Diets, MS, and Endorphins

[Kronk]

I have been intrigued by diet benefiting MS for quite some time but struggled to see how it could help… I developed a theory around endorphins based on reading literally hundreds of PubMED articles, and other sources. I wrote it all down and in what has become a small novel but I will put a brief synopsis here.

Endorphins have been proven to modulate the immune system. Opiod Growth Factor (OGF) is required to interact with its receptor (OGFr) in order to create endorphins. The OGFr is located in the nucleus of cells and that is where I think the link between diet and MS is…

Numerous studies have proven that people with MS have too much saturated fat in their plasma. Saturated fat is crucial in diet and makes up to 50% of a cells membrane, the outer layer. Cell membranes are selectively permeable, determined by the ratio of saturated to unsaturated fats. Poly-unsaturated fat makes them more fluid allowing more interactions, while saturated fat makes them rigid. Too much saturated fat and the cells would be effectively sealed off from interaction. Plasma injection therapy has been proven to help people with MS. Plasma created outside the body would not have the same cell makeup issues and could explain its efficacy.

By limiting dietary saturated fat the body would not have a large reserve to draw from in the creation of new cells. Dr. Swanks research showed a significant improvement in patients who consumed less than 17g of saturated fat per day vs. those who did not. His success rate was not 100% however, approximately 21% of his patients continued to decline, much like the other popular MS diets. I think that is because diet is only one piece of the puzzle.

Creating more OGF is as essential as creating more receptive cells. LDN is probably the most effective drug for increasing OGF. It has legendary anecdotal efficacy but doesn’t work for everyone. I think this is due to the saturated fat/ cell issue. More OGF doesnt mean much if it can't interact with the OGFr. If the two do not connect there will be no increase in endorphins. My thought is if we combine both diet and LDN we should see benefits.

[Pkar2]

Thank you, Kronk.

I do agree with you and that is how I am handling my MS. Low saturated fat and LDN.

[JerryD]

Very informative post. There has been much information about the role of FAT in the health of MSers, mostly credited to Swank's work. Good job of compiling many of the facts, as they exist.

[fishead]

I was told by more than one neuro that OMEGA 3 fats ARE good for those of us with MS

[misslux]

How does one go about testing the amount of saturated fat in their blood? I mean, is it a standard test?

[Kronk]

OMEGA 3 fats are poly-UNsaturated so that statement would make sense.

I don't think testing for saturated fat is a standard test. I have read of 3 separate lab studies that were done that proved that saturated fat is higher in the plasma of people with MS vs. "normal"" people. The plasma is basically the colourless fluid part of blood.

I doubt this theory is the smoking gun for MS, but the science makes sense to me. Some people on LDN do not benefit, most do. Some people on diet do not benefit, most do. I think there is a link in the efficacy of both.

[misslux]

Yeah, the reason I ask is because I've been vegan for 12 years well before any MS symptoms. Relatively healthy diet and only two colds in that 12 years. Weight has always been ideal, no deficiencies aside from vitamin D. Obviously I don't really fall into the diet camp of symptom alleviation.

[JerryD]

Then there is the question of how ones liver processes fats and cholesterol. Again, there has been precious little study devoted to these subjects.

[CaroleK]

very informative

Thank you, Kronk, for your thoughts on this topic. I'd love to read more about it and will do a little searching myself. I believe that diet is absolutely part of all of this and wish the medical community would get on board with promoting a low saturated fat diet for MSers, or, if not, at least listen to their patients when the topic is broached.

I am meeting with my neuro next week to ask her to prescribe LDN...I doubt she will, but, if she won't, I will go elsewhere (she wants to put me on Tysabri...I've failed on Betaseron and Tecfidera). I'm hoping to test that theory of the efficacy of LDN for people on a low saturated fat diet (I try my best to follow the Swank diet and definitely keep my daily saturated fat level below 15g).

[JerryD]

CaroleK,
I had an appointment with my neuro, last week. i asked him about LDN and if he would prescribe it for me. ( I have been getting it from a 'naturopath' for 3 years). My neuro refuses to prescribe it. He says he doesn't believe it shows any benefit at such low dosages. So I go around him and use my naturopath. It's a pain. I hope you have better results than I did. Good luck

[Myoak]

CaroleK,

Be prepared that your neuro may be very, very negative if you want to try LDN. All doctors know something about naltrexone but often very little about low dose naltrexone. Typically, doctors don’t deal with LDN, therefore know little about it and are rarely in a mood to hear more from a patient.

But if you are gentle in explaining even if wrong you would like to try LDN for 3-6 months they may agree to monitor you and take another MRI in six months. Sadly, be prepared to be abandoned and told to go elsewhere.
Maybe LDN won’t work for you and Tysabri, or another DMT will have to be considered so it would be great if your current neuro would agree to monitor you, or see you again in six months.

Tysabri can be effective, about 1/3 of those on it show a halt in disease progression. But it carries a deadly risk of PML. LDN is non-toxic. Repeat, naltrexone in low dose has no toxicity. Zero. None. If ‘first do no harm’ is not just a motto, why not try something non-toxic and inexpensive before taking a big risk in using a DMT with dangerous side effects? Yes, doing so would delay taking a traditional DMT and MS could get worse but it is your life and your choice. You have to live with the decision, not your doctor.

