Antivirals Side Effects and total time?

[frozenborderline]

I've been on valtrex for about four months and have been consistently getting worse. Also I have side effects that I think are likely to be from the valtrex like I get dizzy each morning after I take it, 30min-1hr.

My doctor wants to stay on valtrex for two more months, and says that 6 months are necessary to see if it's working. But I'm getting so much worse that I can't even travel to see the doctor anymore, which is counterproductive.

And i've heard other people say that only 3 months are necessary to see if it's working. I also think that the labs that she based the diagnosis of active infections on are idiosyncratic (most readings would say that they are not active infections, IgM positive only but not IgG positive??).

I don't want to lose this doctor but I've been getting so much worse that I'm really pretty set against staying on the antivirals. What do I do?

 

[Hip]

My doctor wants to stay on valtrex for two more months, and says that 6 months are necessary to see if it's working. But I'm getting so much worse that I can't even travel to see the doctor anymore, which is counterproductive

Have you considered switching to Famvir at the same dosage? Famvir is usually much better tolerated than Valtrex, but has about the same potency. When Dr Lerner treated patients with Valtrex, he would substitute with Famvir at the same dosage if the patient experienced side effects. Famvir is more expensive, but if insurance is paying that should not be an issue.

 

[frozenborderline]

Have you considered switching to Famvir at the same dosage? Famvir is usually much better tolerated than Valtrex, but has about the same potency. When Dr Lerner treated patients with Valtrex, he would substitute with Famvir at the same dosage if the patient experienced side effects. Famvir is more expensive, but if insurance is paying that should not be an issue.

I haven't considered that, yet. But my doctor was surprisingly amenable to my concerns when we talked and said that, since it can take two years to get the proper effects, we can try other interventions and take a break from the antivirals. She thinks that with my low IgG levels IVIG could make a difference in fighting the infections.

I will bring up famvir to her, and also oxymatrine.

 

[frozenborderline]

Btw I've been looking at herbal antivirals. Normally I would dismiss herbal substances out of hand in terms of antimicrobial activity but it seems like pharmaceutical antivirals often have not a great track record, maybe viruses are harder to target than bacteria? I don't understand the mechanims.

Nevertheless, it seems like there are some herbal antiviral substances that actually have a pretty solid case for use--emodin, monolaurin, and oxymatrine are the three that seem backed up by good evidence.

 

[Hip]

I haven't considered that, yet. But my doctor was surprisingly amenable to my concerns when we talked and said that, since it can take two years to get the proper effects, we can try other interventions and take a break from the antivirals.

Dr Lerner said that is takes around 3.5 months on for the benefits to begin to appear. You can see from the third table in this post the slow gradual improvements that appear on Valtrex, as measured by Lerner's Energy Index Point Score scale.

I've been looking at herbal antivirals. Normally I would dismiss herbal substances out of hand in terms of antimicrobial activity but it seems like pharmaceutical antivirals often have not a great track record, maybe viruses are harder to target than bacteria? I don't understand the mechanims.

There are lots of studies showing that herbal and natural compound antivirals work in vitro, when tested in a cell line. However, often the concentrations used in vitro cannot be obtained in vivo when the herb is taken orally, so in practice these herbal antivirals will often show little effect when taken orally.

 

[frozenborderline]

Dr Lerner said that is takes around 3.5 months on for the benefits to begin to appear. You can see from the third table in this post the slow gradual improvements that appear on Valtrex, as measured by Lerner's Energy Index Point Score scale.





There are lots of studies showing that herbal and natural compound antivirals work in vitro, when tested in a cell line. However, often the concentrations used in vitro cannot be obtained in vivo when the herb is taken orally, so in practice these herbal antivirals will often show little effect when taken orally.

https://www.ncbi.nlm.nih.gov/pubmed/24071990

This study has both in vivo and in vitro benefits, and the in vivo was with oral doses of emodin, not even IV. need to get the full text though to take a closer look. Curious about emodin, like I mentioned earlier, because it is a purinergic antagonist as well as apparently helping with gut health AND having antiviral activity. I received my lapodin today (beta-lapachone + emodin). Unfortunately couldn't find a pure emodin product, but between this and trying cascara, I'll test out a couple sources.

 

[Hip]

This study has both in vivo and in vitro benefits,

Yes, if the study shows good in vivo effects, that's OK; but if the study is only in vitro, that alone does not provide evidence of in vivo efficacy.

