I cherish my kids' youth, my sleep, and my 20 minutes of television before I fall asleep each night. :-)
Saturday, April 16, 2016
20+ Years of Multiple Sclerosis, Part III
At this point, I was out of the clutches of western medicine and on my own. I was fortunate at the time to still have a good job. I was able to pay for some alternative treatments for while. I was hobbling around a local heath food/supplement store one day, and had a conversation with a guy who worked there. I had learned a long time ago, before I knew about MS, that my body was super sensitive to certain things that I ate. Years earlier, I'd gone off wheat, just to see what it would be like. I felt much better. But I didn't know why, and I didn't have the discipline at the time to do it 'religiously', if you will. And I didn't get at the time that it was the gluten part of the wheat that was the problem. And gluten is all over the place.
The guy at the store for some reason (thank you, universe) mentioned to me that he had a friend who also had MS, and she was a nutritionist. So I went to see her. She was the first one to tell me about Molecular Mimicry. Here's some information about it: http://www.direct-ms.org/molecularmimicry.html
It is essentially suggesting that the protein molecule in gluten is very similar to the protein molecular in myelin. The theory being, in my civilian language, that the immune system gets all riled up by the presence of the gluten protein. With MS, you don't want that. While it's attacking the gluten protein it attacks the myelin. The protein molecules leak out of the GI system into the blood stream. I had been on top of 'leaky gut' syndrome for several years, so it all made some sense to me. I don't think there are enough studies to please some western dr.'s. I get that. But I am type who likes to do my own research, and try things out. I decided to try seriously going off of gluten for several months, and then returning to it for two weeks to see what happened.
Oh my gosh! My then chronic-fatigue improved immensely. When I did the gluten re-entry, I'd wake in the morning with huge bags and circles under my eyes, like I was 40 years older. I had mysterious rashes. I felt awful. I felt so bad that I quit gluten after 4 days. I did a few blood tests during the 4 days that came back showing the anti-gliadin immune system stuff was racing around in my bloodstream. I considered that proof, as if the symptoms weren't enough. It took a few weeks for the 4 days of gluten to clear out of my system. I've been completely off gluten every since and don't mess around with it at all. My 17 year old son, who also has auto-immune issues, once famously said "gluten is for suckers!!". He's been off gluten for about 5 years, at the recommendation of my alternative wellness doc. Of course, it works well for me, and it works well for him. I'm not saying "I think everybody with MS needs to go off of gluten!" I do think that dietary changes *can* make a big difference for some of us, and the best way to found out is to experiment with it. What works for me won't necessarily work for you, etc.
I will say that I think the neurology community is too stove-pipey. By that I mean, they aren't that great yet at treating all the body systems as a whole. The idea that the GI track, intestinal flora, etc. would impact MS doesn't sit well with many of them. According to me, of course it does. Of course it does. The body is a comprehensive system and various systems do relate to each other. Other forms of medicine, such as Ayurveda and Chinese medicine have practiced that way for what I believe is thousands of years.
Which led me to one of the best things I ever did. I was fortunate enough find a woman who had been a mainstream neurologist for many years, and then got herself trained in naturopathy and herbal medicine, etc. She seemed to have dropped out of heaven or something. She referred to herself as a holistic neurologist. She was right up my alley. I saw her for many years. It was around this time that I tried low-dose Naltrexone (LDN). One of the mainstream neurologists laughed me out of his office when I'd mentioned it to him. Andrea was completely willing to have me try it out.
My experience with LDN was mixed. I found that it improved my energy greatly - in the beginning, it felt like a miracle. But I wasn't able to sleep. I tried a lot of sleep meds, etc, to counteract it but it wasn't working for me. It did not really alleviate anything else for me but the fatigue - but that was awesome while it lasted. It definitely did not have any impact on my continuing progression or relapses. I finally gave up on it because having MS and not getting enough sleep does not work out :-)
My cognitive issues continued to progress, however. I didn't have the 'fog' anymore after ditching the gluten, but my executive function was a nightmare. I was fumbling things at work and at home. I could not play the keyboards (I was in a band) like I used to. The brain-finger connection was getting worse. I would type words I didn't mean to type when writing work emails. I learned to proofread, proofread, and proofread again. I noticed that unintended words also came out of my mouth. It felt like some alien thing had taken over my mind and I couldn't manage what I said properly. Did Not Like.
While I think there were benefits I felt from 'all of the above', none of it stopped my progression. My feeling is that stopping the progression is the single most important thing to do. And these days, we are so lucky to have medication choices that can possibly do that. It wasn't the case years ago. Once the progression is stopped, then lots of thing can help with the symptom management, energy management, etc. That particular type of chiropractic procedure was so freakin' violent that I was literally traumatized by the whole thing. I was not going back to it again. Did it help me? I'll never know for sure. It didn't stop my progression, though.
At this point, I was pretty committed to my nutritional plan, and to some supplements (Dhea, thyroid and adrenal support at the time.) However, my gut told me I needed to go back to the western neurologists and see what was new. I wanted to stop my progression.
I made an appointment with another 'celebrity neurologist' in town (Denver) named Alan Bowling. Dr. Bowling is pretty hip to the alt treatments. But I wanted to try a betaseron family med. I hadn't done that yet, as I had a history of depression and Dr. Corboy was opposed to it. Dr. Bowling was fine with me trying it. So I did. I made several attempts to make it work for me. What I can tell you is, I became as suicidal as I'd ever, ever been on that drug. It was truly a nightmare. I stopped it. I parted ways with Dr. Bowling, and did appreciate that he'd let me find out. At the time, I thought Corboy's clinic was on the cutting edge a little more than Bowling's was. They eventually combined forces.
I waited a long time for another appointment with John Corboy. Kind of tail between my legs, when he came into the exam room, I said "hey Dr. Corboy, I'm back. You were right!" Told him about the Rebif and the other things I'd been doing. He mostly rolled his eyes at the nutritional stuff, but I didn't need him for that anyway. This was around 2004, and Tysabri had come out. He very much wanted me to try it.....