my_dream_treatment_for_ms

Question:

In article <GBvs9p….@world.std.com>, eh…@world.std.com (ed hill) writes: >i consider stopping MS progression as a solved problem.

Solve mine!” Kathi

Response:

Jeannette Wilson <MsWil…@NOMORESPAM.oz.net> writes:

jeanette what am i?  your new hobby… i was i thought obviously speaking tongue in cheek >And, if the nasal nerves have no myelin, then why are they planning to >use nasal stem cells to re-grow myelin in the brain?  I’m confused. >Jeannette

hit medline.  there are a lot of abstracts on that very subject.   in place of myelin olfactory nerves have "ensheathing" cells.  not myelin. they are trying to get then to grow myelin because they act like schwann cells.  this is because stem cells take their cues from the micro environment in which they are placed.  that is their magic and promise. you are not confused.  for some reason you’ve decided that you want me to seem like a fool ok i’m a fool. now do we need to continue arguing over absolutely nothing? i give up.  you win.  it’s over. be well ed — ———————————————————————–   "The whole business of his life was in the plunder of his gaze…"                                                 Daniel Halevy on Degas | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |

Response:

You could try a new paint job, or a new hairdo for it. Carmel Old Uncle Steve wrote: > Shell – > It don’t have to be new……..just different. <g> > Old Uncle Steve > >Guys are never satisfied with old toys, they always want something new. > >New cars, new breasts, new…. ;>)  Shell

– " Don’t wait for a light to appear at the end of the tunnel.   Stride down there and light the bloody thing yourself." web sites at: www.jaragun.com www.geocities.com/peripata

Response:

hello jeannette Jeannette Wilson <MsWil…@NOMORESPAM.oz.net> writes: >ed hill wrote: >> none of the three show what i’d call a consistant enough pattern of MMP >> inhibition to consider using toward that end. >But why is this new fixation on MMPs *the* *answer*?    Several months >back, IGF was *the* *answer*, and before that forskolin was *the* >*answer*, and before that …..  Have you stopped to think of MS >wholistically?  That there are likely to be several pieces of the >answer, working synergystically, to effect a permanent relapse?

almost all attcks on a cell require breaching the cell membrane.  mmp’s are what does that.   dealing with them isn’t a cure.  but it’s likely to stop or greatly slow progression.   it’s not "the" thing. forskolin is a potassium channel blocker that represents an alternative to 4-Ap.  it can help some of us a little, it’s not "the" thing if you read the zip i sent you about 18 months back you’d know that igf only guides the O2-A cell line along a path toward myelin rather than astrocyte generation. not "the" thing nor have i ever claimed otherwise. >> jeannette.  nobody would accept your participation in  a study of >> endocrine mediated immune alterations during pregnancy. >And, tho I’m far closer, endocrinologically speaking, to a pregnant >woman than you are, somehow the treatment you’ve focussed on now will >work for you?  Ed, please.  I’m far closer, blood-chemistry-wise, to a >pregnant woman than you are.

yes, you are closer.  and since i haven’t arrived at exactly what it is i’m going to try other than a sketchy outline.  neither of us can say it will or won’t act as intended. a pregnant woman’s blood levels of progesteron go from roughly 10ng/ml to 160ng/ml during the first two trimesters.  then they fall through the floor. are your blood levels that high?  has it been reliably measured?  at the time they are or were that high can you document a relapse? >> and while i don’t have funding for a formal study.  i do think i should >> base my decisions on the best info i can get. >> jeannette, you’ve never been pregnant.  for some things there are no >> substitutes. >Again, and you have been?  Ed, I really do appreciate your insights, but >I think you’re getting beyond desperate here searching for *the* >*cure*.  Slow down a tad, stop to think how all the hormones mentioned >work together to make things better.

not expecting to find "the" cure. you slow down.  consider it for yourself and come up with something you feel might help.  document your reasoning.  kick it around with others.  maybe try it out. that’s all i’m doing.  am i desperate.  YES!  goddamned right i am. >> it may seem odd.  but it’s the truth.  and you might find that if >> forskolin doesn’t help your nerve conduction when you snort it then >> aminopyridine doesn’t help you when taken orally.  that’s what we found >> when there were several of us trying it out. >Never tried 4-AP.  Somehow, the idea of snorting birdpoison didn’t sem >especially wise to me.

gotta do what you feel is right for yourself. >> and it just doesn’t have remotly the same neurological effect taken orally >> as nasely.  what we think doesn’t change that. >And a double-blind, placebo-controlled study has been done on this?  Or >could it be the placebo effect we’re seeing here?  Especially with MS, >it’s so hard to know what works and what doesn’t, without the proper >studies.  My estriol treatment *is* currently being studied in >California, that was one of the reasons why my neuro went along with me >on getting it.

yes.  trials have been done on the olfactory nerves as a means of bypassing the BBB enroute to the CNS.  the cites are in the file i sent you. >> that snorted drug effects are different when going through the gut is >> hardly a mystery. >Yet that same drug, going through the gut, *does* work on the other >symptoms, which seems to prove that it *is* absorbed by the digestive >system.

