Chronic Lingual Tonsillitis AGAIN

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I have had trouble logging in. And it goes to my junk mail. 

Here we go again was my last post.  

I have had 5 months of being ok. Got a virus. Pfft. CLT again. 

Week 2 done. So painful. 

Please note these are  not Paletine tonsils that your doc can see. These are a bunch of cells at back of throat. Often probs where pharynx. Larynx are seen by ENT.  I have had two endoscopes at same place.  The first ent. (Young) said it was gerd.  Gastrointerologist said its not.  2nd ENT said. CLT 

I saw him again for another e/scope. He says boost immune system.  Rest.  Take pain relievings meds

Government guidelines say treat with strong antibiotics.  

It seems to run a course of 12 weeks.  Twice a year. Is half a year of pain and suffering.  I don’t think anyone gets how F painful this is.  I am on tramadol for back pain. And it does not take the pain of lingual tonsillitis away.  Over it. 

I don’t know what to do. It doesn’t appear they remove them.  Or laser them.  I could try university hospital. But dealing with back pain at another.   Melbourne Australia 

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  • Posted

    Hi Rhonda, I remember your post. Sorry you're still dealing with this problem. I took antibiotics after having swollen lingual tonsils for a year. They worked like a charm but only for 10-15 days. After that they started swelling again with yellow stuff inside. As you know lingual tonsils have no open holes so the bacteria stays inside.

    I cut down on dairy and gluten which prevented the lingual tonsils from swelling to the point I cannot even breath.

    But fast forward this week, I got an awful cold or virus and here we go they are swollen and keep me choking. DOn't know if I need another course of usless antibiotics? 

    The thing is that they do only Strep A swab which comes back negative. Maybe they should run other tests to check other types of bacteria? They must know better than me..but they seem to just shrug their shoulders.

    May I ask you if you can see your lingual tonsils in the mirror? I have lots of bubbly like stuff swollen in the throat. But there are also 2 palatine tonsil like tissues on both sides. I wonder if these are my tonsils grown back ?

    please keep in touch as it seems we are rare here with our problem.

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    • Posted

      I am so glad to hear from you.  Yes we are similar.  Sorry to hear it. 

      I did not know about the bacteria being stuck inside.   I have seen them on the camera. Blown up. Cos it's a sea of tiny cells.  In the car I can see back of throat is red on each side. Lots of light in the car.   (Someone once asked me if my tonsil was growing back but nobody since agrees)??   My GP got on a chair and had a big light over my mouth. I tilted my head back over the chair. She said it was red (infected) all the way down.  

      I also have had a bit of relief with antibiotics (abx) for a week.  I have 2 lots of at a time. 

      Then after I stop it flares up again.  I don't know how you stood it for a year ? Mine seems to run a course of 12-18 weeks. 

      Last time I saw ENT he remarked that I was not producing mucous.  He forgot to write to my doctor after saying he would do it right then.  He rushed me out.  I asked about cancer he said definitely not. My GP rang him.  He said he wondered if I had Sjogren's Syndrome. Blood tests say I don't.   My tongue has holes in it. (Desicated ) .  And that holds bacteria in it.  The ent thought he might find cysts. But none were present.  

      The Gastrointerologist suggested the gluten free organic food no processed food. Which is expensive. We did do it and I did get well. But it could have been I was about to get well anyway.  Yes all shrug their shoulders.  ENT says it's rare. The other 2 cases he has have auto immune diseases and use low dose abx. He suggests that's the bad thing.  No antibiotics but Australian guidelines say to use very strong antibiotics.   

      I do have ME-CFS and my blood test show auto immune disease at a high level. Low Natural Killer Cells.  B cells. T cells.  Which relate to ME/CFS. 

      I did a stool test for research for CFS and it showed strep b at 99%. But the ENT said what's in the bowel is not in the mouth.  But most doctors now realise that the bowel does reflect the immune system.  The protocol for this was very strong abx. Very expensive treatment. U take for xx days.  Then probiotics for xx days.  

      I am doing pain management clinic for failed back surgery pain.  Twice a week. So I have little spare time.   My husband retired.  He is older than me.  I have applied for disability.   Once it comes through I will see the CFS doctor and try the protocol again. 

      yiu think I would get relief from tramadol. But Nooooo?!   I take panadol osteo as well.  ENT suggested I add neurofen and it works the best. But I my GP thought taking that taking neurofen long term was not a good idea.  I take it for sleep.  

      I have dentist today. A little filling.   I have got CLT after dentist on one side once and another time after surgery.   I do wonder if it's there all the time.  Cos I may have a sore throat for 2 days but it goes away.  But when I get a cold it's really painful.  And cold symptoms are not so severe with no mucous.  It's expensive being sick hopefully I will get a health care card.  I do have private health insurance.  We have Medicare but there is always out of pocket expenses. 

      Where do u live ? 

      I have grown up children and grandchildren and 3 poodles. 

      Melb. Australia 

      (  the GP did nose swab) GP says ppl are carriers but don't always get sick. And it rarely shows up.  

       

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    • Posted

      Hi Christine.    I have CLT again.  Pain for over 2 weeks.  I want to address a question u asked

      when I look in my throat that little wobbly thing called Uvula?  It's not red now.  

      Further back on each side is a raised bit that is red. ?? What is that.  Is it where tonsils were. 