If you like, Google Dr. Jill Smith (Penn State) and Crohn’s Disease. She has given LDN in FDA approved studies to children. And had stellar results, I might add. I expressed my gratitude to Dr. Smith at the LDN conference last month. Quoting from my notes she said, “If LDN works results will be seen by the 12th week”. Keep in mind she is a Crohn’s Disease researcher. Other doctors at the conference indicated they like to give LDN a six months time window for effectiveness in MSers.

At the conference Dr. Smith stated that the FDA had required stability studies for pediatric patients using LDN. Naltrexone is very soluble. The standard for LDN is 5 days at room temp and 60 days refrigerated, she said.

People sometimes get Revia in the US or order Naltima from India. Both are 50mg tabs of naltrexone. They sometimes crush the 50mg tab and mix it with 50 ml of distilled water so 1ml equals 1mg. Thousands of people get prescriptions for LDN and have them filled at compounding pharmacies. I understand one pharmacy in Boca Raton, Florida fills over 10,000 LDN prescriptions per month.

One pharmacist (Dr. Skip Lenz) published his titration schedule for LDN as follows:
Skip Lenz’s LDN Titration Schedule
(1) 1.5mg naltrexone x 30 days
(2) 3mg naltrexone x 30 days
(3) 4.5mg naltrexone thereafter

That schedule is taken from Cris Kerr’s free online book, “Those Who Suffer Much, Know Much”. She personally emailed me permission to quote that book and explained anyone may quote her book as long as they are not profiting by doing so.

Lastly, in my personal experience it seems more MSers take 3mg LDN than 4.5mg. It is a matter of individual preference.

CaroleK, my goal is to inform, not recommend. I really strive to provide accurate information for you or anyone interested. MS is such a tough disease. The more we know, the better decisions we can make about treatment. Good Luck!

[Myoak]

“My neuro refuses to prescribe it. He says he doesn't believe it shows any benefit at such low dosages.”

Truly, a remarkably ignorant belief.

You definitely do not want naltrexone at high dose because it increases cell proliferation and pro-inflammatory cytokines. The entire reason for taking LDN is that it works in direct opposition to the way it does at high dose. At low dose it reduces cell proliferation and pro-inflammatory cytokines. Good Heavens just tell him to Google “cell proliferation and LDN” I am shocked that so many doctors are so poorly educated.

Perhaps, he should interrogate the basis for his belief and check out the following scientific studies. It’s called low dose for a reason… it’s not high dose.

A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis. Mult Scler. 2008 Sept http://www.ncbi.nlm.nih.gov/pubmed/18728058

A pilot trial of low-dose naltrexone and quality of life in multiple sclerosis. Ann Neurol. 2010 Aug http://www.ncbi.nlm.nih.gov/pubmed/20695007

Low-dose naltrexone for disease prevention and quality of life. Med Hypotheses.2009 Mar http://www.ncbi.nlm.nih.gov/pubmed/19041189

Safety and tolerability of low-dose naltrexone therapy in children with moderate to severe Crohn’s disease: a pilot study. J Clin Gastroenterol. 2012 Dec 13. http://www.ncbi.nlm.nih.gov/pubmed/23188075

I know you are aware of all these studies Jerry; I just wanted to provide them for others. Best to ya!

[misslux]

CaroleK,
I had an appointment with my neuro, last week. i asked him about LDN and if he would prescribe it for me. ( I have been getting it from a 'naturopath' for 3 years). My neuro refuses to prescribe it. He says he doesn't believe it shows any benefit at such low dosages. So I go around him and use my naturopath. It's a pain. I hope you have better results than I did. Good luck

Do you find it has helped?

[CaroleK]

Thanks, Jerry, for the well wishes...I do have a backup neurologist to call if my primary refuses. This second neurologist did say she has prescribed LDN for 'symptom relief' along with a primary med (i.e., Copaxone). Maybe I can go that route. If not, I know of several other doctors (holistic, integrative) who do prescribe LDN.

Myoak, I understand and completely appreciate that you are not trying to persuade anyone but rather to just inform, and inform you do! I can't tell you how grateful I am for all the homework you have already done on these topics and to have this site and the many extremely well read and informed people here to help educate me about topics that aren't discussed at the neurologist's office.

[Kronk]

I know you are aware of all these studies Jerry; I just wanted to provide them for others. Best to ya!

My neuro did prescribe me LDN after i brought him in several of these papers to review. He said sure we will give it a shot, he doesn't chalk much up to its efficacy but he said it cant hurt. I am sure he only does this because I am sticking with my primary therapy of Copaxone.

I will say that 30 days after starting on LDN the vision in my damaged right eye changed... i wouldn't say "improved" vastly but i noticed the acuity got significantly better but the contrast got a little worse. Overall a net benefit. Aside from that my mood has got better whether related or not. For the cost at about $1 a pill its worth trying. I am trying several other therapies that I will post soon.