PXP - Let's just agree to disagree

Non-Pharmacological Treatment "Alternative" Treatments
1

Boy there sure has been a lot of back and forth about this topic.

First off, hooray for Julie. I mean, that woman suffered for so long and God bless her that she is finally living her life again. Every single one of us wants that or we wouldn’t be here. Julie was very nice to me and many others when we first started coping with this illness and found this forum. I will always appreciate that, as I know others will as well.

For the life of me, I cannot understand why people on this forum are having such a hard time just discussing this topic. I, for one, have many questions about PXP’s true power as I have not tried it . I began here in August and at that time Julie was taking Effexor. In the middle of September, I got an email through PM (which I still have on my computer) that Dr. Hain had switched her to Pristiq. In documented presentations from Dr. Hain, he says that prophylactic meds of all kinds can take weeks to months to work. Now, I know that he told Julie something like 2 or 6 weeks, but in his papers he says otherwise. She began PXP in Nov at some point and posted her “My ship has landed email” on my 40th birthday, Dec. 9th. I immediately wanted to purchase the product. But something, either rightly or wrongly, stopped me from doing that. I knew she was still on other meds. It is encouraging that she is now off all meds, as at that time she was not. This makes me think that possibly there is something about this product. I would LOVE a cure - a sure thing. I stupidly shelled out $2000 on a program in the fall that promised this. It didn’t work for me. I stupidly and disparately shelled out more cash only months ago to a homeopathic guy who had “cured” people of all things great and small. So of course I am leery about believing anything especially when there is a high price along with the promise. But God knows, I would mortgage my house to feel better.

But taking this discussion personally is crazy. I really like Julie and just because I am questioning anything she is doing suggests nothing to the contrary. Just because all of us are not taking PXP says nothing about Julie in any way. So please, let’s get back onto making this a forum where facts are shared. For everyone that really believes in PXP, I hope that you will start it tomorrow and come back here and share your success with the skeptics. Just like if I try Verapamil and have good luck, I will share it with you. And at the same time share everything else I’m doing such as seeing a chiro and and an acupuncturist and taking Vitamins.

So, here’s my challenge… Can we please stop arguing? The skeptics are going to remain that way until there is more proof of success and the believers hopefully will try the PXP for themselves and share their news. I just feel like every time I come on here, people are fighting the same fight. I feel like crap so much of the time, I don’t want to come here and find people bickering. Aren’t we all suffering enough?

Thanks for listening.

Molly

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My dear sweet Molly … consider yourself hugged. Thanks for all this; I feel the same way & would like to ‘flush the toilet’ of bad stuff & just get back to communicating & considering & sharing & laughing & all that.

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Hi Molly,

Thanks for your share and i agree with you 100%. Like i told Julie…i think she should Post again and share all of her positive stories…back her self up on any questions. I’m sure Julie has nothing to hide…what i know of her she’s very honest. Many of us have reservations about Pxp and rightfully so. I tried accupunture many years ago for another condition that i have and spent alot of money to no avail. So even though i believe Julie is doing so much better due to Pxp…i can’t help but have some reservations. I have asked Julie to return to the forum and post…and if she does i would hope people can listen and ask questions and not be sarcastic and argumentive. That is not going to get us anywhere. If i were Julie and feeling great…back to 100%…i would want to share my story to the world! Julie…we want to hear from you!

Joe

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Okay Joe, one last one for you:

Molly, you always were a dear soul,

The reason I quit posting on this forum is because I was treated badly by the moderators. Scott started calling PXP snake oil early on, right on the public forum. I posted a lot because I was so excited about how well it was working for me – I would get a “detox”, like a day of intermittent pains in my eye followed by a feeling of well-being and a very nice lifting of dizzy symptoms – ahhh!! Like heaven. A better feeling than any preventative ever gave me – it was accompanied by an overall feeling of well-being. You have to experience it yourself to understand.

But Scott keeps calling it snake oil, at the same time he was asking that we all be adult, tolerant and considerate of the treatment paths others had chosen.

God I was sooooo sick I considered suicide, and I was finally, after years ! feeling sooo good. For those of you who don’t know my story I was bedridden for a full year, wanting to die. The preventatives got me out of bed, but not out of the house. PXP got me dancing and driving and 100% YES 100%, dare I say the word: CURED!

Anyway, Adam finally banned me from even talking about PXP. The ban was lifted after I PM’d him. But it was too late. I couldn’t take Scott’s humiliating me in public with his snake oil comments. I felt like the moderators of this forum had no respect for me, and I’m a highly respectable person. I decided to go back to my real life, where people know who I am and treat me accordingly.

Sorry, but Molly is right, this forum is always fighting about something. Oh, that’s another thing. Scott used to blame me, quite unfairly, for stirring up controversy. Well you can’t blame it on me this time, can you?

It is a shame, because I think anyone here who knows me would agree, I had a lot to give to this forum. I see here a thread going on about dental problems and migraine. The trigeminal nerve branches after it leaves the skull and one branch runs along your jaws. So yes, you may have pain in your teeth during a migraine. That’s why some people work with mouthguards so as not to stir up their trigeminal nerves at night.

