Removing tonsils?

[suevu]

My onset has been a series of throat infections (not viral, but strep probably), every few monts, till a last one big infection that triggered a lot of anxiety, and many neurological issues (very similar to PANDAS if not the same with the excepcion I am an adult). Also many antibiotics, etc...

I didn't have a lot of fatigue though. It worsened when doctors told me to excercise to recover fatigue and only made things worse.

My root canals got infected, during that time I was bedbound for months. When I removed all my root canals, I went from very severe to severe, could wake up a few hours a day. So there is a link in the mouth-throat- neck.

Got diganosed with CCI doing an upright MRI, but I'm trying to figure out what causes my CCI.

I had a big "clue" last year in november, I had a very small tonsil infection, (I mild at this moment and I was mild in November) that made me almost severe for 4-5 days, the infection did not require antibiotics and it was a weird infection, tonsils were a little bit more swollen than they are normally (probably 1 mm or 2), but enough to be severe.

After recovering my health recovered a little bit. I also have a contsant mucus or pus like (not pus) surrounding one of my tonsils, and they don't really look very well. Although I did an ASOT test that came negative, I still think I have something going on there.

Do you think removin my tonsils can be a good idea?

I'm considering laser or radi frequency but not general anaesthesia. What do you think?

 

[suevu]

Also there is a weird thing with my CFS, I don't have any gut issues at all, they resolved doing FMTs to never come back, I don't know what this can indicate. But my stool is pefectly bristol type 3 constantly.

Any ideas combining all these things? Could this point to just tonsils? I also have tinnitus and ears blocking and unblocking constantly.

 

[Strawberry]

I had my tonsils out about 20 years ago. I was normal again, for about a year. Then by a year and a half, I was back to where I was before surgery (sick and fatigue wise) and have continued downhill.

Also just re-reading, I have had tinnitus since birth. No change after tonsillectomy.

 

[suevu]

I had my tonsils out about 20 years ago. I was normal again, for about a year. Then by a year and a half, I was back to where I was before surgery (sick and fatigue wise) and have continued downhill.

Also just re-reading, I have had tinnitus since birth. No change after tonsillectomy.

Interesting.

How long did it take for you to recover after removing them? And what were your triggers to fall sick again?

Did/do you have teeth issues like Root Canals etc? It seems they are strongly related to CCI and ME CFS, I have seen in some root canals groups many people being not even aware of it have obvious ME CFS that dissapears when they get rid of them or their cavitations.

 

[Strawberry]

How long did it take for you to recover after removing them? And what were your triggers to fall sick again?

I really don't remember any more. I definitely have not had a root canal, my teeth are pretty healthy.

 

[suevu]

I really don't remember any more. I definitely have not had a root canal, my teeth are pretty healthy.

Mine were quite healthy too, but after the big sore throat had receding gums, infected RCs, and removing the RCs made me improve greatly, so thats why I think it all points to my tonsils as "zero" zone.

Have you considered adult PANDAS?

 

[Strawberry]

I also have receeding gums (EDS?) but my teeth are still considered fine. They check them twice a year.

I don't know what PANDAS is. Other than that cute fuzzy black and white bear, but that isn't what we are talking about.

 

[Strawberry]

Ok I just looked up PANDAS. While I could claim a tiny bit of OCD (I was supposed to be a classical concert pianist when I was young, so did try very hard to be a perfectionist) it isn't an issue I would normally say I have. I also don't have the tic disorder......

 

[geraldt52]

I had a tonsillectomy and bi-lateral sinus surgery 35 years ago, in search of a "phantom infection". My CFS symptoms did not improve significantly immediately after either surgery, but I did have a remission of my CFS symptoms about 4 years later, where I functioned at about 80% for a number of years. Since then I've been on a long steady decline. I have no idea what part, if any, either surgery played in my remission, but clearly neither was a long term answer.

