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

[Gzephyr]

Update: finally getting the tonsillectomy done two weeks from now.

I saw a new ENT a few weeks ago and told him about the tonsil ulcers and mono-like sickess I get when I don’t take valacyclovir and that this all started after a battle with acute mono close to 5 years ago. I explained that I’ve never tested positive for another chronic virus like HSV and that EBV PCR labs come back positive only when I stop taking the VAL. His eyes got wide and he basically said “your tonsils are full of ebv and they’re causing all of your problems” before I mentioned “CFS” or even “fatigue.”

He explained that it was obvious because I mentioned that my very first symptom of reactivation after stopping the VAL is ulcers on my tonsils and swelling. Then comes the sick feeling and fatigue. Then comes countless mouth ulcers away from my tonsils. He thinks all of this happens because ebv infected a boat load of tonsil tissue and it replicates like crazy when I stop VAL.

SO, he says they need to come out. He will use “plasma coblation” to remove them, which apparently allows for a much smoother recovery. I’m super stoked about that because the only reason I’ve put this surgery off for so long is fear of extreme pain during my recovery.

I know that people have tried to improve their CFS by having their tonsils removed but it did not help them. Although, I’ve read about a few success stories which makes me optimistic. I think it makes sense for me given my history. Wish me luck !! I’ll be sure to give updates.

 

[cfs since 1998]

Update: finally getting the tonsillectomy done two weeks from now.

I saw a new ENT a few weeks ago and told him about the tonsil ulcers and mono-like sickess I get when I don’t take valacyclovir and that this all started after a battle with acute mono close to 5 years ago. I explained that I’ve never tested positive for another chronic virus like HSV and that EBV PCR labs come back positive only when I stop taking the VAL. His eyes got wide and he basically said “your tonsils are full of ebv and they’re causing all of your problems” before I mentioned “CFS” or even “fatigue.”

He explained that it was obvious because I mentioned that my very first symptom of reactivation after stopping the VAL is ulcers on my tonsils and swelling. Then comes the sick feeling and fatigue. Then comes countless mouth ulcers away from my tonsils. He thinks all of this happens because ebv infected a boat load of tonsil tissue and it replicates like crazy when I stop VAL.

SO, he says they need to come out. He will use “plasma coblation” to remove them, which apparently allows for a much smoother recovery. I’m super stoked about that because the only reason I’ve put this surgery off for so long is fear of extreme pain during my recovery.

I know that people have tried to improve their CFS by having their tonsils removed but it did not help them. Although, I’ve read about a few success stories which makes me optimistic. I think it makes sense for me given my history. Wish me luck !! I’ll be sure to give updates.

That is very fascinating. I'm considering seeing a new ENT as well. My last one said mine are slightly enlarged but did not buy my EBV theory.

Keep us updated. Do you plan on taking Valacyclovir before/after the surgery?

 

[Gzephyr]

That is very fascinating. I'm considering seeing a new ENT as well. My last one said mine are slightly enlarged but did not buy my EBV theory.

Keep us updated. Do you plan on taking Valacyclovir before/after the surgery?

The first ENT I saw a few years ago was similar to yours. Though, he said would take my tonsils out but he didn’t know much about the ebv situation. Didn’t go through with it because fear of a horrible recovery.

Yes, gonna continue taking it until I’m healed up from the surgery which will be around a week. The doctor suggested I taper off one pill every few days when ready.

 

[Strawberry]

Best of luck! Tonsillectomy eliminated my CFS symptoms for about a year. By a year and a half I was back to where I was before surgery. This was probably 20-25 years ago.

After my symptoms came back, I told my dr my strep throat had returned, which of course was met with a defiant “that can’t happen.” I got strep symptoms for about 10 years afterwards. For some reason I no longer get it.

Do keep us posted!

 

[Rufous McKinney]

which of course was met with a defiant “that can’t happen.”

doncha love that one? Its wonderful being a scientific exception!

 

[Gzephyr]

Best of luck! Tonsillectomy eliminated my CFS symptoms for about a year. By a year and a half I was back to where I was before surgery. This was probably 20-25 years ago.

After my symptoms came back, I told my dr my strep throat had returned, which of course was met with a defiant “that can’t happen.” I got strep symptoms for about 10 years afterwards. For some reason I no longer get it.

