posted
I'm scared. I'm beginning to wonder if my jaw symptoms are really Lyme, or if my doctors might have missed full-blown lockjaw?
I experience this near constant 'pulling' sensation in my lower jaw (a contraction?), as if my jaw is constantly being pulled upwards against my will. I've lost gum tissue in this area. My teeth are all sawed down in this area. My tongue is often white or greyish-white when my symptoms are most severe, and yogurt/kefir make this symptom worse, not better.
My neck, upper back, and the base of my skull are always stiff.
No fever, but sweat attacks are frequent.
Years ago I experienced air hunger, palpitations, diarrhea.
Nothing ever grew when I made them culture my mouth because of this symptom, but would this even show up on a culture if it's in my nervous system?
Would I be alive if I've had tetanus this long? I've had this symptom for at least 6 years and counting, and nobody else on here seems to have this symptom...
Posts: 495 | From USA | Registered: Mar 2010
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posted
It is possible to have both a dental infection and lyme and coinfections.
Cavitations is a somewhat controversial topic.
Hubby does not have quite the symptoms you are describing, but when he has bad symptom attacks he shakes so hard that all of his muscles lock up and he can't move or even speak.
Thankfully these attacks are much less frequent after years of treatment, but there was a period of months when he had these attacks multiple times daily -- that was just a couple of years ago and he was hospitalized for 30 days once trying to get the symptoms under control with both symptom meds and various oral and IV antibiotics.
If I was in your shoes, I would probably be looking for a good Chinese herbalist. I think they are much more in tune with the way the body functions than Western MD's. Accupuncture might be worth a try as well.
Another possibility would be a good massage therapist -- cranial sacral therapy might be helpful. Hubby has mild scoliosis and he needs at least monthly adjustments to keep him functional.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My wife had TMJ and ended up needing bi-lateral jaw surgery. About four years later we found out she had Lyme -- and most likely had it for 20 years, which caused her jaw problem.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
My wife had TMJ and ended up needing bi-lateral jaw surgery. About four years later we found out she had Lyme -- and most likely had it for 20 years, which caused her jaw problem.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
I have it, too. I bit one tooth completely off at the base and all of mine are ground down.
I take Buspar twice daily and that has helped a lot (thanks for the tips I got from all of you!)
Cranial sacral therapy was a wonderful help! I just can't afford it. Acupuncture helped a lot, too.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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Carol in PA
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posted
Has magnesium helped?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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lymednva
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Member # 9098
posted
I doubt it is lockjaw, or you would probably be dead by now.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I highly doubt lockjaw too. Babesia maybe.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Lyme and co-infections are notorious for causing bruxism (night-time teeth grinding). Many Lyme patients grind all night, wearing down teeth and putting tons of stress of the masseters (jaw muscles).
Try the Buspar, for sure. I know many Lyme patients who have found relief with Buspar.
posted
Thanks for your suggestions everyone. Thing is this isn't just about grinding my teeth at night. All day long I clench my teeth. I guess I do have TMJ to a degree; my jaw does click a lot. But whatever is going on in my jaw can be described, as with lockjaw, as a constant contraction of the muscles in my jaw required for chewing, only this sensation only involves my lower jaw.
I have metronidazole left over, so I may try taking some of that.
I just wanted to verify that this was Lyme and not lockjaw, and that lockjaw would be much more serious. I have OCD, so I have a tendency to clip my toenails and fingernails too short to the point where they bleed - so I was worried. Thanks again.
Posts: 495 | From USA | Registered: Mar 2010
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posted
Have had these symptoms due to Lyme/Borrelia also teeth actually chatter when driving car down bumpy roads on cold mornings. I think the latter symptom may be Babesia but not sure. Any the lock jaw sx are improved with magnesium oral and in bath as epsom salt- I use 3 cups in 6 inches of bath water and do this after 1 hr Dr B type work outs 3 x / wk. Rubbing the warm magnesium rich bath water over the jaw muscles- masseter, temporalis, etc. has helped me unwind this. Getting gum retraction on 1 side of mouth and teeth discoloration from multiple antibiotics and herbal supps like licorice perhaps but again not sure. See the dentist today for cleaning, I think he would laugh if I mentioned lockjaw as it is quite rare in younger folks in US due to our heavy immunization schedules. Mostly see in people older than 55 or 60 who did not keep up with 10 year booster shots. So magnesium and treating Lyme are what is helping me. FWIW.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I also have a similar problem, but I do not have Lyme. I do have an autoimmune disease called Crohn's.
I and am experimenting with the cause of my gum disease and the cause of the whitish film in my mouth. I am not finished with this experiment, but I do have some very preliminary results.
The most common bacteria involved with gum disease is Porphyromonas Gingivalis. This bacterium also hijacks the immune system to a certain degree to allow it to thrive.
If you throw in Lyme which also alters the immune response it can be a huge problem.
I know of one way to reduce it that I discovered by accident. I use Miracle Mineral Solution (MMS) as a Crohn's treatment. It had the additonal effect of greatly reducing this bacteria, so much so that the dental hygienist noticed the improvement.
