posted
hello---i've just discovered this page and have been doing some reading. was dx with multiple sclerosis march 1987 (symptomatic 1986). added holistic doc to my medical team 10-2006. stopped some traditional meds and started low dose naltrexone (not fda approved) and large variety of supplements based on deficiencies noted in lab results.
june 2007, she tested me for lymes and lab resulted in several positive bands/coinfections. (this is new to me so my terminology is probably not accurate) i started the full cowden protocol in july 2007.
did 2nd lyme test end of 2007. i see lmd tomorrow, but she emailed me this and i truly do not know what it means--
"The IGenx IgM test band 51 is positive, 83-93 is positive, 31 and 41 are border line now so the results are negative. IgG band 30 is positive 31, 39, 41 are all border line also negative. The bands change as the lyme goes through cycles so for now it looks as things are slowly but surely improving. Which makes it a hurdle when we want insurance to cover rocephin we can still try officially and see what they say let me know."
i find this to be very confusing---i no longer know if i have ms, lymes, whatever! also, we were considering moving to antibiotic treatment. not sure what we will do, but will blue cross blue shield pay for that?
i sure would love to get out of this wheelchair!
any answers/clarification u can give me is appreciated. thank you!
-------------------- grape
*DX w/ MS March 1987 *Tested + for several lyme bands and erlichea July 2007 *Full Cowden protocol 7/07 - 4/08 *2000mg tetracycline since May 2008 Posts: 18 | From maryland | Registered: Jan 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi GrapeK,
You have positive lyme bands. Some are very specific to the species (31)(83-93). Some of your bands are not positive, but not negative either.
The Doctor seems to be saying that she would like to do IV antibiotics and/or your natural practitioner has suggested that to her.
She is saying that in order to get insurance approval, you have to have more positive bands (in her opinion), but she would be happy to submit to your insurance co. a request to start IV anyway, regardless of bands present.
This is the way I understand the situation from your post. Someone else might be along to help you out who has more knowledge than me.
Just wanted to move you up....and welcome!
Posts: 3975 | From usa | Registered: Aug 2007
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posted
thank you! it will be interesting to discuss this with holistic doc tomorrow. not sure i should call her llmd, but i know she has been in consultation with an llmd in northern va as she treats another lady who was previously dx w/ ms and subsequently dx w/ lymes. this particular pt did make it out of her w/c after 18 mos of iv antibiotics---gosh---that is awesome but such a lengthy process. this is why we r now looking at the possible use of iv abx.
-------------------- grape
*DX w/ MS March 1987 *Tested + for several lyme bands and erlichea July 2007 *Full Cowden protocol 7/07 - 4/08 *2000mg tetracycline since May 2008 Posts: 18 | From maryland | Registered: Jan 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
WELCOME grape drink, Just to say welcome aboard AND to say tests,, as doctors KNOW them,,, are mostly worthless for THIS disease.
Dont bet the rent on the tests,,,they are notoriously wrong(false negatives). IF your LLMD isnt dx you primarily on sx,,,you dont have the right one!! MOVE ON!!
There are other and better LLMD's out there IF you need them!!You are only negative for CDC 'reporting' guidelines!!! NOT what to treat!!
Hope that chair is not needed sometime soon also!! Tommorrow is the first step of the longest, twistiest, and bumpiest ride of your life!!
Glad you found this site,,,best around!!WELCOME!!!from --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
thank u allfor responding---feelfit, bettyg, lymetutu, just don! i haen't figured out yet how to respond individually, but i will in time.
i have good info to read after i log off so i think i will be learning alot tonite. yep yep--i do better w/ hardcopy!
is there a listing of llmd's that i can look at? i guess i'm still in a state of shock over being told i tested + for lymes (back in july 2007). i actually had a hard time believing holistic doc even tho i jumped right onto the cowden protocol. i think very highly of debbie---i have learned an awful lot from her about how the body should 'work'.
i appreciate your help and your clarifications. i will keep looking and reading!
-------------------- grape
*DX w/ MS March 1987 *Tested + for several lyme bands and erlichea July 2007 *Full Cowden protocol 7/07 - 4/08 *2000mg tetracycline since May 2008 Posts: 18 | From maryland | Registered: Jan 2008
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*)! I have seen people get out of wheelchairs, the longest someone was in prior was 4 years... it does happen*)!*)!! I believe MS is Lyme, period, from what I have seen.
WELCOME*)!*)! @)*!*)!*)!*)!* Bestest wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Welcome to the board.
My LLMD would say what are your symptoms????
Do you have Lyme disease symptoms?
Then look at the Western Blot and treat, treat, treat.
My LLMD treated me with only (Quest) one positive Lyme band
Based on the fact I had 55 out of 75 symptoms.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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