and is there some reason for this argument jeannette? don’t take it if you don’t want to. >Ed, I think that you’re fighting this far too hard.  You’re grasping at >straws, when there aren’t even coffee-stirrers present.  The stress you >get from beating yourself senseless trying to find *the* *cure* is only >making your disease worse, faster.  You are not an OB/GYN, nor are you >an endocrinologist, and most especially, you are not a pregnant woman >(as you’ve pointed out to me).  Just what makes you think that #this# >new miracle cure is *the* *cure*?  And what makes you think that you >fully grok what happens to a woman when she gets pregnant?  Have you >observed hundreds of women, and tested blood chemistries from before >conception to birth?

i never said that this is a "cure". we all have to meet life in our own way, as you well know. i’d vastly prefer dying in a fight to taking a beating every day for a century.  that’s how i’m wired.  and oddly enough i even win sometimes. this is my way.  i don’t ask or require your approval jeannette.   if you actually have some information please bring it up.  just asking vague questions is fruitless. there are a lot of studies of blood chemistries for pregnant women.  and there are a few studies on the inhibition of MMP activity. i’m exercising my curiosity.  and acting on what i learn. if you are troubled by that why read my posts? fyi; i was taking acyclovir long before there were studies on it in MS.  now it’s very commonly prescribed.  should i have waited for someones approval?  same with 1,25(OH)2D3. you slow down my freind.  i’m in a fight.   should i mock you if i disagree with you? ed — ———————————————————————–   "The whole business of his life was in the plunder of his gaze…"                                                 Daniel Halevy on Degas | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |

Response:

ed hill wrote: > none of the three show what i’d call a consistant enough pattern of MMP > inhibition to consider using toward that end.

But why is this new fixation on MMPs *the* *answer*?    Several months back, IGF was *the* *answer*, and before that forskolin was *the* *answer*, and before that …..  Have you stopped to think of MS wholistically?  That there are likely to be several pieces of the answer, working synergystically, to effect a permanent relapse? > jeannette.  nobody would accept your participation in  a study of > endocrine mediated immune alterations during pregnancy.

And, tho I’m far closer, endocrinologically speaking, to a pregnant woman than you are, somehow the treatment you’ve focussed on now will work for you?  Ed, please.  I’m far closer, blood-chemistry-wise, to a pregnant woman than you are. > and while i don’t have funding for a formal study.  i do think i should > base my decisions on the best info i can get. > jeannette, you’ve never been pregnant.  for some things there are no > substitutes.

Again, and you have been?  Ed, I really do appreciate your insights, but I think you’re getting beyond desperate here searching for *the* *cure*.  Slow down a tad, stop to think how all the hormones mentioned work together to make things better. > it may seem odd.  but it’s the truth.  and you might find that if > forskolin doesn’t help your nerve conduction when you snort it then > aminopyridine doesn’t help you when taken orally.  that’s what we found > when there were several of us trying it out.

Never tried 4-AP.  Somehow, the idea of snorting birdpoison didn’t sem especially wise to me. > and it just doesn’t have remotly the same neurological effect taken orally > as nasely.  what we think doesn’t change that.

And a double-blind, placebo-controlled study has been done on this?  Or could it be the placebo effect we’re seeing here?  Especially with MS, it’s so hard to know what works and what doesn’t, without the proper studies.  My estriol treatment *is* currently being studied in California, that was one of the reasons why my neuro went along with me on getting it. > that snorted drug effects are different when going through the gut is > hardly a mystery.

Yet that same drug, going through the gut, *does* work on the other symptoms, which seems to prove that it *is* absorbed by the digestive system. Ed, I think that you’re fighting this far too hard.  You’re grasping at straws, when there aren’t even coffee-stirrers present.  The stress you get from beating yourself senseless trying to find *the* *cure* is only making your disease worse, faster.  You are not an OB/GYN, nor are you an endocrinologist, and most especially, you are not a pregnant woman (as you’ve pointed out to me).  Just what makes you think that #this# new miracle cure is *the* *cure*?  And what makes you think that you fully grok what happens to a woman when she gets pregnant?  Have you observed hundreds of women, and tested blood chemistries from before conception to birth?

Response:

Guys are never satisfied with old toys, they always want something new. New cars, new breasts, new…. ;>)  Shell – Hide quoted text — Show quoted text -carmel wrote: > I thought you already had a perfectly satisfactory toy, Steve. > Carmel > Old Uncle Steve wrote: > > ed – > > This sounds plausable to me, but…… I bought two Chevy Vegas. > > If you start to grow breasts, I want to get on the same treatment.  It would be > > nice to have something to play with here in my lonelyness. > > Old Uncle Steve > — > " Don’t wait for a light to appear at the end of the tunnel. >   Stride down there and light the bloody thing yourself." > web sites at: > www.jaragun.com > www.geocities.com/peripata

Response:

LOL, You sound like my husband, he says if he were a woman he’d be a lesbian. I’m not quite sure what he’s talking about….but I’m sure you know Old Uncle Steve. (smile) Shell – Hide quoted text — Show quoted text -Old Uncle Steve wrote: > ed – > This sounds plausable to me, but…… I bought two Chevy Vegas. > If you start to grow breasts, I want to get on the same treatment.  It would be > nice to have something to play with here in my lonelyness. > Old Uncle Steve

Response:

Shell – It don’t have to be new……..just different. <g> Old Uncle Steve – Hide quoted text — Show quoted text ->Guys are never satisfied with old toys, they always want something new. >New cars, new breasts, new…. ;>)  Shell

