I'm delighted to see you recommend iron supplements to MS patients with RLS. It is now first line treatment amongst world experts (Mayo Clinic Algorithm).However, raising serum ferritin tends not to help RLS caused by MS because the RLS is caused by spinal cord scarring rather than low brain iron.( As long as you don't ever recommend dopaminergic drugs, I'm a fan!)
Metformin triggers worsening RLS for most, and as it's my worst ever MS symptom, so I will avoid.
I take vitamin D & waterfall D mannose, and I do switch to a keto diet every few months and practise intermittent fasting to help MS. I also take alpha lipoic acid & Nattokinase & anti histamines for Long Covid symptoms. I didn't know ALA also helped MS.
Thanks for posting these articles. It's so important to feel 'in control' of MS by taking supplements and following diets in addition to DMTs.
Thank you for your contribution. I went through an odyssey before I was finally prescribed Pramipexole for the RLS. Before that, THC had worked well. But unfortunately the effect suddenly wore off. The doctors then considered only antispasticity medications. Finally, however, they gave in. Without Pramipexole, sleep would be unthinkable. Unfortunately, there seems to be no awareness of the connection between MS and this particular form of RLS.
Read all you can about Augmentation. Pramipexole is miraculous at first. Then it overstimulates the D1 receptors & feeds the disease. It's no longer prescribed by experts. Watch out for the signs.
Thank you for the answer. I know about augmentation. Fortunately, it affects only a part of the patients. And if the RLS is induced by MS, and so the causes are different, maybe there are even less cases?
What else can be done? I have been on an intermittent diet for years because of the MS. This has no effect.
It’s estimated that there are c.130,000 people with MS in the U.K. It is also estimated that 1 in 10 people over 40 in the U.K. have type 2 diabetes. So there’s going to be a substantial number of people with MS who also have T2 diabetes. These people are also likely to be on Metformin to control their T2 diabetes. Wouldn’t neuros already have a “feel” as to whether their patients on Metformin are doing “better” than their patients not on Metformin?
Not that we are aware of. We even looked at post-mortem material of those pwMS who died and there was no real difference between those on Metformin compared to pwMS not on Metformin.
I suspect Metformin may need to be used in combination with other treatments.
The effects of metformin apparently vary wildly depending on whether you have T2 diabetes or not. The ketosis / macrophagy effect is thought mainly to happen in patients who are not diabetic.
Re: vitamin D. Basic vitamin D production requires inputs, and fixing a deficiency simply by high dosing the end product doesn’t fix the problem and creates more problems. Think high school chemistry. A + B + heat = C. No C? Check A, B, and heat. Failing grade if we grab C off the bench and dump it in.
My vitamin D was low EVEN WHEN OUTSIDE all the time in the summer. Magnesium is a critical cofactor for pretty much every step of vitamin
D transfer and metabolism. I was lucky to find this out early due to intractable spasticity, spasms and twitching which turned into fasciculations, meaning an ALS rule out.
If you have MS patients with headache, migraine, anxiety, depression, other MH comorbidities, twitching, spasticity, spasms, type 2 diabetes and more, higher doses of D3 will cause increasing magnesium deficiency and more issues. My UMN right side spasticity GOT WORSE as my D3 recommendations increased, and with D3 alone I barely made it out of low normal. Magnesium tests aren’t so helpful (although I was actually low) because our blood levels are under homeostatic control. Blood levels can stay “normal” even as tissues become deficient.
(But again, you can’t use magnesium like pharma - more is not better either. Too much will destabilize calcium levels and cause the very thing you’re trying to treat - spasticity).
More recently and accidentally I discovered that vitamin B2 is also used in the synthesis of vitamin D3. Given extra to see if it would help new onset headache (it did not), instead my D levels jumped from 140s (range 75-250) to 175 for first time ever, no other changes. Research to back up my experience exists.
Biohacking is a valuable tool. As an ex-chemist with a nerdy love of biochemical pathways, the use of high dose supplements is akin to using supplements as pharma. Where in fact, supplements do support actual deficiencies in THE RIGHT dose. Which is individual.
The most helpful biohack I’ve done was my genetics to find out (and confirm) why things I’ve done have or haven’t been helpful. For instance, keto and saturated fat is a dangerous recommendation for some of us! I learned the hard way. Then confirmed once I started assessing my raw data.
