Erik's Multiple Sclerosis & Lyme Blog

While the IDSA never had a significant impact over my treatment of Lyme I know their protocols do negatively impact a lot a people with Lyme. Many were optimistic that the legal battle with the IDSA would change things; I have never been that optimistic. (You can read about IDSA’s recent antics here.) You almost have to applaud their voting technique as almost malicious genius. In the minimum the amount of effort IDSA is willing to exert to maintain the status quo is excessive. Reviewing the new information and following the protocol has to be easier. With this development I am even less inclined to think any progress will be made with the IDSA Lyme protocol in the near term.

Reviewing an old post it reminded me of all the talk revolving around crazy at the IDSA hearing. There must be a little irony now that the IDSA seems to be forcefully rejecting new information for review.

Have we become a world where something is better than nothing? Are we really getting excited about the new oral treatments for Multiple Sclerosis (decent editorial overview ). Basically the same treatment repackaged in pill form. Except these drugs have worse side-effects. While Tysabri was never my cup of tea at least it was significantly more effective.

Since my address is posted on the blog I get a fair amount of unsolicited email from the MS drug companies. An interesting one came in on Tuesday that I thought bore comment. Serono has setup a new website
How I fight MS. The premise seems simple enough; five MS’ers telling of their struggle with MS via video, blog entries, and their personal story. There are many things about this site that left me uncomfortable and asking questions.

Other than being the white face of MS they took four existing female MS bloggers and then a “token” male (because there are males with MS too!). Why are the posts so short? These bloggers tend to write decently long pieces about various things. Did Serono mandate the length or did they cut it? Certainly a unifying theme too. Based on the content, that Serono is overseeing, it seems to build hope, confidence, and reassure. The content almost seems whitewashed.

When I saw the a couple of the videos my thought was that these were professionally made. My suspensions were confirmed. My other thought was that they are also getting paid, which was also confirmed by Julie’s statement “My Paid Blogging Gig (And, no, they don’t pay me to pimp their drugs)” and her reply in the comments. I applaud Julie’s optimism. Let’s do a quick marketing 101 course. Serono certainly wants to appear altruistic but they are in the business of selling drugs, and in the case of MS very expensive ones. If they get real MS’ers to speak on their site the MS’ers image and creditability get shared with Serono. That helps them sell expensive drugs. That is also why they are very interested in the content of the messages; probably mostly so the site will attract their target audience. Julie, you are getting paid to pimp their image which really is pimping their drugs.

For a low budget marketing endeavor I think Serono picked an excellent group of people that will help them significantly. Julie was optimistic and rejected Herrad’s comment that she lost integrity, though he later recanted. I agree that you compromise your integrity when you accept money especially from a drug company even if you were naive as to their true intentions. Money had to be the motivator, especially for the ones with blogs. They were already doing everything but video on their blog; if they wanted to do video that is something that could be done on their blog on their terms (and for minimal cost if they needed a webcam). I do wonder how much money they got for doing the bit, money that will cost you your integrity.

After all of that I will conclude by saying I too would be a shill if the right size bag of money came upon my door. Heck I could probably even be a shill for Mannatech, but that would have to be two very large bags of money.

In reviewing some of my old posts I came across this one where stormtroopers were raising money for MS. I had to go back and check their status to see if they are still participating in the walk; and yes the Dune Sea Garrison is still doing the MS Walk each year. Pretty cool, or maybe not for them. I still agree with mdmhvonpa’s comment about the heat. It is hot walking in Texas without heavy total body stormtrooper gear; I can not imagine doing it in Arizona. Now I have to wonder where Star Garrison was for my Texas MS walks. If Star Garrison had been here I definitely would have changed my allegiance to the Empire and probably thrown some Trekkies under the bus for good measure.

With a couple recent comments about the MP it had me thinking about that treatment option again. Certainly the recent comments were very optimistic as were some of my own old comments on the protocol. My thinking has changed over time and the Marshall Protocol now seems like a bad idea. As I recall the protocol is against D₂ and D₃. It does not seem rational to me that your body would make something harmful to itself, D₃, that would inhibit immune response. Even if 1,25-D could remain at an acceptable level with D₃ at zero, which seems unlikely, it still seems like a bad idea. Is it not hubris to call something non-essential if you do not know its full purpose?

