13th week of Valcyte

1 year on Valcyte

Nov 3rd was my one year anniversary on Valcyte. I recently just came off it again to see what would happen, I did this by necessity really and not by choice due to insurance purposes. I felt all the symptoms that i normally associate with ebv come back again but this time they were milder. I can see how the Valcyte has helped me over the year that I was on it but it was not the cure I was hoping it would be and it would seem that I would I have to be on it long term for it to work. I am very disappointed. More disturbingly several other symptoms that I consider part of my cfs were not treated by the Valcyte and seemed to be happening even though I kept testing neg for ebv in my blood while going through it. I am beginning to think that there is something else behind my cfs even as ebv causes the tail end (more severe) of my chronic fatigue symptoms. I am still experiencing many auto immune issues while keeping the ebv at bay, most recently I experienced a relapse with a change in a weather and bizarrely the symptoms seemed to be triggered by the flu virus as Tamiflu seemed to help despite the fact that I had the flu vaccine shot.

I have self-diagnosed myself with ebv induced lupus even though my ANA is neg and my ESR is very low. I decided that this is what I have after reading how high the correlation is with pple having lupus after coming down with ebv. All my symptoms are also very very similar. But I have decided that since I am having a flare up/relapse while the ebv is neg in my blood, the cause of the lupus could be something else entirely. I am looking into Lyme and yeast/fungus even though I have nvr really tested for that or tested positive for either of that.

I am thinking of going back onto natural supplements for awhile even though they cost me a bomb. I have also decided to start taking Plaquenil for awhile to see how that works. I am taking it because it is recommended for lupus sle but now I hear that people with lyme take it too so I am confused again. So much overlap. I remember that artemisinin and thymus used to help when I was taking them.

One point to note in all this is coinfection. When a person comes down with a cold which is caused by a virus a doctor might prescribe him abx for it. This is because there is no AV for the cold virus and also becos many other opportunistic pathogens then take the opportunity to assault the body. It is possible that you would have to treat everything at the same time as you just don't know where the next attack is coming from. I think my point is to be aggressive if you can be.

Valcyte is not particularly effective for EBV compared to Valtrex, for example, so maybe a switch to a different antiviral would help...?

If you're actually fighting an HHV-6 or CMV infection with the Valcyte, it could be that you have a neurological infection -- not at all unusual with HHV-6, I think. It's not easy to get medications across the brain-blood barrier to get at a neurological infection. After about a year, I was switched from a twice daily dosing to an all-at-once daily dosing in order to "get better tissue perfusion". I did notice a step-change improvement shortly after that.

I think, that the docs most experienced with Valcyte are finding that it takes at least 18 months with PWME to get the best effect. My daughter is in remission (but still on Valtrex) after 18 months on Valcyte. She was better, but not nearly that good at 1 year.

Another thing to think about -- if PWME are unable to fully suppress herpesvirus infections (for genetic or other reasons), we may need to take something like Valtrex long-term, or at least periodically. The human body never gets rid of herpesvirus infections, it just suppresses them, so we may need medicinal support to accomplish what other people's bodies do naturally.

What kind of symptoms do you have that don't appear to be ebv-related? As you say, they could be the result of other infections. Goodness knows PWME seem prone to a lot of different infections.

Each way bet with famvir as it works on ebv and myself cmv and others it has lower hhv6 titres, plus its know where near as toxic and cheaper so can use it longer then valcyte maybe??

cheers!!

I am beginning to think that ebv is the last of my problems. I do fine with just Valcyte alone and Valtrex does nothing for me. In fact Valcyte alone can bring my ebv done to the undetectable range. So maybe ebv is just opportunistic after all and something else like HHV6 is at work. What is the dosage of your all-at-once dosing like ?

I just want to take a break from Valcyte for awhile I guess. I think a year is enough. I know someone who takes Famvir for ebv and it works for him but he takes lots of it though.

One symptom that I notice from time to time, not alot is that I have sugar cravings sometimes. I am not sure what brings it on, but I was shocked that only a few days of diflucan and the symptom went away. Does that mean i have a candida/yeast/fungus issue ? Idk.

This veers off topic, but it responds your question, on your thread, so.....

I did a stool test despite having no indications of issues, because Rich thought it would be a useful piece of my puzzle. I have candida at the highest level they can register. Just sayin' - it's sneaky.

Madie

I notice that with ebv and/or hhv6 suppressed nowadays every time I am fighting an infection, it isn't so bad. It's like the symptoms of the infection isn't so magnified. For example if I have a cold, I can tell that I am having a cold and that is all I have or if I have the stomach flu virus then all the symptoms that I have will just correspond to that particular infection. With the ebv and hhv6 constantly flaring up in the past, at one point, I could nvr tell what I had and it seemed to nvr end as well. All it took was some infection by some random bug that would trigger a relapse that would last for months because the ebv had flared up.

