Mar 072008
 

Before starting with me there was a comment about healing MS with diet, which included a link to her website. Certainly “Healing MS” with some diet is nothing new, but I did take a look; though I didn’t read everything.

While I applaud Colleen on her success I do not think diet change alone is sufficient to suddenly stop demyelination. I do think that diet, exercise, etc. can play a large role in your health though, regardless of disease, and that can help anyone. Furthermore, while I have not read the book nor the diet I agree that whole foods are much healthier; although much more expensive.

From the site I gathered that the diet revolved around getting less toxins, which is great. Unfortunately, nasty toxins exist everywhere. Car exhaust, cleaners, pesticides, medicines, synthetic soaps, etc. Even if she has gone to all green cleaners, landscaping, etc. which is something I didn’t see on her page, you would still pick up toxins. For someone on this diet detox program I would expect to see some kind of sauna therapy to purge the rest of the toxins, but I didn’t see that either.

Unfortunately, because of the expense of a whole foods diet this puts this out of the reach of many people. I am guessing that for many people, especially sick people, this plan is way out of their price range.

Finally, I still stand by my former post that L-Form bacteria seem like a reasonable cause for Multiple Sclerosis.

  20 Responses to “Healing MS With Diet”

  1. Hi,

    I have an MS Blogger Project underway over at my place. Please visit MS Awareness, Blogging Friends, and a little Link Love to join in.

    Thanks,
    Lisa

  2. reposted to fixed typos

    “Anonymous” your links are nothing new in the MS realm. The virus, and genetic theory continue to be investigated. While I mentioned I hold onto the L-Form theory I recognize it is a theory, but so is everything with MS. Of course there are researchers investigating this theory: Cell Wall Deficient Forms: Stealth Pathogens, Third Edition by Lida H. Mattman. As noted in some comments MS is not a disease, but a syndrome. In fact the MS name can really apply to anything that scars the brain.

    As an aside to the above. If one was going to be a conspiracy nut you could say that the bacteria theory is being mostly ignored because of money. If MS is a triggered by a virus or genetic then it is a permanent problem. If MS is caused by a bacteria then existing drugs could probably cure the diseases. I suppose that’s why some MS’ers are trying out the Marshall Protocol if they can find a doctor to treat them.

    As to your last comment (was that meant as inflammatory rhetoric?), Lyme, and the co-infections, is much better understood than MS. The controversy about treatment is centered around medical politics. Of course my guess is that since you don’t have Lyme you know almost nothing about Lyme and its pathology. A quick search will yield many of the dissenting articles on treatment; which I am guessing you came across. Kudos to you, and your searching skills.

  3. You are so wrong about so many things that I refuse, as of this comment, to interact with you further. Your usage of material from my personal blog in an attempt to psychologically manipulate me (because you are too intellectually weak to sustain an argument on its own terms, evidently) is utterly inappropriate and abhorrent.

  4. I was not trying to manipulate you in any way. But the fact that you find me intellectually inferior and yet containing enough psychological prowess is interesting. I am not a genius intellectually or psychologically. And since I do not get out much I am going to take what you said as a complement, backwards as that may be. You are clearly only looking toward theories that you find, for whatever reason, comforting or easy to swallow. I just wanted to encourage you to open your mind which has vast capabilities. I am not in any way going to cut you down, because clearly you are a smart young woman. I was just trying to offer some free advice from lessons I have learned.

    Again I wish you all the best.

  5. I’ll say it one last time:

    Your behavior with respect to the usage of material from my blog was both inappropriate and abhorrent.

    Take care.

    Cordially,
    X.

  6. I am genuinely sorry I offended you. Since it was on your public blog I thought it fell under fair use. And honestly I was just trying to offer some advice. I will alter my post to remove the one part that you consider most offensive.

