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Thread: Advice from across the Atlantic

  1. #1
    Forum Member john's Avatar
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    Advice from across the Atlantic

    Hi all,

    This has just been posted on alstdi by Jason who has worked very hard to stay alive. I am not sure if this will be beneficial to everybody but it certainly makes a lot of sense. I am not sure how easy it would be here to get anti-biotics and anti inflammatories but I will leave it to you.

    jchexpress
    Posted: Wednesday, July 17, 2013 1:55:54 PM
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    I decided to create a top ten list of things to do if you are diagnosed with or have ALS. My hope is that it will save you precious time from trial and error and lengthen your life as much as possible. You don't have to follow it to a tee, but I am still walking and talking five years after symptoms/dx so even if I can help one person it's worth posting it while I'm still alive. I am sure it's not perfect, but it's the best I could come up with to offer advice from my research and trial/error for a long time.

    The first thing on my list of things to do when dx is to obtain an antibiotic, anti-fungal medication and some type of anti-viral medication. I accomplished to obtain all three within a few months by going in complaining of various symptoms which coincided with each one and was written a prescription for each in that time period and took all three at separate times.

    My second goal was to obtain an autoimmune treatment asap after those because I had Grave's (thyroid disease), Hashimoto's Thyroiditis and an elevated antinuclear antibody (autoimmune related - something is or was attacking my own organs/tissues). I was put on Prednisone for some time to tame my immune system down.

    My third goal was to buy every lab test that Labs MD offered (or as many as I could afford which ended up being almost every one they offer because their prices are relatively reasonable) and correct as many as I could by either via medication(s) and/or supplements.

    Fourth, I tried everything I could to detox my body of anything toxic. This included detox supplements, eating veggies only and drinking distilled water for a few weeks along with taking a sauna every other day for a few weeks (I bought a one person sauna). I tried to do all of these things together to detox.

    Next up (fifth) was to determine a regular "ALS diet" and light exercise program that I could stick to as long as possible (swimming is best but if not an exercise bike would work). I figured my diet should be low in glutamate, carbs, gluten and sulfur... so I designed a diet to try and keep these at a minimum.

    Sixth, I had to decide on medications and supplements. Which ones do I take and which ones probably won't do me any good and just cost me money? I will tell you now to save you time after 5+ years that if I were diagnosed now, I would take the following supplements: a B complex, Magnesium Citrate, Vitamin E with Selenium, CoQ10, Fish Oil, Mitochondrial Basics (from lef), Cognitex (from lef), a quality fish oil (I now think it is better to have more dha than epa in the formula mixture), vitamin d, green tea, turmeric, ph drops (or minor doses of sodium chrorite) and melatonin at bedtime. This of course is not including any supplements that you may find you need from abnormal blood tests discovered. Other possible additions would include NAC (this was hard for me to take) and Taurine (still haven't worked this one into my daily regimen but I'm on the border of adding it). Medication wise I would recommend Elavil (benefits for this drug are too many to list), Neudexta (if your insurance will pay for it if not take 20-30mg of Dextromethorphan and 10mg of quinidine), Skelaxin (or the generic for muscle spasms and/or pain) and Klonopin (for anxiety and calming of the nervous system in general). This is in addition to any drug you find you may need from a lab abnormality. Vaporizing marijuana is another option if possible to obtain and you don't mind a minor legal risk in most states.

    Next up (or seventh) is to obtain and use a BiPAP at night early on. Period. This is extremely important IMO to protect the diaphragm as much as possible (and not make it work that hard all the time). Also, a possibility to consider is using a cough assist early on too. I am a firm believer that both of these if used early and when needed will greatly extend your life.

    Eighth I would get oxygen therapy during the day before your O2 levels fall. You don't have to wear it all the time but sporadically throughout the day is fine just to oxygenate your tissues. Be careful about this though in later stages because you wouldn't want to use O2 therapy if you can't exhale well (in this case you would want to use BiPAP sporadically or all the time during the day).

