This Is MS Multiple Sclerosis Knowledge & Support Community

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Yes I have been tested for lyme through IGEnex--I test positive according to IGENX with 2 lyme bands--but not according to CDC criteria. As you peel back the onion I test positive for alot of stuff- hplyori, parasties, ebv, etc. So is it lyme or am I on the autoimmune /non functioning immune system spectrum? If it weren't for the fact that lyme treatments -first herbs and then just a couple of drugs throw me into horrific neuro attacks/signifcantly advancing the disease I'd be on the antibiotic path. I also have MCS-am chemically sensitive. My reaction was more than the herx reaction as the first attack lasted 4 months after stopping treatment and the second attack10 months.. I think I'm still in it-with signficant neuro damage. I also find difficulty finding success stories out there for neuro lyme- they are few and far between from what I can tell. Then again, some with MS seem to get better with abx. I don't believe it is just lyme disease at play. Maybe I'll jump into antibiotics/antimalarials but now that I am able to function again somewhat after a year of hell--I'm pretty afraid of that path--I've been working with a naturopath and a homeopath the past year to help me come out hell and reverse disease and also debating on the various extreme diet options. I don't think my body can handle the intense pharmecutical drug approach risking damage to organs and I'm not sure I believe that is the answer to long term health.

It is confusing how people claim to heal and reverse there illness on 2 very diffferent type of diets. Yes -Jimmlegs it is confusing to me that you contracted MS after reading so many great stories on vegan and even raw
diets.

We so little about the immune system and autoimmune disease.

If anyone knows of healing stories with neuro lyme after treatment- let me know!

I have been intrigued by Terry Wahls and the implication of mitochondria. I myself have tried many of the standard MS meds while simultaneously addressing Swank, lifestyle, and so on. I swore to never use anything that was outright immunosuppressive, such as solumedrol or chemo or tysabri, although I was a little unsure about how my IVIg fit into all of it -- it isn't suppressive; it is actually immuno-boosting, but it does interact with the immune system in ways that are not completely clear.

I have thought about Terry Wahls and electrostimulation and the idea that many people with MS suffer from deconditioning as a cumulative problem with MS issues. Waking up the connection between muscle and brain sounds like a good idea no matter what!

Does she in fact have a mitochondrial disorder? Do many people diagnosed with MS have mitochondrial disorders?

Many of us do *not* have the option of making the management of our multiple sclerosis a full-time job.

I don't know that I have a particular point here -- just thinking in print.

By the way, you can combine adult beverages and just have a lovely Irish coffee.

Hi Selma,

This is such a difficult issue, diet and healing because there is so much that seems like contradicting information. But I believe in healing, not curing, which can cross each other's paths, but not always.

I do think there are some essentials. I still have symptoms and I have the 'cleanest' diet I know of and never feel like I am missing out on anything. I do not and have never taken any of the MS drugs. I am living with MS eleven years now.

On the other hand, I feel the relationship between health and disease is a mystery and very personal and that we have to just keep trying what we can to figure out what is best for ourselves.

I am not a vegan or vegetarian. I absolutely need a high protein diet so I eat fish, mercury free, never farmed, but the small fish, like sardines (in water) with salad etc, or low fat meat, like chicken breast.I eat very little saturated fat and do think this has helped me a lot.
I have gone around and around with grains. I feel certain that gluten grains are not necessary with so many alternative whole grains without gluten out there that are so much better for digestion, which I feel is key to good health. Not to mention the allergy aspect of gluten grains, which manifest in fatigue and a plethora of other symptoms not generally recognized (similar to the symptoms of sugar consumption).
So although I do not eat grain often, I do eat it when I feel it is time to eat it.

I avoid all sugar, including honey, and maple syrup and ALCOHOL. I use stevia to sweeten everything. I do eat a piece of organic fruit once a day in order to avoid blood sugar levels rising and dropping too much.
I feel strongly that drinking alcohol with any kind of imbalances in the body, which is what illness is, whether it is diagnosed or not, is asking for trouble. It is simply not needed.

And of course, supplements.

I know this is a strong set of opinions, but I don't care, I just hope something I have said is helpful to you.
I hope you feel better and can figure this out. It is a process, I think, and there is no right answer.

I am not a doctor, just my own. The thing I cannot do for myself is the Liberation! which I hope happens soon.

Good luck!
By the way, both Jimmylegs and Mark W are really right on with supplementation info!! Thanks to both of you!

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lyon what is a 7 -7 !?

thumbs up zina i like your comments re balancing and healing, i just used that myself in a post yesterday

JL,

My mother use to drink a 7/7. Her's was 7-up and Seagrams 7. She wasn't much of a drinker, so her's was mostly 7-up.

I don't know if that's the same as Lyon's drink.

lol thx may

I forgo to mention that I did get tested for CCSVI via doppler? (non invasive technique on neck), I tested positive according to zamboni criteria. But since still in limbo land with diagnosis and from what I read it sounds like CCSVI improvment lasts for most/veins close again-I'm not quite ready to jump into that quite yet.

