I’ve just received my LDN prescription by post, as normal, and in the package is a leaflet re a treatment for Protomyxzoal infection, which is apparently a recently found blood-bourne parasite. There is also a form which states I requested this info and details of how to get the treatment which costs £275. I did not request this. I googled “Protomyxzoal” and “Protopac” and came up with not very much. The website address protopac.co.uk leads to a page on the LDN International web site and talks about the parasite and the treatment and says that thias is extremely new research and not published yet.
Interesting but I’m not ready to hand over £275 without a lot more information and a test to see if I have this parasite.
Did anyone else get this leaflet or has anyone else heard about this and what do you think?
I’ve just received my LDN, it had the leaflet in too and I definitely didn’t request it. I thought I’d google it but your post was the first thing I came across so haven’t got any further. I didnt realise it cost so much. It does sound interesting but, like you, I’m not quite ready to hand over so much money. I shall try and have a look for more info on it.
Thanks for your response - I get my LDN from Dicksons, like a lot of people so I would imagine others will get this leaflet too.
I’ve found a lot more information about it by putting “protomyxzoa” into google. Interesting stuff, but very early days. This parasite apparently forms strings in the blood, which can make the flow sluggish and hides from antibodies behind a fatty film. Which ties in with why ccsvi and low fat diets are helpful for symptoms in some people. Or so the information says.
Husband takes LDN also had this in the package. My first thought was if you found a cure for the worlds ills would you keep it to yourself and hope to make a few quid or let people in on the secret? I decided that as there was so little info in the leaftlet that it was probably someone hoping to cash in on another fad. Having said that no drug company is going to push for an all out cure or prevention as it is not in their interests and someone must find a magic bullet sooner or later.
The leaflet did mention about a low fat diet, and also mentioned about readily available medications. So going to wait and see how many people are cured before splashing out on the cash. Suppose its a combination of antibiotics, there is nothing for one person to see if it works - all I can say is that if I ever stumble over a cure I will shout it from the rooftops.
I’ve had a soft spot for spirochetes and protomyxzoa and such things for some time, and quite like some of the current [underground!] theories on protomyxzoa and the need for low fat diet.
Hi Peter - I’d be interested in what Paula says if you feel you can share it.
Hi Bonnie - I share some of your views, I’m caught between a good pinch of scepticism and a small pinch of hope.
Hi Lolli - “I’ve had a soft spot for spirochetes and protomyxzoa and such things for some time” - I’m loving that phrase!
Hi Zelda - I’m a bit uncertain as to what links we can post and what we can’t, but if any wants to read the trascript of the interview google “Protozoal Infection - the next big discovery?” and it should be top of the list. The web site is iadvocatehealth.org.
I am wondering why we can’t get tested for this protomyxzoa here in Europe, but there is a test in America. I certainly don’t think it’s a good idea to get treated for something I might not have!
lts much too scientific for me to understand but it is still very good reading - especially as it involves MS and other auto immune diseases - the CCSVI theory - and mercury in the body - all subjects we have debated on here - and now could all actually be parts of the MS jigsaw.
l urge everyone to look it up - and make what they can of it. - Even print it off and see what your GP’s make of it - especially as it can be treated with certain anti-biotics similar to what they treat teenagers with severe acne with. And a low-fat diet afterwards helps as this organism feeds on fat.
Dr Steve Fry - talks about how CCSVI treatment can give quite dramatic results at the time - but they are short-lived - due to Protozoal lnfection - so Zamboni was on the right track in recognising the blood/brain flow theory - but not the cause of it.
Before you all go rushing off to the vets, can I add a word of caution about Chinese whispers?
It seems to me there’s a little bit of the “Zamboni effect” going on here. One intelligent person says something about his preliminary research, a journalist interprets it, another renowned intelligent person reads and comments on what the journalist said, five journalists report on what the renowned intelligent person has commented, and suddenly the whole world’s talking about the same thing, but with no supporting facts other than the preliminary research results that have been ever so slightly embellished along the way.
That said, I really do think there’s summat in it. If I recall correctly without looking it up, it’s been a dozen or more years since pets (notably cats and dogs) were investigated as possible partial triggers/causes of MS, but certainly scientists had a hunch way back then that there was some involvement and were disappointed not to have proved the association… Facinating stuff, whatever!
The treatment is being offered as part of the research. Once there is sufficient evidence then I am sure it will be all over the press if it is remotely successful… How many reports have there been in the press lately of cures of different types being only a few years away. If people don’t try these things we will never know if they work. £275 seems a great deal cheaper than CCSVI. Personally I feel it’s worth a try. Having read the information in the leaflet and on fry laboratories website a lot of it does make sense. LDN has helped me and it costs a fair bit over the years but its been worth every penny.
