• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What Do You All Do About The Dentist?

Dainty

Senior Member
Messages
1,751
Location
Seattle
I do not visit the dentist yearly. After 5 years of not seeing a dentist I found a holistic one accustomed to working with MCS, and I have seen him only once for a quick look and x-rays, no work done. I have multiple cavities in various stages, and basically I feel like I know exaclty where my mouth is at better than any dentist ever could. When I did see that dentist, I as able to report where every cavity was located and which ones were small and which were large before he even told me the results of the x-rays. Kinda like doctor check-ups - I only think they're necessary if you need the paperwork or you don't pay attention to your own body. You'll know when something's wrong.

There are nutritional protocols for healing cavities that I've seen a lot of people have sucess with. I'm not one of them because my body is still intolerant of even small doses of vitamin D, but you might consider checking them out. In my experience cavities get worse up to a point, then the decay stops. I've also known several people who have mentioned that their dentist said, "Oh, well you had some cavities, but they've sealed over and are okay now".

Do you have a dentist who will test your compatibility with the materials?

Also, you might want to avoid injections with any form of epinephrine. I think the one I have used is carbocaine.

Sushi

I second both these.

My body reacted to the tiny amount of epinephrine as if it was a full dose given for anaphylaxis! Uncontrolled body-wide tremors, sky high blood pressure (before this I've only ever had freakishly low blood pressure), awful sensation.

One who tests for the materials is key. They may be more expensive, but imagine the expense of having something permantly inside your mouth that you react to! If you can't get blood tested, at the very least try to find someone who can do reliable muscle testing for you, or a dentist who will let you take samples of the materials and test them on your own as well as you can. Anything is better than putting a random substance in your mouth and hoping it'll be okay.
 

L'engle

moogle
Messages
3,219
Location
Canada
Desert Essences dental tape is pretty great. The tape has tea tree oil on it, which is antibacterial and the tape is broad enough that you can floss a large surface area between each tooth and around the tooth enough that it actually feels more effective than brushing. My teeth feel much cleaner when I use this stuff. I tend to feel that preventative measures like xylitol and other antibacterial foods are worth the cost if they save you on dental bills.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I used to get my teeth checked yearly or every couple of years (thou in my bedridden years I didnt as it would of been impossible).

I nowdays thou are "supposed" to go to the dentist every 6 mths (thou my recent appointment was 5 mths overdue as I'd just been too busy trying to keep up with the doctors appointments and hadnt managed to fit dentist into one of my weekly pacing schedules).

They increased from my appointments from once every 1-2 years to every six months after in a 12mth period I suddenly developed 5 holes in my teeth (before that I'd only needed one filling each time I was pregnant, never even needed a filling in childhood). The 5 teeth holes were all cause a doctor had put me onto drinking sports drinks for my POTS which then had weakened and eatten away my tooth enemal, so now that's very thin and my teeth will now need to be closely watched :aghhh: .

The other day when I went to dentist he also said.. my mouth was extremely dry (interestingly he asked me what health condition I had causing my very dry mouth..it was sticking to all his instruments it was so dry) and that too will impact upon my teeth (as the saliva is protective). Those who have dry mouths are more prone to teeth issues. He said just due to the extremely dry mouth alone (I had my water bottle with me and was drinking too so it surprised me when my lip stuck to his gaget) he'd be recommending 6mthly visits.

I learnt not to have dental anesthetic which has epinephrine in it a couple or years or so ago after I had a severe reaction to dental anesthetic with that in it. It sent me into major neurological symptoms.. my whole body shaking and jerking.. I nearly had a full seizure in the dentist chair. It took my symptoms almost an hour to calm down after my appointment enough to be able to walk out from the dentists (I told them I didnt need an ambulance and that I'd soon come good.. it was scarey as I didnt know if I was going to come good or not..but really didnt want ambulance to have to be called). Also where the lidocaine with epinephrine had been injected, it was agony even the next day.. hurting far more then any of the areas where my wisdom teeth had been removed.

After that severe reaction I researched..and found out sure enough.. ME people often react to epinephine and some ME specialists say to avoid this (really wish I'd known that earlier). The next time I went I had the lidocaine but this time WITHOUT the epinephine and was fine. (ive since found out throu testing that my epinephine at times goes very very abnormally high, so high that a couple of labs thought there was something wrong with my lab results.. so no wonder I had a major reaction to that injection!!)

