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scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 11/14/2009 11:45 AM (GMT -7)   
Hi All, I apologize for once again being so absent.  I'm just a complete mess all around these days and can barely function. 
 
Anyway, I was wondering if anyone else has TMJ or knows how it can affect LD.  Long story short, I've been sick for many years and was only diagnosed with LD last February.  Even with very aggressive treatment, I've not made much progress.  My wonderful llmd sent me to a specialist to do a root canal investigation to check for any hidden infection.  Well, they did a CAT scan and it turns out the root canal is fine but I have TMJ and a possible sleep disorder.  I was told that in some people, TMJ can cause systemic inflammation, neck pain, weakening of facial muscles, etc.  Treatment prescribed is extremely expensive and there is no way of telling how much the TMJ is contributing to my symptoms so therefore is not guaranteed to improve my functioning even if it does correct the TMJ.  I was very impressed with this doctor and he came recommended but I have to wonder how much of it was a sales pitch to get me to purchase the necessary mouth guards
 
Oh yeah, I'm also going to do a sleep study next week.  
 
Any thoughts on this would be greatly appreciated. 

Post Edited (scorpio1960) : 11/14/2009 11:51:59 AM (GMT-7)


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/14/2009 12:13 PM (GMT -7)   
I think TMJ is involved in LD because it is a complicated joint. NO different that having, elbow, knee, neck problems, etc. I just wanted to say that I wore the appliance that you are speaking of for about two years. (two long years) and did not get much improvement and as you say VERY expensive. I think the appliance itself was around $2,000. I believe now that I had LD then but did not know it as I see alot of Lymies have TMJ issues.  D

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 11/14/2009 1:02 PM (GMT -7)   
Hey Scorpio,

I'm sorry that you are still struggling. I think it's a good idea to get the appliance to save your teeth from getting worn down. Grinding down on your teeth can cause many problems not to mention, very bad headaches too.

I have TMJ and at one time, I had it so bad that I would wake up with my entire jaw shaking uncontrollably with my teeth chattering together. It was awful.

Why don't you call different dentist offices and ask them how much a splint would be. I paid $500.00 for mine a few years ago. $2000.00 sounds very expensive to me. A splint is not hard to make and most any dentist can do it after getting impressions of your teeth.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 11/14/2009 2:11 PM (GMT -7)   
Scorpio,

I have had TMJ for many years. I had jaw clicking and pain, periodic lock-ups, and terrible headaches that would rage up the side of my head and down my neck. Often this was accompanied by excruciating pain radiating across one side of my face. In the early 1990s my jaw locked shut (I could open my mouth less than 1/2"). I saw dentists, TMJ specialists, chiropractors, surgeons, and each had different advice for me. It was difficult to know who to listen to, so I followed the path of least resistance and listened to those that told me it would clear up on its own given time (and chiropractic adjustments). After a year of not being able to open my mouth I decided to get another opinion from a well-known (and expensive) TMJ specialist. His work-up indicated that I needed surgery. After surgery I spent months undergoing physical therapy. Ever since then, periodically, I've had to get back into physical therapy to help with the pain (myofacial, jaw, and head), but my jaw is much better than it used to be. I also have severe sleep apnea. I've been told that a jaw splint could help with the apnea, but my TMJ doctor and the physical therapist both advise against it because of the jaw joint problems I've had. Based on my experience and what I've been told by the doctors and other professionals I saw, I would just say that if you are contemplating a splint, be sure you're working with an experienced, credible specialist who understands your situation thoroughly. Be sure that you understand what the split is supposed to accomplish, and what problems it may cause. If all you need is a split to stop you from grinding your teeth, that's a pretty simple thing. But if the splint is meant to help with the TMJ, if it were me, I would not make price a primary consideration. It's too easy to mess up a joint, and the jaw joint gets a lot of use.


Good luck,

Rose
I have Lyme; it doesn't have me.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 11/14/2009 3:06 PM (GMT -7)   
Scorpio,

I seriously do not think that a splint will hurt your jaw joint at all. It is best to get one made so you don't have more problems down the road. I've had TMJ for years, over 10 years now and a splint did help me tremendously. Did it fix my TMJ? No, but it does stop me from grinding my teeth down to the bone and causing further damage. I've even had an orthodontist tell me braces would help. Well, they didn't help one bit, so don't go spending all kind of money on other things.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 11/14/2009 3:09 PM (GMT -7)   
Rose,

What problems did you have with your splint? In my opinion, I'm no doctor, but I see more problems occuring if she doesn't have one made.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Cmacaran
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 11/14/2009 5:05 PM (GMT -7)   
I had horrible TMJ, did the appliance, no help. Finally I was greatly helped by a cranial sacral chiropractor and breathing exercises before sleep. I don't wear the mough thing any more. I sleep fine. I only have occasional problems now and even then the pain is minor. A good Cranial sacral chiropractor can help a lot, although it did take many sessions.