I've also eaten pretty well my entire life-farm food when young (although surrounded by pesticide/herbicide leaden corn fields. Always cooked/never been into processed food and eaten mostly all organic the past 19 years and local/very/very pure the past 13 years and still progressed to neuro symptoms.

I was also in a high stress sales type of job.....been on unpaid LOA for a year (disability rejected). I can't see going back right now based on how I feel right now. Focused on healing. Thanks for everyone's feedback!

zinamaria thanks for your long post! What does a typical day's diet look for you. Do you eat red meat or eggs or dairy or legumes? Have you had progression under your diet?

i eat all those things lol

sel, did you get a chance to check out the aforementioned long blurb under general discussion?

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I read the discussion thread in the general discussion. Thank you for the info. I always value your posts. BTW I tested at low end of normal for zinc and my naturopath put me on 50 mg/zinc /day--- after being on it all winter it has not gone up much. Ditto for B12/ and b12 shots. Also per the lyme doc advice and naturopath and also in line with wahls supplements I'm on ALA 600 mg, fish oil 2000 mg, flax oil, iron (low ferritin my entire life), brocolli seed extract, DIM liver phase I/II support, acetyl l carnitine 500 mg, magnesium 600mg, malic acid, vitamin D 8000 IU /day (value raised from 45 to 90 over the winter on that dose), K2, probiotic, not consistent on multivitamin but was on it for many years and most of last year, coq10 100 mg--I think that is it. I stopped the weekly b12 shots after 6 months/did not notice improvement in neuropathy. I put spirulina in my smoothies. Started chlorella tablets. My husband installed a filter on our sink since our well tests above the guideline for arsenic-naturally occurring in New England. I guess I should have installed the filter 25 years ago! Not sure if that would have made a difference.

I need to ask my naturopath if there is away to overal test for many vitamin deficiences at once versus one at at time. i.e b12, iron, mg, zinc -i think that is what I've been tested for so far.

I've read alot on molybendum (spelling?)-- steven cooter's healing chronic illness book recommends that to detox candida toxins. I've been on several candida diets over the years but not tried this in conjunction. Since I also have MCS (chemically sensitive), I've read it is also good for that. So thinking of adding that to my current wahl's regiment which is a candida diet. I use no sweetners of any kind, but do have some fruit in my smoothies.

I've done loads of supplements and herbs during the early days of fibro symptoms, even grew my own herbs. I question if all the supplements and herbs are really doing anything! But since these are different supplements than I've taken in the past, I'm giving it a go. Good for mitochondria and phase I/II liver detox issues (which wahl's diet is also good for being high cruciferous and sulfur veggies. Tests also show I don't detox well have phase I/II issues according to the tests the naturopath ran. Can't remember the lab she used at the moment. This is the same path CFS /Fibro/autism folks go down. I think CFS/Fibro/autism/MS/autoimmune disease are all manifestations of similar problem/disease. We are the canaries in the coal mine.

Oh boy, there is no short answer here Selma but I am happy to answer your questions if you can hang in there with the length of the reply!! (Jimmy, thanks for the reinforcement of thumbs up...I try.)

Selma asked: "zinamaria thanks for your long post! What does a typical day's diet look for you. Do you eat red meat or eggs or dairy or legumes? Have you had progression under your diet?"

First off, I am not so active right now. Once I start painting again (have not for a few months due to moving) I will be expending more energy so my hunger will increase. I do not have a 'job' other than maintaining the house, and painting. So at this time:

When I rise I usually drink water. One usually gets dehydrated as one sleeps. I like protein first thing in the morning for it gives me long lasting energy, unlike simple or complex carbs, like fruit of bread or cereal ( I never eat cereal because of all the added junk).
Right now it's a power smoothie with whey protein powder, a little coconut flour, frozen berries (berries are very low sugar so I do not count them as sugar) gr. flax, vit c, whatever I can throw in there to make it thicker. Sometimes I use hemp seed and water or hemp milk for liquid.

I have no soy or corn in my diet.

I've been known to eat a piece of salmon or chicken breast for breakfast, but always with veggies to aid digestion. If I don't feel like cooking, it's the smoothie. Sometimes an egg or two, but only one yolk as I try to avoid saturated fat.
So any one of the above starts out my day with a bang.

I do not eat any dairy. I just do not miss it, not even cheese (and I lived in Italy for three years!!), plus I once had a uterine fibroid and the nurse practitioner told me if to cut back on dairy (I was eating a lot of cheese at that time, this was before MS) and lo and behold, the fibroid shrunk. That told me what I needed to know. I used to make my own fermented cheese and I do miss that. But not enough to eat it again.

