hhv6 what to do???

[Nabo]

Hello everybody

I am Nabo from Holland, and i am a patient of De Meirleir.

I am now 1 year in treatment and i dont have much improvement.

There is a lot wrong in my body, overgrowth bacteria, leaky gut, fructose mal, fungus etc...
I am always at home and i am almost bedridden.

Now we found out that i have hhv 6, high titers.

I already tried acyclovyr, valacyclovyr and amantadine.
Diddnt work!! and i had so many sideeffects!!!!!

But now i dont know what to do.....
Valcyte?????
But that is so expencive...

Can someone help me???? What can i try??
And is it possible that i am so sick because of the hhv6 ????

 

[heapsreal]

Antivirals are a long term treatment as in years, improvement takes a few months to notice. An alternative to valcyte for hhv6 or cmv is famvir. There are some cheap online pharmacies that sell quality famvir. I had good effect with 250mg twice a day, some use much higher doses but myself never noticed anything extra from higher doses, acyclovir valcyclovir arent effective against hhv6 or cmv, only ebv. Also look into immune modulators like immunovir and cycloferon to strengthen your nk function and immune system, this can also help with other co-infections.

cheers!!!

 

[Rita]

You have a very good doctor, the most famous in Europe,I'm sure he can answer your question.And how about GcMAf he uses with his patients?
Like heapsreal write, treatment with antivirals is a long way, for a lot of months or some years, till another solution comes.
KDM is always trying new meds or drugs, be patience.

 

[Timaca]

HHV-6 can make one quite ill. I know one man who was very ill, even bed bound at times, and he is now well after 8 months of valcyte. I know others, me included, where valcyte helped but did not cure us. We have other pathogens (like Coxsackie B) also making us ill.

These websites may help you: http://www.hhv-6foundation.org/
http://chronicfatigue.stanford.edu/

Best, Timaca

 

[Daffodil]

Nabo...may i ask how high your titres are?

i hate it when i hear about people not being able to afford valcyte. i had bowls full of it that expired. i wish there was a way to share our meds legally

 

[Nabo]

Thanks everybody for response.

I am sorry for my bad english.
I diddnt explained it good enough.

I cant take the acyclovyr and valacyclovyr because i couldnt tollerate them.
I had so many side effects i was so sick because of these meds.
So i ment they diddnt work for me, because of these side effects. I am intollerante for a couple of meds and also lots of food etc.

My titers where: hhv6 0 - 50 --> 1150

@ Timaca woow thats very good! 8 months wow!

@ daffodil: Really?? How much cost valcyte in america?? Here we have to pay the first month 3000 euro and after that 1500 euro per month.

 

[heapsreal]

reactions to av's can be a die off type reaction, maybe best to start on immune modulator first and introduce antivirals later, also like Rita has said gcMaf is something worth looking into. Reducing your viral load by other means before using antivirals could help with die off reactions.

cheers!!!

 

[Nabo]

i already have taking gc maf for 6 months.

I should ask meirleir about the immune modulator.
Any suggestions ??

 

[baccarat]

I've always been sceptical about antivirals and their ability to cure. If that were so, none of us would be here to talk about it.

Nabo,
I'm just raising some points you may want to discuss with your doctor.

*What are your glutathione and glutathione peroxidase levels?
Glutathione is strongly antiviral and if your own body can make enough of it you should feel better. Pls see
discussions and presentations about the methylation cycle/protocol in the forum.
* Your selenium status? It's needed by the body to make the enzyme glutathione peroxidase. Selenium is strongly inhibitive of all the herpes viruses, you may want to check you have enough in your system.
* NK cells activity? This is a tricky one. There's lot of stuff supposed to make NK cells work better. My personal experience with a lot of it, some quite expensive, was quite disappointing. May be your doctor knows how to help with this.

I'm sure there is other relevant stuff to consider and it's important you have an open discussion with your doctor.
I'm becoming more and more convinced that we all need to clear our system of parasites which may weaken our immune system. I'm not a doctor and don't know if that could help with viral loads. That's something I'm considering at present and going to try.
Hope your doctor can help.

 

[heapsreal]

I've always been sceptical about antivirals and their ability to cure. If that were so, none of us would be here to talk about it.

Nabo,
I'm just raising some points you may want to discuss with your doctor.

