I have just joined the board and firstly wanted to say hi and introduce myself.
My name is Atheana, I am 46, happily married living in the UK. Dx'd in '95 RR and as is often the case with this obnoxious disease have experienced aggravated symptoms over the years. Mostly what's affected with me is my balance and walking - both of which I can confidently say are crap lol I'm not on any dm drugs save LDN, which I've been taking on and off for about two years now. Unbeknownst to me, it did stabilize the condition which of course I only realised after I stopped taking it due to a new treatment, Esperanza Peptide (you are actively discouraged from taking LDN at the same time as taking the peptide).
This leads me onto the purpose of this thread. It is my hope to save unsuspecting souls the grief I experienced in investing in and taking the Esperanza Peptide product. In my determination to make as many people as possible aware of this red herring, this is not the first time I've shared my experience in a forum. However and unfortunately. it has incited some fairly malicious replies. I am half convinced those offering up these diatribes are in the employ of Esperanza Peptide!
I'm sorry it's so long in the tooth, however I tried to provide as much detail as I could in the hope of getting the message across.
Esperanza in Spanish means hope. Maybe the name alone should have lit a few light bulbs.
I first heard about peptide treatment for MS about a year ago from a friend in South Africa. My initial reaction was ‘why are these treatments always so damned expensive?’ First there was the stem cell treatment by ACT, amongst others, which varied in price from $10,000 to $20,000, depending on how hard you bargained. Now there was the peptide for a mere $10,800. Then I read about Esperanza Peptide in Pathways, saw the testimonials and perhaps, naively so, thought maybe there’s something here after all.
So I rang and spoke with Gerry Gallagher. The first thing I asked him is what happens if it doesn’t work? His reply was and I quote, ‘I’d be very surprised and immediately look to see if there was something wrong with the peptide.’ During this conversation, Mr. Gallagher enthusiastically explained about the peptide, its effect on the nicotinic receptor and how that effect in turn helped enable the transmission of messages from the brain to the various muscle groups in the body. He also spent some time telling me about a chap called ‘Eddie’ who was – in his words, Esperanza’s guinea pig and had been on the peptide for some 20 odd years. Apparently Eddie was a changed man with the peptide; to quote Mr. Gallagher ‘when Eddie used the peptide you wouldn’t know he had MS, when he didn’t he was all over the place’. By the end of the conversation, I was ready to give it a go. More fool me. At no point in this or any other conversation I had with Mr. Gallagher did he stress or indeed even suggest that the peptide was not designed to recover function nor as he is at pains to point out these days, ‘[does it] …necessarily give back function which is a huge bonus’. On the contrary. There was every indication if not outright implication that the peptide would offer an improvement in (MS) symptoms, i.e., there would be a recovery of function.
Based on this conversation and what I had read in Pathways, I decided to go for it. Following this conversation I spoke with my friend Kay and told her everything I had learned. Kay too has MS and was recently diagnosed SPMS. I asked her if she would be interested in going for the treatment with me and she explained that her finances wouldn’t permit it. So knowing the effects this insufferable disease has on a person’s quality of life and believing (as I said before, perhaps foolishly so) that the peptide could somehow give a person their life back, I suggested I would pay for both of us to be treated in Troon.
I confirmed with Gerry Gallagher a date for both Kay and me to go to Troon and asked him if he would provide me with a receipt once the funds had been received via bank transfer. To this day and despite having asked no less than four times, I have never received a receipt for the £10,200 I paid to Esperanza Peptide for the treatment for Kay and myself.
Kay, I and our respective partners set out on 19th June by car for our 1:00pm appointment in Troon. Because planes and me don’t mix terribly well, we opted to drive – an 8 hour drive! Despite our satnav attempting to take us into the back of beyond, we eventually arrived and were seen at the appointed time.
Kay and I were seen together and underwent a host of tests which by now I’m sure you’re familiar with having read about them from others. I must say having sat in a car for eight hours, I was stiff as a board and could readily have used a good dose of WD40. Needless to say, by the time it came to do the tests (standing, balancing, walking) I was a basket case from having sat in one position for so long. It’s pathetic how you can become so exhausted from doing absolutely nothing!
Kay and I did the tests and were duly timed. Now as anybody with MS knows, recovery from stiffness, exhaustion and muscle fatigue is generally found with rest and repositioning. Therefore, when Kay and I first arrived, having sat in the car for 8 hours, we were hot, bothered, stiff and exhausted. The office we were in was terribly warm and we had to ask for some water and the windows to be opened. After resting for a bit whilst we waited for the initial dose of peptide to do its stuff, we were tested again and lo and behold we were both a few seconds faster. Why am I not surprised? If you’re knackered and do a physical test of any sort, you’re going to be crap. Rest for an hour or so and give your muscles a chance to recover, take those same tests again and you’ll do ‘better’ (even if ‘better’ is qualified by a matter of seconds).