In some ways doctors already know about what ebv/cmv/hhv6 can do. Post mono fatigue, post viral cfs and ebv induced auto immune flare ups are all very well documented in the medical ommunity. What I don't understand is why they are not making it more widely known so that even pcps can look out and treat for it. That makes no sense to me at all.They know that the earlier in life you are infected with these viruses the better you are able to handle them. EBV induced lupus is a big deal with me becos I am convinced that it is what I had all along. I think ebv actually primes the immune system to be more prone to flare ups. Even the flu virus can cause a flare up.

I am ODing on Zymafled (+ Licorice) and Pancreatin ( Wonbezyme) the next time I get hit again. I am going to be aggressive and go to them as soon as I sense that something is wrong. It will be one step just below steroids/immunosuppressants for me. All that grind I used to feel in the past that kept going on and on was the lupus flare up running its course. Now my goal is to cut that process, I could nvr do it before or if I did I nvr knew what worked or understood what was happening. It was that bad.

Another thing I am also realizing is that after trying some other stuff, I am coming back to ebv and hhv6 again. They seem to be the culprits even if they are opportunistic. My forays (sic) into abx and antifungals nvr really worked. I seem particularly prone to virus triggered lupus attacks and I hv to watch out for that. *I hv tons of refills for Diflucan and Doxy, hint hint*

"In many instances of lupus, unusually high amounts of a protein known as B lymphocyte stimulator (BLyS, pronounced 'bliss') allow overactive immune cells to slip past the body's defenses and into the circulation. Benlysta works by blocking BLyS and thereby allowing B cells to undergo regular programmed cell death instead of going rogue."

I found this on promotional material for Benlysta. I think we might find it very prescient for me/cfs considering that they are now also looking for an autoantibody. I have no problem believing that these 'overactive immune cells' then go on to attack the organs of the body, mitochondrial cells and basically every part of the body, causing may of the symptoms of me/cfs that we know. They would even attack normal immune cells weakening the immune system causing us to be more susceptible to infections healthy people are able to fight off.

Also looking into Methotrexate ...

Hey everyone so I had a minor setback in my Valcyte treatment in that my Liver ALT and AST enzymes skyrocketed so I had to go off the Valcyte which was very disappointing for me. I am a patient of Dr. Lerner. My CFS indicator was high titers to CMV, a CMV-only CFS inducing infection, no co-infections. I'm young at 29 years of age and otherwise healthy so my prognosis is great according to Dr. Lerner. I've had CFS for 13 months. I was on Valcyte for 2 and 1/2 months before I was forced to stop. The improvements during that time were very, very subtle..But, I did notice a difference! It became especially apparent after about 3 weeks of being off Valcyte because my CFS symptoms returned to pre-Valcyte levels.

I attribute my high ALT and AST enzyme count to other medications I was taking while on Valcyte. The other meds were Motrin (for general pain) and Amitryptline (helped me sleep and relax). It turns out that both meds can cause Liver enzyme counts to increase. Also, I made the mistake of drinking alcohol while on Valcyte which turned out to be a big mistake.

I expect to go back on Valcyte early next month when my Liver enzyme count should return to normal. I'm so convinced that Valcyte will work for me. I just need to be patient! And I need to avoid the things I listed above ;-)

Has anyone experienced Liver enzyme issues while taking Valcyte? If so, how did you resolve those issues?

Also, this question is a bit off topic, but does anyone have an opinion on Rituximab? It is receiving a lot of attention recently as possible alternative treatment for CFS.

I resolved my liver issues with mega doses of B vitamin supplement and Milk Thistle.

Thoughts about Rituximab

So they are looking for an autoantibody an autoimmune disease like Lupus which is totally what I feel I have.

They know that depleting the body of B cells make patients feel better and they know that the EBV virus hides in B cells. So maybe they can look for the autoantibdy there ? In infected B cells. Also in this case AVs would act as a form of B cell depletion therapy too because they do not allow the infected B cells to reproduce and let them die.

I have decided to change my approach towards my CFS. No AVs and no ARVs. I have decided to approach my CFS from an auto immune illness point of view and take medication that treat autoimmune diseases instead of viruses. I will attempt to reduce my dosage of Valcyte.

I will soon start taking Plaquenil, Artemisinin and Methotrexate at low doses. I am already on Vitamin D on a high dose during the colder months. I will focus on medication and supplements that reduce inflammation and reduce the severity of relapses.

As I understand it the dosages of Plaquenil and Methotrexate for lupus are 200mg 2X a day and 21 mg a week. I will try to go on half of those doses along with about 300mg of Artemisinin.

