Peginterferon Lambda (IFN-λ) to treat Coxsackie/Enterovirus B

[sometexan84]

The new drug Peginterferon λ-1a (PEG-IFN-λ or PEG-IL-29), to treat chronic Echovirus and Coxsackievirus B.

Anyone want to try it w/ me? Let me know! (3 spots available)


The treatment in a nutshell...

Chronic Enterovirus B is usually in your gut (GI tract)*

• Enteroviruses invade gut/intestinal mucosa, as this is a reservoir for viral persistence. The mucosa consists of epithelial cells
• Enterovirus found in parietal cells of ME/CFS patients. (Parietal cells are epithelial cells)
• Again, Enterovirus targets the gastrointestinal epithelium
• GI Tract, or intestinal epithelium, or intestinal mucosa, all same thing

* even if you know you have chronic enterovirus b in places other than gut (e.g. brain, pancreas, heart), it still likely means you have the infection in your GI tract still as well.


(GI tract) Intestinal epithelial cells are infected

• IEC (intestinal epithelial cells) – those in the GI tract (aka barrier, aka mucosa, aka epithelium etc)

GI tract secretes IFN to destroy infection

• Epithelium secretes type I and III interferons (IFNs) to kill virus.

Enterovirus B eliminated successfully by IFN

• Type III IFNs exert a potent antiviral activity against Coxsackievirus B.

but wait... Coxsackie BLOCKS IFN III (lambda)

• But Coxsackie B evades host’s immune response in the intestine by preventing type I and III IFN expression in epithelial cells
• CVB cleaves proteins in infected intestinal epithelial cells, blocking IFN III expression.
• Thus, evading immune response

Peginterferon lambda (IFN III) to the rescue

• Interferon-Lambda: A Potent Regulator of Intestinal Viral Infections

 

[godlovesatrier]

How many people have gone into remission from this treatment now @sometexan84 ? Thanks.

 

[sometexan84]

How many people have gone into remission from this treatment now @sometexan84 ? Thanks.

Zero?

Idk, am I in remission if I'm 85% better? If so, then 1 I think.

When multiple people start going into remission from this, you will know. It will be posted relentlessly.

Hopefully, this happens in 2024

 

[Hip]

Idk, am I in remission if I'm 85% better? If so, then 1 I think.

You might like to use the Phoenix Rising ME/CFS scale to gauge your improvements on interferon lambda, found in this thread, and pasted below:

Phoenix Rising Severity and Level of Activity Scale

0 — VERY SEVERE: Bedridden constantly, except to go to bathroom.

1 — SEVERE: Bedridden most of day, very rarely leave house.
2 — SEVERE: Leave house once a week, concentrate 1 hour a day.

3 — MODERATE: Leave house several times per week, 2 hours work/activity a day.
4 — MODERATE: 3 to 4 hours work/activity a day.
5 — MODERATE: 4 to 5 hours work/activity a day.

6 — MILD: 6 to 7 hours activity a day, able to do a part-time job.
7 — MILD: Able to do a full-time job but with difficulty.
8 — MILD: Near-normal life activity level, but still symptomatic.

9 — RECOVERY: Normal life activity level, mild symptoms.
10 — RECOVERY: Fully recovered, or in full remission.

On this scale, recovery/remission is when you return to normal life activity levels, and have little or no symptoms.

This scale is a good way to quantify the effectiveness of a treatment: if you know where you were on the scale before treatment, and you know where you ended up on the scale after treatment, then you can quantify the effectiveness by the number of scale levels you have climbed.

 

[godlovesatrier]

Ok thanks for the update.

 

[sometexan84]

You might like to use the Phoenix Rising ME/CFS scale to gauge your improvements on interferon lambda, found in this thread, and pasted below:



On this scale, recovery/remission is when you return to normal life activity levels, and have little or no symptoms.

This scale is a good way to quantify the effectiveness of a treatment: if you know where you were on the scale before treatment, and you know where you ended up on the scale after treatment, then you can quantify the effectiveness by the number of scale levels you have climbed.

Ok thx. Then based on this Scale...

I went from a 5.5 to 8.5

I was a 5.5 prior to ever starting Lambda. Now 8.5, because, though I'm at normal life activity level, my body is still needing like 11 hrs of sleep at night. And I still have days where I feel sluggish, though it's never "crash" level... like my sluggish days don't require me to be in bed all day or anything.

 

[Dude]

Sorry if I'm infiltrating this topic, I'm really interested in peginterferon However, I'm not sure if my cfs is due to entero. Unfortunately there is no way to test this in my area. Do you think this can be determined somehow based on the chronological symptoms? Even before the classic cfs symptoms like fatigue or pain came, I had terrible gastritis and nausea. Only gradually did the other symptoms appear.
I found this article that I find quite interesting.

https://meridian.allenpress.com/apl...4/Acute-Gastritis-Associated-With-Enterovirus

 

[Hip]

However, I'm not sure if my cfs is due to entero. Unfortunately there is no way to test this in my area. Do you think this can be determined somehow based on the chronological symptoms? Even before the classic cfs symptoms like fatigue or pain came, I had terrible gastritis and nausea. Only gradually did the other symptoms appear.

