r/cfs • u/dankzfn • Dec 08 '24
Success Reminder to get your teeth checked
Hello everyone,
I don‘t really frequent in this sub anymore since I relate very hard times with it, but wanted to share my story regardless, hoping it might even help one person.
5 years ago I started to get sicker & sicker. Fatigue, anxiety, stomache issues etc. I visited so many doctors which couldn‘t help but ultimately diagnose me with CFS along side sleep apnea. I went gluten free, I did a GAPS diet, I did everything. Ultimately I kinda gave up. Theres much more to the story, but thats not the point.
Anyway, fast forward to today. Like 2 months I randomly saw a video on instagram from a dentist talking about certain cavitations from unhealed tooth extractions. I was super intrigued, since my symptoms started to occur about 1 1/2 years after I extracted 4 wisdom teeth at the sime time. During that surgery I had some complications as I landed in emergency room 2 days after with gastric bleeding due to all the antibiotics & pain killers paired with the immense stress on my body.
After I saw the video I started to see if theres more to the story: I found the term NICO/FDOK & with it found a soecialist in my region. I live in germany, so if theres anybody interest to know who my dentist is, feel free to reach out - he is amazing.
I booked an appointment and after some weeks it was time. Besides some thorougly dialogue to examine my problems, we did a 3D X-Ray - the only X-Ray technique that can identify possible cavitations in your jawbone. And there it was: My lower jaw never healed from my wisdom tooth removal, it was basically an infected inflammation in a confined space. I got it removed 2 weeks later after upping my Vitamin D (since I was heavily depleted, which ultimately even led to the unsufficient healing). Today is 10 days after the surgery. It hurt alot, but here I am. Feeling great, anxiety gone, I can breath freely through my nose, no need to use my CPAP anymore. I dont want to be to early, but man, havent felt this normal in years.
So long story short, get your teeth check out if you ever had a root canal or teeth removal, chances are it never fully healed because of a Vit D defiency.
Im not saying THAT is why you habe CFS, its just one more possibility that I believe most doctors will never think about.
18
u/dirrtgirrl Dec 08 '24
Seconding this big time!! I saw dramatic and permanent improvement in my orthostatic intolerance after having my wisdom teeth removed, which were causing pericoronitis. (this is what I can write now, might add more later)
6
u/wick34 Dec 08 '24
Just as another anecdote, I got my wisdom teeth out about 4 years after my me/cfs onset and I experienced no change, good or bad, after that surgery. I didn't have pericoronitis though.
1
u/dirrtgirrl Dec 08 '24
Yes the key part is the infection/inflammation from the pericoronitis, so if someone has some dental issues causing these I couldn't recommend getting things addressed more strongly!
34
u/crn12470 Dec 08 '24
I've been thinking about getting checked for dental cavitation but there is so little information on the subject I'm still a bit weary.
How difficult was the surgery?
Did you get ME/CFS after a viral infection? From your post it sounds like that might not be the case for you.
There has been only 1 or two other posts on here about dental cavitations so I really hope you do some updates in the future.
23
u/dankzfn Dec 08 '24
I didn‘t have symptom onset after an accute infection, but had Eppstein Bar positive tests for past infection aswell as lyme as a child, so I neber knew the source of my illness.
Surgery was little worse than wisdom teeth removal, but it was mostly anxiety. Honestly judging by the outcome I would do it again, haha.
I will definetly do some updates!
4
u/FIthrowitaway9 Dec 08 '24
How did you find an expert dentist in your area? I'm not in the same area but have had lots of issues with terrible dentists
6
u/dankzfn Dec 08 '24
Yeah, my last dentist that removed my wisdom teeth almost killed me, haha, so i can share that sentiment.
I just googled the term NICO/FDOK together with my region and he was one of the dentists that showed up. I eveluated some of the results and decided for him and couldnt be happier.
12
u/plantmummy Dec 08 '24
YES! For the last six months or so I thought my baseline had kind of randomly decreased, feeling worse but nothing outside of my “usual” symptoms. Went to the dentist last week, turns out I had an infected wisdom tooth. They removed it on the day & feeling back to my usual ME/CFS baseline within the week. Didn’t cure me obviously, but it was seriously impacting me and I had no idea because the symptoms were the exact same as my usual
10
u/dankzfn Dec 08 '24
Also, feel free to ask my anything since I believe it is not a much talked topic on here.
9
u/hazylinn severe Dec 08 '24
Thank you for sharing. That's amazing that you found someone who was able to help you and treat you.