Don't eat bagels or hard chewy food.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 11/14/2009 5:08 PM (GMT -7)   
Thanks for all the replies. I'm going to re-read them all tomorrow when I'm hopefully feeling a little more clear headed. Yeah right....lol

Anyway, I went to the Gelb Center in NY. They are very experienced (AND VERY EXPENSIVE) TMJ and sleep specialists. Believe it or not I was quoted $2,950 for one splint and was told that I will need one for day, one for night and possibly something if I actually do have a sleep disorder. Unbelievable is an understatement! My insurance said it will cover 80% out of network for TMJ but even the assistant at the center said not to take for granted that they actually will reimburse the 80% because they often utilize their own guidelines and limits to pay less. Supposedly I will not know until after I pay for and submit the claim forms. Who the heck has this kind of money, especially when on disability and treating Lyme?

I don't suffer wtih what I believe are the typical TMJ issues such as face pain, jaw clicking, jaw locking or trouble chewing but then again what do I know. I do get earaches, lightheadedness, dizziness, cognitive issues, sinus inflammation (no nasal congestion) and fatigue. Nothing about me is typical anymore. Ugh!! My face has also become asymmetric the past year or so and seems to be getting worse. The facial thing is becoming very obvious and is really freaking me out the most.

One of the things I liked most about this doctor was what appeared to be his knowledge of TMJ in relation to immune problems. although I'm not too sure that's really important in the scheme of things since I'm being treated by a llmd for lyme and only need him to correct the TMJ issue.

If anyone knows of a good TMJ center or specialist in Manhattan where I can get a second opinion, please let me know. I know I have TMJ but can't spend $6,000+ to correct it. I'm pretty sure we can mention names here because it has nothing to do with the treatment of LD. After what I've been through, I'm not too comfortable choosing someone without a personal recommendation. I've been mislead before by doctors being named the "best" and "top".

Thanks again for all the information and taking the time to respond. I hate to sound so negative but it certainly never seems to end for us.

Hope everyone manages to enjoy the rest of the weekend.

Cmacaran
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 11/14/2009 5:17 PM (GMT -7)   
scorpio my TMJ cranio sacral chiropractor is in Manhattan. If you would like I can e-mail you his information. I highly recommend him. I think he was $75 a session after the first session which was more.

Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 11/14/2009 6:26 PM (GMT -7)   
I think the chiropractor specialist is a good idea. I now have a wonderful chiropractor who is helping with my neck, face, and jaw pain. Before my surgery my face was asymetrical too. It was explained to me that the cause was my use of more muscles on one side than the other, compensatory to the weakened joint. The disfigurement dissipated slowly after surgery. That is encouraging because I take it to mean that the joints on either side of my jaw are now working together. CG, I do not have a jaw splint. Grinding has never been a significant problem for me, so I didn't need one for that. I did not mean to suggest that someone who needs such a splint should not get it, I just think if you have jaw joint problems that may not spring entirely from grinding your teeth it is important to understand how a splint could impact your joints. I could be a candidate for a splint to alleviate the sleep apnea, but those splints pull the lower jaw forward to create a larger airway. My TMJ doctor advised against wearing someting that puts my jaw in an unnatural position because it could be detrimental to my joints. I am sure that is not true for people who do not have a history of jaw problems. When I priced a jaw splint it was $2,400. The kind I looked at was adjustable. That way if my situation changed, or if one position did not work, I would have the option of having it adjusted until a comfortable position was found. That seemed like a good idea to me. Scorpio, did your doctor explain what the purpose was of having daytime and nighttime splints?

My daughter also has TMJ. She has decided to undergo jaw reconstruction. If I were younger, I'd do that too. She grinds and currently wears a drug store splint for that. The splint does not resolve the pain, clicking, or jaw-strength issue. To realign her jaw, she will either have surgery or wear an experimental internal jaw splint that will slowly reposition her bite. During and after that process she will have braces to move her teeth so that they line up with the new jaw position. The whole thing will cost her in excess of $10,000, but after watching me struggle for her whole lifetime, she decided to do it.
about insurance - in my experience TMJ claims can fall into a no-man's-land between medical and dental insurance leaving the patient to pay it all. I'd be very careful to know every step of the way how the claims are being submitted to insurance. Unless you have fantastic dental insurance, it is very limited. If there is any leeway in diagnosis code designation, I've found it's best to have it qualify for my medical insurance.