*What are your glutathione and glutathione peroxidase levels?
Glutathione is strongly antiviral and if your own body can make enough of it you should feel better. Pls see
discussions and presentations about the methylation cycle/protocol in the forum.
* Your selenium status? It's needed by the body to make the enzyme glutathione peroxidase. Selenium is strongly inhibitive of all the herpes viruses, you may want to check you have enough in your system.
* NK cells activity? This is a tricky one. There's lot of stuff supposed to make NK cells work better. My personal experience with a lot of it, some quite expensive, was quite disappointing. May be your doctor knows how to help with this.

I'm sure there is other relevant stuff to consider and it's important you have an open discussion with your doctor.
I'm becoming more and more convinced that we all need to clear our system of parasites which may weaken our immune system. I'm not a doctor and don't know if that could help with viral loads. That's something I'm considering at present and going to try.
Hope your doctor can help.

I didnt think there was a cure yet for cfs and dont believe antivirals are promoted as such although a number of people say they have been cured, but many have made alot of improvements with antivirals, but this is also after testing has shown these viruses are reactivating in these people otherwise its a wild guess. Antivirals play a big part in many cfsers but not all and i dont think there is too many people that would say there is a magic bullet, i wouldnt be to quick to say antivirals dont help. Treating cfs takes treating it from as many angles as u can find dysfunctions, infections, immune defiencies, hormone dysfunction, leaky gut problems etc etc. Having high titres to HHV6 is definately something to go after as it can exacerbate and cause many symptoms of cfs.

cheers!!!

 

[jace]

Here we have to pay the first month 3000 euro and after that 1500 euro per month.

Those are really high prices for Valcyte, if it is the generic form. If you can get the prescription and the monitoring from KdeM, Valganciclovir (Valcyte generic, 450mg) is cheaper elsewhere. I've used this pharmacy for other things, I'm in the UK. http://www.internationaldrugmart.com/valcyte.shtml

 

[heapsreal]

This is the cheapest online valcyte that i have been able to find, prescription required http://www.totaldrugmart.com/drugsearch.asp?strString=Search&txtName=Valgan&submitted=yes
450mg x 40 $364.99. Before making a jump in improvement several months ago with famvir i pondered using valcyte at one tab a day with 250-500mg of famvir at night. I was looking at using a low dose for affordability, but after a full 12 months on famvir my viral load to ebv and cmv have dropped to normal levels so didnt persue this. Even this price for valcyte was pushing my financial limit.

cheers!!!

 

[Rita]

Do you know if Labolife has products for HHV6?...sure they have for EBV.They are homepatic products.
The difficult is to meet a doctor who knows this products.

 

[sianrecovery]

Hi Nabo

I am not at all expert in viral treatments, its an avenue I am only now starting to look at - having focussed first on mitochondrial function (via Dr Myhill, her website has her book free to download as a PDF, and I found it very helpful), parasites (with a nutritionalist - a work in progress) and clearing the system of heavy metals and toxins. I also use the Perrin techinique for lymphatic drainage. I am not cured, but I am now also not bed bound. It sounds like a very obvious thing to say, but when I was unable to move around much, what really helped was starting to move a little bit - even if it was just cycling my arms and legs in bed, and breathing more deeply. Drinking decent water and avoiding the trap of sugary carb rich food also really made a difference. I know you will have already thought of all this, my apologies. The less I moved, the worse I got - reading Clint Ober's Earthing book helped, as did Donna Eden's Energy Medicine, if you are open to the less evidence based stuff. Fiona Agombar (a recovered ME person) wrote a great book called Beat Fatigue with Yoga which also helped me to get moving again. And if nothing else, those things were cheap to do, within my power and gave me hope again. Good luck xxxx

 

[Daffodil]

antivirals are not a cure..you will relapse eventually after stopping them, i think. there is an underlying problem that is as yet unknown.

i havent researched this in a while so i could be wrong, but it was my understanding that generic valcyte is only available in india...does anyone make generic valcyte here?

in the USA the drug company provides the drug on a compassionate basis but i am not sure if that is the case in the UK because it is not in canada.

 

[Nabo]

Thanks for all the information.

I am now very tired, so cant read it all.

So i response later.

i found this site
http://www.medstoreinternational.com/buy-Valcyte.php

Does anyone know, if this is a good site? Can i trust this site?
This is so much cheaper then here in holland!

It is the right medicine?? They say generic

 

[Nabo]

somebody ?????

 

[heapsreal]

http://www.totaldrugmart.com/drugsea...&submitted=yes i mentioned earlier seems more legit as they require a script. I have had contact with them through emails but havent ordered any products through them. They seem just as well priced as medstoreinternational.
All i can say is that if i was going to use valcyte i would order from totaldrugmart, but i havent had much experience with them.

cheers!!!