herbals
- CureOrBust
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Arti, is the RLS unbearable during both the day and night?
If its mainly at night, I was thinking that a strong muscle relaxant may "bypass" the random signals your CNS is sending. Its a crazy idea, but I just thought of Hollywood and how they depict them (think Michelle Pfeiffer in "What lies beneath", or do I just like thinking about Michelle....)
Anyway,
http://en.wikipedia.org/wiki/Muscle_relaxant
http://en.wikipedia.org/wiki/Dantrolene (for Non CNS)
http://www.msinfowiki.ca/index.php?title=Dantrolene
hmmm, that last one didn't want to go as a URL.
If its mainly at night, I was thinking that a strong muscle relaxant may "bypass" the random signals your CNS is sending. Its a crazy idea, but I just thought of Hollywood and how they depict them (think Michelle Pfeiffer in "What lies beneath", or do I just like thinking about Michelle....)
Anyway,
http://en.wikipedia.org/wiki/Muscle_relaxant
http://en.wikipedia.org/wiki/Dantrolene (for Non CNS)
http://www.msinfowiki.ca/index.php?title=Dantrolene
hmmm, that last one didn't want to go as a URL.
Hi chearleader,
in the trial we get 800 mg.
I know, I shouldn´t recommend this high dose because people shouldn´t experiment too much on their own..but I think EGCG isn´t too dangerous although there can be problems with your liver (rare) it says in my papers.
If you buy the pills in the internet, they should contain as much EGCG as possible (my pills have 95%)
I have been taking it for 9 months (before that I drank tons of geen tea).
So for the last year I´ve had no relapses and no side effects.
The trial will last 15 months (at the moment)
Good luck!
in the trial we get 800 mg.
I know, I shouldn´t recommend this high dose because people shouldn´t experiment too much on their own..but I think EGCG isn´t too dangerous although there can be problems with your liver (rare) it says in my papers.
If you buy the pills in the internet, they should contain as much EGCG as possible (my pills have 95%)
I have been taking it for 9 months (before that I drank tons of geen tea).
So for the last year I´ve had no relapses and no side effects.
The trial will last 15 months (at the moment)
Good luck!
ursula
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CureOrBust wrote:Arti, is the RLS unbearable during both the day and night?
If its mainly at night, I was thinking that a strong muscle relaxant may "bypass" the random signals your CNS is sending. Its a crazy idea, but I just thought of Hollywood and how they depict them (think Michelle Pfeiffer in "What lies beneath", or do I just like thinking about Michelle....)
Anyway,
http://en.wikipedia.org/wiki/Muscle_relaxant
http://en.wikipedia.org/wiki/Dantrolene (for Non CNS)
http://www.msinfowiki.ca/index.php?title=Dantrolene
hmmm, that last one didn't want to go as a URL.
My RLS is pretty much an all day, all night affair.
And as for M.P. , she is a babe, SHWANG!!!!!!!!!!

Ursula,thanks for sharing your experience with the forum,that's very good news!
Just had a look at several green tea extract products,EGCG concentration in most of them can be anything from 10% to 50%.
Looking for the high-concentration EGCG tablets Ursula mentions are used in the trial, i found a product called Teavigo sold on i-herb and another one from a company called Tayio,both with a 90% concentration.
http://www.iherb.com/ProductDetails.asp ... 1AodKgmOFA
Does anyone know if there is a perceived benefit in getting EGCG from high-concentration tablets rather than from the ones that are more widely available?
Just had a look at several green tea extract products,EGCG concentration in most of them can be anything from 10% to 50%.
Looking for the high-concentration EGCG tablets Ursula mentions are used in the trial, i found a product called Teavigo sold on i-herb and another one from a company called Tayio,both with a 90% concentration.
http://www.iherb.com/ProductDetails.asp ... 1AodKgmOFA
Does anyone know if there is a perceived benefit in getting EGCG from high-concentration tablets rather than from the ones that are more widely available?
- CureOrBust
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elly, I am also in Australia, and have no issues with delivery from iHerb
They have a "Source Naturals" product that has 700mg (for two tablets) "EGCG (epigallocatechin gallate) (from green tea)".
http://www.iherb.com/ProductDetails.asp ... 10841&at=0
They have a "Source Naturals" product that has 700mg (for two tablets) "EGCG (epigallocatechin gallate) (from green tea)".
http://www.iherb.com/ProductDetails.asp ... 10841&at=0
Well, isaria sinclairii,(not iscaria !) is not exactly a plant. it is a microscopic fungus. And it does not produce fingolimod and myriocin. Nor efficiently, at least. The right fungus is called Mycelia sterilia , see here:
http://www.fermentek.co.il/myriocin.htm
http://www.fermentek.co.il/myriocin.htm
- gibbledygook
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From wikipedia today (7/10/08):
I believe sphingolipids play a part in MSFrom Wikipedia, the free encyclopedia
Jump to: navigation, search
Myriocin
Identifiers
CAS number [35891-70-4]
Properties
Molecular formula C21H39NO6
Molar mass 401.54 g/mol
Except where noted otherwise, data are given for
materials in their standard state
(at 25 °C, 100 kPa)
Infobox references
Myriocin, also known as Antibiotic ISP-1, Thermozymocidin, is an atypic amino acid, an antibiotic derived from certain thermophilic fungi. Among the producing strains are Mycelia sterilia[1]and Isaria sinclairii.
