New website for medical information

[Stanz]

This is a link to a new site that is being produced in my town, by my fellow film crew mates:

http://mditv.com/#/home

There isn't anything there that I've been able to find about MC as yet. There is a link on the home page for Facebook and I'm thinking that if enough of us were to write suggestions about the connection of dietary intolerances being a source of autoimmune disorders - maybe they will take this on. I can talk directly to my friends that are involved with this as well.

Andrew Holtz has come home to Portland after many years at CNN. It's an interesting site.

Connie

[angy]

Connie

i joined that facebook group and put a link up there to direct people to pp forum...

[Stanz]

Thanks Angy,

I wrote a long email to my friend who is part of this organization, haven't heard back from her but I know she is busy as their press releases went out this week and this is where she is involved. If you watched any of the videos of the film crew then you saw my good buddies that I've worked with for over 20 years. Mark, Bruce, et al are like my own family. I think this site has some promise, we'll see.

[rbks321]

Hi Connie-

I do believe I read one of your posts where you stated that you were (or have in the past) receiving prolotherapy.

I recently had a physical therapist mention it to me and have done some research on my own. I have suffered with TMJ for years. Been to a couple of the expensive specialists, tried accupuncture, and used meds with little or no relief.

I'm curious if this is true and if this procedure is helpful for you? I can't recall where you were getting injections. I know it is often given in a joint, which is why my PT thought it may be beneficial for me. The day she saw me for treatment and there was noticable swelling on the side of my face, we both agreed that PT was not helping and may have actually been making it worse.

Any information or advice on this subject would be greatly appreciated.

Thanks-
Rebecca

I see you are from the beautiful NW. I live in Vancouver, WA. Crazy weather we're having? I say "crazy", but it's actually pretty typical. Rain one day and then sunny the next. I love it here though!

[Stanz]

Rebecca,

Here is a link to my doctors website: http://myctm.org/ You can read about Prolo there. I am seeing Dr. Peterson. None of the other treatments I tried helped my joint issues. I refused to take methotrexate. I have been getting prolotherapy in both wrists for 2 years. It has been nothing short of miraculous. Best $ I ever spent.

You can't be more than a half hour away from his office (and my house!), I'm thinking. He is an expert on gluten issues as well, he got me off gluten 4 months before my dx w/mc. I love this guy.

Connie

[Stanz]

Rebecca,

After I sent you the above link to my ND, I went onto his site and see that he doesn't list TMJ treatment, a quick phone call would answer that question. Doing a quick google search using: prolotherapy, TMJ - I found a ton of stuff. I imagine you've already done this, but here's a few:

http://www.getprolo.com/prolotherapy_tmj.htm

http://www.prolotherapy.org/prolotherap ... y-modality

Good links here for information and videos on prolotherapy:
http://www.prolonews.com/tmj_pain_blog.htm

More video here:
http://www.prolotherapyinstitute.com/pr ... njections/

http://www.tmj-pain.com/prolotherapy.htm

So far this is the only negative thing I've seen that relates to prolo for TMJ:

This is a question about a 37 yr. old woman w/this problem (maybe your mom wrote this?) and if so, I'd just put in my 2 cents here, from years of frustrating research, that Mayo Clinic is pathetically behind the times on their research in pretty much every area, IMO. Most of their research is financed by the drug companies that make their $ off our pain. I take nothing Mayo says that is critical of alt.med. seriously. And especially in this case, as Prolo is being increasingly performed by MD's.
http://www.tmj.org/contact.asp

Question: My daughter's dentist is recommending prolotherapy to reduce bilateral TMJ pain and improve range of motion for her jaw opening (now at 37). She has been in various splints for 2 years, has had a Right ramus osteotomy, has had injections into the TMJ joints to dissolve scar tissue build-up and still experiences the initial pain and bilateral dislocation. Any info on prolotherapy in regards to TMJ would be helpful.
Answer: Prolotherapy (also known as sclerotherapy) is a technique in which an irritating solution is injected into a ligament or muscle tendon near a painful area with the intent of inducing the proliferation of new cells and thus strengthening these structures, supporting the weakened muscles, and eliminating the pain. Although it has been used mainly to treat chronic low back pain, it has also been recommended for patients with temporomandibular disorders (TMDs). However, there is no scientific evidence to show that weakened ligaments and tendons are the cause of pain in TMD patients, or to substantiate the effectiveness of this procedure in eliminating the pain. Moreover, there are no studies to show what these solutions actually do to the tissues. Therefore, prolotherapy should be avoided. Additional information can be found on Mayo Clinic's web site at http://www.mayoclinic.com/health/prolotherapy/AN01330 (Response by Dr. Daniel Laskin)

Connie

[tex]

Rebecca,

FYI, TMJ is a fairly common symptom of MC, for some of us. It was a major problem for me, before I adopted the GF diet, and my gut healed. Some days it was so bad that I couldn't open my mouth wide enough to eat normal solid food. On those days I ate soup, (with a teaspoon), because I couldn't get anything thicker than a teaspoon to pass between my teeth.

The problem completely went away, after I reached remission, and it has never returned. If you do a search of the archives here, you will find posts from many other members who have had the same experience.

If you are taking one of the bisphosphonate drugs, (to treat or prevent osteoporosis), please stop taking it immediately, and contact your doctor, because the bisphosphonates can cause the symptoms you describe. If a tooth or jaw infection should occur, while taking a bisphosphonate, the drug prevents the immune system from replacing the infected tissue with new growth, and the result is the progressive destruction of the jawbone.

