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So my DH was diagnosed with MS....


SereneHome
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Another thought-

if your dh  is having rapid deterioration and demyelination and there are currently reasonably safe pharmaceuticals that can halt that quickly,  if it were me, I might go for that (after checking on risks, side effects etc)

afaik there aren’t any pharmaceuticals that can rebuild the myelin, that has to be via dietary, supplements, etc route.     Or nowadays perhaps also via stem cell therapy

but I think that rebuilt myelin is supposed to be not equal to original myelin, so putting a quick stop to further destruction if there’s a drug that can reliably do that could maybe help     Not only with current symptoms and to stop downhill progress, but also to have less damage to have to reverse

the trigger elimination diets plus cleaning up physical environment will also stop the destruction—and long term I think that’s far better than stopping destruction by shutting down the immune system with a pharmaceutical.  But the trigger elimination methods may not be quick especially if his triggers are beyond the dozen or so common food and environmental triggers  (also if there are things in home like toxic molds that’s very important to deal with for whole family, but can be slow).  

I’d liken it to my melanoma where I started with the standard conventional surgery of that era to remove it—and then added  alternative approaches to help with more general healing and to help stop possible rogue melanoma cells from proliferation and to try to keep my huge numbers of atypical or dysplastic nevae from turning deadly malignant.  

 

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On 10/21/2019 at 11:50 AM, Pen said:

Another thought-

if your dh  is having rapid deterioration and demyelination and there are currently reasonably safe pharmaceuticals that can halt that quickly,  if it were me, I might go for that (after checking on risks, side effects etc)

afaik there aren’t any pharmaceuticals that can rebuild the myelin, that has to be via dietary, supplements, etc route.     Or nowadays perhaps also via stem cell therapy

but I think that rebuilt myelin is supposed to be not equal to original myelin, so putting a quick stop to further destruction if there’s a drug that can reliably do that could maybe help     Not only with current symptoms and to stop downhill progress, but also to have less damage to have to reverse

the trigger elimination diets plus cleaning up physical environment will also stop the destruction—and long term I think that’s far better than stopping destruction by shutting down the immune system with a pharmaceutical.  But the trigger elimination methods may not be quick especially if his triggers are beyond the dozen or so common food and environmental triggers  (also if there are things in home like toxic molds that’s very important to deal with for whole family, but can be slow).  

I’d liken it to my melanoma where I started with the standard conventional surgery of that era to remove it—and then added  alternative approaches to help with more general healing and to help stop possible rogue melanoma cells from proliferation and to try to keep my huge numbers of atypical or dysplastic nevae from turning deadly malignant.  

 

 

It looks like there might be some better drugs soon. The following rapamycin study was done on humans and the sobetirome will possibly be going to human trials in 1-3 years.

Rapamycin but only used on relapsing-remitting MS: 

https://www.sciencedirect.com/science/article/abs/pii/S2211034818302761

Sobetirome looks promising for both relapsing remitting MS AND hopefully primary MS:

https://www.sciencedaily.com/releases/2019/04/190418141614.htm

https://www.bizjournals.com/portland/news/2019/04/18/ohsu-study-offers-hope-for-people-with-multiple.html

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  • 2 weeks later...

@Pen  @Spy Car  and anyone else who might know..

I was recently suggested a particular supplement that might help with MS by actually regenerating damaged cells.  I emailed neuro dr and she said that there is no research on it and my husband shouldn't take it with his medication. But I am not sure how well versed she is on alternative medicine, so....

Since I am terrible at any kind of science research - how do I find out if this supplement is not good to use with his MS injection drugs?

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31 minutes ago, SereneHome said:

@Pen  @Spy Car  and anyone else who might know..

I was recently suggested a particular supplement that might help with MS by actually regenerating damaged cells.  I emailed neuro dr and she said that there is no research on it and my husband shouldn't take it with his medication. But I am not sure how well versed she is on alternative medicine, so....

Since I am terrible at any kind of science research - how do I find out if this supplement is not good to use with his MS injection drugs?

 

Do you know what it is?  (Name of supplement?) 

