Amelia:
Most likely Gary's fiber/stool softeners are making things worse. Many Americans do take fiber, but the wrong kind, bran. Bran is bark and is not meant to be digested in large quantities. Also abnormal, are stool softeners. This approach aims to try to deal with symptoms instead of the underlying cause, which is intestinal dysbiosis. Generally when people try to get symptomatic relief, their underlying condition worsens.
The gut must be dealt with appropriately, and aggressively. See my weblink for more information, and I'd be happy to talk with you or Gary further.
-Dave
I eliminated my post
craptactular
hey amelia, i don't take anything other than normal dietary fibre, but i have noticed my digestive system slowing down. my problems with yeast, though, are much older than any of this autonomic ... crap.
As some know, Gary has Devic's not MS. It is MSs evil twin sister. BUT the difference comes in how each are affected. In MS, lesions and axonal damage are the disability. In Devic's, spinal stenosis and axonal damage are the culprits. Gary's spine has much shrinkage from C2 - C7. That is what Devics does. But it cuts off the nerve conduction more severely, more quickly than MS. I am going into a busy spree at work, but Dave, I will check out your site.
Thanks beatms it is one of the approaches John and I took. His leaky gut is healed and with that I've noted his allergies have all APPEARED to disappear.It's hard for me to tell what came first as his heat intolerance has also disappeared as well as his eczema and fatigue oh and forgot restless leg. We started with eliminating allergens,intolerances and toxins to the best we could so of course diet played a huge part in that. John feels so far removed from MS he is actually tossing around the idea of giving up the copaxone. I never liked it to start with but that now has become the norm so is frightening contemplating change. He is still taking his vitamin D3 as well as all his other alternative's. I will also add his vision is improving in the eye he went blind in after optic neuritis. He now sees color as well as shapes and can also make out figures on TV and when I made him do his check while I was typing this for an up to date update he just noted he can make out fingers on the people and also color on the TV. One of these days maybe all the pieces will finally fall together. We just do our absolute best to preserve John's health. Thanks again
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
food stuff
melody that sounds awesome. what great progress! maybe when i go to the doc today i should ask about food sensitivity testing... it has been a long time... she's going to roll her eyes at my list lol!
-
TwistedHelix
- Family Elder
- Posts: 602
- Joined: Fri Mar 25, 2005 3:00 pm
- Location: Northamptonshire, England.
Hmm.... seem to have ruffled a few feathers there with my attempt at light banter with gwa. Perhaps if I can bore you with a little history of my personal experience of neurological illness, you might understand where I'm coming from.
First, my dad died when I was six months old leaving my mum to bring up three children on a pittance. When I was 14 she was diagnosed with MS, (this was around 1975, so that the diagnosis took years to confirm), and the struggle for her must have been intolerable. She married a man who also had MS, and from my observation I would guess that they both had PPMS because they both continued on a long, steady, unbroken decline. I was diagnosed with MS when I was 25 and have gone the same way so that now, with my 46th birthday tomorrow, I am virtually paralysed from the neck down with just some limited movement in my left-arm, (I'm writing this using a speech recognition software). My mum and step dad died within the last two years, and now my brother and niece have been diagnosed with Huntington's disease so I have a 50 per cent chance of going down with that, too .
Because I have no opportunities to leave my house, I tend to picture the other correspondents on this site as being in the same boat as me, that is: having been unable to move for years; being put to bed at night mentally screaming that I do not want to wake up in the morning; furious with the world when I find out that I have indeed woken up. Because I have such a preconception, it can come as a bit of a shock to me to be reading and agreeing with a post which states how terrible this disease is, and then discover that the poster is still able to work, walk, socialise and maintain at least some sort of life -- I'd happily kill to be able to do that, even in a limited way... and yes, I'd sing to the full moon if it was proven, objectively, to work.