The bisphosphonates are notorious for causing that extremely serious side effect. I'm not saying that this is your current problem, but it's certainly a possibility, if you are taking a bisphosphonate. If a bisphosphonate is not part of your program, though, then your TMJ issues should resolve, as your gut heals, if you are on the GF diet.

Tex

[rbks321]

Connie-

You are awesome. I don't know how anyone could say anything negative about this family. I appreciate the fact that you took the time to research this for me!

I'm interested in this procedure, but I'm concerned about the cost. I'm still struggling with out of pocket expenses for two ER visits and the hospital visit for the colonoscopy/endoscopy I had last year. I'm making payments, but it is definitely on my mind. Supposedly, I have "good" insurance. I can't imagine what my medical debt would look like if I didn't!

Unless they have internet in heaven, that email didn't come from my mom. It made me chuckle though. Picturing my mom typing away.... Thinking where there's a will, there's a way.

Tex- Thanks for the information. I know gluten is an evil thing for me. I have seen many improvements since I stopped eating it, but this TMJ is still an issue for me. I'm not taking any meds for osteoporosis, but I did take two ibuprofen yesterday. I know better, but when the options are narcotics or Motrin, sometimes I get frustrated and pop the OTC stuff to help with the pain. Boy was I sorry this morning!

I'm on my 8th week of Entocort. I can't reach my GI doc to see what his recommendation is as far as weaning off of it, and I can't recall what he said (or if he did) when I was at my appt. when he Rx'd this for me. I told my husband this morning that I think I am going to just do what I think is right for me. I'm pretty sure that he will give me a text book answer (whenever he gets around to returning my call).

Thanks again for the information. I truly do appreciate it.

-Rebecca

[Stanz]

I wasn't aware that TMJ was also something us MC-er's shared. It has not been an issue for me, but here's a link to what Tex is talking about: http://en.wikipedia.org/wiki/Bisphospho ... of_the_jaw

Here are some examples of prescription drugs that contain bisphosphonate:

Generic Name / Brand Name

alendronate/ Fosamax
etidronate (not approved by FDA for osteoporosis)/ Didronel
ibandronate/ Boniva
risedronate / Actonel
risedronate with calcium carbonate/ Actonel with Calcium
zoledronic acid/ Reclast

So, in all your vast knowledge, Tex, what do you know how MC interferes with and damages ligaments? I've just surmised that it is the constant inflammatory status that our bodies are in and that that inflammation causes bone and ligament damage. I wonder how many doctors are even aware of this when they prescribe osteoporosis meds?

Rebecca, if you do go to see Dr. P, be sure to bring in this information if it pertains to you. It does take some time being GF before the joint issues seem to resolve, however, in my case the damage was done and visible on MRI and no amount of not eating gluten was going to tighten the ligaments and repair the loss of cartilage and this may also be true of your jaw.

Always so much to learn.

Connie

[Stanz]

Rebecca,

Guess we were posting at the same time. Love this comment -

Picturing my mom typing away.... Thinking where there's a will, there's a way.

I wish I'd had that kind of Mom.

Just so you know, Dr. Peterson doesn't accept insurance. Some insurance companies will pay for it if you are referred by one of their preferred providers. I pay out of pocket because my insurance doesn't cover alt. med. He treats both wrists for the price of one and it costs me $264 per session. Most of my research seems to indicate you'd need 4-6 sessions, but several people said it was cured the first time.

To be honest, I've actually never tried to get this paid for by insurance by submitting my receipts. It is approved as a medical reimbursement account expense, however, so maybe I should give it a shot. I've met a stone wall with OHSU as far as getting my PCP to refer me for treatment or to recommend the L-Glutamine. I think they fear it would be a confession that they screwed up and didn't treat my wrist properly after I fell 5 years ago - which led to the cartilage/bone loss and is why they ultimately were recommending the trapeziectomy that led me to Dr. P. Maybe I've just reached full paranoia at this point. Most teaching hospitals are pretty well funded by drug companies. Perhaps I need a different MD./Clinic.

[tex]

So, in all your vast knowledge, Tex, what do you know how MC interferes with and damages ligaments?

Virtually nothing.

With Crohn's disease, and ulcerative colitis, for example, C-reactive protein is usually elevated, and it's a fairly reliable measure of the severity of the disease.

http://www.ncbi.nlm.nih.gov/pubmed/18566104

With MC, however, elevated C-reactive protein is typically not a factor, unless granulomatous inflammation is present. Of course, granulomaous inflammation is a marker of Crohn's or UC, or their early stages.

http://www.ncbi.nlm.nih.gov/pubmed/17878641

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2678590/

The type of arthritis that often accompanies MC is caused by the leaky gut syndrome, of course, and it occurs with a negative result on a Rheumatoid Factor, (RF) test. I had fairly severe arthritis while I was reacting, but my RF is negative, as expected. The problem is caused by incompletely-digested peptides being deposited in the joints, (and other organs), all over the body. Presumably, ligaments could be affected, by the same mechanism.

Tex

[Stanz]

The problem is caused by incompletely-digested peptides being deposited in the joints, (and other organs), all over the body. Presumably, ligaments could be affected, by the same mechanism.

Seems to me like you actually have answered and confirmed this here.

As the joints are damaged and cartilage is lost due to inflammation, the joint becomes looser, thus the ligaments are now too long to keep everything properly aligned. This is where Prolo helps. On the day of and day after I get injections, I can actually feel activity in the ligaments in my wrists.