Posted 3/2/2013 11:12 PM (GMT -7)
I had mono at age 18, stayed out of school & work for 2 wks, went back to a normal life of h.s., 38 hrs of work, & social life. Got to college, loved the freedom & social life. Could do well for a while & then would be down sick, worn out. At 21, dropped out of college, no money, very ill, very exhausted.
Went to stay with parents in their snow bird home for 6 wks. Instantly started feeling better, got a job, ran around, socialized more than I should have. Parents required me to return home with them when they came back. Soon, I was back in pain, fatigue, post exertional malaise, muscle pain, swollen glands, sore throat, chronic sinus infections.
Met & married my husband, moved to where he was at. Decided to complete BSW degree, before long, was experiencing fatigue, exhaustion, constant illness, pain, sinus infections, swollen glands, sore throat. Had to take a leave from school after diagnosed by a Dr as CEBV. All Drs before her, said could only have mono once. Told after that, could only treat symptoms. Dr. after that found fibromyalgia. We moved 3 times in 3 yrs due to floods, dry wells, property selling. Finally, moved back to husband's home area. I became pregnant with 1st child, pregnancy went well except I had constant horrible reflux & fatigue. Took Malox for reflux which later learned caused constant diarrhea. Baby was born normal. At age of 10 mos, he got chicken pox from child at babysitter, I got them at same time (age 31) as we broke out the same day. I got infection in glands, swollen throat, extreme fatigue. Fast forward 4 yrs to child #2, normal birth, nursed 40 min out of every 2 hrs, wore me out. Had returned to work following leave & tested positive for CEBV. Had to take time off. Unfortunately, I have had so many flares, my children at 18 & 22 don't ever remember me well.
I have seen family drs, nurse practitioners, chiropractors, massage therapists, rheumatologists, endocrinologists, GI's (oldest son has Celiac), orthopedic specialists, internists, I can't even name how many more. I have had approx. 10 major flares since I was 18, I am now 53. I can't work, even the specialist says I can't. I started seeing a specialist Feb. 2011 every 4-6 wks - an 11 hr r-t drive. Needless to say, I sleep most of the ride while my husband drives. I was first diagnosed by him as CEBV, HHV6, mycoplasma pneumonia, supraventricular tachycardia, hypothyroid (previously diagnosed). I have a previous diagnosis of fibromyalgia; however, this specialist doesn't believe in fibromyalgia.
I have not missed an appt. For 2 yrs, I have been taking 1G Valtrex 4x's/day. I was on Valcyte 900 mg until liver became toxic due to Mobic. Went off Mobic, when numbers were normal again, started back on Valcyte. Was treated for mycoplasma pneumonia & is it now clear. Am on digoxin & atenolol for SVT. I still have no life. I have post exertional malaise which causes me to be down for days if I do anything at all. I haven't worked for 2-1/2 yrs & specialist says I can't work to apply for SSDI but now won't fill our all of the paperwork, very frustrating.
I need to find someone in the Indiana, Cincinnati, Louisville area that is doing more than herbs. I think the antivirals might work but feel there is more that needs to be found. This Dr. is not good about listening, somewhat feels he is God. If you know of anyone in any of these areas who is working on CEBV &/or HHV6 with antivirals or is getting good responses, please let me know. Thanks so much!!