    Ninth, consider a feeding tube early on if you decide you will want one. You can still eat what you want but it's there for you if and when you need it and will keep the weight on you which is very important.

    Tenth, remember to record your voice saying as many words/sayings as possible. This will be invaluable if and when you can't speak as it can be transferred to a computer which will talk in your own voice instead of a robotic sounding one.

    Lastly, buy a colt 45 because at this point it's your only option (ok I'm kidding here... don't do that).

    Well, there you have it... my "secret to success". Actually, I don't think there should be any "secrets" to ALS when it comes to treatments and/or advice. That's why I put this together (for anyone who may have been just diagnosed or simply doesn't know where to start or what to do since ALS can run its course so fast).

    Another thing I forgot to mention which is important is to always be looking out for worthwhile clinical trials (at least ones which you think might be worthy to you based on a little research). Believe it or not, one of these times a clinical trial will be a big hit.

    Jason

    P.S. I'm sure I don't have all the things others use and/or do which benefit them with their ALS so if you have anything to add to the list, please do so. It just may extend a life.

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    Hi all,

    Thanks for your contribution John.

    The Association strongly advises that anyone seeking new treatment or supplements should always contact their neurologist, GP or a healthcare professional before doing so.

    Best wishes,

    Andrew

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    Forum Member Laila's Avatar
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    Hi John,

    I see no G&TS in this list? Or should it be southern comfort and orange? Laila

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    Forum Member john's Avatar
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    Hi Carol,

    I would suggest you take jack Daniels but possibly not too close to some of the medications. Hope you are keeping as well as can be expected.
    I post the list as I find it is amazing that the professionals tell you there is nothing can be done but the amateurs seem able to find therapies that work. It can't be just a coincidence that the long livers with this disease like Jason and Ray are the ones who also feel that a diet of supplements is extending their lives and slowing disease progression. You would think it would at least merit investigation by the medical profession . A trial of some of these and a little study of what is going on in patients bodies would cost peanuts for the NHS and the savings for society could be enormous.
    In the absence of that then people could talk it through with their GPs and if not harmful try somethings for themselves.

    John

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    Forum Member john's Avatar
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    Hi again Carol,
    Another one from across the pond the club might care to try.

    Wickford702
    Posted: Thursday, June 06, 2013 7:22:14 PM
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    For what it's worth I spend about $40 a month on vitamins and supplements. Aspirin, colostrum, mixed vit E, multi vit+minerals(no iron), B12 and D3. Diet is horrible, meals-on-wheels. Maybe cheap food is the answer. Most important, daily gin and tonic.
    Not being flippant but as a PALS of 20+ years. As Olly says, every case different. Dxd in 1993 by 6 ALS neuros. Have been on most ALS groups and chats since 1999.
    Really appreciate all the hard work that goes into this forum. Had to register to read now. Not a good move.
    Current status: Movement in all muscles, no walking, combing hair etc. Can eat, breathe and talk. Wish any of my experience would help at all.

    Barbara

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    As with all these talk to medical advisers first.

    John

  6. #6
    Forum Member Laila's Avatar
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    Seems like the case for daily G&TS is made. Purely medicinal of course

  7. #7
    Forum Member john's Avatar
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    If you are talking to medical advisers can I suggest you do it before the G & Ts!

    John

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    Hi John,

    It's good of you and Carol posting "links" but you'll both agree, we're needing results now.

    Time is the crucial element here, most of us haven't got it--waiting on years of testing, Etc.

    I come across "links" in my searches, and i'm tempted to post them, but don't.


    I agree with you, somehow, MNDA should set up some kind of Program to offer folk a range of supps,

    that are known to be taken by folk living with ALS/MND for say 4-5 yrs, without progression.

    MND Nurses can ask those folk of 4-5 years if they're on supps, or special diets, instead of

    wasting blooming time blowing in a tube, or being weighed--what good does both things do?

    She can't give something to avert wasting away,--that's the reason i don't see my Nurse,

    She couldn't tell me what course/speed, didn't inform of a way to stop it,--so no use to me.