Yes, you can obtain suggestive evidence for an enterovirus infection from the acute phase symptoms. In this MEpedia enterovirus article, it details the acute symptoms in the "Acute Enterovirus Infections" section.

Another way to help identify your virus is by its incubation period. If you happen to know the day you first caught the virus (maybe you caught it from someone on a specific date), and you know the day the first symptoms appeared, then you can calculate the incubation period.

The incubation period for coxsackievirus B is 3 to 5 days, and the incubation period for echovirus is 2 to 14 days. These enterovirus incubation periods are much faster than the incubation period for Epstein-Barr virus (4 to 6 weeks) and cytomegalovirus (3 to 12 weeks), which are the main herpesviruses linked to ME/CFS.

So if your incubation period was days rather than weeks, the ME/CFS-triggering virus you caught was probably an enterovirus rather than a herpesvirus.

 

[sometexan84]

Sorry if I'm infiltrating this topic, I'm really interested in peginterferon However, I'm not sure if my cfs is due to entero. Unfortunately there is no way to test this in my area. Do you think this can be determined somehow based on the chronological symptoms? Even before the classic cfs symptoms like fatigue or pain came, I had terrible gastritis and nausea. Only gradually did the other symptoms appear.
I found this article that I find quite interesting.

https://meridian.allenpress.com/apl...4/Acute-Gastritis-Associated-With-Enterovirus

You can also check out Dr John Chia's ev case studies on his website here. There are 8 of them... you can maybe see if they sound familiar...

https://www.evmedresearch.com/case-study-1.html

 

[Dude]

@Hip @sometexan84

Wow, those two pages were a real eye-opener. Especially this burning and pressure pain in the stomach area, which I have almost daily in varying intensity and form. I had a colonoscopy because it felt like it was coming from the intestines. According to this logic, this should be a unique characteristic of enteroviruses? Would that mean that EBV/Covid indicated CFS don't have this symptom at all? But yes, it's all starting to make sense. Right after the stomach bug incident I had a bronchitis that lasted about 5 weeks and I said to my wife, this is somehow not normal. This is also cited as a characteristic of enteroviruses. Then the gastritis and the nausea, the puzzle is slowly coming together.

Recently someone posted a study where they tested pleconaril and ribavarin in type 1 diabetes patients because they suspect enteroviruses there too.

If you know the trigger, it gives you a completely different feeling. It's unbelievable how many studies there are on enteroviruses as a trigger for cfs. After some long covid patients have been cured by monoclonal antibodies, a universal one for all RNA viruses would be great.

Enteroviruses and coronaviruses: similarities and therapeutic targets

 

[Hip]

According to this logic, this should be a unique characteristic of enteroviruses?

I know that EBV only very rarely causes any gastrointestinal symptoms when you catch it. So if your acute infection began with a gastrointestinal upset, then it's very unlikely to be EBV. I can't remember offhand whether cytomegalovirus can cause GI symptoms during the acute infection, so you might have to Google that. I think SARS-CoV-2 can cause GI symptoms.

Generally enterovirus hits the gut, hence its name.

 

[sometexan84]

Would that mean that EBV/Covid indicated CFS don't have this symptom at all?

I think pairing EBV and Covid together is a mistake. The Enterovirus in ME/CFS and the SARS-CoV-2 in Long covid have both been shown to reactivate EBV. I don't believe in EBV as a cause for ME/CFS/LC, at least not in the majority of cases. It's just a secondary thing that occurs from the RNA virus. So studies and docs see an active EBV (or other herpesvirus) infection and it's easy for them to point to that as the culprit..

That said, Long Covid patients have the gut issues as well. They're doing more studies on a larger scale to confirm SARS-CoV-2 lingers in intestinal lining, like enterovirus. Hopefully that happens soon and will be a real eye opener for many

 

[godlovesatrier]

I'm also convinced ebv doesn't do anything in your gut at least not in the same way evs do.

Incubation period for me was about 14 days. It's hard to be super exact. But it must have been between 9 and 20 days after infection. Anyway Dr Hyde discusses this incubation period in his book and Dr Bansal also clinically diagnosed possibly ev infection based on that too.

Hopefully after polybio show infection somebody will look at treatments again.

 

[Hip]

I went from a 5.5 to 8.5

I was a 5.5 prior to ever starting Lambda. Now 8.5, because, though I'm at normal life activity level, my body is still needing like 11 hrs of sleep at night.

Can I ask, to achieve this major improvement, moving up from 5.5 to 8.5 on the Phoenix Rising ME/CFS scale, how much interferon lambda did that require?

