Dental blues

[sunshine44]

How do severe me/cfs people get dental work done when in urgent need?

Please explain this to me, I’m not seeing a way through this rn. I’m 5 years bedridden and incredibly misunderstood in dental community.

For one, I have severe mast cell (or something in this family) and have been allergic to every antibiotic and anaesthesia tried in previous years.

Although I’ve been getting bits stronger and can now do more than 7 foods and can take 3 whole food supplements internally, it’s taken me a LONG time to get here. Without mouth/throat closing up, brain on fire, tachycardia , hives everywhere etc. I’m still quite fragile.

I’ve never had a cavity in my life for nearly 40 years until this past 3-4 years. It all went south quickly with this disease despite brushing.

Looking to see if anyone has any ideas I haven’t thought of.

I’ve already called every mobile dentist in area, no one services my area, my old dentist I last saw right before bedridden has not returned my call and I called my state’s dental association they were flabbergasted and I literally only told them 10%. Kept it super factual and non concerning as possible. They told me to go to a hospital, haaa, we all know how that game goes. Plus, I’m not mobile. I require either ambulance transport or family friends getting a van and medical tarp.

I feel like crying guys. I’ve made so much progress. I’m so frustrated this storm has had to hit past few months. My options are SO limited.

Would love to hear stories of severe cases only please and how they or you were able to do this.

 

[Judee]

Just found this but the print is tiny and I'm too tired right now to read it. I can try to come back tomorrow and do so but wanted to post it tonight. https://www.hccinstitute.org/why-at-home-dental-care-is-vital-for-homebound-patients/

Edit: Actually here's the website of the dentist that that tiny print at-home article talks about: https://joyfuldentalcare.com/chicago-il/in-home-dental-care/ (Maybe they know of other dentists that do that? Praying)

Also, I don't know where you are but a friend sent me this not too long ago. You put in your zip and select the category you're looking for and it helps to find agencies and charities in your area that may (?) be able to help: https://www.findhelp.org/

 

[sunshine44]

Just found this but the print is tiny and I'm too tired right now to read it. I can try to come back tomorrow and do so but wanted to post it tonight. https://www.hccinstitute.org/why-at-home-dental-care-is-vital-for-homebound-patients/

Edit: Actually here's the website of the dentist that that tiny print at-home article talks about: https://joyfuldentalcare.com/chicago-il/in-home-dental-care/ (Maybe they know of other dentists that do that? Praying)

Also, I don't know where you are but a friend sent me this not too long ago. You put in your zip and select the category you're looking for and it helps to find agencies and charities in your area that may (?) be able to help: https://www.findhelp.org/

Thank you so much Judee!
I will look at these tomorrow

 

[Judee]

The article is over two years old so maybe the following isn't still true but she said in that interview:

"I’ve been as far north as Waukegan, as far west as Crystal Lake and St. Charles, as far south as Harvey and, obviously, to the lake. I’m even going to Lemont next week. But, really, I go where there is a need. And, if there’s a need in other parts of the state or across the country, I have an extensive network of other oral health providers that I can contact."


Edit: I still can't read the whole thing. I just did some skim reading but it sounds hopeful.

 

[lenora]

I do know one thing: Dental care is even more important as you age.

Sunshine brings up a good point about getting in-home care. Judee has provided information that agrees with that.

I'm 76 and moving on, but the one thing that I never go without is dental care. Right now, for the most part, I'm on top of it. But yes, what about all of the people like @sunshine44? There is a need.

I have two abscesses that were rapidly causing problems and my dentist was excellent....but I know he'll never do home care. Each of us should check into our state and what it has to offer (if anything).

True, dental care is expensive and 99% of all insurance plans don't cover it. Still, it's worth it, it really is. May I suggest tools like a WaterPik (after each meal...and be careful where you're spraying), followed by an electric toothbrush. They're wonderful tools and will save you a lot of money in the long run. Both make wonderful gifts that won't break the bank.

Do take care of your teeth.....they're incredibly important to us, even if we have dentures. There are products that can be prescribed by the dentist for dry mouth, cavity protection and they're coming up with even more. I read the other day where labs are now growing teeth from gums. Imagine! Yours, Lenora

 

[Zebra]

Hi, @sunshine44

You ask a good question!