But my real point is this: ever since mum became ill all those years ago, there has been a never-ending torrent of ideas, discoveries, breakthroughs and promising drugs which have all fallen by the wayside. But much, much worse has been the endless stream of "miracle cures" and snake-oil doctors who have found "the" answer. Well before the internet was even a glimmer in an electron's eye there were high profile reports that vegetarianism was the cure, raw food, micro nutrients, vitamin supplements, B12 injections, amino acids... the list is endless and some of the ideas are still around today. Does anyone remember the Cari Loder fiasco? It was a media frenzy because her discovery had worked wonders and completely reversed her MS. The regime consisted of tricyclic anti-depressants, B 12 injections, and Diet Coke. I was immediately suspicious because an awful lot of people with MS were taking all three substances and if it were so effective surely would have been stumbled upon long before. I strongly suspected she was experiencing euphoria because of the anti-depressants, and a coincidental remission -- the last I heard was that she had a relapse, and the story faded into obscurity, but not before many thousands of people had had their hopes raised unrealistically high and then cruelly dashed, including my mum and step dad.
I live in a country where cynicism is high and religious belief very low -- Britain -- beatms has posted on this site before and been criticised for doing so, (not by me), he has been asked not to post any more or for the administrators to block his posts, largely because he appears to have some kind of agenda and some of his posts come dangerously close to advertising or proselytising.
Cynicism is not the opposite of an open mind, instead it is an open mind with the Spam filter firmly switched to "on". I do not dismiss any well-founded ideas: indeed I have posted a couple of theories myself on how leaky gut might be implicated in MS; I find the beautifully researched posts on the involvement of insulin absolutely compelling, and the theories about intestinal worms very convincing. The alarm bells start to ring when the title of a thread keeps changing, the author has been banned from other ms forums, and the link contained in the first post takes you to different destinations, as happened with this one, (though, to be fair, that could simply have been a technical problem).
Yes, I AM tired, and depressed, and suicidal, and sceptical. In 32 years not one drug, not one diet, one regimen, one supplement has helped me or the ones I have loved. My cynicism leads me to think that those of you who have felt better by trying one thing or another, (as I have), may possibly have addressed a subsidiary issue. If you get rid of a low-grade infection, or eliminate a food to which you are intolerant, you will undoubtedly feel stronger, better, fitter and it may appear that your MS symptoms are reduced. It is a leap of faith, however, to think that you have directly affected this disease, (although of course, feeling better in any way is entirely a good thing) .
I'm going to stop now, because I think I could go on forever. If anyone has read this far, thank you very much for taking the time. I didn't mean to get anyone down or demolish anyone's hope -- in fact, you may be surprised to learn that I am entirely optimistic for those of you who are in the early, more benign stages of MS -- thanks to the amazing diligence of Bromley, Dignan, and all the other contributors, we are more fully aware than ever of all the work that is going on behind the scenes in the name of science, and on our behalf.
I shan't contribute to this site again, as I don't feel welcome. Anyway, every time I find an interesting article or piece of research, someone has usually been quicker off the mark than I am!
Love and good luck to all of you.
Dom.
First, my dad died when I was six months old leaving my mum to bring up three children on a pittance. When I was 14 she was diagnosed with MS, (this was around 1975, so that the diagnosis took years to confirm), and the struggle for her must have been intolerable. She married a man who also had MS, and from my observation I would guess that they both had PPMS because they both continued on a long, steady, unbroken decline. I was diagnosed with MS when I was 25 and have gone the same way so that now, with my 46th birthday tomorrow, I am virtually paralysed from the neck down with just some limited movement in my left-arm, (I'm writing this using a speech recognition software). My mum and step dad died within the last two years, and now my brother and niece have been diagnosed with Huntington's disease so I have a 50 per cent chance of going down with that, too .
