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

[Gzephyr]

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.

This happens to my throat, too. One hour it's very red and slightly painful and then it looks almost normal the next hour. Would it be outlandish to say that our immune systems are trying to attack latent EBV there?

 

[Gzephyr]

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.

It's very scary. No clue what I'm going do to.

I'm not sure what ASPERGUM is but I'm going to try to ask if they prescribe opioids before I even have the surgery done. I'd prefer not to have feel the pain from PEM AND a throat full of glass for a couple weeks

 

[Rufous McKinney]

Would it be outlandish to say that our immune systems are trying to attack latent EBV there?

makes more sense, what your saying...perhaps I was thinking the EBV reactivated, but instead, its our jacked immune system arriving to try to go after it. And that could vary hour by hour, I imagine.

What I remember from being the sick kid: white blobs on my tonsils. Probably strep. Frequent and often. Did my parents put me on antibiotics all the time? I somewhat doubt it, and cannot ask them. I recall my Mom rinsing my throat alot with probably warm salt water....so by ten, I had my first Mononucleosus event, the impossible Kissing Disease starts up. And I didn't kiss anyone...

 

[cfs since 1998]

This has crossed my mind, but there are enough people without tonsils that have ME/CFS that I'm not sure it will help. It seems like everyone responds differently to different treatments. If the recovery period was not so miserable, I might try it.

 

[Rufous McKinney]

I'm not sure what ASPERGUM

aspirin in chewing gum.

I"d wake up; swallow; scream; grab the gum. Worked fast.

But my vote is max Opioids for about 5 days should take care of it

DARN: the gum they do not make any longer, stopped in 2006.

 

[Gzephyr]

makes more sense, what your saying...perhaps I was thinking the EBV reactivated, but instead, its our jacked immune system arriving to try to go after it. And that could vary hour by hour, I imagine.

What I remember from being the sick kid: white blobs on my tonsils. Probably strep. Frequent and often. Did my parents put me on antibiotics all the time? I somewhat doubt it, and cannot ask them. I recall my Mom rinsing my throat alot with probably warm salt water....so by ten, I had my first Mononucleosus event, the impossible Kissing Disease starts up. And I didn't kiss anyone...

It may have reactivated, who's to say without proper blood work? Have you tested for ebv recently?

Yep that sounds a lot like strep. I assume that's why your tonsils were taken out?

 

[Rufous McKinney]

This has crossed my mind, but there are enough people without tonsils that have ME/CFS that I'm not sure it will help. It seems like everyone responds differently to different treatments.

we could do a poll, but we know how those go.

Clearly everybody around here, if their tonsils are now removed/ didn't exactly get well afterwards.

My History: every time I got Mononucleosus, "impossibly" they'd come up with some procedure so first they took my tonsils, then they took my appendix. I had pneumonia/and MONO...in between those two things, and my parents were sending me back to school, and I said: but I still have this fever of over 101?

In hindsite, I imagine it wasn't fun being the parent of a kid with severe food allergies and lots of medical problems. My parents were probably fed up with doctor trips, and didn't bother taking me in.

 

[Rufous McKinney]

It may have reactivated,

I say that because I've noticed the sore throat vanish quickly. It seems like a reactivation would last for more time.

 

[Gzephyr]

This has crossed my mind, but there are enough people without tonsils that have ME/CFS that I'm not sure it will help. It seems like everyone responds differently to different treatments. If the recovery period was not so miserable, I might try it.

The clear case of viral reactivation that involves my tonsils is the big reason why I would consider it. I've read a couple cases of people who had them out and had their reoccurring EBV completely go away. Not sure if they had ME/CFS or just mild chronic ebv. I need to do a lot more research and perhaps get in touch with these people. I found them on the EBV facebook forums so not sure how reliable their statements are...

 

[Rufous McKinney]

I assume that's why your tonsils were taken out?

I had MONO. This was so long ago, EBV wasn't KNOWN yet.

When I was ten, I don't remember the lead up well.

When I was 15, I went to the doctor sick on Monday. Upon trying to leave the office, I opened the waiting room door, and it was a typical summer 110 degrees. I fainted.

I recall the doctor examining me, and asserting an appendix issue which he entirely made up. Back on Wed am, they proclaimed an emergency, sent me in against my will. It got worse from there.

Interesting how different we are, between Ten and Fifteen.

 

[Gzephyr]

I say that because I've noticed the sore throat vanish quickly. It seems like a reactivation would last for more time.

That's true. Certainly sounds like a fluctuation in your immune system attacking your throat. Whether that be because its trying to attack latent ebv or a completely unrelated reason

 

[Gzephyr]

I had MONO. This was so long ago, EBV wasn't KNOWN yet.

When I was ten, I don't remember the lead up well.

When I was 15, I went to the doctor sick on Monday. Upon trying to leave the office, I opened the waiting room door, and it was a typical summer 110 degrees. I fainted.

I recall the doctor examining me, and asserting an appendix issue which he entirely made up. Back on Wed am, they proclaimed an emergency, sent me in against my will. It got worse from there.

Interesting how different we are, between Ten and Fifteen.

Oh wow that's awful. Do you think that impacted your health for the long term? I assume you've had CFS symptoms since all of this?

 

[cfs since 1998]

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.

What do these ulcers on your tonsils look like?

