Topic: Severe Dental Issues---Appointment to see dentist tomorrow, need help
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
[So sorry for the length!]
As a result of Lyme & co, I have Sjogren’s Syndrome severely. It’s an autoimmune condition that causes dry mouth, eyes, vagina, joint problems sometimes inner organ destruction. My mouth and eyes are extremely dry, as the condition destroys the glands that lubricate the mouth, eyes, etc. The damage is long done.
As a result, I have severe dental destruction. I’ve lost 3 molars, the 2 upper teeth behind the eye teeth are dissolved on the tongue side and I will surely have to have those two removed, as there are only 2 tiny points of those 2 teeth sticking above the gum on the tongue side (which are hurting my tongue terribly).
In addition, I have decay, bad cracks (especially 2 upper front teeth), and erosion in my teeth everywhere. Who knows what I can save of the remaining teeth? It all looks terrible.
I have no chewing ability at all. I can only eat liquids, some soft things, and blended foods. Even those are difficult due to the lack of saliva.
Many people with Sjogren’s lose all of their teeth eventually. I don’t even want to face this mess at all, as I have no idea what the fixes can be. It will be long, painful, and expensive in the extreme. But I have to before it gets worse. Plus, I can barely eat! It’s all overwhelming beyond belief.
Any surgery, etc. can possibly spread the Complex Regional Pain Syndrome/ Reflex Sympathetic Dystrophy. Spreading that would be the end of me.
2 of the missing teeth are the 2 last molars on one side, so at least 1 of those can’t be a bridge, as there’s nothing to attach it to.
What the heck are the possibilities?? It seems like: • 1-5 implants(!!) • bridges for the rest?? I know the dentist will lobby for implants.
I have no idea about the other teeth. Even with crowns, people often get decay below the crown eventually.
I’ve read all the threads about dental issues. I have to see what the dentist recommends, but he doesn’t understand the depth of my medical issues (and despair!), although I did a write-up for him. Any suggestions/info??
I just want to not even go at all. I’ve had so many dentists and my very long-term hygienist refuse to work with me anymore, refuse to give me a plan, be very dismissive, then my last dentist died. I’m so traumatized by it all. I used to have great dental health, and took care of my teeth. Long gone now.
Help! Info and moral support greatly needed . Thank you!
Posts: 3771 | From around | Registered: Mar 2008
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Rumigirl,
You will handle this with grace and dignity. You know of no other way for you are a class act.
You have always grabbed the bull by the horns. A real fighter. You give us all hope through your courage.
I have seen Internet photos before and after procedures. If you have a good dentist and a good dental plan, they can really work wonders. I hoping that is the case for you.
Good luck tomorrow and please keep us posted.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Wow - sounds very difficult. You will need to discuss a plan with the dentist to have a teeth set-up in the future so you can eat.
Posts: 13116 | From San Francisco | Registered: May 2006
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Rumigirl, I am so sorry for all you have to deal with. This has to be so very trying and anxiety provoking for you.
I don't know what part of the country you are in, but I know of a very good dentist in northern NJ, who was able to help another Lyme patient with severe dental and jaw problems. I am going to PM you his information.
He is the Go To for ozone treatment and teaches it to dentists all over. He is also a naturopathic doctor and uses homeopathy. Even if you live in another part of the country, perhaps you could request a phone consult?
I wonder if your LLMD or a local lyme support group could offer guidance or recommendations of good dentists or oral surgeons in area who work with chronically ill.
Bartender Bonnie was right. You will figure out a sound plan and get through this. Many here will be thinking of you and please keep us posted on things. Good luck to you.
Posts: 2386 | From New England | Registered: Aug 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
rumigirl, I just can't image that a Lyme & co immune compromised body accepting implants.
I've lost 6 crowned teeth in the last 3 yrs. I thought when I found a LL dentist in my city that I was only needing my one root canal removed?
Wrong! Between Lyme and bad dentistry over the years all my crowns (12) had horrible infection and decay under them. Yes, of course there was bits of mercury under them too.
My other 6 crowns have been replaced and cleaned out and hopefully will survive.
I'm looking forward to partials and being able to do some chewing by the end of this year. Be sure to read this...
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, all. I will respond further later. I am soooo in despair. It's really, really bad. More later. Have to make appts.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I'm so sorry, Rumi! I hear ya... I just lost a molar about 6 wks ago, then had to have another crown, and now some other molars are exhibiting pain.
I also have Sjogren's and I worry about the future. It's bad enough on my side and I don't have the CRPS to worry about!!
I'm not willing to spend $4-5 thousand dollars a tooth for implants .. and I seriously doubt my body can handle an implant. I probably can't handle a bridge either...still way too expensive.
I hope you can meet up with the dentist and figure out what to do. My DDS doesn't understand my MCAS either, so I really fear getting a root canal. I don't think I would get through it without a severe reaction.
Keep us posted on how you are doing. We care!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Well, the dentist is very knowledgeable (he taught dentistry for decades at an Ivy-League University). He is also very patient, and is "holistic," which is to say in numerous ways, but, as some others do, does recommend root canals & implants.
BUT, my situation is very, very difficult. I only have 1 lower molar at this point and need to lose that one, too. He thought that there was a 40% chance of saving it, but I don't think it's a good idea. It's my 1 root canal!!
He said the molar next to it that I just lost in June was doing better than this one, and that it could have been saved with a root canal (I know, I know).