    I don't know what it takes, or how to go about it,

    Insisting/making MND to carry out that program, make it the standard questions Nurses collect,

    Collate findings, set up a very small team in a corner of an existing Research Lab, dealing with

    supplement findings---let all the mice go, cos as long as they've got a hole in backside, they'll never find a cure.

    They've only produced the Placebo in the past 15 years or more, which had a very slight effect on mice.

    How does the Placebo work, or have any beneficial effect on person with a rapid progression?--a very costly NHS joke!!

    It is not scientifically possible to prove it works, no two are the same, speed/course.

    Research must carry on, continue their coarse in their "own sweet time"--keeps them in jobs.

    But Research must allocate time/staff to pursue alternative routes of possible treatments, with supplements

    what do you think?

    Ray

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    Forum Member john's Avatar
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    Hi Ray,

    It seems to me that people like you and Jason above and Barbara, a guy calls himself David J on alstdi and also Stephen Hawking who Roy posted a list of vitamins for have certainly got something to learn from. Unless it is a commercially exploitable drug no one wants to look or listen or learn. In 140 years researchers have produced one pill which may slow progression. No mouse trial has produced a viable drug. Time and time again money spent on trials on mice that work that on humans don't. A two year old learns that banging their heads against a brick wall is painful and pointless yet the researchers say it is all they have got. Which terminally ill person would not be only too glad to try something that might work. The sad thing is that just as possible drugs tested on mice fail it is probable that there are things tested on mice which are abandoned because of their failure at the mouse stage which could well work on humans but instead they are discarded. Tragic but why can't they see the folly of continuing the present course?

    If mnda are rethinking priorities then a brainstorming session to come up with a new approach to research would be high on my list of things to do.Take a long look at some of these supplements that appear beneficial rather than dismiss them, investigate them , work out what they are doing and why and see if you can improve on them and give a cure rather than a slowed progression. Having said that most would go with the slowed progression. Let the system try and help the diagnosed find a protocol that works for them. If there are 500 new cases a year that is 1.5 per day roughly. Is it asking too much that each of them be given a little time and resource instead of the present futile system that will cure no one?

    John

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    Hi John,

    It's true, Drug Company Research aren't interested in already Researched Supplements--no profit there.

    Andrew wants folk to help set up MNDA priorities--so this idea should be put forward/proposed/ and accepted.


    MNDA fund Research don't they, they waste good money, generously given/earned by raising funds.

    They can allocate some money towards "Supplement Research"---MND don't have to make a profit doing so.

    They're already paying the Labs and staff, Nurses collating info--so no costs so far.


    The "Brains" in the Labs just have to see a correlation between supps taken over a wide range.

    Then give folk a chance, and hope, maybe take them over a 12 month period.

    MRI/EMG them at point of commencement, do tests after 12 months--that'll be better than Micky Mouse Trials.

    The NHS is quite happy forking-out 10 per day on a Placebo,--MNDA might get some cash from Government, if it saves money.


    Some of the supps will pop up more often, like Glutathione, Q10, Selenium, Etc--it's what goes with them that matters.

    It's not what you take,.......it's what your body absorbs.


    This is an important fact, which does apply to supplements

    When Aids was running amok, they had to do something quick--it was costing Authorities a fortune, beds, Etc.

    They came up with a "cocktail" of drugs to cure it, not one.

    All supps i take have been individually Researched and proven to be individually beneficial to the body.

    They all do their individual job, but when they're used collectively, they're powerful, AND safe.


    All MNDA Supplement Research would have to do is assess individual items, and work out what's best, or likely to be effective.

    Research will not dispute the two most important supplements to the body,

    I've posted the Glutathione one earlier, here's the other one, which must be Liposomal form.

    Ignore the products.....it's just a very simple explanation of CoQ10 (Ubiquinol)

    http://www.advancedbionutritionals.c...inol-CoQ10.htm

    You know i don't like posting blooming links,

    Best wishes,

    Ray

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