This Is MS Multiple Sclerosis Community: Knowledge & Support

It's from http://www.mult-sclerosis.org/news/Apr2 ... racts.html

Hi Treez and all,

Happy to see a lively thread about the Swank diet here as I like the Swank diet and go often to the Swank diet website. (same Treez, I'm assuming! )

As I have said here, there and will say here again, I really like the Swank diet. I started the diet a little before my dx. I started the diet in the spring of 03 after an attack that I thought would lead to diagnosis, which it did in summer of 03. At the time I was carrying around extra weight and the attack in spring 03 gave me some gait trouble (which hasn't completely left). I have lost about 55 lbs on diet alone (exercise is a challenge with the leg trouble) without feeling hungry and without craving. People also comment on how good my skin looks and my hair too (must be that fish oil). The only time I believe I've gone off the diet is in recent months with a peanut butter and jelly binge. And my intake of fatty fish is probably too low. (I don't like fish...) Otherwise, I find it easy to follow and like it a lot.

As for other eating habits, I try to get plenty of veggies, fruits and nuts. I try to eat a lot of berries too.

I haven't yet gotten a hold of Jelinek's book yet although I'd love to get a copy. I have found that it's a little hard to get in the USA. (Any suggestions?)

Happy Swanking,
jazzcat

March 05 edition is available from Amazon Uk <shortened url>

_________________
John
I am what I am

JFH,

Thanks! I'll investigate.

Happy Swanking,
jazzcat

You should be able to get the 2005 edition from Barnes & Noble after 8-31-05.

NHE

I thought I would post my experience on here also.

I was diagnosed with MS at the end of June this year. My symptom was Nystagmus in my right eye, similar to diplopia, however it is not optic neuritis. I had an MRI, Spinal Tap, and VEP. My MRI showed at least a dozen small spots, evenly spread over my brain, the spinal tap showed a 1 point elevation from the norm's for CSF protein, and the VEP showed delayed response in both eyes, although strangely, my left eye showed a slower response than the affected eye??

Since then I have had enough time to re-evaluate my life, and my priorities. I've not had another symptom since (knock on wood). One thing I noted from my pre-dx days was that I was drinking a massive amount of Diet Pepsi, and eating horribly. I changed all of that about a week after diagnosis and doing an obsessive amount of research. I decided Dr. Embry's approach would be sufficient for me as far as diet goes and so I stuck with it. I have found that it was fairly easy to stick with since I love salmon and tuna, and chicken. Like I said, I haven't had another symptom, and I feel better than I can ever remember. I can think faster, and have more energy.

I am going to push my neuro for another MRI in a couple of months. I want to see what the disease looks like now.

Oh yeah, I forgot to mention. I am also taking Rebif 44mcg tiw. I have no side effects from interferon; however I don't like the injection site reactions. I always get them in my abdomen, but never in my legs??? Out of fear I take Rebif, because if the diet doesn't slow it, maybe the interferon will buy, and I do mean BUY me another 30% worth of time.

Did I mention that MS sucks??? I realize I am lucky (so far anyways) but what is up with the researchers not being able to figure this beast out??? what the heck?

I didn't have time to read everyone's comments on this thread, (I did red the first page of them, though), but thought I could at least give my experience, since it's extensive. I was diagnosed in 1997. (Thought to have "probable MS" for 4 years prior to that.) I started on Swank about 1994, but didn't feel it was enough, even though I was taking supplements too. Came across the Best Best Diet about 1996 and started that. (Which is Swank PLUS.) Continued to go drastically down hill even on the BBD for 4+ years. Then I went on a VERY strict anti-candida diet, which was sugar, dairy, fruit and grain-free. I combined that with the advice of both Swank and the BBD to keep saturated fat to a maximum of 15 grams. I got dramatically better over the following two months. (Though it's a difficult regimen that I still maintain for the most part.) Went from using a cane and vertigo, numbness and tingling, spasticity etc. etc. to walking 1-2 miles a day briskly. HOWEVER, this last year, I have regressed. (Not on the diet.) But my symptoms have gotten somewhat worse again and I have new active lesions for the first time in many years! I believe it's because of the fact that I have been having a difficult time emotionally and stress-wise. Oh, forgot to mention that I was on Copaxone from early 1999 through some time in 2003 or 2004, and went off because I became convinced it was only diet that was helping me. Since going off Copaxone, I have gotten worse again, so I now believe the Copaxone was helping significantly and I am back on it.

