Anecdote's personal treatment regime

Tell us what you are using to treat your MS-- and how you are doing.

mais oui, monsieur

Postby BalsaBoy » Thu Apr 28, 2005 6:21 am

Merci beaucoup

Is it a possibility that if I stopped for a short period and then started again I could once again re-live those heady days?
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Postby SarahLonglands » Thu Apr 28, 2005 6:38 am

Keep on and those heady days will come back for good, but you will have a few mounains to climb first, I'm afraid! :wink:
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Mountains to climb

Postby BalsaBoy » Thu Apr 28, 2005 7:03 am

Until I find my dream, perhaps?
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good days, bad days?

Postby Notdoneyet » Thu Apr 28, 2005 8:21 am

I concur with Sarah. View the good days as signs of things to come.
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Postby HappyDaddy » Wed May 04, 2005 3:22 am

Hi Sarah,

I was just thinking of your mosquito bites (mainly a histamine H1 reaction) and therefore I was asking myself what you thought about the histamine theory explained on the following link http://www.edmsllc.com/research_layman.htm?

Best wishes
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Postby gibbledygook » Wed May 04, 2005 4:21 am

Interesting about histamine and histidine. My body is beginning to be awash with histamine owing to chronic hayfever from which I have suffered all my life.

As an aside I am very suspicious of "research" which fails to cross-reference any of its source material. The above link has no references to its statements and whilst the "facts" stated may have empirical evidence to substantiate the claims I am unable to cross-check. As a student I once fell into the same error and my essay was scored zero! And rightly so.

I also found the reasons for why MS sufferers don't appreciate the heat very far-fetched. Surely it's simply pre-existing damage to the CNS that causes a heightened awareness of the symptoms rather than an absence of H2 keys.


Mmm. Over to you, Sarah.
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Postby HappyDaddy » Wed May 04, 2005 4:45 am

Interesting that you have hay fever. Not? My father and sister have it too and my mother has asthma. Mmmm, maybe something in the family.

The following link has refrences: http://www.edmsllc.com/research_professional.htm


You also find a lot on pubmed, for example:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12167763 or
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=12576552

Best wishes,
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Postby gibbledygook » Wed May 04, 2005 5:17 am

10 out of 10 for references on latest link! Thank you!
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Postby SarahLonglands » Wed May 04, 2005 8:49 am

Yes, that's better. But to go back to the first link, since I had already started to give my views using this, but ignoring the locks and keyholes and pacmen:

I have always been much loved by mosquitoes and still am, but I think that my hyper-sensitivity to mosquito bites, now gone, dates from about the same time as my first MS symptoms, however, following on from that, I don't and never have had any food sensitivities or any other allergies that I can think of: well a slight allergy to grass pollen and rape seed blossom, but nothing severe.

I also can't say that I have ever been more adversely affected by extreme heat than anyone else. I am probably unusual here, but maybe it is because I drink so much water during the day, which doesn't give my brain a chance to dehydrate. I don't know about having a slightly lower body temperature because I have only ever had it tested when you would expect it to be up, not down.

The decreased H2 also causes the small diameter arteries to constrict (narrow), which contributes to the dry skin, cold feet and hands, and the common symptom of optic neuritis. Tiny blood vessels feed the optic nerve and constriction (narrowing) of these arteries can cause inadequate blood flow to the optic nerve, which can result in swelling and damage.

Nothing in this paragraph applies, since I have an oily rather than dry skin, cold feet only in cold weather, and no eye trouble at all, ever.

I'm not sure about REM sleep either, because although I have always woken up a lot, I have never felt as though I haven't had a good night's rest.

In fact, scrolling down a bit further, I have never suffered really debilitating fatigue, apart from a tendency to fall asleep in the evening, now all gone, and believe it or not, I have just sat here for ten minutes doing this:

This explains why it is common for MS patients to do a repetitive task like repeatedly touching their thumb to each one of their fingers easier and faster at first, but after a few repetitions these movements get slower and harder to perform until finally they can’t do the task at all. Then after waiting for a brief period of time they can do the task again once the H2 gets replenished.


Mad or what? Only because I was fed up with moving books around from one bookshelf to another. I had no trouble with this, or slacking off, but maybe eighteen months ago it would have been different.

H2 regulates the immune system. Increased H2 and the resultant increase in cyclic AMP boost the immune system especially the T-cells and B-cells. Research shows that the H2 levels control the receptor activity on these cells and that the H2 levels are decreased during an exacerbation or chronic progression of MS. Research also shows that MS patients have an abnormally low number of T-cells during an exacerbation. This directly contradicts the autoimmune theory, that the immune system, specifically the T-cells, are hyperactive and attacking the myelin. Instead, the immune system becomes suppressed in MS due to low levels of H2 and cyclic AMP.

I can't make up my mind about this, but kind of always thought that my response to he insect bites was due to an overactive immune response rather than a suppressed one.

Next paragraph down, I have never had heartburn and have no trouble digesting meat. As to whether I digest it properly, maybe that is why I am not at all overweight!

As for the risk factors, that has been covered and debated extensively, however, this makes no sense to me:

........................ why is it (MS) increasing so rapidly in the U.S. population (the NMSS states that an average of 200 new cases of MS are diagnosed per week in the U.S.)? Perhaps it is in part due to our diet of high carbohydrates and polyunsaturated fats like margarine, vegetable oils, etc and our trend to decrease the consumption of the saturated fats like butter and fats in red meat. High carbohydrate intake results in the body storing these excess carbohydrates in the form of triglycerides, which are just empty fat molecules...............


