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Nov 20, 2019 · Lyme Disease in Autoimmune Diseases

@tdemaria How did you ultimately get treated for Lyme? I'm a year in from the unexplained rash that I didn't see MD for since it didn't have bullseye. 9 months later a huge stack of tests/appointment papers/bill & I have had a total of 4 Lyme tests. One was a Lyme antibody test, 3 were Western blots but the first one just said negative and didn't list or say anything about the bands. The last two were Western blots that listed bands – Quest (reactive band 18 & 39), Stonybrook (postive for 5 bands including non CDC lyme specific bands & 41 was indeterminate. I'm at my wits end because with all these results still not cdc positive or positive "enough" even though many of bands are IgM active/current exposure. It's all so insane.

Nov 20, 2019 · Undiagnosed, numbness, tingling, Muscle weakness and more in Brain & Nervous System

@timsdeece I'm sorry for your situation and can related just to the frustration of not knowing what is wrong and having a thick costly pile of bills and results to still not be 100 percent certain. I can tell you that from my own experience that Lyme tests are very inaccurate and I've come to the conclusion that tests are just a tool but the symptoms are more telling then the test – usually. I had 4 tests, 2 were same type of specific Lyme test that gave me very different results. So, you could further pursue Lyme by finding a Functional Lyme literate MD but that is a project in itself due to it being pay out of pocket usually. Has anyone mentioned possible CPT disease that affects muscle pain made worse by exercise? Here is a link: https://ghr.nlm.nih.gov/condition/carnitine-palmitoyltransferase-ii-deficiency
Seems like your nerves are affected based on clothing sensitivity and nerve stuff seems so hard to figure out. I wish you better days of health ahead.

Nov 20, 2019 · Undiagnosed Autoimmune with back pain, spasms, and stiffness in Autoimmune Diseases

@julz I wonder how this Canadian MD treated her? I heard it goes undiagnosed and gets ignored as often in Canada as the US.

Nov 20, 2019 · Undiagnosed Autoimmune with back pain, spasms, and stiffness in Autoimmune Diseases

@kjo1 May I ask how they determined your thyroiditis? It looks like I'm dealing with Lyme bands (but not cdc positive due to being short for the IgG band but have more than enough IgM (recent/current exposure). I have many symptoms (muscle/joint pain, hair loss, weight loss, thyroid nodules, occasional tingling near fingernail/tip, pulsation like twitches random areas of the body, poor sleep…the list is long) that can be listed under both Lyme/co-infections but still question my thyroid as Lyme and thyroid problems seem to overlap or be common. But – since my TSH was in normal range they dismiss any further testing like T3 & T4 so I was curious how you were diagnosed.

Oct 17, 2019 · Troubling illness for 3 months. in Blood Cancers & Disorders

@mattkl817 What type of Lyme testing did you have done ELISA, antibody, Western blot and with which labs? I ask because I had two negative Lyme tests the first go around and then after retesting same lab but different test (Western blot) it showed I had "reactive" bands which are supposed to be Lyme specific. So I am retesting with Igenex, Stonybrook and MDL for co-infections. Also, look into Mycoplasmas as well. It's easy for things to get missed if the regular labs look okay. You have to unfortunately be the researcher and self advocate. My strange symptoms brought on anxiety and it created a cycle and then I didn't know if it was the anxiety or the symptoms. Hang in there and hope you get well.

Oct 17, 2019 · Undiagnosed Autoimmune with back pain, spasms, and stiffness in Autoimmune Diseases

Hi @becsbuddy Thank you for your info. Sounds like your experience was incredibly scary. I have regained some weight back and don't have any weakness or gait issues so I fortunately do not think it's MS so at this point I'm going for more specific Lyme testing before getting any brain scans. I also don't want contrast scan because of the chemicals. I have MTHFR & some other genetic stuff that doesn't do well with chemicals so I don't want to add insult to injury. I did have a spinal x ray due to the musculoskeletal pains but that did not show any spinal lesions. From what I've read and heard Mayo isn't great with Lyme. So at this point I don't think it's warranted but appreciate your info. I hope your treatment has improved your quality of life. Kindly, Amy

Oct 16, 2019 · Unexplained Severe weakness, losing hope in Brain & Nervous System

@lydiamay1 I'm so sorry you are so young and caring for a child through such worry must be difficult, so my heart is with you. I haven't experienced hand/arm weakness but my muscular and joint pains and other strange symptoms have brought me into digging a lot and MS did come up for me so I would get extra opinions just to be certain. Note that MS and Lyme can look the same in both some of the symptoms and lesions from what I've read. Get an Igenex Lyme Western blot or panel; they are pricey out of pocket but typical Lyme tests are very iffy whether sensitive enough to show true results. I know it's controversial but some believe MS is Lyme undiagnosed and even ALS can be caused from a Lyme tick borne pathogen. Either way, worth considering. The other thing to look into is Charcot Marie Tooth Disease, as I guess it can have MS like symptoms and demyelinating of the brain. Be your own advocate, genetic testing if nobody is giving you answers. I hope you get some answers and a treatment plan right away.

Oct 16, 2019 · Chronically ill without diagnosis and don’t know what to do next in Just Want to Talk

@hodagwi I too found out I have MTHFR but only via 23&me doing my own raw data searching. I am heterozygous so not the worst one to have and didn't experience any miscarriages but I do wonder if it affects me someway/somehow. I don't eat much for processed food, avoid gluten but I should probably read labels more closely to be certain.