The answers lie, not in allopathic medicine alone, nor holistic medicine alone. Ideally in a marriage of both where practitioners understand that both sides have strengths and good information.
For me personally, with a history of toxic aldehyde exposure, NAC has been one of the most valuable supplements I take. (If you’re genetics are poor, you may not be able to do the conversions from NAC to glutathione). Sleep has been most impacted by ubiquinol (not ubiquinone) and magnesium. d levels improved most with magnesium and riboflavin.
I can’t take metformin - even my naturopathic doctor wants me on it! I’m allergic to an inert ingredient in it. And it can’t be prescribed because I reversed my T2D diagnosis with food naturopathic medicine. Planning to start berberine again.
Re alpha lipoic acid, LIAS gene variants determine our need for that. Will ever person with MS need it? Maybe, maybe not.
Were you aware that metabolism of Tecfidera requires good aldehyde metabolism genetics? All I got from Tec was a rash … and my genes tell me why.
This is so interesting. Your sentence.” If you have MS patients with headache, migraine, anxiety, depression, other MH comorbidities, twitching Spasticity “ that’s my picture. I will read the link later. 👍
1000mg Metformin - you can get it over the counter here in Spain (well technically you need a prescription but if you are the same age and shape I am, they pretty much assume you have a prescription "back home")
Magnesium citrate 500mg
Alpha Lipoic acid 600mg
5htp 300mg (low mood and migraines)
B12 3600mg
75mg aspirin
10mg baclofen (prescribed)
4000mg Omega 3
5mg folic acid (prescribed)
10,000 iu vitamin D3
200ug vitamin K2
400iu vitamin E
200mg provigil (prescribed) - 5 days on, 2 days off
20mg atorvastatin (prescribed) at night and I'm thinking of upping the metformin to twice daily.
Looks like a good stack. Not sure about atorvastatin.
May I suggest Clemastine (may work well in combination with metformin) and getting prescribed an NMDA receptor antagonist like Amantadine (or dextromethorphan if you can get it OTC). Amantadine is a life saver: virtually no fatigue and it lifted off 10 years long treatment resistant depression in the span of two weeks.
Vitamin D3 yes but very subtle and over the course of a number of months of challenge, de-challenge and re-challenge, several years apart (I've been on D3 a long time).
The prescription drugs, absolutely.
The rest of them I really don't know. Main effects on my health at the moment are the consequences of being on mavenclad and waiting for those consequences to rectify themselves.
I am on Tecfidera, and my neurologist told me to be careful about taking any other antioxidants.
I take iron and B12 because I don't eat meat, D3 because at diagnosis I was deficient (since retested and level fine on the 5000 IU I was prescribed), flaxseed oil, omega 3 from algae (though I do eat fish and shellfish), magnesium citrate (no more leg cramps!). I am also currently experimenting with Quercetin which I have heard may help repair myelin. I also heard it might help with hayfever but I have definitely not seen any improvement there! So may not bother with it for much longer.
Could there be negative side effects of taking LA, propionic and butyric acid at the same time? If one did regular blood tests for liver health etc could one take all three?
I do take modafinil. I buy this myself as can’t persuade anyone GP or neuro. to prescribe it. It’s a life saver for me.
Also take alpha lipoic acid in the R form as understood it was better absorbed. And acetyl-l-carnitine, taurine.
I take co enzyme Q10 and magnesium and quite a selection of vitamins - D, K2, C, B complex, E (not every day). Also take probiotics and phophotydylserine, fish oil and flaxseed oil. Also oregano oil.
Can I ask how you buy Modafinil, please? I also love Modafinil. My current neurologist prescribes it for me, but my last one wouldn't, and if I ever get another neurologist who won't I'm going to have to try buy it...
Modafinil's by far my favourite medication for symptoms. It's awful that some neurologists won't prescribe it to MS patients 🤕 My personal experience, is that in the UK it depends which NHS health trust the neurologist answers to. Basically, it comes down to money, as most things do, and a neurologist will only prescribe it if their health authority will pay for it. I need to look into whether one can get it on private prescription, should the need arise.
I hack as best as I can, though I found that metformin made fatigue worse and I couldn't get as much benefit from exercise as I hoped to. I thought exercise is probably more important than 'potential remyelination', so I stopped, and fatigue and progress got better again. In the biohacker community, there is also much talk about NAD precursors, and a 2022 Cell Metab paper, with 30 patients with Parkinson's disease, found that NR raised brain NAD levels: https://pubmed.ncbi.nlm.nih.gov/35235774/ There is a new trial by the same group in SPMS as well. I decided to try NR because it seems safe. Not noticing any effects, though. A problem when self-prescribing these chemicals is to know when you've tried long enough or if they're having a subtle effect that might be important later. That ALA paper reported effects after 2 years.