Response:

hello jeannette aaarrrggghhh Jeannette Wilson <MsWil…@NOMORESPAM.oz.net> writes: >ed hill wrote: >> hi jeanette >Hi Ed, glad to "hear" from you again >> but estrogen isn’t shown to have a consistent effect on mmp’s. >> estroGEN lowers on mmp at low seru, levels and raises it at high levels. >> it’s too inconsistent to consider.

trust me on this please…. i’m well aware of the differences none of the three show what i’d call a consistant enough pattern of MMP inhibition to consider using toward that end. >Which form of estrogen?  There are three of which I’m aware.  E-1, >estradiol, is what causes fat redistribution, preventing osteoporosis,

(snip good inf) >> what you consider large doses may not actually be high in the cns relative >> to what a woman experiences early in a pregnancy jeanette.  you must admit >> that your particular endocrine makeup isn’t quite the same as that of a >> woman whose pregnant. >Um, what the CCNS contains, it got from the blood stream, and my "high >doses" are also measured there, the same as any woman’s would be. >> again.  from the get go jeanette.  you aren’t exactly a pregnant woman. >Not physically, no, but as far as goes the levels of hormones in the >blood stream, yes I am.

jeannette.  nobody would accept your participation in  a study of endocrine mediated immune alterations during pregnancy.   and while i don’t have funding for a formal study.  i do think i should base my decisions on the best info i can get. jeannette, you’ve never been pregnant.  for some things there are no substitutes.   >> if you were swallowing it the results would be completely different.  no >> similarity at all.  the part involved simply doesn’t get through the gut. >Funny, then, that ingesting it still gives all the other effects >forskolin is known for – bronch-dialation, vaso-dialation, lowering of >blood pressure, relief of glaucoma and so on.  It seems odd to me that >the same chemical that causes these effects can’t be absorbed in the guy >when it’s a different effect, caused by the same chemical, in this case.

it may seem odd.  but it’s the truth.  and you might find that if forskolin doesn’t help your nerve conduction when you snort it then aminopyridine doesn’t help you when taken orally.  that’s what we found when there were several of us trying it out. and it just doesn’t have remotly the same neurological effect taken orally as nasely.  what we think doesn’t change that. >I tried snorting the stuff – burned the pee out of my nose, made it drip >like an old faucet for hours, and still did nothing measurable for me >…  except making my wallet thinner.

didn’t do anything for kip either.  he’s uneffected by aminopyridine as well and that pattern carried for a few others. that snorted drug effects are different when going through the gut is hardly a mystery. >> whhhew, gladyou mentionaed that jeanette.  like i said but didn’t wan t to >> go into because of your privacy.  you aren’t quite the same hormonaly >> as a woman in her first two trimesters of pregnancy. >I am, or can be (I’m currently off the progesterone, and on a low >maintenance level of estrad >that you’d have to do other tests to determine my chromosonal sex.

glad you’ve been able to acheive that level of success.   doesn’t change my mind though.  i am after all a dictator of my own cognitive fifedom.  however small and barren a land it may be. best regards ed >Just for what it’s worth, in case any of y’all may have seen stuff about >how "andropause" may tgger the onset of MS in men, well, call it >"andropause" that triggered mine.  Two months after I started taking >estradiol, as my testes were shutting *waaaaay* down, I got my initial >attack – my balance went, totally, and I spent the next month flat on my >back, in a tiny nest on the bedroom floor, only leaving it to crawl to >the bathroom to defecate or vomit.  A bit over a year later, I was >surgically castrated (meaning no more testes at all, buhbye), and my >serum testosterone level plummeted even more, bringing on a renewed >attack that lasted for years. >It wasn’t until I left Chicago that I found a few doctors willing to >look past their bigotry and fear of AIDS and properly diagnose me with >MS. >Whee, what fun.  Ha.  Ha.  Ha. >Jeannette

– ———————————————————————–   "The whole business of his life was in the plunder of his gaze…"                                                 Daniel Halevy on Degas | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |

Response:

hi alden alden8…@aol.com4getit (Old Uncle Steve) writes: >ed – >No offense intended.  Just my poor attempt at humor in a subject I know >absolutely nothing about.  Please forgive.

what’s the line?  "none taken" >I am constantly amazed (and a little frightened) of people willing to honestly >subject themselves to untested and unscientific treatments.  Weren’t you the >one telling everyone to snort some home-made powder just a few months ago? >Old Uncle Steve