I think, although I could be mistaken, that @Howard has traveled to the dentist in either a gurney or reclining wheel chair.

I may be totally misremembering this, but I tagged him here so he can chime in one way or the other.

 

[Howard]

I think, although I could be mistaken, that @Howard has traveled to the dentist in either a gurney or reclining wheel chair.

That's correct. I had the "at-home" dentist experience ... I've also experienced the "in the nursing home" dentists, and then also, I've been transported to the dental office.

@sunshine44 and I have discussed dental options in the past. Either having available money, or a decent insurance plan seems to be necessary.

Beyond that, finding an office that caters to the disabled, helps tremendously. Fortunately where I live (in Arizona) there are two such offices that qualify under this heading.

I suspect her access may be more difficult to come by, based upon distance. However, I do suspect she may be able to find someone in the nearest major city. Although, and again, getting there is likely problematic.

 

[sunshine44]

That's correct. I had the "at-home" dentist experience ... I've also experienced the "in the nursing home" dentists, and then also, I've been transported to the dental office.

@sunshine44 and I have discussed dental options in the past. Either having available money, or a decent insurance plan seems to be necessary.

Beyond that, finding an office that caters to the disabled, helps tremendously. Fortunately where I live (in Arizona) there are two such offices that qualify under this heading.

I suspect her access may be more difficult to come by, based upon distance. However, I do suspect she may be able to find someone in the nearest major city. Although, and again, getting there is likely problematic.

Thank you guys for the ideas and sharing. Yes, as he stated, it’s a rather complicated situation.

As of right now, the volunteer nurse who helps me once a week and my friend whom is a former emt, have told me my vitals did not do well during recent car transport to a dr. And they don’t want to try to transport me again without a better situation. So, I either need o2 or ambulance transport (which isn’t happening).

I am taking baby steps towards these things but it’s all very hard.

 

[lenora]

Too bad @sunshine44. One thing though.....we've been through many insurance policicies in our lives and I must say that I don't believe a "good" dental plan exists.

The best you can do is the insurance card they provide at the dental office. Bottom line: It really pays to take care of those pearlies, and especially gums.

 

[Judee]

I can't read this right now but thought it might be interesting:
https://www.researchgate.net/public...gic_Encephalomyelitischronic_Fatigue_Syndrome
That one was written by a dental professor at Rudgers in NJ.

Can't research it now but wonder if he knows some dentists. ??

Old post on healthrising but she talks about it too: https://phoenixrising.me/myalgic-en...-yet-one-more-challenge-for-those-with-mecfs/ (Again, I'm having a difficult time reading things today so only read a little.)

 

[brenda]

I've been doing a lot of reading recently, since a heavily amalgamed molar/wisdom tooth has been disintergrating, including the mercury. The root looks good however, and I do want to keep the tooth if possible as I have already lost 5.

For the past few years, maybe 8, I have not been attending any dentist, since I studied the alternative view that many treatments are un-necessary. One thing is to stop using commercial toothpaste which is not good for the teeth. I have been making my own since I read that and in the 8 years, a few specs of black have not increased in size nor have I needed scraping.

The past year since I moved though, I have been collapsing into bed regularly without the energy to clean my teeth so there is some neglect. I am on it though and have pulled out my electric toothbrush again. I have also added some ingredients to my tooth paste which is diatomacious earth and adding calcium from egg shells, magnesium citrate and zinc but have ordered another product or two to add.

https://www.calciumtherapy.com/ for some things though I am not happy with with the indisclosure of some of the ingredients.

I have ordered some Hydroxyapatite (HAp) In its natural form, is a form of calcium that makes up to 97% of tooth enamel and 70% of the dentin of teeth.

I also have started rinsing again in sodium bicarb plus trisodium phosphate (look up a video on it on youtube) which seems to work at remineralization.

 

[jstefl]

I have suffered with dental problems almost all of my life. My dentist finally prescribed a Chlorhexidine Gluconate oral rinse. I just swish a little around in my mouth twice a day, and my dental problems are greatly improved. The cost is less than $ 10.00 a month if your insurance doesn't cover it, definitely less than expensive dental work.