I wonder if these 'anti-aging' agents may have the best effect on individuals aged 45-50+ ? How many of those MSologists taking metformin were in their 30'ies?
I used to be on tecfidera. It's not as bad as tecfidera. Not even in the same ballpark. The first few months are a little uncomfortable but you get used to it pretty soon and side effects definitely wear off.
I have often thought what if we found a way to block EBV entry into cells post initial infection, then induce reactivation and lysis, while preventing disease progression through CD-20 antagonist (erroneous antibody production)?
1. Vaccination(pipeline) or Antiviral(preventing cell entry while allowing lytic reactivation)
3. (Induction)EBV lytic activation through butyric acid, hopefully causing non-cd20 cells that are infected to lyse.
4. EBV reinfection of new cells prevented through 1 & 2.
Is it possible that aHSCT is failing in some patients due to EBV not being completely wiped out in all cellular reservoirs? Could a protocol of one like above followed by aHSCT improve the outcomes of the aHSCT therapy by increasing the chances of EBV elimination?
Thanks for the suggestion! I have tried the Better You sprays, they still made the nausea worse, unfortunately. And I need calcium for osteopenia. I'm prescribed Evacal (callium carbonate/D3), but the side-effects are too bad so I can't take it. Alive's Tricalcium phosphate/D3 is the best I've found, but I'm not taking enough. I'm trying to slowly increase it 🤕
I’ve tried replacing supplements with specific food. I have 2 Brazil Nuts for breakfast with 2 walnuts, a little yoghurt, and a few berries and pumpkin seeds I might then have 1 more BN later on. I was under the impression not to eat a lot. “You can add just one Brazil nut a day to your diet with a meal of your choice, but it would be recommended to not exceed more than three” Based on this I dropped magnesium supplements. Plus I couldn’t swallow them ! Like bullets. I eat as little prosessed as possible and try following Mediterranean diet.
I found this too about Brazil nuts. What are the 5 main health benefits of Brazil nuts?
1. Good for the brain
“Brazil nuts contain a polyphenol known as ellagic acid which has both antioxidant and anti-inflammatory properties that may offer neuroprotective and anti-depressant effects on the brain. Further research has shown that selenium is involved in supporting key brain signalling pathways such as GABA and dopamine signalling within the central nervous system, which is of particular importance in conditions such as Alzheimer's and Parkinson's disease.”
So I concluded better bio hacking from food as opposed to sups
I also try to have a teaspoon of Turmeric a day apparently it should be eaten with healthy fat/ oil for best results. There is research on this. Listen to Just 1 thing with Dr M Mosley.
I try to do 30 mins of seated exercise a day. I mix it up. I use the MS gym and a guy called Jacob Cino on You Tube for seated yoga. Mindfulness and meditation daily.
Dumped a mobility scooter to self propel shorter distances and a Mountain Trike that really raises my heart rate. 🤣
For a decade I’ve been doing most of these things. The good thing about lockdown a lot of exercises were put on You Tube, and included many seated options.
I take Oxybutinin when I go out. ( side effects from better meds)
Just started Tizanidine instead of diazepam for excruciating spasms that twist my feet. ( been through other anti spasmodic including Sativax )
Emergency meds for dizziness from Vestibular migraine.
I have 2 meals a day in a 4 hour window, usually starting around 2-3pm when I begin to feel hungry. I am in the 5th month. As a recovering carb addict it is freeing to not be tied to the constant hunger and fatigue circle, there is no postprandial somnolence after meals (carnivore) and until the weather warmed up, my energy was consistent through the day. Roll on autumn.
I take 1000iu D3, 400mg chelated magnesium and 22mg zinc picolinate. I take ALA and Co Q10 on and off but they're pricey.
There is a lot of variation in the info online regarding nutrients and I am not sure what the best information is. I also don't think enough is known about them in terms of mechanisms and whether taking them individually outside of a food source alters them. I imagine there must be cascades of activity in the chemical processes and that removing one part of that could deactivate the bioavailability somewhat or entirely.
