22 replies to this topic

[REBUILDER]

I'd like to see posts about what other people here would choose to do if they had Multiple Sclerosis.  Below is a list of the categories/choices that you would have to address. I've already read all the suggestions of all the individual celebrity physicians, the popular books on MS, and the popular MS forums.  I'll post my current regimen on my profile but in this thread I'm seeking the kind of insight that can only be found on this forum.  I'll make a similar post on other forums with other unique audiences, too.

1. Disease Modifying Drugs
2. Diet
3. Lifestyle
4. Complimentary and Alternative Healthcare
5. Nutritional Supplements
6. Illegal / Experimental / Grey Market things

 

[FunkOdyssey]

Paleolithic Ketogenic Diet as described by the Paleomedicina group in Hungary.  Unlike the AIP diet, wahls diet, and other diets that purport to resolve the increased intestinal permeability that drives autoimmune disease, the PKD actually succeeds and they have the PEG 400 tests to prove it.  If I were you I'd absorb every published paper on the diet and youtube interview that Zsofia Clemens has put out there. Here's the basic protocol if you want to dive in: https://www.paleomed...peutic_protocol

 

It's essentially a superior version of the carnivore diet that has achieved widespread notoriety lately for reversing autoimmune diseases left and right.  I'm personally seeing amazing benefits on it after just a month, far beyond any other intervention I've tried in my 15 year quest for better health.

Edited by FunkOdyssey, 13 November 2018 - 07:23 PM.

[8bitmore]

Personally I would primarily be looking at LDN or Low Dose Naltrexone since it has awesome potential in terms of re-normalising the immune system. For some it reverses whatever issue is at hand and can then be gradually stopped, for others it requires continual intake but at the minute doses required it is entirely doable. I recommend watching for a brief introduction/overview with an MD's comments on dosage and usage within a patient group.

 

Btw: something very odd is going on with the formatting of this post, could a mod please take a look?

Edited by 8bitmore, 13 November 2018 - 09:18 PM.

[REBUILDER]

Personally I would primarily be looking at LDN or Low Dose Naltrexone since it has awesome potential in terms of re-normalising the immune system. For some it reverses whatever issue is at hand and can then be gradually stopped, for others it requires continual intake but at the minute doses required it is entirely doable....

 

 

 

Cool, I'm already on Low Dose Naltrexone. Probably going to have my dose lowered in a few days. For anyone who doesn't want to sit through that 30 minute video, here's the blog post: https://chriskresser...immune-disease/

 

I'm also starting Testosterone Replacement Therapy** - for low T and Remyelination. Researchers Identify Testosterone-triggered Molecule that Protects Men from MS :
 

They found that, in male mice, testosterone could prompt immune cells called mast cells to produce the signaling molecule interleukin-33, or IL-33. The molecule promoted a cascade of cell signals that prevented the activation of inflammation-generating Th17 immune cells. Th17 cells play a key role in the destruction of nerve cells’ protective myelin layer — a hallmark of MS.

 

I'm on the Coimbra Protocol: https://www.coimbraprotocol.com/ (Vitamin D Mega Dosing.)

 

And I'm trying to decide on a dose of Silymarin, Looks like I have to take it 3 times per day, at a 700mg dose equivalent:

 

• Immunoregulatory Effects of Silymarin on Proliferation and Activation of Th1 Cells Isolated from Newly Diagnosed and IFN-ß_1b-Treated MS Patients
• Silymarin Ascending Multiple Oral Dosing Phase I Study in Noncirrhotic Patients With Chronic Hepatitis C

 

Finally, I'll be focusing on Gut Health because I believe that this explains a great deal:

Do gut bacteria make a second home in our brains?

 

So far:

 

LDN, Coimbra Protocol, TRT, Silymarin MegaDosing, and a focus on my Microbiome. I have a list of specific supplements for MS gut health somewhere. I'll post it later tonight.

 

 

 

Edited by REBUILDER, 13 November 2018 - 11:09 PM.

