posted
saw a dr here in florida that only uses central florida labs..he tested for lyme only and no co infections and i tested negative...i tested positive on igenex but he said he doesn't trust igenex for lyme only for coinfections yet begged me to bring my igenex testing results before coming...
anyway..i have had a high dose of steroids and after that i went totally down hill...i had adrenal failure as well and now i cannot get off them...could this have caused a false negative result??
also..this dr said this is the only test he trusts and when i tested negative, he dropped me and wouldn't even return my phone calls.
any thoughts on central florida research labs?? and any possibility i am so ill not mounting antibodies and having been on such high dose steroids..affecting the test???
thx
thanks..
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Lyme is a clinical diagnosis first and foremost. Testing may be supportive and helpful but often inaccurate.
What are your symptoms and what did the doc say about your symptoms?
What were your Igenex results?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
even central florida labs?? this dr feels they are the best lab and will pick up every case and also will not test for coinfections...like bart.
He said never heard of dr F in AZ and that his lab is not legitimate esp if he is making profit off of it.
oh...yes i believe it is a clinical dx but this dr did not
oh,,i have too many symptoms to list but all of them are lyme like and come and go....but now more coming than going ;(
Ive been sick for 15 years and got lyme diagnosis by dr H in NY 4 yrs ago and confirmed by several other llmd's.....
igenex was positive igm and negative/indeterminate igg
that was 4 yrs ago.
thx for your reply
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Drop that doc ASAP. I know I'm going against the grain, but something always seems off with Igenex to me. We all have our opinions, but they put out a LOT of positives. Yes, some here say they were negative to a degree, but..... I HATE their ties to LLMDs too. I view it as a conflict of interest.
Until Igenex comes up with a STARI strain specific WB, I have reservations as this seems like the big variable other labs supposedly don't test for. They almost have an obligation to do this IMO.
The bottom line is Lyme still can be a clinical diagnosis so find a better doc. You know if you're ill. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
that doc dropped me ;( so that is done with.
problem is i have no more money to seek a llmd who doesn;t take insurance and i have a very complex case with many compounding conditions and have no support or help at all and have severe cognitive issues and can't even talk on phone too much to even advocate for myself and get what i need including a dr due to lack of money and also due to my "supports" either not beleving in chronic lyme or believing in it or not thinking i have it so i am left to my own devices to try to get help for myself...been like this for 4 years and i have just gotten sicker and sicker.
Thx though for your confirmation of this being a clinical dx and i have had so much steroids in me, my body is probably not mounting a response to anything.....
That dr never called me back and said they cannot help me and find another dr anyway ;(
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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posted
Yes, the steroids can affect your antibody response. They may have in my case. Lyme had also had plenty of time suppressing my immune system by the time I was tested.
Hardly anyone uses the lab in FL. I know little about it.
Igenex is a valid lab. We have people show up nearly everyday who are negative thru Igenex. I was one of them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Did you get copies. I would want to see them. If in
fact you did have specific bands and were just told
neg. When I went to pick mine up my doc told me
neg. I don't think you have lost much and you will
most likely find it was the best thing.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I have copies...i was told by several drs that too many people come up positive on igenex and they don't trust that lab.
I had specific bands to borellia that only would have had if i had a vaccinne so yes specific bands..
thx for the info guys
do you know for fact hardly anyone uses central florida labs..wasn't that formerly bowen??? that is what that dr told me..it is the most sensitive and reliable test around for lyme...from his words
not sure what to believe anymore..i just know in my heart and head what i have but my support does not agree and they want to put me on a quest to finally find out what is wrong with me since i am not getting better but never got up to a full amount of any abx because i herxed too bad..does that tell you something???
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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posted
Docs that say these things about Igenex are not likely to treat lyme adequately.
And you are a difficult case, the kind that hardly any doctor wants in the office, because of the risk.
Posts: 8430 | From Not available | Registered: Oct 2000
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Are you saying you had 31 kDa band positive? 31
was used in making the vaccine and is deleted by
the CDC because that was what they made the
vaccine out of, but it should not be dismissed.
It is the outer surface protein. The little bit
of material that says Lyme no doubt. Unless you
had the vaccine. In either case it is possible
you could have Lyme.
Have you posted in seeking a LLMD in XXXX in
seeking a doctor page. Prayers for a great LLMD and
a easy road.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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