One comment that I often see in the carnivore community is that they no longer get sunburn and The 5 Minute Vitamin D Talk by Dr Paul Mason is interesting.
I have a question, how important do you think it is that vitamin K is taken with D3?
I don't know about vitamin K. I will need to research it. It was only recommended for people who have fat malabsorption as it is one of the fat soluble vitamins.
I've been somewhat curious about metformin (and statins) because many with MS are already taking those. I take omega 3, NAD, and glutathione on a regular basis. Occasionally, I take exogenous ketones (say when it's 90 degrees outside and I don't want to deal with heat issues), or magnesium and melatonin for sleep. I used clemastine for sleep several years ago and the drowsiness from a half dose lingered all morning.
I'm delighted to see you recommend iron supplements to MS patients with RLS. It is now first line treatment amongst world experts (Mayo Clinic Algorithm).However, raising serum ferritin tends not to help RLS caused by MS because the RLS is caused by spinal cord scarring rather than low brain iron.( As long as you don't ever recommend dopaminergic drugs, I'm a fan!)
Metformin triggers worsening RLS for most, and as it's my worst ever MS symptom, so I will avoid.
I take vitamin D & waterfall D mannose, and I do switch to a keto diet every few months and practise intermittent fasting to help MS. I also take alpha lipoic acid & Nattokinase & anti histamines for Long Covid symptoms. I didn't know ALA also helped MS.
Thanks for posting these articles. It's so important to feel 'in control' of MS by taking supplements and following diets in addition to DMTs.
Thank you for your contribution. I went through an odyssey before I was finally prescribed Pramipexole for the RLS. Before that, THC had worked well. But unfortunately the effect suddenly wore off. The doctors then considered only antispasticity medications. Finally, however, they gave in. Without Pramipexole, sleep would be unthinkable. Unfortunately, there seems to be no awareness of the connection between MS and this particular form of RLS.
Read all you can about Augmentation. Pramipexole is miraculous at first. Then it overstimulates the D1 receptors & feeds the disease. It's no longer prescribed by experts. Watch out for the signs.
Thank you for the answer. I know about augmentation. Fortunately, it affects only a part of the patients. And if the RLS is induced by MS, and so the causes are different, maybe there are even less cases?
What else can be done? I have been on an intermittent diet for years because of the MS. This has no effect.
I've found taking magnesium about two hours before bed helps hugely with restless legs.
It definitely helps mild, intermittent RLS. Sadly it nade zero difference to my severe, refractory RLS.
It’s estimated that there are c.130,000 people with MS in the U.K. It is also estimated that 1 in 10 people over 40 in the U.K. have type 2 diabetes. So there’s going to be a substantial number of people with MS who also have T2 diabetes. These people are also likely to be on Metformin to control their T2 diabetes. Wouldn’t neuros already have a “feel” as to whether their patients on Metformin are doing “better” than their patients not on Metformin?
Not that we are aware of. We even looked at post-mortem material of those pwMS who died and there was no real difference between those on Metformin compared to pwMS not on Metformin.
I suspect Metformin may need to be used in combination with other treatments.
Thank you
Have been wondering about this too!
The effects of metformin apparently vary wildly depending on whether you have T2 diabetes or not. The ketosis / macrophagy effect is thought mainly to happen in patients who are not diabetic.
Re: vitamin D. Basic vitamin D production requires inputs, and fixing a deficiency simply by high dosing the end product doesn’t fix the problem and creates more problems. Think high school chemistry. A + B + heat = C. No C? Check A, B, and heat. Failing grade if we grab C off the bench and dump it in.
My vitamin D was low EVEN WHEN OUTSIDE all the time in the summer. Magnesium is a critical cofactor for pretty much every step of vitamin
D transfer and metabolism. I was lucky to find this out early due to intractable spasticity, spasms and twitching which turned into fasciculations, meaning an ALS rule out.
Please see figure 1 here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3765911/
If you have MS patients with headache, migraine, anxiety, depression, other MH comorbidities, twitching, spasticity, spasms, type 2 diabetes and more, higher doses of D3 will cause increasing magnesium deficiency and more issues. My UMN right side spasticity GOT WORSE as my D3 recommendations increased, and with D3 alone I barely made it out of low normal. Magnesium tests aren’t so helpful (although I was actually low) because our blood levels are under homeostatic control. Blood levels can stay “normal” even as tissues become deficient.
(But again, you can’t use magnesium like pharma - more is not better either. Too much will destabilize calcium levels and cause the very thing you’re trying to treat - spasticity).
