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Guys, since you’re my friends and you’ve offered me so much support throughout the last year and a half, I figured I would come here to whine/cry/vent. 

My ENT has recommended a tonsillectomy, because I have chronic issues with my tonsils. No, going gluten free didn’t help them - but I didn’t expect that to happen. They’re huge and cryptic, and they got me out of a lot of school days when I wanted to play hookie. I’m 30 now, so I’m obviously pretty nervous about this. Because of my anxiety, I’ve done a ton of research so that I know what to expect and it honestly sounds terrible. I’m having a lot of second thoughts about doing it, because I’m not sure the benefits outweigh the risks. 

If it were just a painful recovery I think I could deal with that. But, I know that bleeding is a real risk and my doctor said it happens frequently. I find that upsetting. I don’t live in a community with a good hospital. In fact, most of the locals joke that unless they are dying, they need to go somewhere else for care. The ENT who will do my surgery lives in another town about 45 min away but practices in my town. He is a great surgeon. But if I have an emergency I’ll be a sitting duck, waiting for an hour to see my doctor - because emergencies inevitably happen at night and on weekends, right? That’s my luck anyway. 

I also have major issues with having to take Percocet after surgery. I can barely stand the thought of taking Tylenol. I know that if I take Percocet and feel the slightest bit weird, I’ll end up in the ER with a panic attack. I’ve also read that even normal doses of Percocet can kill a person because it causes respiratory issues. So, I’m hoping I can get by with extra strength Tylenol...

I don’t know. I’m not “sick” like a lot of others. I have tonsil stones, which sometimes are hard to get out and cause a lot of swelling and pain in my tonsils. But I haven’t had strep in 15 years. It seems like an extreme solution to a minor problem. I have two small kids who need me and I’m not sure I want to have this done, as there are real risks, however small they may be. It doesn’t matter how small the risk is when it happens to you. My friend had to be life flighted to another hospital (again, because our hospital is worthless) because her scabs broke open and she almost bled to death after her tonsillectomy. 

My other option is having the surgery done by my ENT (he performs surgery in the next city, and here, and I will have it done in the next city...) and then go stay with my parents about 3 hours away to recover. That way if there are emergencies I’m 5 min away from a real hospital. But then my ENT wouldn’t be the one to see me if that happened, and if I needed to follow up with him for infection or anything I would be kinda SOL. But at least I wouldn’t bleed to death....

I’ve been losing sleep over this a lot lately. I’m looking at doing this next month because it’s really my only option in terms of timing, since my job isn’t as busy in September. So, I need to make a decision.

Can people share their experiences with me? My doctor said, “Well, if you’re expecting horror, then at least you’ll probably have a less awful experience than you’re planning for.”

sorry for the long rant....but since this section is for anything but Celiac I figured I would rant away. :( 

 

 

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Hi, I also have crypts and tonsil stones but they don’t sound nearly as bad as yours.  What have you tried for them?  I have to gargle two or three times a day with Listerine or I get a sore throat.  I also have to remove them occasionally.

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3 hours ago, RMJ said:

Hi, I also have crypts and tonsil stones but they don’t sound nearly as bad as yours.  What have you tried for them?  I have to gargle two or three times a day with Listerine or I get a sore throat.  I also have to remove them occasionally.

Oh, I've never tried gargling with listerine. I just gargle with salt water when they get bad. I haven't tried much. I did try a water pik but didn't feel like it helped much. The water pik just makes them bleed because they get irritated from the stones. I actually think my kids may have gotten me sick last month and it's still hanging on, so I'm going to try amoxicillin today. My doctor thinks it's worth a shot. Tonsil stones just seem like a minor issue to me. I would get them out, no questions asked, if I were sick like so many other people are - constant antibiotics, abscesses, missing work, etc. But that's not been my experience. 

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4 hours ago, Fbmb said:

I actually think my kids may have gotten me sick last month and it's still hanging on, so I'm going to try amoxicillin today. My doctor thinks it's worth a shot. Tonsil stones just seem like a minor issue to me. I would get them out, no questions asked, if I were sick like so many other people are - constant antibiotics, abscesses, missing work, etc. But that's not been my experience. 

Fbmb,

I have not had your experience.

So I might not be able to help you but I did have recurrent mouth ulcers.  And I have had the furry white tongue common with tonsillitis. .. .though it was diagnosed as thrush instead.  Probably because my tonsils where not also inflamed.

They may not be linked conditions but when I began studying your condition it seemed the two most likely causes were bacterial (in that case the antibiotics) will work or Viral and in that case the antibiotics won't work.

https://www.differencebetween.com/difference-between-mononucleosis-and-vs-strep-throat/

Have your doctor (before your tonsil surgery) check your EBV levels to make sure it is not viral in nature.