alden, if you read what i wrote back then and came away thinking that.  there’s nothing i can say or do that’ll ever make any sense to you. would you consider honoring me with you bozo filter?  please? how do you define "scientific" alden? does science require a government or academic seal of approval?  a corporate sign off? colius forskolii has been used for a coupla thousand years in india.  it’s still used there and now here.  it’s used to stimulate cAMP and as a mitogen in biolabs. it’s a pretty well a known quantity. and it’s not "home made" i was using it for the same reasons when i stumbled into it’s ability to do exactly what aminopyridine does.  at least for me. so i used it at different doses for a coupla months with good results and no detectable problems.  then i contacted a couple of people from the group who tried it as well for another month or so. still no problems and it was helping them. then i mentioned it and what it was doing on the group with abundant cautions and clear descriptions of what and why and that this was untried and it was a risk.  i said clearly that you could get hurt trying this. (if anyones curious just e me) so a few more tried it and we found that those helped by aminopyridine were also helped by snorting forskolin. and because one hearty, reckless (i won’t mention kip soul tried a dose five or ten times what i strongly and repeatedly suggested was a maximum reasonable dose we also found it a lot less likely to cause seizures. and instead of blocking myelin generation like 4-Ap it actually stimulates it via increased cAMP. so it costs about a tenth as much, does as good a job has benefits where aminopyridine has problems and on top of that it doesn’t seem to give anyone seizures. unscientific? silly me, i should have kept it quiet and just told a few freinds. alden, i would not suggest that ANYONE EVER snort a homemade powder. i told folks about this because i’d have been an asshole not to.  and i never suggested that anyone use it.  i just told folks what it was doing for me and why.  as well as outlining the potential dangers. alden, i consider my MS involvment a fight. plain and simple.  some folks beg others to fight for them, some just roll over and there are some fools who turn around and start chuckin’ the furniture.   we all have to face things in our own ways. anyways, i’ll ask again. are there any women out there who’ve a dx of MS that’ve had normal pregnancys who experienced exacerbations during the first two trimesters? also has anyone experiencing attacks post partum? if you want to e me i’ll be glad to hear from you either way.  your privacy will be protected. regards and much sincere thanks to those who’ve answered so far. ed — ———————————————————————–   "The whole business of his life was in the plunder of his gaze…"                                                 Daniel Halevy on Degas | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |

Response:

ed – This sounds plausable to me, but…… I bought two Chevy Vegas. If you start to grow breasts, I want to get on the same treatment.  It would be nice to have something to play with here in my lonelyness. Old Uncle Steve

Response:

resd a bit more carefully my freind. On 16 Apr 2001, Old Uncle Steve wrote: > ed – > This sounds plausable to me, but…… I bought two Chevy Vegas. > If you start to grow breasts, I want to get on the same treatment.  It would be > nice to have something to play with here in my lonelyness. > Old Uncle Steve

the attack we sustain is driven by mmp activity INSIDE of the BBB.  now that is a one way street. an intrathecal drug delivery means that the total amount of drug delivered only needs to perfuse the pint or two of cerebral spinal fluid.  once that drug is released into the body it’s diluted by the far greater volume of fluid in the bloodstream. that means you can do a very high dose in the CNS and never reach an effective level in your bloodstream. this USES the formidable barrier the BBB presents rather than fighting it. the turnover of csf is about 6 hours.   i did a protocol involving 5 times the hormone dose used by preop transexuals trying to femenize their bodies.  i used a syringe without a needle on it to deposit the solutions directly onto the olfactry nerves which because they have no myelin and run directly into the brain compartment present a great way to bypass the BBB.  not as effective as an intrathecal pump though. if that strategy wasn’t effective in protecting me from the obvious problems of feminisation i’d have d cups.  and no whiskers. not the case.  no changes to my body at all. but i did get considerable hippocampal improvement, mood stability and according to my PT objectively measurable physical improvement. so you go ahead and be "clever". me?  i’m stoppin’ this little ride right here. regards ed

Response:

ed hill wrote: > in the dozens of studies on mmp inhibition progesterone comes up > consistantly as a broad spectrum inhibitor of mmp activity. > women get a breakwhile pregnant.  guess what.  their progesterone levels > go therough the roof into the third trimester and then drop through the > floor. > can anyone say post partum attack?  pretty common, and "little > understood". > (little understood my ass)

Um, they also get estriol, produced by the placenta, and after birth, the estriol goes away. Ed, for about a year, I got large amounts of "natural" progesterone, in pill form from my pharmacist (natural means it’s chemically and structurally the same as is made by the body, as opposed to medroxyprogesterone acetate, which is different enough to have been patentable and thus protected and a source of good money for pharmaceutical companies).  I was taking 100mg / day of progesterone. Guess what?  No difference at all. During this time, I was also on 15mg / day estriol…  Since the progesterone has run out, I stopped getting it, and have been on just estriol now for about a year.  Still no change.  I still get attacks whenever I’m stressed out, and IV methyl-pred stops them and restores most of what I lost to the attack. > in the case of those who potassium channel blockers help we could also add > forskolin to the mix.  actually all of us would benefit.  in stimulating > cAMP between that and the progesterone we might get some regeneration.

I’ve also tried coleus forskohlii for a while, and been off it for a while, too.  No difference either way.  Mind you, I was swallowing a capsule of known potency sever into my nose, so my results may be different than yours. > i firmly believe this would not only stop or greatly slow progression, it > might actually give back ground.  and without screwing up our lives with > daily shots and piles of pills.