Proper research NEVER charges its participants to take part. It is absolutely against all best practice principles for very good reasons, the main one being that the results would be utterly invalid.
No matter what the wording, leaflets offering treatments that one has to pay for are advertising. Nothing more.
Incidentally, I just put “protomyxzoa” into my University’s research database. Of the hundreds of thousands of papers on the database covering more than a century of research, there were precisely none with anything to do with protomyxzoa. In case anyone was wondering, that means that there have been no studies published on the topic. In fact, there haven’t even been any published letters (much easier to get published) or conference abstracts where up and coming research is discussed. It hasn’t even been the topic of a paper looking a hypothetical approach to anything, never mind MS! In other words, any theory relating to protomyxzoa is about as far removed from proper science as it’s possible to get. Of course, that’s probably enough to recommend it to some. Sigh.
I have sent for the Protopac and hope to start it asap. I won’t take the DMDs for ms as they do not slow the progression and have horrible side effects. The Protopac seems like a safe bet with already used antibiotics, anti malarials. Don’t forget, LDN is dismissed by so many Doctors and Neuros, has had no clinical trial for auto immune diseases but has worked wonders for me and many others. The Protopac is not funded by any pharma company and probably never will be, so that is why I am happy to pay for it, the same as I am happy to pay for the LDN. It might work, it might not. After 25 years of ms starting in my early twenties, I feel I have nothing to lose. Even if it does work it will take years to become widely accepted and available to all. When it was discovered ulcers could be cured by antibiotics nobody believed it, least of all the medical profession. It is now standard treatment. Science changes everyday and new things discovered all the time but unfortunately big pharma companies do not want treatments that will not make them loads of money. I am willing to give this a try, nothing ventured, nothing gained. It certainly won’t be any worse than what I have to go through everyday and may change my life. Someone has to be the first to try things so others can follow, I don’t want to wait another 10 or 20 years for trials to be approved and then not be able to get treatment because of cost. I know someone said there was nothing on their university data base about protomyxzoal, just because you couldn’t find it doesn’t mean there has never been any research. Dr Fry named it protomyxoal, maybe you looked in the wrong place. Nobody knows everything, keep an open mind, you may be suprised.
I’m not a scientist or doctor but I wouldn’t pay for something just because a particular organisation I didn’t like wasn’t funding it - that’s bonkers isn’t it?
I don’t think nuclear warheads are funded by big pharma but I wouldn’t buy a packet of 10
Oh well then, I guess I’ll just disbelieve all the evidence (of which there is LOADS) that DMDs do slow progression as well as reduce relapse rates, reduce the severity of relapses, prolong life span and reduce disability and jump on board with whatever crazy idea comes along next. As long as it’s not funded by those horrible pharmaceutical companies. After all, what do they know? It’s not like they spend billions on research and have their data peer reviewed by other scientists as well as thoroughly vetted by the likes of the FDA and NICE. It’s much more sensible to trust some completely untrialled drug to do the job. After all, no one makes a profit from that and no one would just join an MS forum just to promote their (choice of) drugs, would they? I’m sure I can trust them over all the evidence! After all, I’m sure real scientists prefer not to publish their work - all those frauds in research labs all over the world, publishing their findings so that other scientists can scrutinise them - I wonder how they can sleep at night!
And those nasty side effects - oh yes, it’s just terrible having to take paracetamol! It’s not like those injections are doing anything like keeping my MS at bay very successfully and stopping me from having back to back relapses and moving rapidly up the EDSS scale. Oh wait a minute! They are!
Oh gosh, rizzo, you are putting things so nicely. I saw this thread developing in a slightly different way. It is not the only thread to go the same way. The original post was a valid question. In the middle of the thread, up pops someone who has only joined the forum a few hours ago, trotting out the same old shpiel about how the new wonder treatment will offer a miraculous cure, and trotting out the same old arguments against the treatments that are proven to work. Funny, that.
So nickyah says:
“I won’t take the DMDs for MS as they do not slow the progression and have horrible side effects”
Which goes against what the MS Society says are the people who can benefit from DMDs:
“people with secondary progressive MS who are still experiencing relapses, and where these relapses are the predominant cause of their increasing disability”
We have been through the argument about reducing relapses being/not being an actual slowing of the disease. Personally, I have had no side effects from Copaxone - though I believe you have as somewhat different experience.
Then donamorison pops up plugging this new wonder treatment as well and gettingin a commercial for a Commeercial Home-care Provider in Ireland.
I would wonder about the value of a new discovery of a new micro-organism, where the only treatment is offered by the person who claims to have discovered it, and operates from the middle of a business park in a suburb of Phoenix, Arizona.