Chronic Fatigue Syndrome / M.E.
From CVID, PANS and EDS/MCAS to ME/CFS/Fibro/Lyme
I wish that more MDs thought more carefully about CVID, PANS/PANDAS and EDS/MCAS. If I had been diagnosed and treated earlier in life with Igs (instead of being called a hypochondriac and shuffled off to conventional psychiatry), I may not have ended up with severe neuroimmune disease at 45. I had symptoms of immune deficiency, MCAS, and a PANS-like onset of neuropsych symptoms by 13.
Despite the unmanaged immune problems, I was mostly a high functioning, athletic person, with periods of poor mental and physical health (probably due to pathogen reactivation). In 2012 I caught a virus and had major reactivation of all the herpes viruses, parvovirus, and flea and tick-borne pathogens I had picked up over my lifetime (but had mostly kept in check). I'm sure that I have active infections, some known, others unknown. Today, after 5 years of neuroimmune disease, I am mostly housebound, sometimes bedbound, and have autoimmunity (high CellTrend and Cunningham Panel) as well as low NKC function and low IgG 1 and 3. My muscle, joint, neuropathic, and migraine pain range from 4-10 daily. Severe pain and PEM are my main issues.
I'm a patient at OMI in Mountainview (highly recommend Dr. Kaufman). Currently, I'm on 2g IV Rocephin/day, 3.5 mg LDN/evening, 200 mg Celebrex, H1/H2 blockers, mast cell stabilizers, Xifaxan/herbal antibiotics, T3/T4, dexamethasone, progesterone, estrogen, and many many supplements including methylated b-12, SAM-e, glutathione, NAC, l-acetyl carnitine, resveratrol, coeq10, ALA, quercetin, mixed immune boosting mushrooms, others.
Find people with Chronic Fatigue Syndrome / M.E. through the map. Connect with them and share experiences. Join the Chronic Fatigue Syndrome / M.E. community.
Related books