Gerry Gallagher and co’s persistence in saying the peptide works based on those few seconds of so-called improvement in speed, coordination, balance, whatever is rubbish. How ‘works’ is defined is another matter. But if you should mention to Mr. Gallagher that the peptide is not working, you will have pointed out to you that it did work – based on those few seconds I mentioned earlier. Can you imagine the medical establishment approving, supporting or prescribing a treatment based on a few seconds symptom improvement? Not likely. The fact is the peptide, or anything else for that matter, works if there is a noticeable and sustained improvement, i.e., a change in function. The fact that Mr. Gallagher is stating something totally different now is perhaps not surprising given the number of people who are coming forward saying the peptide has done bugger all for them – myself included.
However, I digress. Back toTroon. Kay and I finished there about 4pm and headed back home. For myself, I felt no difference in having taken the peptide – not that day nor any day thereafter. In fact if anything, I am worst now than I was before I started the peptide. Kay however, soon began to experience contra-indications; namely, her walking (which was relatively fine with two forearm crutches) became a shuffle. Within 36-40 hours of beginning the peptide treatment, she lost the pain in her back and neck which she had lived with for more than 15 years. However, along with the loss of pain she also lost all feeling in her legs. They became totally leaden and she had to drag them around from moving her hips. In my opinion, that’s quite a serious contraindication.
As for myself, on 24th June I advised Gerry Gallagher there had been absolutely no change/improvement following the peptide treatment. His reply? ‘All bodies and the effects of MS in each body is different’. Thank you Mr. Gallagher, I wouldn’t have known that had you not told me. Interestingly, there was no mention of checking to see if there was something wrong with the peptide. So much for initial statements and assurances.
Some reading this may say I sound bitter. I am. Not bitter perhaps as much as highly annoyed. I don’t like being lied to. When Kay and I were up in Troon I specifically and pointedly asked both David Munchak (the EP doctor who saw us) and Gerry Gallagher if there was anyone who the peptide hadn’t worked for. They both were unequivocal in their answer, no. We now know this is not true. There are many cases coming to the fore now where people are clearly stating they feel they have been misled and ripped off as the peptide has done nothing for them. I am aware there are people for whom the peptide has worked, and for them I am truly pleased. What I have a problem with is not that the peptide works for some and not for others, but that I was told and assured that the peptide worked for everybody. More importantly, the nature of that ‘working’ wasn’t something which happened silently within the body, but rather was that which could and would be felt and noticed by the user. So, don’t spend an hour on the phone with me, singing the peptide’s praises telling me what a difference it will make or look me in the eye and tell me the peptide works for absolutely everyone when you know that not to be the case and then sing a different song when everything goes pear-shaped.
So in effect what I am most annoyed about is this. I was deceived. How? Firstly, I was led to believe that use of the peptide would – not might - restore some degree of function. Certainly I was not told that if it did, that would be a bonus. In short, I was not told then what is being espoused now, namely that the NeuroPeptide in the body is doing what it was intended to do initially (not necessarily give back function which is a huge bonus) but to hold back the ongoing progress of the disease in the body and to halt any new crises.
Secondly, when I asked if there was any case where the peptide had not worked, I was told no. I do not believe this to be true. By not being given all the facts as they are and not as they would best procure a sale, I was denied the chance of making an informed decision, weighing all the pros and cons in order to decide whether or not the odds were in my favour. Even being told that it works for some but not for others would have at least enabled me to make a decision based on the knowledge that it might or might not work. However, having spent £10,200 based on misinformation, yes I would say I am annoyed.
Moving on. For some inexplicable reason, you are told when going on the peptide not to take LDN at the same time. Interestingly enough the peptide people were peculiarly scathing about LDN and how there are no clear reasons why or how it works. Classic case of the pot calling the kettle black perhaps? I myself was using LDN up to a week before starting the peptide and had been doing so for about 1½ years. I can’t say I noticed any major improvement whilst I was on the LDN and did in fact get marginally worst over that period. However, since I started the peptide and stopped taking LDN the degree of deterioration has noticeably increased. Whether that’s due to coming off the LDN, adverse effects of the peptide or just the nature of this obnoxious disease, I will never know. I have now stopped taking the peptide and will resume the LDN. Whether I can recover lost ground remains to be seen.
Earlier, I mentioned a friend in South Africa, Shawn. Shawn is one of the lucky ones. Back in July, I sent.him a bottle of the peptide to try as he was considering going down that road. Rather than him wasting his money should it prove not to work as it did for me and Kay, I sent him a sample bottle which enabled him to first see if this was a viable treatment. And it worked – wonderfully so. As a result Shawn has now decided to go the peptide route. However to do so he would first have to send money to Esperanza in the Bahamas in order for the doctor in South Africa to treat him. Unfortunately the South African government is making it all but impossible to send money out of the country. Therefore, I will be sending him Kay’s bottles and selling those I haven’t used. Interestingly enough in trying to arrange overseas payment, Shawn needed to present an invoice for the peptide. Despite making repeated requests to Mr. Gallagher, he was unable to obtain one. This business of not being able to obtain receipts or invoices has left me wondering. As an aside, this situation in South Africa is unfortunate for those there who will wish to go on the peptide as sending money to the Bahamas to pay for it is nearly impossible.
Meanwhile Kay was asked by the peptide people to do a number of saliva and urine tests. However events conspired against her and because of the exactitude in timing required (3pm every day), she was unable to take these tests straight away. She then began using HRT and by sheer coincidence achieved an amazing recovery in her walking – she is now no longer using crutches! When things eventually settled down in her life and circumstances finally permitted her to take the tests she was understandably reluctant to do so as taking the peptide again would have totally set her back. She had tried taking the peptide 3 or 4 times and each time experienced the same contraindications. Kay was in touch with both David and Gerry each time she experienced a set back after using the peptide. That Mr. Gallagher had the audacity to later claim that Kay’s heavy legs and her setback was not a result of the peptide (as reported in the last issue of Pathways) is unforgivable. Nonetheless, when Kay explained her reservations about using the peptide again (she would go from no crutches to not being able to walk) Mr. Gallagher dismissed these concerns and encouraged her to take the tests anyway. He didn’t seem to appreciate or care that by doing the tests (and taking the peptide) she would not only be back on crutches, but be unable to walk full stop. Personally, I found Mr. Gallagher’s cavalier attitude in this respect well out of order.
This lack of sensitivity is unfortunately par for the course it would seem. Kay sent Mr. Gallagher the following email in a bid to find out exactly what these tests would achieve as there is only one peptide and if it didn’t work, then it didn’t work. Or worst still, if it caused contraindications, then how would carrying out tests change that fact. She wanted also to know what they planned on doing with the test results:
Firstly, what exactly will you be testing for with the samples? I know that you said hormone levels and neurotransmitters in a previous e mail - but what will this mean in simple terms? If for example, you find a reading which shows high levels or too low levels in one area or another, has research been done previously which will indicate either a way forward or a scenario where I will be unable to take the medication? Is there an additional supplement I could take, or a different peptide available which would be suitable in this instance? (As I understood it originally, there was just one treatment, dosage etc).... so what will happen if I cannot continue to take it because of the contra-indications? What will you do with the results of the tests? Is there on-going research regarding the peptide, which my results would be a part of?
Kay has told me she is aware that others have been asked to and have indeed taken these same tests and have yet to receive their results, despite months having passed. Interestingly enough, if the peptide is not known to cause adverse reactions (as stated by the EP people) and indeed works for everyone (as stated by Gerry Gallagher) then why have others taken the tests?
At any rate, Kay never received a reply to her email. Mr. Gallagher has repeatedly stated that he returns all phone calls and emails. He may claim to do this, but in actual fact, he does not. I myself sent him emails and left phone messages which went unanswered, I know Shawn has and now Kay has as well.
I told Gerry Gallagher in our first telephone conversation that if the peptide worked for me – in the way he intimated to me then, not what he’s proclaiming now, then I would be EP’s biggest advocate and shout its efficacy from the rooftops. Conversely, if I found that I had been sold up the swanny and the peptide proved to be the original snake oil (irony is that it is in fact derived from snake venom), then I would not hesitate to make my views known. He concurred. Little did he know I meant what I said.
P.S. A final note to this long-winded saga. Shawn took the peptide for a month or so then ran out and had to stop until I was able to send him more. During this time he unfortunately got worst and feels he may have suffered a relapse. After about a month or so, he resumed taking the peptide but it no longer had any effect on him. He has now stopped taking it altogether as he felt it was doing nothing for him. I, on the other hand am now stuck with two year’s supply of the stuff as Kay returned to me her bottles (as originally I was going to be sending them on to Shawn, but that is no longer the case). There’s a very grave lesson to be learned from all this – only fools rush in.