Getting over the intolerance to antivirals

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What is an effective way to take the Antiviral medication, for the ppl who could not tolerate it? Is there supplements to add to help clear the Toxins?
Would boosting the immune system or other supplements help?
If it’s not herx, what do we take to make the process easier? Why does it happen? Would going slower help? How slow?

Has anyone been able to get over extreme and unexplainable Antiviral intolerance? Please share


This is my story:

It started for me about 4 days ago. Just like the few others who can’t tolerate their Antiviral meds, I started treatment with Famciclovir. It was For my high HHV-1 and CMV titres.

From day one, when I took the first 250mg, I felt extreme aches and pains!! Which was strange, and much worsening fatigue. I practically saw my health disappear before my eyes that day.... I ignored it, thinking it was just in my head. I proceeded to take another 250mg that afternoon. (bad idea) (following the agreed dose of 500mg daily.)

The next day it was very hard to wake up in the morning...also I continued being achy, and continued experiencing fatigue and brain fog like never before!! Confused, I brushed it off... and Took a total of 500mg that day, as well...By this point, I was much worse. I had intolerable pain, intolerable fatigue, no motivation, Brain fog. All my symptoms had worsened by about 40%.

On day 3 I noticed it had hit me tremendously and really bad. I woke up with bags under my eyes, tired, and difficulty breathing. I had severe chest and joint pains!! I could not even walk or anymore, do anything!! I had a severe response...

Something was seriously wrong!!! Why?? I couldn’t understand but I was affected like that! !! I figured I was a particularly very sensitive case.

Did my research, Some say it’s herx, immune activation, or simple intolerance...What are we supposed to do In this situation of intolerance? It felt like I had took a Poison of some kind, very very bad feelings... like I took something to make CFS Worse!! I had never felt that bad... :(

The body aches were intolerable, fatigue and neurological, lots of cognitive symptoms & brain fog!! I I felt like the illness got much worse!! Something had seriously for some reason gone very wrong, very very wrong...

I also have a sore throat, and flu-like symptoms!! No motivation, no energy, and extreme Brain Fog.All my symptoms worsened by about 50%, from how I was doing!! Or by about 2-4 points!! I have become completely disabled.

I worry that I might have done permanent damage. It’s been a few days, and I have not recovered... Instead, I am continuing to be getting worse. Do you see how that can be extremely worrying? I only took 60mg yesterday, but I’m afraid the damage has been already done. I have unbearable pain, sore throat and extreme cognitive issues...Essentially all my symptoms worsened by a lot. It wasn’t “new” symptoms added, just old ones worsened! Does anybody know what’s going on and how to fix it?

I don’t think that this is herx, or Die-Off. Because no new symptoms were reported? Could it be that the immune system started getting upset? or maybe that it was just an adjustment period?? (but a very harsh one at that) What should I do at this point? How do I get myself to tolerate it??

Anybody else had a very negative, intolerable response to Antiviral treatment, and had to stop due to the intolerable side effects?? How did you manage to like get over it? If “building your way up”, how slow should this be done? Maybe there’s an adjustment period after which, things get a bit better? Is there supplements one can take to ease the process? I took only 60mg but am still very sick...

500mg of Famciclovir daily is a very low dose...I had a horrible reaction. How do I get myself to tolerate the drug?? I have read of other people having difficulty tolerating Antivirals. How does one get over this...? Thank you so much for reading...I don’t want to be this Ill but I am quite disabled now... :(
 
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wigglethemouse

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The most important thing you can do is listen to your body. If your body is telling you to stop then stop. This applies to any treatment. I know of a few people that got worse on antivirals and never recovered to their previous baseline. I am one.

The good news is, is that you have only been taking them for four days and at a relatively low dose. I wish you luck, and hope with time you improve back to where you were.
 
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wigglethemouse

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Ron Davis and Bob Naviaux wrote about antivirals a few years ago
The inhibition of methylation reactions in the cell also affects neurotransmitter (dopamine, norepinephrine, and serotonin) and phosphatidylcholine membrane lipid synthesis, folate and B12 metabolism, and many other reactions. So by giving antivirals, doctors are not just inhibiting viruses, they are also inhibiting many host cell metabolic functions.