I am sure a healthy diet is very important, (eliminating processed foods and transfats and limiting sat. fat and possibly eliminating grains and defintely eliminating sugars), but I believe emotional well-being is equally important, and I'm pretty sold on Copaxone now too.

Observant,

I have a question for you - when you said you regressed in this last year, had you gone off the diet previous to the relapse? You also stopped Copaxone after stopping the diet? Or did you stop the diet after stopping Copaxone? I am curious as to whether you dropped the diet and the Copaxone about the same time.

Lisa

Lisa,
I never dropped the good diet. I can see how you misunderstood, because I said I regressed with "not on the diet" in paranthesis. What I meant was that I hadn't regressed in my use of the diet, I regressed in symptoms only. (After I typed that I'd regressed, I was afraid someone might think I had regressed in being strict on the diet, but I did not.) In other words, it can't have had anything to do with diet that I regressed symptomatically, (and MRI-wise), so I think it was that I'd stopped Copaxone, or it was that I was having a lot of stress....or maybe both.

What I was trying to say was that I quit the Copaxone, because I attributed my improvements to my diet, but it wasn't just the diet, because even on it, I regressed.
Observant

Thanks for the clarification. One other question: At the time you went on the really strict grain-free diet, did you also start Copaxone at that same time, or did you start Copaxone after the improvement you noted from the diet change?

I am admittedly fixated on diet issues because that is the only thing available to me to try, having not been able to tolerate Copaxone, believing the RABs not an option for me and having no physician support to try antibiotics.

Lisa

Lisa,
I went on the Copaxone after I started the Swank diet, but before I started the grain-free diet. I started Copaxone in May of 1999. I started the grain-free diet in about February of 2,000, so almost a year later. I continued to get worse MS-wise all of 1999, and only improved after I'd been on the grain-free diet a couple of months. That's what made me think it was the diet that was helping. And, for all I know, the diet may have been all that was needed, if I could have kept the stress down. But, after a couple more years, I went off the Copaxone and it was after that, that I started feeling worse MS-wise. (But, the stress was much greater too.) But, as I said earlier, I think it takes more than any one thing to make us better, so now I'm trying to cover all the bases by staying with the good diet, doing more to learn how to handle stress in less harmful ways, and taking the Copaxone.

I've had some odd things happen, since I've been back on Copaxone and I'm wondering if they are side effects, so who knows how long I will be on it. I am normally very opposed to medications for MS. Copaxone is the only thing I would take, because it's just amino acids. (In a specific protein chain.)
Carol

OK, I'm a thirty-four year old female. I recently got an MRI that showed I had white matter disease, I have some vague symptoms that are definitely MSish, numbness & tingling in face, blurred vision in one eye, seeing flashes of light when my eye moves, inexplicable fatigue, hand tremors, etc.

At the last visit when I saw the results of my MRI, the doctor read the clinician's report (for the first time in front of me) annouced that I did in fact have white matter disease (which I had not heard of before this), answered a call on his cell phone, walked out of the room, then told me to come back in three months. That's it. No explanation, no discussion.

So I'm stuck thinking, hey I might have MS, might not. But screw this useless doctor, I'm going to be proactive and try to head progression of possible MS off at the pass. So I got online found out about the Swank diet, I also found out about the Ashton Embry "Best Bet" diet.

I'm totally confused, one says you can eat wheat, one says you can't, WTF. The Best Bet diet seems crazily restrictive, but I'll do what I gotta do, however, the Swank diet's been around the longest and apparently has decent results.