Have you ever tried hydrocortisone or prednisone and had any improvement?? I dont think these drugs would be a long term solution but are used for flares in auto-immune disorders with some success, probably by calming the immune response down?? Only problem being is if there is an infectious component then suppressing the immune system can be hazardous for this.

Make sure u keep us updated on your progress.

SO do u think the antivirals and retrovirals have given you an lasting improvements??

cheers!!!

No, AVs or ARVs did not give me any lasting improvement. I hv been on Valcyte for a year, I think that it enough and I also do not think that it addresses the root cause of my CFS. Preventing and minimizing flare ups should be the main aim. I will treat future relapses with Licorice and maybe Medrol Medpak ? (sp) ? I find that a main trigger for my flare ups are viral infections, whatever they maybe eg. colds/flus/ stomach flus ...

If the main problem here is defective B cells that allow EBV to be able to infect them and escape detection by the immune system anyway, then AVs won't be able to work long term because we will always have defective B cells that will from time to time produce autoantibodies on triggers. This is what I have been experiencing all through my life. Being on the Valcyte long enough will give the body time to clear away the infected B cells but you will never be able to really clear the body of EBV so even if your next EBV infection is mild it will only get stronger with subsequent infections as more and more B cells get infected again without AVs. You need something to alter the immune system make it not so vulnerable.

Don't get me wrong, everyone makes autoantibodies under stress and triggers, I think that we are genetically predispositioned to produce more and under the rite circumstances ( viral infections ) can become a vicious self-reinforcing spiral.

Random Herx observation - Artemisinin and stuff

As recently as 2 years ago maybe, I used to experience Herx reactions from drugs that were supposed to be helpful for my condition. Artemisinin is one that comes to mind most immediately, I remember another anti malarial drug by the name of Cryptolepsis gave me the same reaction too. Chills in my extremities, headaches sudden temporary lack of memory recall. I would use to go on them, then stop them and then go on them again if I felt better.

Then one day the Herx reactions just stopped. I don't remember the order but it maybe because I had taken the AVs for awhile but when the Herx reactions stopped I thought that the AMs (anti malarials) stopped working for me and I stopped taking them. Looking back I think this was a big mistake because I realise that I feel the best when I am taking them long term and on the AVs as well. Now I realise/understand that taking them long term helps prevent/reduce the relapses or flare ups. I also notice that recently when I tried to load back up on the Artemisinin, I did not experience any Herx reactions at all. I respond to it like anyone with lupus or an auto immune condition would. Transient side effects, nothing too uncomfortable.

This has happened before but I never quite realised it until now. When I am on reasonably high doses of Artemisinin, I am able to cut my Valcyte dosage in half. There even days that I am able to go with out. Artemisinin alone is able to hold back the EBV infection to quite an extent. I guess the Methotrexate will just have to wait to be added.

In regards to the antivirals, were you taking them for EBV alone or other viruses combined??? When you say that the artiminsin controls EBV, is that based on the way that you feel or blood results from the valcyte reducing the viral load systemically. I guess my rhetorical question is that do the AV's have a cumulative effect, or is it only viable when you are on them and then they re-build after you stop. I tried AV's over the summer, had a bad time with kidneys and then blood pressure went haywire.

I am continuing with kutapressin, and my viral numbers have continued to come down. It makes me think for me at least, the viral issue is an after effect of the real problem which causes me fatigue, PEM and sleep issues.

I think many of these infections come about due to something causing immune supression and these herpes viruses reactivate because of this. I think this is why treating these viruses with antivirals helps many of us alot but isnt a cure as such, maybe we do have some type of retrovirus and our immune system is down like in HIV and then we are open to all the co-infections as well like in HIV???? We just have to hope researchers find whats causing this immune problem.

cheers!!!

I was taking AVs for EBV and HHV6. I realised that artemisinin has controlled EBV for me in the past before it was just that I was nvr able to put the 2 n 2 tgt. Over the summer I experienced a period when I was able to reduce my AV dosage and yet the EBV did not come back. Lab tests for EBV by PCR DNA confirmed this at that time. This coincided with the time I was on Artemisinin and my relapse in the fall also coincided with the time that I ran out of artemisinin and did not order it again.

It does have a cumulative effect in that AVs remove defective B cells in circulation. This will reduce the number of B cells that are available for EBV to infect. If you are on it long enough, your viral load will drop and it will take time for the virus to multiply again when you discontinue the AV.

I totally agree with your statement below. Neither EBV or HHV6 is the culprit or cause of CFS IMO, that is why I have moved away from that route of treatment. I would definitely recommend long term artemisinin and hi dose Vitamin D.