  7. Reposted to take out personal information.

    Anonymous,

    I do not know where the “quasi-evangelical” language and such comes from, and I know you said with all due respect, but your message was not very nice. I am going to assume that was not your intention though, and perhaps my pregnancy hormones are reading to much into it. That said I hope my note comes across with the kindness that I intend.

    First of all, there are a lot of lies about Lyme disease out there. I do not know why, because honestly I do not know where the benefit to lying comes from, other than perhaps the drugs to treat it are comparatively not expensive. Infectious disease doctors deny Lyme as a whole. But throughout history, take for example ulcers, some diseases have been not treated fairly if you will. It took a researcher proving his point by giving himself ulcers and then treating them with antibiotics. Even after that if I am not mistaken it took 10 more years before that was an acceptable treatment. I would hope with regards to lyme that you would consider that perhaps the issue is more complicated that you give it credit. An L form bacteria as a cause is not that far fetched.

    Secondly, “Chronic Lyme” people having any influence is a load of garbage. To get Erik diagnosed was a complete and total pain in the butt, and even with positive blood tests, improvement with antibiotics, and an improved CD-57 every doctor here in Texas will say, supposed lyme disease. Nice. Because there is a lack of awareness does not mean there is a lack of existence. Beyond that my prayer is that Erik does not have Chronic lyme, and every indication is that he does not have it. He is seeing improvement that is taking time. Erik was steadily declining prior to this treatment. My prayer is (knowing that my language is beyond quasi evangelical) that you are seeing a consistent delay in your progression of disease. Personally the interferon’s ask you for a lot of faith, not that I am making a determination of their effectiveness, because you are hedging your bets that they are slowing the delay. All for the low low price of $1500 per month. Again, I am sure that sounded really catty, and I don’t mean it that way, but really the drugs for MS ask for a lot of faith.

    It is also important to note that Multiple Sclerosis is a syndrome. What I mean is it is a description of what happens in the CNS and nothing more. There are lots of reasons why demyelination can occur. In all fairness I hope you can concede that. To say that it all comes down to a herpes virus also takes a lot of faith. Erik is probably the last person who would say that MS comes from one set cause. We both believe that MS is probably several different diseases which is why there are lots of different ways that the disease can progress. But lets say even 1% of MS is caused by lyme… if you were in the 1% or unsure, would it not be better to be tested? If you were tested and found to be positive would it not be nice to get treatment and get better rather than steadily progress downward?

    I do not like using personal stories to make a point. They also ask for a lot of faith and that is how so many pyramid schemes work, but I am going to share some of Erik’s story. Let me assure you, getting treatment for lyme is not easy. You have to find a doctor who is aware of the disease and how to treat it. We travel quite far for Erik to get treatment. However, rather than every 6 weeks, at best, adding a new symptom, sometimes at a much greater frequency, Erik is steadily improving. Yes there have been some setbacks. Two to be exact. TWO IN 10 MONTHS!! That is huge, because his rate of disability was snowballing. Erik also did not consider lyme at the onset of diagnosis because he had been tested. We would later learn that the test was not antiquate for someone with the disease longer than a few months. We were not looking for another diagnosis, he just posted pictures of a rash on his back on this blog and several people personally wrote him about it. That is how he got checked out to begin with. This has been a long journey, and on this blog Erik is sharing his experience. He is not selling anything, or asking you to believe anything. There is no motivation in his blog other than to document his experience. When Erik started a few years ago, there were not many blogs and he had lots of questions. So, he just got started.

    I genuinely hope that this is taken with kindness. Just a cursory look over your blog tells me that you are a very smart young person, but you are sorely lacking on life experience. (I am sure you will vemintely disagree with that assertion, but wait 10 years and then answer.) Again you are an educated person clearly, but make sure to open your mind and look at all options. Use the scientific method to come to conclusions. Examine as many different things as you can with regards to MS and your health in general. Do not be afraid to try new things. I noticed that you knocked severely people, namely the person Erik speaks of in this particular post. I do not see where she is running a scam. I did not notice one thing she was selling. If you do not think that diet is important you are wrong. I also thought it was interesting that your disbelief came partially from her coma. People with MS have weird symptoms. Erik would cough until he threw up every day for three months. EVERY DAY at least once, but usually multiple times a day. Find that one in a book or a study on it! It is a weird thing to happen. The brain is very powerful, and having different areas short circuit can cause all kinds of problems. I am sure before your journey is over you will have a symptom that you know is in your heart part of the MS that a doctor is going to tell you is not MS, because there is no study.

