chronic lingual tonsillitis

Hi Peter.  I have no answers.  Just had another bout of CLT and Pharyngitis.  I took antibiotics day 10 which seemed to help. Then it got worse so took a second lot which seemed to help. 

My blood tests for Sjogrens syndrome were half positive and half neg. that would just indicate dry mouth as a factor. (Medication can do that anyway). 

I can’t believe how painful it is. I take Tramadol sr 200 mg twice a day for my back but it does nothing for my throat pain. 

I saw Gastrointerologist and he said i did not have silent Gerd - Gord.  (Or LPR )or general reflux. The former is indeed rare at 1%. 

I will see another ENT next year. 

I had it once post surgery the tube may have been a factor. ? But i was sick. And i feel really unwell with it. 

Am having a back tooth out to see if i can rid myself of toxins. 

Sorry I have no answers.

It seems odd mine seems to last 12 weeks. Approx. twice a year is half a year. If i got sick a 3rd time. I hate to think.  

I had sinus surgery in 1993 for deviated septum. But it was not successful. So I would wonder if i had that surgery if it would help. I did start to think about post nasal drip. But i am not making much mucus now when i get sick. 

There seems to be a few of us wondering what to do. 

The lingual tonsils house the immune system.  My blood tests show a faulty immune system.  But how to boost my immune system?  I need access to anti virals. Next year I will persue one of Melbourne’s teaching hospitals for answers.  

I hope it goes away and does not come back for u.  I have had years of it. I don’t know anyone personally with CLT. 

The Gastrointerologist said that my tongue with holes in it at the back he has seen before. Means food get stuck in there and causes bacteria in my mouth. The ENT did not know that. But what causes it i don’t know.  

He also suggested eating organic food and going back to basics. No processed food.  And going going gluten free.  Not sure if it would help. 

I used to think spicy food soothed my throat now I can’t eat spicy food at all.

Is there any change in the roof of your mouth? Texture?

When i wash my hair shampoo gets in my throat and burns it. But when I don’t have CLT it’s normal. 

Your ent sounds good. The metallic taste is interesting.  Food tastes different to me.  I had some change On the roof of my mouth which seemed consistent with Gerd. So i took somac in morning. Then evening. and Ratadine 2 a day. So 3 tablets for reflux. Gastrointerologist said to stop taking them.  

Sinus surgery can be quite painful. I think if u look at it like tonsillitis it helps.  Lots of ppl get frequent bouts of it that last a long time and look at why?  In your search put post surgery CLT. See what comes up. ?

Infection post surgery.  Surgery is a stressor on the body.  As your lingual tonsils are host to your immune system they may be attacking something foreigh. 

Have you had a mouth swab? Looking for bacteria ? Blood tests looking at naturak killer cells. T cells. B cells. T suppressor cells. Etc 

Strep. Swab

ENT. 1st one said Gerd silent reflux. The endoscope wont go down my right hand nostril.  As it has deviated septum (still). Is that the surgery you had or did u have sinuses drained - were they infected.??  

ENT. At same place. Diagnosed Chronic lingual tonsillitis.  He had 2 other cases. They were both on low dose antibiotics for Roaccea.  Then I come along not with Roaccea but another auto immune disease. He suspects use of low dose antibiotics or faulty immune system. 

3rd visit. He said infection was gone. But they were still inflamed.  And said my mouth and nose were extremely clear in fact a little too clear. I still think i have post nasal drip a bit.  He said i had a rather unusual moth eaten tongue.  He forgot to write to GP. She had to email him. 

 My GP is supportive.  

Is your voice affected? Mine is diring a bout. And talking is painful and an effort. 

Re pnd. I slept sitting up and took antihistamine to dry up mucous.  And sipped on drink all night. 

I did try prednisilone for inflammation (forgot that until now).  It may have helped.  

Another way of looking at it is if you had infected sinuses and post nasal drip dripping into your throat it would affect your lingual tonsil. Which is like a sea of cells. 

Let me know results of ct scan. 

HI Rhonda, Could you please let me know what happened with your pain? I have half positive, half negative results for Sjogren's. Right now I'm on antibiotics to treat an infection of throat(lingual tonsils as I don't have tonsils). I'm so worried as the pain is mainly right-sided it radiates to my head and ear. 

Christine

I had forgotten my password. But saw this and retrieved it.  I am half neg half positive to Sjogens Syndrome.  The lady that runs on line Sjogrens Australia. Said by the time i get a diagnoses I would be very sick.

I have not got clt at the moment so it has gone away.  Again. It takes 12 weeks and goes.  My mouth is constantly dry.  I am dealing with back pain. And applied for health care card.  I need to see a rheumatologist re Sjogrens. Not done that yet. 

My GP Treats CLT with strong antibiotics- 2 doses. I don’t know if they work or it’s time that heals.  Dreading the next one.  But I don’t have PND anymore.  

Rhonda. Melb. Australia 

Thank you for replying. I have back pain as well, i have so many other symptoms and Doctors are not helpful as I am inmy 30s. Right now I’mtaking my antibiotics for lingual tonsil infection(they just guessed) after suffering from swollen yellow tonsils for less than a year.  And my doctor says that the infection doesnt have any relation to my chronic pain. He says i got it last week only. But I had these swollen tonsils with yellow substance inside for months. 

I have also seen rheumatologists for my Sjogren’s but they dont think I have it. I’d be more peaceful to know that’s an autoimmune disease and would probably go to a nathuropathic doctor. But I am scared this is somthing else. I also have lymph nodes swollen in my neck. If you find out anything please let me know. For now take care

I have had ME/CFS post virally since 1998.   I had sore throats that lasted 6 weeks. Then 8 weeks. Then 12 weeks. 2 colds a year has me extremely sick for half a year. The pain is not touched by the tramadol sr 200 which i take twice a day. I had back surgery which has left me worse off. 

I have no tonsils. They were removed when i was 5yo. 

So lingual tonsil is a sea of cells at the back and also house the immune system. (A reason doctors don’t like removing palletine tonsils today. ) a lot of ppl suffer tonsillitis in the same way.  I waa sent to an EnT after complaining of sore throat for many many years. Which is not CFS related.  I have blood tests which show an immune dysfunction. The endoscope showed the lingual tonsillitis.  

I have had 2 scopes now. The ent spoke of boosting the immune system.  And has 2 other patients with it, both women with auto immune illnesses. They have Roscea (they don’t know each other ). What the 3 of us have in common is the use of low dose antibiotics.  I came off them.  My GP said the treatment for CLT is double dose antibiotics or removal. We have found. No one to remove them.  I returned to ENT again. He commented on the lack of saliva in nose , mouth. But i also have it in ears. Eyes. And have a very high ana.  My tongue has holes in them. Which explains why I can’t tolerate chilli or spicy food. Gastrointerologist suggested that the holes are a breeding ground for bacteria.  So last time I got sick gastro doc suggested a diet of  no wheat. Or gluten free. Organic food. Expensive.  Not sure it helped.   GP suggested 3 days in bed when i get a cold. Treat with double dose abx twice a day. Lots of rest. Soup. I managed to get over it in 8 weeks. Lots of rest. Fluids. Pain can affect immune system. 

I hope some of these things help you in some way. It’s supposedly rare 

Thank you for replying, Rhonda. This is an amazing information for me. What I understand so far that having palatine tonsils out is evil. I had mine removed at 20 for having an unexplained hairloss. So now I see, my lingual tonsils took the garbage of the body on them. And the worst part is that they are located inside the throat. So a little swelling goves so much discomfort and can be a reason for choking. 

I loved the idea of immunotherapy. I have heard about it but have no idea how it is done. I think I must see a nathuropathic doctor, but it will cost a fortune to me. I’m located in Canada. 

Recently I narrowed my diet so much because I fear I hve allergies. Basically I live on rice and meat, I cant have apples or banans, nothing sweet,as I noticed they trigger swelling. 

Your advice is really helpful here. If I find out anything helpful soon, I’ll post here.

Thanks Christine

Rhonda, I forgot to ask you. Do you have an ear pain because of the lingual tonsillitis? I find my right is is full all the time and sometimes hurts together with the right tonsil. No infection has been found in the ear.

 

I have I have a very narrow ear canal.  My ears feel blocked when i get a cold and take ages to unblock.   You mention sides.  The lingual tonsils is across back of throat. But I at times had more times that it was worse

on one side.    Once I got clt after dental work. An other time after surgery. It could be the tube affected it. ?? The first ent I saw diagnosed me with Gerd (Gord). The 2nd. 3rd ent in same business. Said sHe had probably never seen a case of it before. 

Also having glands up is a good sign that your immune system is working. 

How ow long have you been sick?  Have u had it before. Is it post viral onset??

I had sinus surgery in 1993 they said it was not successful. I also need another sleep study done.  I have lots of allergies. Food and air Bourne 

 

Mine is a long story. I started gerting weird symptoms last year during this time. Firts I was run down with a cold sore and then I got tinglings starting from my head down the toes, severe back pain., severe nausea. The symptoms went away but the pain on the right side of my throat together with ear remains to this day.  I also get low grade temp 37.5 during the day and nausea. 

It might have been a virus, bacterial infection. I also had several dental works done back then. Who knows. I’m so scared this might be something serious. 

Sometimes I wonder if the swellings are from extreme dryness of mouth and throat? 

my iPad stuffs up.  I definately have had a couple of times it was one sided. There are lots of glands in our bodies thst help fight infections.  Gargle with salt in water is a good remedy to try.  Honey (Manuka ) is good for immune system.     Fat on meat is important also. So I started using it in soup. Eg lamb shanks   Chicken skin on.  We don't normally have this sort of meat. In fact I eat littke meat. But love Veg and fruit. 

 

And I have seen 3 ENT doctors, one of them told me to have my partially impacted wisdom tooth out. The 3rd one said the one sided pain is usually from Laringitis. But this past week my throat was closed it was so swollen. So right now the antibitics did their work and the swelling is down, but the pain is still there. I think I will get the infection back if the cause of it is unknown.

Thanks

Christine

I have Manuka honey bought it from New Zealand. But I seem to be sensitive To it. I’ve become so sensitive to food. I eat lots of it but less veggies and fruits. The thing is that I cannot digest fatty meat. Whenever I eat greasy meals I immediately get upset stomach. 

 I wonder if you walk a lot or exercise? It is good for busting immune system.