My experience with Valtrex

[glenp]

I just saw this thread - thank you for updating! There should be so much more interest after Cheneys abstract. I am happy that it is really helping you Mike

Has anyone gotten headaches from valtrex. I have been taking minocycline for a few months and it has reduced my migraines by about 75%. I just started Valtex 500mg twice a day, by third day could only keep the one down (migraines and throwing up) , so only took it for 4 days. Has anyone had this? Mike does your dad know if this head pain side affect would go away?

COST - There is a valtrex Patient assist programme. It provides brand name VALTREX at no additional cost over generic valcyclovir. The number I have is 1-800-461-6579, although I have not called that number. It may only be the number for Canadian patients. GlaxoSmithKline.

glen

 

[heapsreal]

good on ya mate, these updates help alot of people and gives them hope of improving too.

cheers!!!

 

[mikipe2]

I just saw this thread - thank you for updating! There should be so much more interest after Cheneys abstract. I am happy that it is really helping you Mike

Has anyone gotten headaches from valtrex. I have been taking minocycline for a few months and it has reduced my migraines by about 75%. I just started Valtex 500mg twice a day, by third day could only keep the one down (migraines and throwing up) , so only took it for 4 days. Has anyone had this? Mike does your dad know if this head pain side affect would go away?

Thanks for your comments glen (& heapsreal),

I've been really lucky with headaches, I don't really get them (with Valtrex or CFS) unless I've been particularly physical and have sore, recovering muscles too. I'm so sorry that you couldn't tolerate Valtrex, that sounds awful. I'm not sure that my Dad would know that, he's not really up on CFS, and has only been hearing about drug therapies from me. I do know that my minimal-moderate nausea cleared up once my body was used to each dosage level, so maybe yours would too, but obviously I'm only speculating.

Which Cheney abstract are you referring to? Is it to do with Valtrex and/or antivirals?

 

[glenp]

Thanks for your comments glen (& heapsreal),


Which Cheney abstract are you referring to? Is it to do with Valtrex and/or antivirals?

http://www.treatmentcenterforcfs.co...e-on-the-management-of-glandular-fever-IM.pdf

 

[mikipe2]

http://www.treatmentcenterforcfs.co...e-on-the-management-of-glandular-fever-IM.pdf

Wow, thanks for the link! I missed this one.

It's interesting that he said "Therefore, EBV is causally involved in 81% of cases of CFS" in the first paragraph. It seems likely to me that XMRV/MLVs cause immune deficiencies and/or other problems, but that you don't actually have CFS until you get EBV/CMV/HHV-6, so maybe that's what he means by 'causally involved', that EBV/CMV/HHV-6 is a co-requisite for CFS.

 

[ukxmrv]

I'm still doing OK with Valtrex. No side effects that I have noticed. The viral symptoms are down and have been for a while.

 

[Live And Let Die]

Just got my perscription for Valtrex and the cost is amazing. I was perscribed 500mg 3 pills, 4 times per day. Does anyone have good experience with an online Canadian pharmacy?

A months worth here is $2000 for the generic and I see sites selling the same thing for $500 or less.

 

[heapsreal]

can i give u a few tips in reguards to making av's economical, there a drug called probenecide which is used for gout but also used to increased the blood levels and half lives of antibiotics and antivirals, but it can do the same to other drugs so have to watch out for this, not all drugs are effected by this. So using probenecide u theoretically can use a lower dose which can save u money, probenecide is quite cheap. In australia famvir worksout cheaper(500mgx30 $195, chemist warehouse) and also has a broader range of effect eg possibly against cmv and hhv6. The higher strength tablets workout more economical, i use 500mg tabs, 1/2 tab in morn and the same at night and have had good effect from this, i know dr lerner using much higher doses but im not sure if its necessary, but can also use probenecide for this as well. I did use valtrex from an internet pharmacy, but with limited success, but think this was due to valtrex not having much affect on cmv, http://www.4rx.com/online-pharmacy/categories/herpes/generic-valacyclovir-valtrex.html , these are the guys i used, have used other products with them that have been good, delivery time can take awhile, 4 weeks or so, my advice is to buy something cheap from them then all orders after that u get 10% discount or 20% more pills. See how that go's, need anymore info let me know, give it 3 months before u make a judgement on it though, good luck.

cheers!!!