I don't know what to do. What are the best supplements to take, I'm currently taking Omega 3 - Fish Oil, Ginko-Biloba, and a complete one-a-day vitamin.

What else can I do? What nutritional routes have worked for you? Is there anything in particular I should avoid other than animal fats?

I just ate some cashews thinking, it's OK on the Swank diet, then looked it up on the "Best Bet diet" and it was a big no. Also the Swank diet says soy is OK, but the "Best Bet diet" says no soy because it's a bean. I would have never guessed soy is bad for you. This is really hard to figure out. And not just a little scary.

I too am a Swanker, and have cut out gluten - was already a vego, but eat fish - no dairy. Occasionally I do get sugar cravings !! So I allow myself a little Halva (it's a Greek sweet made from sesame seeds and sugar), very addictive - but I just have a little - and there's always a tiny little bit of dark chocolate on the odd occasion. .......................

Park,

I'm no doctor, but isn't "white matter disease" awfully vague? I'm pretty sure that white matter disorders can involve many other factors other than MS, so you should probably narrow down your diagnosis before starting any diet. Maybe it's time to seek a second opinion or drop your existing doc all together if he's taking cell phone calls while discussing your MRI results. MS should be somewhat easily diagnosed via brain and spine MRIs, examination of spinal fluid via spinal puncture, and clinical history.

With that being said, I think it's safe to say that most of us on the "Swank diet" take fish oil and/or flax oil supplements on a regular basis. I've also added Vitamin D3 (2000 - 4000 IU depending on time of year) per the Embry protocol. I haven't eliminated glutens, as wheat products are just about in everything these days. However, I did have an allergy test to determine my sensitivity to glutens, dairy, etc. I think Embry recommends getting allergy tested to identify any possible allergens which could act as inflammation triggers. Luckilly I had none, but they are common. Bottom line is that Swank says to cut sat fats to less than 15 g per day and supplement with "good fats".

I think the Swank diet is a beneficial complementary therapy to MS, and certainly won't hurt your condition. However, you should definitely try and seek a diagnosis sooner rather than later, as you may want to consider some of the approved conventional treatments for MS if that is indeed the diagnosis.

Best wishes!

J

hi park! i'm 35 fem recently diagnosed and my 2cents are: eat right, now! don't wait for diagnosis, just look at where you can improve your diet and exercise and maybe you can head off further decline while the doctors dither.

i think i've read it elsewhere on this site but will restate that some elements of those diets are not necessarily for you - i would research why they make each claim, take all the general good ideas on, and then begin to figure out where my own sensitivities lie before i'd accept any restriction based on potential allergic reactions that would vary from person to person.

i'm sorta like brown - i do the Omega-3 with the flaxseed oil and 4000IU D3 (plus I now take a bajillion other supplements too) and i know (only from skin surface injection testing- whatever you call that) that i react mildly to oats but not wheat so that gluten bit's easy.

i'm also a bit like dahlia - was vegan but have now added fish and fish oils to be safe.

i think your most important supplements would be D3, and the omega fatty acids, and in my case b12 (methylcobalamin) is a biggie for neuroprotection because i was deficient. (i also take calcium to help absorb the b12 since i don't eat dairy and am not sure about my calcium intake from other sources - although i do eat non-dairy foods that contain calcium.)

since i started my huge supplement program in early feb06, i have noted improvements such as my lhermitte's sign associated with my cerival lesion disappearing, the numb shock reaction to pressing my spine next to my thoracic lesion is gone, the tiptoe part of my neuro exams is easy again, and some sensation has returned to my feet, although the rest of me is still numb (large fibre modalities only - i still can feel temp and pressure) and my hands still drive me crazy (they were the last thing to go, so far). i went from bedridden in early feb, to the point that i taught skiing 4 hours per day last week.

if you're interested i'll send you some info to read - i've been compiling ms-related nutrition abstracts ever since i recovered from my LP headache at the start of feb 06.

good luck!