[John250]

Personally I would primarily be looking at LDN or Low Dose Naltrexone since it has awesome potential in terms of re-normalising the immune system. For some it reverses whatever issue is at hand and can then be gradually stopped, for others it requires continual intake but at the minute doses required it is entirely doable. I recommend watching https://www.youtube....h?v=l8sWzoLtop4 for a brief introduction/overview with an MD's comments on dosage and usage within a patient group.

Btw: something very odd is going on with the formatting of this post, could a mod please take a look?

I second this. I still have a bottle of LDN From irc.bio I think I have some type of undiagnosed autoimmune disorder but I have been afraid to try because you have to take at night and I cannot afford getting a restless night sleep at this point in my life.

[gamesguru]

just repasting somethings i found the other day coz i'm too lazy to do any new research right now

 

ALCAR, melatonin[1], bacopa, vitamin D, nargingin[2] (grapefruit)

Edited by gamesguru, 14 November 2018 - 02:35 AM.

[REBUILDER]

I second this. I still have a bottle of LDN From irc.bio I think I have some type of undiagnosed autoimmune disorder but I have been afraid to try because you have to take at night and I cannot afford getting a restless night sleep at this point in my life.

I work at night and take 4.5mg when I get home in the morning.  I don't know if it works as advertised or not, but it definitely does mess with my sleep, and that effect has not gone away like it's supposed to so I am going to ask them to lower my dose to 3 mg at my next Functional Medicine appointment, next week.  I have read that some LDN users who have difficulty sleeping at night just take it in the morning. OK, I found the article that mentions taking it during the day so I posted it below. I've also only been taking it for 2 months so I'll post a follow up on LDN in a year.  The article quoted below says "Users have reported to notice a difference after 9 to 12 months."  

 

"The dose recommended by Dr. Bihari was 1.5mg to 4.5 mg taken at bedtime. However studies show that taking LDN at night is not necessary. If side effects occur then lowering the dose is recommended, or taking it in the morning in case of insomnia."

 

https://www.ldnresea...adeep-chopra-md

[John250]

I read that as well but from what I gathered it works best night. Not necessarily night but it works best before you go to sleep. Supposedly it antagonizes opioid receptors and then that effect increases endorphins that are naturally produced when you sleep. If you take it during the day or when you’re awake supposedly you can feel pretty crappy during that time span it’s in your system. What I can’t seem to find is how long the endorphin increased lasts before they return to baseline. I would assume pretty quickly since LDN is required everyday.

[REBUILDER]

I read that as well but from what I gathered it works best night. Not necessarily night but it works best before you go to sleep. Supposedly it antagonizes opioid receptors and then that effect increases endorphins that are naturally produced when you sleep. If you take it during the day or when you’re awake supposedly you can feel pretty crappy during that time span it’s in your system. What I can’t seem to find is how long the endorphin increased lasts before they return to baseline. I would assume pretty quickly since LDN is required everyday.

 

Yeah, I've been told not to skip a single dose and to take it at the same time every morning even if I do not work the preceeding night, in order to keep it active in my system.

The following info is from https://osteopathic....resh-slides.pdf ...

Active metabolite: 6-beta-naltrexol

Renal elimination: 53-79% 

Half Life of Naltrexone: 4-6 hours 

Half Life of 6-beta-naltrexol: 13 hours

 

just repasting somethings i found the other day coz i'm too lazy to do any new research right now

 

ALCAR, melatonin[1], bacopa, vitamin D, nargingin[2] (grapefruit)

I googled everything on that list and I am surprised, I did not know those items had relevant effects. I'm going to have to whittle down my list.

[world33]

Hi Rebuilder,

 

If I was diagnosed with MS I would do the following (warning: just my approach and personal opinion, I am not a doctor, a geneticist or a biologist) steps:

1) Take a Whole-Genome Sequencing (WGS) with genos.co (US only) or dantelabs.com ($499)

2)  Analyze the raw data with Enlis Genome Personal ($79.95) or ask a certified genetic counselor to do it for me ($?)

