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My "regimen"

Tell us what you are using to treat your MS-- and how you are doing.

My "regimen"

Postby Fayruz » Tue Oct 09, 2012 12:33 pm

First let me state that I do not promote anything, sell anything etc. I started this topic to have a place to write everything and maybe get some feedback. :-D

As I said before I got sick last November, prior to this I had no issues that I could relate to MS. No needles and pins, nothing at all.

Last July I got on a diet (for losing weight and to try al live more healthy), my diet excluded all sugar (except small amounts of honey and what of sugar is in fruit etc.), all simple OH (bread, pasta,...) and all alcohol. On this diet I was feeling great, had lots of energy, I was losing weight. Also I exercised every day for at least 30 minutes before breakfast and I had my dance lessons at least 2 days a week. So, till November I lost about 16 kg. Than I got sick and I gradually started to eat everything again (and by now got back some kg :evil: ).
So after all I read this is similar to paleo diet which is "recommended" for MS patients and still got sick :wink:

Soon after I was diagnosed I read an article (unfortunately it is not available in English) about a woman who "cured" her MS with chlorella algae and some tincture from wild garlic (I am not sure if this the correct translation). She went for a bioresonance which showed that she has a lot of heavy metals in her (dental fillings etc.) so she got rid of fillings and in the meantime she ate a lot of chlorella which is supposed to get rid of heavy metals in your body. After some time she started taking this tincture too and still lots of chlorella. She went for a MR in 2 years and there were no lesions left. She also started to avoid any diary products beacuse of residue from antibiotics etc. in them.
So this article got me thinking about my diet and all -all the "bad" things in our bodies store in fat and I was losing my fat quite quickly. Maybe I have released too much of stored things into my system too rapidly. So I started eating some chlorella, not as much as in article but about 7 -8 pills a day. I made sure that the algae is grown in glass barrels and not exposed to polluted air and other toxins. Chlorella has in it B vitamins so maybe that is way it helped her? I don't know.

I have a friend who also has an autoimmune disease - we had very similiar lifestyle and were also taking the same immuno-boost pills for years when we were feeling like coming down with a flu (they are natural pills from echinacea) so this got me thinking that we have somehow messed our immune system by boosting it too much or for too long? She doesn't take any immune system enhancers now since she got sick (almost 10 years ago) and she hadn't had a relapse - only 1 (the first). :-D
She is also going to some biohealer (I really don't know if this kind of therapy is known to you), of course that is alternative medicine. The healer chanels cosmic energy into you and by that boosts your ability for self - healing. I know...it sounds a bit weird. :-D So I decided to start this too and I think it helps, therapy lasts four days and on this days I have much more energy and I sleep well. Also my friends mother who has lupus got really better after being in a bad shape for a year and a half. She was using a crutch - but now doesn't need, she can move her toes and some of the fingers, etc. If I didn't see her before she started this therapy and now I wouldn't believe it...I don't know if it works because she belives it does or there is something else behind it but I am really glad for her. :-D

So now my supplements (I take them every few days or every day it depends on the feeling, I should study them more I know):

- evening primrose oil for Omega3 and 6 or linen oil in cottage cheese
- b- complex vitamins
- I also got some mineral water who has really a lot of magnesium so I drink that too, especially if some muscle twitches in my body ;)

I am thinking about zinc and selenium also but I am a bit sceptical of all these pills and would rather found good sources of them in food. Also I make almost all of my food from scratch and try to avoid processed food.

Since it's almost a year from my flare I would really like to do an MR to see what's going on, but since I am not on any medications my doctor will probably not refer me to one. Still I haven't decided if I should go on medications - she recommends Copaxone but...

I also have a question for you...how do you know if you have a flare or just a bit of a bad day. My GP said that if something new happens regarding symptoms and it lasts for more than 24 hours than that's it?

This is it for now, thank you for reading (if you got through it all) :-D have a nice day :smile:
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Re: My "regimen"

Postby Fayruz » Fri Nov 16, 2012 11:11 am

It's been now a year and a week since my flare and I am so happy to say that now I am almost almost completely symptom free. I don't know if this evening primrose oil is really helping but since I am taking it I feel better. Maybe it's just a natural course of the disease but I am still keeping it on the "menu". Because I still smoke (yeah I know...) I am thinking about adding more C vitamin. :)

Still thinking about Copaxone though and still not any closer to the decision about it. :S
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Re: My "regimen"

Postby jimmylegs » Mon Nov 19, 2012 9:52 am

hey there :) found a useful study re chlorella. it looks good for omega fatty acids and some minerals - i had thought it would be better overall in terms of magnesium, but it looks like only the isochrisis would be a reasonable source.