 

Ketogenic diet is supposed to be a natural way to induce more stem cell type regeneration and thus is supposed to help some people with remyelinating — plus helpful if it gives good healthy fats to be building blocks.  (Not helpful if just a high fat unhealthy processed food diet though).   Apparently for this purpose it is most helpful in cycles of on and off keto .   Which has a name, but I forgot it.  

In Japan they apparently hugely increase methylcobalamin for anything neurological.  I’ve been told. 

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For research I often use 

A Scholargoogle Search which gets more research information than a regular search

I sometimes go straight to Searches on some sites like Pubmed which gives at least abstracts of articles on lots of subjects for free.  

 

I search anything I am considering taking to see what’s known about it related to other problems I personally have. 

I also would put the name of supplement in a regular search with words like “dangers” “risks” “adverse effects”    (I’d do that for the pharmaceutical too).   And then put the two together in a search (on both regular and scholar  google because I want anecdotal experiences as well as studies).

If some words are super common I try to leave them out— like say the supplement were Reishi mushroom    :   I’d probably only use Reishi because mushroom would bring up too much irrelevant info.       OTOH if it were something like SAMe / S-adenosyl L methionine    I’d use both ways of referring to it in 2 different searches.  Studies would likely use both terms, but anecdotal experience might not. 

 

 

 

Then if not seeing a lot of harm I might do the reverse and look for “benefits” etc.

 

plus there are some sites I like a lot when looking at supplements...

“lifehack” or some name like that) tends to have good info with links to articles 

life extension” tends to be promoting their own products - nonetheless lots of useful information 

Lots of people on WTM are antiMercola but It gave found Mercola sometimes has useful articles

nootropics  and a bodybuilding website I found are sometimes useful if they’ve reviewed something

 

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1 hour ago, Pen said:

 

Do you know what it is?  (Name of supplement?) 

 

Ketogenic diet is supposed to be a natural way to induce more stem cell type regeneration and thus is supposed to help some people with remyelinating — plus helpful if it gives good healthy fats to be building blocks.  (Not helpful if just a high fat unhealthy processed food diet though).   Apparently for this purpose it is most helpful in cycles of on and off keto .   Which has a name, but I forgot it.  

In Japan they apparently hugely increase methylcobalamin for anything neurological.  I’ve been told. 

Yes, it's Lion's Mane - mushroom tincture

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And it’s considered an edible food mushroom, so other than personal allergy or ilif told to avoid mushrooms generally I’d not personally feel worried about giving it a try.  Reading the study abstract, I think I’ll get some LM as mushroom and add to stir fries!

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On 10/16/2019 at 11:34 AM, Ranger said:

Terry Wahls is a doctor with MS who shares her story in The Wahls Protocol and I think it is very helpful. 

I don't have MS -- something different -- but the Wahs Protocol has been hands down the best thing I've done. I'm so glad I found it.

My heart goes out to you both. Understand that you need time to adjust, deal w/ the stages of grief (denial, bargaining, anger, depression, finally a certain type of acceptance).

I have a friend who's high powered, super active husband was diagnosed w/ it about eight years ago. Albeit they don't have kids, but man, he's super proactive in going outside of the box to deal w/ his MS. (His latest love: he bought NormaTec devices for his leg thinking they help).

Also, what state are you in?

Hang in there -- MS is do-able. (And you're not alone, we're all here).

Alley

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4 hours ago, Alicia64 said:

I don't have MS -- something different -- but the Wahs Protocol has been hands down the best thing I've done. I'm so glad I found it.

My heart goes out to you both. Understand that you need time to adjust, deal w/ the stages of grief (denial, bargaining, anger, depression, finally a certain type of acceptance).

I have a friend who's high powered, super active husband was diagnosed w/ it about eight years ago. Albeit they don't have kids, but man, he's super proactive in going outside of the box to deal w/ his MS. (His latest love: he bought NormaTec devices for his leg thinking they help).

Also, what state are you in?

Hang in there -- MS is do-able. (And you're not alone, we're all here).

Alley

I read about Wahl Protocol - I'll be honest, I can not imagine my husband or any of us following that type of diet.  I wish we could, but it seems so so very restrictive.

I am in New England

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1 hour ago, SereneHome said:

I read about Wahl Protocol - I'll be honest, I can not imagine my husband or any of us following that type of diet.  I wish we could, but it seems so so very restrictive.