I never heard of any correlation between TMJ and immune problems, and until reading posts on this site, between TMJ and Lyme. I think my TMJ started after I wore a night brace with neck strap as a child as part of orthodontic treatment. That is when my jaw started clicking and locking up. I'd be interested to learn more about these other causes.

Rose
I have Lyme; it doesn't have me.


JennInPA
Regular Member


Date Joined Sep 2009
Total Posts : 228
   Posted 11/14/2009 6:43 PM (GMT -7)   
I had TMJ about 15 years ago, my jaw locked shut and I had it manually fixed, i don't remember too many details because I was young. But what I do know is that I had no problems after that............. until Lyme. Now my jaw clicks all day every day and sometimes I have to open and reopen until I feel it's in the right place. I had my chiropractor adjust it yesterday and it felt amazing after. Unfortunately it only lasted a few hours. I see her weekly though so she will keep adjusting it and we'll see what happens.
“You must be the change you wish to see in the world.” -Gandhi

http://lymeactually.blogspot.com/


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/14/2009 7:06 PM (GMT -7)   
Jenn - I wonder if that is happening to you because of Lyme inflammation in your joints. I also wonder, based on what you say and also on my own experience with the chiropractor, if the reason we have difficulty holding an adjustment is because of joint swelling caused by Lyme. I see my chiropractor weekly, too. That seems to be what it takes to keep my pain at bay.

Rose
I have Lyme; it doesn't have me.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 11/14/2009 8:07 PM (GMT -7)   
Rose, I'm glad the surgery successfully corrected the problem and hope the same for your daughter.

I do grind my teeth and also have an overbite. I don't even remember if the doc explained why I need both the day and night guard but I plan on asking him when I go back with the sleep study. The claim is being submitted through my medical insurance, not dental. They already told me I fortunately have coverage for TMJ and now it's just a matter of how much they will reimburse me. They are suppose to pay 80% of out-of-network expenses but the center said insurance companies often try to get around this by using their own cost guidelines and not necessarily reimbursing based on what the doctor charges.

I might not be correctly relaying what the doctor told me about how TMJ can affect the immune system or contribute to other conditions. These days it's very difficult for me to get anything straight. lol I do know that he seemed to have a pretty good understanding of LD and the immune system. The dentist who my llmd referred me to, who in turn referred me to the center cited research that Gelb has done but I don't even want to attempt to repeat what he told me. LOL I like that the center practices holistic dentistry and takes an integrated approach to treatment. I don't like the outrageous prices. lol

Jenn, Hopefully at some point the adjustments will last longer and longer.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/14/2009 8:28 PM (GMT -7)   
Scorpio,

The place you are going sounds like a place I would like. It's wonderful that they take the time to explain things to you. I hope when you find out about the day guard/night guard issue, and also what they'll do you will share that information. I'd like to pass it along to my daughter. She hasn't put anything in motion yet, and the more she knows, the better able she will be to make a good decision. Good luck with your appointment.

Rose
I have Lyme; it doesn't have me.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 11/14/2009 9:10 PM (GMT -7)   
Thanks Rose. If you want to check out their website it's www.gelbcenter.com. If I can get confirmation that my insurance will definitely pay 80%, I'm going to stick with them and hope for the best.

If anyone has had a bad experience with The Gelb Center, please don't hold back and let me know.

blessings723
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 11/14/2009 9:41 PM (GMT -7)   
I have TMJ and I am using a night gaurd- actually it is becoming more of an "anytime" guard. It seems now that i wear it more i do not have as many jaw problems. I have noticed gradual improvement over the past month.
I refuse to stay sick! Period. 
 
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 11/14/2009 10:51 PM (GMT -7)   
finding721, I'm glad you're starting to see improvement. I have a feeling that one appliance/guard might be all I need but the center is going to try to sell me three different ones. We'll see how this plays out next week. I was told that I will probably need to wear one for a few months continuously and then they will gradually taper me off. BTW, I love your signature line. lol

blessings723
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 11/15/2009 2:10 AM (GMT -7)   
Three? what's the third one for? LOL. yes, they do try to make their money don't they? I really think the more you wear it though the more you will be aware if it is working or not working for you. My dentist told me to let them know right away if it wasn't so we could try something else. So far so good.