 

[mikipe2]

Hi Nico's Dad,

I've used bigmountaindrugs dot com, and I'm not sure how much it means, but I chose it because it was one that pharmacychecker.com gave it's approval to. I've continued to see improvement after switching from brand name Valtrex to generic from bigmountaindrugs, so I feel assured that they are genuine pills.

There's no doubt that they are expensive. I found that wholesale cost for brand name (GSK) Valtrex 4g/day in Australia was a bit over AUD$1000 (Australian Dollars) a month, however bigmountain drugs is more like AUD$230-250 a month depending on US$ exchange rates. It sounds like you've been prescribed a slightly higher dose than me, keep in mind that the 1g pills are usually cheaper than 2x500mg pills, and that buying in bulk online is cheaper too.

I definitely agree that you should give it 3-4 months before judging whether it's working or not. That's how long it took me to see noticable/significant improvement. I'm assuming that you've tested for EBV/CMV/HHV-6, Valtrex is supposedly effective against a chronically active EBV infection, but not so much against CMV and HHV-6 and other co-infections.

Good luck!
I hope you are able to see some improvement!
Mike.

 

[mikipe2]

8 Months

Still doing well. I’ve been avoiding heavier cardio exercise, but have been able to go for a light ~15 minute walk everyday with really no issues at all. I’ve also been doing light weights without too much trouble (a little bit run down the next day still).

One brand new development is that orthostatic intolerance has improved dramatically. I haven’t pushed the boundaries to see how long I can stand for, but certainly short periods of standing don’t bother me anymore!

 

[heapsreal]

Thats good mate, being active is definately a step in the right direction.
I have put an order in with bigmountaindrugs for my famvir, definately a good price.

Whats your future plan with valtrex? Will u take a break from them and see how you go or continue on with them, maybe at lower dose. I will continue as my previous mini breaks have seen increase in symptoms but if i can get my lymphocyte sub sets to normal i might try a period off them, i have yet to get my lymphocytes into normal range although close.

cheers!!!

 

[mikipe2]

Thats good mate, being active is definately a step in the right direction.
I have put an order in with bigmountaindrugs for my famvir, definately a good price.

Whats your future plan with valtrex? Will u take a break from them and see how you go or continue on with them, maybe at lower dose. I will continue as my previous mini breaks have seen increase in symptoms but if i can get my lymphocyte sub sets to normal i might try a period off them, i have yet to get my lymphocytes into normal range although close.

cheers!!!

Hi heapsreal,

My original plan was 12 months, but I think the 'responders' in one of Dr Lerner's latest publications were on them for an average of 2.5 years.

I don't know though. I'm expecting my improvement will probably plateau at some point (bit of a sad thought, although I'm one of the lucky ones for Valtrex to even be working!), so I'll have a tough decision to make then. I'd probably switch to a maintenance dose rather than going off them, but I think I'd still be reluctant to even do that considering the improvement I've had so far, they're obviously doing something good for me!

I'm also very lucky in that I can afford the generics, even long-term, without too much trouble (brand name Valtrex is a completely different story), so there's no huge financial pressure for me to do without them.

But for now, as long as I keep improving, I'll keep taking them.

Cheers
Mike.

 

[mikipe2]

9 Months

Nothing much to report, about the same as at 8 months. Hopefully this is not the beginning of the dreaded plateau!

 

[Vojta]

Thanks for updating Mike. I hope it's not the plateau and you will be improving Today I found out the custom office stopped my Valtrex package from 4rx.com and they will send it back and there is no chance to import Rx drugs from online (out of EU) pharamacies to the Czech Republic now I'm begging my immunologist for Valtrex prescription. I gave him Lerner's articles but he's little bit sceptical about it.

I have positive all EBV antigens (VCA-IgM, VCA-IgG, EBNA-IgG, EA-D IgG) for a year and all doctors ignore these results. Since I'm negative for CMV and other infections I think that Valtrex is potential treatment for me but it's hopeless because nobody is interested in possible CFS treatments and new research. Maybe I will have to go abroad for proper treatment.

 

[heapsreal]

Hi mike,
yes plateaus happen, maybe need to investigate something to strengthen your immune system as its probably the reason why ebv reactivated, but stick with the valtrex.

cheers!!!