Myriocin is a very potent inhibitor of serine palmitoyltransferase, the first step in sphingosine biosynthesis[2]. Due to this property, it is used in biochemical research as a tool for depleting cells of sphingolipids.
Myriocin was shown to inhibit the proliferation of an IL-2-dependent mouse cytotoxic T cell line.
Myriocin possesses immunosuppressant activity. It is reported to be 10 to 100 fold more potent than cyclosporin.
link1: Expert Opin Investig Drugs. 2007 Mar;16(3):283-9. Links
FTY720, an immunomodulatory sphingolipid mimetic: translation of a novel mechanism into clinical benefit in multiple sclerosis.Baumruker T, Billich A, Brinkmann V.
Novartis Institutes for BioMedical Research, Autoimmunity & Transplantation, Brunner Strasse 59, A-1235 Vienna, Austria. thomas.baumruker@novartis.com
FTY720 (fingolimod; 2-amino-2[2-(4-octylphenyl)ethyl]-1,3-propanediol, Novartis) is the prototype of a new generation of immunomodulators. The drug is the result of extensive chemical derivatisation based on the natural product myriocin, isolated from the ascomycete Isaria sinclairii. FTY720 bears structural similarity to sphingosine, a naturally occurring sphingolipid. As with sphingosine, FTY720 is effectively phosphorylated by sphingosine kinases in vivo and the phosphorylated drug targets G-protein-coupled receptors for sphingosine-1-phosphate (S1P). Gene deletion and reverse pharmacology studies have shown that FTY720 acts at S1P1 receptors on lymphocytes and the endothelium, thereby inhibiting the egress of T- and B cells from secondary lymphoid organs into the blood and their recirculation to inflamed tissues. Animal studies suggest that this novel mechanism translates into effective treatments for several autoimmune diseases and a recently completed Phase II clinical trial highlighted FTY720 as a potential therapy for relapsing-remitting multiple sclerosis.
PMID: 17302523 [PubMed - indexed for MEDLINE]
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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- gibbledygook
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Hi Gainsbourg,
I have been enjoying quite a wild experiment with the salvia. When I increased the dose of salvia to 10.8g I experienced a major reduction in night pain, an improvement in walking and bladder control. About a week later I increased the dose to 14.2grams daily. However I then started to notice a pain in the kidney area and greater difficulty walking, more night spasms etc. So I have now halved the dose to 7.2g. When I halved the dose within hours I experienced an improvement in spasticity and walking ability. I'm still not sure what the optimum dose is but it's definitely lower than 14.2g.
I have been enjoying quite a wild experiment with the salvia. When I increased the dose of salvia to 10.8g I experienced a major reduction in night pain, an improvement in walking and bladder control. About a week later I increased the dose to 14.2grams daily. However I then started to notice a pain in the kidney area and greater difficulty walking, more night spasms etc. So I have now halved the dose to 7.2g. When I halved the dose within hours I experienced an improvement in spasticity and walking ability. I'm still not sure what the optimum dose is but it's definitely lower than 14.2g.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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- gibbledygook
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I expect they don't recommend more than one or two pills a day as well but without experimentation I won't know anything about the drug. For instance when I started taking the salvia at 9 pills a day which amounted to 5.4g a day I didn't notice anything. When I doubled that amount to 10.8g a day I really noticed an improvement in 24hours. Thus was I able to determine that it is effective! However I suspect that prolonged high dosage use is bad especially after my 14g experience.
Last night on 7.2grams per day I had no pain in my legs at night! But I had a few spasms which were easily dealt with by extra curcumin. Today I shall go back to 5.4g and see if there are spasms.
When I woke up this am my leg was back to being stiff but after an hour of taking salvia the stiffness is improving. This may be coincidence but that first day and following weeks on the 10.8g of salvia makes me think otherwise.
I wonder whether I should go off the salvia altogether for a month and then resume like the company says. After all I noticed nothing on 5.4g when I first started taking it. Mmm. Interesting.
Last night on 7.2grams per day I had no pain in my legs at night! But I had a few spasms which were easily dealt with by extra curcumin. Today I shall go back to 5.4g and see if there are spasms.
