Has anyone tried the diet on http://direct-ms.org?

[Suzanne78]

There is a very interesting web site with a diet for MS.  The theories they present seem to be backed-up with scientific data and the testimonials are quite impressive

The web site - http://direct-ms.org

Do anyone have any experience with it?  It is very strict.  I have tried it but have not adhered strictly.  Maybe hearing other relate their experience will be motivating.  

Suzanne

[Suzanne78]

Thank you so much for your first hand account of how this diet helped you.  Now I am motivated to try again.

Suzanne

[mammon]

I'd be remiss if I didn't mention not to overdo the vitamin D... I did some research on toxicity levels and honestly believe 8,000-10,000 IU/day is "safe" although other things like how much sun you get factor in. Please do your own research and don't OD on my account :)  

[mammon]

I'm a little shocked no one else has tried this diet. I have MS, and within 1 week of essentially the direct-ms.org diet/supplementation and I started getting better.

My biggest symptom (other than fatigue) started this past March... my left leg became numb and extremely weak. It had been numb at times in prior years but never weak or anything more than the slightest annoyance. This time it was almost impossible to walk, my knee had no "snap"... basically I could stand but none of the muscles really worked at all.

So, I made the terrible decision to go to the ER with really crappy insurance... am now saddled with a 30k+ hospital bill for 5 days of treatment including prednisone and an MRI. Now, the steroids definitely alleviated the symptoms (not 100%) and over the next month or so I continued to improve.

Until August... it became hard to walk again and the weakness started coming back with a vengeance. It got worse and worse. Meanwhile I stumbled on the Roger MacDougall pamphlet and ms-direct. I immediately started on fish oil and vitamin D and stopped eating gluten. Within a few days I stopped dairy as well.

The biggest impact was the vit. D. Even now I take 10,000-12,000 IU/day (probably a tad too much even) but within a few days my leg reversed course, although (even now) very very slowly. But surely, and I think that's the important part for crediting the diet/vitamins. The ONLY setbacks have come like clockwork 2-3 days after "cheating" with gluten and/or dairy.

There's no doubt in my mind without this diet/nutrition I'd have needed another prednisone treatment. It's just obvious.

That's the other transformative aspect. When my leg was first affected, it never got better, just worse and worse and worse. That's consistent with the traditional understanding of the disease as well. However, once I started the diet I got 'incrementally' better, that is the first week I could walk a couple blocks before needing to rest an hour or two, the second week farther. As of now, 2-3 months in, I'm still not 100% but still steadily improving and closer to 100% than I've ever been even including after the steroids. (admittedly, the steroids work MUCH faster but the side effects really suck)

I can almost run - I did a little today, which is thrilling since I've been unable to since Feb. Neurologist - at least mine - don't have any insight. They have a handful of boxes they can check, they are extremely scientific and conservative (who can blame them w/ lawsuits etc) and I feel they are almost exclusively focused on pushing the *insanely* expensive yet not 100% effective drugs.

Read the ms-direct guy's research on immunosuppression (which is what the vit. D does, also what corticosteroids do) and leaky gut. (avoiding the stimuli which "rile up" the immune system in the first place) I could do a much better job with the leaky gut aspect, I eat tons of corn, potatoes, and rice, but hey my diet was almost exclusively gluten grains, burgers, and cheese prior to my illness (coincidence?) so it's hard to adjust since I also don't cook.

Anyway, I'm convinced of a few things:
- Everyone is different, but I have to believe most/all will respond to some combination of avoiding gluten, dairy, food allergies etc.
- The drugs probably "work" to an extent (thankfully never tried them) but at what cost? Does the term pre-existing condition mean anything to you? I hate insurance companies with every fiber of my being.
- You can't cheat. For example if you cut out gluten for a couple weeks and symptoms subside a bit, if you go eat a couple cookies they will come back. I had mcdonalds once and it set me back about 1.5 weeks. The sensitivity (at least for me) is insane. So it's not like diabetes where you can get away with just taking more insulin sometimes etc. Not that that's ever a good idea, but still.

That's about it, sorry for the stream of consciousness rambling but I wanted to chime in as someone with bona-fide MS (definitely was on the path to secondary progressive at least) who very clearly saw results with this stuff. It's free, they don't want your money, and you have nothing to lose.