I am in New England

 

You might consider trying Wahls or another similar nutrition program (such as the one I mentioned or Spycar did ) while your shoes (eta, hung, autocorrect problem I think for DH)  is probably not too far gone.  

Maybe not heading into the big food centered holidays, but perhaps for 30 days starting in January.    If your husband or other family felt much better with it, you might reconsider what you would be willing to do.  

There’s much less proof that these diets will work for everyone with an autoimmune condition  than, say, gluten-free for celiac. And there are some variations where one or another seems to be better for different people with AI.  

Still. There are lots of people who are hugely helped by them.  

Getting away from what may be causing the ai that causes demyelination in the first place can be much more significant than what drugs or supplements can do to try to cope with ongoing increasing damage.

gently: It’s probably too much to take in right now.  

I get that.

Alas, alack, IMO if  food is a part of the complex of causes  behind his MS, a refusal to give up the food culprits is sort of as self sabotaging as an alcoholic refusing to give up alcohol.  Trying to add pharmaceuticals and supplements to limit or reverse the alcohol damage might help, but are likely to help more if the alcohol is given up.   I’d strongly suggest a 30 day minimum trial.  

60 days trial would be even better at least for some foods because of how long they can affect the body and to get past withdrawal symptoms.  But I expect 60 would seem like way too much right now.  And I realize that Thanksgiving and Christmas type season  is a hard time to start.  

 

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2 hours ago, Pen said:

 

You might consider trying Wahls or another similar nutrition program (such as the one I mentioned or Spycar did ) while your shoes (eta, hung, autocorrect problem I think for DH)  is probably not too far gone.  

Maybe not heading into the big food centered holidays, but perhaps for 30 days starting in January.    If your husband or other family felt much better with it, you might reconsider what you would be willing to do.  

There’s much less proof that these diets will work for everyone with an autoimmune condition  than, say, gluten-free for celiac. And there are some variations where one or another seems to be better for different people with AI.  

Still. There are lots of people who are hugely helped by them.  

Getting away from what may be causing the ai that causes demyelination in the first place can be much more significant than what drugs or supplements can do to try to cope with ongoing increasing damage.

gently: It’s probably too much to take in right now.  

I get that.

Alas, alack, IMO if  food is a part of the complex of causes  behind his MS, a refusal to give up the food culprits is sort of as self sabotaging as an alcoholic refusing to give up alcohol.  Trying to add pharmaceuticals and supplements to limit or reverse the alcohol damage might help, but are likely to help more if the alcohol is given up.   I’d strongly suggest a 30 day minimum trial.  

60 days trial would be even better at least for some foods because of how long they can affect the body and to get past withdrawal symptoms.  But I expect 60 would seem like way too much right now.  And I realize that Thanksgiving and Christmas type season  is a hard time to start.  

 

 

I get what you are saying....I do!!

*I* don't think it's food that is behind his MS, I truly believe, with all  my heart, that it is colossal, extraordinary amount of stress that he has been under for almost a decade now.

I will be absolutely changing our diet bc only good things can happen by eliminating certain foods .  But eating 9 cups of vegetables a day??  He also doesn't eat fish at all or any fermented foods, so I am trying to realistically picture what his food be daily and basically coming up with steak and broccoli and nuts....

I did order a few books, just waiting to get them, so I guess we shall see...

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11 minutes ago, SereneHome said:

 

I get what you are saying....I do!!

*I* don't think it's food that is behind his MS, I truly believe, with all  my heart, that it is colossal, extraordinary amount of stress that he has been under for almost a decade now.

 

There’s no question in my mind from my own experience and people I know that stress makes ms worse and can be the trigger to get it going.   As well as a trigger for flares and relapses. 

Lowering stress would certainly be a good idea!  Unfortunately IME MS often tends to increase stress because of the illness itself. Because of financial stress sometimes, and so forth. 

 

11 minutes ago, SereneHome said:

I will be absolutely changing our diet bc only good things can happen by eliminating certain foods .  But eating 9 cups of vegetables a day??  He also doesn't eat fish at all or any fermented foods, so I am trying to realistically picture what his food be daily and basically coming up with steak and broccoli and nuts....

 

What does he normally eat?  

