Valtrex (CFS patients with history of EBV)

Well, my doctor has agreed to try me on this.  It's obviously going to take a while, since you really don't see results for a few months.

I'll report back when I start and if I have any side effects/ results from this.

You can find more info on this by searching Dr. Learners name with the med, or in Dr. T's book (from fatigue to fantastic)

Hey Orion, I'll be interested to see how the valtrex works for you - hopefully you'll notice a difference in a few months. Clare, it can be so hard to tell if someone has CFS or not. I'm sorry about everything you've been going through and that now you are dealing with exhaustion on top of it. Your best bet would be to find a good doctor to talk about this with. Is it possible that some of your meds might be causing some of your symptoms? I really hope you get some answers and some relief soon. Take care

Hey Sparker!

     Refresh my memory.  You did have high anti-bodies for previous infecious of EBV, right?  Did you have CMV as well?  Valtrex doesn't work well with CMV, but yes... you will need to take it for atleast 2-3 months.  Most will see effects in the first 3 weeks, but some don't until 2-3 months.  According to Dr. Learner, you will need to be on atleast 3-4 grams a day.  I just started mine this morning, I'll let you all know how this goes.

 

Amy updates on Valtrex use? My doctor just prescribed some for me. I have diagnosed CFS.

I'm to start out slowly and increase gradually because I herx to so many things.

I'm eager to hear your experieinces.

Thanks,

CherylSue

I took Valtrex for EBV as I had very high titers back in July. My protocol was to start week one with 3000mg ( one [1000mg] pill 3 times a day) and then for week 2 and onward to decrease my dose to 1500mg per day.

After 3 months, I stopped cold turkey and was retested. My early antigens went way down and I have not had the mono like symptoms now for 2 months.

I do still crash in the afternoon but not like I did prior to the Valtrex. However, I also tested positive to Lyme Disease and believe that is what is causing most of my CFS symptoms.

If your insurance will pay or if you can afford the Valtrex, I think it is definitely worth it.

Best of Luck

I have had EBV for 14 weeks, ( bedridden for 11 weeks) and have thankfully started to feel a bit bettter and wanted to share what I've done in order to get back to a semi-normal life. I have been completely frustrated with the treatment for EBV....doctors just say, "Go home and sleep". This is not a good enough answer for me. I am fortunate enough to have good health insurance and I just wanted to share and hopefully help anyone who is suffering from this virus. I searched and searched for answers and believe me...there is really not much out there except for out dated and conflicting advice.

First, I have never in my life experienced anything like this virus and my struggle is still continuing. Thankfully, the bad days have started to become less and less. But, in the beginning, I really thought I was dying or going crazy. For the first 2 weeks, I could not move or eat. I finally got the diagnosis when I went to an internist and begged him to test me for everything. My EBV was 1522 and DHEA was 1342. I'm a 37 year old healthy female, the only problems I was having before this were hormonal issues and I was also in severe pain after working out (of course, people responded "you just need to work out more".....in my case, not so.)

My second lab test (about week 5 or 6 of virus onset) the EBV elevated to 2338. I finally broke down and started Valtrex, and it honestly helped ME alot. I wish I would have gotten the precription for Valtrex at the first diagnosis, but I'm hard headed and I'm not a big supporter of pharmaceuticals. But, with all honesty, they have helped me.

The early symptoms I had:
*fatique so bad, like the blood in my body wasn't even flowing; a complete energy crisis
*Dizziness & tunnel vision that both lead to nausea
*Extreme Muscle pain (especially in neck, back and legs)
*Insomnia
*Heart Palpatations
*Unable to think, eat, almost dulsional
* I had to force water into my body
*Weakness and tightness in muscles (for a week it was hard to walk and when I did get up it was like I was drunk)
*Migranes
*Major anxiety
*Sensitivity to noise and light
*Heartburn, constipation, severe stomach aches
*ear aches & buzzing in ears
*Mild fever
*Lots of tears, frustrations, bouts of anger

I'm about 75%. I still suffer from muscle aches and tightness, spasms, migranes and fatique. But, I am not bedridden everyday like I was for the first 11 weeks.

I read the book "From Fatique to Fantastic" and I'm following the vitamin supplementation in the book. It's alot of pills to swallow, but I will to anything to kick this virus. I do believe it has helped. I had low Vitamin D, so also I've added it 2 X a day. I would highly recommend Vitamin D if you are in bedridden. I wish I would have started it in the beginning of the virus.