9 Months

Nothing much to report, about the same as at 8 months. Hopefully this is not the beginning of the dreaded plateau!

 

[heapsreal]

hi vojta,
If u live in Czech are u able to get cycloferon? Its said to be common in eastern parts of europe. you might find this will help u with ebv as well as it helps turn on the immune system. Herpes virus have an ability to avoid the immune system by turning down our production of interferon which is our natural antiviral protection. cycloferon is an interferon inducer and can help stimulate our production of interferon which has antiviral properties and helps strengthen our natural killer cells as well as anti-inflammatory effects against viral cytokines.

cheers!!!

Thanks for updating Mike. I hope it's not the plateau and you will be improving Today I found out the custom office stopped my Valtrex package from 4rx.com and they will send it back and there is no chance to import Rx drugs from online (out of EU) pharamacies to the Czech Republic now I'm begging my immunologist for Valtrex prescription. I gave him Lerner's articles but he's little bit sceptical about it.

I have positive all EBV antigens (VCA-IgM, VCA-IgG, EBNA-IgG, EA-D IgG) for a year and all doctors ignore these results. Since I'm negative for CMV and other infections I think that Valtrex is potential treatment for me but it's hopeless because nobody is interested in possible CFS treatments and new research. Maybe I will have to go abroad for proper treatment.

 

[mikipe2]

I'm so sorry to hear all that Vojta .

Maybe it's worth trying to find a different doctor who will prescribe Valtrex for you. Probably a hassle, but could potentially pay off. Do you know of any doctors who specialise in CFS in the Czech Republic?

 

[Vojta]

hi vojta,
If u live in Czech are u able to get cycloferon? Its said to be common in eastern parts of europe. you might find this will help u with ebv as well as it helps turn on the immune system. Herpes virus have an ability to avoid the immune system by turning down our production of interferon which is our natural antiviral protection. cycloferon is an interferon inducer and can help stimulate our production of interferon which has antiviral properties and helps strengthen our natural killer cells as well as anti-inflammatory effects against viral cytokines.

Hi heapsreal, I read about cycloferon in another thread and it looks very promising. Unfortunaltely cycloferon is not in czech pharmacies. Since we are in the EU our drugs are pretty same as in the other EU countries. I would have to travel far to east to Ukraine or Russia to get it. But in these countries drugs are usually sold without prescription so I wouldn't have the same problem as here. In the CZ I need prescription for everything but no doctor is willing to try treatments which are common in west countries.

Maybe it's worth trying to find a different doctor who will prescribe Valtrex for you. Probably a hassle, but could potentially pay off. Do you know of any doctors who specialise in CFS in the Czech Republic?

I asked again my doctor for valtrex by email. If he refuse then I'll try other doctors but this one is known as the best and openminded in the CZ . In general most doctors are pretty lame here if person suffer from uncommon disease. They don't believe even that CFS exists. There are only few people who know that it's rather complicated health condition. It's difficult also for people who have chronic boreliosis, chlamydia or mycoplasma to find doctor who will treat them.

I was hospitalized in neurological ward (because of lumbal punction) yor a week few monts ago and it was absolutely ridiculous. When they found nothing in common test they tried to prove that I was faking my subfebrilia by heating thermometer When they failed then they send psychologist to test me (funny is I'm studying psychology for 4 years at University). In the end they let me go without any conclusion. After two months when I had new control results from immunologist (who found hyperthyreosis, new for me), I visited neurologist in that hospital and she told me I had had thyroid hormones through the roof when I was hospitalized (and low Cu). They JUST forgot to check all my lab results!!!

 

[mikipe2]

10 Months

Still seem to be improving. I’ve been able to go for longer slow-pace walks without paying for it the next day, and while I’m still clearly prone to relapses/crashes, I’m able to recover from them in 2-3 mostly couch/bed days, rather than 2-7 full bed days.

 

[heapsreal]

good to hear from u mike, glad to see your still improving, i think i have said this before that av's arent a cure but help increase our ability to function, which it seems to have with u. Your experience seems similar to my experience in that still prone to 'crashes' but recover quicker from them. U maybe need to look into things that help improve your immune function.

cheers!!!