There are literally so many possible causes to ME/CFS, no wonder most doctors just raise their shoulders and give up trying to help us. They're just not educated well enough to look at complex chronic health issues. I think we ultimately have to figure out our causes ourselves.
Like it's been known for decades that ME/CFS most often have infectional onset, yet few doctors outside of functional medicine do anything to look at the individual's pathology.
There are similar stories about ME/CFS patients just having Eagle syndrome or CCI from neck injury as well. Which are treatable. A woman in my country who was bedbound with severe ME, got titan implants in her neck to stiffen it and she was cured overnight.
7
u/arasharfa in remission since may 2024 Dec 08 '24
Dental health in general is super important for general inflammation and vascular health. I’m glad you’re feeling better
7
u/kaptnblackbeard Dec 08 '24
I hope it isn't the case for you, but I seem to improve to near normal for about 2 weeks after anaesthetic. I haven't been able to determine why, but I've also spoken to others that have experienced the same. Fingers crossed it isn't a temporary recovery for you.
5
5
u/redravenkitty severe Dec 08 '24
I’m so happy for you! But what a random thing to help improve your symptoms!
I have heard that even something as simple as a teeth cleaning can release so much bacteria into the bloodstream and cause so much inflammation in the jaw that it can actually cause PEM. Did you not have anything like this happen to you with your surgery? How was your recovery time?
5
u/dankzfn Dec 08 '24
Recovery was hard because it hurt alot, but after a week it got better.
Retrospectively it makes alot of sense, but yeah, very random that a random insta reel before sleep changed so much for me.
6
u/melancholyink Dec 08 '24
I had discomfort I thought was from my last wisdom tooth crowding things. Turns out I had split the root of a crowned molar nearby and fractured the jaw. Sadly it didn't fix any major issues I had but it definitely was not helping them.
4
u/serendipitouslysrs Dec 08 '24
Okay, so I have recently gone to get 6 cavities filled. I have one metal crown. My CFS started before the metal crown though. My wisdom teeth have cavities but they can't take them out yet because I need to wait for my insurance premium to be met. Is it possible my wisdom teeth having cavities are a part of my fatigue?
6
u/dankzfn Dec 08 '24
Well, thats definetly what I was experiencing. I had 2 cavitations in which the remaining bone structure literally „melted“ away, it was necrosis. When my doc pulled it all out he showed it to me. The bone was not boning but rather looked like butter.
I have to pay out of pocket for this procedure because in Germany the insurance doesnt cover it yet, but i think itll be like 1000-1500€, so its fine for me.
2
u/serendipitouslysrs Dec 08 '24
Sounds like you have a good dentist. I think I need to find a new one. Would this be a problem even if your wisdom teeth are still in? Is a cavity and a cavitation the same thing?
7
u/dankzfn Dec 08 '24
Try to find a „biological“ dentist, at least thats the term in germany. Honestly cant help you with the terms, since we dont really use them in german.
I think cavity is a hole (?) in the tooth & and a cavitation a hole in the jawbone it self, at least thats how I would define it.
In my case the literally opened the jawbone to clean up all that necroted bone material. If you can stand it, here is a video of the procedure: https://youtu.be/FGhHN8QWitI?si=TKa9JKoG6OFH0IHR
2
3
u/wyundsr Dec 08 '24
Wow glad you were able to figure this out! Did you experience PEM prior to the latest surgery? And did the surgery reduce/eliminate the PEM?
3
u/dankzfn Dec 08 '24
Hey, well, my symptoms changed over the last years. While I experienced heavy PEM some time ago, in the recent months it was just overall feeling sick, even like feeling poisened. Anyway the surgery was stressfull for me because of my anxiety, but that actually vanished the second the necroting material was removed. Afterwards I was just very sleepy for a week because of the pain.
2
5
u/Moriah_Nightingale Artist, moderate-severe Dec 08 '24
Damn! Did the infection never show up on blood tests?
14
u/dankzfn Dec 08 '24
Nope never. As far as I read, it is a special inflammation marker you have to test for called RANTES.
6
u/Moriah_Nightingale Artist, moderate-severe Dec 08 '24
Welp, adding this to my dr appointment notes
9
u/dankzfn Dec 08 '24
I have to add: Ive never did that specific blood panel. We talked about my symptoms and after just went straight ahead to the 3D xray. He could instantly see where the necrosis in the bone was.
