NotALS!
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  • I have read your posts with interest. I see many posts are then "closed" - some abruptly. Not sure if you are still actively watching the forum, or if you have been "banned" (I read elsewhere that some prior members are banned when their posts become too controversial). FYI - my husband was bitten by mosquitos in PR in 2/2015, then was treated for Lyme's (had the bite and the whole gamut) in 6/2015, then was diagnosed with ALS in 12/2015.
    It is incredibly hard to find a dr who will try ivig even with positive results with rocephin. IVIG is a very expensive drug and most insurances don't want to pay for it. I'm sure they don't encourage drs to prescribe it. My advice is to check out Lymenet.org and pursue your disease as if it was lyme. The only doctors that can get insurance to pay for ivig are neurologists, immunologists or rheumatologists. A lyme-literate neurologist in CT is Dr Katz in Orange. Lymenet members will also give you names of doctors. I have severe breathing complications so I also have a pulmonologist in my corner that backs up my neurologist as we continue to fight my insurance company for drug coverage. Good luck to you, let me know how you're doing!!!
    Thank you so much for all your posts. I just wanted to know how to go about asking a physician to try ivig for my mom. Insurance will not continue to pay for rocephin. Thank you.
    Where are you located and who is your doctor? I want to try IVig, same experience with rocephin.
    I had diaphgram pacer surgery on June 29, 2011. It has made a big difference in my breathing. Will be happy to answer any questions about that I can. I have had ALS for a little over two years and go to clinic at Duke University.
    Just wondering how you are doing since finding out its not ALS? Hoping you have been getting better and wondering what treatment you may be receiving.
    Hi. I found your postings on c.diff and thought I would just let you know that my 10 year old daughter suffered with c.diff for more than a year with three recurrances. She is doing well now but she takes Culturelle and Florastor daily and we will not take her off it. I believe those probiotics have helped to keep any relapses at bay. Best Wishes :)
    the second opinion said not ALS. He thought it was lyme and a neck injury. Im still deteriorating however. I can't climb stairs now.
    Hi. Just read one of your posts saying you might not have ALS and were awaiting a 2nd opinion. How did that work out?
    Hi Michelle. Not so good. I've been diagnosed with a blood abnormality, monoclonal gammopathy, which can develop into bone marrow cancer. I'm going to have a biopsy done next week and then further testing by a hemotologist. It's hard to stay optimistic. thanks.
    Dr Harvey has just passed away so Dr Martz is supervising the clinic again. Its worth a try. Their success rate is about 20%, which is better than 0!
    Hi NotALS....I was reading an older post you made back in Dec/Jan about going to Colorado to see the famous Dr. M. Can you give me more info on this Doctor and where he is located?

    Thanks!
    Hi twinmommie, thanks for asking. My c.diff is better so I'm slowly starting back on azithromycin. Just 2 pills gave me diahrrea again but my energy level was noticeably higher. I'm glad I'm responding to it. I'm taking alot of herbals but they don't seem to be doing much. Its getting harder to walk, I feel like I'm losing muscle in the back of my thighs. How long have you had ALS?
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