MMS also will kill active form of Lyme, so you may want to just swish it around in your mouth to kill the local bacteria.
I am currently using frequency treatments on this bacterium, as an experiment. I do not have solid results yet, but I do not have the whitish film at this time. MMS will reduce the bacterium, but it will not eliminate all of it. It will reoccur over time.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Wow , I didn't know Lyme caused teeth grinding. Add that to my list of symptoms.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
I have very strong muscle spasms and contractions in the jaw area. This past year they have migrated into the lower jaw area. I also clench my teeth at night. I do not have the teeth wear that you have so it seems not to be as strong. I feel the tightness around the back of my ears, upper neck, cheeks, lower jaw. Apparently these are due to Lyme. I am treating with antibiotics, supplements, nightguard. My neurologist who is a movement disorder specialist helps with symptom management by injecting botox into the jaw muscles, which relaxes them immensely and also helps with the TMJ dysfunction. Hope someday this will pass. There are ways to manage these symptoms, treat the cause and manage at the same time.... good luck
Posts: 172 | From ohio | Registered: Feb 2010
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posted
I forgot to add that I take as much magnesium as I can tolerate. We also add MMS to my morning protein shake. I, too, use it in my bath water.
If I could afford it I would get the botox injections. They did wonders for my back pain!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
I'll have to read this twice (I'm not with it tonight), but thanks for all the ideas! That MMS sounds promising.
I tried magnesium a few times, can't say it did anything for this symptom, though somewhere on here I read it needs to be a certain kind of magnesium?
My teeth though...they look horrible. The wear from grinding them at night became apparent first. Then when Lyme really kicked in I began to lose gum tissue. I started flossing thinking that was the reason I was losing the gum tissue, but flossing only made it worse. My gums were so swollen, the floss cut through them like butter before antibiotics.
Dali said, " I feel the tightness around the back of my ears, upper neck, cheeks, lower jaw."
That's exactly where I'm feeling it, too. Wish I could try botox.
And tonight I was looking at my teeth and, I'm not sure how to explain this, but the part of each tooth closest to the gum is white (well, off white now), but the other half of each tooth looks transparent almost? Decalcification?
Posts: 495 | From USA | Registered: Mar 2010
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***It is important to sequence the genome of this organism because it is found in many locations within the body not only in the oral cavity also in the gastrointestinal tract, respiratory tract and in the colon, this has many consequences...
What's really freaky is that when my jaw contractions are especially extreme and my teeth are feeling especially wiggly, I tend to feel all bloated, almost like the bacteria in my gums is communicating with their relatives in my gut...
Posts: 495 | From USA | Registered: Mar 2010
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posted
Magnesium glycinate works best per dr B. I take 400 mg 2x/day.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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IckyTicky
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Member # 21466
posted
I have had the same problem... had it REALLY bad for years and it would seem to come and go in severity. I was miserable and had to tell myself over and over all day long to "unclench" my jaw.. and as soon as I stopped thinking about it next thing I know my jaw is all locked up again.
It's gotten a LOT better with treatment.
If it were actual lock jaw you would have other symptoms and by this time would be doing pretty darn badly.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Years ago a number of people were actually being diagnosed with lock jaw.. and sent to hospitals. It was very common in these parts before they knew about Lyme. Turned out they had Lyme, not lock jaw.
posted
Who would have thought...this is sooo wierd. I guess others are feeling what I am feeling, with wierd jaw symptoms.
I have had this symptom for many years (most of the time undiagnosed, so I never treated the cause).
I see a neurologist who is a movement disorder specialist. He knows little about Lyme...but I give him all my test results, etc (I am CDC positive after 23 years-first time the bands came up CDC positive was a few months ago).
I would suggest to those in extreme discomfort to get your "team" of doctors on board. My llmd really doesn't deal that much with my symptom management...he is treating the Lyme.
My neurologist (I had to find the right one...visited many), isn't to interested in the Lyme but he is good about symptom management with regard to the muscle contractions, twitching, etc. He has been trained to administer Botox, and this does give significant relief. It is expensive, but fortunately my insurance does cover twice a year treatment.
Most neurologists are not trained to administer Botox; some movement disorder specialists are, and this could help.
I have tried magnesium, vitamin B, etc for this and it has not worked (although I still take these for overall health). I also take a small dose of klonopin..it is addictive but it helps with bruxism and these types of ailments. While the botox is working (it's effect is completely local) I take a break from the klonopin (I taper off, and for me, it is not difficult-I know for some people it is)
I just received a botox injections Wednesday. It is kicking in; my muscle in the lower jaw area feel strange, they are still trying to contract. However it takes up to 2 weeks for the muscle to relax. Last time this happened I was in heaven...the contractions do return however, until the cause is removed, which apparently are these Lyme bugs.
There are ways to find relief while treating. In the end I feel we all become our own doctors and really need to feel what is best for our bodies.
I know some people would never get a botox shot becuase it is a "neurotoxin" from a bacteria, but many medications are harvested from plants and animals. My body feels that the antibiotics I am taking are much more difficult to deal with, and we know at some level they are toxic as well. Nourish the body with good foods, nutrition, and a positive attitude. Do not resign yourself, try to get treatment.
