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Undiagnosed Autoimmune with back pain, spasms, and stiffnessAutoimmune Diseases | Last Active: Nov 14, 2021 | Replies (91)
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Replies to "I’m not giving up I just feel stuck I guess. And I’m not completely certain it..."
@amberlynne5 I'm really sorry about your health situation and am dealing with a somewhat similar experience. I do not get muscle spasms in the back but since I came back from living out of the country this May, I've had many symptoms increase and have gone to a ton of appointments, spent well over $4000 out of pocket on trying to get some answers, having labs drawn getting multiple opinions (regular PCP, Naturopath, Osteopath, Dental 3D Scan, Rheumatologist, Neurologist, etc. and finally I feel like it's looking like Lyme related. Some of my symptoms have changed or evolved and some come n go but not for long for the most part such as joint and muscular pain or the pulsating like twitch feelings all over, even on occasion facial areas, tingling on my scalp, tightness on my scalp, tender glands. I also had major hair loss and weight loss 17 lbs, weighing less than 100 after symptoms increased but I think some of that may have been from anxiety as I felt like I might have a progressive disease- thanks to Google search. But – same as you, the testing is questionable, even the Neurologist mentioned Lyme to me as his first question/comment. My first two hospital run tests (in May) said negative; one was a Lyme antibody and another was a Western blot. I switched to a new NP after being frustrated and feeling like I was getting nowhere. The new NP re-ran a Western Blot via Quest lab and it showed "reactive" to some Lyme bands but negative co-infections. I am due to get another test either with Igenex or Stonybrook and the Co-infections through MDL, as I guess some testing companies are better for Lyme but not it's common co-infections. The only other lab that was flagged as abnormal was a CD57 test, my number was 24 and they want you to be at a mimimum of 60 to 100 or so. It's usually an indicator of Lyme or that your body is trying to fight off something but can't. I've been told that I look well (because I'm not wheelchair bound I suppose and not overweight) and that my illness or myalgia of some sort would go away "in time". If it's Lyme or MS or any of those things they don't just go away, so I hear your frustration. I have had one 3 week low dose Doxy trial, tolerated it fine but didn't notice any major improvements. I'm supposed to get more Doxy while the new soon to be test(s) are processed for results; hopefully that'll be next week. Don't give up, and push for answers. You may have to work with a Functional MD or a Lyme Literate Doctor. I can't get in until February to see a Lyme MD. Look into Igenex or Stonybrook Western blot or Immunoblot just to see if anything shows up for you. MS and Lyme can look very similar on tests – even in brain scans. With MS though, usually gait issues, bladder issues, vision issues pop up; I fortunately have not had any of those symptoms. Hang in there, send me a message if you want. I wish you well healing & answers. – Amy