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unexplained symptoms, chronic lyme, fibro or ms?
by iudsis, Jun 05, 2008 11:52PM
I don't expect a diagnosis, but perhaps some insight, that would be greatly appreciated.
It began with late nuerologic Lyme and the Epstein Barr Virus. I had the two simultaneously. And yes, the lyme was substantiated by both a western blot and ELISA.
Before I delve into my treatments and symptoms, allow me to share my lifestyle background. I try to maintain a very healthy diet. I am a vegetarian, I watch saturated fats and sugars. I use to bike 20 miles a day. Don't smoke, use to for a couple years @ 2-5 cigarettes a day and kicked that poor habit. have a drink rarely. Use to perform yoga daily. I have long had very dull tense back pain. I am 22 years old. I can no longer bike up any sort of hill, even a gradual incline. Yoga seems to onset attacks of inflammation.
The Lyme was only initially treated with 3 weeks of 250 2x daily doxycycline. It seems a little scant for late stage lyme. My life was never the same afterward. I experienced and continue to experience muscle pain, joint pain (all joints are involved, but primarily the knees, hips and my hands , nerve sensitivity, tingling sensations, red swollen eyes, electric "shock" sensations, numbness in my face that comes and goes, low grade fevers, sweating, a strange red blushing on my face that feels mildly irritated that comes and goes, fatigue, fatigue, fatigue, brain fog repeated hives and I really hate to admit this but I have had a few times where I had nightly incontinence, although not very often, like 3 times in a year, but this never happened before. In november (months after initial treatment for lyme) I got this dry mouth that hasn't gone away. I continued to seek out doctors, but no one knew what to tell me, no one would even refer me to a rheumatologist. I was just brushed off. I was tested for MS, inflammation, all negative, although these things may take time for blood work confirmation I have heard. I also went there on a better, less inflamed day. Anyway, since no one would do anything and since I had had late stage lyme that may or may not have been adequately treated, and since there are other people I know who had late lyme and still have problems, I broke down and saw one of those lymie doctors (if you are reading this and you are seeing one of these doctors please reconsider what you are doing, there is no "cure" only experimental medicine that could cause harm to you and the public, the next MRSA). I was on antibiotics for 4 months, could never tell if I was getting better or if it was psychological because I felt proactive about being in control of an uncontrollable situation versus moping about with terrible pain and not doing anything. Eventually I had to stop, I got an antibiotic resistant infection and had to take one of the q4 antibiotics. Its been a month since I have been off antibiotics now, cold turkey, I happily report a wonderful lack of yeast infections and better digestion. But at present I have shooting pain in my joints that no ungodly amount of Ibuprofen will manage, I feel slightly worse than before. The pain is mostly in my hands and knees, with spontaneous bruising and swelling of the knees to accompany the shooting pains, redness and swelling around all affected joints (hands and knees). Is this potentially an autoimmune reaction to having too much going on at once? The symptoms seem like they could be a number of things, but it all looks grim right now. Not much is known about lyme so I feel that the possibility does exist that I could have a low grade infection, so I worry about corticosteroids, not to mention previous adverse reactions from them when I had a major surgery. Sorry to bombard you with all this, but It's a month before I can see a doctor and my knees feel like someone is banging at them with a hammer.
It began with late nuerologic Lyme and the Epstein Barr Virus. I had the two simultaneously. And yes, the lyme was substantiated by both a western blot and ELISA.
Before I delve into my treatments and symptoms, allow me to share my lifestyle background. I try to maintain a very healthy diet. I am a vegetarian, I watch saturated fats and sugars. I use to bike 20 miles a day. Don't smoke, use to for a couple years @ 2-5 cigarettes a day and kicked that poor habit. have a drink rarely. Use to perform yoga daily. I have long had very dull tense back pain. I am 22 years old. I can no longer bike up any sort of hill, even a gradual incline. Yoga seems to onset attacks of inflammation.
The Lyme was only initially treated with 3 weeks of 250 2x daily doxycycline. It seems a little scant for late stage lyme. My life was never the same afterward. I experienced and continue to experience muscle pain, joint pain (all joints are involved, but primarily the knees, hips and my hands , nerve sensitivity, tingling sensations, red swollen eyes, electric "shock" sensations, numbness in my face that comes and goes, low grade fevers, sweating, a strange red blushing on my face that feels mildly irritated that comes and goes, fatigue, fatigue, fatigue, brain fog repeated hives and I really hate to admit this but I have had a few times where I had nightly incontinence, although not very often, like 3 times in a year, but this never happened before. In november (months after initial treatment for lyme) I got this dry mouth that hasn't gone away. I continued to seek out doctors, but no one knew what to tell me, no one would even refer me to a rheumatologist. I was just brushed off. I was tested for MS, inflammation, all negative, although these things may take time for blood work confirmation I have heard. I also went there on a better, less inflamed day. Anyway, since no one would do anything and since I had had late stage lyme that may or may not have been adequately treated, and since there are other people I know who had late lyme and still have problems, I broke down and saw one of those lymie doctors (if you are reading this and you are seeing one of these doctors please reconsider what you are doing, there is no "cure" only experimental medicine that could cause harm to you and the public, the next MRSA). I was on antibiotics for 4 months, could never tell if I was getting better or if it was psychological because I felt proactive about being in control of an uncontrollable situation versus moping about with terrible pain and not doing anything. Eventually I had to stop, I got an antibiotic resistant infection and had to take one of the q4 antibiotics. Its been a month since I have been off antibiotics now, cold turkey, I happily report a wonderful lack of yeast infections and better digestion. But at present I have shooting pain in my joints that no ungodly amount of Ibuprofen will manage, I feel slightly worse than before. The pain is mostly in my hands and knees, with spontaneous bruising and swelling of the knees to accompany the shooting pains, redness and swelling around all affected joints (hands and knees). Is this potentially an autoimmune reaction to having too much going on at once? The symptoms seem like they could be a number of things, but it all looks grim right now. Not much is known about lyme so I feel that the possibility does exist that I could have a low grade infection, so I worry about corticosteroids, not to mention previous adverse reactions from them when I had a major surgery. Sorry to bombard you with all this, but It's a month before I can see a doctor and my knees feel like someone is banging at them with a hammer.
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Did you get another lyme test to see what shows right now? Your symptoms do sound like severe lyme to me but it's hard to know for sure.
I would recommend getting tested for the co-infections that often go along with Lyme.
They are Babesia, Bartarella, Erlichiosis and sometimes Mycoplasma.
I am in the same boat as most people who were diagnased too late. I would definitely consider staying with treatments offered by LLMD's.
My symptoms are also setting me back physically. Not so much joint pain but more along the line of muscle aches, tightness, cramping, sometimes twitching. My hamstrings are the worst of the muscle groups.
Occasionally I get neuropathic type burning and stabbing pain in the mid-back and arms.
I am going to continue treatment with my Lyme doctor until I return to my old physical self. We can all beat this thing. Keep a positive frame of mind and don't let the bumps in the road set you back.
DG
You need to take diflucan with antibiotics for systemic candida infection. I think I took it daily for over a year.
Read the treatment guidelines for late lyme by ilads, at , I think is their website.Yes, probably no cure, but you need to get bacteria (and its neurotoxins) load down so you and it can coexist in a way that leaves you a better lifestyle.