 I don’t personally use Wahls protocol specifically, and I don’t know what it calls for.

 I don’t eat 9 cups of vegetables per day, but a lot more variety than just broccoli. 

11 minutes ago, SereneHome said:

I did order a few books, just waiting to get them, so I guess we shall see...

.  

Yes.  

And decisions can change over time.

 

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23 hours ago, Pen said:

 

There’s no question in my mind from my own experience and people I know that stress makes ms worse and can be the trigger to get it going.   As well as a trigger for flares and relapses. 

Lowering stress would certainly be a good idea!  Unfortunately IME MS often tends to increase stress because of the illness itself. Because of financial stress sometimes, and so forth. 

 

 

What does he normally eat?  

 I don’t personally use Wahls protocol specifically, and I don’t know what it calls for.

 I don’t eat 9 cups of vegetables per day, but a lot more variety than just broccoli. 

.  

Yes.  

And decisions can change over time.

 

 

Not too terrible, I think. But I was thinking about what you said and realized that for the most of his pre-married life he didn't eat healthy at all. I wonder if growing up eating like crap could have anything to do with anything....

gosh, I HATE the unknown!

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10 hours ago, SereneHome said:

 

Not too terrible, I think. But I was thinking about what you said and realized that for the most of his pre-married life he didn't eat healthy at all. I wonder if growing up eating like crap could have anything to do with anything....

 

Sure!  

Even if eating what’s normally considered  “well” but if the “well” included wheat or dairy and he has an autoimmune reaction tendency to those (genetics, or gut permeability making his susceptibility to toxicity from wheat germ aglutinin worse, etc...), it could have something to do with what is going on.

what can be a good nutritious food to some people can be essentially a poison to others    

Wheat and dairy appear that they tend to be big culprits though.  The rates of MS appear to tend to be lower in both areas of world with particularly good childhood vitamin D exposure (usually sun but could be dietary) mand also in areas where wheat and dairy aren’t eaten

Iirc there are apparently around 8 different genetic patterns known to have AI reaction to wheat.  But to simplify as when thinking about eye color as if there were only blue and brown.  Say there were just two types Reactive and Unreactive.  It would be like if someone were homozygous, inheriting Unreactive genes from both parents, for Unreactive UU, then wheat would be a nutritious food.  If homozygous Reactive, RR, they would have celiac.  If heterozygous UR, they would be more susceptible to  other nonceliac AI conditions.  Add to that all the modifications on wheat so that the bread we have now isn’t what our great great grandparents had (if they were from the bread parts of world). 

 

Quote

gosh, I HATE the unknown!

 

What stage is he at? Not technically, but just from a practical POV.

 

Has he had vision impaired? Cognitive skills? Balance? Ability to walk? Hand grip? Coordination? Strength? Fatigue? Emotions? Incontinence? 

And how fast does it seem to be progressing? 

 

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3 hours ago, Pen said:

 

Sure!  

Even if eating what’s normally considered  “well” but if the “well” included wheat or dairy and he has an autoimmune reaction tendency to those (genetics, or gut permeability making his susceptibility to toxicity from wheat germ aglutinin worse, etc...), it could have something to do with what is going on.

what can be a good nutritious food to some people can be essentially a poison to others    

Wheat and dairy appear that they tend to be big culprits though.  The rates of MS appear to tend to be lower in both areas of world with particularly good childhood vitamin D exposure (usually sun but could be dietary) mand also in areas where wheat and dairy aren’t eaten

Iirc there are apparently around 8 different genetic patterns known to have AI reaction to wheat.  But to simplify as when thinking about eye color as if there were only blue and brown.  Say there were just two types Reactive and Unreactive.  It would be like if someone were homozygous, inheriting Unreactive genes from both parents, for Unreactive UU, then wheat would be a nutritious food.  If homozygous Reactive, RR, they would have celiac.  If heterozygous UR, they would be more susceptible to  other nonceliac AI conditions.  Add to that all the modifications on wheat so that the bread we have now isn’t what our great great grandparents had (if they were from the bread parts of world). 

 

 

What stage is he at? Not technically, but just from a practical POV.

 

Has he had vision impaired? Cognitive skills? Balance? Ability to walk? Hand grip? Coordination? Strength? Fatigue? Emotions? Incontinence? 

