How long to wait till u try anti-virals?

[Tella]

Hi, this is my first year of illness (as far as I know) I’ve been severely sick since this summer and currently tweaking the diet (any tips how to avoid sugar and grains? I can’t have dairy, eggs, nuts either, so diet is limited) and taking supplements. My doc says do that for maybe 4-5 months and then maaaybe we will try anti-vitals. As she wants to do the holistic way first. Which I agree with...But cos I’ve read many success stories with anti-virals I’m thinking, aren’t I making myself feel worse by waiting and letting the viruses attack me more? I can find another doc who will prescribe anti-virals or buy them in a ‘free’ pharmacy (they sell them freely in many countries!). What’s your advice? Many thanks

 

[john66]

The first year is the best time for AV's according to one of my health care providers

 

[Tella]

The first year is the best time for AV's according to one of my health care providers

That’s what I’ve read. Can anyone confirm with links? They’re hard on your body tho so I guess that’s why my holistic doc tries to do the natural stuff first? As they can really damage your kidney and liver etc...confused now. How long shall I do supplements before trying AVs?

 

[katarina]

My specialist told me the first year is the best time. However I think valcyte made me irreparably worse, so take that with a grain of salt. They aren’t a cure-all and can have very serious long-term health risks

 

[Tammy]

If I knew back then (March of 96) what I know now, there is no doubt about it.................I would have started anti-virals right away. If you are worried about the prescription anti-virals..............there are natural anti-virals as an option. They have helped me the last few years. Cats Claw, Licorice root, L-lysine, Olive leaf...........just to name a few. (I usually took 2-3 different ones at one time). I had to start out with low dosages..........as even the natural anti-virals can be strong! When I worked up in dosage..........I sometimes went above what the bottle recommended. For example............with L-lysine.........I took up to 4,000-6,000 mgs per day (sometimes even higher).

 

[Tella]

If I knew back then (March of 96) what I know now, there is no doubt about it.................I would have started anti-virals right away. If you are worried about the prescription anti-virals..............there are natural anti-virals as an option. They have helped me the last few years. Cats Claw, Licorice root, L-lysine, Olive leaf...........just to name a few. (I usually took 2-3 different ones at one time). I had to start out with low dosages..........as even the natural anti-virals can be strong! When I worked up in dosage..........I sometimes went above what the bottle recommended. For example............with L-lysine.........I took up to 4,000-6,000 mgs per day (sometimes even higher).

Sometimes they work even when u start late. Are u thinking of trying any? I doubt the natural ones will have the same impact on me.

 

[Tella]

My specialist told me the first year is the best time. However I think valcyte made me irreparably worse, so take that with a grain of salt. They aren’t a cure-all and can have very serious long-term health risks

Any particular timeline? ASAP or just in the first year?

 

[jaybee00]

You should start ASAP and lose the “holistic” doctor ASAP as well.

 

[katarina]

Any particular timeline? ASAP or just in the first year?

You need to rule out other causes though first which takes some time typically. Have you been tested for an active mono infection?

 

[katarina]

I can find another doc who will prescribe anti-virals or buy them in a ‘free’ pharmacy (they sell them freely in many countries!). What’s your advice? Many thanks

Also about buying them without a prescription, that is a HORRIBLE idea as this is not medication to be taken lightly. Typically you have to be closely monitored with monthly blood tests to make sure that you’re not having liver failure. These are very serious drugs and they can have long term ramifications.

 

[jaybee00]

@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.

 

[Tella]

You should start ASAP and lose the “holistic” doctor ASAP as well.

Well the doc seems ok apart from not willing to give me antivirals right now and me spending money on some blood tests (but it was my own choice I guess). I agree with her that it’s a whole picture that needs to be looked at and targeted:nutrition, sleep, stress, deficiencies and then viruses. She wants me to try the diet and vitamins for a few months and then she may prescribe the pills

 

[Tella]

Also about buying them without a prescription, that is a HORRIBLE idea as this is not medication to be taken lightly. Typically you have to be closely monitored with monthly blood tests to make sure that you’re not having liver failure. These are very serious drugs and they can have long term ramifications.

I know it has some risks (although from what I’ve read Valtrex is fairly safe), that’s why I’m looking for a doc who can prescribe and monitor me! But can’t find anyone it’s frustrating! I’m wasting time, that’s why I wanna buy the pills and do the liver/kidney blood tests privately and ask the gp or the holistic doc to just check them for me.

I’ve been tested for ebv in June when I just got sick and I had the active and a past infection (igg n igm), please don’t tell me I lost my chance to take the antivirals back in June? I fear the virus had obviously spread more since June in my body and I could have attacked it with pills months ago?
I will probably get tested for bacterial infections first as that’s what Lerner recommends. And then should I get tested for ebv again? If it’s not a current infection anymore, should I not take antivirals?? Confused. Wish docs were willing to help!

 

[jaybee00]

Mechanism of AV not related to killing viruses— search for Naviaux.

Also Ron Davis has found no excess or unusual viral activity in patients— you can search for this also.

 

[Tella]

Mechanism of AV not related to killing viruses— search for Naviaux.

Also Ron Davis has found no excess or unusual viral activity in patients— you can search for this also.

But most people with ME seem to have an identifiable virus present in them?

 

[Tella]

Mechanism of AV not related to killing viruses— search for Naviaux.

Also Ron Davis has found no excess or unusual viral activity in patients— you can search for this also.

Also I’ve had the mitochondria test done which showed that I do have cfs etc...but I don’t see any point in this test as I know my cells don’t work well without it. The trigger for most people seems to be a virus tho. Mainly ebv

 

[JES]

But most people with ME seem to have an identifiable virus present in them?

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.

 

[Rufous McKinney]

currently tweaking the diet (any tips how to avoid sugar and grains?

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).

 

[Rufous McKinney]

I’ve had the mitochondria test done which showed that I do have cfs

What test was that, can you share?

 

[Rufous McKinney]

Well the doc seems ok apart from not willing to give me antivirals right now

My doctor told me: I had to go to Stanford to get antivirals.