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  • so sorry you suffered thur that , but very glad to hear things are much better
    Hey Judy!
    I haven't seen many posts from you lately and was wondering how you were doing and how things were going. I hope all is well with you.
    Take care and let us hear from you soon.
    Love and hugs!
    Her speech is no longer very good, and she gets around the house some with a walker, but very limited. Just recently she has become unable to do stairs and I carry her up and down - Wasn't doing them well before, but just had to steady her then. Not very easy for us to access the drug trial here, and we are hoping to get more or less the same effect this way as the trial. Seems like many on this forum don't draw a connection between lyme and als, but seems like a possibility to me. Even if there is not, at least we have something to try. I was wondering the other day after reading your posts - do you know when the trials you are in will end, and what happens if they decide to approve the ceftriaxone as an als treatment? Sure would be nice to make insurance pay up on the drugs.

    Hi Judy,
    Leah has been bouncing around some with iv's. Her dr. switched her onto azithromycin, and then to cephotaxime (not sure I spelled those right) for awhile. We asked her the other day to go back on the ceftriaxone, and started up again with that yesterday. I see your posts once in awhile, and it sounds like you are actually improving a little. That's great. Appreciate you sharing what is happening. Leah was on the ceftriaxone for about 4 months, and seemed to be in a holding pattern until about 3 1/2. She kind of dropped off quickly then, and dr. decided to try some other iv drugs. She is a lyme dr., and there are not many around here. Seems like since january Leah has fallen off a lot. (Told me I had too many words so I'll post another pm.)
    Hi Judy Hope your day is good, we are keeping the long tube for now. Will be getting in touch with a nurse at the VA, per doctors recommendation, and then will see doc again in a couple of months. This doc we saw was honest with us and said he really didn't know which tube is better, so he told us to talk to the "expert" his nurse, who was on vacation. At least he was honest!!Hugs Lori
    I just wanted to add that Lyme patients experience numbness, weakness in legs, lameness, Bell's Palsy, twitching and so on because the neurotoxins produced by Borrelia burgdorferi. Lyme patients experience very similar symptoms to ALS patients.
    I 100 % believe that there IS hope for ALS sufferers. There are people on youtube discussing healing strategies for Lyme. I believe that if people that have been diagnosed with ALS treat themselves followed the protocols of LLMDs that will become well.

    I recently learned about the heated controversy between the International Lyme and Associated Diseases Society and the IDSA. I will just say that ILADS is the side which has human compassion and the IDSA are the side that doesn't lose a night sleep over throwing a human being away.
    Hi. My name is Ginny, I have Lyme disease, and my husband posted a little of my story on this thread. I wanted to say that I have become convinced that diseases such as MS, ALS, CFS, FM, RA are infectious diseases. I say this because I have had symptoms of all these diseases. The mainstream medical system seemed very content just to let me free fall into a hell on earth. Most of the infectious disease doctors in my area will not accept Lyme patients because of all the political controversy regarding treatment. There is a documentary out recently called "Under Our Skin" that dives into all the politics and corruption which get in the way of helping Lyme patients. It also gives passing mention that some research scientists believe that ALS may be caused by a strain of the bacteria that cause Lyme disease. You can find the trailer on youtube... just make sure you include the word Lyme in your search.
    Judy i just found your message and will read those side you recommend i have as you know problems white my right foot. i agree that drive in Europe is sometimes grassy a specially in the big cities like Amsterdam or Paris and Rome. No here on the country is not a problem but even the nearest city Groningen has the same problem as into Amsterdam. Too many people here in a small country more than 17 million people we have.
    Enjoy your day i go to bed been tired after a long day up.
    Hello Judy thanks for your replay today the revalidation doctor visit me and give some logic simple suggestions for my right leg that leg gives the most problems. After a long day i been tired but thats normal we must give more energy too do something.
    The doctor were also positive about my trial so there been no problems anymore to do it.
    I wish you a nice day en see you again
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