posted
Hello, I am a 31 year old female with a healthy immune system (according to my immunologist), however the last 6 years have been littered with health challenges.
I've had mono twice, and shingles resulting in post-herpetic neuralgia (going on 2 years) to name a few. Recently my GI and Neuro problems started acting up further after a rough summer of viral infections.
It took me 1 month to "bounce back" from standard food poisoning in August. My fatigue and pain have also increased. Due to this, I'm in the middle of ruling out many things between a slew of doctors: Immunologist, GI, Neurologist, ID.
Everything is coming back fairly normal, but I don't feel and am not functioning normally (since 2010). My health is slowly declining even though I have changed my entire life to manage it, and I can't seem to stop it.
My most recent WB Lyme test came back negative (no surprise) but I do have several antibodies present, one of which I've read is Lyme specific. I am hoping this is the key.
Looking for a LLMD infectious disease and neurologist. Any other advice is much appreciated as well.
Thanks so much!
-------------------- Undiagnosed Damsel Posts: 3 | From Northern Virginia | Registered: Oct 2016
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I don't know of any Lyme-literate neurologists in VA.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
posted
LLMDs who specialize in infectious diseases are rare.
Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Here is a link for you to read about "Two Standards of Care":
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Post your Western Blot results here and we will tell you if it looks like you have lyme.
See this quote from Burrascano Guidelines:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands." (page 7)
Often a person is told that their lyme test was negative but it has sufficient evidence of lyme for a lyme specialist to diagnose them with lyme and begin treating them.
So, don't look for a " LLMD infectious disease and neurologist." Instead, ask for a very good lyme specialist.
There is a very good one not too far from you. Let me know if you want the name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
private message sent! check your inbox!
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Hi - thank you! I would definitely love the name of the doctor you have in mind. From my research (and what you posted below), I believe I would be considered positive by everyone except of course the CDC.
The antibodies that have come back abnormal for me were:
IGG P66 IGG P41 IGG P39 IGM P41
Thoughts?
quote:Originally posted by TF: Post your Western Blot results here and we will tell you if it looks like you have lyme.
See this quote from Burrascano Guidelines:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands." (page 7)
Often a person is told that their lyme test was negative but it has sufficient evidence of lyme for a lyme specialist to diagnose them with lyme and begin treating them.
So, don't look for a " LLMD infectious disease and neurologist." Instead, ask for a very good lyme specialist.
There is a very good one not too far from you. Let me know if you want the name.
-------------------- Undiagnosed Damsel Posts: 3 | From Northern Virginia | Registered: Oct 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
What lab did the test?
Posts: 9931 | From Maryland | Registered: Dec 2007
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I'm scheduling an appt with LLMD - assuming they'll want to redo it with igenex or stony brook. Is there a difference or preference between the 2?
-------------------- Undiagnosed Damsel Posts: 3 | From Northern Virginia | Registered: Oct 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
A good lyme doc will test you for the coinfections through a good lab at the first appointment. You need to find out all the diseases the tick bite gave you.
If it is a good doc, I suggest you go along with the lab preference of the doctor. No sense arguing over Igenex or Stony Brook or other good lab. You can ask the doc why he/she prefers the lab they are used to using. You can learn something that way.
Posts: 9931 | From Maryland | Registered: Dec 2007
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