HELP! Trying Valtrex for CFS

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CFS_Kristin
New Member


Date Joined Sep 2016
Total Posts : 1
   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!!! :)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15290
   Posted 9/10/2016 1:10 PM (GMT -7)   
Hello & welcome to Healing Well. I read in a lot of the forum shere at Healing Well & saw that no one has responded to your post. I wanted to pop on & say hello & welcome aboard.

I did a search back through the archives here & saw a few posts about Valtrex & CFS. The search feature is located at the top & you can type in Valtrex for CFS & pull those old threads up to read. Most likely the members that posted are no longer active here at Healing Well. If you will click on the members name it will show you when they last posted here in this forum. We ask that you not post on the older threads as people tend to ignore them.

It sounds like you have really been put thru the mill. I do hope you have success with Valtrex & can get up on your feet again. Would love to know how well you respond to this medication.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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