I seriously thought I was going to die while taking the drug. It did a real number on my mind! When I discontinued the drug, the thoughts that I was going to die stopped.
Hope you're doing better. I've heard from a good friend that shingles is the most painful thing he's ever deallt with. You may want to look into staying on Valtrex if you're doing well now. Talk to your doctor---Scott1 has something there.
Here's something for you to read- HHV and MS flares
dx dual jugular vein stenosis (CCSVI) 4/09
I understand why some people have problems with Valtrex. It's a comparatively new drug. What it does is wreck the RNA of Herpes family virus when they try to replicate. This causes a release of toxins into your system so initially you feels worse. This is called a Herximer reaction. If it's intolerable just lower the dose but persist. As the virus weakens under the onslaught of the Valtrex the discomfort will subside. Then increase the dose again. I take one morning and night. The original commercial use for Valtrex was a high dose burst treatment to combat genital herpes. Shingles, Epstein-Barr, cold sores and many other illnesses are in the herpes family. What makes them so persistent is they need a host cell to reproduce. They use yours. Every time you make a new cell in your body and the virus is residing in it you will make a new copy of the virus and your viral load increases. Valtrex works most effectively at the point of replication by disrupting the viral RNA. It really needs very long term, persistent use to lower the viral load.
I use Valtrex specifically to lower my viral load but its only half the story with MS. Valtrex cannot signal the immune system to behave correctly. Its only function is to disrupt viral replication. We MS people have a malfunctioning T Cell receptor called CD8. In healthy people , their CD8 T cell sees a virus and it starts the process of producing interferon and antiviral activity and that fights off the virus. Our CD8 T cells do not start the cycle of producing interferon in the healthy way. Interferon is the natural agent that makes you ache when you're getting sick. We need to boost our Interferon to wake up our immune system to do something hence products like Avonex. Sometimes these Interferon injections are just about intolerable because when we wake up the immune by injection it just sees so many infections that it hadn't noticed before.
I have put a number of posts up talking about the same thing with links to research articles. Some people have found the newspaper articles that try to talk about the same research and have posted them. They are all tied into the same work that noted that Vitamin D has a role to play and it explain why the incidence of MS is lower closer to the Equator. In simple terms, Vitamin D binds to the receptor on CD8 and changes its behaviour. Vitamin D is synthesied by Sunlight hence the lower incidence.
The politics of medicine is very stubborn. What I have learned is many medical practioners do not read their peer literature even if the subscribe. They are reluctant to deviate from the standard line for fear of ridicule or charges of negligence. Please print this article and take it to a doctor who you think will help you and give it a go.
This is not an easy way back. It probably took you 20 years to get sick. It will take 10 to get the viral load way down because you just don't make new cells quicker than that. The good news is you should feel a lot better in a short time as the virus starts to retreat and your fatigue should disappear. It needs a bloody minded persistence to do this and there will be set backs as your body wages world war 3. I don't pretend I can't slip backwards but I have been free of any MS symptom for some years now. Very recently I have developed a bout of gout. Valtrex is a purine and elevated purine causes gout. I'm assuming that I am now the most hostile place on Earth for a herpes family virus if I have altered my system that much over a decade. I'mn happy to start modifying what I do now I have reached this place but until I know what I do next I won't post any suggestions. I'd rather deal with self inflicted gout than MS any day.
Hope this helps.
i took valtrex for a week and the symptoms of shingles disapeared completely.. that was a month ago.
so, i am confused now, why do u suggest that i have to stay on it?
Medical practioners use Valtrex in short bursts to stop an outbreak of genital herpes or shingles. They don't want to be accused of overservicing so when the symptoms disappear they say their job is done. They know that the virus is still resident in your cells but if the flareup has been controlled and no more symptoms are apparent they discontinue use. They assume that your immune system will be able to control the virus whilst it has been weakened but they absolutely know that you can have another outbreak, particularly if you are run down. They are not prescribing it as an MS treatment because a) they don't associate MS with a specific virus and 2) they can't measure what it's doing when the obvious symptoms in a classic herpes skin issues flare up have been resolved. Basically they are just being cautious. If you have a medical practioner who is prepared to make the association with Epstein-Barr then logically they should support this approach.
The simple rule is if you have a virus that replicates each time you make a new cell you need to do something to interrupt the viral cycle so you make clean new cells. This takes years. Your body does this at it's own pace. I have been constantly interrupting the viral cycle not just in bursts. As my viral load diminished so did my MS symptoms.
It has taken me a long time to understand why I have improved. The penny dropped when I developed gout and realised how toxic I must have become for Epstein-Barr. I haven't verified any work work that proves that people with gout and MS are in mutually exclusive sets but when I googled "MS + gout" up popped a whole lot of articles that suggested they probably are. That made ask the question about myself. When I checked what Valtrex actually is I discovered it was a Purine and elevated Purine causes gout. The logical thing for me to do is have my Epstein-Barr infection verified by a pathologist. I will do this soon.
It took you a long time to get sick. It take some time to get better as you are relying on making new clean cells and it takes time. You do need to keep waking up the immune system and thats why you need an Interferon as well. It's job is crucial. Valtrex on its own is not a magic bullet. You have to go through a significant amount of discomfort. The first time I used Avonex I thought I was being exorcised and I was definitely going to die in agony. I did persist and the real benefit only emerged when I combined the Valtrex with the Avonex.
Everone will have a differing viral load so it will be harder for some compared to others and once you shake up the immune system with Avonex it will try to indescriminately attack any underlying infections you have. I suggest you find a really good doctor who will test you for everything that a sick person might be struggling with along the line of mycoplasmas, prions etc because if you're run down you could have lots of things wrong. The immune system will really go into overdrive with this approach and that can make you feel awful initially.