Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hey all, thank you for your advice. I appreciate having a group of actual experts to turn to for questions.
I spend so much time researching treatments for ms, I read about the miracle diets and the success stories from those who cured themselves through a low fat diet, or by swallowing powdered crystals to improve different chackras (sorry mispelled word), the nd who recommend a million vitamins and supplements, no dairy, no beef. md's and neurologists who recommend interferon or compaxone and tell me that I can eat what I want. There is even a clinic in Toronto where they look at your iris's and tell you exactly what kind of diet and which supplements will cure you, but they say you have to believe in it in order for it to work.
And then there's the Zamboni treatment from Italy, where they widen your veins to improve blood flow.
My father is convinced that meditation is the answer.
I read and listen and I think that there is merit to any treatment twhich improves overall health, but as I told my father, if emotions are the cause of ms, how do you explain the many perfectly stable and happy people who have it? And to the diet people I say, If low fat diets cure ms, then how do you explain athletes and people like me who are in good shape and have always eaten well who have it? If widening the veins is the answer, than how do you explain my friend who just had that treatment and is worsening?
I know that everyone is mystified by this disease. But I am frustrated by the barrage of contradictory advice and answers.
I don't know why I wrote this. I just wondered what your various opinions were on this.
As far as I am concerned, we are the only real experts. That's why I ask you.
I spend so much time researching treatments for ms, I read about the miracle diets and the success stories from those who cured themselves through a low fat diet, or by swallowing powdered crystals to improve different chackras (sorry mispelled word), the nd who recommend a million vitamins and supplements, no dairy, no beef. md's and neurologists who recommend interferon or compaxone and tell me that I can eat what I want. There is even a clinic in Toronto where they look at your iris's and tell you exactly what kind of diet and which supplements will cure you, but they say you have to believe in it in order for it to work.
And then there's the Zamboni treatment from Italy, where they widen your veins to improve blood flow.
My father is convinced that meditation is the answer.
I read and listen and I think that there is merit to any treatment twhich improves overall health, but as I told my father, if emotions are the cause of ms, how do you explain the many perfectly stable and happy people who have it? And to the diet people I say, If low fat diets cure ms, then how do you explain athletes and people like me who are in good shape and have always eaten well who have it? If widening the veins is the answer, than how do you explain my friend who just had that treatment and is worsening?
I know that everyone is mystified by this disease. But I am frustrated by the barrage of contradictory advice and answers.
I don't know why I wrote this. I just wondered what your various opinions were on this.
As far as I am concerned, we are the only real experts. That's why I ask you.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
And yes anyone who lives w/ a chronic condition is an exper. Don't use the word expert on another forum for MS...believe me. I did and got slammed.
MS is unique for each of us. Coming to a group of people who have been there, done that..is nice.
Many vegetarians end up with MS. In fact, the country with the most vegetarians in the world(India) has Autoimmune Disease rates on par with Western nations. So what is a healthy diet? And what are the vegetarians lacking that could perhaps connect their diet to an athlete also developing MS or another Autoimmune disease? And to take it a step farther, what is it about a vegetarian diet and an athletes expending energy that could lead to problems with the vascular system.
First, what a vegetarian diet lacks is B12 in a form that the body was designed to use.
B12 is only bound to protein. It is essential for every cell in the human body.
Second, anytime your body is under stress of any kind-- this would include strenuous exercise-- you rapidly deplete B12 and enzymes. That is why people take B12 shots for energy. B12 is necessary to produce the energy required for exercise. As are enzymes.
Third-- If you lack B12, you cannot recycle homocysteine. Homocysteine is a potent blood and nerve vessel toxin that has been scientifically proven to narrow the blood vessels.
If you check out the discussion under the thread "A New Theory" there are many more connections made. The lack of Pancreatic Proteases explains each and every symptom of MS and is based on scientific fact. If you would like to test it out, just name a symptom and it can be connected directly back.
One final note-- Many studies have shown that MS patients are unable to metabolize B12. Again --the truth is provable.
The different diets go to how your GI is processing food. If, as time passes, some people have less lactase (-ase is an enzyme) then they can not digest the milk protein and the fermentation can negatively impact gut bacteria.
What can bacteria do?
1.) Good gut bacteria can protect the gut mucosa which down regulate pro-inflammatory cytokines that lead to inflammation
(aka REDUCE inflammation). Inflammation is factor in MS
2.) Down regulate the immune response in MS. Obviously immune process is part of MS.
3.) Kill bad bacteria that would increase both of the above and reduce the below
4.) Good gut bacteria produce digestive enzymes ie Sfericase, Serratiopeptidase, etc (again -ase is type of enzyme). These enzymes help break up food so you can absorb more nutrients.
5.) Certain good bacteria themselves breakdown food so you can absorb more nutrients even the ones that do not produce enzymes.
6.) good gut bacteria make vitamins K and B vitamins
7.) some convert primary bile to secondary bile helping you to get healthy fats into your body (brain is about 60% healthy fat). Other bacteria produce fatty acids themselves that help colon health.
Again bad bacteria can kill good bacteria and their positive affects. If you are not producing enough enzymes from your body or from bacteria then this food rots in your gut. The fermentation and increase bad bacteria can kill good bacteria and their good affects.
Examples: If you have Celiac's disease (wheat allergy), not making enough lactase enzyme to break apart milk this can happen. It does not help that most red meat you buy has nitrides that are ADDED to which increases pancreatic cancer drastically, etc This can all lead to less nutrition being absorbed into the body, increase in inflammation and immune reaction.
As you age you produce less hormones and enzymes. In your late 20's this decrease starts and most people with MS are dx in 30-late 40s. If you ALREADY have low hormones/enzymes or cell receptors then you start tissue degradation for whatever nutrients you don't get.
You can't make cake without enough flour and you can't make myelin without good fat, little protein, B vitamins, minerals and amino acids. If you lack any one ..well you are only as strong as your weakest link. If you do not have the proper input then output proteins will be different..maybe different enough for them not to be recognized by the body and attacked.
At least this is my hypothesis on the topic. Sorry for your frustration, we all want answers.
Best wishes to you,
EP
But you're right, there are a million ideas, a million theories, and no definate answer. I honestly believe that believing that what you're doing is helping helps more than the treatment itself. So I do my swank diet, and I believe it helps. And I believe that believing that helps. Am I cured? No. But after starting the diet I had 3 great years even with bad reactions to copaxone, betaseron and tysabri. The last few months haven't been so good.. But hey, what the heck, I can't expect miracles!
We are all different. Find what works for you. :-)