    Again, online you have a tough exterior, but I imagine at the heart of the situation you are a young woman who is trying to find her way in life with the cards that you have been dealt. I pray that there is a cure for MS, if it is global great, if it is by finding the different diseases that are causative and treating them individually that is also great. I am sure there are lots of things you would firmly disagree with in my post, and that is okay. I also hope you know that I am not talking down to you. I am sure you can find plenty of things wrong with my grammar and/or spelling, but I hope my message that you should open your mind to other possibilities will not be lost. Sometimes you have to fight to be heard. Trust me this is something Erik and I know all to well. Again, I do wish you nothing but good things.

  8. Actually, yes. I would appreciate it if you’d remove your veiled ad hominem attack and direct links to my personal blog from this comment thread.

    Thanks.

    Cordially,
    X.

  9. It is removed now.

    I don’t believe the personal advice falls under an ad hominem attack. Correctly speaking I would have to use that against your arguments and specifically what you had to say. My thoughts were separate and related to things I had seen in your blog. Clearly unsolicited and unappreciated advice.

    In your postings for whatever reason, I have seen:

    Appeal to ridicule, ie “Or it could be that the people claiming to be “cured” of MS with antibiotics are actually experiencing a combination of a.) the anti-inflammatory properties of antibiotics in combination with b.) the placebo effect.”

    The logical fallicy of burdeon of proof, “Was I intending to be “inflammatory”? No. I’m intending to be challenging. I realize that dissent is not tolerated among the Lyme Evangelists. But it’s about time more people started looking critically at what said camp is proposing and presenting as “fact” instead of mindlessly buying into the hysteria.”

    and one more if I may, circumstantial ad hominem, “I know enough about Lyme. I have a close friend who claims to have “Chronic Lyme” but who I actually believe is probably suffering from either Munchausen Syndrome or hypochondria.”

    I am not the sharpest knife in the drawer, nor am I as educated as you are, but I do believe that officially that argument you put out is “the pot calling the kettle black.”

    I am not trying to start anything with you and again I wish you the best, but even changing my post to apease you cannot generate a kind word. I am not looking for it, and honestly this is my last with regrads to this.

    I really do wish you the best, and I hope that you will see I was in no way trying to manipulate you. I have nothing to gain by doing so, and I really was trying to get you to look into other ideas rather than jumping on one train of thought.

  10. You are pretty much failing at life right now. Really your best bet would be to actually stop trying to engage with me instead of just talking over and over and over again, about how you are going to stop engaging with me while simultaneously continuing to engage with me.

  11. just remember – there are no absolutes.

  12. Erik, I think that this was the most important part of your message. There is often no ONE answer or approach in addressing one’s own health.

    “While I applaud Colleen on her success I do not think diet change alone is sufficient to suddenly stop demyelination. I do think that diet, exercise, etc. can play a large role in your health though, regardless of disease, and that can help anyone.”

    I apologize if my MS Blogger project has brought you any indirect grief. My wish is to strengthen the MS community in spite of our differences.

    Personally, on my blog, there has been a woman (and not “Anonymous”) who feels it necessary to put down my choice including the cost, and the choice of others, to use one of the disease-modifying drugs rather than a strict diet approach. She claims that she has not found like-minded MSers, but I know for a fact that there are others out there who share her conviction. And that those others do not avoid associating with the drug-users.