You're the first to comment on my signature :) I kept trying to think of good quotes like everyone else and got frustrated! LOL so that just seemed to fit my mood.
I refuse to stay sick! Period. 
 
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 11/15/2009 2:17 PM (GMT -7)   
Rose,

Thanks for explaining. I understand now.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 11/15/2009 3:10 PM (GMT -7)   
finding721, So far I was told about one night-time guard and one day-time guard for the TMJ and I believe there's another appliance for the sleep disorder. Now that I'm writing this out I can't imagine how I could wear two different guards at night although I'm sure they will push to get me to buy all three. lol I'll get it all clarified next week after the sleep study. The hard sell I was given for the guards was the only thing that put me off about the center. I'm wondering if the girl trying to get me to commit gets a commission.

CG, I love your blog and am once again impressed by all you do. Thanks.

thePlum13
New Member


Date Joined Nov 2009
Total Posts : 5
   Posted 11/15/2009 3:37 PM (GMT -7)   
I am a dental hygienist who worked with TMJ patients when I was working.  It is very complicated. The Gelb Ctr.is wonderful but you are getting the Cadillac of tx.  I'm sorry I don't know a name of a TMJ specialist in Manhatten but most good periodonitist or oral surgeons are the place to go.
Trying a night guard (splint) is a good place to start to give you some relief.  It gets the muscles out of spasm so they can rest, while protecting your teeth and will help the headaches.  You can put it in your mouth any time during the day if you dfind your self clenching.  My daughter's is worse as she is commuting to work.  Of course, she does not listen to her mother to pop the guard in!  She has already cracked a tooth.
 
Sometimes surgery is necessary but I would start with a less costly guard.  PT, chiro, etc are difficult with Lyme becsue the adjustment don't hold.  The only one I would Rx  is craniosacral therapy ans they should give you gentle exercices to do everyday.  This actually helps the Lyme infalmmation as you feel a little, or a lot, of detox after as I did.  Going thru surgery is difficult for us Lymies but if it is a structural issue it may be necessary.
 
Meanwhile no  hard foods, bagels, raw veggies, etc.  Lots of good soups.  I would also add acupuncture if you can afford.  Try a few sessions.  If you have not the issue too long Acup. seems to help but not if it is a long chronic problem which many Lymies have.  It really helped my back pain but not my long aching shoulder pain.
 
Hope this helps.  Please feel free to contact with further questions.  You are hearing various opinions because TMJ is a very tough issue to resove and is different for everyone.  A good bite adjustment is imperative.
 
 
 
 

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 11/15/2009 4:00 PM (GMT -7)   
thePlum13, Thanks for all the great advice. Do you believe TMJ can cause sinus inflammation too?

With any luck I'll find out that I'm covered and will be able to go forward with the Cadillac of treatment. lol I guess I'll start with whatever they suggest as far as the night guard and if my coverage does really reimburse me 80%, then I'll go for the whole shebang. LOL

The center also offers chiro and acupuncture but I'm not well enough right now to get anywhere on a regular basis anyway. When I am, I plan on taking your advice and am going to try the chiro cmacaran suggested.


Thanks for all the responses and info. I'm now confident that I'm at least headed in the right direction.

thePlum13
New Member


Date Joined Nov 2009
Total Posts : 5
   Posted 11/15/2009 4:25 PM (GMT -7)   
Its possible the TMJ is causing sinus congestion. Just think that the head and neck are not "flowing" as they should due to inflammation or structural defects, plus the weakend immune system. Do you detox and have you eliminated gluten and milk products? Milk is very bad for the sinuses

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/15/2009 4:44 PM (GMT -7)   
Lots of good information here. thePlum13, craniosacral therapy is what I get periodically when I have TMJ issues. It is very gentle and soothing. Part of the therapy was training me how to hold my mouth and tongue so that they don't cause tension. I also have exercises to do at home that help relax muscles. I've never tried accupuncture, though it sounds like an interesting possibility. I was aware that I could get sinus pain as part of the TMJ inflammation, but not that it could also cause sinus congestion. Not sure how to address that beyond eliminating gluten and milk products (already done).

Rose
I have Lyme; it doesn't have me.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 11/15/2009 5:19 PM (GMT -7)   
I have eliminated milk products and tried a non-gluten diet for a period of time and it didn't seem to have any effect. The llmd recently had me on detox meds that didn't help either. I have to admit that I'm not too good about doing the detox baths. I just don't have the strength.
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