Biomass Nutrient Profiles of Three Microalgae: Spirulina platensis, Chlorella vulgaris, and Isochrisis galbana
http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract
full text! http://www.algaeart.biz/Spirulina%20bio ... rofile.pdf
ABSTRACT: Nutritional composition was determined for Spirulina platensis, Chlorella vulgaris, and Isochrisis galbana cultures. Data include the proximate composition, energy value, mineral elements, and fatty acid composition. Sixteen strains of these microalgae were obtained as a percentage of total fat. Total PUFA, SFA contents, n-3/n-6 ratios, and eicosapentaenoic acid (EPA)/docosahexaenoic acid (DHA) ratios were obtained. Protein content was high in Spirulina samples, whereas Isochrisis had the highest ash content. Spirulina is a rich source of γ-linolenic acid (GLA); Chlorella was an important source of PUFAs. Spirulina is a rich source of K, Chlorella is rich in P, and Isochrisis is a good source of Ca and Mg. Se content of Isochrisis is higher than in the other microalgae.

Table 3—SFA, MUFA, PUFA , total -3, total -6, and calculated results as percent of total lipid
Table 4—Mineral element content in 3 microalgae samples as mg/100g dry weight (mean ± S.D.)

fyi i suspect you mean to say 'flax oil' rather than linen oil. :)

zinc can be tough to do with food. bioavailability is better from animal sources rather than plant sources. steamed wild eastern oysters are highest, but heavy metal contamination in their habitat is of concern.
Oysters Can Take Heat And Heavy Metals, But Not Both
http://www.sciencedaily.com/releases/20 ... 174728.htm
i'd be especially cautious given that the heavy metal in question appears to be cadmium. cadmium toxicity causes zinc depletion because the molecules are so similar.

veal liver is the second most concentrated food source. then low fat roast beef. some good veg sources include wheat germ and pumpkin seeds.

arg, i just learned something. or i should say, i just finally absorbed something i have previously read about zinc supplements:

zinc
http://www.nlm.nih.gov/medlineplus/drug ... l/982.html
"Note that many zinc products also contain another metal called cadmium. This is because zinc and cadmium are chemically similar and often occur together in nature. Exposure to high levels of cadmium over a long time can lead to kidney failure. The concentration of cadmium in zinc-containing supplements can vary as much as 37-fold. Look for zinc-gluconate products. Zinc gluconate consistently contains the lowest cadmium levels."

i've typically looked at absorption info, and zinc picolinate comes up often. however, i have been buying zinc citrate most often over the years. will have to look for zinc gluconate for sure. note to self!!

as for selenium, oh if only i enjoyed brazil nuts! fortunately i do enjoy mushrooms, cod and salmon. halibut less often.

http://www.whfoods.com/genpage.php?dbid ... e=nutrient
"Excellent sources of selenium include button mushrooms, cod, shrimp, tuna, halibut, salmon, and mustard seeds.
In addition, Brazil nuts are one of the most concentrated food sources of selenium, featuring about 70-90 micrograms per nut. The reason that we do not include Brazil nuts in the chart that follows as well as in the food sources table at the bottom of this page is that they are not a featured food on our website."

when it comes to supplements i choose L-selenomethionine as a preferred source for bioavailability.

as a smoker, you may also want to read up on a variety of nutrients, in addition to vit C.

Serum concentrations of B-carotene, vitamins C and E, zinc and selenium are influenced by sex, age, diet, smoking status, alcohol consumption and corpulence in a general French adult population
http://www.nature.com/ejcn/journal/v59/ ... 2230a.html

afraid i can't comment on relapses. any new symptoms i have experienced since dx, turned out to be nutrient imbalances.

that's about it for me, glad you're feeling well!
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Re: My "regimen"

Postby Fayruz » Fri Nov 23, 2012 1:59 pm

Thank you for you feedback. :)
And yes of course I meant flax oil :D

I think that chlorella also contains a lot of vitamins from B complex, so maybe that's why it could be helpful? Have to say that since I drink that mineral water (very rich with magnesium) I also feel better, I don't get any twitching in the muscles. It is not very tasty ( I don't like carbonated drinks anyway) but it's ok.

For zinc I found some supplements that contain zinc gluconate so they will be the right choice :)

Thank you a lot for posting this site (whfoods) it's great!

Regarding selenium: my coworker has a lot of problems with her thyroid and she found out that the lack of selenium can cause problems. She also told me that the selenium is in whole wheat bread and that is not really wise to exclude that completely (I've done that last year for a few months).

