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thester6474
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Some were confirmed by MRI; like the Early Mild Disk Desiccation, Mild Spinal Stenosis, Mild Early Disk Degenerative Disease, kyphosis and scoliosis. Others by labs. And then the others are fibromyalgia. |
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Clayton72
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I haven't really ever gone to doctors before now so there's no telling if I have anything else. I avoided doctors because they never seemed to help me with what was wrong anyway. Thank god the doctor I went to for testing had Lyme disease (well, that's not what I mean but the fact that she had it was the only reason I got tested). Wow... you have some major stuff to deal with don't you? I can only imagine how many meds you must have to take. |
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jaime1978
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when my symptoms all started, i was told I had disc dengeration in my c-spine (neck), then another doctor told me it was so mild it wasn't enough to be causing my pain, depression of course, Lupus, Rheumatoid arthritis, scleroderma , and the ever common fibromyalgia. many, many , many, common dx turn out to be lyme. Not to get in the "lyme tunnel" as there very well can be other things going on, but it certainly is undertreated and underdiagnosed. anyone with a dx of fibro needs to look into it further. Why is it that with all my tests (at least the fibro, MCTD- lupus, RA, and scleroderma) never had any real positive tests, but they could dx me with that, but when it comes to lyme it was so hard? and when I was tested via igneix, I wasn't cdc positive, but most certainly positive according to the bands that were positive. One thing I just read is that many, most, lymies, can not tollerate meds for depression...which I found interesting because I had horrible reactions for any of the ones I took. Was just another piece of the puzzle being ignored, or just the plain ignorance, and mis information out there.... Please do not take anything I say as medical advice. I am not a doctor.
~lyme disease support group leader~
please pm me with any special concerns |
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Clayton72
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I forgot to mention to you guys that I was asked to be in a documentary about Lyme Disease symptoms, etc. It's being used on a satellite to educate nurses, etc. in our hospitals. I have turned down doing documentaries about my own company b/c I'm so camera shy - I'm going to bite the bullet and speak up for Lymies. Ugh. Funny, I can do public speaking gigs in front of hundreds of people (and prisoners) but video cameras FREAK me out.  |
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thester6474
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I have gotten up to 18 different medicines. At one time they had me on two different anti-depressants, Cymbalta 60 mg. and Pamelor 50 mg. They just upped my dosage of Pamelor to 75 mg. I have been on Lyrica, Lamictal, Requip, and the list goes on. I felt just as bad, if not worse, on all of these meds. Like Clayton, I never cared for doctors nor meds, and their God-like personalities. I started seeing my current doc two years ago this April, after catching a bad case of the flu. I could barely walk, hold my head up or anything for over a week. I had gone to see this other doctor two days before him and she swore she didn't know what I was suffering from. She did test after test, and at the time I had NO insurance, so I was charged almost $200 cash and diagnosed 3 days worth of medicine. She also ordered a follow-up appointment on day 3. Needless to say I did not go back and see her, I started seeing my current doc and have been satisfied every since. I wonder now if that is when the intial Lyme Disease started, I had never really bounced back from it. I can probably say that I am one of the lymies that cannot cope with anti-depressants, but my 1st Neuro refuses to take me off of them, only increases them. |
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Clayton72
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Ugh. That drives me NUTS. I don't know why docs give those out like candy. Don't they realize that people are depressed because something is WRONG? Physically, emotionally - either one. You can't just hide that stuff - it'll pop up somewhere else. Get to the source, doctors! I refuse to take antidepressants but that's a personal choice - I do know that many people need them and live better lives with them. I can't wait for you to get a Lyme Literate Doc or a doctor that doesn't treat you like a guinea pig or pin cushion! You can get off those antidepressants on you own if you don't feel good on them - you have to do it correctly but they can't make you stay on them! |
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MissMartha
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Clayton is right. They cannot force you to stay on any medication. If you tell them that you are not going to continue taking them and you want to know if you can quit "cold turkey" or if they recommend some method of tappering off, you should be able to get an answer. They may want to be very clear that it is not their recommended treatment for you. Many of the diagnoses you have are things that can be caused by Lyme. I do not think I have ever met a Lymie who does not have fibromyalgia. Just before I got dianosed with Lyme I had low blood calcium. This means that my body was taking calcium out of my bones as fast as it could and that was not enough to keep up with demand. As I understand it, this is not too uncommon with Lyme. The problems some of you report with your spines may be related to this removal of calcium from bones. It is amazing the array of problems Lyme causes in various people. I for one, love Lyrica. The first week I was on it was aweful. I was dizzy all the time. I called my doctor to tell her how much I hated it, and she convinced me to try double the dose. The dizziness went away and my pain and neurological symptoms improved. I have talked to many people who cannot tolerate Lyrica. I do not know if it is because they were unable to stick out the initial side effects until they adjusted to it, or because their bodies were never going to adjust to it. I am currently down to about 6 prescriptions. I would prefer to live a happy comfortable life without any medications, but that is not my current reality. Maybe I will get there someday. Martha |
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accalea
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You definately need to start taking probiotics. Most doctors recommend that you take atleast 2 billion a day, but as far as I know you reall can't take too many. Unless you are like downing the whole bottle at once. Check to see which brands are available and what the amount is per capsule. I take about 8 billion a day when I am on heavy antibiotics. Make sure that you take them atleast an hour before or after you take your abx, or it will defeat the purpose. My advice about the meds it to just be very honest with your psych and if it isn't working for you...FIND A NEW ONE!!! It can be a lot of hassle, but in the long run the benefit will outway the struggle. |
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thester6474
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I asked my Neuro back in August how I could taper off of the Nortriptyline, he refused to tell me. They were originally prescribed to prevent the headaches I was having. At first it did, but they got to the point I was waking up with headaches and going to sleep with headaches. I weened off of them as directed by my PCP on a trial basis, we wanted to see if they were helping at all, oh they were. The headaches were 100 times worse without them. I need something that can help with the headaches so I am able to stop taking them. Any suggestions? |
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"I joined this site when i hit my ultimate low. Joining has helped me connect with others who understand me and how i feel and has helped me keep some sanity in my life.
