posted
Just wondering if anyone else has pretty severe tmj-type pain. I have jaw, facial and ear pain, pressure, tightness. I also have bad pain in my neck.
My ears and jaw feel swollen and I really can't stand to put up with it anymore. I was told I probably have tmj by a dentist years ago.
I just found out I MAY have lyme.
My Igenex WB had 1 positive and 2 IND so not 100% sure if I have it. Am currently looking for a good LLMD.
I've had unexplainable pain and fatigue among other symptoms for 22 years and was diagnosed with fibromyalgia and was told not much I could do to treat it.
My worse symptom is pain in the areas I described above, plus legs and feet burn and ache terribly. I have pain almost everywhere in my body with face, neck and legs being the worse.
I just got off my narcotic I've been on for 10 years thanks to my family dr thinking I didn't really need it and so am feeling really miserable and useless. I really feel too bad to do anything and extremely fed up with it!
So....
Wondering if tmj pain is lyme-related or maybe a separate issue altogether.
Anyone else have a negative Igenex WB and still being treated for lyme?
Thanks for listening and for your help!
Posts: 4 | From Illinois | Registered: Aug 2016
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posted
Yes I have been dealing with this issue for several years now. I've come to believe that a lot of TMJ cases are probably due to chronic infections rather than a mechanical issue.
When I take antimicrobial substances I get a major increase in pain/pressure in the jaw/teeth/cheekbones. The sinuses are often involved too.
I think it can be a combination of Borrelia (Lyme) and other fungi and microbes that all take residence there. From what I gather protozoa (Babesia, Protomyxzoa, Toxoplasmosis) can often be the "foundation" pathogen in jaw issues.
The issue is that osteomyelitis (bone infection) is probably the hardest thing to completely eliminate. I'm otherwise pretty much recovered from Lyme after 4 years of treatment but haven't managed to completely clear the jaw yet.
Posts: 131 | From CO | Registered: Jul 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Please tell us what band was positive and what 2 bands were IND.
Also, people with severe fibro (but not mild fibro) generally actually have lyme disease. The lyme doc who cured me was one such person. He told me that once he found out that fibro is often lyme, he tested all of his fibro patients for lyme and found that 100% of them were positive for lyme. So, then he treated them for lyme and they all got rid of their fibro.
And yes, MANY people get negative Igenex WB and still get treated for lyme. The lyme specialist will consider whether you have been in an area that has ticks, the positive and IND bands you got, your medical history, your symptoms, and then decide to give you a trial course of antibiotics to see how you react.
Your reaction generally seals the diagnosis. See Burrascano Lyme Treatment Guidelines, page 7 where it says:
"Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy."
If you read that page, you will see that Dr. B says that none of the lyme tests are totally reliable, so that is why the final test is a trial course of antibiotics.
Especially for someone sick with lyme for 22 years, your body may have long ago stopped making the antibodies that the Western Blot is looking for.
You see, the Western Blot is NOT looking for lyme germs. It is looking to see if your body responded to the presence of lyme germs by making antibodies. That happens about 6 weeks after the tick bite, but it doesn't go on forever. Some folks stop responding to the lyme germs, so they get negative Western Blots.
But, often after some treatment, the immune system "wakes up" and starts responding to the lyme germs again. So, some lyme docs retest a patient after some treatment.
That really isn't necessary if you have a good response to treatment. Your response can be just gradually getting better or it can be a worsening of symptoms known as the herxheimer reaction.
If either of these reactions occurs, it means that you definitely have lyme disease.
The burning feet sound like bartonella which is a coinfection of lyme disease. See pages 24 and 26 to see if you have any other signs of bartonella.
You will see "sore soles" mentioned here, but often the feeling is of actual burning. I had that. I felt like the soles of my feet were burnt. I also had a friend who would be waked up during the night with horrendous burning feet. (B12 injections helped her with this.)
I also had a friend with long-standing fibro that had gotten disabling. I took her to my lyme doc who tested her for lyme. Her test was just like yours. But, her babesiosis test was positive. My doc treated her for lyme, babs, and bartonella. She had been sick about as long as you and was on Social Security Disability benefits.
She responded well to the treatment and is now back to the person I knew her to be years and years ago. She got all of her mental function back, which was great because lyme had made her "stupid" to such a degree that it was appalling.