3) Find which genetic mutations I have according to the genes listed by Malacards for Multiple Sclerosis, paying particular attention to the so called elite genes marked with a star

4) Find, if available, a treatment that specifically target my genetic mutation(s) including drugs or supplements; I am not in a position to recommend any treatment and I would rely on my personal research and the help of professionals dealing with this disease.

 

Good luck!

 

 

Edited by world33, 14 November 2018 - 10:08 AM.

[world33]

In addition to Enlis genome Personal you can also try Promethease ($12) which is based on snpedia.com. In their website they list some interesting info about genes associated with Multiple Sclerosis.

[pamojja]

I'm on the Coimbra Protocol: https://www.coimbraprotocol.com/ (Vitamin D Mega Dosing.)

 

I hope you do it with all the precautions and an experienced practitioner. Read of a very bad experience even under these condition here (read to the end of that thread).

[jack black]

OP, you asked for a lifestyle advice? here is mine. quit shift/night work. it's literally killing you.

Edited by jack black, 14 November 2018 - 05:25 PM.

[REBUILDER]

I hope you do it with all the precautions and an experienced practitioner. Read of a very bad experience even under these condition here (read to the end of that thread).

Yes, I have had one visit with a D.O. trained by Dr.Coimbra but I am probably switching to a DC who seems much more professional and responsive.

OP, you asked for a lifestyle advice? here is mine. quit shift/night work. it's literally killing you.

I know. Unfortunately this is currently my best available option. I hope to switch before the end of 2019.

In addition to Enlis genome Personal you can also try Promethease ($12) which is based on snpedia.com. In their website they list some interesting info about genes associated with Multiple Sclerosis.

Dude I am grateful for your response and intend to do everything you have suggested. Thank you for this information

[REBUILDER]

Hi Rebuilder,

 

If I was diagnosed with MS I would do the following (warning: just my approach and personal opinion, I am not a doctor, a geneticist or a biologist) steps:

1) Take a Whole-Genome Sequencing ...

4) Find, if available, a treatment that specifically target my genetic mutation(s) including drugs or supplements; I am not in a position to recommend any treatment and I would rely on my personal research and the help of professionals dealing with this disease.

 

OK I did more research and found that there are no treatments specifically targeting genetic mutations for MS, but there is one treatment I should avoid if I have one particular mutation. For financial reasons I will simply avoid that particular treatment, and I will prioritize getting the genetic tests for my daughter if she wants them, and then later on for myself when it is affordable for me.  The problem with genetic tests in the USA is our unstable medical system.  One year it might be illegal for insurance companies to discriminate against people with genetic predispositions, and then after a 2 to 4 years-long political cycle it could be completely legal for these companies to deny coverage. 

[Mind_Paralysis]

As others have said - the best thing you can do is to get in contact with an EXPERT neurologist, and then try to become a patient in his care - there's nothing quite like a cutting-edge Dr. in your corner.

 

With that said...

 

I would have a look at what different growth factors are involved in Remyelination, and myelination in general, and then cross-reference those with upcoming experimental drugs that either increase production of these, or work as more powerful direct replacement-agonists of those pathways.

(for instance, NSI-189 looks to be an agonist of BDNF, in the hippocampus, and hence helps dramatically with depression)

 

Have a look at articles like this, and then look into what drugs are coming up and connected into the growth factors mentioned:

 

The role of growth factors as a therapeutic approach to demyelinating disease

https://www.ncbi.nlm...les/PMC5010931/

 

Platelet Derived Growth Factor (PDGF)

Strikes me, particularly, as a factor to look deeper into.

 

https://en.wikipedia...d_growth_factor

 

Please note that there appears to be multiple receptor-types of PDGF, so read up a bit on whether we know if any of them are more prolific in the Central-Nervous-System, since you may only need to hit a specific variation of the receptor to get the required effects.

 

Any drug which affects PDGF will of course also mostly just delay the disease, it would appear - but, it also appears as if that's the safest growth factor to mess around with when it comes to MS.