And how fast does it seem to be progressing? 

 

Thank G-d!!!! none of those.

His leg was feeling wonky after he got a flu earlier this year so in August he went to see a neuro. They did spinal MRI, didn't find anything. Did brain MRI and found lesions.

That was about a month ago, so that's where we are.

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On 11/2/2019 at 8:42 AM, SereneHome said:

@Pen  @Spy Car  and anyone else who might know..

I was recently suggested a particular supplement that might help with MS by actually regenerating damaged cells.  I emailed neuro dr and she said that there is no research on it and my husband shouldn't take it with his medication. But I am not sure how well versed she is on alternative medicine, so....

Since I am terrible at any kind of science research - how do I find out if this supplement is not good to use with his MS injection drugs?

 

I wish I were qualified to offer you sound advise here, but that isn't the case.

I know that's not helpful, but I didn't want to ignore your post.

Bill  

 

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On 11/2/2019 at 8:46 PM, SereneHome said:

 

I get what you are saying....I do!!

*I* don't think it's food that is behind his MS, I truly believe, with all  my heart, that it is colossal, extraordinary amount of stress that he has been under for almost a decade now.

I will be absolutely changing our diet bc only good things can happen by eliminating certain foods .  But eating 9 cups of vegetables a day??  He also doesn't eat fish at all or any fermented foods, so I am trying to realistically picture what his food be daily and basically coming up with steak and broccoli and nuts....

I did order a few books, just waiting to get them, so I guess we shall see...

 

Also btw, while genetics may factor in, Japan has probably got around as much stress as USA, and an indusrltrialuzed pollution level , but has low MS rate.  Some may be genetic of course, but some may be dietary.  

 

 

 

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On 11/2/2019 at 10:42 AM, SereneHome said:

@Pen  @Spy Car  and anyone else who might know..

I was recently suggested a particular supplement that might help with MS by actually regenerating damaged cells.  I emailed neuro dr and she said that there is no research on it and my husband shouldn't take it with his medication. But I am not sure how well versed she is on alternative medicine, so....

Since I am terrible at any kind of science research - how do I find out if this supplement is not good to use with his MS injection drugs?

 

Rhonda Patrick, who is a researcher herself, specializes in finding and explaining in laymen terms cutting-edge research that is happening in different areas of health. She is sort of like a clearing house. Much of her information is free but she just started a membership for $15 per month where people can, among other things, ask her questions and she'll discuss the research that looks promising that may not yet be widely used. It takes decades for new treatments and methodologies to become more mainstream. A lot of MDs, nurses and other researchers are members. Sometimes they'll toss out interesting information in discussions as well. You can then take the pertinent studies and information to your husband's MD and discuss it. Her website is FoundMyFitness.

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22 hours ago, Pen said:

 

Also btw, while genetics may factor in, Japan has probably got around as much stress as USA, and an indusrltrialuzed pollution level , but has low MS rate.  Some may be genetic of course, but some may be dietary.  

 

 

 

A close relative of ours has MS, and I remember him talking about studies that have linked MS with dairy consumption. I wonder if that could account for the difference in rates between the US and Japan.

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42 minutes ago, Selkie said:

A close relative of ours has MS, and I remember him talking about studies that have linked MS with dairy consumption. I wonder if that could account for the difference in rates between the US and Japan.

 

There are several different foods strongly linked.  

Molecules of certain foods tend to either attach to and/or mimic body tissues, leading to an immune attack against what appears to be a foreign antigen, iirc. 

And a study I read found that rates of South Asian immigrants to L London increased with time in the new environment also, so it’s not entirely racial/genetic.  It’s not entirely Vitamin D it seems because Australia with plenty of sun has high MS rates, while traditional Inuit / Eskimos apparently have none (though I suppose they get plenty of D from traditional foods). 

 

MS is a name for a condition, the final damage and symptoms that are typical of MS with lesions of demyelination on neurons——but there may be several causes or or several complexes  of causes.   So any particular x diet may help some but not all people with MS.  Still, wheat and dairy tend to be problems for many. 

 

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3 hours ago, Selkie said:

A close relative of ours has MS, and I remember him talking about studies that have linked MS with dairy consumption. I wonder if that could account for the difference in rates between the US and Japan.