Do keep us posted!

I appreciate you sharing your experience. I’m sorry you had a relapse afterward.

So you had strep hidden deep in your tonsils? I saw another thread here where someone’s CFS symptoms disappeared after they had their strep ridden tonsils removed.

 

[Wayne]

Then comes countless mouth ulcers away from my tonsils. He thinks all of this happens because ebv infected a boat load of tonsil tissue and it replicates like crazy when I stop VAL.

Hi @Gzephyr -- So it sounds like the EBV concentrations may not be confined to your tonsils, but perhaps your entire mouth and gum tissue? Or even elsewhere in the body? My first thought was, "why not try ozone therapy", especially since I've heard that tonsils play an important role in our health and they may be worth saving if you can get rid of the infections.

I've successfully used ozone for various oral infections, and have found it to be almost miraculously effective. I can't help but think it could quickly reduce viral loads in your tonsils if you were to try it. You can purchase ozonated hemp capsules, and just hold it in your mouth (actually good for enamel). Or you can ozonate water with a simple $15 ozone machine and hold it in your mouth. I did a quick search on the AI website Perplexity, asking it about using ozone to avoid a tonsilectomy. Here's what it said:

Are there reports of people using ozone therapy to treat tonsil troubles or to avoid a tonsilectomy?​

Sources
Direct Ozone Gas Infiltration to treat tonsilloliths in a 12-year-old ...
ozonetherapyglobaljournal
Why More and More People Try Oxygen-Ozone Therapy | ADT
alternativedisctherapy
A preliminary evaluation on the efficacy of ozone therapy in the ...
pmc.ncbi.nlm.nih
Answer
Yes, there are reports of people using ozone therapy to treat tonsil problems and potentially avoid tonsillectomy. Ozone therapy has been explored as an alternative treatment for various tonsil-related issues179.

Applications of Ozone Therapy for Tonsils​

1. Tonsilloliths: A case report describes the use of direct ozone gas infiltration to treat tonsilloliths in a 12-year-old female. The treatment involved three biweekly injections of 2ml ozone gas at 10 μg/ml concentration on each tonsil for six weeks. A marked reduction in tonsilolith production was observed after the initial dose1.
2. Tonsillitis: Ozone therapy has been used to treat both acute and chronic tonsillitis. The treatment protocol typically involves:
   • Intra-tonsillar infiltration: Using a 30G needle to inject 2.5 mL of ozone at concentrations of 10-20 μg/mL into the anterior and rear pillars of both tonsils7.
   • Ozonized oil application: Applying ozonized oil twice a day until symptoms remit7.
   • Ozonized water or saline: Gargling with ozonized water or saline solution7.
3. Alternative to Tonsillectomy: Some dental practices offer ozone therapy as a potential alternative to tonsillectomy. The treatment aims to disinfect tonsil tissue, kill bacteria, and promote healing910.

Mechanism of Action​

Ozone therapy is believed to work through several mechanisms:

• Bactericidal effect: Ozone can kill harmful bacteria in the tonsils7.
• Immunomodulatory action: It may help regulate the immune response7.
• Detoxification: Ozone can aid in removing toxins from the affected area7.
• Improved circulation: The therapy may enhance blood flow to the tonsils9.

While these reports suggest potential benefits of ozone therapy for tonsil-related issues, it's important to note that more research is needed to establish its effectiveness and safety conclusively. Patients considering ozone therapy should consult with healthcare professionals and consider it as part of a comprehensive treatment plan.

 

[Wayne]

And then there's the possibility of "swabbing"...

Is there a "swabbing" technique that's been purported to help drain tonsils of infections?

Answer
Yes, there is a swabbing technique that has been used to help drain tonsils of infections, although it's not a standard medical procedure. This technique is sometimes referred to as "tonsil stone removal" or "tonsil cryptolysis."The technique typically involves:

1. Using a cotton swab or soft-bristled toothbrush to gently massage the tonsils3.
2. Applying light pressure to the tonsil area to encourage drainage of any trapped debris or pus3.
3. Swabbing or brushing in a circular motion around the tonsils and crypts (small pockets in the tonsils)3.