Sarah :?

PS: I hope you had a good time in Phuket, Alex. I liked your description of your boyfriend's glasses steaming up! :)
Last edited by SarahLonglands on Tue May 10, 2005 4:03 am, edited 1 time in total.
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question about antioxidents

Postby ljm » Sun May 08, 2005 4:53 pm

Sarah,

I have (obviously) been tracking your posts pretty diligently.

Regarding your supplements. You had mentioned alpha lipoic acid, as well as acetyl-L-carnitine.

I wanted to ask whether you had noted the research regarding Inosine and considered adding to your regime.

I don't know (yet) how to insert links in these messages. And I'm sure you've seen the references to the studies below. So you could pretty much ignore the rest of this message.

I called Dr. Spitsin at Thomas Jefferson University who has been investigating Inosine/MS for several years.

When I posed my usual question (is this something you would try if you had MS) he said absolutely. The risks are potential gout or kidney stones. He believes the risks are low and can be minimized by lots of water, careful on calcium supplements, serum testing if available.

The explanation for why Inosine could work is that peroxynitrite is a toxic product of free radicals nitric oxide and superoxide. Its thought that peroxynitrite is implicated in MS by causing CNS tissue injury and death

It is believed that uric acid protects the integrity of BBN and prevents entry of inflamed cells into CNS or, where the CNS is already compromised, directly scavenges peroxynitite to prevent its harmful impact

Uric acid cannot be taken effectively orally since its broken down in gut: thats why he's been looking at its precursor Inosine

A 2001 study that Spitsin was involved in showed clinical improvement in 3/11 subjects, and halting of progression in 8/11 subjects

He's currently involved in a new study of inosine sponsored by the National Center for Complementary and Alternative Medicine. But its taking longer than expected to report out because of difficulty enrolling sufficient participants (??is that common??)

Anyhow, I suspect you've seen all this but here are the past references to this line of study.
--------------------------------------------------------------------------------
Hooper DC, Spitsin S, Kean RB, Champion JM, Dickson GM, Chaudhry I, Koprowski H. Uric acid, a natural scavenger of peroxynitrite, in experimental allergic encephalomyelitis and multiple sclerosis. Proc Natl Acad Sci U S A. 1998 Jan 20;95(2):675-80.

Hooper DC, Scott GS, Zborek A, Mikheeva T, Kean RB, Koprowski H, Spitsin SV. Uric acid, a peroxynitrite scavenger, inhibits CNS inflammation, blood-CNS barrier permeability changes, and tissue damage in a mouse model of multiple sclerosis. FASEB J. 2000 Apr;14(5):691-8.

Koprowski H, Spitsin SV, Hooper DC. Prospects for the treatment of multiple sclerosis by raising serum levels of uric acid, a scavenger of peroxynitrite. Ann Neurol. 2001 Jan;49(1):139. No abstract available.

Spitsin S, Hooper DC, Leist T, Streletz LJ, Mikheeva T, Koprowskil H. Inactivation of peroxynitrite in multiple sclerosis patients after oral administration of inosine may suggest possible approaches to therapy of the disease. Mult Scler. 2001 Oct;7(5):313-9.
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Postby SarahLonglands » Mon May 09, 2005 5:38 am

Lizz,

Well, I had come across it but decided that what with everything else, it wasn't really necessary. It does sound quite interesting though, so maybe you should try it and see how you go!

Really, if the antibiotics are doing their job all I need are the collection of supplements I already take, and even those I have much cut down on from the amount at the beginning. Acetyl l-carnitine definitely helps ward off fatigue and alpha lipoic acid is a very potent antioxidant, which are the reasons I take them.

Sarah
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inosine supplement

Postby ljm » Wed May 11, 2005 9:25 am

Sarah,
I think what I'll do is (1) find out if I can get inosine imported into Canada and (2) find out if I can gt a uric acid test to support the theory that some people may have a deficiency. I was interested in the antioxident value. I'm also trying to get hold of Acetyl l-carnitine, it seems to be under ban in Canada. Lots of things that have some potential in abuse for body building seem to be under ban here, even if they have other positive theraputic uses
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Postby SarahLonglands » Wed May 11, 2005 11:09 am

I'm also trying to get hold of Acetyl l-carnitine, it seems to be under ban in Canada. Lots of things that have some potential in abuse for body building seem to be under ban here, even if they have other positive theraputic uses

Really? With regards to abuse by body builders, maybe l-carnitine I could understand at a pinch, but not acetyl l-carnitine. Does that mean you can't even import it from i-herb in the USA. I get it from them because it compares very favourably in price to what you can get in England, but that is partly due to the exchange rate, I guess.

Sarah
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Postby Notdoneyet » Wed May 11, 2005 8:00 pm

Hi LJM,
I didn't order any, but when I asked at Canada Safeway pharmacy if they carried Acetyl L-Carnitine, the pharmacist said she could order it. Did you try them?

Colin
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Postby Sharon » Thu May 12, 2005 7:22 am

You can buy acetyl-L-carnitine at Vitamin Cottages in the U.S. You could probably order online.

Hope this helps

Sharon
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