 

 

Since such drugs could be a pipe-dream I would also suggest looking into IBUDILAST - this drug, which interestingly enough, alters platelet behaviour (effects on PDGF then?), has also recently been shown to inhibit the progression of neural atrophy in MS, which indicates that it may slow down disease-progression overall.

 

https://en.wikipedia.../wiki/Ibudilast

 

https://medicine.wus...osis-treatment/

 

You should be able to get a hold of Ibudilast either through your Dr., or through the internet. It's a relatively safe drug, as you can see. (mostly used for the treatment of asthma, the other effects are recent discoveries)

 

Edited by Mind_Paralysis, 15 November 2018 - 08:24 PM.

[world33]

OK I did more research and found that there are no treatments specifically targeting genetic mutations for MS, but there is one treatment I should avoid if I have one particular mutation. For financial reasons I will simply avoid that particular treatment, and I will prioritize getting the genetic tests for my daughter if she wants them, and then later on for myself when it is affordable for me.  The problem with genetic tests in the USA is our unstable medical system.  One year it might be illegal for insurance companies to discriminate against people with genetic predispositions, and then after a 2 to 4 years-long political cycle it could be completely legal for these companies to deny coverage. 

 

Your concern makes sense. If you use an anonymous prepaid credit card and a fictious name when ordering the DNA Kit nobody could ever track you down and match your identity with the DNA results. Good luck.

[Logic]

Is been ages so I'm rusty as hell but IIRC there's a viral connection to MS and similar diseases:
https://www.google.c...i39.tEB4C38hf2Y

Lauric Acid and co in Coconut oil disrupt the lipid layer (Harry Potter's invisible cloak of the virus world) on many virii, allowing your vit D charged immune sys to recognize them for what they really are and take them out.
(Basically this goes for all the 'incurable' virii everyone shits themselves about)
Much maligned BHT does the same and I once found a very old reference to a synergy with VCO IIRC.
Do look up the co factors to be taken with higher doses of BHT here if you choose to go this route.

NB that the above only works for extracellular virii.
ie:  Any infected cell (now virus factory) is safe until the cell pops, so once off or sporadic dosing wont help.
If you want to kill such infected cells:
https://www.longecit...ioral-diseases/
https://www.longecit...n-by-pathogens/
etc.

[chris85]

Yeah the keto/paleo thing is definitely worth trying. I'd actually go the herbal route: Ashwagandha, gotu kola, St. John's wort, reishi. It's a bit like going on a voyage into the super unknown.

Edited by chris85, 19 November 2018 - 05:58 PM.

[world33]

For anyone interested Dante Labs offers full DNA analysis (Whole Genome Sequencing) for only $199 for Black Friday Week. I paid $349 so it is a very very very good offer....

https://us.dantelabs.com/

Edited by world33, 20 November 2018 - 09:36 AM.

[pamojja]

deleted (wrong place posted).

Edited by pamojja, 20 November 2018 - 10:55 AM.

[truboy]

Paleolithic Ketogenic Diet as described by the Paleomedicina group in Hungary.  Unlike the AIP diet, wahls diet, and other diets that purport to resolve the increased intestinal permeability that drives autoimmune disease, the PKD actually succeeds and they have the PEG 400 tests to prove it.  If I were you I'd absorb every published paper on the diet and youtube interview that Zsofia Clemens has put out there. Here's the basic protocol if you want to dive in: https://www.paleomed...peutic_protocol

 

It's essentially a superior version of the carnivore diet that has achieved widespread notoriety lately for reversing autoimmune diseases left and right.  I'm personally seeing amazing benefits on it after just a month, far beyond any other intervention I've tried in my 15 year quest for better health.

 

Could you please provide examples of your breakfast, lunch, dinner, etc?

[adamh]

Stem cell therapy is starting to be used for this disease. From what I've heard, umbilical blood stem cells seem to work the best

 

https://themscure.bl...-reference.html

 

https://multiplescle...ransplantation/