There's nothing to attach a bridge or anything to on either side if I have this last one removed. And I can't eat much this way. So after I take care of the worst stuff, it's either implants or never able to eat much again!
And every blasted tooth has so many problems, it just isn't funny.
And the dental situation is only 1 very small part of what's going on that has to be fixed, to the extent possible, and/or endured. But that's another post.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by dbpei: Rumigirl, I am so sorry for all you have to deal with. This has to be so very trying and anxiety provoking for you.
I don't know what part of the country you are in, but I know of a very good dentist in northern NJ, who was able to help another Lyme patient with severe dental and jaw problems. I am going to PM you his information.
He is the Go To for ozone treatment and teaches it to dentists all over. He is also a naturopathic doctor and uses homeopathy. Even if you live in another part of the country, perhaps you could request a phone consult?
I wonder if your LLMD or a local lyme support group could offer guidance or recommendations of good dentists or oral surgeons in area who work with chronically ill.
Bartender Bonnie was right. You will figure out a sound plan and get through this. Many here will be thinking of you and please keep us posted on things. Good luck to you.
Thank you, dbpei, I know this dentist. Many years ago, when my husband needed a root canal (in spite of my protestations), I sent him to this guy to do ozone with the root canal. But the root canal failed and had to be redone.
(You know, you can't necessarily get your spouse to do what you think it right).
Thank you for all your suggestions. I actually do think this guy understands the impact of the medical issues on the dental. And he can handle the situation. It's just that there aren't many good options for some of the problems---esp the missing teeth.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by map1131: rumigirl, I just can't image that a Lyme & co immune compromised body accepting implants.
I've lost 6 crowned teeth in the last 3 yrs. I thought when I found a LL dentist in my city that I was only needing my one root canal removed?
Wrong! Between Lyme and bad dentistry over the years all my crowns (12) had horrible infection and decay under them. Yes, of course there was bits of mercury under them too.
My other 6 crowns have been replaced and cleaned out and hopefully will survive.
I'm looking forward to partials and being able to do some chewing by the end of this year. Be sure to read this...
Thank you, Pam. I saw this before, but thank you for reminding me. I wish I could see him! But he's across the country, and I can barely leave the house at all.
I'll be interested to hear how it goes for you.
This stuff is sad and awful. After spending my whole life since I was a small child focused on my health and the health of my clients---and I'm a mess every which way physically!
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
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Member # 15091
posted
Thank you, Robin, Bonnie, and Lymetoo.
Yes, Sjogren's is a horror. I hope your dental situation goes better than mine, Lymetoo. It's hard to beat mine.
On another dental note: Decades ago I was diagnosed with cavitations by transdermal screening, but I never took care of them. Too much else to take care of. Plus, the dentist who does it is 1 3/4 hours away..
I probably need those handled, but if ever, it would be after all the other big stuff. It's unlikely I'll ever have the capability anyway at this point. I probably have way more by now, due to so many more extractions! I'd only had wisdom teeth taken out at that point.
Posts: 3771 | From around | Registered: Mar 2008
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Rumigirl, sorry for your situation... It's hard to define what is big problems and small problems, specially after reading the article Pam posted.
Dr. K believes there is a direct connection between teeth and health condition of patients.
It's a bit like the health of the mouth = health of the whole body.
My lyme dr can do a lot of energy testing (like dr. K does). And he urged me to treat my teeth, since lyme was still active, long ago.
After lyme disappeared from our lives (daughter and I), we stopped most treatments, fed up from everything.
But my teeth (dead ones) forced me to look at my mouth again. About 5 years after lyme was gone, back I was to treat my teeth, again forced by my lyme doctor.
I do think there must be a connection, because most healthy people I meet have good teeth, most chronic ill people have bad teeth...
the problem is that there are no perfect solutions. I got 2 partials now, I refuse to get bridges (because of probably infections under the bridge sockets), to get implants (because I have no more healthy jawbones anyway).
They do not look great, but they work reasonably well. I can chew harder stuff, clean well all remaining teeth, etc.
Since I got my ionic tooth brush, I can even clean my gums, and the whole mouth looks much better than it had been the last decades. Even with missing teeth....
My sister in law had Sjogrens, and it seems horror indeed.
I do think somehow EMRs have a big role on hormone malfunctioning, not only pathogens (my sis in law has no lyme). After giving birth for the first time, her hormonal problems got better and she no longer suffers from Sjogren's....
Posts: 6199 | From Brussels | Registered: Oct 2007
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Rumigirl
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Member # 15091
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Thank you, Brussels.
Unfortunately, the damage to my salivary glands and tear glands is already done; there is no fix for that. So the dental and eye problems will continue no matter what.
In addition, the unquenchable thirst that I've had since the late '70's as a result of that, plus electrolyte problems, has lead me to drink diluted juice, which further wrecks my teeth. Nothing else I've tried works, except potassium supplements, but if I have much of that, I get horrible, painful gas, plus severe allergic symptoms (too alkaline).
Then, there's the diluted kombucha I drink, since I haven't had IV glutathione anymore, and that also wrecks my teeth. I somehow need to stop both, but need fixes so I can get by without them. Sigh.
I was reminded online that Sjogren's patients don't manage with dentures, due to to the severe lack of saliva. So . . . what the blazes??!!
Plus, nothing with which to attach partials to on some teeth. I am between a complete rock and a hard place!
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