The hardest part is giving up the foods. (pizza was my favorite food!) But you really have no choice. I mean, the sobering reality is that MS will diminish your quality of life. In my case, I don't get to have pizza, burger, lasagna etc. But I get to walk, and hopefully soon to run again. At least read MacDougall's pamphlet - it took him 4 years to see results! But then again he was nearly dead and a complete vegetable at the outset.

If anyone has questions let me know at mammonmachine at liamtoh backwards.

[want2bike]

Think this is based on the paleolithic diet.  This diet has shown success with threating MS.  It will cost you nothing if you google Paleolithic diet and you can find out what it is.  Mainly eating fruits and vegetables and getting protein from fish, turkey and chicken.  I been following the diet and my health has never been better.

http://www.direct-ms.org/bestbet.html

http://www.youtube.com/watch?v=BVn-jmCi4zI&feature=fvw

[Heartshome]

If a person can possibly help delay MS progression by eating a diet that does not involve anything other than eating what is good for their heart and health, and does not involve increased cost or any rip-off hype, why on earth wouldn't they do it?

Being on such a diet does not mean that you go off your DMD, it just means that you are trying everything possible to improve your health.

It's not a big deal, but it does mean changing your eating habits...for the better. After awhile you won't crave the stuff you used to eat. (Believe me, I didn't believe it either, but it's true.) Plus, there are so many wonderful recipes that you truly aren't deprived at all.

My husband is doing this with me and loves it. He's lost weight and feels healthier. So do I. I wouldn't go back to how I used to eat, no matter what.

It's worth it to know that you are doing everything you can for your health. Explore it, you have nothing to lose but weight! And it's free...no gimmics. Google SwankMSDIet.

[patientx]

I was afraid of that; the links got cut off.

Here they are in cut-and-paste form:

http://www.clinicaltrials.gov/ct2/show/NCT00852722?term=
multiple+sclerosis+diet&rank=1

http://www.clinicaltrials.gov/ct2/show/NCT00638196?term=
multiple+sclerosis+diet&rank=4

[patientx]

We may see that research in the near future.  At least 2 clinical studies involving diet are being planned:

http://www.clinicaltrials.gov/ct2/show/NCT00852722?term=multiple+sclerosis+diet&rank=1

http://www.clinicaltrials.gov/ct2/show/NCT00638196?term=multiple+sclerosis+diet&rank=4

Also, a study had been done looking a PUFAs effects on MS:

http://www.ncbi.nlm.nih.gov/pubmed/16099630

With enough Googling, I was able to find the entire article for free (the location escapes me now).  This one is interesting because one of the authors is Rick Rudick, who is at the Cleveland Clinic.  Admittedly, the size of the study was small, and it only showed modest benefits.

[shoshin]

I just wanted to say that although it's true that no dietary interventions have been shown to cure or improve MS in clinical trials, it's also not been scientifically proven that they don't. The rigorous studies haven't been done and may never be done because they're very expensive to do and have a lot of implementation obstacles (like getting people to stick to the diet, or at least close enough; plus how are you going to blind people to their diet). Also, unlike with pharmaceutical interventions there's not some big company with large profits to gain waiting in the wings to fund these kind of studies.

It's also much harder to prove that dietary interventions (or anything else) have a significant effect on such a variable disease as MS than with something like heart disease, high blood pressure, or diabetes where there is something clear-cut to measure (one drawback to the current MS clinical trials is that they're not even sure they're measuring the right things) that can lead to good evidence that dietary interventions can have a significant benefit at least for some people. Doctors also seem to shy away from dietary recommendations because they don't think patients will comply with them (and how many people here have ever been on a diet without cheating? On other hand, if you wanted it badly enough, you probably could, or could come close enough).

In 2007, the Cochrane Review said that

"PUFAs [polyunsaturated fatty acids] seem to have no major effect on the main clinical outcome in MS (disease progression), and does not substantially affect the risk of clinical relapses over 2 years. However, the data available are insufficient to assess any potential benefit or harm from PUFA supplementation. Evidence bearing on the possible benefits and risks of vitamin supplementation and antioxidant supplements in MS is lacking. More research is required to assess the effectiveness of diets interventions in MS." (http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD004192/frame.html)

In 2009, Mehta, Dworkin and Schwid wrote an article stating that

"Considerable interest has been shown in the potential anti-inflammatory effects of polyunsaturated fatty acids (PUFAs) in multiple sclerosis (MS) and other autoimmune inflammatory disorders. Studies suggest a modest association between consumption of low levels of unsaturated fat and an increased incidence of MS. Moreover, in vitro and in vivo studies have demonstrated that omega-3 and omega-6 PUFA supplementation can reduce immune-cell activation via a number of complex pathways. Noncontrolled and controlled clinical trials of PUFA supplementation in patients with MS have, however, provided mixed results. These studies had important limitations in design and selection of outcome measures, and these factors might partially explain the inconsistent results. We propose that the potential role of PUFAs as disease-modifying, anti-inflammatory treatments for MS should be revisited in proof-of-concept trials that use accepted MRI outcome measures."