Epstein Barr Virus is common in reoccurring Tonsillitis.

Here is the research entitled Detection of Epstein-Barr virus in recurrent tonsillitis.

https://www.ncbi.nlm.nih.gov/pubmed/19488557

Epstein Barr Virus can cause a wide spectrum of problems.

https://www.medicinenet.com/the_broad_spectrum_of_epstein-barr_virus_disease/views.htm

The prevalence of EBV in adults is considered rare in the Western World (Non-Japanese) but that may be because no body is looking for it.

From the above link on the difference between strep (bacterial) and mono (viral) they note quoting

"In most of the patients, the condition gets resolved completely; only 10% (of adults) can get chronic relapsing syndrome."

Recent research on celiac disease and EBV indicates it shows up in Celiac's at a higher rate than expected.

Here is a thread on the celiac.com forum when this research came out about the EBV and possible Celiac connection.

https://www.celiac.com/forums/topic/121466-epstein-barr-virus-linked-to-seven-serious-diseases-including-celiac-disease/

I hope this is helpful but it is not medical advice.

As always “Consider what I say; and the Lord give thee understanding in all things” this included. 2 Timothy 2: 7

I share your concern with the surgery. Testing to see if it (the tonsillitis) is viral in nature can guide you about what is best for you!

He/She (the doctor) should of swabbed you to get an idea of the origin of the tonsillitis (bacterial or viral)  . .. but it is not too late yet to find out!

There is probably more research I could add to the above research but sometimes as I am learning . . ..less is more.

This will be enough to get you started in the right direction.  Is it bacterial in origin or is it viral in origin?

And if you are not comfortable with the surgery yet put it off for now. . . till you know the best course of action for you!

Again this is not medical advice but I hope it is helpful.

Posterboy by the grace of God,

 

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5 hours ago, Posterboy said:

Fbmb,

I have not had your experience.

So I might not be able to help you but I did have recurrent mouth ulcers.  And I have had the furry white tongue common with tonsillitis. .. .though it was diagnosed as thrush instead.  Probably because my tonsils where not also inflamed.

They may not be linked conditions but when I began studying your condition it seemed the two most likely causes were bacterial (in that case the antibiotics) will work or Viral and in that case the antibiotics won't work.

https://www.differencebetween.com/difference-between-mononucleosis-and-vs-strep-throat/

Have your doctor (before your tonsil surgery) check your EBV levels to make sure it is not viral in nature.

Epstein Barr Virus is common in reoccurring Tonsillitis.

Here is the research entitled Detection of Epstein-Barr virus in recurrent tonsillitis.

https://www.ncbi.nlm.nih.gov/pubmed/19488557

Epstein Barr Virus can cause a wide spectrum of problems.

https://www.medicinenet.com/the_broad_spectrum_of_epstein-barr_virus_disease/views.htm

The prevalence of EBV in adults is considered rare in the Western World (Non-Japanese) but that may be because no body is looking for it.

From the above link on the difference between strep (bacterial) and mono (viral) they note quoting

"In most of the patients, the condition gets resolved completely; only 10% (of adults) can get chronic relapsing syndrome."

Recent research on celiac disease and EBV indicates it shows up in Celiac's at a higher rate than expected.

Here is a thread on the celiac.com forum when this research came out about the EBV and possible Celiac connection.

https://www.celiac.com/forums/topic/121466-epstein-barr-virus-linked-to-seven-serious-diseases-including-celiac-disease/

I hope this is helpful but it is not medical advice.

As always “Consider what I say; and the Lord give thee understanding in all things” this included. 2 Timothy 2: 7

I share your concern with the surgery. Testing to see if it (the tonsillitis) is viral in nature can guide you about what is best for you!

He/She (the doctor) should of swabbed you to get an idea of the origin of the tonsillitis (bacterial or viral)  . .. but it is not too late yet to find out!

There is probably more research I could add to the above research but sometimes as I am learning . . ..less is more.

This will be enough to get you started in the right direction.  Is it bacterial in origin or is it viral in origin?

And if you are not comfortable with the surgery yet put it off for now. . . till you know the best course of action for you!

Again this is not medical advice but I hope it is helpful.

Posterboy by the grace of God,

 

I’m actually going to the lab in the morning for a throat culture. We’ll see what comes back, if anything. I don’t feel ok about taking antibiotics without confirmation that I need them. I pride myself on being able to stay away from them most of the time. While I await my culture results I’m going to take some Claritin. I haven’t tried allergy medicine yet at all this summer, and my doctor thinks it could be allergies if it’s not an infection. We’ll see. Because my tonsils aren’t making me sick I think I’ll think on it some more, unless they become more problematic. 