 

[alkt]

do you think the dizziness you experience might be caused by dehydration some drugs seem to dehydrate you very quickly. I had such a bad reaction to gastro griffin last year the moment I stood up after drinking just a third of the dose mixed in a pint of water the dizziness hit hard and I had to sit down immediately . I mention this as just one possible reason for your symptom.

 

[BadBadBear]

Dr Lerner said that is takes around 3.5 months on for the benefits to begin to appear. You can see from the third table in this post the slow gradual improvements that appear on Valtrex, as measured by Lerner's Energy Index Point Score scale.

I hope 3.5 months is the average. I am at 6 months, and have had lots of ups and downs. I have thought I was hitting the point of feeling better (on Famvir), only to have mini relapses to struggle out of (thankfully I have not been hit with major relapses like I had prior to being on Famvir).

Last week I felt like heck, this week I feel better with some days that were 'good' and some that were 'not very good', and one that was 'great'. I cannot yet predict how the next day will be, based on whether the current day was good or bad.

 

[frozenborderline]

I think it would be interesting to go into more detail on Naviaux's warnings about antivirals and antibiotics, which he believes can be damaging to mitochondria. What theory is this based on/what studies if any?

 

[BadBadBear]

I think it would be interesting to go into more detail on Naviaux's warnings about antivirals and antibiotics, which he believes can be damaging to mitochondria. What theory is this based on/what studies if any?

But what is the choice, if one's system is truly overwhelmed by viruses and declining? I was afraid to hold off on taking AV's and let myself get any sicker as I was in a major state of living decay.

 

[frozenborderline]

But what is the choice, if one's system is truly overwhelmed by viruses and declining? I was afraid to hold off on taking AV's and let myself get any sicker as I was in a major state of living decay.

Well there are a few things going on, in my case, and the general questions I think could be useful for other people. One of the questions is "how effective are these antivirals, in general or for these specific viruses". in my case they seem not so effective in studies for most of the viruses I have.

Another question is, "many people have these viral infections in the course of their life, without incident or even feeling sick, why am I sick?" sickness is more than a particular infection, it is a disease state involving metabolism, immunity, etc.

In my case, I have been tested and had low IgG levels across the board. This points to the idea that maybe an intervention like IVIG could help me fight viral infections. Given the spotty track record of antivirals, it might even work better, just boosting my immune system.

But I mean, if antivirals are working for you and not making you worse, there's no reason to go off I guess. In my case, I have been steadily declining while on antivirals. There's no guarantee it's causative but I think it's worth taking a break, given that they can be toxic.

I think when there is a CFS cure it will have to do with metabolism/immunity, etc... I think a healthy metabolism can fight off a lot of infections, the problem is cumulative stress combined with the infections, and what Naviaux calls the "cell danger response". there are all these metabolic traps that are like feedback loops that one can get stuck in and I think pepole have a barrage of infections and nothing to fix these metabolic/immune problems

 

[frozenborderline]

Well there are a few things going on, in my case, and the general questions I think could be useful for other people. One of the questions is "how effective are these antivirals, in general or for these specific viruses". in my case they seem not so effective in studies for most of the viruses I have.

Another question is, "many people have these viral infections in the course of their life, without incident or even feeling sick, why am I sick?" sickness is more than a particular infection, it is a disease state involving metabolism, immunity, etc.

In my case, I have been tested and had low IgG levels across the board. This points to the idea that maybe an intervention like IVIG could help me fight viral infections. Given the spotty track record of antivirals, it might even work better, just boosting my immune system.

But I mean, if antivirals are working for you and not making you worse, there's no reason to go off I guess. In my case, I have been steadily declining while on antivirals. There's no guarantee it's causative but I think it's worth taking a break, given that they can be toxic.

I think when there is a CFS cure it will have to do with metabolism/immunity, etc... I think a healthy metabolism can fight off a lot of infections, the problem is cumulative stress combined with the infections, and what Naviaux calls the "cell danger response". there are all these metabolic traps that are like feedback loops that one can get stuck in and I think pepole have a barrage of infections and nothing to fix these metabolic/immune problems

I don't plan on just doing nothing about the infections, I plan on using a break from antivirals to treat some other thigns and try other interventions, and I"m going to try herbal antivirals during that time period

 

[BadBadBear]

@debored13 I agree with most of what you said, but I think you are on a more toxic AV than I am on, and one that seems to often entail more side effects, so the question is whether the side effects are getting to you, or if the AV is not working. It will be difficult to discern without testing a different AV.

