gummy worms across the pond.....

[Herodotus]

ha ha, this is a funny thread, with valid points made by all. i'm not "scientifically articulate", but i think one of the reasons, it's thought, this works is that it damps down the immune system (or they, the worms' presence), to assure the parasites' survival. kind of like when the immune system is down-regulated in pregnancy. that makes sense if it's immune driven. but then there's CCSVI and the veins theory. and it surfaced long before the immune theory. charcot ,french neurologist, died 1893 ! He named and was the first to describe multiple sclerosis. he was the 1st to note that the plaques he observed in MS upon microscopic examination were venous centric. so that ties in with CCSVI. i'm beginning to think i'd rather try worms than tysabri. but it's easier to be prescribed tysabri than worms! waiting for my jc antibody test. meantime, here's a link from ashton embry re tysabri:

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there were some shenannigans with the co. directors & stock sales right before the PML issue surfaced. so shocking! (not)

we'd best get our worms soon - it's spring, & they will all be used for bait.

yummy gummy worms,

H.

[Frog42]

These are what I think of when I see the thread title.

[Lyon]

Big ol' can of worms..

Lyon, no need to apologize.

You do seem to have opened up a whole new can of worms here.

oooooooooohhhhhhhh, that's a groaner! LOL!

Sorry about the slow response time, it might be the norm for me. I signed up here long ago and then kind of got addicted to thisisms in the meantime and forgot all the other sites I'd signed up for and now I'm having a hard time remembering to come back and remembering my login and password

[agate]

Lyon, you seem to be new here--

Getting smileys to go where you want them is a problem I've been having too. If you find a smiley in the wrong spot in your post, you can usually cut and paste it into the place where you want it to go.

[Lyon]

Getting smileys to go where you want them is a problem I've been having too. If you find a smiley in the wrong spot in your post, you can usually cut and paste it into the place where you want it to go.

Good point, I didn't even try that. Thanks for the help!

[Gabriella7]

I grew up without a flush toilet altho we did have access to water in our kitchen but not a bathroom for several years only an outhouse. We were out in a rural area and the scientific community believes one contracts MS during the first 15 years of where one lives. I was out in the sun all day long except during school time so the connection to a lack of vitamin D does not apply to me either.

We probably had worms too! If they are speaking of pinworms a lot of people in the south have those when they are children. I wouldn't want to participate in this study however.

Gabriella

[Herodotus]

A parasite walks into a bar. The bartender says “we don’t serve your kind in here.” The parasite says “well you’re not a very good host.”

ha ha, can't take credit, this is from this is ms. there seems to be a trial on @ UW of madison.

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if link doesn't connect, the thread is "parasite eggs swallowed today".

as originator of [I]this[I] thread, i command that in future, our fine helminth friends be referred to only as gummy worms, and [I]never[I] the vomitous term parasite. anything with the capacity to ameliorate my MS is always welcome in my book. (and bod)

oh, and i just tested positive for the jc virus antibodies, so it's doubtful i'll start tysabri. get busy gummies, and give us some relief!

as ever,

H.

[SalpalSally]

Hey if it doesn't work, we could alway try leeches again.

[agate]

Hey if it doesn't work, we could alway try leeches again.

"Again"? I haven't had my first helping of leeches yet.

Or we could try the bees. Whatever it is, we should make sure it's painful or at least highly unpleasant. Otherwise we won't feel as if we're really doing anything.

[Frog42]

Or we could try the bees.

My mother actually tried to get me to do this! Believe it or not, I ignored her.

[agate]

Worms are really big just now, apparently. Here's news about another one being considered for MS--pig whipworm eggs:

Only registered and activated users can see links., Click Here To Register...

[Lyon]

oh, and i just tested positive for the jc virus antibodies, so it's doubtful i'll start tysabri. get busy gummies, and give us some relief!

I guess maybe it's more of a testament to the fear that a diagnosis of MS inspires than anything else but I always found it interesting that even though my wife is a city girl who I thought would be the last person in the world who EVER consider ingesting parasites, on the way home from the Neurologist visit in which she was diagnosed in 2006 she asked if "your parasites" would "cure" MS and I told her that I thought so, her only concern was where we were going to get them from.