Sometimes the inhibition of host cell functions can attenuate ME/CFS symptoms for a time, but in other cases, using potent antiviral drugs inhibits mitochondrial and methylation reactions and can delay a full recovery from ME/CFS.
LINK

Many antibiotics like tetracyclines, erythromycin, and the fluoroquinolones (eg, Cipro), and antivirals like acyclovir, fialuridine, AZT, and ddC also inhibit mitochondrial functions when used chronically (usually for more than about 3 weeks). Because mitochondria are descendants of free-living bacteria, their machinery for protein synthesis, RNA synthesis, and DNA replication are susceptible to many antibiotics, and for reasons unique to mitochondrial DNA synthesis, they are also sensitive to antivirals. Chronic use of these drugs can do more harm than good if there is no longer good evidence for an active infection. When mitochondrial functions are critically impacted by long-term use of certain antibiotics, a ripple effect in metabolism and gene expression is produced that can further impair energy production by mitochondria, converting an active cell danger response that occurs during active infection to a hypometabolic survival response.
LINK
 
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So what you are saying, is that for those of us who didn’t tolerate Antivirals right away there is basically no hope to tolerating them in the future?? That’s not a good situation to be in at all...that’s very discouraging.

But what distinguishes a ‘hyper sensitive’ person from one who tolerates them just fine, then? When both have cfs??

Who or what decides that I’m going to be a non-responder; but the next person will be just fine? Do you happen to know this??
Or for instance, if we both suffer from the same symptoms of CFS - that are Viral in nature. (For me HHV-1 and CMV)

This is very bad news... It hurts my head and is hard to wrap my mind around this. but the ‘intolerance’ was very much there...even at the lower dose.

It’s confusing, because what you have posted doesn’t justify why one would get sick earlier than 3 weeks for instance... Or the fact that Famciclovir is not really considered a “Potent” Antiviral, it does seem to be the easiest one to tolerate? So we have a naturally weaker system? It’s is not like Valcyte- but that was the same response...

I have read of people who were sensitive who took the long road and gradually increased their dose - I wonder if that can be the solution...What’s really involved in some people’s extremely exagerated response?? could it be the immune system?
 
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Wonkmonk

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Here is my experience, but there needs to be a huge disclaimer that I might be a very special case and this doesn't mean anyone else is going to experience something similar.

I started at very high doses of Valacyclovir in January 2017 according to Dr Lerner's protocol for suspected EBV-induced CFS (6,000mg a day, i.e. 1,500mg four times a day). At first there was a mild worsening of most symptoms in the first 3-4 weeks, but nothing close to what you describe. It was easy to tolerate and it didn't really feel like a real worsening, more like a "cleaning out". It was easy to imagine that this is part of a longer-term recovery.

After 5-6 weeks, this disappeared and I started to feel a bit better. I improved from 1 point on Dr Lerner's scale to 4 or even 4.5 at some point.

However, after 3-4 months, I started to worsen badly with no apparent reason and fell back to 1 on the Lerner scale, but with much more pain, especially in the back/kidney area. It was so bad that I had to stop Valacyclovir altogether for a few weeks. I tried to restart it because it actually had helped and it was (and is) the only game in town when it comes to treatment, but I couldn't tolerate even very low amounts (500mg a day), just as you described.

I tried a lot of other things (probenecid to protect the kidney, Famvir, Brivudine etc.), but it felt like I couldn't tolerate any antiviral at all, even in very low amounts.

It's extremely strange, but I somehow realized that I COULD restart Valacyclovir (in lower doses up to 1,500mg) when I made some adjustments to my diet and lifestyle. These are:

- Discontinue all supplements, except occasional low-dose lysine
- Discontinue all NSAIDs - Aspirin, ibuprofen etc. (i don't need them for a medical condition)
- Eat a diet that contains moderate calcium intake (800-1000 mg a day)
- Keep Vitamin D at low-normal levels (20-25 ng/ml), don't allow it to rise, neither by sun nor supplements
- Avoid foods high in potassium and fiber (target 2000-3000mg potassium, 15-25g fiber per day)
- Avoid excessive protein intake (200mg meat or fish max a day)
- Keep all meals at moderate amounts eat 3-4 moderate meals instead of just 2 big
- Distribute intake of protein, potassium and calcium over the day, don't eat high amounts in one meal
- Always avoid the following foods and spices: Garlic, potatos with skin, tomatoe sauce (fresh tomatoes may be ok), chili, curcuma.
- Avoid high amounts of Omega 6 fatty acids (possibly also coconut oil and alpha-linoleic acid)
- Cut down salt to 5-7 grams a day
- Avoid room temperatures above 23 Celsius, especially at night