Good luck
Posts: 172 | From ohio | Registered: Feb 2010
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posted
Is this definitely Lyme though, or is it one of the coinfections? I have been positive for Lyme, bart, and babs, so all three.
I'm not sure I'd try botox for this, and Klonopin? No way. It worked for me for years (the only med that ever did work long term), but having to cold turkey it was probably what threw me over the edge with my Lyme to begin with, so I'll never take it again for fear I'll have to come off of it again.
Posts: 495 | From USA | Registered: Mar 2010
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posted
elizza try swishing hydrogen peroxide mixed with water around or listerine to see if that can lessen some of the sx's from infection process.
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
you can also put peroixide in ears to get to jaw infection lay on side and leave in ear 1/2 it may lessen the sx's.
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
Klonopin affects people differently. Never quit cold turkey of this one. I understand not wanting to take it; I was off of it for many months, but I have found that when my symptoms are very distressing, I get relief at low doses. I manage this with my neurologist; the key is tapering off, and also taking as low dose as possible.
I understand what you are saying. I don't think that that contributed to your Lyme problem though. I've never noticed any links between lyme and klonopin....the lyme has it's own behavior (as do the co-infections).
I just don't like to know there are people suffering with symptoms when with a good doctor and a good management protocol, symptoms can be alleviated during treatment. Also, the jaw is very important. I try to take care of my jaw joint...we need it....I have had tmj issues since before I have gotten Lyme so I am really conscious of taking specific care of that joint.
Keep treating, the above advice seems very helpful. Things will get better with treatment blessings
Posts: 172 | From ohio | Registered: Feb 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
My opinion is the severe muscle spasms are often from Babesia.
I agree, Mag is essential. It just hasnt' helped me with these symptoms. I still take it, I wish it were the cure for me. Unfortunately, it isn't "the cure" for my muscle contractions.
It may be the nature of the lyme or co-infection; it may be receptors are being blocked, sodium-channel proteins in the cell are malfunctioning. From what I've read on the forum, some people have gotten significant relief from magnesium. Others haven't. I feel better on magnesium...sleep well, calmer, overall sense of well-being. It doesn't seem to influence my throat contractions and jaw/lower face. Still taking though... We have to try all healthy remedies available and not lose the faith. We can always be one tiny step away from feeling better. Always try. blessings
Posts: 172 | From ohio | Registered: Feb 2010
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posted
I'm kind of thinking it might still be babesia, too. My sweats are horrendous, and sometimes I can be out on a hot and humid day and do fine (just slight perspiration), but once evening comes, I start pouring sweat when it's actually getting cooler out. Same thing happens in the tub. When the water is hot, I don't sweat. Once it starts cooling to lukewarm, I start dripping. Thunderstorms trigger the sweats in me, too, for some reason - especially ones that are off in the distance and never arrive. Jaw symptoms always seem to increase along with the sweats.
Now there are days when I sweat earlier in the daytime, too - when it's hot and humid and makes more sense to be sweating. But should I be sweating so much that my glasses are getting cloudy and gritty and the front of my shirt is dark and wet? My armpits, my chest, my neck, my head...mostly my upper body sweats. My lower body isn't too bad.
I can't afford Mepron, so ? I did take Malarone and Larium for a while. How many months do you need to be on antibiotics to cure babesia?
I have tried hydrogen peroxide when this happens. What happens when I do this is my mouth starts to fizz and bubble like crazy, which should be good. But for some reason my gums get much WORSE after doing this? The thick greyish-white coating on my tongue gets thicker yet.
Listerine or Viadent seem to be more tolerable, though I even think using these makes the gum/tongue issue worse,just not as quickly as with the hydrogen peroxide. In fact, I tried uing a 'natural' tea tree/neem oil toothpaste, and this seems to make my gums bleed just as badly as when I use hydrogen peroxide. The only thing that seems to help at all is a mixture of sea salt and baking soda. It doesn't cure the bleeding gums and white tongue, but at least it doesn't cause any worse of a 'reaction' in my mouth.
One thing I have been eating that sometimes helps my symptoms is Living Harvest Hemp Seed Protein Powder. I noticed that one serving (two scoops) contains 52% of the daily value of magnesium. It is also high in Omega 3's. I also take hemp seed oil.
As for Klonopin, it wasn't my idea to come off of it. I was basically backed into the corner a few years ago and told that if I wanted Klonopin, I had to 'remain active in counseling'. Since I was never required to be in counseling to obtain this medication before, and since I knew these symptoms were not in my head, I refused the counseling. I got a letter from the doctor warning me it would be dangerous to cold-turkey a long-term benzo like that, but there was no way I was going to be blackmailed into counseling when I was suffering from infections.
Cold-turkeying it was hell - my Lyme definitely got worse. But it feels so good not having doctors blackmailing me for a medication they got me dependent on, and it feels so good not having to be treated like a drug addict, instead of a drug dependent. I haven't slept 8 hours straight in years, lost gum tissue, my hair fell out, but at least I have my dignity.
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