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I’m sorry, I know this long…I am desperate to get answers to explain my misery. My quality of life gets worse with each year.
I am a 50 yr old Female with a history of MVP (now leaky with leaflet thickening Fibromyalgia, Cervical fusion (2000), migraine, chronic fatigue, Discoid Lupus (biopsy 2006),. 24 hr. saliva test showed very low cortisol in 2006. H.Pylori 2003 - treated 3x before eradication in 2009). Joint pain and severe fatigue set in after my youngest was born in 2002. In 2008 right before I got type A flu I had terrible tooth pain, then eye pain, stabbing face pain and some weakness in my left leg. Tested neg. for MS then and again March 2010 when headaches got worse (daily). Sed rate, ANA, and other tests for autoimmune disease always neg. and normal. Also Dxd with ADHD in 2008 after my son was dxd. I've tested pos. for EBV, herpes 1 & 2, parvo B19 and had chicken pox as a child.
I recently was diagnosed with dyautonomia - (my BP is normal standing, pulse 60s to 70s, sitting systolic is high pulse low 50's, sometimes high 40's) and then a sleep study showed mild apnea with no stage 4 sleep. I'm now trying to get used to cpap and taking Klonopin along with my many other meds.
Had to quit working for a while until last week. Found out 2 weeks prior that my sons and I had mycoplasma infection. Took Biaxin for 10 days now on Levequin for 10 days.
When I was in my early 20's I slipped in a bathroom in a bar and hit my head pretty hard on a porcelain sink. I woke up sitting on the john when my friend came in to check on me. I vomited that night (could have been the alcohol) and the next day had a huge painful lump on the back of my head. Next day I went on a boat in choppy water and thought I would die of the pain. After that I had migraines and neck and spine pain off and on. Chiropractic helped. I can recall at least 3 other minor head traumas probably with whiplash.
I've been told that I had "lots" of iron and calcium in my blood in the past but levels are now normal.
My brother and I had a very bad flu in 1982 and have had similar symptoms in the past few years. He was tested for SLE and Sojrens BC of abnormal liver panel results in 2004, but was neg. Dx'd with Discoid Lupus 2008, but tested neg. for SLE until this year when he was pos. and also told his iron was high. This was a few months after a bad fall from a roof.
I also think it possible that my dad and his sister had Marfan’s.
I had a flu in 1999 and got parvo B19 about a year later. (Doctors said my infant son had some symptoms of 5th and 6th disease, but symptoms didn't fit either exactly) Since 2004 I have had recurring bouts of viral symptoms as frequent as every 6 to 8 weeks. It goes like this : First I get allergy or cold symptoms, then a herpes-like lesion in the same place on my upper right butt cheek followed by migraine, severe fatigue, low or no fever, abdominal pain, spinal pain, joint pain, and the feeling that my spine is inflamed and it is jamming into my brain. I have never seen a doctor during the worst part of my symptoms. I asked my doc. To Rx prophylaxis acyclovir and it seemed to help for a few years, but my newest doc. said take it only when I get the lesion only.
Hip pain get worse and worse. X-rays normal. Tinnitus has worsened with infrequent bursts of noise and pain in right ear, stabbing needle pain in toes and fingers, swelling in ankles with sore dense areas, scalene and shoulder and upper outside arm pain.
OK, now for my questions.
1. Should I get back on acyclovir or wait to have another lesion and get it tested to see what kind of virus is causing it?
2. Could the pain and feeling of inflammation my spine and other symtpoms indicate Mollet’s?
3. Should I ask for a lumbar puncture or get tested for any other types of virus the next time this happens?
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