More recently and accidentally I discovered that vitamin B2 is also used in the synthesis of vitamin D3. Given extra to see if it would help new onset headache (it did not), instead my D levels jumped from 140s (range 75-250) to 175 for first time ever, no other changes. Research to back up my experience exists.
Biohacking is a valuable tool. As an ex-chemist with a nerdy love of biochemical pathways, the use of high dose supplements is akin to using supplements as pharma. Where in fact, supplements do support actual deficiencies in THE RIGHT dose. Which is individual.
The most helpful biohack I’ve done was my genetics to find out (and confirm) why things I’ve done have or haven’t been helpful. For instance, keto and saturated fat is a dangerous recommendation for some of us! I learned the hard way. Then confirmed once I started assessing my raw data.
The answers lie, not in allopathic medicine alone, nor holistic medicine alone. Ideally in a marriage of both where practitioners understand that both sides have strengths and good information.
For me personally, with a history of toxic aldehyde exposure, NAC has been one of the most valuable supplements I take. (If you’re genetics are poor, you may not be able to do the conversions from NAC to glutathione). Sleep has been most impacted by ubiquinol (not ubiquinone) and magnesium. d levels improved most with magnesium and riboflavin.
I can’t take metformin - even my naturopathic doctor wants me on it! I’m allergic to an inert ingredient in it. And it can’t be prescribed because I reversed my T2D diagnosis with food naturopathic medicine. Planning to start berberine again.
Re alpha lipoic acid, LIAS gene variants determine our need for that. Will ever person with MS need it? Maybe, maybe not.
Were you aware that metabolism of Tecfidera requires good aldehyde metabolism genetics? All I got from Tec was a rash … and my genes tell me why.
This got long. My apologies. 😅 so many of
Our answers are not “across the board” answers.
This is so interesting. Your sentence.” If you have MS patients with headache, migraine, anxiety, depression, other MH comorbidities, twitching Spasticity “ that’s my picture. I will read the link later. 👍
Oh and type 2 diabetes as well - some sort if magnesium relationship that hasn’t been fully identified.
Ah, well since you ask:
1000mg Metformin - you can get it over the counter here in Spain (well technically you need a prescription but if you are the same age and shape I am, they pretty much assume you have a prescription "back home")
Magnesium citrate 500mg
Alpha Lipoic acid 600mg
5htp 300mg (low mood and migraines)
B12 3600mg
75mg aspirin
10mg baclofen (prescribed)
4000mg Omega 3
5mg folic acid (prescribed)
10,000 iu vitamin D3
200ug vitamin K2
400iu vitamin E
200mg provigil (prescribed) - 5 days on, 2 days off
20mg atorvastatin (prescribed) at night and I'm thinking of upping the metformin to twice daily.
Looks like a good stack. Not sure about atorvastatin.
May I suggest Clemastine (may work well in combination with metformin) and getting prescribed an NMDA receptor antagonist like Amantadine (or dextromethorphan if you can get it OTC). Amantadine is a life saver: virtually no fatigue and it lifted off 10 years long treatment resistant depression in the span of two weeks.
Also, CoQ10.
Have you noticed a benefit from any?
5-htp yes
Vitamin D3 yes but very subtle and over the course of a number of months of challenge, de-challenge and re-challenge, several years apart (I've been on D3 a long time).
The prescription drugs, absolutely.
The rest of them I really don't know. Main effects on my health at the moment are the consequences of being on mavenclad and waiting for those consequences to rectify themselves.
I hope you feel better soon
Thank you - and yes understand about the rest!
Simon do you know if I could bring Metformin back from Barcelona in October, without issue.
From personal experience I recommend you visit different farmacias in different areas of Barcelona on different days.
The ones in touristy areas might be worth trying as they're used to tourists turning up without prescriptions.
You need a farmacia, not a parafarmacia (overpriced food supplements and overpriced herbal remedies).
Travelling back and forth from Barcelona with a bunch of meds in your hold baggage was me, for years, until 2020.
You'll probably be fine. But make sure you have hold baggage, I wouldn't put them in you hand baggage.
How do people get hold of metformin?
Online Indian pharmacies. Look up Alldaychemist dot com. You might also get lucky with UK based ones if you lie.
I am on Tecfidera, and my neurologist told me to be careful about taking any other antioxidants.
