posted
Your igenex is not really positive. I would personally run all viral labs and see if it might be the problem. Also try other bacterial infections and maybe mycoplasma ( I have no idea about those though)
I believe timaca here has lots of experience with it .
Its not always lyme imho
Posts: 856 | From MA | Registered: Jul 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I would run Fry Labs testing for both the Smear test for the bacterial infection and the Protozoan. Two separate tests.
Lots of people might have marginal Lyme but still have Vector Borne Illnesses...
In the end its better to know what you test positive for so you can direct treatment.
Then too.. alot of those treatments can cross over and treat lyme if it is indeed there..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Hi Mel - question - you said you have lab tests from Quest and IGeneX, so I'm assuming you did the IgM and IgG Western blots thru IGeneX?
Tests don't always show up positive even tho we have Lyme. I don't think this doctor is an LLMD, since LLMDs treat clinically, by history and symptoms. You have symptoms.
I suggest you make a post in Seeking a Doctor here for a list of LLMDS to be sent to you.
Posts: 13116 | From San Francisco | Registered: May 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I gather you have a previous diagnosis of lyme? What type of lyme treatment have you had in the past? Have you had co-infection testing? Is the LLMD that you saw a member of ILADS?
As Robin said, negative testing is not unusual even though you may still have lyme disease. Did anyone do an abx challenge prior to your testing through IgeneX?
If I had previously had lyme and had a full work up to exclude other likely causes for my symptoms, I'd find someone who would do an empirical trial with abx and co-infection protocols to see if I had a response.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
The doctor I saw was given to me from a list from here..Im sorry but I am not going to settle for "its all in my head" I have never been a depressed/anxious/worried person..this is not normal for me and for it to come on suddenly..I just dont know....
Posts: 29 | From CT | Registered: Sep 2009
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quote:Originally posted by meloctober: The doctor I saw was given to me from a list from here..Im sorry but I am not going to settle for "its all in my head" I have never been a depressed/anxious/worried person..this is not normal for me and for it to come on suddenly..I just dont know....
I dont believe its all in your head either. But there are many many reasons beside lyme. Lyme and Co is bacterial illness , which is attacked with antibiotics. It wont do you good if you have viral problems
It is likely it is more than one thing - but you need more tests .There are some inflammation indicators which you can see trough blood tests (vegf, c3a/c4a, cd57 etc). Run heavy metal tests ,run viral titers. Hopefully you might see a pattern there which could point you to the most likely root of your problems
Posts: 856 | From MA | Registered: Jul 2009
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posted
I have lyme and my IGenex results weren't too different from yours although I don't have them memorized. I had some IND bands that are considered lyme-specific. Tests, even Igenex tests, sensitivity at best is in the 70%s. To be considered as a diagnostic tool, it needs to be 95% or better. We are just not "there" yet testing-wise.
You have a history of exposure--- more than that, a history of testing positive and remembering the welt/bite.
more than that: a history of lyme.
plus current clinical symptoms.
I don't know who you are seeing, but I'd find another lyme doctor for assessment if I were you.
and like coltman says, be assessed for other infections, viral and bacterial. More than one thing could be part of the picture and a more integrative lyme doctor would work to your benefit.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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quote:Originally posted by meloctober: The doctor I saw was given to me from a list from here..Im sorry but I am not going to settle for "its all in my head" I have never been a depressed/anxious/worried person..this is not normal for me and for it to come on suddenly..I just dont know....
Definitely do not settle for that answer Meloctober. I wouldn't either. So many have been right where you are and understand.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thank you for filling us in on your history. So sorry for what you've been through. Unfortuantely, so many here have similar stories.
A good LLMD (get an ILADS member), will do a differential diagnosis. This means they will look for all kinds of things besides Lyme. I had viral testing, mold testing, co-infection testing, nutritional status testing, thyroid testing etc. etc. etc..... You need a good diagnostician.
A great book that helps to understand the situation with Chronic Lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced Lyme disease. The book covers a lot, history, science and her personal story and a few other personal stories.
Wishing you the best. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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