Luke has not been able to access the board here while in SE Asia for some reason but asked that I post his results using PXP. He got no benefit from it whatsoever and feels it was a waste of his time and money. He gave it a good few months from what I gather.
I’m starting to think the Migraine Program is the same although I do know a few people who claim to be nearly headache (but one not dizzy) free. At least the Migraine Program is much more plausible then an over-priced mixture of rice and seaweed which claims to cure every ailment known to man. The Migraine Program people do look at the state of your biochemistry and attempt to alter hormone levels, but a cure? Hard to swallow.
I’m always leery about someone claiming a CURE for migraine,
There is no such thing!
If there were a cure, or even something close to that, there would be a worldwide media stampede.
seaweed? :lol:
Well, actually, they (the PXP makers) haven’t even MENTIONED migraine in their material (and thus obviously haven’t claimed to be a cure), and as far as I know, the migraine program DID claim that they can cure migraine, no?
Also, Spirulina (dietary supplement) - Wikipedia actually has some science behind the claims (this the “seaweed” part, except I’m pretty sure these are smaller algae). A pubmed search for spirulina gives me 745 matches.
Good point. I should remind him of this although he probably is.
Well, actually, they (the PXP makers) haven’t even MENTIONED migraine in their material.
I had some material sent to me that claimed a 70% success rate for migraine. Of course there was not a scrap of evidence to prove it … apparently the results of their “trials” was being “held back” for some reason. Ridiculous. If you have a product that works, and there is evidence, you would very quickly make it available to the public especially given the profits they’re making. Nuff said. Buyer beware.
Thats amazing. I am wondering if it could be that the seaweed stuff has iodine in it, and maybe it helps the thyroid if it is low. Or maybe there is something else in the Pxp thing. Is anyone else taking it do you know.
Christine
or maybe it was the pristiq she started at the same time, which dr hain gave her?
— End quote
Not at the same time, several months earlier, and the improvement had leveled off months before PXP.
You might get the impression I’m defending her (and PXP). Well, what the heck. I have NO idea why “everyone” started hating her all of a sudden. I saw nothing but nice, courteous posts. :?
I agree with Tranquillity. I personally am just interested in finding something that makes me feel normal again … like the rest of my life is not going to be on-again off-again hell. If Julie’s found something that helps her, I want to know more about it. If ANY other forum member finds something that gives them substantial relief I want to know about that, too. It’s ultimately up to me to decide who/what to believe & who/what to ignore.
As I understand it, the moderators felt like the posts were getting too close to selling a certain product for personal gain. Whether I agree or disagree with that is irrelevant. The moderators make the rules - rightly so. If I want to be able to post, etc., on their site I have to play by their rules. I expect creating & “moderating” this forum takes a lot of time & effort … I wouldn’t want the job.
Not meaning to stir up past controversies here … just wanted to add my two cents. And I hope is Julie’s out there watching that she won’t take any of this as a personal attack. Everybody’s got an opinion & hers is as valid as mine or anyone else’s.
lol im not attacking her, I dont even know her so how could I. Im just saying that for me there must be some other explanation to her claim of pxp curing her than that actually being the cause.
That doesnt have to mean she was after our money or whatever. But for me to believe in such a leery product, I would have to see it firsthand. I wont believe what someone I dont even know says on the internet, just as I wouldnt believe someone on the internet saying God healed her from a braintumor, and if I only buy that blessed mineralwater for $$$$$$$$, ill be healed too!
“…Im just saying that for me there must be some other explanation to her claim of pxp curing her than that actually being the cause…” — Begin quote from ____
So you’re of the opinion that her ‘success’ is only in her mind? I wish I wish I wish I could see into the future about five years & find out if she’s still doing well!! It gets so frustrating … trying one med after another, only to have it fail or only minimally help some of my symptoms.
lol im not attacking her, I dont even know her so how could I. Im just saying that for me there must be some other explanation to her claim of pxp curing her than that actually being the cause.
That doesnt have to mean she was after our money or whatever. But for me to believe in such a leery product, I would have to see it firsthand. I wont believe what someone I dont even know says on the internet, just as I wouldnt believe someone on the internet saying God healed her from a braintumor, and if I only buy that blessed mineralwater for $$$$$$$$, ill be healed too!
