Herpes meds - where to buy them, how much does it cost and which ones do i need?

Hi,

I am thinking of starting treatment for Herpes infection, which i will probably test for first, at least for CMV and HHV-6, but probably not bother for EBV as i know i have it from having Mono previously.

From what i have read if EBV only then valacyclovir (Valtrex) is the way to go. Is that right?
If with CMV or HHV-6 then valgancyclovir (Valcyte). Is that right?

I generally tollerate meds quite well.
Where can i buy these without a prescription? Im in the UK, so am guessing that i will have to buy them abroad on the net. I want it to be as cheap as possible, but i want to buy from a reliable source, where several people have bought from before and had improvement.

I hope you guys can advice me.
Many thanks

In the US these meds are obtained by prescription from doctor. I started this illness with Mono, I also have vaginal herpes outbreaks occasionally that are very painful. I thought a year ago that Valtrex was the way to go but it was not for me. I spent the entire year bedridden. Terribly ill. Didn't recognize it was the Valtrex making me so ill because I'm on so many meds. It is so expensive that when I became eligible for Medicare and they refused coverage I switched back to Acyclovir and am doing a lot better. I don't take as often as prescribed, I only take it every other day because I'm poor. Valtrex made me very ill and I don't know why. But it was not the answer I had hoped it would be.

Valcyte can be extremely dangerous and should NOT be taken without very frequent testing (approx monthly) for potentially lethal side effects. I understand the value of this medication -- my daughter was on it for 18mo and is now in remission, and I've been on it for almost 2yrs and have had substantial improvement. However, I would not take it without careful supervision of a knowledgeable physician. It is also extremely expensive. My dose, for example, costs $150 per day.

Valtrex is much safer, and if purchased as a generic, significantly less expensive. Dr Lerner prefers the Teva or Mylan brands as he has seen poor response in people using other generics.

Testing for HHV-6 (and possibly CMV also) is not very reliable for PWME. See HHV-6 Testing for Patients http://www.hhv-6foundation.org/patients/hhv-6-testing-for-patients.

You might have better luck trying one of the immune modulators first to see if it can help your body clear herpesvirus infections. I think that's Dr Klimas' approach. Since you're in the UK, you might consider seeing KDM in Brussels. I believe he does a lot of testing and prescribes immune modulators (among other things).

Thats good to know. I will need to read up more on this one if i go down this route. Femvir has been reccomended to me, and its alot cheaper. I think i may well give that a go first. I guess if that doesnt work, i can always move onto Valtrex or Valcyte later...

That is also very useful to know - thank you!

thanks for this too, thats a potential avenue for me to explore. I havent really explored this topic much as it seems complex, and my immune system seems to be working well, i never get ill, and it seems to me that my immune system is uprated. So my though so far (though i am not knowledgable on this and could be wrong) is that an immune modulator might just make things worse, putting even more strain on my system.

I've been using the Cipla generic for Valtrex which a doctor recommended for me (can't say his name in pubic). Started off with the script for the real valacyclovir and then switched to the generic due to cost.

I'd like to try Valctye and I have a doctor experienced with it but I simply cannot afford it even as a generic. Not tried Famir. Acylovir even as the branded product is not as effective as Valtrex for me.

HHV6, CMV and EBV tests in the past.

I'd like to do this all properly with regular tests and the real drugs but I cannot afford to do so.

Bought the Valtrex from Magicpharma originally. There is a seperate thread on pharmacies to buy internet drugs on this forum somewhere.

Imunovir has been good in keeping down the viral symptoms for me (swollen glands, sore throats etc)

Just been watching dr peterson's excellent videos filmed in Sweden recently. In one he shares that acyclovir is not effective against cmv and epstein Barr. Edit: actually Dr peterson said not acyclovi is not effective against cmv and ev. I've suddenly realised that ev may actually be enterovirus' and not epstein barr, sorry for the confusion... Edit: Duh, sorry re listened to the Peterson video and he said acyclovir does not work for cmv and eb, so presume eb is epstein barr....

Ukxmrv, I live in the uk too. Unless one is rich valcyte is just too expensive for us, I agree. So frustrating

Like you, I rarely get colds etc.. (have severe m.E) and also, like you, am not very knowledgeable about the immune dysfunction in M.E. From the little I've read, as we know many people with M.E seem to have an upregulated immune system. I think though that this doesn't mean we are dealing with all virus's etc well. I think one side of the immune system is upregulated, not the other. So immune modulators might balance the immune system and then help us deal with virus etc. As I said, my understanding on all of this is very basic, so I hope someone with more knowledge can explain it further to you...

Hi, all.

Raising the lysine to arginine ratio in the body may help against the entire herpes family of viruses. It certainly helps against herpes simplex type 1 (cold sores or fever blisters), and against herpes zoster (varicella zoster, causing chicken pox and shingles). I have received a couple of anecdotal reports that it helps against mononucleosis (glandular fever, Epstein-Barr virus). Supplementing lysine and lowering the intake of foods high in arginine (such as nuts and chocolate) will raise this ratio. Three grams per day of lysine is O.K. for most people. I haven't seen data for 10 grams per day over the long term, so would not recommend that. Higher doses could be hard on the liver or kidneys, because the body will have to get rid of the excess by converting it to urea. It's important to have enough B6 on board to metabolize the excess lysine. I recommend working with a physician if you try this approach, and I would be interested to hear of experience with the other herpes viruses.

I might mention that raising glutathione should also be effective against the whole herpes family, because they all contain glycoprotein B, and it cannot form its disulfide bonds if glutathione is at normal levels. Likewise, getting methylation status up may help too, since methylation may silence the expression of the viral genes. Both these are helped by the methylation protocols in most people who have ME/CFS.