When I woke up this am my leg was back to being stiff but after an hour of taking salvia the stiffness is improving. This may be coincidence but that first day and following weeks on the 10.8g of salvia makes me think otherwise.
I wonder whether I should go off the salvia altogether for a month and then resume like the company says. After all I noticed nothing on 5.4g when I first started taking it. Mmm. Interesting.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
gibbledygook -
Are you aware of the hallucinogenic effect of salvia? A few months ago I had read an article about teens using salvia as a drug. Below is a link to one article - if you google "salvia teenagers" you will get more hits. Just thought this might be of interest to you.
http://www.npr.org/templates/story/stor ... Id=5290545
Sharon
Are you aware of the hallucinogenic effect of salvia? A few months ago I had read an article about teens using salvia as a drug. Below is a link to one article - if you google "salvia teenagers" you will get more hits. Just thought this might be of interest to you.
http://www.npr.org/templates/story/stor ... Id=5290545
Sharon
Re: Salvia
It looks like that may be a different species, i.e., Salvia miltiorrhiza vs. Salvia divinorum.Are you aware of the hallucinogenic effect of salvia? A few months ago I had read an article about teens using salvia as a drug. Below is a link to one article - if you google "salvia teenagers" you will get more hits. Just thought this might be of interest to you.
NHE
- gibbledygook
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Yes, alas there have been no hallucinogenic effects from salvia miltiorrhiza. Only effects on the MS vasculature!
So I have been trying a combination of salvia and gingko biloba which seems a good combination. I am now taking 3.6g of salvia and 3.6g of gingko daily. Both of these herbs have vasodilatory effects but I would guess that salvia is more of an endothelin 1 inhibitor whilst gingko is more of a vascular endothelial growth factor inhibitor. Both of which we want to lower. My last 2 days experience on these both has been good and the tingling/deteriorations which I noticed on high dose (14g) salvia have been significantly reduced. There is definitely something about these herbs which is important in MS. Getting the right dose is going to be an awkward journey. But I think it will be worthwhile. I think maybe my going on high dose salvia means I now only need rather a small maintenance amount. Looking at pubmed it seems that herbs often have one effect at a low dose and opposite effect on a high dose. So, somewhat confusing, but hobbling my way to improvements. For example, this morning, I took my herbs at 8:30 am and was fine until a short walk around 11:45am when the tingling returned. So I took some more herbs and about now the tingling has gone right down even though I have just done another short walk to test the improvement. (Walking tends to produce tingling in my left leg).
So I have been trying a combination of salvia and gingko biloba which seems a good combination. I am now taking 3.6g of salvia and 3.6g of gingko daily. Both of these herbs have vasodilatory effects but I would guess that salvia is more of an endothelin 1 inhibitor whilst gingko is more of a vascular endothelial growth factor inhibitor. Both of which we want to lower. My last 2 days experience on these both has been good and the tingling/deteriorations which I noticed on high dose (14g) salvia have been significantly reduced. There is definitely something about these herbs which is important in MS. Getting the right dose is going to be an awkward journey. But I think it will be worthwhile. I think maybe my going on high dose salvia means I now only need rather a small maintenance amount. Looking at pubmed it seems that herbs often have one effect at a low dose and opposite effect on a high dose. So, somewhat confusing, but hobbling my way to improvements. For example, this morning, I took my herbs at 8:30 am and was fine until a short walk around 11:45am when the tingling returned. So I took some more herbs and about now the tingling has gone right down even though I have just done another short walk to test the improvement. (Walking tends to produce tingling in my left leg).

3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
- gibbledygook
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Gingko biloba, an inhibitor of VEGF
I have been adjusting the doses of salvia to a much lower 3.6g a day as the higher doses were actually counter-productive and I now am experimenting with a much lower maintenance dose. Part of my research on salvia led me to gingko biloba which has similar vasodilatory roles but is also a strong inhibitor of VEGF which causes vascular permeability which is a major problem in MS. I have just been doing a test of the efficacity of the gingko which I call the 5 minute walk tingle test. This morning some four hours after my initial dose of 1.2g salvia and 1.2g gingko I walked for about 5 minutes down the road. On getting to a seat I got a big tingling sensation in the left leg which is something I have often experienced. So I took another 1.2g of the salvia and another 1.2g of the gingko with some curcumin and scutellaria. About 40 minutes later and after another 5 minutes the tingling was much more subdued. About 2 hours later I decided to do this with ginkgo alone. So I took another 1.2g of gingko, waited an hour, walked for 5 minutes and then sat down to check the tingles - this time hardly a tingle at all!!!! I think gingko is probably better at inhibiting VEGF and may therefore be far more useful than the salvia. 

3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,