It's important to note that while this technique may provide temporary relief for some people, it is not a substitute for proper medical treatment of tonsil infections or abscesses. For severe infections like peritonsillar abscesses, medical professionals use more invasive techniques such as needle aspiration or incision and drainage125.If you're experiencing persistent tonsil problems, it's crucial to consult a healthcare provider for proper diagnosis and treatment. Self-swabbing techniques carry risks such as:

• Potentially spreading infection
• Causing injury to the delicate throat tissues
• Triggering the gag reflex
• Masking symptoms of a more serious condition

For diagnosed tonsil infections, healthcare providers typically recommend antibiotics, pain management, and in some cases, surgical intervention like tonsillectomy6.

 

[Wayne]

Additional Natural Remedies for Tonsil Stones​

1. Probiotics: Consuming probiotic-rich foods like yogurt can help kill the bacteria in tonsil stones and promote overall oral health2.
2. Raw carrots: Chewing raw carrots naturally increases saliva production, which can help reduce tonsil stones2.
3. Apples: The acidic nature of apples may help fight bacteria associated with tonsil stones2.
4. Essential oils: Some people use essential oils for their potential antibacterial properties, although caution should be exercised when using them orally2.
5. Honey gargle: Boil water, add 2 tablespoons of honey, allow to cool, and gargle to help kill bacteria2.
6. Tongue scraping: Using a tongue scraper may help remove more bacteria from the mouth, potentially reducing tonsil stone formation2.
7. Oil pulling: This Ayurvedic practice involves swishing oil (such as coconut, olive, or sesame) in the mouth for about 10 minutes to improve oral hygiene24.

It's important to note that while these natural remedies may provide relief for some people, their effectiveness can vary. If tonsil stones persist or cause significant discomfort, it's best to consult a healthcare professional for proper evaluation and treatment.

 

[Mary]

@Gzephyr - I had repeated strep as a kid and had my tonsils removed at age 10. This didn't prevent me from getting strep later on, nor did it prevent EBV infection and ME/CFS.

I don't know how or if my ME/CFS is related to EBV - no one know the answer to this. I did try valtrex but it gave me insomnia (!) If insomnia is a possible effect of a drug or supplement, I'll get it! (I also have HSV-6, coxsackie B, a few others I think)

I also had strep off and on for several years in the early years of ME/CFS (20+ years ago) but no longer seem to get it, like @Strawberry - it would be nice to know the reason for this . . .

I hope the surgery helps you - do keep us posted

 

[Strawberry]

I appreciate you sharing your experience. I’m sorry you had a relapse afterward.

I think my advice to you would be to take as much stuff that helps people as you can. Maybe it will stop the infection coming back? I’d suggest LDN and GSE. I’m certain there are others.

 

[Gzephyr]

I’m 16 days post tonsillectomy.

The recovery pain never went above 6/10. Most of the time, it was only like a 3 or 4 out of 10. All of this was gone by day 8 and I was back to eating normal food. Very very very easy. I was so worried about intense pain but it turned out that my doc was right. It just felt like a viral sore throat at its worst.

As for how I’m feeling now, I’m still very fatigued from the surgery. This is apparently normal after this surgery even for healthy adults. The surgery sites are still healing and draining my energy. I feel like I’ve been hit by a truck at the end of the day. It’s not even PEM but rather a whole body fatigue that I didn’t usually get pre-surgery. It’s gotten better over the last week so that’s promising. I’ve read that it can take up to a month to go away but I’m prepared to wait 6 weeks or so before I start worrying.

I’ve seen some minor improvements in my CFS but I’m honestly not far out enough to say if this is going to be a win or bust. I don’t really think I’ve had much PEM since the surgery. Just the new fatigue like I mentioned. Still very foggy headed, though.

 

[Strawberry]

Keep us posted!

 

[DonPepe]

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 !

Don’t bother

I got a tonsillectomy a couple of years after I got glandular fever in the hope it would make me feel better. It didn’t. I’m still bedridden 38 years later.

 

[Gzephyr]

Hi all

I was most definitely feeling better for about a week and then I got a bad case of Covid. So, there’s no telling how I’m going to feel when it’s finally gone. Mostly over it now but still running a low grade fever and feel very sluggish. Wish me luck. Horrible horrible timing