chronic lingual tonsillitis
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here we go again. i am on day 14 of thsi painful condition. that usually lasts about 14 days. i have a mild cold. i dont blow my nose. i have post nasal drip for sure. but its not that bad.
i did read that, can cause Gerd. i have tried the treatment for Gerd. Somac did not work or Nexium.
i have had thrush oral tablets. just to cover all bases.
i am on strong antibiotics for 10 days. 2 a day. no improvement at all.
maybe last time i took them as i was getting well or it had become bacterial .it appears this is viral. time will tell. wont it.
GP said to go back to ENT if this does not work. I am having a day at home today in my pjs. GP said to ahve 3 days in bed. but that is impossible. when you have a home to run and things to do. husband does a lot to support me.
i do feel unwell. weak and hot and cold but my temp was normal for me.
my bloods do show immune dysfunction. i see another doctor end of July.
ENT said to boost my immune system.. well i have really tried.. i am out of ideas.. i will see what the other specialist says in July. .i just have a few chronic illnesses too many.. and it costs heaps..
my husband and i are about to retire. he made a snide remark about my medical probs. costing so much. BUT i dont smoke a pkt of cigarettes a day. and i dont drink 4 bottles of wine a week.
ideas welcome. i absolutely hate this. i find it really embarrassing saying i cant come cos i ahve a sore throat.. ( only a sore throat or again. are the comments i get ) it will be september if it is 12 weeks. i have had it for 6 weeks and then 8 weeks .. it has got worse over the years.
and remember the first ENT who use the endoscope did not diagnose it. but said it was red.. she had never heard of it.
the second ENT a bit older.used the endoscope again and diagnosed it. . did know about it. my GP had to stand on a chair to see anything.
ENT said he has 3 patient with CLT and all have auto immune diseases.
3 of us ladies.. surgery is the next option. but what is there to stop the pain from appearing else where.. Eg. pharynx. larnyx
bad timing. very fed up. my dogs bring me happiness.
Rhon in melb Australia age 61yo. female
0 likes, 22 replies
rhonda1956
Posted
rhonda1956
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Ia antibiotics. Penicillin V 500mg. ( box of 50)
Dose is 2 in morning 2 in evening.
But i took 1 + 1 (it ckeared sinus infection)
I misread the pkt. Take 2 tablets twice aday.
The GP said 10 days. I wondered why I had so many left.
So today I start 4 per day. Hopefully it will work.
GP said if that did not work To go back to ENT for surgery.The only way u can see this condition is with a tube up nose into throat. One nose is too small to get in.
I have been suffering for years. And not diagnosed as they say nothing wrong with throat. I am constantly sick lasting 12 weeks a year. Times 2. Pppl dont get how hard it is to deal with.
I got to sleep at 4am until 9am. It hurts to talk. Tramadol doed not cover pain!
Rhon in Australia
rhonda61691 rhonda1956
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Trouble sleeping
rhonda_04 rhonda1956
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15th August. My cold has been gone awhile but throat pain remains. I have had a lot of antibiotics. Which mostly helps on my sinus pain.
ENT says it's chronic lingual tonsillitis- it's rare and lots of ENT's may not have seen it.
The pain is not touched by the Tramadol i am on for my back.
After the endoscope the numbing solution dropped into my throat. I had a few minutes of no pain in my throat.
GP rang me tonight and suggested Sjogren's Syndrome - Disease. I read about it. I could tick all the boxes. It does have dry sore throat as a symptom.
but this definitely starts each time with a cold. Perhaps the post nasal drip onto lingual tonsils has caused problem.
I am surving on little sleep 3 hours plus another 2 if i am lucky.
I need to sip fluids all the time.
it hurts to swallow. Some food is hard to swallow. Soup is best. A lot of things make it worse. Eg toothpaste. It stings. Cold air hurts.
I had bitter taste in mouth. I put a cotton (q tip) bud at back of tongue and ut stung. (I read someone else did it in here). Over the last few years i have not been able to eat chilli or thai food. I thought I was allergic to it. But the back of my tongue is a mess. And is sensitive. There was no infection there. So no more antibiotics.
Still got pain.
Have been treated for silent Gerd /Gord. With somac. For a long time. So I don't think I have it.
But mucous can cause Gerd. Interesting.
But I do find watching what I eat helps. Pepper. Lemon juice all aggravate the pain.
peter101253 rhonda1956
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rhonda1956 peter101253
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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.
rhonda1956
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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.
peter101253 rhonda1956
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Will wait for CT result and then see ENT again who has not known what to do before this, I had surgery on my sinuses in August, maybe damage was done to my lingual tonsils then. I also have a very bad metallic taste in my mouth which is noticeable (my wife), so very frustrating, my GP has given up, anyway, hopefully will find a solution soon.
Kind regards
Peter
rhonda1956 peter101253
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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.
rhonda1956 peter101253
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ebvreactivated rhonda1956
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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
rhonda61691 ebvreactivated
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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
ebvreactivated rhonda61691
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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
rhonda61691 ebvreactivated
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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
ebvreactivated rhonda61691
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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
ebvreactivated rhonda61691
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rhonda61691 ebvreactivated
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rhonda61691
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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
ebvreactivated rhonda61691
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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?
rhonda61691
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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.
ebvreactivated
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Thanks
Christine
ebvreactivated rhonda61691
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I wonder if you walk a lot or exercise? It is good for busting immune system.