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$rules
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/15/2010 10:45 AM (GMT -7)   
Glad to hear Prof John Hermon Taylor's name mentioned. Met him last year; totally genuine and honest. He should have retired over 15 yrs ago but knows the cause, & is almost there with the vaccine...all with privately donated funds.

Johne's & Crohn's are pretty much identical in symptoms, common sense above all else...stop listening to your doctor & do your own research!

I got diagnosed 3 yrs ago & suspected milk to be the cause I had previously started drinking loads of milk throughout the day on an empty stomach. Doctor initially denied any link so did an allergy test & proved highly allergic to dairy all of a sudden. I came across Prof JHT's work.

Please, research his work; there's loads of info even from media sources like the BBC news & he's also been filmed at a lecture talking about it which is on on youtube. Type in MAP, milk, professor John hermon taylor; some combination like that.

PM me with any questions!

(had originally written this on another topic in response to a post by Nanners,but realised it was locked for some reason).

Post Edited ($rules) : 2/15/2010 10:48:38 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/15/2010 11:13 AM (GMT -7)   
Well I am Nanners and I did not lock the post. The forum administrator locked it down due to it getting too political and controversial. Many have different opinions on this subject, myself included. Personally I feel there are just too many variables for MAP to be the only cause of Crohns. JMHO

So as long as the post remains civil and polite to all opinions it will be allowed to stay. But should it become contentious again, it will once again be locked. Thank you for your understanding.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

$rules
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/15/2010 11:21 AM (GMT -7)   
no problem nanners, didn't really read the whole post, just saw your post about Prof JHT. Even if it's not the only cause, people should be aware of the links. Spoken to a few gastroentologists about the link (either in getting a new consultant or friend's of friend's) & it's amazing when they saw the link was disproven back in the 80s!

Out of interest, what variables are there?

cheers

willj
New Member


Date Joined Dec 2009
Total Posts : 19
   Posted 2/15/2010 1:53 PM (GMT -7)   
I have been in contact with Professor Hermon-Taylor and am going to visit him come the summer months.  I think it is important that more Crohn's patients read about his work and watch the videos.  I am no salesman, but prof JHT has done more work on MAP than anyone else in the world and I totally believe in his work and that of other Professors such as Tom Borody. 
 
$rules, how did u manage to meet Prof JHT, did u meet him at Kings College London?
 
 

Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 2/15/2010 2:53 PM (GMT -7)   
Most investigators will concede that Crohn's disease is unlikely a single disease entity and that, in all probability, Crohn's disease represents a syndrome with multiple etiologies. By definition, Crohn's disease is an etiopathic disease, i.e., it has no known etiology. Hence, if the etiology of some cases of Crohn's disease is discovered and defined (e.g., M. paratuberculosis-associated), by definition that disease is no longer Crohn's disease. Thus, if the association of M. paratuberculosis and Crohn's disease proves to be a causal relationship, those cases cannot, by definition, be Crohn's disease. The proper perspective is that some cases of M. paratuberculosis intestinal infection are being misdiagnosed as Crohn's disease.

This perspective is not trivial as it serves to circumvent and "rise above" the entire controversy. To state that Crohn's disease is caused by M. paratuberculosis is therefore likely erroneous and is, in large part, the driving force behind the controversy.

a quote from a site I cant link here because its against the rules

dodger84
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 2/15/2010 4:40 PM (GMT -7)   
$rules, I do think it's an interesting line of research and an intriguing possibility that there could be some truth to what Hermon-Taylor is saying.  I would not be so quick to jump for joy based on what he is saying/finding though.  One of the main concerns I have is that Professor Hermon-Taylor owns a patent for the vaccine he is trying to produce.  Of course, then, he wants to pursuade everybody that his research is extremely important and he has all of the answers.  I'm not saying that he is lying or fabricating data (he wouldn't have patented his idea and devoted so much time if he did not believe in it) but right now he is in need of funding and a great way to get funding is to convince people that there is a clear-cut answer in sight.
 
