Enteroviruses - revisited

[JES]

Famcyclovir has no antiviral activity against enteroviruses, at least not provenly. If it would work against EV I'm pretty sure Dr. Chia would be prescribing it for most of his patients, which he isn't. But CFS/ME patients often have high antibody response against multiple herpesviruses, so it's not unreasonable to expect some improvement on famcyclovir. Anyway, some on this forum are using famcyclovir/valacyclovir long-term and have seen benefits.

 

[Hip]

I belive it was Dr. A. Martin Lerner(RIP)who had very good results with high dose Famcyclovir and Valcyte. Do you think it was simply due to his CFS patients only having herpes viruses causing there CFS?

Dr Lerner's Valtrex, Famvir and Valcyte study is here. In this study, when Lerner treats patients with herpes family virus infections, he does check the patient for certain co-infections, but I don't think he checks them for enteroviruses, which require specialist testing, because he does not mention the enteroviruses coxsackievirus B or echovirus in the study.

Some of the ME/CFS doctors focused on herpes family virus infections seem to show little or no interest in enterovirus, for some unknown reason.

 

[flitza]

@halcyon do you know how Chia admisters his DHQ?

You didn't ask me but I happen to have current info on this. If this is old news please disregard.
I saw Dr. Chia a few days ago and he recommended that I start of DHQ for MCAS issues and it's antiviral properties. He specifically recommended Swanson's Russian Rejuvenator and starting with one capsule a day for one week and then going to two capsules a day if tolerated.

 

[Hip]

I saw Dr. Chia a few days ago and he recommended that I start of DHQ for MCAS issues and it's antiviral properties. He specifically recommended Swanson's Russian Rejuvenator and starting with one capsule a day for one week and then going to two capsules a day if tolerated.

Very interesting @flitza, thanks for passing on that info. Did Dr Chia say what sort of intolerance symptoms might appear if too much dihydroquercetin (DHQ) is taken too fast? I took starting doses of two 45 mg capsules of DHQ a day, going up to 4 capsules. At 4 capsules daily, I had the side effects of overstimulation and some irritability.

 

[Never Give Up]

Very interesting @flitza, thanks for passing on that info. Did Dr Chia say what sort of intolerance symptoms might appear if too much dihydroquercetin (DHQ) is taken too fast? I took starting doses of two 45 mg capsules of DHQ a day, going up to 4 capsules. At 4 capsules daily, I had the side effects of overstimulation and some irritability.

We saw him yesterday and got the same recommendation for Swanson DHQ, the instructions were to take one capsule/day for one week, then to increase to one capsule two times per day.

He also said that about a week and a half ago they, "finally figured out how to find the enteroviral RNA, it was so simple! It was right there in front of us all this time! I can't believe we didn't figure it out before!" When I asked him what the new method was he said, "I can't tell you that." I hope he patents a test and gets filthy stinking rich helping to diagnose EV infections.

He also said that the two drug companies working on anti EV meds are making progress and that both now know what a huge market they have, before they thought they were going after a market of about 200,000 kids per year with EV in the brain. They have recently increased the size of their teams working on these drugs. He mentioned that the anti hep C meds are so smart that they wake the virus up, make it come out of hiding and then kill it. Five years ago nobody thought it was possible to get rid of hep C and now we can, or at least get rid of enough of it that the immune system can easily take care of what remains. He sees a similar future for EV infections.

He also said that in conversations with Dr.'s Nath and Peterson that Dr. Nath asked Dr. Peterson what the initial symptoms of his original patients were and after hearing Peterson's description Dr. Nath said, "That's viral encephalitis."

With his news, and that coming out of the Iime conference, I have a vision of a key emerging, turning the lock and turning good health back on for all ME patients. I see you running on the beach, playing sports, retaking your careers, building social lives- living- taking over the world! It will happen. Maybe soon!

 

[halcyon]

We saw him yesterday and got the same recommendation for Swanson DHQ, the instructions were to take one capsule/day for one week, then to increase to one capsule two times per day.

I've spoken with one enteroviral ME patient that said DHQ improves their POTS a massive amount. Sadly I've not seen any effect from it.

He also said that about a week and a half ago they, "finally figured out how to find the enteroviral RNA, it was so simple! It was right there in front of us all this time! I can't believe we didn't figure it out before!" When I asked him what the new method was he said, "I can't tell you that." I hope he patents a test and gets filthy stinking rich helping to diagnose EV infections.

Interesting. Looking forward to hearing more about this.

He also said that the two drug companies working on anti EV meds are making progress and that both now know what a huge market they have, before they thought they were going after a market of about 200,000 kids per year with EV in the brain. They have recently increased the size of their teams working on these drugs. He mentioned that the anti hep C meds are so smart that they wake the virus up, make it come out of hiding and then kill it. Five years ago nobody thought it was possible to get rid of hep C and now we can, or at least get rid of enough of it that the immune system can easily take care of what remains. He sees a similar future for EV infections.

To be honest, this is the only thing that gives me any hope at all right now.