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On 8/20/2018 at 11:34 PM, Fbmb said:

I’m actually going to the lab in the morning for a throat culture. We’ll see what comes back, if anything. I don’t feel ok about taking antibiotics without confirmation that I need them. I pride myself on being able to stay away from them most of the time. While I await my culture results I’m going to take some Claritin. I haven’t tried allergy medicine yet at all this summer, and my doctor thinks it could be allergies if it’s not an infection. We’ll see. Because my tonsils aren’t making me sick I think I’ll think on it some more, unless they become more problematic. 

Fbmb,

I was just curious what you found about your tonsils?

And to report some research I came upon that might help you.

It is entitled "XMEN disease: a new primary immunodeficiency affecting Mg2+ regulation of immunity against Epstein-Barr virus."

https://www.ncbi.nlm.nih.gov/pubmed/24550228/

And why XMEN disease is considered more prominent in men . . .it can happen in women too.

It is really too new a disease to say for sure but treatment of at least in some X-MEN cases supplementing with Magnesium can help. 

This article explains it well.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

If supplementing is not "your thing" then using Epsom Salts works as well to help us absorb Magnesium through our skin.

I find Magnesium Citrate or Magnesium Glycinate work well for me but I think they mention other Magnesium chelates in the article cited above and why I mention about how to use Epsom salts article (below) if would prefer not to supplement and get your Magnesium in a more natural way.

This is the best article I could find on the amount and frequency to use Espom Salts for best results to increase your Magnesium levels entitled "Report on Absorption of magnesium sulfate (Epsom salts) across the skin".

http://www.mgwater.com/transdermal.shtml

I also recommend this research as first posted by Knitty Kitty that might be of interest too you entitled "Clinical manifestations of the mouth revealing Vitamin B12 deficiency before the onset of anemia"

https://www.ncbi.nlm.nih.gov/pubmed/12671582

I hope this is helpful but it is not medical advice and you are doing well.

As always “Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2:7

Good luck on your continued journey.

Posterboy by the grace of God,

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Fbmb,

I never can get it all in one post.

I was also going to cite this new research where they are finding the genetic causes of an inborn metabolism for certain Vitamin/Minerals which lead first to inflammation and then disease in time like when EBV takes over the Magnesium receptors in the cell leading in time in those genetically susceptible to CFS/ME.

But if you have a chance to read the simmaron research they explain it well.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

Here is the research so you can read it yourself or the next user/reader still looking for an answer

Entitled "The role of MAGT1 (Magnesium Deficiencies) in genetic syndromes"

https://www.ncbi.nlm.nih.gov/pubmed/26422833

And why I see this often how Magnesium can help fatigue I didn't really know why until recently as explained well in the Simarron research article.

But just as typical is when medical researchers try and replace a Vitamin/Mineral with a medicine instead.

quoting the MAGT1 research "This led to the description of XMEN (X-linked immunodeficiency with magnesium defect, Epstein Barr Virus infection, and neoplasia) syndrome, for which Mg2+ (Magnesium) supplementation has been shown to be beneficial."

But for simmaron this won't do .. . they would prefer you take a drug instead to replace the role of Magnesium in the body.

They noted this in in their online article.

quoting simmaron "Low levels of free magnesium turned off NK and T-cells – and allowed EBV to take up residence in the cell."

they even noted "When the patient went off the magnesium supplementation the situation reversed itself."

but dont' take Magnesium because basically you won't need the drug/medicine we are making to replace the function of Magnesium in the body.

to be sure more research will be needed to establish a cause and effect but if you have a  MAGTI genetic inborn magnesium processing issue then taking Magnesium will/could  help your EBV infection if indeed it is contributing to your tonillitis.

they note to be be fair that "Whether or not  ME/CFS falls into chronic EBV infected group largely depends on who you’re talking to.  An EBV ME/CFS researcher was, however, recently given a major NIH grant to study EBV infection and the Simmaron Research Foundation is engaged in similar research."

But I think it would definitely be worth a try since your body already uses it (Magnesium) in the kreb cycle to make energy with and anything that interferes/with breaks the kreb cycle will lead first to inflammation then disease in time.

Again I hope this is helpful but it is not medical advice.  And why I didn't put two and two together back then about my mouth sores and Magnesium I do know Magnesium Citrate helped my fatigue and looking back on it ..... that is when most of my mouth sores went into remission.   . .when I begin supplementing with Magnesium.

If I do get a mouth sore now taking Lysine gets rid of it within a few days.

I hope it helps but this research indicates it just might!

As always “Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2:7

Posterboy by the grace of God,

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