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Lyme Disease Message Board

Lyme Disease Board Index

Dear Kali M,

Wow! Welcome to the board. :wave:

When I first joined I wrote such a long thread that we had to delete the last paragraph because it was longer than the board allowed. I agree with ncgirl about telling all you can think of at the time. I'm sure you have thought of other things since you wrote like I did but you were able to get the basics across. For me it was a real eye opener for what I had been through because I had never put it all down on paper. Now I have it to go back to and hand to any doctor that needs it. Although I will say that most doctors don't want to see it. So sad.

I can say that I am one of the few on here that doesn't have major brain fog which has made me wonder at times if it is lyme but this disease affects people in different ways. I have a major mobility problem with my legs but have come to the conclusion that a lot of it stems from the equilibrium problem and the number of times I have fallen. I too was using my arms to help me get up but now they are weak too. Getting up from the floor is the hardest. But sometimes when I am squatting down I end up sitting without meaning to.

I can relate to the cold legs and feet. In fact sometimes they were so cold that I couldn't tell if they were freezing or burning. I had always had cold feet too but this was much worse. This problem went away a few months ago when I started taking cat's claw and colloidal silver. I had been on Rocephin IV for 9 weeks until my liver enzymes went crazy and then on Doxy for 2 months. The IV was starting to help but the doxy did nothing. I think every case is so different that you have to just go by trial and error. After a while you can tell if something is right for you or not. I may someday be back on antibiotics but for now will try the natural stuff.

What do you mean by stretching your muscles? At night if I stretch too much in bed my calf muscles bother me but I was told that I wasn't getting enough calcium and upping it helped. One problem I have though is that I feel the muscles have shrunk or something because all day long when I get up from sitting I have to stretch my legs, arms, and back before I can walk at all. And even then it is kind of a goofy walk. I feel like a dog, they always stretch when they get up too.

When I started out it was all left sided and after being doused with massive doses of IV steroids (1,000 mg/day) because the neuro was convinced it was MS it went everywhere and now the right side of my body is the weakest. This is some strange disease! Give it a foot and it will take a mile. You mentioned that you use something with steroids in it and I don't know if it pertains to the info I found but supposedly lyme patients should not use steroids even in the smallest doses. This may be why after 4 1/2 years I am still having such a hard time. I will beat this though I am convinced of that. :D

Ticker will come on and advise you on what to do. I am sure the military will not be helpful as far as letting you get the real help you need. They are probably not well versed in lyme disease. Heck the CDC isn't. If at all possible you will need to send your bloodwork to Igenex in California. They use a better antigen for their testing and get better results. This may come out of your pocket but then after that maybe the military will pay for your treatment with a positive diagnosis. My son is in the Air Force and sometimes says he feels as though the military docs are just "practicing on him". Thank goodness he doesn't get sick often.

Keep us posted on your journey and if you want to read past posts just key on an individual's name and it will direct you. This may be a good idea because most people posted their "history" with their first post. You would go crazy trying to read all the posts from everybody but maybe the first ones from people would help you in your search for what ails you if only by comparing your symptoms to what others have gone through. Don't forget that YOU are your own best advocate. Don't let anybody (doctors) talk you into or out of a diagnosis. Go with your gut feeling. Keep us posted. You will get lots of info, compassion, and advice here. We are a true family.


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