(http://www.nature.com/nrneurol/journal/v5/n2/full/ncpneuro1009.html)

So the general conclusion seems to be that more research is needed in order to conclude anything.

Anyway, I think it's worthwhile to keep an open mind and eating a healthier diet will at least help general aspects of your health.

sho

[mom9335]

Thanks for you answer.  Direct.MS, in my opinion, is a really good site.  Ashton Embry created this site with all VOLUNTEER effort because his son has MS.  His fundraising provided the money for the Vitamin D study that was presented last season at the yearly Neurological Conference.  That study was vital in opening the medical minds to the safety of Vitamin D in higher doses than previously accepted..
  
Patientx stated my thoughts very succinctly.  Why not think out of the box regarding MS?  His diet is not going to harm anyone, and it just might help control symptoms.  Since  no one knows the cause of MS or if it is one disease or many, the control or cure may not be a uniform **************.  

The bottom line is to be proactive in your own MS journey. And, yes, the FDA has not achieved sainthood yet...far from it!

[patientx]

First, a theory is not valid because it's been through clinical trials.  That just doesn't make sense.  How can a theory go through clinical trials?  A theory can be verified through experiment, but plenty of scientific theories have been accepted before experimental verification.

Second, Betaseron went through 2 clinical trials before being submitted to the FDA.  Teva presented data from 2 trials.  The first included a very small number of participants.  In this trial they dropped 2 participants; if they had been included, the study would not have reached statistical signifance (p<0.05).  I'm not sure where you saw that these drugs went through numerous clinical trails before being approved.

The results for the second Cop-1 trial showed an average annual relapse rate of 1.19 for those receiving the drug vs. 1.68 for those getting placebo.  This is hardly an earth-shattering result.  Yet the drug maker can charge over $2000/month for it's medicine.  I find it odd that people will say "I'm not paying for some quack cure on the internet," yet their willing to accept a cost like this because a drug went through clinical trials.  A  nurse who coordinates the clinical studies at an MS center made the statement to me "clinical trials can be designed to prove anything."  And she's right; they can play with the design of the study, the primary endpoints, and failing all else, the data itself.

I know it's coming across as such, but I'm not a salesman for any dietary approach.  The Best Bet Diet makes no claim to cure MS.  The proponents of it only state that it has maybe kept their disease in remission.  But I find it troubling that people equate FDA approval resulting from clinical trials with proven scientific facts.  Talk about jumping on a bandwagon. No longer is the scientific method used or expected.  The emphasis has shifted to the statisticians.

[jensequitur]

Sorry, I have to disagree with you - the reason a theory is considered valid is because it's been through clinical trials.  Copaxone and Betaseron both have been through numerous clinical trials before being approved for human consumption.

Now, about the diet.  Keep in mind that any high-protein diet that's low in fat will be good for you.  This also means it's good for your MS.  Think of your body as a car.  If you put in bad gas, or if your ports are dirty, or you've got dirt in the gas tank, then your car won't run very well.  If everything's clean and the gas is good, then your car will run better - even if there's some other problems with the vehicle.  Your body is the same way.  Drink plenty of water, stay off the saturated fats, eat plenty of raw fruits and vegetables, and you'll have a happy body, that's more capable of dealing with the insults that MS throws at you.

There is no diet that can cure MS.  I'm sure there's plenty of people who think the diet has cured their MS.  There's also lots of people whose disease has remitted, who haven't tried the diet from direct-MS.org.  So anecdotal stories aren't enough to prove that a diet works or doesn't work.

All I'm saying is, don't jump on the bandwagon of every quack out there.  Take care of your body, take your drugs, get plenty of rest, and exercise!

