Old 10-08-2018, 06:49 PM #1 (permalink)
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Default Any magical Safe Cures out there ?

Hi and low I have searched on all thees forums and more looking for some magical safe staller or Cure, I have a huge list of supplements mostly herbals I have tried in many combinations but alas not as yet, I will list all my tries. I have had Nettle in my head for years and Teasel I knew not why ? Then this fast moving predator caught me in November just last year and has been relentless in its fast grip Nettle and Teasel have been tried and I have a Nettle tea every day with Honey no quite working yet ? My list below any positive comments welcome. I wish and dream for some magical cure or miracle for us all in this same club and most especially for those moving down so fast we count our time by days not months or years.
Nettle Tea +White Peony leaf Tea and Green tea + peppermint Tea, Earl grey Tea, Honey, Bio Yogurt
Drinks, ( Coconut Oil, E V Olive Oil & Butter for cooking), I take supplements in 4's so x 4 a day or usually 3 x 4 or occasionally 4 or 5 x 4 Then bedtime 4 or more. Dry cough syrup when required.
Vitamin C effervescence 1000mg, Multi V effervescent, Distilled smart water and a shot of AppleCiderV and Amaretto, Daily magic juice ha.
CBD Oil 20%+ 4 x 0.25ml. ( Chilling )

Cod liver Oil 1000mg ( Vit A and D )
Vitamin B Complex
Vitamin E complex
ALA 300mg

TMG 1000mg
NAC 600mg
Selenium 200 mcg
Milk Thistle 8500mg

Curcumin complex 800mg
Bioperine 10mg
Cayenne Plus ( Cayenne pepper 450mg, Ginger 210mg, Hawthorn 210mg )
Nicotinamide B3 500mg

Rosemary 400mg
Burdock root 460mg
PEA ( Palmitoylethanolamide ) 400mg
Teasel root 500mg

Creatine 3500mg
Taurine 500mg
L- theanine 200mg
Beta Glucan 250mg

Calcium, magnesium, Zinc ( C carbonate 1000mg, M Oxide 400mg, Z sulfate 15mg )
Iodine Kelp 225mg
Gotu kola 420mg
Zinc Gluconate 50mg

Aspirin 150mg
Ibuprofen 200mg
Paracetamol 500mg
Super Cinnamon Complex w/ Chromium & Biotin.

Wild Copper 2mg
Licorice Root 450mg
Bacopa Monnieri 500mg
Andrographis paniculata 400mg

Milk thistle 1000mg Dandelion 350mg yellow Dock 350mg Beet Root100mg Combo.
Prostaid. Saw palmetto 544mg Pygeum Bark 454mg Nettle 255mg
Jai Wei Xiao Yao Wan ( Happy Pills )
Horny Goat Weed Complex 500mg

Bedtime. selection.

Magnolia bark 400mg
Lions Mane 500mg
Valarian Root 1200mg
Melatonin 12mg
Lithium Orate 5mg
Herbal Laxative Complex ( Cascara 75mg, Senna 438mg + 465mg Blend inc licorice root, Fennel Seeds and Liva Ursi leaves )
Peace all. TIANDB.
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Old 10-09-2018, 09:29 AM #2 (permalink)
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Default Re: Any magical Safe Cures out there ?

There is really nothing out there in the way of a cure, even the pharma stuff is of questionable benefit. If anyone tells you otherwise, hold on to your wallet. I was diagnosed 4 years ago and can still walk, talk and carve oak. I use a bipap overnight and I have a g-tube I use for medications only. My secret protocol? Bourbon and bad choices! I also have a devotion to St. Jean de Brebeuf and St Kateri. I also have lots of people praying for me. I believe I stand today because of prayer. Is that what's working, or is it the Bourbon. Who Knows? But I'm not giving either up!
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Old 10-09-2018, 12:17 PM #3 (permalink)
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Default Re: Any magical Safe Cures out there ?

I'd recommend taking the Riluzole right now if you aren't already and doing the night time bi-pap as soon as you qualify according to your doctor. I started feeling so much better as soon as I did. Also, for all these supplements you can find a lot of great empirical data on the website alsuntangled.com. Good luck!
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Old 10-09-2018, 01:35 PM #4 (permalink)
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Default Re: Any magical Safe Cures out there ?