I dunno, Ed.  My life only gets screwed up these days when I let the world get to me.  Long as I stay centered and grounded, things get no worse, and even improve a wee bit if I’m getting PT.  Colds can bring on attacks, so I avoid colds by the field expedient approach – I’m essentially a hermit, and leave my apartment very rarely – little chance to run into sick people then This whole approach has other benefits, too.  Not only do I avoid the daily (or every other day, or weekly) shots, with the pain and nuisance thereof, I also have more spendable ca$h, because I’m not trying to line the pockets of the CRAB-makers. For the record, and those of you in the group who may need a refresh, I’m a 41 yr old male-to-female transsexual (guys – I’m decidedly NOT interested.  I’m celibate and purely lesbian, have been for years now, and plan to stay that way.) with secondary progressive MS.  I had my first full-blown attack in late December, 1994, and was *finally* DX’ in late 1997.  I can still, sort of, walk, for a block or two total daily.  My balance is purely visual now, my whole right side is, at best, marginally useful (about as useful as a wooden leg and Captain Hook’s hand), and with the last attack (brought on by stress, from IRC, which program has since been wiped from my life), my left eye’s sight went totally away (as in I couldn’t even tell light from dark for a day or two), but it came back after steroids. Jeannette

Response:

ed – No offense intended.  Just my poor attempt at humor in a subject I know absolutely nothing about.  Please forgive. I am constantly amazed (and a little frightened) of people willing to honestly subject themselves to untested and unscientific treatments.  Weren’t you the one telling everyone to snort some home-made powder just a few months ago? Old Uncle Steve

Response:

- Hide quoted text — Show quoted text -ed hill wrote: > i did a protocol involving 5 times the hormone dose used by preop > transexuals trying to femenize their bodies.  i used a syringe without a > needle on it to deposit the solutions directly onto the olfactry nerves > which because they have no myelin and run directly into the brain > compartment present a great way to bypass the BBB.  not as effective as an > intrathecal pump though. > if that strategy wasn’t effective in protecting me from the obvious > problems of feminisation i’d have d cups.  and no whiskers. > not the case.  no changes to my body at all. > but i did get considerable hippocampal improvement, mood stability and > according to my PT objectively measurable physical improvement.

Um, Ed?  The progesterone only causes some glandular growth in the breasts, nothing else.  To cause the body to become more feminine takes estrogen – more specifically, estradiol, or E-1 estrogen.  This is what will cause breast growth.  It will also lead to far less body hair, tho it seems to have little effect on facial hair (would that it did. Electrolysis is both painful and expen$ive), as well as stopping male patter baldness dead in its tracks, far better than Rogaine but at the cost of your libido and fertility. And, if the nasal nerves have no myelin, then why are they planning to use nasal stem cells to re-grow myelin in the brain?  I’m confused. Jeannette

Response:

hi jeanette Jeannette Wilson <MsWil…@NOMORESPAM.oz.net> writes: >ed hill wrote: >> in the dozens of studies on mmp inhibition progesterone comes up >> consistantly as a broad spectrum inhibitor of mmp activity. >> women get a breakwhile pregnant.  guess what.  their progesterone levels >> go therough the roof into the third trimester and then drop through the >> floor. >> can anyone say post partum attack?  pretty common, and "little >> understood". >> (little understood my ass) >Um, they also get estriol, produced by the placenta, and after birth, >the estriol goes away.

but estrogen isn’t shown to have a consistent effect on mmp’s. estroGEN lowers on mmp at low seru, levels and raises it at high levels. it’s too inconsistent to consider. >Ed, for about a year, I got large amounts of "natural" progesterone, in >pill form from my pharmacist (natural means it’s chemically and >structurally the same as is made by the body, as opposed to >medroxyprogesterone acetate, which is different enough to have been >patentable and thus protected and a source of good money for >pharmaceutical companies).  I was taking 100mg / day of progesterone. >Guess what?  No difference at all.

what you consider large doses may not actually be high in the cns relative to what a woman experiences early in a pregnancy jeanette.  you must admit that your particular endocrine makeup isn’t quite the same as that of a woman whose pregnant. >During this time, I was also on 15mg / day estriol…  Since the >progesterone has run out, I stopped getting it, and have been on just >estriol now for about a year.  Still no change.  I still get attacks >whenever I’m stressed out, and IV methyl-pred stops them and restores >most of what I lost to the attack.

again.  from the get go jeanette.  you aren’t exactly a pregnant woman. >> in the case of those who potassium channel blockers help we could also add >> forskolin to the mix.  actually all of us would benefit.  in stimulating >> cAMP between that and the progesterone we might get some regeneration. >I’ve also tried coleus forskohlii for a while, and been off it for a >while, too.  No difference either way.  Mind you, I was swallowing a >capsule of known potency sever >into my nose, so my results may be different than yours.

if you were swallowing it the results would be completely different.  no similarity at all.  the part involved simply doesn’t get through the gut. >> i firmly believe this would not only stop or greatly slow progression, it >> might actually give back ground.  and without screwing up our lives with >> daily shots and piles of pills. >I dunno, Ed.  My life only gets screwed up these days when I let the >world get to me.  Long as I stay centered and grounded, things get no >worse, and even improve a wee bit if I’m getting PT.  Colds can bring on >attacks, so I avoid colds by the field expedient approach – I’m >essentially a hermit, and leave my apartment very rarely – little chance >to run into sick people then

ya.  colds get most of us as far as i know.  glad to hear you’re doing well otherwise though. – Hide quoted text — Show quoted text ->This whole approach has other benefits, too.  Not only do I avoid the >daily (or every other day, or weekly) shots, with the pain and nuisance >thereof, I also have more spendable ca$h, because I’m not trying to line >the pockets of the CRAB-makers. >For the record, and those of you in the group who may need a refresh, >I’m a 41 yr old male-to-female transsexual (guys – I’m decidedly NOT >interested.  I’m celibate and purely lesbian, have been for years now, >and plan to stay that way.) with secondary progressive MS.  I had my >first full-blown attack in late December, 1994, and was *finally* DX’ >in late 1997.  I can still, sort of, walk, for a block or two total >daily.  My balance is purely visual now, my whole right side is, at >best, marginally useful (about as useful as a wooden leg and Captain >Hook’s hand), and with the last attack (brought on by stress, from IRC, >which program has since been wiped from my life), my left eye’s sight >went totally away (as in I couldn’t even tell light from dark for a day >or two), but it came back after steroids.

