Mar 142005

At the end of the visit we discussed a number of treatments that he prescribes for patients who are in an exacerbation or who are otherwise struggling. On the list was IVIG which I asked for clarification of his use of that since there hasn’t been definitively shown to have clinical benefit in MS. He agreed, but there is a lack of data and it is conflicting, but said it was worth a try if nothing else was working. I also asked about LDN (low dose naltrexone) and said I had encountered some people who swear by it but are typically quite militant. He agreed with my concerns that the claim is that it bolsters the immune system, which is something that should be detrimental with Multiple Sclerosis and thus avoided. He said he did have one patient who was already on it when he saw her, and continued treatment for her, and she improved dramatically, though he wouldn’t say it was definitely due to the LDN. He went on to say that he has prescribed it for others at their request and typically he sees no benefit. He agreed also with what I’ve seen that there are quite a few militant LDN people out there; he had one who wanted him to publish the results of the one patient who did so much better while on LDN and nothing else. He said he may end up getting sucked into a LDN trial, though he prefers to just stick to clinical work, but does not want to be the LDN “messiah.” Probably a very valid concern from what little I have seen from this group, and God help him if he publishes something negative! 😉

 Posted by at 5:20 pm

  10 Responses to “My Trip to the MS Clinic (2/2)”

  1. Hmmm, LDN Militants … are they on the Terror Group List? Or was that LDS Militants … them Mormons can get pretty uppity!

  2. LDS militants are much worse. They’ll kill you and take your wife as their 4th wife! 😉

  3. I’m new to all this. I was just diagnosed (officially told)in January. Was disappointed at Tysabri’s setback because that was going to be my choice. I did not know there are other infusions available. Help, I’ve got my Doc setting up Betaseron. I have been amused (sorry) by your blogs for months now. Thank you, from Mouse.

  4. Hi. I’ve been researching Aspartame. It is the artificial sweetener in diet soda, and is also found in MANY other foods (pay special attention to foods marked “sugar-free”). Aspartame poisining mimicks MS. Watch the food labels, and stay away from Aspartame. Also do a little research for yourself on Aspartame poisining. Also, Glyconutrients are incredible products, I didn’t go looking for them, I believe God brought them to me. I thank him for allowing me to have an open mind, and give these products a try.

  5. Mouse,
    If I was getting diagnosed now I would probably have started Tysabri too. All of the other drugs are still good, though there is some evidence that Rebif might be slightly better – if you trust the drug companies’ studies! 😉 I’m surprised that your neuro didn’t let you choose, most I’ve met make a recommendation but the final choice is yours. Regardless Betaseron is still an OK choice. Good luck. Glad I am a little amusing! 😉

  6. Anonymous,
    You need a gold star for getting Aspartame and Glyconutrients into the same post. Of course now you’ve created more work for me as I get to pour through the logs to see if your IP matches as someone who is astroturfing. Thank goodness for grep! 😉

  7. Those who have benefitted from LDN were patients living a horrible existance for months, if not years, prior to finding out about it. After months of begging a doc for a script. And probably a lot of fear and thoughts of “OMG, WHAT am I doing?”.

    If someone has great results, especially when really unexpected, and fearing the worst, shouldn’t they share that?

    Most are asked to share their experiences.

    If they are jumping through hoops, shouldn’t they talk about it?

    They’re not militant, they’re ex-major-mondo-MS-sufferers.

    Maybe some day you’ll see for yourself. Not everyone gets great results, but a whole lot seem to be doing a lot better since starting than they were for a long time prior.

    Even One Day of perfection sans MS is well worth it, no? How about hundreds of them? No?

    Remember the Alka Seltzer commercial? Try it, you’ll like it 🙂

    I hope you are doing well, Erik, whatever you’ve decided.

    We’re all in similar boats. Some think they are up the creek With a paddle (have you heard of Mary’s new book?). Others… have their own story to tell.

    Best of luck to ya 🙂

  8. I was diagnosed this past February and started on Copaxone and LDN almost immediately. My neuro prefers this combo. I would suggest that anyone that is “militant” about a treatment has 1) benefitted, or 2) grown weary of waiting for something “proven. While I do understand the theoretical problems with LDN, theory and reality has proven to be very different for most with LDN in that way. If you want to try it, try. If you don’t, don’t. There seem to be VERY few people that are exacerbated by LDN, though it does happen. If something is worth the risk to you, go for it. Just know that there is risk…with anything. If that makes me “militant,” so be it. I prefer to be called an advocate.

  9. I know it’s been quite a number of years since you wrote this post. But I was curious if you eventually tried the LDN treatment. I know that cancer and MS are completely separate issues, but when my sister was diagnosed with Melanoma cancer 2 1/2 years ago and going through chemo, it was our effort to boost her immune system albeit, a bit late since she was already stage 4 and eventually lost her battle.

    But just like @Anonymous comment #8 said, you really have to make that choice and weigh the risks. My sister had very little choice and unfortunately, her choices came too late. Good luck with your treatment.

    • Sorry for your loss.

      No I have never tried LDN, and I agree everyone needs to sort out their own treatment protocol they are comfortable with.

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