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Once bitten, twice shy
Regular Member


Date Joined Aug 2011
Total Posts : 30
   Posted 5/6/2014 9:29 AM (GMT -6)   
Hi, I was diagnosed with Lyme disease back in 2011, did oral abx and IV abx, they are now telling me that all of my neurological symptoms are MS. My question to you is how did you know when your Lyme was gone and you were dealing with MS? I just finished a course of IV steroids and I feel worse. I'm afraid that I am still dealing with Lyme, although my last 2 test have come back negative, but could they be false negatives? and that treating the MS is going to make me worse. I am so dizzy that I am not able to drive and walking is becoming harder. My body is extremely weak. Anything you could tell me would help that you have done in your treatment. Thank you

gypsy2014
New Member


Date Joined Dec 2013
Total Posts : 6
   Posted 5/10/2014 11:23 PM (GMT -6)   
Hello! I too have Lyme that created MS in me. I have done oral and IV abx and still feeling terrible and deal with vertigo on a daily basis. From all my research IVIG can really help, so I am trying to now do that. Have you done MRI and see that you have lesions? maybe suggest IVIG to your doctor and read on it if you haven't done it. Good luck! Hang in there!!

Once bitten, twice shy
Regular Member


Date Joined Aug 2011
Total Posts : 30
   Posted 5/11/2014 8:46 AM (GMT -6)   
I've had 3 MRIs and have 4 lesions. I haven't heard of IVIG what is it? Hope you get well soon

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 5/11/2014 9:38 AM (GMT -6)   
IVIG = intravenous imunoglubulin. It is a blood product. It's a plasma product. It's essentially made from antibodies from white blood cells. It is a somewhat controversial treatment. It's "off-label" so it can be difficult to get insurance to cover it. It takes about a thousand donors to create one treatment and so one IVIG infusion can cost $10,000.

Insurance usually only considers paying for it when other therapies have failed or weren't tolerated.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Once bitten, twice shy
Regular Member


Date Joined Aug 2011
Total Posts : 30
   Posted 5/13/2014 6:38 AM (GMT -6)   
So I went to my neurologist yesterday and he has dismissed me, saying we need yet another opinion that would make 7 neuro, My ID hasn't returned any of my calls so she has dismissed me that will make 4 ID drs. What happen to doctors wanted to help their patients, when did it become all about the money. I am so frustrated, I have been ill for 3 yrs and 1 month am not any any medications and getting worse by the month, I am at a lose of what to do. My knees ache like they are freezing form the inside out, the dizziness is so bad that I no longer drive, I'm 49 yrs old and have lost my independence, I feel like I'm shaking inside but my husband tells me not on the outside. I can no longer work because the fatigue is so bad. I know it can be a lot worse, homeless, no food, bedridden, etc. I just wish I can find some answers. I live in Florida and I believe I'm going to go to Shands although I haven't heard to much good about them. I just don't know
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