Story about Chronic Fatigue Syndrome / M.E. , Fibromyalgia, Ehlers Danlos, Mastocytosis and MCAS, Small Intestine Bacterial Overgrowth (SIBO), Lyme Disease, Migraine, Common Variable Immunodeficiency, Depression, Anxiety, Scoliosis, Obsessive Compulsive Disorder (OCD), Uterine Fibroids, Babesiosis, Raynaud's disease, Polycystic Liver Disease, Central Pain Syndrome.

From CVID, PANS and EDS/MCAS to ME/CFS/Fibro/Lyme

Aug 2, 2016

By: ck1

Fibromyalgia Ehlers Danlos Mastocytosis and MCAS Small Intestine Bacterial Overgrowth (SIBO) Lyme Disease Migraine Common Variable Immunodeficiency Depression Anxiety Scoliosis Obsessive Compulsive Disorder (OCD) Uterine Fibroids Babesiosis Raynaud's disease Polycystic Liver Disease Central Pain Syndrome

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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.