      If I am in car with light on my tgroat and can tilt head. I can see red.  I have swollen glands. But today right seems more swollen.  Antibiotics did nothing much this time.  I had stronger ones last time.  The pain is horrific. It hurts to talk.  I don't feel well.  It's cold in Melb.  I actually have post nasal drip   I did read that nose swabs are often negative. But it doesn't mean it's not step tho. 

      Am over it.   Rhon. Melb Australia 

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    • Posted

      Hi Rhonda,

      So sorry to hear you’re not feeling goodsad I can relate. I just finished 10-day antibiotic course which was so strong that i have stomach and digestion issues. It settled the swelling in my lingual tonsils. This time I had a huge swollen lymph node on the right side of the neck. Doctor did a seab and said it’s strep this time.

      I also have low grade fever all the time 37.4C  mostly. They have bo answers for me probably they don’t do certain tests that could reveal some sort of inflammation?

      Could you check your teeth? You know teeth, especially root canals can do anything.

      Also a good idea to get rid of the postnasal drip. This makes your tonsils filled with bacteria. Sometimes hidden sinusisyis can cause these problems too. So, I’d suggest using a spray at least once a day. Preferably sea water with aloe if you have such in your country.

      Drink lots of tea.

      And walking helps your body fight against viruses.

      Let me know how you feel.

      All the best,

      Christine

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    • Posted

      Hi Christine,

      thanks for replying.  I see dentist next week   For me to have pnd is weird as I have dry mouth and make no mucous. I am on Tramadol for back pain and it doesn't cover the pain. 

      Am seeing GP today.  Last time I had strong antibiotics it worked.  

      It's cold and windy in Melbourne.  I have been doing Tai Chi and stretches at home.  I haven't felt well enough to do bike.  I walked a week ago. I think the wind is what is causing the pnd. When I had swab done of mouth it showed nothing. I think I told u I did a bioscreen au faecial test which showed strong strep ( can't remember if it was A or B ). 

      I have gargked with salt water.   I can't take anything for my pnd eg antihistamines as I am too dry. I have tried coconut oil in my mouth. I have a spray and one from naturopath.  They give relief for a second. 

      I wonder if swab of nose would reveal anything. 

      The ENT said to boost my immune system.  ????! Maybe I need sinus scan ? 

      My temp is 37.5 but they said that was my under active thyroid.  (Hashemoto's ). 

      Rhon 

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    • Posted

      Hi Rhonda,

      How are you feeling today? How was your appointment with your doctor?

      It’s summer here and my throat isn’t dry like in winter. But I have this low grade fever which makes me feel weak and tured all the time. It scares me as it can be a bad sign for serious diseases.

      May I ask you your age? I don’t think you need a sinus scan if you don’t have obvious signs of sinusitis. I’d avoid unnecessary scans. 

       Also do you swollen lymph nodes in your neck or anywhere else? 

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    • Posted

      Hi Christine.  My GP us empathetic.  I have strong dose antibiotics and changed to different one.  5 days. Twice a day.  The notes say within 3 days I should feel a difference. 

      this morning I took my 2nd one.  Throat feels a bit better.  But huge upset tummy.  

      I was to rest. But my dil called in with baby. (I am 62.  I have CFS. And failed back surgery syndrome).  I was going to make soup.    Its sunny outsude but windy in Melbourne.  July is the coldest month.   But I hate summer.  But yes my throat feels dry.  I changed my dry mouth tooth paste.  I have lemon in my tea.  

      I have dietician appt tomorrow. And u cancelled the first. So don't want to cancel this one. 

      But I don't feel well. She said my voice shows there is something wrong further down.  

      I will not take abx in morning.   Will take it after.  It's hard to say to ppl. I have a sore throat and I am not well in a week.  I need to rest. But ppl keep turning up.  I wasn't even going to shower.   I was happy to see my grand daughter #4. I can't wait until I can kiss and cuddle her. I am allowed to see mum on Sunday. It was not as red on that thing at back. That is where tonsils are.  

      Where do u live ? USA?  U.K. ?   How old are you ? 

      I think my GP is frustrated as she doesn't know what else to do.  It goes away and I feel better. Until the next bug.  I think I got over the last one a bit quicker. But I rested. 

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    • Posted

      I meant where palatine tonsils were.  

      When I have the 'scope put down to look. I love that it numbs my throat.  Heaven for a few awhile to have no pain.   Maybe I see a different ENT.  

      I had sinus surgery years ago.  I didn't have this then.  Failed sinus surgery 

      there is an ent that is a professor and it's hard to get an appointment to see him. But I am thinking I might write to him.  

       

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    • Posted

      Hi Rhonda,

      Hope you are having a nice day.

      So you hve grandchildren, that’s sweet. Not being able to kiss them can be hard on you. I’ in my 30s and live in Canada. As I guess you don’t have palatine tonsils? I wonder if that’s the cause for lingual tonsils to swell? Mine were removed 12 years ago. The biggest mistake I did. My dad is a smart man. He was against removing them. No 12 years later doctors are against removing tonsils either. The one time I was inemeregncy, the dr there told me if my doctor told me that palatine to sils grow back. I was in a shock. So might be my to sils grew back as I have 2 round things on each side of the throat but way down than the actual tonsils were. Plus my lingual to sils are so swollen I have hard time sleeping and breathing. They are about 0.5cm probably.

      Let me know how you feel today. 

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