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DRAFT TODAY, POST TOMORROW: Some posts may be in draft status until I (aka procrastinator extraordinaire) get around to posting them.



Thursday, June 23, 2011

Are we healthy yet?

***In Frankfurt, researchers send a clear message to neurologists:  in view of the impressive improvements treated patients have experienced, we consider it unethical to withhold this treatment from those patients who are aware of and willing to accept its experimental nature.  CCSVI treatments for MS patients are showing improvement in general and sensory symptoms.  Fatigue does not seem to be affected.  Most cases had no complications.

***My friend sent a link to an interview with Dr. Terry Wahls, a woman with MS who believes the solution to our chronic diseases is in the biology of life--through diet rather than medicine.  It is lengthy but I finally listened to it. Her story is one of disabling and progressing MS, turned around through a diet of essentially 9 servings of vegetables daily.  She has a book, Minding the Mitochondria, with recipes.  She has her students practice the diet for 2 weeks and they love it.  She recommends trying at least a dairy and gluten-free diet for 2 weeks, then have a gluten meal.  For the ambitious, the diet has no grains or legumes.  It is essentially a Paleo diet.

***I was contacted because I commented in a LinkedIn group that I try to avoid artificial sweeteners but I include xylitol (not considered artificial) because I don't feel it is "real" and the side effects (see xylitol and dogs) are undesirable.  The person who contacted me was from France, and he felt I was being unfair to xylitol--but he said he had a conflict of interest.  After explaining that I have MS and am still making decisions about what is right for me, he responded that his brother has MS and also avoids xylitol!  He says his brother follows a "hypotoxic diet as defined by Dr. Seignalet."  Most of the information online is in French; however, since it is so close to the Paleo diet, I found that foods allowed include raw or moderately cooked meats and eggs as well as soy and alcoholic beverages.  Forbidden foods include most grains and cereals, dairy, chocolate, and beer.  The summary: it's a paleo diet including raw meat.  I don't eat raw meat or eggs due to my drug trial.  I don't think this will work for me.

***I think that this study says that vegetarian diets contain higher levels of soy.  These higher levels of soy, even a few weeks of supplementation, improves cardiac function but increases incidents of hypothyroidism.  So, let's see if I got this right--I should give up dairy, but I also can't have soy.  WTH.

***Big Pharma does some good research--I guess.  I know they are trying to make a profit but some of their tactics seem underhanded.  It's a long article, so I admit I only skimmed it.  Just enough to piss me off.  Done.

***I obviously spend too much time online reading about anything and everything MS related.  I just found out that I am an e-patient!  (Watch e-patient Dave; it's totally worth your time if you have been or ever will be a patient!)  Also, while I don't agree with Montel all the time, I completely agree that patients need to be taken off the battlefield.  To me, these two videos are about REAL health care reform: giving patients their medical files, giving patients the resources and raw data to make informed decisions, allowing patients to have options and make decisions about their care, and reducing the stranglehold that politics and profits have on our treatment options.

***MS drug prices increase.  And increase.  And increase.  I remember looking at Avonex prices when I wasn't sure how or if my company's insurance would cover it.  I ended up on my husband's insurance (although my company would have paid for my insurance coverage) because I could not find out if Avonex was a drug that would not be covered but count towards my (high-) deductible or if it was not covered AND did not count towards my deductible.  The latter option would have meant paying $10,000-12,000 for a year's supply, and still having medical costs that I had to pay out of pocket.  Wow.  Yeah, I stayed on his insurance.  Later, I changed medication--Rebif wasn't covered on my insurance but Betaseron was.  Um, okay, they are practically the same thing.  Then I went into the drug trial so I moved to my company insurance (about the time that my husband's company started charging too much for my coverage for it to make sense anymore.)  So, long story long: the cost of Avonex has increased to almost $40,000 a year.  And that's middle of the pack for MS drugs.  WTF.

***Researchers are looking for ways to repair myelin damage in MS patients.  "Myelin repair holds real potential to prevent or even reverse the devastating effects of MS."  While activating stem cells sounds like a fantastic idea (maybe, I have no idea if it's fantastic or not!), I have two issues with this.  First, I'm starting to be very skeptical about the "laboratory model of MS" because the lab rats are being subjected to this process to get an MS-like result but it's NOT MS.  The second issue is this: "We are excited to see this work moving towards clinical trials and are hopeful that this will lead to a new form of treatment for people with MS within the next 10-15 years."  Do you know what kind of progression someone with MS may or may not see in that time?  I know I'm impatient, but I know that I am not doing as well TODAY, NOW, THIS WEEK, THIS MONTH, or THIS YEAR, as I was doing when I was diagnosed.  So excuse me if I don't get all giddy about your awesometastic research that you are going to do for the next 15 years while I fall the fuck apart.

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