misdiagnosis
 

HI, I'm not sure if this is the place to post a new member message or not; but anyway, I read an entry that was so similar to m situation, it was amazing. Eight years ago I was diagnosed with fibromyalgia; tried multiple treatments, then finally was talked into having surgery, a cervical lamenectomy on c2-c7. This operation about killed me. My neck has not been the same since, in fact, the neurosurgeon, Dr. Michael Rosner, was disciplined for performing this operation on 98 people. A class action suit evolved but I decided to opt out because there were 3 people who had become paralyzed from the neck down, and I was one of the lucky ones; so I felt I didn't want any money that could instead go to the paralyzed patients. Anyway, I got not relief from the fibromyalgia type symptoms. Next I was diagnoses with MS and treated for six years. I had to quit my jobs as school principal and adjunct professor and am considered disabled now. My symptoms continued to worsen; I continued to research the internet, trying to find out something, anything, when I ran upon a lyme disease list of symptoms, there were 28 items and they all described me exactly. I went to Pittsburg,PA to a Fibro/fatigue center, I was given a western blot test and the results came back positive. I now have a decision to make, should I continue with the oral antibody treatment in PA or switch to a SC doctor who is using long term IV antibodies, this treatment is controversial but I have talked to 3 people who say they have been helped tremendously by this IV treatment. If anyone has any experience with this type of dilema, I would greatly appreciate any advice, Thank you , Phillip Elliott, Bakersville, NC

welcome philip~
 

welcome & hello dear philip,

I do not believe we have a forum for that legal assistance issue,
yet we do have one for Fibromyalgia and Chronic Fatigue -
link:
http://neurotalk.psychcentral.com/forum12.html

Hi, Welcome to the group,
 

I had test for Lyme Disease about 4 months ago and it was the hardest thing to get done in this area.

My Allergist thinks I have it so he had my PCP to order a test. I went to the hospital they didn't know how to do the test. I went to a lab and a new paper had to be done by my PCP to order the right test. There are a lot of test for Lyme disease. Anyway he looked up the test and picked the one they wanted and it was done and came back unfinished. Don't ask me why. It was sent to Denver and they didn't even finish the test but gave no reason why so I didn't want to deal with it anymore. I have so much going on anyway, it would have just been something else I couldn't take the medication for. LOL

I sure hope you find the help you need here, I believe you will find some good answers on meds and things you can do to help get better.

Glad you found the forum.

Ada

thanks
 

HI, thanks so much for your reply. On March 14, I go to SC to a Dr.
who supposedly has been very sucessful in prescribing long term IV daily treatment for lyme. I am to the point of having a goal of "not using a wheelchair"; on the positive side, I have regressed in the strength of pain meds, going from 75 mg of methedone down to using only endocet; it's been a long battle but I refuse to go back on oxycontin or methadose; they were absolute slave masters who simply masked the symptoms of lyme and allowed the lyme to become chronic; affecting practically every bodily function. I understand I will begin 10 months of IV daily treatment in April, and I am so hopeful that this protocol will give me some relief. If I could just get to the point that I feel useful, I think my motivation could improve along with everything else. I wish you the best and hope to hear from you again. Thanks, Phillip

Hi Phillip,


:welcome_sign:. Two friends of mine have both had lyme and have both undergone treatment and improved. I dont know if it was with short or long term antibiotics. I wish you luck in your decision and your treatment.

And please know that you should not feel useless. You have already made a contribution here today at NT by saying hello. So I hope to see you around the boards more often.

:hug:

Hi Phillip and Welcome to NeuroTalk. Glad to have you with us, so make yourself at home and take a look around... :welcome_sign: