Just went to Dr. Dantini last week....ordered bloodwork on this list of viruses.

[Zensational]

Hi,
I am new to this forum even though I have had CFS/ME for 28 years. That was way before the medical establishment recognized or knew what it was. I carried in all of my past treatments....as you can well imagine there were many and most were out of pocket.

Based on my history and a physical exam he ordered the following bloodwork.

1. Epstein Barr Panel
2. EB ITM
3. EB IGG
4. EB NA
5. EB EA
6. Cytomegalic virus, IGG and IGM
7. Human Herpes 6 viruses, IGG and IGM
8. Parvo virus, IGG & IGM

I understand that Famvir and Valtrex are the most commonly prescribed antivirals and are often given in combination. He said that given the length of my illness I would most likely need to take the drugs for 6-9 months. I am wondering what to expect on the antivirals.
I am very concerned that I will never get my life back. I have almost completely lost my ability to sleep. I was recently diagnoses with Partially Empty Sella and have an appointment with an endocrinologist. I have almost every symptom of CFS/ME with late onset migraines.

Has anyone taken the combo of antivirals Famvir and Valtrex and actually slept better and had more energy?

Thanks,

 

[Patrick*]

I'm on Famvir (but not Valtrex), so I can't directly speak to your question. But I did want to share something about the length of anti-viral treatments. My understanding is that anti-virals need to be long-term treatments because of the unique way they work. Anti-virals don't kill the viruses, but rather they help prevent the virus from replicating and infecting new cells. You have to wait for the the cells that are already infected to sort of die of natural causes and then be replaced by new, uninfected cells. At least, that's the gist of what I read from Dr. Learner's papers. I think Dr. Learner recommends about 2 years of antiviral treatment, for what it's worth.

On the other hand, someone here said his EBV began to improve, as shown in blood tests, within I believe he said 4-6 months...or somewhere in that time frame. So it might be possible to see improvement earlier.

I've only been on Famvir for about 2 months, and so far I haven't noticed a difference in how I feel.

Good luck to you.

 

[ukxmrv]

Sounds like some good tests. I've had ME as per Ramsay (acute viral onset) for maybe slightly longer than you and have had variations of these tests over the decades as they develop and new viri found. The ones with noticable results have been EBV, CMV and HHV6 for me. Haven't been able to affording testing for a few years now.

Valtrex had almost immediate good effects on my viral symptoms (sore throat, glands etc) and over about 2 years a slow and smal improvement in physical functioning. The first thing I noticed was that the burning sensation at night in my lower limbs was better. Adding Immunovir to the Valtrex was also beneficial. I'm no where near a cure as the post exertional malaise is as bad as ever plus the weakness, POTs etc. I don't get migraine and sleep is OK but only late onset as before.

It may be that if I increased the Valtrex dose or added other antivirals like Famvir I'd be even better. Cannot afford to do this however. Most recently I tried MAF314 and that has been another boost to my health. One of the good things for me about the Valtrex was that there were no side-effects. As you may have noticed before with things you tried for CFS over the decades that is a bonus.

 

[Zensational]

In need of emotional support.

Thanks for the encouragement and information. I guess this is the most devastating part of this illness is that I feel like I have been overlooked or forgotten by society. I see friends doing activities I would like to do but I am not able. My coping strategy is not to compare myself with others and to be grateful for what I have. Not so easy some days I know.
I will post the results of my bloodwork here for comments. Some of you are much more knowledgeable tha I am about which drugs are best.
One thing we are planning to do after the antiviral treatments is to have stem-cell treatments, probably adipose treatments. My husband us researching this because he also has the virus and sleeps probably 12 hours a day.
I, on the otherhand, can't sleep at all during the day. We are like opposites. :innocent1:

 

[Patrick*]

Zensational, I'm really struggling with the emotional/coping part too, as I'm sure most of us are. At first, I never allowed myself to feel sorry for myself, thinking that was a sign of weakness. But lately, I've decided "screw it, if I'm feeling sorry for myself, then I'm entitled to feel that way and I'm just going to go with it." I figure, as long that feeling doesn't become my dominant emotion, I'm fine.

I agree with your coping strategy of not comparing to others. I try not to do that either.

One thing we are planning to do after the antiviral treatments is to have stem-cell treatments, probably adipose treatments.

Woah, this got my attention! Please report back...

 

[ukxmrv]

If the antivirals don't work then there are lots of things to consider. Dr Cheney used to use stem cell treatment for some of his CFS patients but I don't know if he continues to do so now.

Good luck. Will watch out for your post.

 

[Zensational]

Thanks,
There are different kinds of stem cell "treatments". We are still researching this and my wonderful husband is doing that. I will post anything that I find out on a new thread. I am aware that Dr Cheney was taking CFS people to Costa Rica and Panama for treatment without much success. I do know that it is important to do the anitviral protocol first to get the virus(es) down before stem cell treatment. I am mainly going for rejuvenation and prevention of alzheimers disease and I am hoping to get my pituitary to start working well again. But all this is still under review and study. We will make our best determination once all the tests are in.

 

[equestrian111]

dr dantini

I first went to Dr dantini 10 yrs ago when I had fybermyalga (sp.) I tested high for epsteins barr and herpes type 6. Went on valtrex and within 4 months...was well. Now 10 yrs later I have cfs....and retested...viruses are back. Back on valtrex for past 2 months. Have 3 good days then 5 bad ones. I did not do allergy food tests because do not have stomach issues. But I decided to go gluten and sugar free to see if it helps. I am also going to northampton wellness center in a few weeks for another opinion.

 

[grant107]

Don't tell Dantini if you have tested positive for XMRV. He said he could not treat someone with rat dung and was not interested in anything that was going on with me. He seemed so angry about XMRV. I have never been to such an unprofessional doctor.

 

[Zensational]

Don't tell Dantini if you have tested positive for XMRV. He said he could not treat someone with rat dung and was not interested in anything that was going on with me. He seemed so angry about XMRV. I have never been to such an unprofessional doctor.

He does refer to XMRV as a virus that is contracted by playing with rat poop. He didn't seem unprofessional about it though but then I was not ever tested for XMRV. It seems to me that there is a lot of misinformation about CFS/ME and Fibro. Dantini says that CFS and Fibro are from the same viruses, same disease, just presenting differently in people. I tend to think he is correct about that. Not sure about the XMRV rat poop thing though. Perhaps that is how is gets started but once it is contracted by humans maybe it is spread differently.
I wish it was easier for us all. I have been down many dead end roads in 28 years and I hope this one is a good one.

 

[Zensational]

Okay test results are back and I tested positive for EBV 8 times higher than normal IGG. And Positive for CMV 6 times higher than normal.
He prescribed Acylovir 800 mg 4x daily with 5 refills.
That is for 5 months. I have a friend who takes Valtrex for EBV and she takes it every day.
I don't want the viruses to recur once in remission so I think I will stay on top of this and make sure that I keep taking the drug.

 

[mellster]

That seems likely outcome for the testing and if you can treat those infections, esp. the EBV then I would think chances for recovery are very good. I am not sure why people are clinging to XMRV - I am not saying there couldn't be something to it - but just going by Occam's razor and reading a lot about EBV it is not surprising to have chronic reactivation for people with a Th1-deficient immune imbalance, even in healthy people EBV keeps testing the immune system for the rest of their lives. Good luck and go get em