This ones gonna be a stinking huge post. Just a warning for those embarking.
This months meeting was a special one. First off we had a guest speaker: Dr. Rudolph from the Clinical Research and Osteoporosis Center. We followed his presentation up with quite a range of topics; clinical trials, cortisol levels, drug treatments, chiropractic and massage options, even your responsibilities for driving with prescription medications.
I will do my best to briefly (cough) recap our meeting.
Our guest speaker:
Dr. Rudolph came to our group to present a clinical trial his group is conducting on an investigatory drug used to treat pain associated with Fibromyalgia. From my understanding it is a chemical compound closely related to Lyrica. Here is some more information:
www.aldaystudy.com
Email: recruitment@nmbonecare.com
www.nmbonecare.com or call 505.923.3232
Dr. Rudolph has been investigating and treating fibromyalgia for over 20 years, he talked about taking care of this disease from a physicians point of view. He believes it is important to listen to each patient and to treat each patient individually, that each case of fibromyalgia is vastly different than the next. He explained that they were seeing many patients complaining of widespread pain, fatigue and other systematic problems that didn't have the traditional trigger points and so the criteria for diagnosing fm has changed. As a physician it is difficult to treat fm because the disease encompasses so many organ systems in the body and there is no well defined therapy, your physician has to be able to listen to you and then decide what things he can treat or investigate and what others he cannot. He believes that a big part of treatment is listening, acknowledging and understanding his patients complaints.
He discussed some of the drugs that approved for treatment of Fibromyalgia but that none of the current drugs are very effective and and are infidelity not the cure.
LDN:
We went on to discuss LDN (low dose Naltrexone) which he had no real knowledge of, if you are interested in learning more about LDN visit the resources page, there is a section dedicated to LDN information.
Blood Tests:
We discussed the viability of blood tests. There is NO blood test for FM. There are some sites out there to claim this is so, they do indicate certain markers for things like inflammation and cytokines, I'm not clear on the specifics but it does not prove or disprove fibromyalgia. It cannot be used to help you and has no clinical value for FM support. ( I personally researched this and believe it to be false advertising, I will try to locate that info for further discussions). It is still very important to have blood work done to rule out the possibility of auto-immune disorders or other diseases and complications. There is a high incidence of other diseases and auto-immune in Fibromyalgia, this may mean your fibromyalgia is secondary (because of another disease) and may be better helped by addressing the primary condition. Dr. Rudolph says: patients who have Fibro are entitled to have other diseases. Not everything is from fibromyalgia, be suspicious.
Tanezumab:
I brought up a drug that was used in clinical trials a while ago that failed its last stage and wasn't approved by the FDA. The name of this drug is Tanezumab (anti-nerve growth antibody) I haven't done much research on this drug because I was only just made aware of it, I will do some follow up soon. The presentation given to me on this is that it is not yet available in the US but that the trial is starting up again for rheumatological problems. The physician that I talked to said that it was amazing in clinical trials for pain but that people with degenerative arthritis were having such good results that they got too ambitions and started participating in high impact activities and that these patients started showing excessive signs of wear and tear. This is from one perspective, I'm not pitching a drug and it's unlikely to be available to us for some time even if it does get approved. It would likely be off label for pain and not specifically for fm. It's still nice to know about these things.
http://www.medpagetoday.com/Rheumatology/Arthritis/44822
Treatment Protocol:
Dr. Rudolph's approach to treatment is this: try and treat depression, anxiety, try not to impair cognition because it might already be a problem, start with generic drugs in the same class and if they don't work move on and get prior authorizations and move through the drugs available. The disease can be disabling, incredibly hard to treat and very painful, he has patients on opioids and analgesics but believes that is the wrong approach. Because this is a life long illness, he believes if you can stay off them you should, it should be the last option. Keeping dosages at stable amounts is very complicated. He advocates for water therapy (warm water) and other alternative therapies, trigger points, acupuncture, massage, chiropractic ect...
I see a massage therapist at lifetime chiropractic, her name is Jen Shimilimo, I heart her.
Atlas Orthogonal Chiropractic Care:
I have discussed this in other meetings but let me tell you a little about it, this is not your normal crack and pop chiropractor it's completely different than any other chiro experience I have ever had and it is completely painless in fact you may be wondering how the heck does that do anything?! But it does. Amazing wonderful things. Here is a fantastic video of why/how the atlas machine works:
https://m.youtube.com/watch?v=O9wziwsu6QQ
Dr. Russo is the only atlas doctor I am aware of in Albuquerque:
http://www.mytime.com/deals/NM/Albuquerque/Medical-&-Dental/Chiropractic-Treatment/Atlas-Orthogonal-Chiropractic-of-Albuquerque/mt-kNTWJnSZWrEJbZC-uQF9qg
The wrap up for Dr. Rudolph:
He agrees that there is currently no truly effective treatments for fibromyalgia, slowly they are learning more and more effective treatment protocols but it is best to try many options and see what works for you. He is currently asking for people who might be interested in his new drug trial.
http://nmbonecare.com
We discussed a few more things this meeting... I know that's already a ton!
Cortisol Levels:
One of our new members had a lot of helpful information he provided me with several interesting links:
low cortisol levels:
http://www.ncbi.nlm.nih.gov/pubmed/20458566
http://www.biomedcentral.com/1756-0500/1/134
both high and low:
http://www.weightloss-dietfree.com/cortisol-and-fibromyalgia.html
MTHFR gene polymorphism:
Another was the MTHFR gene polymorphism. He explains it's actually fairly common in the US Hispanic community, with > 40% having some variant of the mutation (polymorphism). The methylation process is extremely important, and it explains a lot about his particular issues. He has the homozygous (inherited from both parents) version.
If you have 23andme (genetic lab) data (only $100), you can upload the raw data into the methylation analysis of the site geneticgenie.org.
http://www.drhagmeyer.com/fatigue/mthfr-and-adrenal-fatigue-syndrome/
http://thefibrodoctor.com/fibromyalgia-chronic-fatigue-syndrome-methylation-cycle-block/
both him and another member discussed a lab test by Genova diagnostics and functional medicine treatments both felt they made a lot of progress with their treatment protocols because of these tests and would recommend everyone doing these for themselves.
If you would like to talk to Carmen Wagner-Mogle, MD on the Functional Medicine, her contact information is (505) 500-5439 or Carmen.SolanoMD@gmail.com
Other Randomness:
we discussed things like Aspartame (where I proceeded to charge the lasers and zap anyone in my vicinity with shock and outrage) sorry bout that ya'll I try to remain objective but as some of you pointed out I do have a few "hot-buttons," I won't rant about that now but maybe I'll do a post on it at a later date. Same goes with driving with your medications and your rights when you encounter the law. Another day, that might be a touchy topic for some and one I'm not truly all the qualified to tackle. That probably won't stop me but for now we will hold.
Left Turns at Albuquerque anyone?
That's All Folks, hope it was enjoyable and informational and we'll see you next month!