 

[Judee]

So this website lists that same dentist I linked above: https://www.geriatrichousecalldentistry.com/

Not sure if this is a separate company from that one but thought I'd post it anyway: https://housecalldentists.com/healthcare-partners/

Edit: That last link looked like it was only New York and San Francisco but under their About page in the last paragraph under "Why Now" it says they are expanding to Seattle, Phoenix, and Chicago.

 

[Judee]

My dentist finally prescribed a Chlorhexidine Gluconate oral rinse. I just swish a little around in my mouth twice a day, and my dental problems are greatly improved.

So I have state insurance and getting my dental issues fixed is taking a long time. (It's a long story.)

The dentist I saw today for a consult though did prescribe the Chlorhexidine.

Can you tell my in what ways your dental problems have improved using it? Also are you chemical sensitive? I am and I'm hoping I don't react to this?

Thanks for any info.

 

[jstefl]

For many years I needed to get my teeth cleaned every three months. I had complete surgery on my gums twice over the years as well as several additional spot repairs.

Now that I have been on the Chlorhexadine a while I have three cleanings a year instead oif four, and I could probably extend that a little more if I really had to. I still have a couple of deep pockets, but they haven't gotten any worse, so I haven't needed any additional surgery.

The most common problem is that extended use may turn your teeth green, That hasn't been a problem for me, and I have been using the Chlorhexadine for over 10 years now. I have had no other problems.

 

[brenda]

I saw a biological dentist yesterday, and he is going to take my amalgams out. I have had no dental treatment for about 10 years, no hygienist, and he kept saying that my gums are very healthy, no plaque and all teeth sound (apart from the disintergrating wisdom tooth which is going to be filled when the remaining bit of amalgam is out. Things just fell apart with that tooth this past year as I was neglecting them a bit due to stress of moving.

I do not use commercial products and make my own tooth powder and rinse. Good diet and quality water though.

 

[rpapen77]

I know this won't solve the problem of getting to the dentist, but I was wondering if you've heard of Silver Diamine Fluoride? It's supposed to completely stop tooth decay when applied to current cavities/areas of decay. I'm looking into it for my brother with severe ME. We found a mobile dentist that offers it. I'm not sure how widespread its use is, it's mainly studied for children because anesthesia/drilling would be too severe, but it's suggested for use in severely physically disabled populations as well. Also, it might be worth looking for "special needs" dentists in your area. My brother went to one when he was more mobile and they took his needs into consideration more than a normal dental office would, I'm assuming. They took a lot of time and care with us. I think it's generally geared towards developmentally disabled patients and autistic patients, but a lot of the sensory considerations they take for those conditions help ME/CFS patients as well!

 

[sunshine44]

I know this won't solve the problem of getting to the dentist, but I was wondering if you've heard of Silver Diamine Fluoride? It's supposed to completely stop tooth decay when applied to current cavities/areas of decay. I'm looking into it for my brother with severe ME. We found a mobile dentist that offers it. I'm not sure how widespread its use is, it's mainly studied for children because anesthesia/drilling would be too severe, but it's suggested for use in severely physically disabled populations as well. Also, it might be worth looking for "special needs" dentists in your area. My brother went to one when he was more mobile and they took his needs into consideration more than a normal dental office would, I'm assuming. They took a lot of time and care with us. I think it's generally geared towards developmentally disabled patients and autistic patients, but a lot of the sensory considerations they take for those conditions help ME/CFS patients as well!

Thank you so much

 

[brenda]

Silver Diamine Fluoride

My biological dentist advised against using this product with my sensitivities. The temporary filling has holded but the molar next to it has started to crumble. I am feeling very depressed about it.

Anyway, I feel my dentist let me down as they could not fit me in to a time convenient for me before Christmas so I have to get through eating on the other side of my mouth where three molars are missing from a long time ago. The temp filling has affected me but it is bearable. Increased inflammation. So now I am needing two permanent fillings and two amalgam removals but not well enough to travel at the moment.