This is very strange because this actually leads to a rather unhealthy diet. I have to avoid most fruit and vegetables, have to eat white bread most of the time (brown rice seems ok, too) and have to avoid many healthy fats (though olive oil seems to be ok) and have lower Vitamin D than would ideally be recommended.

BUT: This strange approach definitely helps with my symptoms AND I was able to restart the antivirals without adverse effects at 1,500mg Valacylcovir a day. I have a theory why this all helps me specifically but it is too strange and unsubstantiated to discuss in public (and there is no evidence, it's just speculation).

Since I am doing this, antivirals do help a bit, but not really much. I am back to 3-4 on the Lerner scale, pain is reduced markedly, but there seems to be a plateau, especially I have never reached point 5 on the Lerner scale which would mean being able to work some hours.

While trying these changes for a couple of weeks is low risk and probably doesn't hurt anyone too badly, I do NOT believe this approach helps many people other than me. I believe I am a very special case.

That said, however, I have seen several people complain how higher Vitamin D and Calcium makes them worse and there is at least one thread in which people discuss how "healthy eating" makes them worse, so maybe there are some people who might benefit from trying the approach, but I think the chances it helps are rather low, although I am absolutely convinced it has causally helped me. Whenever I deviate from it, I am getting substantially worse.
 
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Sidny

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@sufferingwithme
I was just researching fucoidan which has known anti viral properties and came across this site.

https://pronovex.com/#
It seems all the ingredients have anti viral properties and what I would assume are potentianted by being used in combination with each other.

I know not all herbs and supplements that show efficacy in vitro work in vivo but I doubt many human studies are being done anyway for non pharmaceutical patentable medicines.

Interestingly the first herpes antiviral was isolated from an ocean sponge in the 50s before acyclovir replaced it. So there's no reason not to keep an open mind about the potential effectiveness of natural medicines.

I was thinking of trailing famvir but if the mechanism behind its effectiveness has to do with host cell function inhibition then I think it's a case of side effects being as bad as or worse than the disease itself. (Which is not really a good solution in my opinion)
 
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Tammy

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I know not all herbs and supplements that show efficacy in vitro work in vivo but I doubt many human studies are being done anyway for non pharmaceutical patentable medicines.
I wish there were.................I for one have made good improvement with herbal anti-virals.

there's no reason not to keep an open mind about the potential effectiveness of natural medicines.
 

wigglethemouse

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Are there any just as effective herbal alternatives that don't inhibit host cell function and cause all this damage?
Herbal antivirals are discussed elsewhere on the site - I have no knowledge of them.

There is some thought that as nobody can find active virus evidence in patients yet for some folks antivirals help - maybe the antivirals are somehow modulating the immune system. That's why they think Valcyte can work even at very low doses in some patients (25mg or less).

I know some doctors and patients treat the immune system to help.
Treat Immune System Dysfunction
Since ME/CFS is, at its heart, an immune disorder (as more and more research has proven) and immune system dysfunction is behind many of our symptoms, it makes sense to try to normalize the immune system. The problem is that there aren't a lot of known ways to do this yet. ME/CFS is a mixed bag of immune dysfunction: parts of our immune systems are over-active and other parts are under-active. So the treatments typically used for autoimmune disease or for immune deficiencies don't usually work for us. We need to avoid both immune boosters and immune suppressors; instead we need to normalize or balance the immune system. Two simple and very inexpensive treatments have worked well for my son and I: low-dose naltrexone and Imunovir (generic name, inosine, sold as a supplement). Together, these two treatments (again, super cheap!) have dramatically improved our symptoms and quality of life. We have very few crashes anymore, and virally-induced crashes have almost disappeared completely. I almost never get sore throats or flu-like aches anymore, unless an infection is present. More recently, in the last few years, we added glutathione to our list of immune system treatments
LINK