Best regards,

Rich

I just bought, about a week ago, a powdered kilo of the stuff and have been taking about 1000mg a day spread over two or three doses. Ive just started increasing to 1500 a day, and will likely go to 2000mg before i decide whether to increase further or not.
I expect to have to give it some time before i see any improvement but its fairly inexpensive and as Rich points out, its apparently effective against Herpes.

I'll add that I suspect (I have no hard evidence) that one of the reasons my daughter and I had better luck and fewer side effects with Valcyte than many people do is that we did the Pall Protocol (which works as a methylation protocol, if I understand correctly) first. As expensive as antivirals are, it's probably worth getting anything less expensive to treat dealt with first, so the antiviral has the best chance of working.

If your body is not suppressing herpesviruses, then something is not right with your immune system (as I understand it, anyway). The immune system is very complex, so it's probably worth doing a some reading on ME and the immune system. I know I need to do a lot more studying, because I don't even begin to understand even the simplicities, much less the complexities, of Th shifts, Rnase-L, autoimmunity, NK cell function, etc, etc, etc.

Hi Rich,
I'm now in my twilight years(just managing to stay out of a wheelchair!) and a longterm ME/CFs/organophosphate poisoning sufferer...Thank you for all the valuable advice on these threads.I like nuts/chocolate and in recent times i have been eating same(cheating!)I know that sticking to a strict dairy free/sugar free/gluten free/low cabohydrate diet/yeast free diet helps me to get by.....I have EBV and cold sores(herpes)too...As far as i can recall i was deficient in Glutathione(Dr Myhill Tests) and her tests too show i have Mitochondrial problems(disease/damage?).There is a lot on the Methylation Cycle in these threads(Fredd/Yours)...I need to read more on that.I have B12 deficiency too(genetic?)/many other immune problems......and now i get 3 monthly injections(probably not enough)/pernicious anaemia.How cheaply can one do the Methylation Cycle(per week?)...I live in UK.Should one do the Lysine part for a time before they begin the Methylation Cycle to get the best results?

I have had success using famvir for cmv and a few others have had success using famvir for hhv6, so its potential a half way beat between valtrex and valcyte. It seems to be the forgotten antiviral.

cheers!!!

snow, you should not discount various herbs/plants as cheaper alternatives (and less side effects) that have shown to be effective against EBV. I suggest you do your own research as much is still unproven, but some that come to mind are graviola, milk thistle, andrographis, lemon balm, ginger, turmeric, astragulus, green tea, licorice, quercetin, cinnamon, selenium and many more. You can use those in combination with meds as well. cheers

Thanks mellster. I agree, herbs etc can be very good. Indeed, i am taking oregano oil and coconut oil (though ive given this a break cause its gross) and keep on meaning to get some milk thistle or olive leaf extract, as these are all reportedly good against herpes. But the main problem with these is how unproven they are. It makes it hard to know for sure if they work. But i figure both herbs and drugs are good, so plan to use both if i can.

I am also on a course of vitamins and minerals to help support my immune system and adrenals.

Sounds good - fyi I had the best results with graviola (front runner), andrographis (fresh brewed bitter tea is much better than the pills), oregano oil, lemon balm. Aside from that anything that boost immune function / nk cells such as LDN, ahcc, thymus protein, and graviola plus andrographis again. Also I agree with SOC, a nk cell test would be useful as the immune system can be upregulated in one part as it is deficient in another and most test on the lower side for nk cell (function), so boosting those is good. cheers

mellster, what brand of andrographis tea do u buy?

Thank you for this suggestion Rich.

I've been doing the specfic carbohydrate diet, then GAPS for a few years now and I probably rely a bit too much on nuts...for carbohydrate, not protein. Anyway, I ordered some lysine today so I'll make an effort to avoid nuts for a while (and I'll try hard to refuse all Christmas chocolates!) and I'll see how a lysine/arginine adjustment suits me.

Thanks again!

Anne.

Hi Rich,

Could you please advise where I can find the methylation protocols? Thanks for the information!

Cheers,
Cureminded

Hi, Cureminded.

You can find them in the detox and methylation forum, which is part of these Phoenix Rising forums. The reason I wrote methylation protocols (plural) is that there are several in use now. I have proposed one of them, the so-called Simplified Methylation Protocol (below). However, Freddd, who posts in Phoenix Rising forums also, recommends a somewhat different protocol, which works better for some people. There are also several others in use by various practitioners, in ME/CFS as well as in autism and in some other disorders. I don't think we are yet able to predict which will work better for a given person. The essence of these protocols is that they contain some form of folate (preferably methylfolate, but some use folinic acid) and high-dose B12, either taken sublingually or injected. Hydroxocobalamin works for about two-thirds of PWMEs, based on our clinical study, but some people need methylcobalamin.

Best regards,

Rich


March 30. 2011

SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE PARTIAL METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROME—March 30, 2011 Revision
Rich Van Konynenburg. Ph.D.
(Based on the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])

SUPPLEMENTS

1. General Vitamin Neurological Health Formula [2]: Start with ¼ tablet and increase dosage as tolerated to 2 tablets daily
2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
3. MethylMate B [4]: 3 drops under the tongue daily
4. Folinic acid [5]: ¼ capsule daily
5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

All these supplements can be obtained from http://www.holisticheal.com.
The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
Phosphatidyl serine can lower cortisol levels. Patients who already have low evening cortisol levels may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
For those allergic to soy, lecithin from other sources is available.
GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

[1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon.
[2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
[4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
[5] Folinic acid is 5-formyltetrahydrofolate. ¼ capsule is a dosage of 200 mcg.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
[7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.