Hi looking for some feedback if any of clean living? I am going to try this as my current medication is not working. I have received results today to advise I am JC positive and I really don’t want to put my body through more medication at the moment. I have been in this relapse since April and have only just starting to “feel like me again” I don’t want to loose that anytime soon. Any feedback would be grateful. Thanks.
My medication does not work, been thinking about alternative like you healthy diet, exercise and meditation. I have no experience in this if you have any tips what you would share with me, will be appreciate. Thank you
l agree with you - the side-effects of many of the prescribed meds are worse then the symptoms they are supposed to treat. l have been following the Biotin for Progressive MS facebook group- protocol since April - and l have been much better. lts a very high dose of the B7 -vitamin Biotin. l also take a B Complex capsule - plus Vitd3 - and magnesium and K2. And Thiamine which is B1.
As - we with MS - do not absorb enough of these vitamins - we need to take a much higher dose.
While I believe eating a decent diet is always a good idea for general health, I doubt it makes much difference to the course MS decides to take. Assuming you have stopped taking Tysabri (or intend to), I would seriously consider the strong possibility of experiencing the rebound effect, which can lead to rapid deterioration.
There is a wealth of information on the Barts Blog if you use the search facility, but this should get you started.
http://multiple-sclerosis-research.blogspot.com/2015/06/clinicspeak-did-we-need-trial-lasting-4.html
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I adhere to the Swank diet.
Its long term findings (over fifty years), whilst not compatible with strict scientific scrutiny, do at the very least suggest that following such a regime, holds long term benefits for those seeking to reduce / minimise the frequency of relapses and consequently, the progression of disability.
At the end of the day, why the hell not? If i end up chair or bed ridden, i can make up for all the tenderloin and blue cheese i am currently abstaining from.
In addition to this, i take B12 and D3 (in addition to Tecfidera). So far so good.
What is DMD ?
Hi my medication is not working either! I’m on tecfidera just now but going to come off that I’m jc positive so tasabari is off the cards for me.my mum got me a smoothie maker so lots of fruit and veg blends she’s following the wahls diet il be starting that soon. Plenty oily fish will update u when I get up to date with it lol
Completely agree. RRMS is one of life’s biggies, and playing nicely isn’t its style. Don’t expect it to pay much attention to whether you are getting your 5-a-day.
Alison
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DMD - disease-modifying drug. DMT - disease modifying treatment: different names for the same thing. These are the drugs that you hope will actually change the course of your MS for the better, rather than just take the edge off this or that symptom.
You might want to take a look at the info under the ‘What is MS?’ tab at the top of this page. It tells you all about it.
Alison
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Hi i’m on Tecfidera and take vit D, vit B1 and also vit B-Complex that includes B12. I meditate twice a day and do light gentle yoga for 10 mins before the meditation. I do think a healthy diet is important as it seems some MSers may not absorb vitamins and minerals very well from our food. This may be to do with the gut walls perhaps.
There was a new post on the Barts MS Blog about yoga yesterday. Conclusions include it could decrease some MS symptoms.
http://multiple-sclerosis-research.blogspot.com/2015/08/yoga-is-form-of-exercise-that-is-good.html
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Hi, I’ve eaten a healthy diet for years, I used to walk the dog for miles & swim regularly. Things started getting more & more difficult 12 months ago, due to the MS. I am injecting Copaxone & have been since my DX in 2005. I am now stopping the Copaxone due to things moving on. In answer to OP, I believe, even though I eat healthy, exercised regularly, without the DMD, I would not have been able to have had the ability to have been so active for so long. So basically, I would definitely not rely on just a healthy lifestyle to keep MS under control. DMDs are expensive to the NHS, so when they are recommended, its for a good reason. I’m glad I was prescribed them, they have done their job! I agree with Val, MS will do what the hell it likes, regardless Tracey x
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I think that sometimes we get so fed up with having rather active RRMS and all that entails (like DMDs, for instance, not to mention the rest) that we long for a return to some beautiful pre-Fall paradise-state in which we don’t have MS and everything makes sense and we get to steer our own ship through life instead of being jerked about by a mindless disease process that has muscled in uninvited.
It is an attractive notion and a very human one, but it’s risky.
Alison
Now getting picture after 7 years what really is Ms, I believe without DMD it’s could be much worst. I did exercise, eat fairly healthy not all the time … but tried to mostly. It was quite ok with my Ms till now I having relapse now quite bad like I had 7 years ago I did get steroids due to starting lemtrada . So I really pushing my self exercise and resting and trying all things I read here. I believe with all you wise advises and posts here about healthy diet and tips I will beat this horrible relapse . Thank you
My protocol:
healthy diet
copaxone
vedic meditation twice daily
i could come off the copaxone if I wish but I want to fight this from every angle
xx
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Totally agree with Wammel. If you’re on Ty please take heed of the rebound effect.
Thanks for all the comments. I’m not on tysabri was hoping to but as I am JC positive that’s changed for me the next one is fongolamod not very keen on the side affects at all I already have problems with my eyes. I just want to have a wee break from the medication. I was on tecfidera which was not doing its job I’ve been in the relapse I’m in for four months I don’t really fancy going downhill so soon after finally coming to the end hopefully, since I have stopped the tecfidera I’m a lot better also. I understand I will need medication again but right now I want to be the person I haven’t been well enough to be.
I’m jc positive as well was hoping for tysabri but my next step gonna be lemtrada . I have massive hopes in this drug.
Not heard of that one have my nurse 25th so will definitely be asking if there is any possible other meds for me
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Is anyone currently on the Wahls diet ? would appreciate feedback
I tried the Wahl’s protocol for a month - it gave me terrible cystitis (too much acid from all that fruit?). I was also on the best odds diet for years. I now think they are both scams. Why should diet change whether your immune system attacks your myelin. I’m pinning my hopes on the drugs. Getting exercise is also important - harder for people to make money from that so there is no Wahls or Swank or best odds exercise protocol.
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