tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
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.
Posts: 2541 | From Northeast | Registered: Jan 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
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.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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adamm
Unregistered
posted
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...
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posted
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.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
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.
Posts: 55 | From S.E. Wisconsin | Registered: May 2007
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
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.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
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.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
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.
Posts: 2549 | From never never land | Registered: May 2005
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posted
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.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
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.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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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)
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