whhhew, gladyou mentionaed that jeanette.  like i said but didn’t wan t to go into because of your privacy.  you aren’t quite the same hormonaly as a woman in her first two trimesters of pregnancy. >Jeannette

good to hear from you.though. regards ed — ———————————————————————–   "The whole business of his life was in the plunder of his gaze…"                                                 Daniel Halevy on Degas | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |

Response:

Michael wrote: > Ahhh… thanks for that.   I’d think (in my relative ignorance) that your hormonal > situation’s simpler than a pregnant woman’s in some respects and much more > complicated in others.   Certainly it’s not likely to be directly comparable in > many ways.

Actually, my hormonal situation nowadays is totally controllable by changing what pills I take.  I can make my body "think" it’s pregnant, "think" that it just got over pregnancy and should start lactating (this takes time, tho, as I’d have to run my estradiol and progesterone levels WAAY up first, then cut all the estrogn off flat), or even, if I were really twisted, "think" it was a male again, and start regrowing body and facial hair. > Hmmmm… talk about an orphan minority though!  If hormones really do have a lot > to do with the behaviour/prognosis of MS, you and any others like you aren’t > likely soon to have any researched data  on which to base some of your lives’ big > decisions, are you?   Kinda sucks, if you ask me.   (As if MS didn’t already.) >

Yup, exactly true.  My neuro told me about one other MtoF TS patient he has, and I’ve heard anecdotal evidence of others across the country, but we’re so few, and so hard to characterise, that I don’t expect we’ll ever have doctors who can treat us adequately.  I stumbled upon the estriol treatment myself, and with some advice from Ed, I hit my neuro with the plan.  He agreed to let me try it, at least. However, he’s booked many months in advance.  His colleague is far less supportive, and not only won’t discuss adding estradiol to what I take (I’m taking some anyways, to prevent heart attacks and osteoporosis), but he gave me only three months prescription on the estriol, too.  He feels that, if he didn’t suggest it, I shouldn’t be taking it  My GP, through whom I could get estradiol, also doesn’t want to mess with me, because of the estradiol – something he’s never heard of before.  :( I’m kind of stuck here, watching my supply of grey-market pills running low and wondering why I can’t just get them all for myself, if I have to do all the research myself too. > This part’s personal, and meaningless for the present discussion.   Probably means > a lot if you hang out in straight bars, however…  <G>

That part was put in to forestall the crowd of "I’m really not gay, oh no, not me, never ever, but geeze, I just wanna ***** some chick with a d***, so here’s my picture, aren’t I just a hunk?  I’ll be in Seattle next month, where can I meet you?" email that seems to come whenever men hear about me.  Guys, I’m flattered, sort of, but no.  I’m kind of cute, tho getting beyond "chubby" and heading into just plain fat  ’S what comes when one doesn’t exercise, because the MS keeps half the body from being able to move.  As for hanging out in bars …  not even lezzie bars, these days.  They are WAY too far from the bus stop for me to walk there Jeannette

Response:

ed hill wrote: > hi jeanette

Hi Ed, glad to "hear" from you again > but estrogen isn’t shown to have a consistent effect on mmp’s. > estroGEN lowers on mmp at low seru, levels and raises it at high levels. > it’s too inconsistent to consider.

Which form of estrogen?  There are three of which I’m aware.  E-1, estradiol, is what causes fat redistribution, preventing osteoporosis, preventing heart attacks and, to some large extent, causing breast cancer.  E-2, estrone, is what estradiol turns into when it hits the kidneys and is soon thereafter removed from the system.  E-3, estradiol, is what forms in the placenta, and appears to play an as-yet-undetermined role in moderating the immune system, to prevent the body from "seeing" the developing fetus as a hostile growth. Yes, they are all forms of "estrogen", but each is different, and each plays a different role.  To lump them all together would be akin to thinking that, since high-octane av gas, kerosene and gear grease are all "petrolium distillates", they could be used interchangeably in a vehicle. > what you consider large doses may not actually be high in the cns relative > to what a woman experiences early in a pregnancy jeanette.  you must admit > that your particular endocrine makeup isn’t quite the same as that of a > woman whose pregnant.

Um, what the CCNS contains, it got from the blood stream, and my "high doses" are also measured there, the same as any woman’s would be. > again.  from the get go jeanette.  you aren’t exactly a pregnant woman.

Not physically, no, but as far as goes the levels of hormones in the blood stream, yes I am. > if you were swallowing it the results would be completely different.  no > similarity at all.  the part involved simply doesn’t get through the gut.

Funny, then, that ingesting it still gives all the other effects forskolin is known for – bronch-dialation, vaso-dialation, lowering of blood pressure, relief of glaucoma and so on.  It seems odd to me that the same chemical that causes these effects can’t be absorbed in the guy when it’s a different effect, caused by the same chemical, in this case. I tried snorting the stuff – burned the pee out of my nose, made it drip like an old faucet for hours, and still did nothing measurable for me …  except making my wallet thinner. > whhhew, gladyou mentionaed that jeanette.  like i said but didn’t wan t to > go into because of your privacy.  you aren’t quite the same hormonaly > as a woman in her first two trimesters of pregnancy.