Like how many injections did you give yourself in total, how often did you administer those injections, and what dose of lambda was in each injection?

In the past, when Dr Chia used interferon alpha to treat his enterovirus ME/CFS patients, he gave injections of interferon three time a week, with each injection containing a dose of 3 million IU, and I believe he would do this for 3 to 5 months.

 

[godlovesatrier]

Yes it was 3 to 5 months and then they'd relapse after a few months much to his frustration. Although I think some did get away with permanent improvement but I'm not too sure on that.

 

[Hip]

Yes it was 3 to 5 months and then they'd relapse after a few months much to his frustration. Although I think some did get away with permanent improvement but I'm not too sure on that.

Yes, I think with interferon alpha, Dr Chia found most patients relapsed typically 4 to 14 months later.

Often it was a prolonged bout of heavy exercise that triggered the relapse, Dr Chia noted. If I remember correctly, his own son relapsed from interferon treatment after a 1 week hiking holiday. So that's the sort of prolonged exercise that you might want to avoid if you are in remission after interferon treatment.


But some of Dr Chia's patients lasted for 2 to 3 years without remission, it says in this article:

I have treated 70 patients with the combination of alpha and gamma interferon, and the efficacy is about 47% overall. I reserve the interferon treatment for patients with severe fibromyalgia without debilitating fatigue.

The cost is prohibitive ($5000/month) and the side effect does not allow patient to continue the treatment for more than 1-3 months. Few patients had remission of symptoms for as long as 2-3 years. The chance of improvement is minimal, If the myalgia is not dramatically better by 2-4 weeks on interferon treatment.

This article also has useful info about relapse times:

Dr Chia reported the following results using three kinds of interferon therapy.

Interferon alpha + ribavirin — Interferon alpha in combination with Ribavarin greatly reduced antibody levels to enteroviruses and improved fatigue levels and flu-like symptoms in 7 highly symptomatic patients but 4 of the 7 patients relapsed and their enteroviral levels rose four to five months after the treatment ended.

Interferon alpha + delta — Eight of 14 severely ill ME/CFS patients with enteroviral RNA in their blood returned to work on a half or full time basis after interferon alpha/delta therapy but most relapsed several months later. Heavy exertion was a common relapse trigger. Some patients responded well to another course of interferon.

Interferon alpha + gamma — One patient receiving interferon alpha/gamma three times a week returned to full-time work two months later and was well for 14 months when she relapsed. Another patient had a similar response. Dr. Chia reported that eight of 14 severely ill ME/CFS patients with enteroviral RNA in their blood returned to work on a half or full time basis but most relapsed several months later.

 

[godlovesatrier]

Nice summary Thanks!

 

[sometexan84]

Can I ask, to achieve this major improvement, moving up from 5.5 to 8.5 on the Phoenix Rising ME/CFS scale, how much interferon lambda did that require?

Like how many injections did you give yourself in total, how often did you administer those injections, and what dose of lambda was in each injection?

In the past, when Dr Chia used interferon alpha to treat his enterovirus ME/CFS patients, he gave injections of interferon three time a week, with each injection containing a dose of 3 million IU, and I believe he would do this for 3 to 5 months.

I did 180ug subQ inject once/week for like 6+ months.

My improvements though were from just that first 1+ month of treatment. I didn't see many major gains in the next 5 months. But I know there were quality issues w/ the lambda. IMO, the best lambda was the very first batch.

I never stopped doing 180ug once/week. Always same dose, same frequency.

 

[Hip]

My improvements though were from just that first 1+ month of treatment. I didn't see many major gains in the next 5 months.

That's very interesting, so the improvements appeared pretty quickly.

And if I remember correctly, I think you mentioned that each time you inject the lambda, you feel pretty tired for the next day or two, is that right?

So you have a day or two each week where you are quite tired, due to the injection; but then for the rest of the week, your ME/CFS remains in an improved state, close to remission.

Did anyone else in your group trying lambda get similar good results?

I never stopped doing 180ug once/week.

According to this paper, 1 μg of interferon alpha corresponds to 250,000 IU.

I could not find any conversion figures for interferon lambda, but assuming a roughy similar conversion, your 180 μg of lambda might be equivalent to around 45 million IU. But I am not sure if we can assume a similar conversion.

 

[sometexan84]

And if I remember correctly, I think you mentioned that each time you inject the lambda, you feel pretty tired for the next day or two, is that right?

It fluctuated a lot. But there was a consistency amongst me and others, with a 3-4 day post-injection fatigue. So, not the following day really... though this was reported sometimes w/ others, and maybe even w/ me at some point.

I think it's a peak concentration thing...

Did anyone else in your group trying lambda get similar good results?

Yes, but many of the gains they saw plateaued like 1-3 months in, and I think some of them ended up losing the gains they saw. I can only speculate.