posted
Ok, so no one has probably pursued lab test comparatives, especially since many are clinical diagnosis without laboratory confirmations to start with. But I have to ask. It would be great if it existed.
Yes, I know lyme and co-infections are a clinical diagnosis and labs aren't 100% or even close.
I recall Mojoey said he planned to retest post-Germany as part of analytical comparative documenting his treatment journey. Joey, if you are out there, did you test yet?? If not, I hope you will consider it. Joey, seriously, you are such a good writer and have such an impressive analytical mind, you could write a fabulous book about your journey to recovery.
Whether we like it or not, agree or not, the reality is the only way the medical community at large will ever learn more is if there are lab result comparatives.
Those who have been to Germany and have pre-treatment lab results could enhance the value of your wonderful pioneer journey by documenting your results through lab testing.
If we could get enough who do it and post about it we could start taking the information to our doctors in an effort to build interest and buzz about it.
Just a thought.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I've thought about it .... but with six kids, two in college, and having had massive medical bills the past couple of years with two of us having had Lyme and flying to NY for treatment, I'm not doing it .... unless someone else wants to pay for my WB. I have thought about it though. I had 8 positive bands prior to treatment.
The only problem is, I had 20 months abx treatment after that positive WB.
I think the Bionic has gotten my LLMD's attention because it enabled me to get off abx and stay off them. The only thing I need him for now is thyroid meds.
I'm down to basically two symptoms - insomnia and air hunger. I also catch every virus that goes around, so seem like I'm sick all the time, but my immune system does fight off these bugs even if it's slowly.
The real test, I think, is symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I don't believe current lab testing can show whether a person still has Lyme or not, regardless of the treatment you've been through.
After my bite (and immediate illness), I got countless negative ELISA tests for Lyme. I then got a positive PCR test from a lab in NY state, and at the same time negative WBs from Igenex.
After two more years of negative WBs from Igenex, I finally got a positive. For the last five years I've gotten all negative WBs with a few indeterminates thrown in. I am still fighting this disease.
The reality is that current testing cannot tell you whether you have gotten rid of Lyme. Therefore, it can't really be used to judge the effectiveness of treatment. (including the Bionic)
Posts: 443 | From The Wild West | Registered: Jan 2002
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posted
i just got tested again on tuesday... results next week?
but my thoughts are- if you feel good, then who cares what the test says...i had lyme in me 15 years...but never got sick till i was bitten again in summer 07. then was still negative for 8 months as i got sicker. i will post my test results when they come in. i agree that the blood tests are a crapshoot.
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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I have thought about it though. I had 8 positive bands prior to treatment.
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