When I was sick, if I had pain in my eye, I used to rub Emu oil on my temple, right where the trigeminal nerve leaves the skull, near the eye. Emu oil, which you can get at drugstore.com, is a natural anti-inflammatory and would calm down any tenderness, in my teeth, in my eye, any sign that a migrainous process is going on. Brian, are you using that Emu oil yet?? :slight_smile:

Remember when things were easy? We were all just sharing our stories and looking for a way out of this hell on earth and go dancing on table tops!? Now, I’m told, people are afraid to post about alternative stuff – they’re afraid they’ll be laughed at. They are right to be afraid.

(Molly, your dates lag a bit only because I waited to post what I was doing, after I had started taking it and after I was sure I was well. Also, what Hain publishes and how he actually treats are different, regarding Pristiq and regarding Topamax. He was very clear on the phone that I would get no more from Pristiq after 4-6 wks. I remember the conversation because he asked me if I was happy with the way I was and I started to cry)

I’m not sure this post was helpful in anyway, and I hope it doesn’t just stir things up again, but people have been asking me to post and, in the words of Forrest Gump “that’s all I have to say about that” :slight_smile:

That’s it for me – whoosh! I’m gone! (I won’t be back to check for responses. It’s my easy way out.)

~ Julie

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P.S. I couldn’t help myself. My husband just got back from the dentist. He USED to have real bad gum disease. He’s been on PXP for six months. The hygienist about fell over. She said, your gums! You don’t have periodontal disease anymore! I’ll ask him when he gets home whether he told her why.

I guess I should also mention that doctors are sending their patients to me to get this stuff. The word is out because it works. It cures everything. A little boy with leukemia. I told the parents it was too late for PXP to help him, his prognosis was weeks to months. they said: “the doctor ORDERS IT!!!”

What can I say?

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Hmmm…I wonder if I can take a medical expenses tax deduction if I can get my doctor to write me a note? :wink:

Julie, I’m glad you came back to give us your update. I’m also glad you’re still feeling great! Whether we believe in PXP/homeopathics or not, we have ‘one of our own’ who’s had some great results. Regardless of exactly “how” or “what” you’ve done to get your life back, I’m very happy for you and extremely jealous. Hoping to repeat your good progress myself …

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I don’t post on here often but do read the forum a lot having lived with this frustrating condition for nearly 7 yrs. I have followed the threads on PXP with interest.

I feel compelled to say something as what started as an immensely well-meaning post from Molly wishing to stop the arguing has now turned in to an attack on Scott.

Scott does a fantastic job of moderating this forum. He is also someone I now know well both on and off the boards. Despite, or maybe because of, his science background, he is totally open to new ideas, suggestions and alternative therapies. He has never belittled anything I have tried and I have tried many alternative treatments, as has he.

Scott has a big heart and his major concern is to make sure the advice given on this board is measured and impartial. Claims were being made about PXP being a cure from someone who was selling PXP. These claims have been made again in this thread. It is this that concerned him and in my opinion, rightly so.

Were I to be helped by an alternative treatment (and I have been on occasion) I would be eager to show enthusiasm for it and to share that information. However I would be careful to qualify any enthusiasm I showed with the disclaimer that time, placebo effect, other drugs etc etc… may have played a part. Without the scientific data to back up certain alternative treatments there is simply no knowing whether it is definitely the treatment that has helped. It is important that people who are often desperate or may be new to this condition are very aware of other factors that could be at play before they spend their money.

Julie, you adopt the stance here of the unfairly maligned victim, but this strikes me as somewhat disingenuous. It’s not like you’ve ever had any problems saying your piece or standing up for yourself, this latest email is evidence enough of that. And for the record, you may not have been on the board for a while, but even in your absence, whenever there is controversy, you are never far from it.

I dislike arguing, but on this occasion I couldn’t sit back and watch someone I know to be totally well intentioned and caring have mud slung at him.

Hannah

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Thanks for that Hannah.

The only thing I want to add is this for the rest of you guys on the board: don’t buy into the fear-mongering nonsense written in the diatribe above. Everyone here is free to openly discuss whatever treatment they like.

This particular case is not anywhere near being in the same league as just normal conversation about an alternative product. The person above not only claims PXP cures MAV and now gum disease AND leukemia (on top of metabolic syndrome, heart murmurs, irritable bowel and multiple sclerosis), but also happens to be a major seller and capitalises from this very expensive unsubstantiated cure-all product – and all the while has not and does not disclose her true medical treatment. She’s even had the cheek to plug the product again.

I feel the same way & would like to ‘flush the toilet’ of bad stuff

Consider it flushed and the nutter banned.

Thread closed.

Update 31 Jan 2010

“PXP got me dancing and driving and 100% YES 100%, dare I say the word: CURED!”

For those of you who are interested in following up on this fruitcake quack, she recently exposed her con on her own personal blog. She now claims that it was some other garbage she’s peddling called ASEA that cured her MAV. As suspected it was all a money-making scam.

Scott