Oh man, I JUST got him to eat yogurt a few months ago.......arghhhh

 

 

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2 hours ago, Pen said:

 

There are several different foods strongly linked.  

Molecules of certain foods tend to either attach to and/or mimic body tissues, leading to an immune attack against what appears to be a foreign antigen, iirc. 

And a study I read found that rates of South Asian immigrants to L London increased with time in the new environment also, so it’s not entirely racial/genetic.  It’s not entirely Vitamin D it seems because Australia with plenty of sun has high MS rates, while traditional Inuit / Eskimos apparently have none (though I suppose they get plenty of D from traditional foods). 

 

MS is a name for a condition, the final damage and symptoms that are typical of MS with lesions of demyelination on neurons——but there may be several causes or or several complexes  of causes.   So any particular x diet may help some but not all people with MS.  Still, wheat and dairy tend to be problems for many. 

 

 

I don't know what to do, honestly. His neuro is doing a low sodium study but other than that says that there are no evident of anything other diet correlations.

I don't know how to start eliminating things and how long to wait to see if there is any results.

I need to find LOCAL professional who is well-versed in all aspects of MS - western and alternative remedies and has a common sense approach to life!!  I need a unicorn!!!!!!!!!!!!!!!!

 

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10 minutes ago, SereneHome said:

 

I don't know what to do, honestly. His neuro is doing a low sodium study but other than that says that there are no evident of anything other diet correlations.

I don't know how to start eliminating things and how long to wait to see if there is any results.

I need to find LOCAL professional who is well-versed in all aspects of MS - western and alternative remedies and has a common sense approach to life!!  I need a unicorn!!!!!!!!!!!!!!!!

 

 

You and your husband probably need to be your own personal health detectives, your own nearest to a unicorn you’re likely to get.  

Also be aware that neurologists tend to look at research specific to MS, not to other AI. 

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This is a little over view. A lot of research  is being done..   which is way different than saying there is any proof that any particular diet would be helpful for  any particular person.   

So you sort of have to decide what you want to try or not try.  Some also depends on side effects.  Difficulty .  Maybe how I’ll the person is. With just a wonky leg, giving up foods might not be worth it to him.  

 

https://www.semanticscholar.org/paper/Impact-of-Dietary-Antigens-on-Multiple-Sclerosis-Toohey/97c9fff03afccfaf165d5fa10203c3114ca195ff

 

 

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7 hours ago, BeachGal said:

 

Rhonda Patrick, who is a researcher herself, specializes in finding and explaining in laymen terms cutting-edge research that is happening in different areas of health. She is sort of like a clearing house. Much of her information is free but she just started a membership for $15 per month where people can, among other things, ask her questions and she'll discuss the research that looks promising that may not yet be widely used. It takes decades for new treatments and methodologies to become more mainstream. A lot of MDs, nurses and other researchers are members. Sometimes they'll toss out interesting information in discussions as well. You can then take the pertinent studies and information to your husband's MD and discuss it. Her website is FoundMyFitness.

thank you.

She actually has an interview with Dr Wahl, so that's a great start

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On 11/5/2019 at 6:00 PM, SereneHome said:

thank you.

She actually has an interview with Dr Wahl, so that's a great start

 

Watch Valter Longo's two interviews with Rhonda, also. He's the researcher at USC who has had some pretty good success with a small, human clinical trial using fasting or a fasting-mimicking diet. A short article about Longo's mice and human multiple sclerosis results.

https://keck.usc.edu/diet-that-mimics-fasting-may-also-reduce-multiple-sclerosis-symptoms/

Other researchers mentioned in the link above who are doing some of the fasting/fasting-mimicking diet and MS studies.

"The study co-authors were In Young Choi, Sebastian Brandhorst, Jorge Suarez and Todd Morgan, and Min Wei, all of the USC Davis School; Patra Childress of the Keck School of Medicine at USC; Arko Ghosh of the USC Dornsife College of Letters, Arts and Sciences; Andreas Michalsen, Friedemann Paul and Markus Bock of Charité University Medicine Berlin; and Laura Piccio, Bryan Bollman and Anne Cross of Washington University School of Medicine."

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