    BTW, I know nothing about Lyme disease other than in the process of being diagnosed with MS a Lyme Titer was conducted in bloodwork. There are so many mysteries out there.

    My sincere hope is that you choose to participation in the larger MS Blogger project. Thank you. Lisa.

  13. Lisa,
    No problem. I’ve been running this blog for a while, and maybe a little flame war once in a while keeps everyone awake. 😉 Historically the flame wars have been about my dissent on Mannatech/Ambratose so this is at least something new.

  14. Lisa,

    Thanks for your kind comments. Like Erik said this isn’t the first time he has had someone try to start a flame here.

    I do want to note, however off topic it is since it has been brought up, that there are other labs that you can be tested at for Lyme disease. Erik was tested at a lab in New Jersey. I am only typing this in because if someone comes along and reads this post, or if it is indexed by Google, I want others to know that there are options as far as being tested. IgeneX had/has issues. Every lab does. Lapcorp has screwed up labs for me more than once and we don’t call them a failure. (Specific examples can be provided on two separate occasions.) Don’t get me wrong, I am not making excuses for them or for IgeneX, but you can’t throw the baby out with the bathwater. Also, there are other tests that can point to lyme if not specifically diagnose it that are not as hard to ascertain a result, such as the CD-57. It is my understanding that this specific t-cell has no other known diseases attacking it. Granted, that does not make it diagnostic particularly since there is the unknown factor of other diseases.

    Again this is so off topic. The point was about Colleen’s diet, which I commend her for, and I applaud her success. Lisa you are right, there is no one right approach, and everyone who is struggling with dymelenation does the best that they can. Regardless if you are on the CRAB drugs, Tysabri, on herbs, following a diet, or God forbid getting better on antibiotics, you have to do the best that you can. All of our decisions about Erik’s care have been made after examination, contemplation, and prayer. This blog is about Erik’s journey with the disease and the things he has learned along the way. Nothing more.

    So bring on the links, you have a lovely idea with the carnival, and you never know what all you can learn from other people. Besides, Erik might get back in the habit of blogging again! 😉

  15. Having gotten off track I will summarize again my thoughts on my original post. I see value in moving to a less toxic lifestyle as Colleen has through her diet. Less processed foods are better for you. On the other hand the toxins causing demyelination seems unlikely. Regardless, I am glad Colleen found something that worked.

    “Anonymous” has a dissenting view on her blog here. Per the Blog entry “These women are scam artists,” but I didn’t see where Colleen was selling anything.

  16. Erik,

    What Colleen is “selling” are misleading ideas (i.e. – “MS can be ‘cured’ by following a diet!” Etc.).

    Ideas, like material objects, are also commodities.

  17. “SAUNA”?

    Man, that was one of the FIRST things i was told (when there was still a doubt if i definitely had MS or not) as one of the top “no-no”s.

  18. pmb,
    In this case this person was fixing her MS through Detox. Sauna is usually a common component for those who detox, and I would have expected her to do it.

    In your case I don’t know why it was one of the top no-noes. With demyelination getting hot could bring on old symptoms or make current ones worse, but that resolves when you cool down. Wasn’t the hot water bath how they used to test for MS? Was there another reason for the sauna ban other than heat?

  19. I am going to MS blogs and searching ‘diet’ to see where people are about using diet to alleviate MS symptoms. I can see on this blog that someone has already burned the diet bridge for everyone here by advocating a not so exciting toxin free diet. I am trying to spread the word about the incredible success I have had with the autoimmune protocol of the paleo diet. I started a web site to help people navigate the diet and my goal is to write a book about my experience. In the course of researching and talking to people about it I have found mostly apathy when it comes to dietary solutions. Which is totally understandable. I suggest reading ‘The Paleo Solution’ by Robb Wolf or ‘The Paleo Solution’ by Loren Cordain for a mind changing experience. And, if you happen to adopt the diet and find success or if you have questions, I would love it if you checked out my web site or my FB page, both titled nutrisclerosis.

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