I am, or can be (I’m currently off the progesterone, and on a low maintenance level of estrad that you’d have to do other tests to determine my chromosonal sex. Just for what it’s worth, in case any of y’all may have seen stuff about how "andropause" may tgger the onset of MS in men, well, call it "andropause" that triggered mine.  Two months after I started taking estradiol, as my testes were shutting *waaaaay* down, I got my initial attack – my balance went, totally, and I spent the next month flat on my back, in a tiny nest on the bedroom floor, only leaving it to crawl to the bathroom to defecate or vomit.  A bit over a year later, I was surgically castrated (meaning no more testes at all, buhbye), and my serum testosterone level plummeted even more, bringing on a renewed attack that lasted for years. It wasn’t until I left Chicago that I found a few doctors willing to look past their bigotry and fear of AIDS and properly diagnose me with MS. Whee, what fun.  Ha.  Ha.  Ha. Jeannette

Response:

Carmel – Others obviously do not think so.  I try to bring sunshine and smiles but some just can not be cheered up.  Their loss.  I am so damn cute. Old Uncle Steve – Hide quoted text — Show quoted text ->I thought you already had a perfectly satisfactory toy, Steve.   >Carmel

Response:

And modest. Carmel Old Uncle Steve wrote: > Carmel – > Others obviously do not think so.  I try to bring sunshine and smiles but some > just can not be cheered up.  Their loss.  I am so damn cute. > Old Uncle Steve > >I thought you already had a perfectly satisfactory toy, Steve. > >Carmel

– " Don’t wait for a light to appear at the end of the tunnel.   Stride down there and light the bloody thing yourself." web sites at: www.jaragun.com www.geocities.com/peripata

Response:

I thought you already had a perfectly satisfactory toy, Steve.   Carmel Old Uncle Steve wrote: > ed – > This sounds plausable to me, but…… I bought two Chevy Vegas. > If you start to grow breasts, I want to get on the same treatment.  It would be > nice to have something to play with here in my lonelyness. > Old Uncle Steve

– " Don’t wait for a light to appear at the end of the tunnel.   Stride down there and light the bloody thing yourself." web sites at: www.jaragun.com www.geocities.com/peripata

Response:

"Jeannette Wilson" <MsWil…@NOMORESPAM.oz.net> wrote in message

news:9bf93d$15s$0@216.39.144.179… > For the record, and those of you in the group who may need a refresh, > I’m a 41 yr old male-to-female transsexual

Ahhh… thanks for that.   I’d think (in my relative ignorance) that your hormonal situation’s simpler than a pregnant woman’s in some respects and much more complicated in others.   Certainly it’s not likely to be directly comparable in many ways. Hmmmm… talk about an orphan minority though!  If hormones really do have a lot to do with the behaviour/prognosis of MS, you and any others like you aren’t likely soon to have any researched data  on which to base some of your lives’ big decisions, are you?   Kinda sucks, if you ask me.   (As if MS didn’t already.) > (guys – I’m decidedly NOT > interested.  I’m celibate and purely lesbian, have been for years now, > and plan to stay that way.)

This part’s personal, and meaningless for the present discussion.   Probably means a lot if you hang out in straight bars, however…  <G> —           ((((((((((U)))))))))) Michael <muirh…@island.net>    -=| Livin’ on Island Time |=-

Response:

hi folks i’ve been ranting a bit about matrix metalloproteinase here and i appreciate your patience. nobody’s flamed me. nobody’s laughed at this. ok…is anybody listening here? anyways.  my personal wish i want an intrathecal pump set to inject very low dose progesterone directly into my spinal fluid. in the dozens of studies on mmp inhibition progesterone comes up consistantly as a broad spectrum inhibitor of mmp activity. women get a breakwhile pregnant.  guess what.  their progesterone levels go therough the roof into the third trimester and then drop through the floor. can anyone say post partum attack?  pretty common, and "little understood". (little understood my ass) you ladies also feel like hell during mensus and after menopause… guess what?  also times when your progesterone hits the celler. intrathecal dosing of progesterone can let men take the hormone in quantities that will have little or no effect on the rest of our bodies.   and for both men and women exogenous progesterone is cleared from the bloodstream very quickly.  an intrathecal pump would allow a steady csf level without high serum levels and their problems. in the case of those who potassium channel blockers help we could also add forskolin to the mix.  actually all of us would benefit.  in stimulating cAMP between that and the progesterone we might get some regeneration.   i firmly believe this would not only stop or greatly slow progression, it might actually give back ground.  and without screwing up our lives with daily shots and piles of pills. please think about this folks.  it’s a real ANSWER! of course the drug industry would miss us. in my case WILL miss me.  i’m getting this if i have to hold the neuro’s family hostage at a chucky cheese. feel free to ignore this.  i’ll just play over here.  it’s ok, you don’t really need answers.  the questions are so much fun regards ed — ———————————————————————–   "The whole business of his life was in the plunder of his gaze…"                                                 Daniel Halevy on Degas | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |

Response:

Are you serious ed?  You’re really going to try to do this?  Wow!  It’s interesting, and there might be a lot in it, but that sounds risky.  Let us know what happens OK? carmel – Hide quoted text — Show quoted text -ed hill wrote: > hi folks > i’ve been ranting a bit about matrix metalloproteinase here and i > appreciate your patience. > nobody’s flamed me. > nobody’s laughed at this. > ok…is anybody listening here? > anyways.  my personal wish > i want an intrathecal pump set to inject very low dose progesterone > directly into my spinal fluid. > in the dozens of studies on mmp inhibition progesterone comes up > consistantly as a broad spectrum inhibitor of mmp activity. > women get a breakwhile pregnant.  guess what.  their progesterone levels > go therough the roof into the third trimester and then drop through the > floor. > can anyone say post partum attack?  pretty common, and "little > understood". > (little understood my ass) > you ladies also feel like hell during mensus and after menopause… > guess what?  also times when your progesterone hits the celler. > intrathecal dosing of progesterone can let men take the hormone in > quantities that will have little or no effect on the rest of our bodies. > and for both men and women exogenous progesterone is cleared from the > bloodstream very quickly.  an intrathecal pump would allow a steady csf > level without high serum levels and their problems. > in the case of those who potassium channel blockers help we could also add > forskolin to the mix.  actually all of us would benefit.  in stimulating > cAMP between that and the progesterone we might get some regeneration. > i firmly believe this would not only stop or greatly slow progression, it > might actually give back ground.  and without screwing up our lives with > daily shots and piles of pills. > please think about this folks.  it’s a real ANSWER! > of course the drug industry would miss us. > in my case WILL miss me.  i’m getting this if i have to hold the neuro’s > family hostage at a chucky cheese. > feel free to ignore this.  i’ll just play over here.  it’s ok, you don’t > really need answers.  the questions are so much fun > regards > ed > — > ———————————————————————– >   "The whole business of his life was in the plunder of his gaze…" >                                                 Daniel Halevy on Degas > | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |

– " Don’t wait for a light to appear at the end of the tunnel.   Stride down there and light the bloody thing yourself." web sites at: www.jaragun.com www.geocities.com/peripata

Response:

hi carmel carmel <car…@cyberwizards.com.au> writes: >Are you serious ed?  You’re really going to try to do this?  Wow!  It’s >interesting, and there might be a lot in it, but that sounds risky.  Let >us know what happens OK? >carmel

if there is any way to get this done,i’ll do it. as i see it, i have NOTHING to lose and everything to gain. i told my gp when we met that i have no interest in a war of attrition. and i have been studying the endocrinology of nerve growth for years. don’t know why i didn’t see this before. considering the mmp element shifted my perspective a bit.  having gone though a good deal of the literature i have no doubts. (which is a bit of a caution in itself)  it’s a matter of determining doseage and that’s doable.  human responses to blood levels of progesterone are well known territory. i consider stopping MS progression as a solved problem.  the science has been there for a few years.  we just weren’t viewing it from the right angle.  now it’s a matter of actually getting it done. unfortunately that may be a great deal harder than the problem of the disease itself. best regards ed – Hide quoted text — Show quoted text ->ed hill wrote: >> hi folks >> i’ve been ranting a bit about matrix metalloproteinase here and i >> appreciate your patience. >> nobody’s flamed me. >> nobody’s laughed at this. >> ok…is anybody listening here? >> anyways.  my personal wish >> i want an intrathecal pump set to inject very low dose progesterone >> directly into my spinal fluid. >> in the dozens of studies on mmp inhibition progesterone comes up >> consistantly as a broad spectrum inhibitor of mmp activity. >> women get a breakwhile pregnant.  guess what.  their progesterone levels >> go therough the roof into the third trimester and then drop through the >> floor. >> can anyone say post partum attack?  pretty common, and "little >> understood". >> (little understood my ass) >> you ladies also feel like hell during mensus and after menopause… >> guess what?  also times when your progesterone hits the celler. >> intrathecal dosing of progesterone can let men take the hormone in >> quantities that will have little or no effect on the rest of our bodies. >> and for both men and women exogenous progesterone is cleared from the >> bloodstream very quickly.  an intrathecal pump would allow a steady csf >> level without high serum levels and their problems. >> in the case of those who potassium channel blockers help we could also add >> forskolin to the mix.  actually all of us would benefit.  in stimulating >> cAMP between that and the progesterone we might get some regeneration. >> i firmly believe this would not only stop or greatly slow progression, it >> might actually give back ground.  and without screwing up our lives with >> daily shots and piles of pills. >> please think about this folks.  it’s a real ANSWER! >> of course the drug industry would miss us. >> in my case WILL miss me.  i’m getting this if i have to hold the neuro’s >> family hostage at a chucky cheese. >> feel free to ignore this.  i’ll just play over here.  it’s ok, you don’t >> really need answers.  the questions are so much fun >> regards >> ed >> — >> ———————————————————————– >>   "The whole business of his life was in the plunder of his gaze…" >>                                                 Daniel Halevy on Degas >> | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 | >– >" Don’t wait for a light to appear at the end of the tunnel. >  Stride down there and light the bloody thing yourself." >web sites at: >www.jaragun.com >www.geocities.com/peripata

– ———————————————————————–   "The whole business of his life was in the plunder of his gaze…"                                                 Daniel Halevy on Degas | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |

Response:

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