When my ME was worst .. it used to be very hard to keep holding my mouth open at the dentist (I guess I should of requested a guard to help hold my mouth open). Holding my mouth open was a lot of strain on my mouth energy wise.. made it really ache and my jaw would start to tremor with the effort involved. Fortunately I dont have that issue now.

My dentist the other day was telling me that those who have chronic health issues.. it is even more important for us to not be missing our dentist appointments and keep our teeth in good condition as bacteria builds up in the mouth when one has a lot of plaque and having the scales and cleans.. help lessen bacteria in the mouth which can really impact on many chronic illnesses and make us sicker. This is certainly something we all need to consider when weighing up pushing ourselves to go to dentist or not.
 

AFCFS

Senior Member
Messages
312
Location
NC
I actually enjoy going to the dentist for the check-ups/cleaning. He is one of the few medical professionals I do not feel the need to argue with. The chair is comfy and since the dental assistant normally has some tool in my moth, I do not feel pressed to conversation. I find dentists, in general, to be rather detailed and slightly obsessive in their work - a trait I wish some of my other doctors would share to a greater extent.
 
Messages
78
I have always been pretty regular about going to the dentist until this year as I had a moderate relapse and am still recovering after nearly 11 months. Had my first cleaning today while still somewhat ill, it was okay, at first when they tipped my chair back I thought I might be going to have a panic attack, but then I was able to relax and actually enjoy the cleaning like I used to. It's weird having dental work done when you're still sick. I do have three cavities so I don't know what I'll do about that yet...if I'm still not feeling back to my old baseline in the next few months I may postpone the work, it seems like I am still too sick to undergo the stress. I had learned to ask for the anesthetic w/o epinephrine also.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
This is the best essay on dental health and the relationship to the endocrine system that I've ever read:

http://www.jackkruse.com/the-teeth-in-disease/

"Dr. Leonora had some new theories about how dental caries (tooth decay) were caused. He rejected the dogma I was taught in dental school that the acid from bacteria caused demineralization of enamel and dentin in teeth to cause dental decay. He took it much further. He postulated that that dental caries was caused not by bacteria, but caused by inflammation that was due to hypothalamic interruption of hormones that controlled avascular structures in teeth and other endocrine organs. He believed that the parotid gland in our mouth acted just like our pancreas does in our gut. He believed that the parotid gland indirectly controlled the metabolism of avascular structures like dentin, enamel, and the islets of Langerhans that control insulin release in the pancreas. This axis essentially helped the brain sense the initial carbohydrate breakdown in the mouth, and relayed that data to our parotid gland and pancreas to formulate the brain/gut axis response hormonally to this energy substrate. This is why salivation and insulin secretion can often occur before a sugary meal is even eaten. Leptin receptors are also now known to exist in the mouth, gingiva, and on taste receptors."

Ema
 

GracieJ

Senior Member
Messages
773
Location
Utah
I actually forgot about teeth for about six years, so busy surviving. Turns out that is a very common situation among single women supporting themselves. It just cannot be a priority when so many other things are pressing. I can see reading the posts here that getting to the dentist is hard for a lot of ME/CFS people.

A very old root canal and cap called my attention in December 2009 when the cap came lose. I went to the dentist thinking it would be a quick fix with a little cement and would be on my way, but it turned out the tooth stub beneath was cracked. I was not in the best shape physically at that point, reaching my breaking point with work and life, and the news that my mouth "needed" $3,000 of work left me in tears right in the office. I seldom cry anymore. This was the straw that broke the camel's back and led to a huge crash, which was not a bad thing, really.

I turned to a trusted brother for advice; he said he could help me with expenses to fix the tooth. Well... other siblings were brought into it without telling me, and next thing I know, I was on the carpet being chewed out for "neglecting" myself, very ugly, not to mention that I was somehow lazy and irresponsible for not having insurance. Anyway...