I am planning to reduce my AV dose to the minimum I need once I stop having flare ups and relapses. I had hoped I'd be able to reduce my dose over the summer as I don't usually get sick in the summer, but for now I still need the full dose.

I am on 1g, I had hoped to go to 750 mg and then possibly down to 500 mg. I had almost ran out of meds this past weekend (pharmacy was having multiple issues!) and cut down to 500 mg per day to conserve tablets and started to be symptomatic. So I believe meds are helping me, and dose cannot be cut down yet, and taking a break at this point would cause a major relapse.

Since I'm not having gnarly heart palps or air hunger this year, I really don't want to take chances.

Not trying to speak for you at all, just for myself.

 

[BadBadBear]

Adding, I had tried herbals, diet, etc. for a few years prior to AV's under the care of my integrative MD and got sicker and sicker, so for me, I feel that is a dead end (one that makes me feel dead, anyway).

 

[TenuousGrip]

In my case, I have been tested and had low IgG levels across the board. This points to the idea that maybe an intervention like IVIG could help me fight viral infections. Given the spotty track record of antivirals, it might even work better, just boosting my immune system.

I'm treated by Jose Montoya's clinic at Stanford. They report a high percentage of significant improvement in patients with co-morbid IgG subclass deficiency and ME/CFS.

If it were me ? I might drop everything else and try the IVIG route ... if your insurance will cover it.

JMHO. YMMV ;-)

 

[frozenborderline]

@debored13 I agree with most of what you said, but I think you are on a more toxic AV than I am on, and one that seems to often entail more side effects, so the question is whether the side effects are getting to you, or if the AV is not working. It will be difficult to discern without testing a different AV.

I am planning to reduce my AV dose to the minimum I need once I stop having flare ups and relapses. I had hoped I'd be able to reduce my dose over the summer as I don't usually get sick in the summer, but for now I still need the full dose.

I am on 1g, I had hoped to go to 750 mg and then possibly down to 500 mg. I had almost ran out of meds this past weekend (pharmacy was having multiple issues!) and cut down to 500 mg per day to conserve tablets and started to be symptomatic. So I believe meds are helping me, and dose cannot be cut down yet, and taking a break at this point would cause a major relapse.

Since I'm not having gnarly heart palps or air hunger this year, I really don't want to take chances.

Not trying to speak for you at all, just for myself.

If they're helping you that's great. all of my symptoms have gotten worse while on them. It's been about four months. I was declining beforehand, I guess. But I have noticed side effects that seem more solidly linked to the actual medication dosage, like i get dizzy right after I take it.

I don't think the antivirals I'm on are particularly toxic, valtrex is supposed to be relatively mild compared to some other ones. Maybe they would help if I stuck it out for two years, but my doctor thinks my objections are fairly reasonable, given how much time that is.

Again, I don't think not doing anything is desirable if you have viral infections. But there are interventions that can help that aren't antivirals. I'm trying to think holistically...

 

[frozenborderline]

I'm treated by Jose Montoya's clinic at Stanford. They report a high percentage of significant improvement in patients with co-morbid IgG subclass deficiency and ME/CFS.

If it were me ? I might drop everything else and try the IVIG route ... if your insurance will cover it.

JMHO. YMMV ;-)

my insurance will probably cover it given the low levels, but I may have to do a pneumovax vaccine first and get retested... and some people say that pneumovax makes their cfs worse. It might really be worth it, i'm just playing telephone with my various doctors rn and it's all taking months to even get IVIG started

 

[frozenborderline]

I'm treated by Jose Montoya's clinic at Stanford. They report a high percentage of significant improvement in patients with co-morbid IgG subclass deficiency and ME/CFS.

If it were me ? I might drop everything else and try the IVIG route ... if your insurance will cover it.

JMHO. YMMV ;-)

this is really good to hear though!

My doctor is pretty good, but I may see the stanford people at some point

 

[BadBadBear]

Valtrex has some issues with renal toxicity in the renal tubes, hence the commandment that goes with it to drink water, water, water. If you have underlying kidney disease, it can be patently neurotoxic (https://www.amjmed.com/article/S0002-9343(15)00182-5/pdf).

Famvir is somewhat toxic for my liver (elevated enzymes) hence we monitor closely.

If the natural stuff works for you, then that's great. Maybe worth a try if you have not explored that route to your satisfaction.

I think your objections are perfectly reasonable. Far as I'm concerned, you don't have to defend following a gut feeling about what is right for you.