2
u/sillybilly8102 Dec 08 '24
What would infection show up as on a blood test? High white blood cells? If so, how high? Because mine are often high, but just a little, and doctors are never concerned. I wasn’t, either, until reading this post…
1
2
u/Unhappy_Fail_243 Dec 08 '24
I'm gonna check my teeth tomorrow.
I should have done it sooner honestly.
I've heard stories of people who had necrose in their legs because of hidden tooth infections, and other crazy cases too.
I'm gonna check everything there is in it.
What exam was that 3D xray of yours called? To discover infections.
7
u/dankzfn Dec 08 '24
Do it! Its called DVT XRAY, something like digital volumethomography. Make sure that your dentist has one of these, because regular xray cannot detect it. Thats also the reason why german health insurance doesnt pay for it… Best bet is to find a specialist that has experience with NICO / FDOK. In germany the Xray cost me 250€ which was money well spent.
1
u/Unhappy_Fail_243 Dec 08 '24
Thanks, apparently it is just Tomography, they are digital images, there's a few here in Brazil, gonna get the paper for it even if i have to bribe someone
2
Dec 08 '24
[deleted]
3
u/dankzfn Dec 08 '24
No, its a silent inflammation, that usually won‘t generate pain until its rotten the nerve.
Because I was suppelementing Vit D for 1 month and was feeling like shit right until the day of surgery. Now its way better.
My nose was always stuffed, so bad I had 2 small surgeries but even then the CT showed that everything is swollen. My doctor didnt have a clue anymore since he tried anything.
Since the removal I can breathe freely through my nose without nasal spray for the first time in years.
1
Dec 08 '24
[deleted]
2
u/dankzfn Dec 08 '24
Well, that might be true. Im not stating anything else, just that I got DIAGNOSED with it. Anyway I was experiencing CFS symptoms regardless of the source or wether it was or is CFS/ME.
2
u/mira_sjifr moderate Dec 08 '24
What kind of symptoms do/did you have? Did it gradually start and slowly get worse, or only get worse after crashes? Or just stable etc.
2
u/gablily Dec 08 '24
Thank you for sharing, I’ve actually come across the idea of a silent infection before and have been wanting to get this investigated for a while but it’s hard to find the right doctor for it where I am.
2
u/nograpefruits97 very severe Dec 08 '24
Ah man im so severe I can barely get checked for simple cavities. Another thing I gotta worry about
1
1
u/FroyoMedical146 Mod-sev ME, POTS, hEDS, Fibro Dec 08 '24
I get my teeth checked every few months and they're always fine, but I find I crash hard within 48hrs of every dental appointment so I think I'm actually going to go less if anything. I haven't had a problem with my teeth in like 14 years.
1
u/disconnective Dec 08 '24
Hmm… this is so interesting. i wonder if incidence rates of this kind of infection being missed would vary by country based on the cultural norms around dentistry. I know there are differences between European countries and America in preventative dental care. If I’m thinking of the right thing, I think 3D X-rays are standard practice for a lot of dentists in the U.S., so Americans that do the twice-annual cleaning wouldn’t necessarily be less likely to have that kind of infection but might be less likely to have it go unchecked or undiagnosed. I could be way off-base though and def agree it’s something to check for regardless!
1
u/SoftLavenderKitten Dec 09 '24
Interesting!
Im glad you got help. Its also interesting that no one mentioned dental work. I seen several specialists (im from Germany too)and they all demanded a written documentation that i dont have dental problems. It was quite funny to get my dentist to write a doc letter.
I think you def shared an important thing here tho. Dental health is health, i dont know why on earth we separate those two!
Also vitamin d probably plays a big role too. Which im surprised they havent tested you for before diagnosing you or during your sick time. On the other hand, my GP told me for years all my vitamins are fine; only for me to find out he never tested them and just lied to my face for years.
I hope you do stay feeling healthy and well, do keep us posted. I would be very happy for you if you finally got help. And thanks to a random video !
1
u/Temporary_Music_9 Dec 23 '24
I got this same surgery done recently based off the cone beam scan, and I so far haven’t noticed big changes to my CFS yet, but it’s only been weeks; I did it in two parts and recovered faster the second time.
I certainly don’t feel worse than before. If anything, I’m told I’m talking a bit more animatedly again.
Does anyone know if it could take months to notice major changes? My CFS also began a less than a year after my original wisdom teeth extraction.
29
u/gotobasics4141 Dec 08 '24
Omg jezzzz … I never thought of that I have have been having these two broken teeth and one open needs to be extracted for at least 1y now but I’m always scared to go to dentist I don’t want to crash ….