I'm forever changing my supplement protocol based on new information. Two things I will never remove are curcumin (I take two separate brands) and medical cannabis (very high doses of CBD and tiny doses of THC.)

I declined Riluzole three years ago. If I had taken it I would have added Tudca and/or Milk Thistle to protect my liver.

Some of my other "staples":

Resveratrol, Gluzin (the type of zinc they use to treat Wilson's disease), CoQ10, Ubiquinol, Vitamin D, Vitamin B-12, krill oil, fish oil, chromium, selenium, two types of magnesium (1,200 mg a day), iodine, probiotics, Niacin, green tea extract, Vitamin C and Iron (only because I have a severe deficiency.)

This week I'm starting back on glutathione, milk thistle, and a whole food multi-vitamin.

I make a shake each day with organic blueberries, organic cocoa, coconut milk, and organic greens. I add a cup of organic Greek Yogurt, throw it in the Vitamix and it tastes like a milkshake. I'm going to start adding a tablespoon of MCT oil to it today.

I sleep better when I eat in an 8- hour window which usually starts around 10 am.

I have a ton of people praying for me, Vincent. I will never give that up, for sure.

TIANDB: Check out Jason's FUZE protocol over on ALSTDI's board, if you haven't already.
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Old 10-09-2018, 02:58 PM #5 (permalink)
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Default Re: Any magical Safe Cures out there ?

As Vincent says, it's your money, but for the record a lot of these long laundry lists' components cancel each other out, or intensify the effects (such as dizziness, sedation, bleeding risk) because they are similar.

And you burn a lot of energy metabolizing this stuff, that then is not available for breathing, digestion and what-not.

So like a zero-based budget, I would look closely at "reason to believe" beyond general health, and at interactions also in building a list.
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Old 10-09-2018, 03:47 PM #6 (permalink)
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Default Re: Any magical Safe Cures out there ?

One of my doctors expressed amazement that folks with MND were not being told to take NAC as a matter of course- at least at my clinic, not sure about elsewhere. I take a relatively high dose- and have been doing so since early 2015- as a result of his recommendation. He indicated high doses were used routinely for those in his practice (military personnel) exposed to concussive injuries in order to reduce brain inflammation due to trauma. Not a miracle cure, but my goal is to slow/reduce neuroinflammation as much as possible.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3989181/
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Old 10-09-2018, 05:32 PM #7 (permalink)
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Default Re: Any magical Safe Cures out there ?

Quote:
Originally Posted by lgelb View Post
As Vincent says, it's your money, but for the record a lot of these long laundry lists' components cancel each other out, or intensify the effects (such as dizziness, sedation, bleeding risk) because they are similar.

And you burn a lot of energy metabolizing this stuff, that then is not available for breathing, digestion and what-not.

So like a zero-based budget, I would look closely at "reason to believe" beyond general health, and at interactions also in building a list.
Hi Laurie, My long list started before my diagnosis in June 2018 all checked out so no conflicts unless you can point one out ? Anti inflammation, Anti Oxidants, Repair , General health and good sleep were my headers. Never had any contra indications or side effects, a certain positive in that I was trying something was most definitely achieved. No speeding of my symptoms with the very slippery slope I have been on since first noticing things were amiss in November of 2017. All my supplements mostly herbals were from ALS forums or similar where others had used with no side effects or negatives. I have no prescription medications on that list I try to avoid them, The cost's spread over a few months were minimal . Like I said I will take in 4s not quite as listed above but roughly.
I experimented in early days with sticking to one in higher safe doses for a few days to see if I could slow my progress, no I could not but no ill effects either. I have stopped taking the PEA ( Palmitoylethanolamide ) 400mg as after the 4 day testing I thought it had definitely no positive effect for me and it was one questionable more expensive purchase.
I know to take the Zinc Gluconate if I take it after a meal as it causes a slight quezy feeling if taken on an empty stomach.
I take less now since August maybe only one or two 4s and bedtime 4 or sometimes more. Vitamin D I take more of because I have not left my apartment for the last few months and my Doctor says I am low after recent blood tests. I try to last longer without the desire for any trach or tube feeding if I can avoid it as no joy will be found for that with me. We are all different some will surrender to the doctors orders or wifey's orders not me I can go tomorrow with no regrets at my trying safely outside the box. Peace TIANDB
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Old 10-09-2018, 05:37 PM #8 (permalink)
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Default Re: Any magical Safe Cures out there ?