On a somewhat related note I got the results from my annual physical and my vitamin D levels are low. The doctor prescribed 50,000 IU once a week to get the levels back up. I probably should be taking a daily vitamin D. I guess too bad I was not doing the Marshall Protocol since I was in the process of dropping my D levels all by myself.

This comment pointed out a new theory as to the cause and a treatment for MS. I do like that people are looking for a root cause rather than the very expensive treatments that are moderately affective for MS. That said his research has some problems to overcome

1. It is caused by high iron but MS strikes more females. Female tend to battle getting enough iron before menopause.
2. If he is relying on CCVI as an explanation why does this happen to women more than men
3. He is also failing to prove that iron is the cause it may be something else related to poor circulation
4. Or the circulation issue may be a caused by what is causing the MS

Not that Lyme is all MS cases but Lyme does cause demylination and it does affect circulation. Some other type of stealth pathogen seems more reasonable to me; especially after what Dr. Zamboni has found here with the circulation.

What I really dislike is the NMSS response. They consistently rebuff new directions of research and alternative therapies while continuing to push to core drugs. They are almost an advertising branch for some of their big contributors.

This Thanksgiving there was certainly much to give thanks for and certainly much to give thanks for when considering Lyme and MS. Here is a small subset of the things I am thankful for:

1. A family that loves me
2. I have gotten much better. Life changing better
3. Insurance that pays well
4. A decent LLMD
5. Medicine that has healed
6. A good job that covers all those wonderful medical costs
7. I got correctly diagnosed and started making massive positive progress
8. A great wife
9. A great family
10. A great life

Thank you Lord!

As I commented on another blog a while back I have been taking fish oil for a while. Early in transiting to my current LLMD I complained about my memory. He recommend fish oil; in particularly he recommended Cooper Complete Advanced Omega-3. My LLMD liked the higher concentration in Cooper brand, etc. He did warn that it would probably take two weeks to see improvement, which in hindsight seems about right. Taking the supplement has significantly helped my memory though certainly not a cure. Eriksgirl came around to the fish oil as well and she has seen improved memory as well. To be fair part of the blame is on our diet since we do not like fish and therefore naturally do not get the Omega-3 fats in our food. As a small consolation to not eating fish we should, hopefully, not be getting much mercury in our diet. Yeah fish oil.

For me in particular, and anyone who suffers from demyelination, I think taking fish oil is a cheap, easy way to greatly improve your quality of life.

So I got this comment on the blog so I had to go check out the site. I watched the video on the top of the site and it was about the necessity of people to volunteer for medical testing. I do not see the moral or ethical imperative of anyone to alpha-test or beta-test any drug or treatment. While he contends it is safe the point of the tests are partially to determine safety along with side effects and appropriate dosing. The bottom line is people have died from drug and therapy testing; which should be all too apparent in the MS world. I think I will pass. I do wonder if he has ever volunteered to be part of a medical testing process.

As I was flipping through my latest copy of MS Connection the headline “New Study Reports Reduced Overall Cancer Risk in Patients with MS.” Of course reading the article this only applies to “several” cancers and “particularly” women. Odd.

What I found most interesting is the higher incidence of brain cancer in people with MS. As the article states the cause is unknown but they note: “may relate to the increased surveillance and diagnostic workups such as MRI that people with MS are more likely to have compared to those without MS.” If the MRI can give you brain cancer so can your cell phone. Everone “knows” that cells phones don’t give brain tumors why entertain that MRI’s can. What I find most interesting is leaving the MS treatment drugs off as a very likely culprit for causing cancer. Since we know that suppressing the immune response to the brain prevents the necessary immune response to cancer cells suppressing it could cause cancer. I should note that this is not new news that MS drugs cause cancer as I dismissed a study in 2005.