I just want to warn you that not all lyme doctors have the courage to treat a person who does not have a positive lyme test. So, before you go to a lyme doc, find out from others if he is willing to give a trial course of antibiotics to a person whose lyme test is not a clear positive.
Do a lot of research into the doctor. Get input from as many lyme patients as you can. In my area, I know which lyme docs have the courage to treat without a positive lyme test, and I know the ones who won't.
You can try asking the lyme support groups in your state and surrounding areas in order to get such info on docs near you. See Support Groups on the left side of the page.
Regarding your TMJ pain, I will tell you that lyme gave me many different types of facial pain. It was one of my worst symptoms because it was so painful.
You will see Bells Palsy and dental pain on the list of lyme symptoms. See pages 9-10. Carefully review this list and mark all that you have. I also got trigeminal neuralgia which was like having one side of my face electrocuted.
So, I can easily believe that lyme could set off TMJ pain. You will see neck pain listed also. I had a sore neck and often a stiff neck.
Lyme is capable of giving a person hundreds of symptoms. So, before you try to get your TMJ treated, try some lyme treatment and see if it gets better.
You have to find a dentist who specializes in TMJ treatment if this is true TMJ. It is diagnosed by an MRI of the TMJ. Just know that you have to really look to find a TMJ specialist and they will be expensive. That is why I recommend you try lyme treatment first and see how much of your facial pain improves or even goes away.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Yes, TMJ was one of my early symptoms. At the time, I had a splint made to reposition my jaw and that worked to control the pain. I wore it at nite for years.
I had a chiropractor who used a hand-held instrument called an arthrostim to correct the jawbone/face bones misalignment. You can contact the Koren Specific Technique people to ask for practitioners in your area.
You might also benefit from a cranial session from a knowledgeable cranial sacral therapist. They are capable of relieving head pain if the skull bones are out of place.
I get it done every 6-12 months. It can provide major relief. It takes my facial pain down to zero.
Yes, your symptoms sound like Lyme. People can get negative test results even when they have it.
For neck pain, I have to see a good chiropractor. The relief is temporary, but necessary to function.
You can start to study what treatment is like in Medical Questions, in the sticky Important Information about Lyme and Co-infections.
Just know we're all different in what we respond to. Treatment occurs in three areas - kill/deter the organisms, detox, and fortify the body.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Have you tried taking anti-inflammatories like curcumin for the TMJ?
I would find an LLMD and get treated. If the TMJ is still there after treatment, I know a great dentist who can fix it for you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I also have TMJ. I see a dental specialist that made me a splint.
I was supposed to wear it all the time at first, now just at night.
I have periodic visits to adjust the splint based on my bite.
The doctor also gently manipulates my jaw area, neck, and base of skull.
The splint program has helped tremendously and is/was pretty cheap too from what I've seen online. So ask around your area for recommendations.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thanks for all your replies. My results on the Igenex WB were:
IGG: 41kda + and 23-25 IND
IGM: 41 kda IND
I'm not even sure if I should see an LLMD with what's considered a negative test, but I've heard how unreliable lyme tests can be.
I've heard that going to an LLMD that follows Dr Burrascano's guidelines is best but how do you find one??? Just by word of mouth?
If anyone can refer me to a good doc, I'd appreciate it! I'm in Illinois but willing to travel maybe.
Also, for my tmj pain I have tried a splint which helps slightly and I still wear. Also tried chiropractic on neck and it made my neck a lot worse (extremely dizzy and bad constant headache) for several weeks. So do not want to go back to chiro but appreciate the suggestions!!
Posts: 4 | From Illinois | Registered: Aug 2016
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posted
I occasionally have jaw/TMJ/facial pain. It isn't my main symptom, but it is one that makes the rounds.
My Igenex labs were VERY similar to yours. I had 1 positive and 2 IND.
My neck pain has been a big one for me. I tried Chiro also before I knew I had lyme. BAD idea. Made it worse. The dizzy and headaches are one of my main symptoms.
SO, although my Igenex test was not a positive. I definitely have lyme and co.'s.
I finally left my LLMD in the area and started traveling to the East to a Dr. that only treats lyme and chronic patients. I feel like I'm FINALLY making baby steps in the right direction.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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