That's it for today, hope you are well too. :)
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Re: My "regimen"

Postby Fayruz » Wed Jan 09, 2013 10:59 am

Yesterday I came across this abstract: http://www.ncbi.nlm.nih.gov/pubmed/67471

I was talking to my mother recently and she pointed out that my flare happened after I was fostering 4 kitties for about a month and that maybe it could be somehow connected. At first I dismissed it. But in mid November (a few days after I posted here) I fostered another cat (I sometimes help the local RSPCA) and after three weeks that this cat was living with me I experienced some symptoms - prior to this I had none. Still I didn't think it was related but now I've read this abstract and I'm starting to think...MS is supposed to be an autoimune disease and in my family we have quite a history of allergies (also an autoimune response). My mother was allergic to dust, my aunt to animal hair and now to pollen, my father and me to bees etc.
In this abstract there is a real small group of persons involved but I think it's interesting. My opinion is that the trigger for MS is not one but mayn and that the researchers will never find one thing in common in all.
So, for now I will not foster any more animals and I have to say I'm sad about that because I really enjoyed that and wanted to have a cat of my own.

Does anybody have any more information about this?

Thank you and I hope you have a nice day.
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Re: My "regimen"

Postby jimmylegs » Wed Jan 09, 2013 11:54 am

if immune system activation is part of the picture this association is plausible. bolstering the immune system to reduce sensitivity would be my approach. i have done this successfully for family members using nutrition. with respect to foods only, tests that used to come back positive for food sensitivity are now negative based on an intense therapeutic nutritional regimen. i strongly suspect sensitivity to animal allergens, and autoimmunity too for that matter, can also be mitigated with nutritional balancing of the immune system.
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Re: My "regimen"

Postby Fayruz » Sat Nov 30, 2013 1:05 pm

A few weeks ago it was my second anniversary of diagnosis...I know it may sound weird but I have decided to celebrate every year that goes by without new problems so on that date this year I made a dinner for my friends and had a nice evening and lots of laugh. :)

I am doing ok, some days I am still overwhelmed but I try not to think too much. But basically I think I have achieved some kind of balance which I try to maintain. When I overdo things I am quickly reminded that I need some "me time" because some vibrating in my legs start or something similar. I am also a great barometer, I always know when the air pressure is changing. :)

I had MRI in May and that was another good news - no new lesions and the existing ones are not active. (knocking that it lasts).

One question for you all...some days before I fall asleep I get this sensation like a jolt through the body, not like electricity but more similar to someone scaring me. Does this happen to any of you? I think this is MS related or maybe it happens because of lack of magnesium, because if I regularly add quite a lot of magnesium this happens rarely.

Hope everybody is doing well. :)
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Re: My "regimen"

Postby Fayruz » Sat Nov 30, 2013 3:12 pm

Well I decided to add some things... I am doing well but still sometimes when I think about it it scares me. I am 31 and everyone around me is having babies, getting married etc. I think that is hard to find the right man...and with this diagnosis even harder. I watched a documentary about MS and there were more sad story than happy ones, regarding partnership and I already have trust issues. So I am thinking that who will accept the diagnosis and stick with me through the life - knowing that it could take a turn for the worse. I know that in an instant everything changes - it could be a car crash etc. but this diagnosis makes this more real. I am more aware of things that could happen. I lead a good life, have friends, hobbies, good job...but I just don't date. I've read the topics on this forum written by husbands and wifes of patients with MS but I am still doubtful...maybe I just don't believe that anybody would stick with me and all this.
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Re: My "regimen"

Postby want2bike » Thu Dec 12, 2013 10:56 am

The most important vitamin for fighting disease is vitamin D. Most people are deficient in this vitamin. Need to get your level checked. If you fill you are full of toxins need to look at a detoxification program. Diet is important in fighting any disease.

http://www.youtube.com/watch?v=yhUuf2QZd_E

http://www.youtube.com/watch?v=qeg-5NDyJ84

http://orbisvitae.com/ubbthreads/ubbthr ... qn4kMKA3IU

http://www.dentalwellness4u.com/browse/guide.html
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Re: My "regimen"

Postby Kronk » Mon Dec 16, 2013 3:05 pm

Fayruz wrote:... I lead a good life, have friends, hobbies, good job...but I just don't date.


If your happy then why mess with a good thing. Even amazing lasting relationships can bring as much stress as happiness. Don’t worry about keeping up with the Jones, live your life for you. I was diagnosed a month after my second son was born and had tremendous guilt. Will I be able to raise my kids? Will I be able to contribute financially? Have I passed on my damaged genes? The diagnosis ended the plans my wife and had for a large family, more from me than her. Live for today, live for you, and if you’re happy today then what else matters.

The worst part of this illness is the fact it has taken away my positive future attitude. But it has been replaced with a sense of urgency and a focus on the NOW. Which is not a terrible thing...
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Re: My "regimen"

Postby amberfer » Thu Dec 19, 2013 8:45 pm

Fayruz wrote:
One question for you all...some days before I fall asleep I get this sensation like a jolt through the body, not like electricity but more similar to someone scaring me. Does this happen to any of you? I think this is MS related or maybe it happens because of lack of magnesium, because if I regularly add quite a lot of magnesium this happens rarely.