I take iron and B12 because I don't eat meat, D3 because at diagnosis I was deficient (since retested and level fine on the 5000 IU I was prescribed), flaxseed oil, omega 3 from algae (though I do eat fish and shellfish), magnesium citrate (no more leg cramps!). I am also currently experimenting with Quercetin which I have heard may help repair myelin. I also heard it might help with hayfever but I have definitely not seen any improvement there! So may not bother with it for much longer.
Could there be negative side effects of taking LA, propionic and butyric acid at the same time? If one did regular blood tests for liver health etc could one take all three?
Yes, but you would need to monitor for adverse events.
Is monitoring done by blood tests (only)?
I’m not on any DMDs. Was never prescribed any.
I do take modafinil. I buy this myself as can’t persuade anyone GP or neuro. to prescribe it. It’s a life saver for me.
Also take alpha lipoic acid in the R form as understood it was better absorbed. And acetyl-l-carnitine, taurine.
I take co enzyme Q10 and magnesium and quite a selection of vitamins - D, K2, C, B complex, E (not every day). Also take probiotics and phophotydylserine, fish oil and flaxseed oil. Also oregano oil.
Can I ask how you buy Modafinil, please? I also love Modafinil. My current neurologist prescribes it for me, but my last one wouldn't, and if I ever get another neurologist who won't I'm going to have to try buy it...
Really don’t understand why some are happy to and others won’t. It’s frustrating. I’m glad some do and hope they continue to help their patients.
Modafinil's by far my favourite medication for symptoms. It's awful that some neurologists won't prescribe it to MS patients 🤕 My personal experience, is that in the UK it depends which NHS health trust the neurologist answers to. Basically, it comes down to money, as most things do, and a neurologist will only prescribe it if their health authority will pay for it. I need to look into whether one can get it on private prescription, should the need arise.
From an online place- I think it comes from Asia. Been using them for years.
Thank you! Could you tell me the name of it, please, or the URL? I'm afraid of ever losing access to Modafinil again 🤕
I'm sorry for my unhelpful response. If anyone managing this webspace can advise regarding PMs.....:(
I don't want to breach any rules - if there is a way to send a PM I would.
No this platform doesn't process PMs only comments that are open for the whole community to read.
Thank you Professor, I understand
It's okay! Don't worry about it. Thank you anyway 🩵
I hack as best as I can, though I found that metformin made fatigue worse and I couldn't get as much benefit from exercise as I hoped to. I thought exercise is probably more important than 'potential remyelination', so I stopped, and fatigue and progress got better again. In the biohacker community, there is also much talk about NAD precursors, and a 2022 Cell Metab paper, with 30 patients with Parkinson's disease, found that NR raised brain NAD levels: https://pubmed.ncbi.nlm.nih.gov/35235774/ There is a new trial by the same group in SPMS as well. I decided to try NR because it seems safe. Not noticing any effects, though. A problem when self-prescribing these chemicals is to know when you've tried long enough or if they're having a subtle effect that might be important later. That ALA paper reported effects after 2 years.
I wonder if these 'anti-aging' agents may have the best effect on individuals aged 45-50+ ? How many of those MSologists taking metformin were in their 30'ies?
Superdrug list Merformin. They also list side effects...anyone have any experience of sore stomach, nausea etc? Otherwise happy to try it
I used to be on tecfidera. It's not as bad as tecfidera. Not even in the same ballpark. The first few months are a little uncomfortable but you get used to it pretty soon and side effects definitely wear off.
*Metformin
Isn't Butyric Acid dangerous in context of driving EBV Lytic/Latent Cycling?
Not sure. Depending on where it is activated. It actually may boost immunity and counteract T-cell exhaustion.
https://www.sciencedirect.com/science/article/abs/pii/0304383580901032
https://vestnik.astu.org/temp/579cb4c456805a68187591f640244243.pdf
https://www.tandfonline.com/doi/pdf/10.1080/13880200600686491
https://pubmed.ncbi.nlm.nih.gov/11059774/
https://pubmed.ncbi.nlm.nih.gov/220786/
HHV6
https://pubmed.ncbi.nlm.nih.gov/9753061/
I have often thought what if we found a way to block EBV entry into cells post initial infection, then induce reactivation and lysis, while preventing disease progression through CD-20 antagonist (erroneous antibody production)?