Because I have no opportunities to leave my house, I tend to picture the other correspondents on this site as being in the same boat as me, that is: having been unable to move for years; being put to bed at night mentally screaming that I do not want to wake up in the morning; furious with the world when I find out that I have indeed woken up. Because I have such a preconception, it can come as a bit of a shock to me to be reading and agreeing with a post which states how terrible this disease is, and then discover that the poster is still able to work, walk, socialise and maintain at least some sort of life -- I'd happily kill to be able to do that, even in a limited way... and yes, I'd sing to the full moon if it was proven, objectively, to work.
But my real point is this: ever since mum became ill all those years ago, there has been a never-ending torrent of ideas, discoveries, breakthroughs and promising drugs which have all fallen by the wayside. But much, much worse has been the endless stream of "miracle cures" and snake-oil doctors who have found "the" answer. Well before the internet was even a glimmer in an electron's eye there were high profile reports that vegetarianism was the cure, raw food, micro nutrients, vitamin supplements, B12 injections, amino acids... the list is endless and some of the ideas are still around today. Does anyone remember the Cari Loder fiasco? It was a media frenzy because her discovery had worked wonders and completely reversed her MS. The regime consisted of tricyclic anti-depressants, B 12 injections, and Diet Coke. I was immediately suspicious because an awful lot of people with MS were taking all three substances and if it were so effective surely would have been stumbled upon long before. I strongly suspected she was experiencing euphoria because of the anti-depressants, and a coincidental remission -- the last I heard was that she had a relapse, and the story faded into obscurity, but not before many thousands of people had had their hopes raised unrealistically high and then cruelly dashed, including my mum and step dad.
I live in a country where cynicism is high and religious belief very low -- Britain -- beatms has posted on this site before and been criticised for doing so, (not by me), he has been asked not to post any more or for the administrators to block his posts, largely because he appears to have some kind of agenda and some of his posts come dangerously close to advertising or proselytising.
Cynicism is not the opposite of an open mind, instead it is an open mind with the Spam filter firmly switched to "on". I do not dismiss any well-founded ideas: indeed I have posted a couple of theories myself on how leaky gut might be implicated in MS; I find the beautifully researched posts on the involvement of insulin absolutely compelling, and the theories about intestinal worms very convincing. The alarm bells start to ring when the title of a thread keeps changing, the author has been banned from other ms forums, and the link contained in the first post takes you to different destinations, as happened with this one, (though, to be fair, that could simply have been a technical problem).
Yes, I AM tired, and depressed, and suicidal, and sceptical. In 32 years not one drug, not one diet, one regimen, one supplement has helped me or the ones I have loved. My cynicism leads me to think that those of you who have felt better by trying one thing or another, (as I have), may possibly have addressed a subsidiary issue. If you get rid of a low-grade infection, or eliminate a food to which you are intolerant, you will undoubtedly feel stronger, better, fitter and it may appear that your MS symptoms are reduced. It is a leap of faith, however, to think that you have directly affected this disease, (although of course, feeling better in any way is entirely a good thing) .
I'm going to stop now, because I think I could go on forever. If anyone has read this far, thank you very much for taking the time. I didn't mean to get anyone down or demolish anyone's hope -- in fact, you may be surprised to learn that I am entirely optimistic for those of you who are in the early, more benign stages of MS -- thanks to the amazing diligence of Bromley, Dignan, and all the other contributors, we are more fully aware than ever of all the work that is going on behind the scenes in the name of science, and on our behalf.
I shan't contribute to this site again, as I don't feel welcome. Anyway, every time I find an interesting article or piece of research, someone has usually been quicker off the mark than I am!
Love and good luck to all of you.
Dom.
TwistedHelix
TwistedHelix,
Please stay with the forum. The person that came on too strong does not have MS and has no clue what it is like to live with this disease for decades.
You are correct about beatms and I also have followed his banishment from many forums.
As far as "miracle cures", most of us have seen them all and have stopped being so gullible about any helping us. It is important for those of us with long periods of experience with MS to keep posting and help out the newbies as best that we can.
If you do not post, a lot of knowledge will be lost to the rest of us.
gwa
Please stay with the forum. The person that came on too strong does not have MS and has no clue what it is like to live with this disease for decades.
You are correct about beatms and I also have followed his banishment from many forums.
As far as "miracle cures", most of us have seen them all and have stopped being so gullible about any helping us. It is important for those of us with long periods of experience with MS to keep posting and help out the newbies as best that we can.
If you do not post, a lot of knowledge will be lost to the rest of us.
gwa
hope you stay helix your post was one that some of us need to read and put perspective on our own situations. i get a new wheelchair on friday and am really down that i am there. i read your post and feel so greatfull that i still have good use of my arms, they say that people in clinical trials are the heros and they are in a way but what u must go through every day makes u one two. thx for your words and if u do post again i will be sure to read.
hey everyone relax!
hey TW stay, stay. this is a good forum. everyone is welcome, sometimes it's bickery that's all, i overreacted to a teasing scenario when i was newer here too, i just didn't recognize it yet. i guess the printed word can easily go that way.
i'm sad that nothing has worked for you because in my case the actions i've taken seem to be helping quite a bit. but i'm in the early days.
anyway like i said, beat comes across strong but when you just read the published peer-reviewed research that he talks about... no startling revelations as you noted re: leaky gut, no crazy stuff. i doubt diet coke therapy made it into a journal, did it?
i'm sad that nothing has worked for you because in my case the actions i've taken seem to be helping quite a bit. but i'm in the early days.
anyway like i said, beat comes across strong but when you just read the published peer-reviewed research that he talks about... no startling revelations as you noted re: leaky gut, no crazy stuff. i doubt diet coke therapy made it into a journal, did it?
I remember the bee sting cure. Gary is allergic to bees and I got disgusted telling that to well meaning people OVER AND OVER AGAIN. Also, there was this person that rode horse back and was cured. Funny, Gary rode horse back at his job. But then again, Gary's is not MS, it's Devic's. Maybe that was the issue. I get really tired of well meaning people, close family a lot of times, that there is a cure found in the oddest place. I know that if it was so good, the medical community would have picked up on it eventually.
TwistedHelix--I would GLADLY live paralyzed from the top of my head to my toes...I would go stand in traffic until a truck smashed me if.....my beautiful, vibrant, full-of-life daughter could have a healthy life!
The fact that you have tried it all to no avail--and God, I am so sorry for that!--should not take away the hope of others who have NOT tried it all yet! Agree--we newcomers are the "idiot hopers". But we all have to travel this road the best that we can!
Last---please come back. We are all needed to help each other take this incredibly cruel journey!
The fact that you have tried it all to no avail--and God, I am so sorry for that!--should not take away the hope of others who have NOT tried it all yet! Agree--we newcomers are the "idiot hopers". But we all have to travel this road the best that we can!
Last---please come back. We are all needed to help each other take this incredibly cruel journey!
Dom
Great, keep it upTwistedHelix wrote:Hmm.... seem to have ruffled a few feathers there
However objective those of us who can walk, work, socialise etc are there's still a great big fat chunk of denial there too. The prospect of me being where you are scares me sh*tless. Me and others do need the reality check from time to time. keep it up!TwistedHelix wrote:... I tend to picture the other correspondents on this site as being in the same boat as me, that is: having been unable to move for years; being put to bed at night mentally screaming that I do not want to wake up in the morning; furious with the world when I find out that I have indeed woken up.
We had a discussion here a while back about the idea of a "false hope syndrome" induced by adverts promising a "ten year younger look" or a "two dress size slimmer figure". I suggested and still maintain that this idea is doubly applicable to us. (I got a lot of stick too btw about promoting the word syndrome. I kept posting, I hope you keep it up!)TwistedHelix wrote:But my real point is this: ever since mum became ill all those years ago, there has been a never-ending torrent of ideas, discoveries, breakthroughs and promising drugs which have all fallen by the wayside. But much, much worse has been the endless stream of "miracle cures" and snake-oil doctors who have found "the" answer.
I dont think there's any race! Anyway with your "MS and Bar" you've the experience and voice necessary to add a comment to anything posted. Keep it up!TwistedHelix wrote:Anyway, every time I find an interesting article or piece of research, someone has usually been quicker off the mark than I am!
That would be a pity I enjoy your contributions, keep them up !TwistedHelix wrote:I shan't contribute to this site again, ...
John
I am what I am
I am what I am
Natural Fiber Supplementation
Amelia:
One fiber I have used that I do think has been helpful is called Super Seed....It is not bran. It uses sprouted grains, especially high quantities of flax seed.
I think this contributes to healthier rising stools that may represent improved fecal clearance and cleansing.
As far as natural stool softeners go, people have had great success with Flax Seed Oil with lignans.
In general, flax seed and it's products promote healthy bowels. I know one woman that if she misses a day of her flax seed oil, she gets the nerve pain in her face, but with the oil she is symptom free.
Both of these things deal with underlying issues, and are very wholesome products....Probably a lot healthier than bran and stool softening syrup
Dave
One fiber I have used that I do think has been helpful is called Super Seed....It is not bran. It uses sprouted grains, especially high quantities of flax seed.
I think this contributes to healthier rising stools that may represent improved fecal clearance and cleansing.
As far as natural stool softeners go, people have had great success with Flax Seed Oil with lignans.
In general, flax seed and it's products promote healthy bowels. I know one woman that if she misses a day of her flax seed oil, she gets the nerve pain in her face, but with the oil she is symptom free.
Both of these things deal with underlying issues, and are very wholesome products....Probably a lot healthier than bran and stool softening syrup
Dave
DAve,
Gary has tried the flax seed capsules before, but we didn't watch for this type of "help". I'll get him back on them and watch. He took the Fiber Choice tablets. Before you said anything, we did notice that it allowed his stool to bulk up. With bad intestins, that is not good. It caused things to get way too big.
He had stopped taking this and went back to okay. Is naturally ocurring fiber, raisins, fruits, etc., okay? Or is this a problem as well.
Gary has tried the flax seed capsules before, but we didn't watch for this type of "help". I'll get him back on them and watch. He took the Fiber Choice tablets. Before you said anything, we did notice that it allowed his stool to bulk up. With bad intestins, that is not good. It caused things to get way too big.
He had stopped taking this and went back to okay. Is naturally ocurring fiber, raisins, fruits, etc., okay? Or is this a problem as well.Why leave we are all frustrated with MS. No I'm not in a wheel chair and no I don't have MS directly but yet I'm on this damn ride as John has MS. If we don't uncover every stone and look at it from every possible angle we short change ourselves. What works for one for awhile might not work for someone else at all. You have every right to be bitter and frightened. Don't run from the people who do understand that sometimes you are having a terrible day and all looks pretty bleak. We have all had those days. You'll likely understand that more than most. You can't demolish Hope it lives in ones heart.TwistedHelix wrote:
I'm going to stop now, because I think I could go on forever. If anyone has read this far, thank you very much for taking the time. I didn't mean to get anyone down or demolish anyone's hope -- in fact, you may be surprised to learn that I am entirely optimistic for those of you who are in the early, more benign stages of MS -- thanks to the amazing diligence of Bromley, Dignan, and all the other contributors, we are more fully aware than ever of all the work that is going on behind the scenes in the name of science, and on our behalf.
I shan't contribute to this site again, as I don't feel welcome. Anyway, every time I find an interesting article or piece of research, someone has usually been quicker off the mark than I am!
Love and good luck to all of you.
Dom.
Last edited by Melody on Wed Jan 17, 2007 5:17 pm, edited 1 time in total.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.