He also said that in conversations with Dr.'s Nath and Peterson that Dr. Nath asked Dr. Peterson what the initial symptoms of his original patients were and after hearing Peterson's description Dr. Nath said, "That's viral encephalitis."

This is what Peterson's recent cytokine research on his cohort showed as well. Elevated interferon alpha in the CSF is almost 100% always viral infection of the CNS.

 

[Hip]

He also said that about a week and a half ago they, "finally figured out how to find the enteroviral RNA, it was so simple! It was right there in front of us all this time! I can't believe we didn't figure it out before!"

Sounds absolutely fascinating; hopefully that will lead to sensitive tests for chronic enterovirus infection, which should help push ME/CFS enterovirus research forward.

He also said that the two drug companies working on anti EV meds are making progress and that both now know what a huge market they have, before they thought they were going after a market of about 200,000 kids per year with EV in the brain.

That's great news. And it shows the amazing efforts that Dr John Chia has put into moving ME/CFS research and treatment forward, as I believe Dr Chia spent a lot of time courting drug companies, and making them aware of the link between chronic enterovirus infection, and the 17 million ME/CFS patients worldwide, which is good market.

We saw him yesterday and got the same recommendation for Swanson DHQ, the instructions were to take one capsule/day for one week, then to increase to one capsule two times per day.

Did Dr Chia by chance mention what kind of improvements he was observing in his patients using DHQ? And was two capsules per day of the Swanson dihydroquercetin (which contains 45 mg DHQ per capsule) the maximum dose he recommended?

Do you yourself have a chronic active coxsackievirus B4 infection? The study showed DHQ is antiviral for coxsackievirus B4, but not other viruses. It's possible DHQ may also be antiviral for other CVBs, and maybe for echovirus too; but all we know for sure from the study is that DHQ is effective against CVB4.

 

[Jesse2233]

This is really great news, god bless Dr Chia.

If the right antiviral is found, will it treat the CNS?

Also is there an upper safe limit for DHQ? I'm at 2 Swanson pills, but I'd like to keep going up. My concern is that it has poor oral bioavailability and needs an intrepraneal injection instead. Liposomal DHQ could be another option

 

[halcyon]

If the right antiviral is found, will it treat the CNS?

This is the only thing I worry about. When I talked to Chia about this many months ago, he mentioned that one of these drugs worked well in a mouse model, but he said the researchers weren't super clear about how well it penetrated the CNS. Perhaps he has found out more since then.

 

[Never Give Up]

I've spoken with one enteroviral ME patient that said DHQ improves their POTS a massive amount. Sadly I've not seen any effect from it.

Sorry to hear that. Dr. Chia did say that it has helped some of his patients' POTS, one was even able to get off of Midodrine and Florinef. How have the other POTS treatments worked for you? Have you tried any other Mast cell stabilizers? They might help.

To be honest, this is the only thing that gives me any hope at all right now.

Now you're making me cry. Don't give up! We're so close now. The cards are about to fall into place. You will get better! I know you will!

This is what Peterson's recent cytokine research on his cohort showed as well. Elevated interferon alpha in the CSF is almost 100% always viral infection of the CNS.

That's good to know. I haven't seen it yet. Do you have a link handy?

Hang in there.

Never Give Up!

 

[Never Give Up]

Did Dr Chia by chance mention what kind of improvements he was observing in his patients using DHQ? And was two capsules per day of the Swanson dihydroquercetin (which contains 45 mg DHQ per capsule) the maximum dose he recommended?

Do you yourself have a chronic active coxsackievirus B4 infection? The study showed DHQ is antiviral for coxsackievirus B4, but not other viruses. It's possible DHQ may also be antiviral for other CVBs, and maybe for echovirus too; but all we know for sure from the study is that DHQ is effective against CVB4.

He said it basically helps all symptoms, but that it didn't work for everybody.ETA: He said it helps about 50% of his patients who try it.

His patients have tried various doses. He recommends twice a day, but it did sound like he might recommend an increase after a trial of twice per day.

My son is the one with ME, he has coxsackie b5.

@halcyon I should mention that his POTS cardiologist put him on cromolyn, which is a Mast cell stabilizer. He tried it for 2 weeks. It didn't seem to be doing anything for him so he quit. Then many of his worst symptoms came back, severe cognitive impairment, not being able to move or speak, etc. I told him to try going back on it. He did and the symptoms went away again. Now that he's been on it 7 months he crashes less frequently, and when he does crash it's not as bad, and he bounces back much more quickly.

 

[Never Give Up]

This is really great news, god bless Dr Chia.

If the right antiviral is found, will it treat the CNS?

Also is there an upper safe limit for DHQ? I'm at 2 Swanson pills, but I'd like to keep going up. My concern is that it has poor oral bioavailability and needs an intrepraneal injection instead. Liposomal DHQ could be another option

One of the big motivations for developing an anti EV is the kids who are getting EV infections in their brains, so I know that CNS penetration is a goal.

Since you are a patient of Dr. C's you could call or message him to ask him about the upper limits.

