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    Old 02-28-2005, 08:28 AM   #1
    scampergirl
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    MS and Lyme Disease

    Has anyone here been diagnosed with MS then later find out it was Lymes Disease? I was diagnosed with MS about 20 years ago and the more I look into it the more I feel I was misdiagnosed. I was bitten by a tick as a younger child, probably around age 8. Does anyone know of MD that treats Lyme Disease in the Seattle area? Thanks in advance.

     
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    Old 02-28-2005, 08:51 AM   #2
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    Re: MS and Lyme Disease

    I have heard of this many times. One of my best friends had Lyme years ago, they know told her she has MS, but she thinks the damage is from Lyme.

    MS is a symptom maybe of Bacteria either known or unknown, just not dx?

    Need some studies here.

     
    Old 02-28-2005, 10:02 AM   #3
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    Re: MS and Lyme Disease

    hi scampergirl
    welcome aboard.
    i suggest you look up igenix labs in palo alto california and ask if they test for any drs in seatil area.
    good luck
    jon

     
    Old 02-28-2005, 10:29 AM   #4
    ncgirl88
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    Re: MS and Lyme Disease

    Welcome to the boards Scampergirl and I am sorry about your diagnosis but I hope that it is not advanced. I can tell you that the more research I do the more I hear about people that have been misdiagnosed with MS that actually are dealing with lyme disease and since it seems they have no concrete evidence of a specific cause of MS I wonder more and more about what truly causes it and is it just misdiagnosed lyme. I know this is oversimplified but I can't help but wonder.

    There is a person on this board that I hope sees your post who was diagnosed with MS but was not responding to the interferon (sp?) shots he was being given. He started antibiotic treatment for lyme and he is improving.

    Please do not give up. I would not waste your time getting tested by any other lab other than IgeneX in Palo Alto. I was tested twice through LabCorp and Quest - even went to John's Hopkins...all the tests came back negative...turns out I have chronic lyme, babesia and ehrlichia and the IgeneX lab results were extremely positive.

    It is important to find an LLMD (lyme literate M.D.) - this person needs to be not only informed about lyme and tick borne coinfections but understand the most up to date treatment protocol. It is important to get tested for the following coinfections: Babesia, Ehrlichia, Bartonella, and Mycoplasms. If these are present treatment protocol will be different and should include addressing these first before lyme is aggressively treated or you could remain sick.

    Take care and don't give up until you are comfortable with the lab tests and you have seen a respected LLMD.

    All My Best. I am glad you have hope and are still seeking answers. Do not give up.

    -ncgirl88

    Last edited by ncgirl88; 02-28-2005 at 10:30 AM.

     
    Old 02-28-2005, 12:10 PM   #5
    Betterdaysforme
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    Re: MS and Lyme Disease

    Dear Scampergirl,

    About 4 years ago I too was diagnosed with MS by a neurologist. They saw a mark about the size of a dime or smaller on my C6. Three months later they went back and it had shrunk to pencil point size but he still wanted to say MS. He sent me to an MS specialist who said it wasn't MS. Eighteen months went by and my family doctor gave me valtrex to see if it might be a virus. I had a reaction after 2 pills and my left eye got real blurry and I could barely see. I was given 4 days of 1000mg solu medrol steroids and another brain MRI. I was sent home and told to decide which MS meds to go on. A week later I went back to the neurologist with the brain MRI pics and he throws his hands up in the air and says he doesn't know what it is because there are still no lesions on my brain. He sends me back to the MS specialist who now says yeah it's MS. I felt like I was playing good cop bad cop with the two of them. Neither one would believe it was the valtrex but I have since seen in black and white that valtrex can cause vision problems in rare circumstances. That would be me! By the way I told both of them that I had been hit on the back of my neck with a large branch from a dead tree when we were looking for property. They both blew that off too.

    I am also 57 (52 at the time) and that's a little too old for first time MS symptoms. Nothing had changed at all in the first 18 months of this until I took the valtrex but they wouldn't listen. I mean nothing had changed at all, my symptoms were there 24/7 and MS doesn't usually do that, it comes and goes. Another 2 years passed and an orthopedic surgeon did new cervical and brain MRI's on me and his neuro-radiologist said absolutely not MS. Thank God I never went on the meds. I also had had a spinal in the beginning of all this and it was clear. I kept going downhill and had a lyme test done and was told it was negative but band 23 was reactive. I know they tell you 2 or more bands must be reactive to be lyme but band 23 is consistent with lyme disease. An infectious disease doctor put me on Rocephin IV for 9 weeks until my liver enzymes went crazy and then pulled me off it. I was really making progress and was told the meds were working on the bacteria to make some of the symptoms away. I am now on oral meds (Doxy) and starting to feel spurts of progress. It needs to be a higher dosage but will discuss that with the doctor after next lab work. I don't think the orals work as quickly as the IVs. But I could not trade one problem for another. As long as the meds work that's my objective even if it takes a year or so with steady progress. After four years I can handle that as long as I'm getting well!