1. Vaccination(pipeline) or Antiviral(preventing cell entry while allowing lytic reactivation)
2. Anti-CD20 Therapy preventing erroneous B-Cell antibody production, hopefully preventing disease progression post induction
3. (Induction)EBV lytic activation through butyric acid, hopefully causing non-cd20 cells that are infected to lyse.
4. EBV reinfection of new cells prevented through 1 & 2.
Is it possible that aHSCT is failing in some patients due to EBV not being completely wiped out in all cellular reservoirs? Could a protocol of one like above followed by aHSCT improve the outcomes of the aHSCT therapy by increasing the chances of EBV elimination?
Thanks for the suggestion! I have tried the Better You sprays, they still made the nausea worse, unfortunately. And I need calcium for osteopenia. I'm prescribed Evacal (callium carbonate/D3), but the side-effects are too bad so I can't take it. Alive's Tricalcium phosphate/D3 is the best I've found, but I'm not taking enough. I'm trying to slowly increase it 🤕
All meds go in the Hold luggage. Thanks for the tip.
I’ve tried replacing supplements with specific food. I have 2 Brazil Nuts for breakfast with 2 walnuts, a little yoghurt, and a few berries and pumpkin seeds I might then have 1 more BN later on. I was under the impression not to eat a lot. “You can add just one Brazil nut a day to your diet with a meal of your choice, but it would be recommended to not exceed more than three” Based on this I dropped magnesium supplements. Plus I couldn’t swallow them ! Like bullets. I eat as little prosessed as possible and try following Mediterranean diet.
I found this too about Brazil nuts. What are the 5 main health benefits of Brazil nuts?
1. Good for the brain
“Brazil nuts contain a polyphenol known as ellagic acid which has both antioxidant and anti-inflammatory properties that may offer neuroprotective and anti-depressant effects on the brain. Further research has shown that selenium is involved in supporting key brain signalling pathways such as GABA and dopamine signalling within the central nervous system, which is of particular importance in conditions such as Alzheimer's and Parkinson's disease.”
So I concluded better bio hacking from food as opposed to sups
I also try to have a teaspoon of Turmeric a day apparently it should be eaten with healthy fat/ oil for best results. There is research on this. Listen to Just 1 thing with Dr M Mosley.
I try to do 30 mins of seated exercise a day. I mix it up. I use the MS gym and a guy called Jacob Cino on You Tube for seated yoga. Mindfulness and meditation daily.
Dumped a mobility scooter to self propel shorter distances and a Mountain Trike that really raises my heart rate. 🤣
For a decade I’ve been doing most of these things. The good thing about lockdown a lot of exercises were put on You Tube, and included many seated options.
I take Oxybutinin when I go out. ( side effects from better meds)
Just started Tizanidine instead of diazepam for excruciating spasms that twist my feet. ( been through other anti spasmodic including Sativax )
Emergency meds for dizziness from Vestibular migraine.
I have 2 meals a day in a 4 hour window, usually starting around 2-3pm when I begin to feel hungry. I am in the 5th month. As a recovering carb addict it is freeing to not be tied to the constant hunger and fatigue circle, there is no postprandial somnolence after meals (carnivore) and until the weather warmed up, my energy was consistent through the day. Roll on autumn.
I take 1000iu D3, 400mg chelated magnesium and 22mg zinc picolinate. I take ALA and Co Q10 on and off but they're pricey.
There is a lot of variation in the info online regarding nutrients and I am not sure what the best information is. I also don't think enough is known about them in terms of mechanisms and whether taking them individually outside of a food source alters them. I imagine there must be cascades of activity in the chemical processes and that removing one part of that could deactivate the bioavailability somewhat or entirely.
One comment that I often see in the carnivore community is that they no longer get sunburn and The 5 Minute Vitamin D Talk by Dr Paul Mason is interesting.
I have a question, how important do you think it is that vitamin K is taken with D3?
I don't know about vitamin K. I will need to research it. It was only recommended for people who have fat malabsorption as it is one of the fat soluble vitamins.
I would also be interested in your research on vitamin K2. I'm taking some vitamin K2 for cardiovascular health (given my daily vitamin D-suppletion).
I've been somewhat curious about metformin (and statins) because many with MS are already taking those. I take omega 3, NAD, and glutathione on a regular basis. Occasionally, I take exogenous ketones (say when it's 90 degrees outside and I don't want to deal with heat issues), or magnesium and melatonin for sleep. I used clemastine for sleep several years ago and the drowsiness from a half dose lingered all morning.