hour afrer I started my abx treatment; and herxed like CRAZY.
What truly scares me, is the fact that many people who are infected with lyme, but never show positive on blood work, and may go untreated for years. especially children.
Posted by lymie_in_md (Member # 14197) on :
If the LDA researchers at Columbia University could do just one thing with their research dollars. Come up with a test for lyme that is infallible. It is nice to be able to show those significant in your life, yes I do have this. But more importantly for those who don't even know they have it.
Posted by TheCrimeOfLyme (Member # 4019) on :
I think most of us have been. I didn't test positive ( I was only equivocal) until clear after in treatment.
Lyme is a clinical diagnosis. NO Blood test is good for it. NONE. If you wait for a red flag to be 100 percent sure, and it IS lyme, you could end up sicker.
Its your body. Either treat it, or dont. But LLMDs treat clinically, the way it SHOULD be done, the way even the CDC says Lyme SHOULD be diagnosed- clinically.
I took the antibiotics and went into a full remission.
Posted by Andie333 (Member # 7370) on :
I was initially diagnosed clinically, and I was tested at the same appointment.
The test results came back CDC positive. It was a relief for me to have the dx; I'd felt a little crazy for awhile, and this helped explain what was happening.
However, I have never tested positive for the co-infections and am being clinically treated for two.
Posted by lucy96734 (Member # 8372) on :
My WB through Igenex was IND. I had 4 + and 5 IND out of the section where you need 5 out of 10 and I had 1 + and 2 IND where you need 2 out of 3.
If IND meant + then I had more than enough but unfortunately 2 IDs still told me I didn't have Lyme despite this test and every other test in the past 5 years ruling out everything else. Thankfully my neurologist believed in the CDC policy of a clinical DX and said I had Lyme.
She saved me a ton of money because her say so got my insurance to pay for medications.
I knew I had it based on the IND WB but convincing the insurance company was another matter.
Posted by sparkle7 (Member # 10397) on :
My WB was negative as far as NY State was concerned. I trust my doctor & he feels that I have Lyme.
It may actually be to your advantage to have a negative test - You can say you have no pre-existing conditions if you get health insurance... unless you already have it.
As far as I know - the tests are inaccurate. If you have a knowledgeable doctor, he may be able to read other blood work & put the puzzle pieces together.
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Doesn't make much difference to me. I've had hundreds of tick bites....so my diagnosis was pretty simple! ![[Wink]](wink.gif)