Hope everybody is doing well. :)


I have always gotten this too, since childhood (and I just got my dx last month) - and my husband gets it too (and he is disease-free), and I have talked to other healthy people who get this. So my theory is that it's normal, but of course that is not based on anything other than my experience!

Regarding your main post, without judgment of those who have had lesions disappear...of course this is based on what my neuro told me, but peoples' lesions can appear to be gone, but actually just not be visible on that particular MRI. People can also be symptom-free and believe they have been cured through a diet, but just experiencing a prolonged remission. Of course I am not a doctor; maybe some people have been cured with things like diet and supplements. I'm just wary, because disease modifying medications are proven to slow disease progress, and diet/supplements don't have as much research behind them. For me, I'd rather not take the risk of taking something that some people say might work, and instead take the risk of an FDA medication that has been proven to show progress of my disease. But I do know some people have a fear of traditional medicine - heck, my own family does! Each person will do what is best for him/herself based on the research he/she does, but of course everyone pursues different areas of research! ;)
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Re: My "regimen"

Postby want2bike » Wed Dec 25, 2013 10:19 am

Disease modifying medications only are proven to slow the disease if you believe the FDA, drug companies and your doctor. Have you thought about the drugs which the FDA has approved and then pulled them from the market because they were killing too many people? Have you ever wondered how a lawyer can tell you he can get you some money because you have destroyed your body taking a disease modifying drug? These drugs have been approved by the FDA so how can they be bad for you? The drugs may make you feel better but later on you may have to pay for destroying your immune system. There are studies showing these drugs do not work. It depends on the study you want to believe. If you believe your body can heal itself if you eat the proper foods then you can get better. If you believe the FDA, drug companies and the AMA you will take the drugs for the rest of your life and have MS. No, the drugs do not slow down MS.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&
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Re: My "regimen"

Postby amberfer » Thu Dec 26, 2013 12:01 am

want2bike wrote:Disease modifying medications only are proven to slow the disease if you believe the FDA, drug companies and your doctor. Have you thought about the drugs which the FDA has approved and then pulled them from the market because they were killing too many people? Have you ever wondered how a lawyer can tell you he can get you some money because you have destroyed your body taking a disease modifying drug? These drugs have been approved by the FDA so how can they be bad for you? The drugs may make you feel better but later on you may have to pay for destroying your immune system. There are studies showing these drugs do not work. It depends on the study you want to believe. If you believe your body can heal itself if you eat the proper foods then you can get better. If you believe the FDA, drug companies and the AMA you will take the drugs for the rest of your life and have MS. No, the drugs do not slow down MS.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&


It is true that everyone can choose which research and studies they want to believe! For me..I'm not going to risk more permanent nervous system damage and try to cure myself with some diet. The drugs have been proven to slow down the progress of MS...it is, of course, fine if you don't believe it...but it's not cool to tell other people that the drugs don't work, when they HAVE been proven to work. Just please be careful about how you are presenting your information.
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Re: My "regimen"

Postby jimmylegs » Thu Dec 26, 2013 6:15 am

actually at my last neuro appt. the doc said ms drugs do NOT slow progression, but they can potentially reduce the frequency of relapses.
apparently this finding is debatable:
http://www.webmd.com/multiple-sclerosis ... disability
would be interesting to look at study design for these conflicting pieces of research.

fayruz sorry I missed your earlier question re jerks while falling asleep. that used to happen to me ALL THE TIME going way back into my teens, but hasn't in ages now. I was certainly nutrient depleted throughout my teens (based on a variety of symptoms and medical dxs, combined with what I know in hindsight about athletic nutrient depletion) and I didn't make it better when I went more and more strictly vegetarian during my late teens and early 20s. I suspect your hypothesis re magnesium is plausible. may I ask how much magnesium (and in what form) you are adding when your falling-asleep-jolt symptom lessens?

and as for relationships. you may not want to let this thing beat you in your mind with negative possible futures... if you can adopt a kick butt attitude for dealing with ms, you'll more likely attract others who share that kind of mentality. I'm single myself and not working on changing that atm, but I would bet that you don't want to attract people that share a negative outlook on your future. keep the cat alive!! (and if that makes no sense, see joke 31: http://www.youtube.com/watch?v=Zrnd63DAH8o)
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Re: My "regimen"

Postby amberfer » Thu Dec 26, 2013 3:13 pm

jimmylegs wrote:actually at my last neuro appt. the doc said ms drugs do NOT slow progression, but they can potentially reduce the frequency of relapses.
apparently this finding is debatable:
http://www.webmd.com/multiple-sclerosis ... disability
would be interesting to look at study design for these conflicting pieces of research.


Indeed, very interesting!
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