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How long to wait till u try anti-virals?

Tella

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Any person who doesn't live on a desert island has a virus present in them in some form. For example once you catch a herpesvirus, it never goes away from the body. More than 90% of the population carry HHV-6, a great majority have been infected with EBV, HSV1/2 are common, CMV, enteroviruses, etc. as well. The question is are these viruses doing any harm, in other words, are they active in some manner in ME/CFS patients? Here we don't have a clear answer I'm afraid.
Yes, I know they stay mostly dormant in the body. But for cfs patients, some viruses stay active or get activated often. Mainly the ebv
 

Tella

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What test was that, can you share?
The one Dr Myhill recommends, it’s on her website. I think a few labs do it but I wouldn’t spend money on it. Indeed they say it’s not diagnostic but just shows if your cells are bad at distributing/keeping energy...which I can see myself without any test!
 

Tella

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This reminded me of when, I had to go on the diabetic diet because I was pregnant and having Gestational Diabetes. So they tell you , you cant' have most of the things your used to eating.

So since its your baby, you just do it. You just make the adjustment required.

but then: when its just ourselves, well then it fells MUCH MUCH harder.

But I did it (stopped eating those things) and mostly, I don't eat them.

(55 years of this and never taken anti-virals).
Did the diet help with your M.E. or anyone else u know on the diet? No grains at all?
 

JES

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That’s why I’m looking for an online doc. Otherwise there are prescription free online pharmacies
Actually pharmacies in my country have begun to sell Valtrex over-the-counter, so it seems to indicate a small dosage like 500 mg would be unlikely to do much harm. On the Lerner protocol dosage, you would need to have liver values monitored. Anyway, I don't want to give any medical advice here, but as I said, you are unlikely to find any doctor in UK monitoring antiviral use.

There are some other things that you may try first if your main goal is to treat EBV. Vitamin C (liposomal or preferably IV) have been shown to decrease EBV antibody titers (source), which is really interesting. Monolaurin has quite a bit of anecdotal evidence. Andrographis is a third one that is commonly used.
 
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Did the diet help with your M.E. or anyone else u know on the diet? No grains at all?
The diet changes are probably focused more on intestinal digestive issues, which most ME people at times have to deal with. ...and the blood sugar insulin isssue..

I've made considerable progress on the GUT. Mine is exhibiting far fewer problems. Its calmed down alot. I was dealing with IBS-d mostly. I take Chinese traditional herbs specifically for my gut. I do probiotics occasionally and not recently.

I've frankly been surprised that I fixed my gut THIS MUCH and its helped my overall ME not very much. This surprised me. I must be getting far more nutrients in than I was before, so why do I feel lousier?
 

Tella

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Actually pharmacies in my country have begun to sell Valtrex over-the-counter, so it seems to indicate a small dosage like 500 mg would be unlikely to do much harm. On the Lerner protocol dosage, you would need to have liver values monitored. Anyway, I don't want to give any medical advice here, but as I said, you are unlikely to find any doctor in UK monitoring antiviral use.

There are some other things that you may try first if your main goal is to treat EBV. Vitamin C (liposomal or preferably IV) have been shown to decrease EBV antibody titers (source), which is really interesting. Monolaurin has quite a bit of anecdotal evidence. Andrographis is a third one that is commonly used.
Thank you! Yes, it’s sold in many countries without prescription and in some pharmacies online too. I’m working with a holistic doc so I’m on vitamins but she said she can prescribe antivirals if needed. With some search u can find a doc who will prescribe them
 

Tella

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The diet changes are probably focused more on intestinal digestive issues, which most ME people at times have to deal with. ...and the blood sugar insulin isssue..

I've made considerable progress on the GUT. Mine is exhibiting far fewer problems. Its calmed down alot. I was dealing with IBS-d mostly. I take Chinese traditional herbs specifically for my gut. I do probiotics occasionally and not recently.

I've frankly been surprised that I fixed my gut THIS MUCH and its helped my overall ME not very much. This surprised me. I must be getting far more nutrients in than I was before, so why do I feel lousier?
That’s good for your gut and overall health. Well done. But your ME may be stemming from somewhere else then
 

Haley

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I started on valtrex a year and a half after initially becoming sick (long time for a diagnosis and then researching treatments on PR), so I wouldn't say it's too late to try. It isn't a cure for me but definitly lessens a lot of symptoms.

I did have a lot of testing beforehand for various viruses and infections etc, and the only thing that showed up was very high levels of EBV. I figured it was worth trying the valtrex.

Again, what works for one person may not work for another, and educate yourself on the risks involved. It's then your choice as to what to do.
 

nyanko_the_sane

It is a cats life for me.
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I can't say this enough, don't wait get on antivirals now! Any doctor can prescribe antivirals, if yours doesn't find one that will. A number of people follow the natural approach:
  1. Monolauren: 1800 mg twice daily
  2. Olive Leaf: 1000-1500 mg twice daily
  3. L-Lysine: 1000-1500 mg twice daily
  4. Cat’s Claw tincture: 30-60 drops twice daily
 

Tella

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I started on valtrex a year and a half after initially becoming sick (long time for a diagnosis and then researching treatments on PR), so I wouldn't say it's too late to try. It isn't a cure for me but definitly lessens a lot of symptoms.

I did have a lot of testing beforehand for various viruses and infections etc, and the only thing that showed up was very high levels of EBV. I figured it was worth trying the valtrex.

Again, what works for one person may not work for another, and educate yourself on the risks involved. It's then your choice as to what to do.
If u tested positive for any bacterial infections would u treat them first? Which symptoms are alleviated for u?
 

Tella

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I can't say this enough, don't wait get on antivirals now! Any doctor can prescribe antivirals, if yours doesn't find one that will. A number of people follow the natural approach:
  1. Monolauren: 1800 mg twice daily
  2. Olive Leaf: 1000-1500 mg twice daily
  3. L-Lysine: 1000-1500 mg twice daily
  4. Cat’s Claw tincture: 30-60 drops twice daily
Have u tried antivirals and did they help?
 
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@katarina

In many countries AVs like Valtrex are available without prescription. Many are fairly safe, but for Valcyte you should have regular blood counts done.
correct me if I’m wrong, but I think they’re sold over the counter for short term use? Like for an acute HSV 1 or 2 outbreak. I don’t think it’d be wise to take them long term without a doctor monitoring you
 

Haley

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If u tested positive for any bacterial infections would u treat them first? Which symptoms are alleviated for u?
I can't comment on which to treat first as it was never an issue for me.

The valtrex helps me with the swollen glands, flu like feeling, and fatigue and brain fog to an extent. It's not a cure for me, but helps keep me functional.
 

Tella

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I can't comment on which to treat first as it was never an issue for me.

The valtrex helps me with the swollen glands, flu like feeling, and fatigue and brain fog to an extent. It's not a cure for me, but helps keep me functional.
Are u planning to take them long term and would u say it was worth taking them
 

Haley

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Location
NSW Australia
Are u planning to take them long term and would u say it was worth taking them
I've been on them for a out 4 years now. I've tried stopping them several times but always had an upswing in symptoms so restarted. Planning to try another stop soon to see what happens.
 

Tella

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I've been on them for a out 4 years now. I've tried stopping them several times but always had an upswing in symptoms so restarted. Planning to try another stop soon to see what happens.
Do u get side effects or have damaged any organs? I’m scared of any damage.