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  • Complications

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    Old 08-30-2007, 06:39 PM   #121
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    Re: Complications

    I just tried to close my eyes and imagine you on the piano and all I could hear was the hard drive of my computer. LOL I always wanted to play a piano or some instrument. Someday you will be back like before lyme.

    I hope your kids are not infected. I would be concerned about them too, especially your young daughter. But you have to think positive and be on guard at the same time.

    Hang in there, it does get better. Well, I hope so..... for all of us.

    How did they come up with MS? Well, my MRI 3 yrs ago showed 3 lesions and the current one 9+. The MRI was done with contrast and two of those showed up demylinating which means they were active inflamation. That along with my past history convinced the Dr. The clues in my past history were 15 yrs ago I began having pins and needles in my lt arm and face. This continued off and on till present. They maybe 5 to 6 yrs after it started one summer I noticed my L hand didn't feel hot water the same as my right. That lasted all summer then slowly got better. Then 3 yrs ago the tremors in the R arm began. I have had several "attacks" of these with other flu like symptoms. Muscles cramps, nausea, memory, problems with words, all coming on at the same time and intense. The first time it took me a week before I could even begin to be well enough to go to Dr.

    Then March I had another of these attacks. My PCP saw this one and sent me to ER. Finally I saw the neuro a week later. Didn't like the neuro so checked around and made appt with another highly recommended. Right after my first visit with her, I had an attack of Trigiminal Neurgalia. The nerve that runs from the brain down the side of the face started going crazy. Shooting pains (INTENSE) nonstop. These went on for a couple weeks. She put me on medication that started to help. Although today they have been wanting to start up. Also, I did not have bands present in my spinal but they do not show up unless you are in active flare.

    She said it all added up and she was surprised I wasn't diagnosed years ago. Fatigue is a biggie. Even Dr Jemsek agreed with the lesions when I showed him the MRI films the last time I saw him. Now I have been on shots (copaxone) one a day for about 6 wks. And I need to be taking one now.

    I do believe MS is genetic and who knows maybe lyme or babesia could trigger it. Something does. I do know I had an Aunt die from MS complications and her daughter has MS. On the other side of the family a couple cousins have MS. So it does run in the family and I have been told where I live is a hot spot for MS. No one knows why.

    My Neuro says she is not worried about me taking steriods, but I am not so sure. Will have to make that decision if and when?

    You might want to have another MRI with contrast and see a good Neuro.

    Love your name especially since my husband and I run a water garden business. My favorite lotus is sunny sky (red) and it blooms its head off. I bet the one I have has bloomed at least 15 times. Beautiful. (Though it is in a large pot.) And welcome to the boards.

    Probably 10 or more years ago I started having problems with my feet and ankles swelling. like balloons. Then I would break out in a fine red rash on my lower legs. Now my legs are so discolored its hard to tell when I break out. Each of the little red dots leave discolored skin. But I did have another problem with swelling this summer and I know I did have the breaking out with it. Still don't know if this is Lyme, Babesia, or MS.

    When I first contracted lyme, I had the heart problems like you described. But I haven't had them since. My heart too has recently been checked and no problems were detected.

    I hope you find out your cause. I think you will find lyme can and does cause these type problems.

    Glad to hear of your NY trip. I know you enjoyed it. Even if part of it was in a wheelchair. You made good memories with the kids and years from now if they see Mom in a wheelchair, it will bring happy memories. Which is better than not going. You know even now when I go to WalMart, I use the scooter most of the time. We learn our limitations. I'd rather save my energy for something more important than grocery shopping.

    Hope you and the kids are doing well with treatment. Give us an update soon, okay?

    I am wondering if I need to go on something for babesia. I am having problems, alot probably MS but also this rash. This time it starts out as a small 1/8" lightly colored spot and them starts growing. It gets a little darker shade of pink. A couple of them have developed a lighter center. I have many over my body. I'm not sure.

    Dr Jemsek said last time I saw him, he thought I needed to treat Babesia again. May have to go on the artiminisin. But with the copaxone for MS, will have to approach cautiously. Can not ask Dr Jemsek, he recently sent a letter out that he is relocating and will let his patients know where and when.

    Glad to hear from each of you. Hope we hear from Mickie, Shanna, JoJo and the others.


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    Old 08-31-2007, 06:09 AM   #122
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    Re: Complications

    Hi Marsha! Nice to read you Sorry you are going through all of this crapola...good grief...

    I am feeling pretty darn well. Been on Valtrex for 6 months or so then asked the doc to put me on Valcyte. So have been on that for a couple of months. I can tell that my temporal artery isn't swelling up as much. Still have the aliens on my head. And haven't figured out how to get rid of those...darn intruders!

    I am taking zithromax for the c.p. bacteria. But the way I look at it weather I still have lyme bothering me or the C.P. bacteria they both can be killed off with the antibiotics I take...

    I read over and over where it is said... WE get better not cured. So I take my good days and live life. I take walks with my 4 legged kids. And also go to the animal shelter and take some of those kids out for a walk. Right now I am fostering a 3 legged chihuahua. Her name is Faith. She is just waiting for the right person to adopt her.

    Marsha my heart goes out to you. I know it can be sooooo flippin frustrating. don't give up. Do your own researching ...Holidays are coming up we want you strong and healthy enough to go sing again this year at church...

    I think and Pray for you!


    Old 08-31-2007, 07:32 AM   #123
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    Re: Complications

    Thanks JoJo

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