I will note that TAF is supposed to do a better job of targeting lymph tissue. This probably includes tonsils, but I can't find anything to confirm this. But if true, maybe that's why you have flared on TAF, even though you are already taking Valacyclovir (refering to the other thread).

 

[Rufous McKinney]

Do you think that impacted your health for the long term? I assume you've had CFS symptoms since all of this?

I was always sort of not as healthy and vigorous as normals, but I was doing everything my friends were. My vegan years demonstrated that didn't work for me.

I got impossible Mono round IV, in graduate school. The despicable doctor, had retired. The new doctor gave me prednisone and I stayed home from school for two weeks somehow, and went on walks and hikes every day. A -B plus messed up my GPA.

I was mild for decades and worked full time. Work got more and more stressful as I got less and less able to do the forty hour thing. Blurred vision ended long drives to meetings. I was able to last primarily because I was really good at my job, and could self direct my activities. I could sometimes lie down to read phone book sized reports, for instance. I could avoid The Office.

There is a federal program that can allow you to use sick leave, self directed, for pacing. That really helped as I could just stop working at 3 pm on a bad afternoon.

Otherwise, employer wants Doctor Notes. Phone calls at 8 am: not working today. If I'm sick, I"m trying to SLEEP, not get up and make phone calls that say: I am SICK.

 

[Gzephyr]

What do these ulcers on your tonsils look like?

I will note that TAF is supposed to do a better job of targeting lymph tissue. This probably includes tonsils, but I can't find anything to confirm this. But if true, maybe that's why you have flared on TAF, even though you are already taking Valacyclovir (refering to the other thread).

Attached is a pic I found on google but they look pretty much like the regular canker sores I get elsewhere in my mouth. Not once have I gotten an ulcer on my tonsil unless I'm in a viral flare. They seem very restricted to only when I'm off of Valacyclovir

Yep, I think it's been confirmed in studies that TAF enters lymphatic tissue fairly well. That could be a reason why I flare up when taking it alongside VAL.. BUT I still get these ulcers while taking TAF and come off VAL. Even after months on it. I was very disappointed when I realized this

Edit* I removed the attachment and will replace with this link so you don't have to download anything lol https://www.google.com/search?sca_e...ih=945&dpr=1#vhid=qXVoJyfvZFSD6M&vssid=mosaic

 

[Gzephyr]

This is what my mouth pretty much looked like when I was off of Valacyclovir for 2 weeks..

https://www.reddit.com/r/CankerSores/comments/e44dka

 

[Gzephyr]

I was always sort of not as healthy and vigorous as normals, but I was doing everything my friends were. My vegan years demonstrated that didn't work for me.

I got impossible Mono round IV, in graduate school. The despicable doctor, had retired. The new doctor gave me prednisone and I stayed home from school for two weeks somehow, and went on walks and hikes every day. A -B plus messed up my GPA.

I was mild for decades and worked full time. Work got more and more stressful as I got less and less able to do the forty hour thing. Blurred vision ended long drives to meetings. I was able to last primarily because I was really good at my job, and could self direct my activities. I could sometimes lie down to read phone book sized reports, for instance. I could avoid The Office.

There is a federal program that can allow you to use sick leave, self directed, for pacing. That really helped as I could just stop working at 3 pm on a bad afternoon.

Otherwise, employer wants Doctor Notes. Phone calls at 8 am: not working today. If I'm sick, I"m trying to SLEEP, not get up and make phone calls that say: I am SICK.

Sounds like you've had a pretty rough go. Sorry to hear you've delt with this stuff for so long. That federal program sounds like it was excellent for you. Thanks for sharing !!

 

[cfs since 1998]

This is what my mouth pretty much looked like when I was off of Valacyclovir for 2 weeks..

https://www.reddit.com/r/CankerSores/comments/e44dka

Could you have HSV inside your mouth and on your tonsils? Could you have one of the sores biopsied to confirm if it is EBV or another virus?

 

[Gzephyr]

Could you have HSV inside your mouth and on your tonsils? Could you have one of the sores biopsied to confirm if it is EBV or another virus?

I’ve had my ulcers swabbed for herpes 3 or 4 times and they’ve all come back negative. This was shortly after a flare up. However, I’ve had positive EBV PCR tests that were performed at the same time as the herpes swab

 

[Slushiefan]

I had full tonsillectomy, in the hope my fatigue was rooted in a difficult to diagnose sleep disorder eg sleep apnea or Upper airway resistance syndrome (a similar condition). Really, in hindsight, I was grasping at straws hoping *something* would help the crushing fatigue.

My testing of EBV titres were also very high, indicating EBV as a cause for my fatigue.

The tonsillectomy did nothing to help, at all. My EBV titres remained elevated, fatigue remained constant, and I actually did not have a sleep disorder to resolve in the first place. The only benefit was reduced snoring (which wasn't that bad to start with).

My take is CFS patients are better off to keep surgical procedures off the table in attempts at resolution of CFS.

Now, if you have diagnosed sleep disorder that a tonsillectomy is known to help, and you're thinking that just maybe it might have some effect on your fatigue, your in a good place to proceed with the surgery. But keep your expectations low, because sleep disorder related fatigue is just peanuts compared to the fatigue CFS patients face - meaning that even if you resolved a serious sleep disorder, you're barely going to budge your fatigue levels as long as the cause is CFS.