Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

[Gzephyr]

First noticed brainfog, fatigue, and mild PEM around this time 3 years ago. Full blown mono a few weeks later and my symptoms got much worse. My PCP put me on 3 grams valacyclovir and the mono went away within a couple days but the symptoms I noticed beforehand persisted.

Came off the Valacyclovir(VAL) because I thought the infection was over and I’d feel better in a few weeks. Turns out I was wrong because I would get EBV flare ups about 24 hours after taking my last pill. They would improve in just less than 24hrs after taking a VAL pill.

These flare ups feel like a less severe form acute mono. The first symptoms I notice is that I get ulcers all over my tonsils(which become very swollen) and mouth along with a low grade fever. Then worsened PEM during the flare up and even long term after flaring up, and of course terrible fatigue.

I do believe this is an EBV flare up. I’ve been tested for other herpes viruses and always test negative. My EBV PCR is sometimes positive while off my VAL.

Considering the first symptom I notice is ulcers on my tonsils about 24 hours after my last VAL dose, I wonder if the EBV infection is lingering in my tonsils and my immune system can’t clear it. I’ve read that the tonsils can be a reservoir for EBV. Maybe a tonsillectomy will solve this problem.

Many doctors I’ve seen tend to believe that VAL does nothing for EBV other than inhibit oral replication, linking me to a study they’ve read (I will find this when I have time!). This makes me wonder if the benefit I receive from this drug is in line with EBV not replicating in my tonsils which causes less of an immune response thus improving my CFS symptoms. In my mind, removing the tonsils will remove EBV infected cells that are being targeted by my immune system.

-extra info-

3 years later my CFS is moderate/severe and I still have this problem but don’t dare to come off my antiviral because this will absolutely happen again and I may get worse. I missed a couple pills a few months ago and the same thing happened.

I’ve tried modest doses of both famvir and valcyte but they did absolutely nothing to stop these flare ups. Lysine, monolaurin, and several other herbal antivirals did absolutely nothing while while off my VAL, although lysine seems to help with brain fog while I’m on my VAL.

Side note: NAC seems to be the best non- prescription drug for my CFS. It seemingly brings my symptoms down from moderate/severe to just moderate while I’m taking it consistently. Interesting for sure.

Any advice is much welcome. My hypothesis may be completely ridiculous and getting my tonsils out could be a mistake. Would love to hear your thoughts. I’m very very nervous about this potential procedure because it’s a rough one at my age.

Thank you so much !

 

[keepontruckin]

Dietrich Klinghardt MD PhD recommends this procedure to many of his patients.

 

[serg1942]

Very interesting hypothesis!

I don't know if EBV virus can be so localized after 3 years of systemic ME/CFS...

But, after reading your text I thought about this study:

https://pubmed.ncbi.nlm.nih.gov/34757513/

They use SC lidocaine to inhibit the purinergic receptor P2X7 in order to desensitize the other purinergic receptors and get out of what Dr Naviaux coined as cell danger response. Then a T cell tolerance response (Tregs) is formed in the lymph nodes and exported to the whole body to downregulate the excessive response to SARS-COV-2.

Actually, the anti-purinergic therapy can be considered as a universal anti-viral tool, because most if not all infections need the stimulation of purinergic receptors in order to infect cells. You can read more about this in a previous message of mine:

https://forums.phoenixrising.me/thr...ustys-proposed-abnormalities-in-me-cfs.90173/

So, why not to try spread lidocaine on the lymph nodes? Or, take lidocaine disolved in DMSO and have it in the mouth for a while?

I have been taking topical lidocaine (that I make) for 2 months together with other anti-purinergic drugs, and the experience is been hard. It seems that when the extracellular ATP is decreased, the purinergic receptors get desensitized and the immune system revs up. Both the innate (NK, neutrophils) and the adaptative immune response (TH1, macrophages, dendritic cells) get stimulated and this causes a strong flare. So I don't anticipate an easy recovery, but perhaps a permanent one? Who knows...especially in you case with a seemingly clear and textbook viral reactivation occurring.

If you decide you like the idea and you have a doctor who would help you, I can give you some ideas about doses. I did a in deep review on appropriate dosages that would not be toxic but still therapeutic (but please be patient as I am experiencing a hard worsening, so I might take a few days to reply).

Take care,
Sergio

 

[Gzephyr]

Very interesting hypothesis!

I don't know if EBV virus can be so localized after 3 years of systemic ME/CFS...

But, after reading your text I thought about this study:

https://pubmed.ncbi.nlm.nih.gov/34757513/

They use SC lidocaine to inhibit the purinergic receptor P2X7 in order to desensitize the other purinergic receptors and get out of what Dr Naviaux coined as cell danger response. Then a T cell tolerance response (Tregs) is formed in the lymph nodes and exported to the whole body to downregulate the excessive response to SARS-COV-2.