FWIW, an adult tonsillectomy is not something to be entered into lightly. The post surgery pain and recovery were beyond horrible. I would get several opinions before going down that road. Perhaps they are better at the surgeries nowadays...

 

[IThinkImTurningJapanese]

Any ideas combining all these things? Could this point to just tonsils? I also have tinnitus and ears blocking and unblocking constantly.

I've used Pro-Dental with good results and am so glad I encountered your question. Pro-dental has changed their formula. The one I used had BLIS K12 and BLIS M18.

Numerous studies have shown that the use of the oral probiotics S. salivarius K12 and M18 may improve oral health through the reduction of cariogenic and periodontal pathogens levels in addition to other major health benefits. Probiotics regulate cytokine concentrations, which is the inflammation associated with red puffy gums. These strains also lower the crevicular fluid volume or the fluid that surround the inflammation.

Two types of S. salivarius bacteria found in the mouth may have benefits in the dentistry and oral care arenas — S. salivarius K12 and S. salivarius M18. S. salivarius produces three types of antimicrobial agents: Salivaricin A, Salivaricin B and Salivaricin 9 (1, 2, 3 and 4).

Commercially available BLIS K12 and M18 products contain antibacterial molecules that may offer preventative and remedial solutions to patients to attack the root of gingivitis and periodontal disease.

S. salivarius K12

S. salivarius K12 is a probiotic that has the ability to fight infections. It produces two significantly powerful proteins: the bacteriostatic peptide Salivaricin A and bactericidal peptide Salivaricin B. Both are referred to as “bacteriocin-like inhibitory substances” or BLIS. Studies show Salivaricin A and Salivaricin B attack invasive bacteria by colonizing in the oral cavity.

The colonization process prevents pathogenic bacteria from sticking to the host. The build of up pathogens create an imbalance in the flora environment and contribute to dental cavities, halitosis, sore throats and ear infections. The BLIS molecules Salivaricin A and Salivaricin B target and attack these pathogens. K12 communicates with specific cells in the mouth to excite them and increase the body's immune system. K12 also protects the ears, nose, mouth and throat against infection.

 

[Ian]

Did you have the bone debrided when you had your root canals removed? It's really essential that this be done otherwise infection frequently remains in the bone indefinitely after removal of these teeth.

 

[percyval577]

In one of the tooth threads someone told to have got pulled all teeth. But it didn´t help.

I personally think the symptoms are too autonomous and shouldn´t directly be an answer to any infection.

Possible may be, I think, that there can be some influence from this or that infection or maybe from this or that organ, but if this doesn´t reach the root of the illness, it wouldn´t have been worth to have done it.

 

[Slushiefan]

I also problems in the same areas ie jaw infection with significant bone loss after my wisdom teeth extraction, strep throat, receding and bleeding gums.

I had my tonsils removed, and after I stopped maintaining that area i.e routine gargling salt water, problems returned few months later.

I got pretty good relief in my gums and no further infection as a side affect after adding 600mg coq10 daily.

 

[Dechi]

I don’t have tonsils. I was born without them or they disappeared. It didn’t help me with not getting ME that’s for sure.

 

[overtheedge]

These two posts seem to be in a similar kind of ballpark as what you're investigating
https://forums.phoenixrising.me/thr...proved-by-treating-the-nasopharyngitis.48647/
https://forums.phoenixrising.me/thr...atment-occult-strep-infection-my-story.76909/

 

[suevu]

Thank you for your answers.

I'm considering now a saliva transplant, has anyone considered'?

Dont jump into your spouses/partners too quick, they have a very similar microbiome to yours, so we would need a very healthy donor, and probably drink lots of saliva or even spraying it into the nose to lower infllamation in that area for days or weeks or more?

What's your views?

This disease is microbe-related, some kind of autoimmune disorder, behim them all are microbes. The only way I see out of this hell and actually that have helped me is microbe therpay (FMT) that took me from a severe to mild status now. It's very hard to modulate, but I think the key is there.

I will open a topic on that.