I am doing restorative yoga just about everyday or when I can move or feel like it. I started a few dvd's about 4 weeks before I got sick and whenever I can do 5 minutes just to stretch my muscles I feel better. I highly recommend "Candlelight Yoga" and "Meditation for Beginners" they are both gentle and relaxing. I rented them from Netflix, then I liked them so much I bought them both from Amazon.

I am taking the following RX:
AM: Wellbutrin, Celexa, Valtrex (500 mg)
PM: Valtrex (500 mg), Ambien CR (12.5 mg)

Before I got the EBV onset, I was taking no rx drugs.

I have also changed my diet in MAJOR ways. I flew from CA to Portland, Oregon 4 weeks ago, around week 10 of virus (it was an very painful & tearful flight). The doctor did a blood test to find foods that were inflammitory and that my body was reacting to. Among the list were thing that I was eating alot of and I thought were healthy. On the list were eggs, all beans, flax, dairy, and others. I cut them out and I'm not having the bad stomach problems and pain. I know this is not for everyone. But, I am determined to not eat anything processed or in a box. This is out of sheer determination to heal my body and be healthy.

I now only ocassionally eat meat and my diet consist of mostly veggies and fruit. I use our juicer ALOT (atleast once daily, mostly 2 times a day). And...those of you that say eating healthy is expensive, I swear, it's not! At Costco, you can get in HUGE amounts organic carrots, celery, grapes, apples, oranges, berries, kiwi, plums. I am able to load up for around $55 for the entire week. This also provides enough fruit and veggies for my husband and daughter.

I hope that anyone that is reading this this that has EBV is surrounded by love, compassion and understanding. It is an unexplainable experience and I wish I could say that it has been easy. My only advise is to listen to what your body is telling you and give it what it needs. I can't tell you the things I have done will help anyone else, but I have reached out to many doctors and I recieved no real answers. I wasted alot of energy to try and find "the answer" at a time when I had very little energy available. I have a new found compassion for people with chronic illnesses. I hope that by sharing what I went thru, I can help anyone who is able to find this information.

I see this thread was going on a couple years ago, if anyone is still on this, I had some questions.  I've had CFS for over 10 years, every year it's a little better, but still don't have a normal life.  I developed hyperthyroidism at the same time as the CFS, not even sure what came first or even when I would have had mono. 

Now, I just got shingles and am on Valtrex 1500 a day for a week, to stop the shingles.  Most medicines cause me digestive trouble ever since I got the CFS.  And the Valtrex is already giving stomach pain, intestinal problems, etc. even taking it with food.  Has anyone had this? 

 

I don't think I could stay on it for more than 2 weeks, and also would be afraid that this would bring back my IBS that I had for most of the time I've had CFS; only got rid of it a year and a half ago.

 

 

Wow, I've been dealing with all these symptoms and especially the awful fatigue - bedridden for so long now.  I never really attributed this to anything except going on and off of things like prozac or effexor.  I have depression too so I was told that each time you go on or off of the meds, you get flu like symptoms and effexor can feel like you're practically dying with all the symptoms that erupt.  I just hung on for years doing this from med to med.  But the achiness and the fatigue was just taking over my life.  My mom finally said "go to the doctor and get tested for mono!!!"  So I did and didn't know that the doctor also tested me for EBV, CMB, HHB6, Mono, Lyme, Thyroid, etc, etc.  Then I got a phone call the following week saying that I had bands of Lyme showing up and even though it was only 2 or 3 bands, it was 2 of the ones that the body develops to fight lyme.  The EBV also came up highly positive.  My doctor explained that Lyme can carry 'co-infections' and cause some debilitating fatigue and certainly pains that "jump from joint to joint".  I was so confused because i never knew anyone with lyme and the last time I had Mono was like 15 years ago.  But the one thing I heard was to stay away from steroids because right now our bodies immune system is suppressed and steroids will only suppress it more.  Ugh!  It's been a year of Doxycycline, Tetracycline, and now IV Rocephin and the aches have completely gone away!!!  My fatigue is still extremely BAD and I'm doing everything I can to find ways to help that.  The problem is that both the EBV and the Lyme are still coming up positive.  Most people will test negative for lyme and not find out they have it until 10 years later so I guess I was told I was "lucky" that I found out early.  But what the heck can be done for the awful fatigue!!! 

I felt as bad as I have ever felt in my entire life (and I've had a bunch of awful sicknesses when I was a child) and it wasn't until I took enough months of Tetracycline and the IV Rocephin that those all "disappeared"  I'm scared to death to get off of the IV now.  I remember the pain, the anxiety attacks (now completely gone but come on with lyme), and the awful joint pains not being able to get out of bed or move my head because my neck hurt so bad. 

