Posted 9/7/2016 2:25 PM (GMT -7)
Hi Everyone! I was hoping someone might be able to help me out.
I am a 28 Year old female and I became very ill after the flu last March 2015. (Actually I got the Flu shot November 2014 and a few weeks later developed fatigue, but got really bad after the flu)
It was an upper respiratory flu like illness lasting 1 week, was put on antibiotics, a week later started vomiting. (Doc thought it was probably from antibiotics). After that, I kept getting sick, and developed a bad debilitating fatigue. For 8 months I struggled to work, would come home and crash. On weekends I stayed in bed to recover.
Last October 2015, all hell broke loose. I went through a breakup, was extremely stressed at work, and finally landed in the Hospital. I had a slight fever, my arms went completely weak, flu symptoms, I could barely move. At the hospital all they found was Strep Throat and another round of antibiotics. (which I blew up in a rash from)
After that I became completely bedridden for 8 months, unable to do anything but lay in bed. I had migraines, canker sores, terrible heartburn for 1 month, rash on my legs when I would shower, stomach pain/vomiting, lost 15 pounds, bad flu symptoms, I couldn't even talk too much I was so weak.
I was diagnosed with everything from Lyme Disease to CFS and also diagnosed with Rheumatic Fever. Was put on a 2 month round of antibiotics, but then several other docs told me I don't have Rheumatic Fever, so thoroughly confused and stopped the antibiotics.
I also started having fainting spells, they checked my aldosterone hormone and it was extremely low, a 2 in the morning. I started taking Florinef (.05 mg) in the AM. I was diagnosed with dysautomia/some symptoms of POTS which may explain the rash on my legs in the shower and low blood pressure.
I've seen around 17 doctors, the latest doc is a CFS specialist. I'm trying to get in to see Dr. Chia, although his waitlist is 7 months. I finally begged my doc to give me Valtrex to try for a couple months after reading about Dr. Lerner and Dr. Montoya. I started 500 MG (2 x a day) last month and the first couple of weeks felt a little worse (migraines/flu symptoms). I am feeling a tiny bit better, might be too early to tell. I've developed on and off bad stomach pain/bloating this past year while I've been sick, and was told I had gut motility issues. Not sure if the Valtrex is making the stomach pain worse (just started again this past week).
One thing that threw me for a loop, last weekend I tried drinking Kefir (I've been reading everything I can on how to heal your gut and most recommend probiotics/kefir) and got TERRIBLY sick. Migraine, nausea, flu symptoms, it took me 4 days to recover. My current doc said stay away from fermented foods.
A year later, I'm still housebound, unable to work. I am definitely better than I was 6 months ago, however not well enough to work or drive. My parents are taking care of me.
I've been tested for everything under the sun (full autoimmune work up - completely normal) and here are some of my results:
My ASO Titer: 259 - Dropped to 242 after antibiotics
Streptozyme Screen: 800 - Dropped to 400 after antibiotics (not sure what it is now)
Herpesvirus 6 IGG - 1:80
EBV (VCA - IGG) 4:15
What I've tried:
18 vitamins + supplements a day
UVL RX Light treatment (they put a cathedar in your vein and sends out 3 different lights) - I did about 15 treatments, and this did help me
Vitamin C IV 15,000 MG - I did about 3. Felt very sick after everyone of these
Vitamin IV with B12 - Felt fluish after these too
Steroids - Didn't help too much
Antibiotics - Zpack (2 times), Amoxicillin, and Sulfadiazine
Valtrex - currently taking 500 mg 2 x a day. Will start taking 3 X a day once my stomach stops hurting.
Florinef - currently taking .05 mg in the AM
I'm thoroughly convinced I either have a reactivation of my EBV/HHV-6 OR an enterovirus. However, most of my docs think the virus is gone, (if I had one) and it's just wrecked havoc and inflammation on my body.
According to Dr. Lerner and Dr. Montoya, my IGG for HHV-6 and EBV they would treat as an "active" infection with antivirals. I also know Dr. Chia tests for Enterovirus in the stomach, which I want to do a stomach biopsy for.
Anyone have any thoughts? Tried Valtrex? Seen Dr. Chia? I'm SO DESPERATE FOR HELP!!! :)