Fiona,

I did NAC for a year and then it started upsetting my stomach. Most people on a supplement protocol do take NAC and my neurologist also recommended it.

I also think it's important to get vitamin and mineral levels measured before you start supplementing and, if it's affordable, every six months along with routine blood work and anything else you or your doctor believes is necessary. Had my free copper not been high, I wouldn't have added Gluzin. Apparently, my relatives all have low Vitamin D and low Iron.

I do know that Gluzin brought my free copper back into the normal range and iodine corrected my high TSH (twice.) Just recently it went high again so I'm back on iodine.
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Old 10-09-2018, 06:20 PM #9 (permalink)
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Default Re: Any magical Safe Cures out there ?

Well, it would take hours to parse your list for interactions, but just as an example, you have several agents that "thin the blood," including but not limited to Vitamin E, Vitamin C, cayenne, ginger, aspirin, ibuprofen, paracetamol (acetaminophen), cinnamon (if cassia rather than zeylanicum, usually the case since it's a cheaper ingredient), licorice, curcumin. An INR that is too high can lead to bloody urine, GI or brain bleeds, and/or excess bleeding from any trauma.
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Old 10-09-2018, 06:39 PM #10 (permalink)
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Default Re: Any magical Safe Cures out there ?

Well, I do take Vitamin C and Vitamin E daily, the others mentioned not every day. My blood tests showed as perfect and no blood in urine or no headaches of any kind no bleeds from an Injection I take twice weekly so thanks for you knowledge anyway I will keep it in mind.. I will remain positive whatever. Peace TIANDB
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Old 10-09-2018, 07:25 PM #11 (permalink)
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Default Re: Any magical Safe Cures out there ?

What no chance to edit ? After whoever holding before ok to post ? I wanted to add Only one Ibuprofen tablet only one Paracetamol and a half a standard aspirin is not going to cause any blood thinning taken maybe twice a week before a loo call Ha I have to laugh or I would cry at the negativity of some. I have fast progressing ALS not the steady or slow or pausing version.. Jeez Louise.. Peace whatever TIANDB.
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Old 10-09-2018, 07:52 PM #12 (permalink)
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Default Re: Any magical Safe Cures out there ?

sadly the short answer to the question in the thread title is NO.

We wouldn't be here, and would be shouting it from the rooftops if there were

lots of great replies on helpful supplementations that some find useful though
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Old 10-15-2018, 04:50 PM #13 (permalink)
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Default Re: Any magical Safe Cures out there ?

In re combining supplements/drugs that thin the blood, note the number of bleeds annually attributable to oral anti-coagulation (OAC), which is what these supplement combinations, TIANB, represent to varying extents:

Annual bleeding rates during OAC range from 2% to 5% for major bleeding, 0.5% to 1% for fatal bleeding, and 0.2% to 0.4% for intracranial bleeding. So this is saying of 100 people on these drugs, in a given year, one will die from a bleed. And most of these will be medically monitored, to be on these drugs to begin with. Not to mention that as a whole they probably suffer less trauma than PALS.

You can call this "negativity," but disclosing risks that might not be obvious is part of what we do here. I could also point out that your pulsed dosing given the half-life of these compounds is only increasing risk to no possible benefit.
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Old 10-15-2018, 08:34 PM #14 (permalink)
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Default Re: Any magical Safe Cures out there ?

Hi Laurie as I have already typed ( I wanted to add Only one Ibuprofen tablet only one Paracetamol and a half a standard aspirin is not going to cause any blood thinning taken maybe twice a week before a loo call Ha I have to laugh or I would cry ) I would think no problems with a brain bleed and maybe not just negative but add over dramatic in your replies especially to ***4 users it seems. Bee in bonnet maybe ? Us that have this fast pace slippy slope just want a bit of positive from somewhere with no time for negative, you must realise we have quite enough of that with our condition. Shalom.. TIANDB
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Old 10-15-2018, 11:41 PM #15 (permalink)
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Default Re: Any magical Safe Cures out there ?

TIANDB, I see nothing negative or "bee in bonnet" in Laurie's reply. She's giving good clinical data there to help you and others make informed decisions.
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Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

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