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Old 11-08-2005, 08:09 AM   #1
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The Lyme factor

I've had TMJ issues for the last year, which arose from muscular tension, spasms, and led to a temporary dislocation of the jaw. Then the discs were out of place and I had restricted opening.

For months I have been focusing on treatments for TMJ: massage for really tight muscles, splint therapy, relaxation exercises, nutrition. They all helped, but recently I injured my knee and started wondering what the heck was going on with my body? Within one year I started having all kinds of problems, whereas before I was healthy.

My orthopedic surgeon recommended a lyme test and sure enough I had a positive result. It indicated long-term Lyme. I then went and looked up the symptoms and there was TMJ, as well as alot of other things I have been dealing with this last year.

Alot of internet research has showed me that Lyme is underdiagnosed and typically undertreated. The conventional perception on Lyme is that comes from a tick, and if there is no tick, there is no lyme. If there is Lyme, they treat it with antibiotics. If the antibiotics don't work, then it isn't Lyme.

Digging deeper, it became more obvious that Lyme is more than this. Is is a group of infections that can cause a whole range of symptoms. It can be treated, usually you need to get to a Lyme specialist. Then, as with TMJ, there is a huge range of these folks. Some are pro-antibiotics, some mix alternative with western medicine, and then some say antibiotics are not helpful and they use a different group of treatments.

If you go ahead and get yourself examined for Lyme, be prepared for resistance from your physician. Our country's medical system is still in the dark ages about these things.

I'm doing alot of reading on Lyme since being tested, and what I have found completely deconstructs the common perceptions we have about the infection. Two top microbiologists working with Lyme found that they could no longer find blood samples free of Lyme. They also found Lyme present in bodily fluids meaning it could spread without a tick or mosquito. In England, people who never go near the woods were diagnosed with it.

There are alot of possible symptoms, but they aren't the same in any two people. Neck stiffness/pain, muscle pain, TMJ, joint problems, back pain, nausea, fever, chills, tingling in extremities, headaches, brain fog, dizziness/fainting, confusion, difficulty in finding words, fatigue, irritability, confusion, depression, personality changes, disorientation, panic attacks, and more. As an immune system thing, it gets worse with stress, and also goes through cycles. I think from what I understand it is something like a 30- day cycle.

There is alot of info out there online. If you decide to research it, start with the lyme foundation, lyme.org and other reputable sites.

It might seem frightening to think that this is a possibility, but in my case, I was grateful to find out that my symptoms had an underlying cause.

Last edited by raylp; 11-08-2005 at 05:08 PM.

 
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Old 11-08-2005, 05:10 PM   #2
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Re: The Lyme factor

Good post. Lyme is something that people should be tested for who have on-going muscle problems. I've had my Son tested for Lyme, Mycoplasma, and a host of other bacteria/viruses that also have a hand in muscle disorders. Fibromyalgia and Chronic Fatigue Syndrome also go hand in hand with TMJD.

Again, good point to bring up. Those who have stubborn muscle problems should be tested for Lyme, as well as other possible culprits.

 
Old 11-08-2005, 05:17 PM   #3
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Re: The Lyme factor

May I ask what the results were? I've been learning alot about this lately and am curious. If it were a western blot test, the specific bands would be important. Doctors typically use this counting procedure in which you only have lyme disease if you have a certain number of bands, but I have read some info that contradicts this. These sources say if you have any Lyme specific bands, you have Lyme in your system.

Last edited by raylp; 11-08-2005 at 05:20 PM.

 
Old 11-08-2005, 05:24 PM   #4
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Re: The Lyme factor

His results on these two particular tests came back negative. Several other unrelated tests came back positive, though. I've researched this for quite some time and have found that most physicians prefer testing by method of PCR. Apparently, other testing methods are known to give false negatives.

What kind of meds do they have you taking for Lyme, if you don't mind my asking? And if you are on meds, have you experienced a Herxheimer reaction, as of yet?

 
Old 11-08-2005, 06:25 PM   #5
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Re: The Lyme factor

For the most accurate testing, check in the Bowen system. Their testing isn't based on the presence of antibodies, but instead they culture the bugs and look at them directly.

My primary physician did what most any HMO doc would do, and put me on doxycycline (100mg) 2x daily. I have felt a little fatigued, and have had some major night sweats, but that's about it. I'm not expecting much, because according to the literature I have been reading, these bugs are way too advanced for antibiotics, especially if the Lyme has been in the person's system for very long. They can duck and hide from these treatments.

I've been researching treatment protocols and am especially interested in the Samento herb. There are some significant studies on this wonderful herb and it's affect on the immune system. I want to get into a treatment protocol, preferably under a doctor's guidance. I'm also looking into the work of Dr. Klinghardt. He seems really advanced. Another thing that looks intriguing, but difficult to explain is immuneresponse training. AA Immune system clinic treats this. Wierd but seems like it works.

Last edited by raylp; 11-08-2005 at 07:09 PM.

 
Old 11-08-2005, 07:53 PM   #6
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Re: The Lyme factor

I don't recall reading of the "Bowen" system. Most of the professors that I've spoken to strictly rely on PCR versus looking for the presence of antibodies or a titre. (PCR: A technique for amplifying DNA sequences in vitro by separating the DNA into two strands and incubating it with oligonucleotide primers and DNA polymerase. It can amplify a specific sequence of DNA by as many as one billion times and is important in biotechnology, forensics, medicine, and genetic research.)

My Son is currently taking Doxycycline, as well. (100mgs. 2x day) From what I understand, Doxy seems to be the drug of choice for most of these bugs. I think that the treatment time (months, years, etc.) is what most people can't handle. Also, I don't think that it helps that these bugs can also invade the cell wall, thus making them hard to identify.

