posted
I have been sick, headachs, tremmers, nerve brown outs, frequent dizzyness, fatigue, and now I'm looseing cognitive function. I was clinicly diagnosed with lyme and perscribed a ten day treatment of 100mg doxicycline, sent on my way and told not to worry. That was in aug of 1984. I'm a big guy 6'0'' 260lbs strong hard worker. that was then, now I'm finding resistance to diagnosis of cronic lyme's from the local doc's. I live in LaCrosse WI. I think I can't test positive on a elesa or western blot because I've been infected to long. Is this TRUE? I've lost everything including my diginity, I don't want to mayor of toon town too. Is there anyone who knows what test to ask for when the spiroquet has been at work for so long. Also sphyliss is a STD why is lyme another spiroquette not? Thanks, Joel
Posts: 6 | From LaCrosse WI | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi Joe,
Welcome to the board.
I know many people who have been infected for longer than 8-9 years who have had positive
Western Blots. It is highly unlikely that your 10 day treatment erradicated Lyme.
You need to find a Lyme Literate Medical Doctor.
I would use Igenex lab for testing.
As for Lyme being sexually transmitted....well, the jury is still officially out on that one.
That is an argument that has been discussed here many, many times.
My LLMD doesn't believe it can be sexually transmitted, however, he also
States that there is so much they don't know about this disease.
Go to Seeking Doctors section and post there. Maybe someone can help you find a LLMD in your area.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Joe --
I have had Lyme and Babs sense 1986--
Had test done 3 yrs ago came back -- Indeterminate (IND)
Tests are worthless and this late date even worse --
Some Good news-- I was sick as almost as long as you and I feel 93% well now -- so you can do this too-
took 3 yrs of Good treatment --
Find a doctor that treats lyme-- LLMD -
Read the NewBee pages Dr. B -
Important to Look for Co Infections - Babs Bart many more -
You are Most likely that you are going to have trouble finding a doctor that Knowns how to treat or Will treat correctly-
Be prepaired to travel- its worth it --
Hope this helps --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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tailz
Unregistered
posted
I thought I'd add NOT to waste your time with Infectious Disease docs - mine told me my symptoms were not consistent with Lyme and he saw no reason to give me antibiotics - one week before I got my positive result.
He told a friend of mine she could wallpaper her walls with her positive result.
So post on this forum for a list of docs who will treat.
Also, most of us don't only have Lyme. It could take awhile before they start picking up coinfections.
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quote:Originally posted by joelolson: I think I can't test positive on a elesa or western blot because I've been infected to long. Is this TRUE?
It's true that some of us long term cases will never test truly positive on the WB.
But in your case, it may also be because you did not have a test through a RELIABLE lab for Lyme testing.
If you did not have a test through Igenex Lab in CA, then you really need to do that ASAP.
************
Dr. Bransfield's Reason's for Seronegativity the reasons why you can test negative and still have Lyme disease.
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e.: lymphocytic cell walls) 4. Spirochete is deep in host tissue (i.e.: fibroblasts, neurons, etc.) 5. 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, 100 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 (L-form) with no cell walls 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 20. Lack of standardized control 21. Most controls use only a few strains as reference point 22. Few organisms are sometimes present 23. Encapsulated by glycoprotein "S-layer" which impairs immune recognition 24. "S"- layer binds to IgM 25. Immune deficiency 26. Possible down regulation of immune system by cytokines 27. Revised W.B. criteria fails to include most significant antigens
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey Joel*)!*)!
I am an Olson too!!! Sarah Olson(*)!!!!!!
W E L C O M E !!!!!*)*!)! ************************ I just got back from Wisconsin from the Brule river- boy are there ticks there!!!!!!!!!!!!!! You can get better with tx even if you are chronic!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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