posted
I have been diagnosed with CFIDS, POTS, dysautonomia, depression, etc etc etc. Recently went to an LLMD who was "95% sure" I did not have Lyme but decided to do the CD57 test just to make sure.
Cd57 came back at 30, so she decided to do PCR lyme test and western blot. PCR came back negative. IgG came back negative/ind. IgM came back:
18+ 31++ 39+ 41+ 83-93 IND
Band 31 Epitope test came back positive.
My LLMD seems to think this is about as strong of a positive as I am likely to get and has moved from being 95% my clinical picture suggests CFIDS of another origin to wanting to treat Lyme. I /know/ I have candida problems as well so I am reluctant to start longterm abx therapy.
Would you consider these results "strongly positive" in light of a decade of disabling fatigue?
Posts: 9 | From MSP | Registered: May 2012
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from the Western Blot Explanation in the link above. There are many other informative links there.
-
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both." -- Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto to TuTu.
YES. Address it and also get assessed for other tick-borne infections.
With four positive bands, one double positive and some indeterminate . . . and considering that
Band 31 is very positive, coupled with your history and symptoms. It's very clear. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- [Must have been posted at the same time TuTu edited this into her reply above - or maybe my eyes just did not see that until after I posted?]
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks all. I have an appt this week with the doctor whom I love and trust so far. I will see what she recommends. At this point, after having been around the bend with a decades worth of allopathic and holistic treatments, special diets, supplements, tens of thousands of dollars worth of tests, etc etc...it is both a relief and scary to think that this might finally be the answer. I'm not sure I can afford to have high hopes for anything working well at this point...but I've definitely tried everything else, and I had my entire 20s stolen to fatigue and depression, so....
Posts: 9 | From MSP | Registered: May 2012
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posted
Yes, Keebler.. I edited my post!! Two ships crossing in the night.
erist.. many of us were misdiagnosed for years on end. Welcome to our "don't wanna join" club!
Info on a few of your bands:
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
--Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Thanks for information. She def wants to treat aggressively. I would prefer to start slower, since I am currently at about 50% quality of life, not 10% or so (where I would say let's do anything) - so oral abx to start instead of IV and working on some other vitamin and hormone deficiencies common to chronic fatigue.
I am still skeptical that "this is it" but at least it is a better starting point than all the other things I have tried...
Posts: 9 | From MSP | Registered: May 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Congratulations on finally getting your correct diagnosis! Now, you will begin to make progress.
CFIDS, POTS, dysautonomia, depression are all common among lyme patients because lyme causes all of these things.
It took me 10 years to get my lyme diagnosis. It is wonderful to finally get it. Your life will now change.
I completed my lyme treatment over 7 years ago and I am still symptom-free, enjoying my life. I got well using just oral antibiotics.
The doc is the key to getting rid of this disease. Can't emphasize that enough. Many doctors treat lyme disease, but only a few know enough to get rid of it for a person.
I strongly suggest you read and study the Burrascano Lyme Treatment Guidelines to educate yourself on this disease. They are here:
Then, you will understand what is going on with you, the course of treatment, and will also be able to evaluate your doctor's expertise. Very important to recognize when the doctor is no longer able to help you, is stumped, or has reached the end of their bag of tricks.
Posts: 9931 | From Maryland | Registered: Dec 2007
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