[diemyn]

I've got a book called the Body Ecology Diet which on the cover claims to cure MS among other things. It is very very strict and on our broke-butt budget it's been impossible to adhere to thus far, but the few recipes I've had were very good; they were soups. I feel like I've had to let go of so much food I like that doing what the book says is just too far, but if I can get confirmation from somewhere that I do indeed have MS I think it might scare me into strictly eating the BED or starving.  If any of you have the money to do the bed diet I highly suggest you do cuz the book has testimonies of people who had diagnosis and were cured so it's worth a try.

[Suzanne78]

Yea for you for saying what I was thinking.  I just did not have the guts.  But I totally agree with you.  By changing my diet I dropped my bad cholestrol from 136 to 45 in 6 months  Yes, I did say 45.  Americans look for a quick fix.  Pop a pill.  I think diet holds the key to healing many health problems.

[patientx]

I've read many anecdotal reports that people with MS are having success with this diet.

I'm going to have to disagree with some of the things mentioned here.  First, no one is selling anything in relation to this; the diet plan is available free of charge on the website.  Second, I don't believe the idea that it can't be valid because most doctors don't recommend it.  Almost all of the doctors that I have come across don't put any emphasis on diet, in relation to most conditions, with the possible exception of diabetes.  When someone I know tested high for cholesterol, he asked about adopting a low-fat diet; the doctor said no, but here's a prescription.  When I have was having some GI issues, I asked the gastroenterologist about diet modifications. He told me, "no, diet doesn't matter."  A GI doctor told me this!  So, I don't think the fact that a doctor doesn't recommend a diet means too much.

Finally, I disagree with the fact that a theory isn't scientifically valid until it has gone through clinical trials.  If that's the case, the neuros shouldn't be so ready to accept the auto-immune theory of MS.  And, despite, the clinical trials for interferons and glatiramer acetate, no one is how they work (or if they even do).  In fact, Copaxone had the opposite effect of what scientists were initially expecting, and this led them to try it in humans with MS.  I think way too much reliance is placed on these trials, that something isn't valid until a cohort of x patients is tested, with half receiving placebo, and a p value of <0.05 is obtained.  

[Suzanne78]

Jessica,

Thanks  This was very helpful.

Suzanne

[Khiba]

This a sensible diet for MS. Avoiding gluten and dairy especially can make a big difference in ones health. Using high omega 3 oils like flaxseed or olive is a good idea as we get a bad balance of Omega 3s to Omega 6s in the SAD.

Cutting out sugar is always a good idea! Everyone needs to up their fresh fruit and veggie intake! Lean meats and fish is important for protein and amino acid balance.

Nuts and seeds are good sources of fat (and we need fat) plus protein and some fiber.

I follow this type of diet and my weight is low and my blood work is great.

Soy was the first thing to get out of my diet because it is mildly estrogenic and makes me feel just swful. plus its one of the most genetically modified plants and is heavily pesticided and has to be intensely processed to make the soy beans edible.
As a horticulturist, what I learned about soy scared the beejezus out of me. Soy is not a health food; its a commodity like pork bellies. Just my opinion I could be wrong.

Eat organic if you can!

Jessica

[HVAC]

I would never go for anything someone wants me to buy.

A Dr. with MS suggested a similar diet which I have been on for two years. I have lost weight and my over all health via lab tests and my Doctor is much better.

I have lost the taste for foods I loved, but now love vegetables,fruits,nuts and small amounts of meat.

Each person has to do what works for him or her.

Everyone and there brother tells me to take different supplements. I don't do that. I listen to "the People's Pharmacy" radio show and it always seems something goes wrong with too much of one thing or another.

Alex

[Lulu54]

I would just like to point out the obvious - if this diet worked this well for MS, don't you think all of the doctors would recommend it?  

To be a valid scientific argument, it must have undergone rigorous testing and trials to prove their theory.  Nothing I have read here is more than anecdotal evidence (stories),  That said, there is nothing wrong with eating healthy and taking supplements.  Just discuss any major changes with your doctor before adding supplements.  

We know through rigorous tests, what the effects are of something like a heart healthy diet.  There is not such proven MS diet.

Always be wary of the quick fixes promised but not proven, and especially if they are willing to sell you something for that fix!

be well,
Lulu

[opie74]

There is no way that I could cut out that kind of dairy, we practicall live on that stuff around here.

[opie74]

I have not tried any diet, but I will go have a look.