Treatment confusion

Tell us what you are using to treat your MS-- and how you are doing.

Treatment confusion

Postby ariehs » Fri Nov 27, 2009 8:26 am

I was finally diagnosed with MS in June, after ignoring minor symptoms for years, and then months of doctors and neurologists dithering.

Being the research freak I am, and having some family members help out, I quickly found Dr Slavin's stem cell program and signed up. I was living in Israel at the time, and he is at the top of the lists of Drs to work with for stem cell therapy, so that much of the decision was easy.

I also soon started on a 3.0 mg daily dose of Naltrexone (LDN) and have since been upped to 4.5 mg daily. I am not sure it is helping at all, though, even at the higher dose. I am feeling less downtrodden, so maybe that's the effects of the endorphin modification, but other symptoms haven't changed.

Because of circumstances outside of their control, Slavin's team wasn't able to get me a spot in the hospital for treatment for longer than usual. The extraction was quick and absolutely painless, at least.

While waiting for a spot in the hospital, I learned of alemtuzumab (CamPath 1H). I've been speaking with a doctor in the US who can and will prescribe it off-label.

While waiting for progress on that front, I learned of Zamboni's research in Italy and it's growing following in North America. I quickly found a place to be scanned in my home city, and I am discussing the subject with a vascular surgeon who is considering starting an MS study - scans and treatment.

Now, finally, Dr Slavin's team has a spot for me.
I have been seeing several doctors in Canada and in the US, but I haven't decided on anyone as my primary physician.

I could use advice on how to proceed. What should I pursue first? The CCSVI treatment seems to have the fewest risks, but how long should I wait, or delay other treatments, while working out a way to get treated for that, if the scans show that it's even called for? (I am going to be scanned early next week).

I am beginning to distrust my own judgement a bit, as I find I am more and more judging these things emotionally, and less based on available data.
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Postby tzootsi » Fri Nov 27, 2009 1:06 pm

This is a tough one to answer, I'll give you advice based upon my research. First, keep up the LDN - it usually will at least stop progression. Some people do better on 4.5, some on 3.0, but NEVER go above 4.5. Next, get a copy of the MS Recovery Diet, a very informative and positive book on diet changes to help MS. The book was writte about 2 years ago, so CCSVI isn't mentioned, but the recommendations given can be very helpful. The DIRECT-MS website is another diet resource, as is the Swank Diet.
My wife is doing LDN & diet and doing quite well. As far as stem cell vs CCSVI, I think they both have value, but (IMHO) I feel that CCSVI has more promise at this point. The way I see it, first fix the physical problem with the CCSVI procedure while doing LDN & diet, wait a while, then if you feel you need more, then look into stem cell. The MSWORLD forum has a fair amount of people posting their experiences with stem cell procedures - some are good, some aren't.
Please realize I'm not a medical person, just someone who's done a fair amount of homework to help my wife.
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Postby ariehs » Fri Nov 27, 2009 1:47 pm

Tzootsi, thanks for your help. In regards to the MS Recovery Diet, I've been following that for several months, but I have very little confidence in it. I don't have much of a hard time with it, as I love to cook for myself anyway, but the only food related reactions I've noticed are to whole eggs and white bread. I'm not confident about those, either. I just *maybe* see a pattern, so to be extra safe I am following the diet for now.

I agree with you about trying the CCSVI procedure first, but my worry is that I have been offered a spot for the Cell Therapy, and this is after months of (abnormal) waiting time. To pursue the CCSVI treatment, I would have to delay the Cell Therapy, or pursue it afterwards. Do I loose the bird in the hand for the one in the bush?
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Postby zinamaria » Sat Dec 05, 2009 8:42 am

Just jumped on here and would like to recommend a book 'Healing MS, Ann Boroch..it is my experience, after over 9yrs with MS that changing my diet has helped me immensely, especially a gluten free, SUGAR free diet. and low fat diet, keeping away from the saturated fats...I eat berries and use only stevia for sweetening, which really helped me conquer the sugar cravings, but giving up sugar is not easy and most of us do not realize our dependence on it...just try going without anything sweet for a day or a few days, including fruit, and you'll key in to this. Also the Body Ecology Diet by Donna Gates is an excellent resource for a healthy balanced diet.
Our bodies want health! Let's give them a chance by doing everything we can to keep the internal system strong.
And yoga, or a daily practice of meditation and, or deep breathing excersises really help the mind and body.
Peace and joy to all who are suffering, you are not alone,
Zinamaria
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Postby ariehs » Sat Dec 05, 2009 10:12 pm

Actually, I was already sugar free before my diagnosis. It was no hardship, I just found that I ate nothing with sugar in it, except very rare indulgences. The only regular exception was honey.

I've been following the MS Recovery Diet, though I read about several MS diets. I am a skeptic, though, and while I am convinced that diet has an effect on the course of MS, I get a sort of violent twitch every time I read or hear anyone suggesting that diet can cure or even largely effect something like this.

Diet is not nothing. Diet is not everything. It's taken a lot to convince me that diet is at all relevant, but I do acknowledge that it is. When you try to tell people that it is more than what it is, though, you ruin both your own credibility, and that of the idea you are promoting.
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Postby jimmylegs » Wed Dec 09, 2009 1:16 pm

today is the first time i have had a glance at the MS Recovery Diet.
i agree with you ariehs that diet is not everything.
i have some problems with the usual dietary approaches, but only with parts. such as the food sensitivity/allergy aspect. i would want to know if a nutrient imbalance was causing sensitivities, not just avoid things because they cause a reaction.
i think the big thing that appears to be missing is the bloodwork. if something is working or not working, how do you know if it's the diet or not without testing?
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Postby ariehs » Wed Dec 09, 2009 3:13 pm

Just to update this:

I am headed to Greece in a few days to go forward with with Stem Cell Therapy, with people from the CTCI (Dr. Shimon Slavin).

My neurologist very reasonably pointed out that the next two or three months should reveal a lot of new information about the vascular aspects of MS, and the protocols for examining them should be better understood. He was skeptical these links exist at all, but acknowledged that he may be wrong, and again said a few months should reveal a lot more.

At the same time, LDNs seem to be doing nothing for me, and risking letting the MS progress untreated is just unacceptable. So stem cells it is, as I have a spot for next week, and then I can take my time looking into the whole CCSVI thing.

Yes, I am following the MS Recovery Diet. Yes, I started doing Yoga to regain my sense of balance and co-ordination. I will not believe either will fix anything, but both have been positive steps and I'm sure they will continue to be so.
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Postby tzootsi » Wed Dec 09, 2009 4:38 pm

Wow, that's exciting. From what I've read, the treatment in Israel has had the most success. Good luck and keep us posted!
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