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I've read a lot here and I just wish that I had stayed with what I believed.

I had a round red ring on the inside of my arm, near my armpit, back in 98/99. I showed it to my brother in law, a physician, when we were at a family party. He said it looked like Lyme but since there were no deer ticks in MI, it couldn't be. I found out later that this isn't true (we have deer ticks).

3-4 years later, I started getting all of the fibromyalgia/CFS symptoms (and all of them severe, such as full-body pain, fatigue, migraines, brain fog, etc.). After not getting help here, I went to Mayo for diagnosis and asked to be tested for Lyme (remembering the scar). It was negative, but they only ran one of the first tests, not the Western blot or something more in-depth. So they diagnosed me with fibromyalgia/CFS and every new symptom I have goes into that.

A year later, I got Raynaud's. Other tests showed an excess of arthritis and deterioration in my knees, back and neck. My vision went from almost perfect to very bad in three years. I had a seizure a couple of years ago. I've lost almost 100 lbs for no reason (I was overweight, now I'm not). And now I have a couple of different types of neuropathy (small fiber, large fiber) and muscle atrophy. I am scared to death.

I am currently on disability which may not last long because fibromyalgia isn't "real" and the neuropathy is not debilitating enough "yet" even though it's moving fast (all I had last fall was cold feet). My body twitches, my hands shake, typing this is taking a long time. I'm numb to my knees, everything burns and I have sharp, jabbing pains. Talking is getting harder and the muscles used to cough, laugh, etc. are weaker.

Last fall, when the neuropathy was first diagnosed, I asked the neurologist to run a Western blot. He said it wasn't necessary - it should only be run to check the first test. So he ran the same kind of test as Mayo and it showed that I didn't have Lyme. Again.

I also have depression, anxiety and have lost 30 points of verbal skills. I feel like someone has put a block in my brain and I can't access the information on the other side.

Again, I'm back to the Lyme question. Does it sound like I have it? Bite, four years later fibro, year later Raynaud's, seizure, vision problems, arthritis, 2+years later neuropathy, 3 years later muscle atrophy.

Where to start? I need an accurate test, but who will run it? I am not rich, but is there anyone good in Michigan (or NC? I have friends in Raleigh and I can stay there) who can run the right test(s) and treat me? I'm tempted to travel to one of the good docs that have been mentioned here, but again, I am not rich. I might have to though, because this is my life we are talking about and I've already lost so much. I lost several years with my new family and a wonderful job where I was at the top of my game.

Also, with treatment, will all of this go away? I'm very confused by the information here. It sounds like there are different treatments that are necessary, that insurance doesn't cover in most cases and if you don't get the right doc, you will not be helped at all.

I hope this wasn't too much writing at once. I just have so many questions and need help fast, before the muscle atrophy gets worse and I can't get around by myself anymore.
[QUOTE=erleichda1;2899772]Sarah and Jojo - thank you so much for the information. I've been reading a lot the last few days and I'm scared to death. It almost sounds like it's not worth it but what choice do I have? I was contacted about a doctor very nearby who works with Lyme but I don't know how good or knowledgeable he is. I'm most worried about two things - the neuropathy that is quickly spreading and causing atrophy, and the disability payment that I am fighting to keep. Fibromyalgia/CFS, neuropathy and the other many things I have aren't enough to continue, apparently. When I first went on it, I just had all of the severe fibro conditions. The problem is I have several specialists, not just one doc who can oversee everything and tell them that I cannot work right now. Do your Lyme docs do this for you, or do you work?[/QUOTE]

I know that it is really scary, I'm sorry that anybody has to go through this. Some of the info I gave you got removed by the moderator, oops, sorry. The internet is alot of help with understanding the controversy of LD. I won't go any further on that, I'm sorry you have to find it out on your own. I really wanted to help! I was diagnosed with fibro 9 years ago, because the doc's couldn't figure out what was wrong with me, I look at fibro as a trash can diag. that is given to people when their doc's can't find the right diag. My LLMD also said the same thing, when I first saw him. My reum. told me for 8 years that eventually I would come up positive for Lupus, but I never did. He did however do one kinda thing good for me, he put me on plaquenil for a year, it's used to treat, not cure Lupus, and as it turns out is also used with LD. It put me in a remission for almost 3 years. Didn't feel fantastic, but was able to work. As for working I wasn't at the time the doc put me on plaq. because the fatigue and muscle aches were so bad. I applied for disability, but was denied, I didn't have the backing of my reum. though, he didn't believe that people should receive dis. When I first applied he didn't send my records in time, and then when I appealed he sent them untranscribed. He was a jerk! 2 years later I bought into a graphics business with 2 police officers, that needed side jobs, and owned it with them for 3 years. We didn't have to pay SS, so now I don't have enough credits to apply. I had to sell my half of the bus. when I relapsed. I haven't worked in 3 years. But I have 4 kids, so I feel like I have a full-time job anyway, LOL Are you having neur. problems with your left side, shoulder, arm, hand? My LLMD told me to go see a Neur. because I have such bad pain in my left arm, it goes numb and my hand freezes, I can't lift anything, or fold clothes, the pain moves around all over the entire arm, as I have been reading I have noticed so many people on this board have mentioned problems with their left side. I am worried that the neur. here isn't going to know what to do. The first neur. I contacted refused to see me. I live in S. Texas, where LD supposedly doesn't exist. I am glad that you have found an LLMD in your area, one way to know if they are good is if they immediately test you for Lyme through Igenex. Ask him or her which labs they use. Igenex is the only one I would accept for first testing. They will also use *****, and *******, for basic bloodwork, Liver panels, thyroid, and the co-infections, luckily ***** and ******* are billed, so no upfront fees for that labwork. I'm sorry if I scared you with the fees, when I started this journey six months ago, I had no idea I would be paying for so many things upfront. I wanted you to know so you could be prepared. Not because I was trying to discourage you in anyway. You need to have these tests done, Credit Cards can be payed on monthly, thank goodness, that's why I said get some CC's, so that you wouldn't have to pay cash for these doc's and tests all at once. I know it is overwhelming. But when you do get the diag. it is a relief to finally know that yes, I am not crazy, I do have a ligitimate reason for feeling like crap. And now you can move on from there. My son is getting better, he jumped on the trampoline last weekend for almost an hour, this is a major improvement, before he would go outside for 10 min. and be completely exhausted, he has also stopped chewing his hands and cracking his neck every 10 min. so I really feel that his ABX's are helping, his LLMD tolm me 2 years before he would be better, and I am already seeing more improvement then they thought, he's had LD for 6 years. So hang in there, keep in touch with the people on this board they will help you alot! Have you checked to see if this LLMD is in your network. I have found one in Louis. and one in Houston that accept ins. so there has to be more out there. Please don't feel that the LLMD's are to blame. My son's LLMD is the most caring, wonderful man I have ever met, and he has gone to the ends of the earth to keep practicing and treat the 10,000 children he sees that have LD. These doc's care sincerely about LD patients, if they didn't they wouldn't be treating it. The more you learn the more you will understand what I am talking about. Take care of yourself and we are here if you need us, Sicerely Sarah





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