i tested positive for Epstein-Barr Virus (EBV) w/ high titers: (1.91, EBV-EA; 4.07, IgG-AB), equivocal Lyme C6 (1.04), equivocal HHV6 IgG (1:320 & 10), and now i have Chronic Fatigue Syndrome (CFS). doctors don’t believe its Lyme altho i have many symptoms. I’m thinking Chronic Lyme or Post Lyme. One Dr (Phd) told me i had a lot of fungus in my blood and the underlying issue was Lyme (viewed blood under powerful microscope). Some Drs don’t beleive in CFS, and they get upset with me when i talk about Lyme.
Muscle Biopsy shows Mitochondrial Myopathy and i’m waiting to see Neuromuscular Dr (23Jul) for add’l testing and review. i’m having a sleep study on 10Jun. The following tests came back normal since my last post: PET Scan, Chest X-Ray, Full Body CT Scan w/ Heart analysis. Some Drs don’t beleive in CFS, and they get upset with me when i talk about Lyme.
Chronic/Post Lyme makes sense because of my background. i grew up in NJ & PA… i played and rode my bike in the woods all the time - it was my home away from home. i’ve been racing bikes in the mountains since 1994 (PA, VT, WV, Canada (Quebec, Montreal & Vancouver), Mexico, Europe (France, Slovenia, Switzerland). i got sick as a dog in VT in 97, and also WV after returning from Europe in 01. Drs are not taking me serious… they are only relying on Western Blot Test. i insisted on another one… and i’m seeing a Hematologist 11Jun.
i went to a CFS clinic and they put me on Heparin, T3 Thyroid, and Testosterone cream. i had low Natural killer cell titer (NKC WBC Lymphs, 686; NKC Phenotyping, 64). I’m also taking supps Beta Glucan and Immunoglobulin. i removed Soy and Whest from my diet in April - Nothing changed.
Drs keep pushing antidpressants (altho i’m not depressed and i saw a shrink to confirm)… what is that all about? they think they AD’s will help me sleep (which was the exact opposite of what happened when i tried one 37.5mg tablet of Effexor in Jan. i barely slept 4 hrs per night for an entire week! i’ve been ill for 14 months. does anyone have any ideas or suggestions?