    What are the reasons they are saying you have MS. Lesions or spinal tap?
    Unfortunately MS is like lyme, no real definitive test. Are you on MS meds. If so is it helping? Hang in there and take all tests available for both diseases
    before you make a decision on which route to go. Keep us posted. We are all in this together. I hope this gives you another perspective instead of confusing you. We often say you need to follow your gut instinct and I know I did which is why I never went on the MS meds. Thank God!
    betterdaysforme

     
    Old 02-28-2005, 12:22 PM   #6
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    Re: MS and Lyme Disease

    Thanks for your responses, currently I am on Copaxone, which I held off on for a long time, but I truly do not know if it is working. My past history of attacks have typically been few and far between, so has the Copaxone worked or not I don't really know. The last attack I had was in September of '04, NOT FUN, it lasted for several months and left me unable to work full time.

    I like to look at alternative medicine. I was in contact with an office this morning and I will be going on Thursday for a test that will isolate problems. This office sent me a lot of fasinationg literature to read over the weekend, that is what convinced me that I may not have MS. They had also told me that 80% of people diagnosed with MS actually have Lyme Disease. That is significant! I had a test about 7 years ago for Lyme but it came back negative with the qualification that it could be false negative. Lyme Disease has always been in the back of my mind. Someone I know has rekindled my interest in finding out what is really going on. I won't give up on this one!

    You are right, they really don't know what MS is caused from, there are so many theories, just pick one! I think it is a big umbrella that if they can't diagnose what you have it gets thrown under the label of MS.

    Thanks for the encouragement!

    Scampergirl

    Last edited by scampergirl; 02-28-2005 at 12:26 PM.

     
    Old 02-28-2005, 12:48 PM   #7
    scampergirl
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    Re: MS and Lyme Disease

    My reasons for saying I have MS are the results of the MRI with lesions on my brain and spinal cord. Currently I have tingling in my hands and feet, some days are better than others. I have had optic neuritis and at times when it was very difficult to walk. I was first diagnosed in '86 but I had started feeling weird sensations before that. They showed up while I was in college, possibly the stress brought it to the forefront. Thinking back I had mono at about age 16 sore throat, tired,etc but it did not last nearly as long as th typical course of mono that you hear about. Could that have been the first symptom of Lyme? Seems like a lot of possibilities are coming to light that could in one way or another all be connected. I strongly believe that your body should be viewed as one entity and not just a foot, hand, etc.

    As I mentioned in my last post I am not so sure the meds are working. I have just recently come off of 12 months of IV Solu-Medrol and continuing with the Copaxone. I don't like taking drugs so I would just as soon be off of everything. If it is Lyme Disease I will follow the course of treatment to hopefully prevent any further damage!

    Scampergirl

     
    Old 02-28-2005, 01:18 PM   #8
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    Re: MS and Lyme Disease

    Hi scampergirl, welcome to the board! I am sorry you have been through so much. Some people who have Lyme were first diagnosed with other diseases, including MS. I defnitely think it is worth checking out any and all possibilities.

    Lyme disease can cause lesions on the brain, but I don't know if it can cause them on the spinal cord.

    I do not know of any Lyme doctors in Washington State. The closest one to you that I know of is in San Francisco. If you would like his name, let me know. I believe there is a Lyme support group in Washington state. Maybe you can do a search for information.

    Keep us posted on how you are doing okay?

     
    Old 03-01-2005, 09:15 AM   #9
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    Re: MS and Lyme Disease

    Dear Scampergirl,

    Unless you truly do have MS I cringe at the thought that you have been on solu-medrol for a year. What was the dose. Mine was 1000mg a day for 4 days (the doctor wanted 5 days until I ended up in the emergency room).
    My heart went crazy and the doctor in the ER said I had an irregular heartbeat that was named after the two doctors who discovered it but I can't remember the name of it. Anyway I now think it was the lyme reacting to the drugs. I read on a lyme website one time that under no circumstances should a lyme patient be given even the smallest doses of steroids! You can't get much bigger than what they gave me! Or you!

    The nurse that administered them (4 hours each day) kept saying that if I had MS the solu-medrol would be helping me. It did not, in fact I lost weight and couldn't get up off of the couch for weeks. The complete opposite of most people's reaction to steroids. Of course after all of this I told you the neurologist who from day one insisted that it was MS now didn't think it was!

    My sister works for an opthamologist and although you can have optic neuritis with MS, you can also have it with other things such as lyme. If you do nothing else than for peace of mind please seek out a test for Lyme.
    I would be so angry if I discovered that I had been on MS medicine for all of those years only to discover it was lyme. I truly believe the solu-medrol gave access to the rest of my body by inhibiting my immune system that I became much worse after it. I only had left side minor problems for 18 months and then the steroids and whammo it has been downhill ever since.
    I feel at peace that I am on the right track and can only pray that the doctor's advice has not put me out of reach for a full recovery. I even told my husband that if I went into a coma ever - DO NOT LET THEM GIVE ME STEROIDS!