I'll have to check into the herb you described, as well as immuneresponse training. It sounds interesting. Have you ever read over the work of Professor Garth Nicholson? He's quite advanced, as well. Keep me updated on how you progress. I'd be interested in hearing.

 
Old 11-08-2005, 09:53 PM   #7
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Re: The Lyme factor

Very interesting topic! I am looking into being tested for Lyme's Disease this week. I have an autoimmune disorder. They think it is RA and Raynaud's, but I am not convinced as I have not been tested for lyme's disease yet. I appreciate you both sharing your information.

 
Old 11-09-2005, 01:33 AM   #8
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Re: The Lyme factor

Michelle,
Does the Raynauds have anything to do with your TMJ? I was diagnosed with Raynauds years ago and I've been suffering from muscular tmj for the past 2 1/2 years.
Sue

 
Old 11-09-2005, 11:19 AM   #9
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Re: The Lyme factor

There seems to be many disorders related to TMD, it's something - for instance I've had a years long problem w/estrogen/hormone levels from an early hysterectomy- googled the other day TMJ and hormones and sure enough a study linking estrogen deficiencies and TMD. and interesting the most common average age for TMD for women is 38 to 40, this about the time hormone levels start to alter for women - maybe this all has a common link.

 
Old 11-09-2005, 04:23 PM   #10
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Re: The Lyme factor

I just was informed that the 30 day cycle basically is a moon cycle, and that the symptoms would flare up during the time around the full moon.

I also read that "lymies" have seasonal flareups in the spring (apr-may) and in the fall (sept-oct)

I haven't come across that professor's work. I'm still learning. As far as PCR for testing, yes that's about as accurate as the standard tests go according to Lida Mattman, the microbiologist I have been reading. I'm going to send off for the Bowen results. And yes, I will let you know how things go. This actually is quite a rewarding journey- much better than focusing on a symptom. I feel like I am getting somewhere.

Last edited by raylp; 11-13-2005 at 03:58 AM.

 
Old 11-09-2005, 09:05 PM   #11
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Re: The Lyme factor

Susq, I am not sure if the Raynaud's has anything to do with the TMJD for sure or not. It seem in most of the reading I have done the past few years that most people that suffer from TMJD also have some sort of autoimmune disorder such as Chronic Fatiure Syndrome, RA, Raynuads, Hypothyroidism, Fibromyalgia, Lyme's Disease, Lupus or etc. I really think there is a connection that has yet to be made, but this is only something I have discussed with a couple of friends.

I see my new rheumatoidolgist tomorrow, so if I hear anything interesting after the visit or after my blood work I will let you know.

 
Old 11-10-2005, 08:22 AM   #12
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Re: The Lyme factor

I'm going to add resources here as I find them.

ILIADS International Lyme and Associated Diseases Society

There is a bullletin on this site from a Dr. Burrascano, who treats chronic Lyme patients, mainly with long-term antibiotics. While I don't know if the antibiotics work, he does include nutritional info for the disease, such as supplements to take for muscle-related issues. This may be of help to some of you out there.

Another alternative treatment option is using a rife machine. It sounds strange, but the theory is that each internal microorganism has a specific frequency, and if you play that frequency back to them strongly enough, they actually die. Hulda Clark did work with this as did Rife and others. There are many people who say this brought them back to pretty much normal from having serious problems.

Last edited by raylp; 11-11-2005 at 12:22 PM.

 
Old 11-10-2005, 11:25 AM   #13
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Re: The Lyme factor

raylp: Thanks for the heads up on nutritional information regarding muscles. I will look into this further. Keep me updated on how your treatment goes and what you learn along the way. I'm quite interested.

Michelle: I'd also be interested in hearing about your appt. and what the doctor thinks, as well as your bloodwork results.

 
Old 11-12-2005, 06:16 AM   #14
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Re: The Lyme factor

I've been reading about various alternative therapies for Lyme for about 7 days straight.

Many therapies are expensive, time consuming, and questionable.

I prayed two days ago for a therapy that would be effective, economical, and something that most people could do.

Since then two therapies have come onto my radar, and I wanted to post these separately. Both are unusual. Both have reports of people working their way through the healing process.

The first is the Rife machine. This can be researched on the web, and there is a book out there that has alot of info. A rife machine can cost between $300-5000, but that seems like it is alot less than the costs of most other alternative treatments. The treatments and transportation add up fast.
Lyme and rife [removed] groups is a good resource for this.

The second is the salt/vit c protocol. This sounds nuts at first, but look up lymephotos on the web, and check it out. Also lymestrategies [removed] groups.
This may be the most affordable treatment out there. The testimonials are compelling.

[Please do not write in search engines, which directs someone in a website search. Please read the board guidelines, by clicking the "Posting Rules" above for more details. Thanks - Well-come Moderator.]

Last edited by Well-come; 11-12-2005 at 06:26 PM.

 
Old 11-18-2005, 12:39 AM   #15
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Re: The Lyme factor

Cheryl,

I will let you know what I hear from the RA doctor. I am suppose to see him the week after Thanksgiving, but I don't know if I can hold out that long for my bloodwork results. I am thinking about calling tomorrow to see if they will tell me the results over the phone. I am sort of a nervous wreck worrying about it. It is almost 3:00 am, and I can't sleep.

They ran another Lupus test, a lyme test, and a new RA test that will tell you if you will develop it in your lifetime. It is suppose to be really accurate. They didn't see any sense in checking my RA factor again. It is always high. I will talk with you soon.

 
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