Months went by as several changes and questions in my mind brought the advice of no less than 4 dentists and 3 endodontists. I'm really not that picky, it was just circumstances like retiring older dentists. My view of dental work began to change considerably. I'm just not sure of the truth of the "need" anymore, and believe that a tooth with a cavity can heal, like any other body part that is living tissue. The myriad chemicals used in dental work, well, I no longer trust that, either, and opt for a good check-up as I can, a good cleaning, and do my best to clean my own teeth daily with good, natural products. I've learned I have periodontal disease, due mainly to ME/CFS, imo, and do all I can to keep my mouth healthy. Like Tania, my mouth is very dry, and since I am on NO prescription meds, it has to be the illness itself, or so I presume. I have a gooey mouth on awakening... and I hear that more and more all the time from fellow ME/CFS sufferers. Mouth chemistry is just different, along with everything else. The hypothalamus idea makes sense.

I avoided an apioectomy, was able to get an older dentist to redo the original root canal at a much-reduced cost, and was finally given a permanent cap months and months after the first visit. The tissue around the tooth occasionally still gets infected, and I then do a rigorous treatment with clove oil several times a day to control it. My new dentist has been supportive of my leave-it-alone attitude, saying he'd do the same thing. Why pull a tooth if it is stable for the most part? So glad he feels that way! The long-term plan is implant, but as long as the issue is local, I will live with it.

Now another tooth is letting me know it is on its way out... same thing, clove oil several times a day. I do not want the root canal or extraction or the implant for several reasons. (One-two drops clove oil in about a 1/4 cup water -- it is STRONG and DO NOT swallow it, just gargle and spit.)

These are front teeth, damaged from an accident 37 years ago.

I've been lucky to have few new cavities or problems, as dry as my mouth is. I was also lucky along the way to be told that the amalgam fillings were loose and leaking -- and those are gone! It is gum health that is my biggest concern.

My main issue with dental care is that I had many people tell me I was neglecting my teeth, it was my "fault," etc. So many other issues in play! I feel good about it now, even as I can't afford to get to the dentist for another cleaning until January, if I am lucky. We just are not in control of everything, so easy come, easy go... including teeth. *Sigh* like I needed another piece of ME/CFS to not explain to other people. :)

Having drilling and work done? I've lived with so much pain, I'm pretty conditioned. I get in the dentist chair and totally, completely relax and go somewhere else mentally. The dentists and their assistants can hardly believe it. It's like I'm in a deep meditation or something, I'm just gone. Still use anesthetics, but emotionally, mentally, I just sit there like I'm getting a foot massage or something. Completely at ease.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I have been only twice to the dentist since being ill with ME.

Once was to have a tooth extracted that had got a bad infection. It hurt A LOT. I could have had a root canal but didnt feel up to it and didnt want more amalgam in more mouth.

Since then i went a month ago for a check up. I need a medium sized filling. Im having to pay private (£70) for a non amalgam one. Im going on Thursday this week. Im not looking forward to it, but will be happy if it done properly and at least wont have mercury in it.

After that I need another tooth extracted. Just before I got ME I had a root canal done. It wasnt done well, and the filling came out within a few months. That was about the time i got ME so I couldnt handle going back at the time. I left it too long now and it cant be saved. So out it will come. Its important to have any amalgams taken out in a particular way to avoid exposure to mercury.
I also have two amalgam fillings, one of which i had along time ago and the other i had the same time as the root canal just before i got ME. It had never felt good, so i want that out and replaced with non amalgam too.

I found a couple of dentists local to me that do replacements and are non amalgam dentists. But they dont follow any real procedure to protect you from mercury.
I was begining to worry about this today, but my mum bless her, has done some searching and found a dentist in Portishead, near Bristol. Not too far from me, an hour? Which not only has a very good procedure for removal of amalgams, but they also said they could do the extraction of my bodged root canal, and be careful to get all the amalgam out should the tooth shatter on extraction. Thats quite possible because it is brittle now that it is dead and hollow mostly except the stump in the gum with the amalgam in the root.

Best of all, is that they specifically mention ME on their site as an immune illness that you should take special care with amalgams. So if i go to see them i wont get odd looks when i say "I have ME i want to minimize my exposure to mercury and remove this bad root canal that is harbering bacteria."

So I plan to go to the local dentist on Thursday for this new non amalgam filling. Then go to Portishead for the other work. After that i will probably go local for any new work i need doing but refuse to have any amalgams.