I ferment my own veggies, right now getting geared up to make kraut and other fermented vegetables. They are very good for you, but store bought kraut is usually cooked (cancels out the whole idea) and has other stuff that take away all the best properties. If anyone wants simple and easy instruction on how to make it, let me know, you do not have to use cabbage if you don't like cabbage!
There is also a great book called 'Wild Fermentation' by Sandor Katz, who is a master fermenter. He is online too.

I use apple cider vinegar, unpasteurized and unfiltered (Braggs is the best) for all salads and also just a little shot of it sometimes to keep things in the gut clean. Plus I love the taste!

I do not eat legumes. The 'bean' is a protein and a carb in one food and makes digestion very difficult. I bloat and I hate that feeling. I do not miss them. I used to love lentils, but do not eat them either, and again, I don't miss anything that made me feel less than really good.
I mentioned this on another post but I food combine, which means I do not eat carbs and protein together, if and when I eat grain. Always with vegetables, but not with protein. I never say never, because I have cheated, like when making risotto, but then I always regret it, so that is a rarity, a temporary amnesia.

I do eat nuts, mostly almonds and sunflower seeds, that have been soaked over night, rinsed well then roasted (the soaking for better digestion, the same with grain, even rice; and I spice the sun seeds with tumeric, curry powder, garlic powder, salt, and even a little cayenne before I roast them). I snack on these throughout the afternoon, for I do not get hungry again about 3 or 4pm. Even when I rise early (but again, I am not exerting much physical energy these days).
Selma. I recommend nuts to put and keep on weight if this is an issue. Or a few teaspoons of organic extra virgin olive oil to drink or glob onto you salad and grains. I keep walnuts and pistachios to a minimum because of the fat content. But this might suit you.

For dinner, which is early and my one large meal (I love to snack and this is a much better way for me to eat than large meals, but everyone is different). I have a piece of meat, usually chicken. If I do eat red meat it is very lean meat, like Buffalo, or grass fed beef that says it is 96% lean. Always lots of veggies.

I drink a lot of water and tea throughout the day. I make my own soda by taking freshly chopped ginger, boiling it then letting it cool. I then mix it with sparkling water and add a touch of lemon and stevia, and/or add another tea I have made that is in the fridge to sparkling water. Really refreshing when it's hot out or when thirsty. I drink a lot of herbal teas. NO caffeine for me, makes me way too hyper. I already have an abundance of energy. But that energy is because I don't drink caffeine, for it saps the adrenals and creates a 'false' sense of energy.

Sometimes I do have another small smoothie in the evening. I try to keep it varied to keep myself happy and creative.

On progression: All of what I have described above has been a process of refinement, of trial and error. I am sure there is more to learn. I have never really been into labels, even the MS label. But in the winter of '09 I had my one and only 'mother of all relapses' as someone I know coined it. I was down for a long time. I attributed the relapse to stupidity, to the use of paint solvents, turpentine without proper ventilation. I would never say I asked for a setback, but there was a bit of denial about whether I had this illness because I was doing so well for those ten years, with very minor symptoms. I was diagnosed as RR and never went to the neuro again and just lived life as best as I could. But then the relapse. That was tough. At that time I did see a neuro, his name was Dr. Fabrizio Salvi, of the famous team, because I was living in Italy at that time. Unfortunately for me, they had just been shut down by the Italian government and could not perform Liberation on me. Salvi put me on a five day IV cortisone drip, and it halted the attack which had been ongoing for almost two months. I had and have not since done any drugs. But Salvi was so right to put me on them. He is a brilliant, compassionate man and doctor.
So, now after a year, doing everything I know to recover from that, including trying to get back a yoga practice (I had to stop for a year due to weakness) listening to affirmation tapes, trying to stay stress free etc, I am much stronger than when I had the relapse, to be sure. But I am not where I was prior to the relapse.
I did see Salvi before we moved back to the states in the fall of 2010 and he said I was not progressive, that I was still RR.

Truly, between you and me and a molehill, I have never put much into labels.
I do believe in the power of belief AND if that includes the often powerful effect of placebo, so be it. But my changes are very real. If I saw a video of what life was like during the relapse I think I would cry all over again.
I was in bed many months, did not paint for a year, and could hardly make eye contact for all the energy it took to do that.
Now, I feel great and the only thing still lingering is weakness in my legs, which I am trying to cajole into being strong again (I used to run marathons, and I do believe that cells have memory. NOT that I will run a marathon again, but I use the same mental tapes I used when I needed to fun for four hrs without quitting).
I so have that inexplicable fatigue, so I rest.

I feel healthier now than before my diagnosis, notwithstanding the symptoms I live with. Even Salvi was quite impressed by my recovery and I attribute this to diet and lifestyle (no more painting with solvents! I have reinvented how to paint with oils without paint thinner!)

MS changed my life and I do not mind trying to reinvent how to live life with these struggles. It is another creative project.

Now that I have written a 'tome' and said more than you asked me, I will quit. Thank you for giving me the opportunity to share with you what I have learned.