:roll:
— End quote
The difference here is that a university has done studies on PXP, and despite them not being complete, they show with zero doubt that it’s better than “rice and seaweed”, at least for stuff like diabetes, triglycerides, dialysis amount etc. I don’t feel good enough to dig them up right now, but they do exist.
I have NO idea why “everyone” started hating her all of a sudden. I saw nothing but nice, courteous posts.
Nobody hates Julie or anyone for that matter. I’m not sure where Julie went and yes, she posted a ton of great, helpful advice for a lot of people over a long period of time and it’s a shame she might have left the board. None of this has anything to do with anyone per se, but rather we are trying to get to the bottom of whether or not PXP is an effective treatment for MAV. The fact is, this product costs A LOT of money and makes promises that, in my opinion, are not grounded in any evidence-based science. I have yet to see anything that shows solid unbiased evidence for this product. I hear about university studies on PXP yet there are never any results made available. If this stuff was really this good and a cure-all, you can bet it would be in a proper scientific journal where it would have passed a strict peer review process. I believe Julie has a degree in biochemistry and she would know this process and how important it is before anyone can make such extraordinary claims. Extraordinary claims require compelling evidence. The makers would be receiving a Nobel prize if it were true given the claims. Unfortunately, the stark reality is the websites for this product are your classic cure-all, buzz-word-filled sites. Everything about this stuff points to a money-making scam by the makers (note: I’m not saying this is Julie’s intention; I think she does actually believe it works for her. Anecdotal evidence, however, is not good enough).
Not at the same time, several months earlier, and the improvement had leveled off months before PXP.
This is incorrect.
Posted 22 Sept 08: [Hain] gave me a slightly increased dose of Pristiq. I’ve been on it for a week and I will admit to some improvement. And any improvement is good, no matter how little.
That means Julie started Pristiq on 15 Sept. The “boat landed” on about 10 Dec. That’s a total of around 11 weeks. Hain states clearly in a presentation given in May 2008 that migraine meds – including Pristiq - can take “weeks to months to work”.
The difference here is that a university has done studies on PXP … they do exist.
If you have them, please post them when you feel well enough. I want to see their work, methodology, analysis etc.
Here’s the bottom line: Luke is not on any medication for MAV and tried PXP as a stand alone treatment. There was no effect. From what I gather (and correct me if I’m wrong), Julie uses Pristiq 50 mg daily which is like using 100 mg of Effexor daily (remember Hain says that some people get MAV relief from just 1/3 of 37.5 mg). She also uses a benzo 3X daily. Both benzos and Effexor/Pristiq are HIGHLY effective MAV treatments. We all know this. Hain writes about it all over his site. Both are proven treatments and have been substantiated by double-blinded placebo controlled clinical trials that were subjected to peer review. I simply don’t buy that PXP is responsible for her feeling well and it concerns me that others might be taken advantage of by throwing away money that could be spent on real effective treatments instead of snake oil. Let’s face it, when we feel this lousy we become very vulnerable to these sorts of claims and products promising wellness again.
It’s been a while since I’ve been on as I’ve been travelling around the world trying to get on with my MAV life. Lately Ive been feeling like crap.
PXP didnt work for me, although I had a few good days here and there (coincidence?). If it worked for others good for them - at least I tried it!
I’m thinking of starting Verapamil in a few days when I get to Bangkok. I need to work out my dose, but appraently if it works you can see a difference in a few weeks. If this fails then it’s the long 4 month experiment with Topamax. And if that fails, well who knows?
To think I was symptom free once eh? I wish my same meds worked again but that would be too easy!!!
Hope you are all doing better and anyone with experience of Verapamil and success please post!
To think I was symptom free once eh? I wish my same meds worked again but that would be too easy!!!
Hope you are all doing better and anyone with experience of Verapamil and success please post!
Hi,
You mentioned you were symptom free once. What changed? I mean, were you taking certain meds that stopped working or did you go off the meds, find that the MAV returned and that those same meds no longer worked? What meds were you taking? Thanks.