As it turns out, in the US it's near impossible to attain a helminth infection so wasn't an easily considerable option and time has shown her MS to be pretty mild (or maybe her participation and being on the "real thing" in the Tovaxin IIb clinical trial had a positive effect on what would have otherwise been the course of her MS?) but at any rate she's been lucky enough not to experience progression in the time since diagnosis and so far has allowed us to sit on the sidelines and observe all facets of MS research.

[agate]

I hope you'll post about it if/when your wife starts her diet of worms, Lyon.

[Herodotus]

oh, lyon, do tell about the tovaxin trial! i've always thought it sounded like a great therapy. even tho i'm jcv +, biogen keeps calling me to see if i'm going to do the tysabri, or how can they help? i read one man's tysabri diary on-line. everything was great until the 12th infusion, when rashes, hives, & difficulty breathing broke out. for 2 weeks. and that's not approaching PML. as someone on that board said, "they put the harm in pharmaceuticals." to give it its due, some do fantascically well on tysabri. it's just that death thing (PML) i don't like. as woody allen said, "i don't mind dying, i just don't want to be there when it happens." is your wife still on tovaxin? are the trials still on? we'd love to hear.

as ever,

H.

[Lyon]

I had joined thisisms and not long before I arrived there had been some controversy surrounding Tovaxin. A young man had been diagnosed with MS and his father scoured the internet to find the treatment he found most promising and he discovered Tovaxin. Sadly the company didn't have enough funding to continue operation and the father invested enough money to keep the company solvent, became a shareholder and on the board of the company. His other sons were so excited about the improvement noted in their brother that they plastered the internet with praise of Tovaxin which could as easily be seen as attempting to improve the value of their father's stocks as spreading the word about their brother's improvements.

Regardless of the controversy I felt the science of Tovaxin alone merited my interest and I dug into it further. After diagnosis in Jan 2006 my wife went on Rebif but before she had worked her way up to full dosage it played havoc on her liver and the neuro pulled her off Rebif until her liver enzymes got back to normal.

By the time the neuro said that she could get back on Rebif my wife decided that she no longer wanted to feel yucky all the time and return to being a human pin cushion so she just wasn't doing anything about her MS.

Opportunely word soon spread that the Tovaxin IIb clinical trial was going to have a center 70 miles from us so my wife applied and was accepted into the trial which was a 52 week double blind/placebo trial of 150 registrants, 100 on the "real thing" and 50 on placebo. After the 52 week trial those willing could opt to enter a year by year extension phase in which all registrants would be on the "real thing" but before my wife could receive her first treatment in the extension, Tovaxin's parent company Opexa Pharmaceuticals brought it to an end due to lack of financial resources.

We later found out that my wife had been on the "real thing" through the trial and in truth my wife has experienced nothing of her MS since her diagnosis in early 2006. Conversely, I mentioned on thisisms prior to the trial that I don't know how the researchers hoped to identify advantages due to Tovaxin in that trial because the registrants were CIS/early MS with low/no disability. Problem is that those most of those people don't have an MS progression history which makes it near impossible to tease positive results out of a 150 entrant clinical trial, 100 of them on the real treatment.

Another thing to keep in mind with Tovaxin is that last I knew they were only able to isolate the necessary "myelin reactive T cells" needed to make the vaccine in about 50% of those with MS so even if it were 100% effective, which it isn't, that only helps about 50% of those with MS.

oh, lyon, do tell about the tovaxin trial! i've always thought it sounded like a great therapy. even tho i'm jcv +, biogen keeps calling me to see if i'm going to do the tysabri, or how can they help? i read one man's tysabri diary on-line. everything was great until the 12th infusion, when rashes, hives, & difficulty breathing broke out. for 2 weeks. and that's not approaching PML. as someone on that board said, "they put the harm in pharmaceuticals." to give it its due, some do fantascically well on tysabri. it's just that death thing (PML) i don't like. as woody allen said, "i don't mind dying, i just don't want to be there when it happens." is your wife still on tovaxin? are the trials still on? we'd love to hear.

as ever,

H.