Posted 12/7/2019 7:38 PM (GMT -5)
Hi all - I've been sick for 6 months now and I'm trying to figure out what's wrong with me. I’m doing a brain MRI on Monday to rule MS in or out, but I’ve been suspicious of Lyme for a while.
Symptoms include:
- Muscle twitches
- Body "vibrations" and fluttering, especially at night
- Numbness in face and arms (went to ER, cleared of stroke)
- Occasional insomnia and bizarre dreams
- Visual snow, blurry vision at times
- Pins and needles
- Anxiety and depression, sudden moments of extreme sadness
- Hives and itchiness, swollen tongue, sudden food allergies
- Dry mouth
- Brain fog
- Low body temperature and heart rate
- Severe joint pain in lower back, right on tailbone
- Heartburn and acid reflux
- SIBO dx in July which caused constipation and bloating (these symptoms have resolved)
- Small white spots on skin
- Clothes leave very prominent imprints on skin
- Random red marks and cuts where I haven’t scratched myself
- Absence of menstrual cycle for 6 months
- Severe hair loss (especially troubling because I am a 28 yr old woman)
I'm sure there are other things I'm forgetting too - I seem to have two or three symptoms for a week, then they dissipate and are replaced by another set of symptoms. This has been ongoing since June.
I have been to my PCP, GI doc, allergist, holistic chiro, LLMD naturopath, physical therapist, dermatologist, gynecologist, and neurologist. I have done tons of blood work, upper endoscopy, colonoscopy, allergy skin prick tests, Pap smear, ultrasounds, X-rays. I have celiac disease so my allergist was suspicious of another autoimmune disease like lupus or sjrogens, but those tests came back negative (ANA). Hormone levels are in normal range (albeit on the lower end). No vitamin deficiencies. No STDs, normal Pap smear.
I did Igenex testing through my naturopath, which came back CDC negative - however I was positive on igM band 34. IND on igM bands 23, 31, and 41 and iGG bands 23 and 41. Like I said above, my neurologist is running tests for MS, but I’ve read that Lyme mimics MS, and I don’t want to be misdiagnosed. None of my doctors will treat me for Lyme based on these results. If I don’t end up with an MS diagnosis, how can I get someone to treat me for Lyme? A couple doctors have suggested infectious disease, but I’ve read those were a waste of time.
I live in LA but took a trip to NorCal in April, went hiking in Big Sur where there's known to be ticks. Also did some hiking where I'm from in PA over Memorial Day weekend. My mom had Lyme a couple years before I was born. Never had a bite or rash and I got sick pretty suddenly in mid-June. Feeling really lost at this point - my quality of life has plummeted. Currently taking time off work but was hoping to start again after the holidays.