    Do you feel you benefitted from the solu-medrol or got worse? I didn't know much about MS except for the initials until I was faced with it but the more I talked to people they either had it themselves or knew somebody who had it.
    Sounds fishy to me. I started feeling as though if it were neurological and they couldn't figure it out then it was MS. I started referring to it as the "designer disease". I even got to the point that I thought they were doing this to get more research money. Pathetic! Where's the research money for lyme?
    Probably in every other disease's research kitty that has louder more powerful doctor's voices. Make's me sick, literally!

    Please be tested! Keep us posted. Good luck on your quest.

    betterdaysforme

     
    Old 03-01-2005, 02:41 PM   #10
    Carl Erik
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    Re: MS and Lyme Disease

    Greetings Scampergirl
    I am the person that ncgirl88 was referring to in regard to MS and Lyme. Unfortuately, I was diagnosed with MS in 1996 and started interferon injections in 1999. My MRI of the brain and spine showed lesions and my symptoms progressed year after year. I saw Dr Singleton last August for alternative therapy ideas only. He tested me for Lyme even though I told him of my negative test in 1996.

    I came up positive on the Western Blot IGM. After stopping the interferons and starting an agressive course of antibiotics last November, I began feeling better. The therapy of IV Rocephin, oral Zithromax, and Flagyl. I am now on Biaxin, Ceptin, and Flagyl.

    There was hope even after years of denial because almost every doctor that examined me since 1995 said that I didn't fit the profile for MS. The MRI was the only thing that pointed to MS when I tested negative to Lyme. Since that point doctors were comfortable treating me for MS. When my symptoms for what they thought was MS first started (visual abnormalities), they performed a spinal tap on me that ultimately came back negative for MS. It should have been positive but they never tested me again.

    The symptoms for Lyme can mimic MS along with MRI findings. Keep seeking an answer until you have exhausted your resorces - even if doesn't make scence.

     
    Old 03-02-2005, 08:37 AM   #11
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    Re: MS and Lyme Disease

    Good Morning to all,

    In response to some of your questions; I was on 1000mg of Solu-medrol/month for 12 months which just ended in December. Prior to that I have had several rounds of steroids since diagnosis in 1985, those at times included oral prednisone until they came up with IV Solu-medrol. When I was on the IV it was a course of 1000mg/day for 5 days. Sometimes they worked sometime they didn't

    In September of 2003 they absolutely did not work, I kept going downhill. I felt like I was falling and did not know when it would stop. Finally after 3 months I changed doctors and he put me on another round of steroids and I did respond. Maybe I would have naturally been on the upswing anyway. At that time I also started the Copaxone, I was not interested in the other MS drugs because of their ability to destroy the immune system. I have never fully recovered from any of my attacks but I am grateful that I am still mobil and can do most things within reason.

    The only diagnostic tool used other than clinical symptoms was the MRI, I have never had a spinal. Perhaps having a spinal would have shown more. Sometimes I think I have Lyme but I read other things and other peoples experiences and I think maybe not. Not everyone reacts the same to things though.

    Carl Erik, I too am looking at alternative therapy, I am going for a test next week that will show if I have Lyme. If I need further information where is Dr Singleton?

    Thanks to everyone this has been very helpful, I will keep you posted on my quest. I feel as though I am on the right track to get the answers I deserve. (selfish me)

    Scampergirl

     
    Old 03-02-2005, 09:13 AM   #12
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    Re: MS and Lyme Disease

    Dr. Singleton is in Washington, D.C. and I have heard he is awesome.

     
    Old 03-02-2005, 01:46 PM   #13
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    Re: MS and Lyme Disease

    Scampergirl: Good luck next week on your test! And you're not "selfish"! You DO deserve everything good, as we all do, going thru this disease! Let us know how it turns out!

     
    Old 03-02-2005, 04:46 PM   #14
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    Re: MS and Lyme Disease

    Sorry for the delay in responding to your post. Although Dr. Singleton's main office is in Washington D.C. he also has a practice near Baltimore. I saw him last Tuesday and he want me to consider a therapy by Dr Patricia Kane in PA. He said that she is one of two experts nationwide that provides a therapy that has proven benificial for ALS, MS, and cancer patients. He fully supports their work and promised me that he is in no way affiliated with her nor does he receive kick backs. I'm looking her up now and found her research interesting. Let me know if you want more information. Singleton talked to me at length about her work.

    He told me that he is moving to the Baltimore area in May. At this time he only sees patients once a week in his Baltimore office but will incease that to three times a week in May.

    Take care ... Carl

     
    Old 03-03-2005, 06:56 AM   #15
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    Re: MS and Lyme Disease

    Unfortunately that is on the other side of the nation for me, I live in Washington State.

    Thanks for your response however.

    Scampergirl

     
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