Well, I guess I don't know what I'm saying (sorry!!!)  I just want everyone to get better.  I just saw the movie http://www.underourskin.com - there is a trailer on their website and I read a book where patients were NOT helped by their doctors, but instead pushed aside, like they weren't important enough to treat.  I know RI and CT are the only two states that protect the doctors who try to treat lyme to beat it (what a bunch of political crap - sorry).  I'm just thankful I live in one of those two states. 

Now my mom is coming down with the same symptoms I had and the doctor she just went to did an EBV test (positive) but refused to do a lyme test!  My EBV was high just like hers but the lyme was the one that nearly killed me.  What is with doctors who won't even test you for diseases that are known to be around here.  Her daughter (me) and my dad (he caught it early and one month of antibiotics cured him) both have/had Lyme and yet doctors are pushing patients away when they want to get a lyme test.  He told her she has EBV from the past and it was probably a "flare up"  Her other bloodwork was great.  I feel like everyone is getting shafted by not getting the lyme test because the test for lyme will only catch about 50% of the cases - other people are shoved away and given steroids and suppress their immune system so far that by the time they find out they could have had lyme, they can no longer build up their immune system to fight it off with antibiotics.  I guess I'm lucky, they found it early, but with a White blood cell count of 3.0 and falling, I'm heading toward isolation room at the hospital if it keeps dropping.  Please urge your doctors to do everything possible for you.  Don't let them push you aside.  The Chronic fatigue has to come from something!  The Fibro has to be caused by something?  Please please try to find out what's the cause of these symptoms - go check it out - research it - we have to be our own doctors these days.  Sorry for the rambling on and on.  I'm only trying to help before it's too late for some people.  No harm in testing.  Please check out the trailer http://www.underourskin.com  because most of those people were also told that they had CFS, EBV, Fibro, MS, and more for years. 

Kristiana

If I've offended anyone Please accept my apologies!!!!!!  I am searching for answers too.  The doctors don't seem to want to help us so we have to share our own knowledge to help each other.  Please, please don't let me offend anyone here!  That is not my intention at all.  all of our diseases are VERY real and VERY awful!

 

Post Edited (Kristiana) : 7/17/2009 11:05:01 PM (GMT-6)

I also wanted to add that I was on Valtrex for a month (May) and my doc had told me I should notice a difference in about 2-3 weeks and I didn't so I stopped. It was causing insomnia and stomach problems for me. I never had any high EBV titers so I didn't think it would have done anything for me anyway.

Valtrex is only effective against HSV1, HSV2 and shingles. For reducing EBV (HHVT4) , HHVT6 or CMV viral loads you must take Ganciclovir or Valcyte.

Also you must get your viral loads tested before and while also taking these meds because there are different subtypes of these viruses and you might have resistance issues.

Hope this helps

Harry

I live in South Florida.  I need a doctor who specializes in EBV and CFS.  I am sick of being sick !  Please recommend a doctor for me. I can't find any in Florida, or even in the whole USA. 

I wanted to offer some hope to anyone suffering from CFS with high EBV titers.

My husband became ill in March 2007 (age 30), and was finally diagnosed with CFS in January 2008. I did a lot of research after the diagnosis, and became convinced that he needed to try an anti-viral.

I spent the next nearly two years trying to convince doctors to prescribe an anti-viral.

Finally, in October 2009, our GP agreed to try a 6-month course of Valtrex.

Within 10 days, we saw improvement. He was able to return to work full-time (after 2.5 years of disability), and now, three months later, he continues to improve. He had gained 40 pounds over 2.5 years of illness, and has already dropped 28 pounds. He is not only working, but working overtime.

I would caution that the Valtrex did cause stomach problems for him. After a couple of weeks, he went down to one pill per day instead of two, and that helped significantly.

I am writing this because ever since he started taking the Valtrex and seeing real, lasting results, I have been burdened by the fact that there are so many others how there who are suffering and cannot get a doctor to at least allow them to *try* taking Valtrex.

Do NOT give up. We visited doctor after doctor, and my husband wanted to give up. A couple months would go by, and I would pause in my efforts to seek more help. It seemed a pointless cause. But I could not let it go. Push and push and push, change doctors if you must, but figure out a way to try Valtrex. I realize it won't work for everyone, but it may work for you. We had tried everything before this, so we had very little hope that the treatment would work.

If you have any questions, feel free to e-mail me at sarakparker@sbcglobal.net