Actually, the anti-purinergic therapy can be considered as a universal anti-viral tool, because most if not all infections need the stimulation of purinergic receptors in order to infect cells. You can read more about this in a previous message of mine:

https://forums.phoenixrising.me/thr...ustys-proposed-abnormalities-in-me-cfs.90173/

So, why not to try spread lidocaine on the lymph nodes? Or, take lidocaine disolved in DMSO and have it in the mouth for a while?

I have been taking topical lidocaine (that I make) for 2 months together with other anti-purinergic drugs, and the experience is been hard. It seems that when the extracellular ATP is decreased, the purinergic receptors get desensitized and the immune system revs up. Both the innate (NK, neutrophils) and the adaptative immune response (TH1, macrophages, dendritic cells) get stimulated and this causes a strong flare. So I don't anticipate an easy recovery, but perhaps a permanent one? Who knows...especially in you case with a seemingly clear and textbook viral reactivation occurring.

If you decide you like the idea and you have a doctor who would help you, I can give you some ideas about doses. I did a in deep review on appropriate dosages that would not be toxic but still therapeutic (but please be patient as I am experiencing a hard worsening, so I might take a few days to reply).

Take care,
Sergio

Very interesting. Keep me updated when you feel up to it! If you find relief I may go through with this

 

[cfs since 1998]

Any advice is much welcome. My hypothesis may be completely ridiculous and getting my tonsils out could be a mistake. Would love to hear your thoughts. I’m very very nervous about this potential procedure because it’s a rough one at my age.

I haven't heard of anyone recovering from ME/CFS by having their tonsils removed, but that doesn't mean it's not possible. I would say you should discuss it carefully with your doctor.

Alternatively, you might contemplate tenofovir alafenamide, as it is not only a better inhibitor of EBV than val/acyclovir, but it allegedly is well absorbed into lymph tissues, including tonsils.

 

[Andryr]

I haven't heard of anyone recovering from ME/CFS by having their tonsils removed,

Actually, there was a success story with tonsillectomy but I can't remember where I saw it (reddit or at PR?). But it's a lottery.

 

[cfs since 1998]

Actually, there was a success story with tonsillectomy but I can't remember where I saw it (reddit or at PR?). But it's a lottery.

Thank you for that information. I will try to see if I can find that post sometime.

I've been tempted to crush up some valtrex tablets, mix them with a liquid, and spray it into the back of my throat.

 

[Andryr]

I will try to see if I can find that post sometime.

This thread, I guess:
https://forums.phoenixrising.me/threads/successful-cfs-treatment-23-years-old.76908/

 

[datadragon]

NLRP3 inflammasome activation reactivates Epstein-Barr Virus. NLRP3 inflammasome inhibitors can efficiently repress EBV reactivation.
https://forums.phoenixrising.me/thr...n-efficiently-repress-ebv-reactivation.90835/

The P2X7 receptor is a cation channel activated by high concentrations of adenosine triphosphate (ATP) and activates the NLRP3 inflammasome which can be suppressed by active B6 that requires zinc and also magnesium sulfate which does not. The P2X7 receptor also regulates β-cell proliferation/survival but seems few read that. https://forums.phoenixrising.me/thr...purinergic-therapy.52427/page-10#post-2438658 @serg1942

Riboflavin, vitamin B2, attenuates NLRP3, NLRC4, AIM2, and non-canonical inflammasomes by the inhibition of caspase-1 activity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7645791/​

 

[Gzephyr]

I haven't heard of anyone recovering from ME/CFS by having their tonsils removed, but that doesn't mean it's not possible. I would say you should discuss it carefully with your doctor.

Alternatively, you might contemplate tenofovir alafenamide, as it is not only a better inhibitor of EBV than val/acyclovir, but it allegedly is well absorbed into lymph tissues, including tonsils.

I've browsed some EBV facebook posts and people claim it has helped their viral reactivations by getting their tonsils removed but not sure if they had CFS symptoms. I've probably talked to 4 or 5 that have noticed some benefit. Given that my CFS seems to be driven by these viral reactivations it may be good for me to at least start considering the surgery.

With that being said, I think it would be a good idea to try tenofovir first. Just don't know where to get it. I have an appointment with my PCP in a few weeks and he's been pretty helpful by prescribing things like Valtrex, Valcyte, etc. If I mention Tenofovir and show him a study or two he'll probably prescribe it for me.

Thanks !

 

[Gzephyr]

Thank you for that information. I will try to see if I can find that post sometime.

I've been tempted to crush up some valtrex tablets, mix them with a liquid, and spray it into the back of my throat.

haha I've thought of doing something similar but I doubt it would work !