 

[Never Give Up]

This is the only thing I worry about. When I talked to Chia about this many months ago, he mentioned that one of these drugs worked well in a mouse model, but he said the researchers weren't super clear about how well it penetrated the CNS. Perhaps he has found out more since then.

He indicated to me some months ago that they are absolutely working toward CNS penetration.

 

[Jesse2233]

He indicated to me some months ago that they are absolutely working toward CNS penetration.

Thanks for all the updates!

I forgot that Dr Chia mentioned the CNS penetration to me as well. I believe this is Rega Compound 17 which eradicated chronic CBV4 from the stomach, brain, and muscle tissues of living mice without major side effects

 

[Hip]

Also is there an upper safe limit for DHQ? I'm at 2 Swanson pills, but I'd like to keep going up.

My concern is that it has poor oral bioavailability and needs an intrepraneal injection instead. Liposomal DHQ could be another option

I went up to 4 and even 6 Swanson DHQ capsules per day, and started to feel strong mental overstimulation, probably caused by the fact that DHQ is closely related to quercetin, and in the past I also observed quercetin to overstimulate. But I found 2 capsules of DHQ per day were fine. Though I have not done any long term tests of DHQ as yet, just brief tests.


The oral absorption of DHQ is only 0.49% according to this study (in which DHQ is called by its other name taxifolin).

However, this study says that oral DHQ absorption goes up to 36% if dissolved in lipid solution. So it might be a good idea to swallow a tablespoon or two of cooking oil or coconut oil with your DHQ.


But for me, the oral bioavailability of DHQ is not the issue, in that I can't really go higher than 2 capsules a day anyway, because of the overstimulation side effect. So that is already the maximum dose I can comfortably handle. I took my DHQ with some coconut oil, so maybe I was getting pretty good bioavailability.

 

[halcyon]

How have the other POTS treatments worked for you? Have you tried any other Mast cell stabilizers? They might help.

I still haven't tried anything specifically for the POTS. Midrodrine and Florinef are contraindicated as I appear to have hyper POTS and my blood pressure can get pretty high. I'm dubious about beta blockers given the side effects and possible risks related to MCAS.

That's good to know. I haven't seen it yet. Do you have a link handy?

It's this study. This aspect of the findings doesn't seem to be discussed much, but you can see IFN a2 levels are quite elevated early on in classic patients. This is supposed to have high specificity for viral infections.

 

[Jesse2233]

However, this study says that oral DHQ absorption goes up to 36% if dissolved in lipid solution. So it might be a good idea to swallow a tablespoon or two of cooking oil or coconut oil with your DHQ.

Interesting, so I would swallow a tablespoon of coconut oil as I took the DHQ? Or should I put the DHQ inside of a lump of it first?

 

[Hip]

Interesting, so I would swallow a tablespoon of coconut oil as I took the DHQ? Or should I put the DHQ inside of a lump of it first?

At one stage, I was melting a tablespoon or two coconut oil, and then opening up a capsule, and mixing in the DHQ power into the oil (the melting point of coconut oil is 24ºC, so it is solid in winter, but liquid in summer). But that takes a bit of effort, and is a bit of a hassle to do every day, so just swallowing some coconut oil as you take the capsules might be easier.

 

[Nickster]

I went up to 4 and even 6 Swanson DHQ capsules per day, and started to feel strong mental overstimulation, probably caused by the fact that DHQ is closely related to quercetin, and in the past I also observed quercetin to overstimulate. But I found 2 capsules of DHQ per day were fine. Though I have not done any long term tests of DHQ as yet, just brief tests.


The oral absorption of DHQ is only 0.49% according to this study (in which DHQ is called by its other name taxifolin).

However, this study says that oral DHQ absorption goes up to 36% if dissolved in lipid solution. So it might be a good idea to swallow a tablespoon or two of cooking oil or coconut oil with your DHQ.


But for me, the oral bioavailability of DHQ is not the issue, in that I can't really go higher than 2 capsules a day anyway, because of the overstimulation side effect. So that is already the maximum dose I can comfortably handle. I took my DHQ with some coconut oil, so maybe I was getting pretty good bioavailability.

My son tested positive for cocksackie b and Dr Chia only gave him equilibrant which unfortunately did not help. DHQ sounds like a newly discovered treatment. Have you used this and if so what type of success have you had?
Interesting @Hip @Jesse2233

 

[Never Give Up]

My son tested positive for cocksackie b and Dr Chia only gave him equilibrant which unfortunately did not help. DHQ sounds like a newly discovered treatment. Have you used this and if so what type of success have you had?
Interesting @Hip @Jesse2233

Did you ever go back? He generally tries a variety of things. If something doesn't work, he usually tries another approach, and another, until exhausting his current repertoire for each patient's specific infections. He is always trying something new on small groups of patients. If it works, he tries it on larger groups of patients, always with an eye on which patients respond and which don't. There is a give and take to working through complex illnesses with a doctor. You've got to stick with them to work their process for a while before you know if their approach will work for you or not.