Help, lab found EIA (Lyme IgG/IgM Ab) positive at 1.16, WB P18 IGG Ab positive and WB P23 IGM Ab positive. I was bit app 17 years ago, embedded and ER visit for removal by some type of laser. 90% of my peripheral vision is gone, rest of vision is horrible w/floaters, blurry + more, taste, smell, touch impaired. I can hardly get out of bed in am, bones and muscles so bad that I cannot pull covers up nor turn over at night. I finished 1 month of doxy. on 1/4/8 and ID doc is of no use, neither is neurol who thinks I need hormone work up. I feel as if I'm slowly dying. Oh yes, I believe this monster is also responsible for my other dxs, i.e., fibro, CFS (+ for 2 Epst.Barr in 05), liver problems, osteopenia, osteoart, hypertension, gastro issues (was unable to eat in a.m. for over a year) too many to list. Sorry for rambling, cognitive issues are huge, but don't know what to do. I live in SW FL and have been to 3 Rheum., 3 Neurol, 1 Inf. Dis. Oh yes, last Rheum did not know of lyme dx and did CT angiogram which showed "mild vasculitis" with moderate narrowing of parietal branch on both sides. I was on Imuran then Prednisone (mostly 40 mg) for 1 year. Thanks, in advance, for any suggestions.
Posted by adamm (Member # 11910) on :
You need a Lyme-literate medical doctor (there
are fewer than a hundred of these guys in the country).
Your symptoms alone would be enough to get you treated
by one of them, so you should post in seeking a doctor and
check the Lyme Disease Association's online referral database
(although I think I'd run the name of any doctor you find in there
who's not an ILADS member by the support groups in his/her
area; I just saw one
from that list who didn't know a thing about Lyme.)
Oh, and make sure you don't let them give you any more
steroids---those suppress the immune system like nothing
else and are death for Lyme sufferers (one of the best LLMD's
actually employs the term "steroid disaster")!!!!!!!! Posted by Michelle M (Member # 7200) on :
Welcome, Ginny. I'm sorry you are suffering so. You've really run the gamut of doctors -- like many of us here.
A whole year of Prednisone -- Whoa~!! That suppresses your immune system and causes the lyme bacteria to have a grand time!
You MUST find a way to get to an LLMD, fast. Please do post in "Seeking a Doctor" for the closest one to you. Sounds like you may have coinfections as well? I'm sorry the medical system has let your health deteriorate to this point, but with lyme it's pretty normal, unless you are being cared for by an LLMD.
Hope you can find one and start aggressive treatment soon.
Best,
Michelle
Posted by CaliforniaLyme (Member # 7136) on :
Yes, it does sound like you belong here!!! I xerox everything Michelle M said!!! Best wishes, Sarah
Posted by sixgoofykids (Member # 11141) on :
Welcome! You've come to the right place for help.
Please, see an LLMD ASAP!! He will be the only one who can properly treat you and get you well.
I was infected over 35 years ago and am well today. That is the difference an expert can make.
Posted by DakotasMom01 (Member # 14141) on :
Hi Ginny, Welcome to Lymenet. Sorry you have been through so much. The others have given you some great advice. Hope you find a good dr who can help you feel better soon.
Posted by mtree (Member # 14305) on :
hello ginny....
welcome aboard..... you have come to the right place..... its a start....
you must seek a lyme doctor.....someone on this website im sure can find you one where or around where you live.
come back to the website for comfort, and support!!!!!
mtree
Posted by tailz (Member # 10014) on :
The wireless boom is what caused my Lyme to take off.
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mtree