Posted 6/29/2020 12:22 AM (GMT -6)
Hey! You all were super helpful the last time I reached out so I'm hoping for some more advice now that I've had a week or two to process, research, and ask the dr's some questions.I have had neuro symptoms (ataxia, syncope, peripheral tremors) since approx July 2019. In October I had my last blackout delivering groceries to customer and faceplanted on their concrete driveway on top of their groceries. I injured both my knees, R ankle, right toes, both hands. I didn't go to the ER or the dr. I stupidly went home and nursed myself back to health myself. I mentioned it in passing to my primary at my physical and some tests were run nothing came back other than a right bundle branch block. Everything healed. A few weeks later my big toe started going numb and hurt really badly in the joint, it was swollen and red. Xrays were ordered everything looked fine. A week or two later my big toe went from hurting really badly to feeling numb, tingly, and like it was constantly asleep. When I would walk it would feel like there was a hole in my shoe where my big toe should be. I started losing my balance frequently, dropping everything I touch and things I don't intend to touch, my tremors worsened espescially when I was tired. Fast forward I have peripheral neuropathy and autonomic neuropathy now. I have an AFO casted and ordered to be picked up in a couple weeks. I use a walker or wheelchair on my bad days and a cane on my good days. My immediate or short term memory is trash. Conversations are difficult because I forget what I was saying or what the person talking to me just said before I can think of an answer. I say the wrong words frequently, sometimes I notice it right away sometimes I don't but others do. My neurologist after 8 doctors and a year of diagnostics ordered a Lyme screening test ELI, it came back positive. So he ordered an Lyme Disease IGM/IGG Immunoblot, it came back positive for IGM bands 23 and 41, and negative with no bands of IGG. My neuro diagnosed me with lyme and referred me to Infectious Disease for further evaluation and treatment. If you read my last post you know my ID dr appt was a disaster and ended with her denying my diagnosis entirely, and wanting to start a whole new diagnostic workup starting with a lumbar puncture and labs, and absolutely refused to give me any antibiotics not IV or oral. My mom and I stormed out (well my mom rolled me out in my wheelchair in a hissy) and we left crying. A week or so later after a ton of phone calls speaking to every "lyme clinic" I could find I realized treatment wasn't an option. Even with the amazing health insurance I have none of those clinics take insurance and I barely have copay money let alone 50 grand set aside for treatment with one of these doctors. So I did some more research and found a dr, I thought based on google searches was experienced in lyme disease however she is a rhuematologist. She refused to treat for lyme but agreed to help me determine if it is possible that I could just not be able to make the IGG antibodies. The arguement the ID DR had was that I could not have neuroborrealis or chronic lyme because I only had IGM antibodies meaning recent first infection. After talking to you all I was told that's pretty typical for a lyme patient because their immune system is weakened. So I went to the rhuematologist with this angle. She ran 19 more labs on blood and urine. Everything has come back normal except I tested positive again for IGM anticardiolipins not IGG. Oddly enough on my Immunoglobulin quantatitive I had like 900 IGG? So it seems to me that I can make IGG, I have a normal range, why would I not make the IGG if I have chronic lyme? Maybe this is denial but I need to understand this battle and if I'm fighting the right one before I dig deep. So in addition to this lab being positive there is another lab that the results are being held for some reason (I believe it's positive and dr wants to discuss at appt) it is also related to this Antiphospholipid Syndrome, It's called a Lyme Anticoagulant Panel, and HLA-B27 I believe is positive as well the results are also being held. All 3 of these tests are related to a problem with blood clotting that isn't fully understood combined with antibodies being created to attack your own cells so autoimmune. A common result is multiple early pregnancy losses, stillbirth, or late term loss. I have been pregnant 8 times, I have 2 living premies, 1 stillborn daughter, 1 late term loss daughter, and 4 early miscarriages before 8 weeks.
I know this is dragging on but I'm looking for more questions to ask, more things to consider or ask my dr about. SO you guys need background. So far I have had a positive VGKC antibody test, Positive Metanepherine blood test but negative 24 hr urine metanepherine test. Consistently low copper for almost a year, low magnesium, low sodium, high white blood count with the appearance of viral (I think this means more neutraphils), Urine test shows blood, leukocytes, and protein in urine but no infection with culture and kidneys test normal. I run a low grade fever 99.5-100.5 for weeks at a time, frequently in the evenings. They recently found bulging discs and spondylosis in my neck and lower back, spinal cord flattening and nerve protrusion in neck, received cervicle epidural with steroids. Oh and Syphilis test was negative (band 23 spirochetes?)
Can anyone who has a clue what I'm talking about make any sense of any of this to me? Like what direction should I be looking, what questions should I be asking now? I mean it seems like my body is making IGG so it now seems possible to me that it may not be lyme and maybe it is a false positive but then if so why the 23 and 41 bands? So many questions I have. Also I've been told of a slew of herbs, and even bee sting therapy, teas, massages, all kinds of things that I should do. Here's my question. If I do have lyme and I can't get a dr to give me antibiotics and I can't come up with the money to pay a llmd to do it, Is it possible for me to kill these stupid spirochetes with something over the counter? Available in a non pot friendly state?
CFS age 15 (diagnosed by childrens hospital 1 year after mono diagnosis and positive epstein barr by pediatrician)
Allergies: Pennicillin (Anaphylaxis), Sulfa drugs (Severe hives) Cephlasporins (Steven Johnson Syndrome age 8) Latex (Anaphylaxis)
Any Ideas/Advice Welcome!
Also in closing this I just remember a really nice woman on here that offered to email with similar symptoms. I have forgotten you. Please do not be offended I forget almost everything anymore. I will go back and find your email now and follow up with you, thank you and please forgive my neverending brain fog!