Sunday, July 26, 2009

Research up date

The pharmacy and therapeutics committee requested more documented safety data on the nutrition and vitamins I proposed in the study protocol. As a result the study was not approved. I have continued to meet with the pharmacists to review the published literature which is what inspired me to design the nutritional approach which I have taken. These meetings and requests for more information to prove the safety of what I propose in the pilot take time, and patience and a lot of cajoling. As a result I am back to not knowing when the study will be approved, nor do I know how many people we'll be able to enroll in a pilot when it is approved.

In the interim we are getting close to having the original case report accepted for publication. Because we chose to put it into a journal that has open access when it is published I will be able to put a link to the article on this web site so that it can be accessed more readily. Although the pilot study is not approved, the research survey studies about the nutrition and the use of electrical therapy are ongoing. We have 42 responses in the nutritional study and 22 responses in the electrical stimulation study. While I can't talk about the data from those studies in any kind of detail I will comment on what people have reported about the presence of adverse event or complications from nutrition / e stim.

No significant adverse problems associated with the nutrition were reported. For the estim a couple of individuals have reported skin burns and discomfort as problems. One person reported their MS worsened and they discontinued the estim. Although this is not enough to prove safety or efficacy, I consider this good news.

The other thing that is happening is that my physical therapist is writing up a case series reporting on his first 9 patients that he's treated with electrical stimulation. Unfortunately doing a scientific article usually takes several months to a year to go from start to being in print. Science is like that, painfully, arduously slow. I find it maddening too, but that is the nature of the beast.

Like everyone else in the world the recession is affecting the academic world too. We are also being asked to do more for less. That means that we are all picking up more clinic time and have less time to work on unfunded research. The consequence to that is that my partners who are doing this research are also being asked to do more. We have less time to devote to trying find the answers to the questions raised by the pharmacists. So we work at it. That means I choose between putting some time on the blog, or time on getting the pilot going. I've been prioritizing getting the pilot study approved. Of the two, I think that is the more important task. Getting a pilot study so we have preliminary data and can submit a grant for a larger study -- which could then be recognized by the medical community has the greatest impact for everyone.

For those of you who are dismayed that I'm not blogging more frequently I apologize. I also apologize for creating the hope that I'd have a pilot study open in the near future. I do not know when or if it will ever be approved.

That is not in my control, although I do tell myself it can't be harder than getting out of the wheelchair (some days I wonder however!). In the interim I'm working, seeing patients, teaching a couple times each month, working with my team on trying to get a pilot protocol through the review process so it can be approved.

Re my absence from posting / face book

Two things happened - one was that my personal ilfe became hectic as my son finished high school. Then my digital passwords for my face book and other internet accounts were compromised. Those problems have me locked out of my email accounts, facebook and my financial institutions and more which is why I have not been posting to anything. I couldn't access most of my digital word - and still cannot. At this point my priority is resolving the havoc it's created. If I have to rebuild all of the digital content that will take many months - and I am much more interested in trying to move the pilot study forward and doing the classes to which I've already committed this summer and fall.

I apologize to those of you who were wondering what happened to me.

Iodine and MS

July 26, 2009

Over 70 percent of Americans do not take in a sufficient amount of iodine in their diet to meet the daily recommended dietary allowance for Iodine. This is because the North American soils are Iodine depleted and we physicians have advised our patients to not use table salt. Since most of us were getting our daily Iodine through the use of Iodized table salt instead of consuming sea weed, the majority of Americans now consume less than 1/3 of the recommended daily intake for Iodine.

That is important for those who suffer from MS because Iodine is an important nutrient for making myelin. It is also an important nutrient for removing toxins.
The best food sources for iodine include sea weed (especially kelp), iodized sea salt, sea salt and iodized salt. Also because kale and other cruciferous (cabbage family) vegetables compete with iodine receptors - those of us who eat a lot of cabbage family vegetables need to eat more iodine than those who do not. I can't find a specific dietary recommendation on how much much iodine we need however. My personal approach has been to add a teaspoon of powdered kelp to my kale salads.

Ideally to determine whether or not one has iodine deficiency would be to work with a physician who is expert in Iodine. More information about iodine can be found at