 

[Gzephyr]

NLRP3 inflammasome activation reactivates Epstein-Barr Virus. NLRP3 inflammasome inhibitors can efficiently repress EBV reactivation.
https://forums.phoenixrising.me/thr...n-efficiently-repress-ebv-reactivation.90835/

The P2X7 receptor is a cation channel activated by high concentrations of adenosine triphosphate (ATP) and activates the NLRP3 inflammasome which can be suppressed by active B6 that requires zinc and also magnesium sulfate which does not. The P2X7 receptor also regulates β-cell proliferation/survival but seems few read that. https://forums.phoenixrising.me/thr...purinergic-therapy.52427/page-10#post-2438658 @serg1942

Riboflavin, vitamin B2, attenuates NLRP3, NLRC4, AIM2, and non-canonical inflammasomes by the inhibition of caspase-1 activity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7645791/​

Very interesting. Thanks so much for sharing these.

 

[cfs since 1998]

haha I've thought of doing something similar but I doubt it would work !

Well, just out of curiosity I just started doing it with olive leaf. I empty the capsule into my mouth, let it dissolve, and then gargle it. I think it is having a bit of an effect, but unless I'm willing to do it every hour for months (which doesn't seem practical) I don't think it will do much long term.

 

[Gzephyr]

Well, just out of curiosity I just started doing it with olive leaf. I empty the capsule into my mouth, let it dissolve, and then gargle it. I think it is having a bit of an effect, but unless I'm willing to do it every hour for months (which doesn't seem practical) I don't think it will do much long term.

Perhaps a stronger antiviral would be more effective? What effects have you notice?

 

[cfs since 1998]

Perhaps a stronger antiviral would be more effective? What effects have you notice?

It's hard to explain but I've experienced certain symptoms/side-effects on antivirals in the past. The olive leaf has produced the same ones, namely headache and fasciculations. The latter were confined to my face/jaw with the gargling technique I described.

 

[Gzephyr]

It's hard to explain but I've experienced certain symptoms/side-effects on antivirals in the past. The olive leaf has produced the same ones, namely headache and fasciculations. The latter were confined to my face/jaw with the gargling technique I described.

Very very interesting. You know what, I'm gonna crush up a Valacyclovir and dissolve it in water so I can gargle with it for a few minutes. Will probably try sometime over the next few days. I'll get back to you. I doesn't seem to difficult so it's worth a try I suppose

 

[cfs since 1998]

Very very interesting. You know what, I'm gonna crush up a Valacyclovir and dissolve it in water so I can gargle with it for a few minutes. Will probably try sometime over the next few days. I'll get back to you. I doesn't seem to difficult so it's worth a try I suppose

Haven't been here for awhile but it occurred to me a few nights ago that Valacyclovir has to be converted to Acyclovir by the liver. So the former probably will not work topically, but the older acyclovir might.

 

[Gzephyr]

Update: I saw a doctor a few weeks ago that's kind of half mainstream, half holistic if you get what I'm saying. She's a normal PCP for many but also offers nutrition advice, believes in treating leaky gut and other GI problems, will recommend supplements like NAC, resveratrol, lion's mane, etc etc etc.

Biggest thing of all, she believes me 100%, especially because I have physical symptoms when I'm off of valacyclovir like the mouth ulcers. She doesn't believe the CFS is psychosomatic like several doctors I've seen...

She thinks a lot of my symptoms are from this viral infection, probably EBV. The first thing she told me was to "get your tonsils out ASAP" because I get ulcers on my tonsils, and subsequently the rest of my mouth, within a few days of stopping VAL. She explained that EBV can live in the tonsils and it may be a viral reservoir that can't be dealt with unless I simply get them taken out.

I expressed my concern with the recovery process and she reassured me that I would be ok. I could get lidocaine pops and potentially prescription pain meds to easy the recovery.

I've been putting this surgery off because I hear the recovery is absolutely horrible but now I have a new perspective on it. I'm like 70% sure in my mind that I'll see some benefit but there's no way for me to know for sure until it's done.

There's also a chance the surgery could give me severe PEM and make me worse... it's really a tough call.

 

[Rufous McKinney]

She explained that EBV can live in the tonsils and it may be a viral reservoir that can't be dealt with unless I simply get them taken out.

Maybe this is true; my comment is I had my tonsils removed over 60 years ago.

I get the sore throat symptom commonly, and have at times thought EBV may live in my throat. How I can have a very sore throat like strep, and one hour later, have that subside: is very bizarre.

 

[Rufous McKinney]

There's also a chance the surgery could give me severe PEM and make me worse..

thats pretty guaranteed, but you may recover eventually and be Ok.

I feel for you having to decide such things. Very hard to know what to do.

Do they still use ASPERGUM? that was the pain relief I was given in 1963.