Others haven't been able to find MAP infection in Crohn's patients or reproduce his findings and suspect either sample contamination or analysis of isolated individuals with an outside predisposition to MAP infection.  Still others argue that MAP is found in patients with Crohn's as a secondary infection (due to immune suppression and/or compromising of the gut).  Crohn's does not respond to treatment for tuberculosis.  The arguement that Johne's and Crohn's are "pretty much identical in symptoms" is not really relevant.  It's hard enough for doctors to diagnose Crohn's disease (vs other GI ailments) so saying the symptoms are identical to those of other animals is a stretch.
 
Again, I'm not trying to launch an assault on his research because I think we will benefit from as much research as possible - whether it results in a cure or the elmination of a suspected cause - but scientists' observations can be skewed by their own particular theories and when there is a the added interest of profit from discovery this only enhanced.  I would be (pleasantly) surprised if a broadly effective vaccine results from this research, but I certainly praise and support his efforts in trying to find answers for us all.
 
But thank you $rules for giving me an interesting thing to investigate/research at work today and bringing this possible link between Crohn's and MAP to my attention.  I'm reservedly excited to see how things turn out with his research.
 
 

willj
New Member


Date Joined Dec 2009
Total Posts : 19
   Posted 2/15/2010 4:51 PM (GMT -7)   
Even if he does hold a patent, if the vaccine is useless then all the research and work put into it will have been a waste of time and everyone will ridicule his work.  I can't see that happening to be honest - considering Prof JHT was the doctor who came up with the Clarithromycin, Rifabutin , Clofazimine cocktail to begin with.  He has seen Crohn's patients without hope get better using this combination!!

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 2/15/2010 5:01 PM (GMT -7)   
I think that at this point MAP is most likely the cause of Crohn's disease, at least in a substantial subset of patients. Koch's postulates have been fulfilled supposedly. It's the simplest explanation for what's going on (a more complicated one would be less likely). MAP has been proven without a doubt to CAUSE Johne's disease, which is at least grossly very similar to Crohn's though the pathology is not identical. Before Crohn's was a common diagnosis, it was often misdiagnosed as tuberculous enteritis from mycobacterium tuberculosis (not identical to MAP but in same species).

It's true you have to be very wary about theories, especially when the cause of this disease has evaded researches for decades. I acknowledge that part of me wishes this is the causes. It is something tangible that I can blame for what has happened to me. We definitely need more research to prove/disprove this once and for all, but we must acknowledge that MAP is beyond a reasonable doubt the cause of Crohn's.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


dodger84
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 2/15/2010 5:55 PM (GMT -7)   
willj - I agree that JHT is not pursuing something he does not believe in and he is not wasting his time by having the patent and doing this research. However, time and effort spent researching something does not promise it is the ultimate solution. (in my eyes, whether he is right or is wrong, his research is extremely useful and beneficial to us) He MAY be right and he MAY be en route to a solution... but even nobel laureates are wrong sometimes. What I am saying is that I am not ready to abandon my current treatments just yet. I know you are not suggesting this either but my point is that there is still a gap between where he is (and all scientists are) and where he needs to be for everybody to celebrate.

jp - I agree, it's an elegant and tangible description of something that is otherwise not understood. I would not be shocked if there is a causal link between MAP and Crohn's but I would not be surprised if there is simply a coincidental link. It is still up in the air and only more work on this and other theories will provide answers.

snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 2/15/2010 6:07 PM (GMT -7)   
I am inclined to think that MAP isthe cause, or a cause of Crohn's Disease - or a proportion of the cases diagnosed as Crohn's Disease - BUT I would take issue (politely I hope ! smilewinkgrin ) with a couple of the points made here. idea Consider me playing Devil's Advocate, in order to keep myself honest !
nono Koch's Postulates have not been met - nor are they ever likely to be. This is because Koch's Postulates demand, amongst other things which I forget - that the proposed pathogen must be isolated from the host, cultured in the laboratory in vitro, then used to infect a healthy host which will show the symptoms of disease, before finally being eradicated which then causes the host to return to good health.
As ethics committees quite rightly frown upon the idea of infecting healthy people with diseases that currently have no cure, if MAP is ever proven to be the cause of Crohn's Disease using Koch's Postulates it will be once the matter is academic - ie, once an effective treatment has been found. In actual fact, it is unlikely that even after a treatment is found, an ethics committee would allow infection of a healthy person with what they believe to be a pathogen - something might go wrong. yeah
I'd agree very much with dodger's second paragraph, insofar as I can see that these scenarios are plausible possibilities, and diagnosis of intestinal disorders is murky enough that going cross-species is bound to be iffy.
Furthermore - and I say this with all respect to Dr Hermon-Taylor, whose conclusions I do after all tend to agree with - it is a known effect, that those who are more committed financially or emotionally to a medical or research project, will find that their attitudes are skewed by this. They may still be correct - but the relative weightings they give to various variables and premises will be affected by the emotions they feel, regardless of how flawless the logic of their reasoning is otherwise. This is why at least one British medical journal, having discovered this effect in large measure amongst supposedly objective doctors contributing influential articles on treatments and drugshtey were involved with, now has a strict policy of not accepting such papers. Quite simply, the bias was there and could not be eliminated even by absolute paragons of objectivity who were trying to do so - so they decided that the only way to ensure objectivity was to ensure no links.
Personally, I think eyes I am fairly objective - but only as long as I doubt what my conclusions, and the effectiveness of even that I doubt...if you see what I mean. wink
The quote that Escelador gives is one that I can quite see being true. It would explain a lot, and it is a situation that I think has been repeated in medical history time and time again, down through the ages. (Early Hellenic work on diagnosis of menstrual problems, and Medieval thinking on scrofula and leprosy are good examples.) The key to ending the confusion in all cases ? A clearer understanding of the processes at work. (I'm not holding my breath. shakehead)
Taking off the Advocate's cap, I would say one thing in favour of the MAP theory. It may not be pertinent in this case, but I am firmly convinced that the most common mistake in the world, made by everyone daily, day since time immemorial, in all cultures and classes, irrespective of education and wit, is to concentrate on details as soon as confusion begins, instead of taking a large mental step backwards and looking at the context. Context decides everything; see the similarities and differences between a situation and its fellows, and you are far past halfway to recognising the truth. Although at the end of the day experiments must be done to prove or disprove assumptions and findings, perspective is rarely if ever the poorer for including more information, even if it does seem irrelevant initially. Time and again, breakthroughs in intractable questions in biology or medicine have been made by looking at a wider picture than usual and thus seeing mistakes that have been made, and errors of judgement or belief that have resulted. (I'm thinking here of Helicobacter pylori, and the theory that no bacteria could live in the acid of the stomach.) The problem with in-depth expertise is that it deprives one of breadth of comparisons.
Context is what epidemiology provides us with for Crohn's, when the immunology and microbiology looks fuzzy. Granted, neither will prevail alone, but it is William of Ockham's famed Razor, fully sharpened. I would dearly love to know what an old-school TB specialist would say about Crohn's...

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 2/15/2010 8:08 PM (GMT -7)   
I think the last step of koch's postulates was fulfilled by infecting a goat so they could sidestep the ethical concerns . . . i'm not sure if this fulfills the parameters
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/15/2010 9:06 PM (GMT -7)   
I guess it would if we were goats. :)
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 2/15/2010 10:25 PM (GMT -7)   
i had crohns WAY before i ever started reading MAPS! ;-).... if only then invented GPS sooner....
randynoguts 



     http://www.geocities.com/randynogutsweb/


$rules
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/15/2010 11:39 PM (GMT -7)   
Willj: met him at King's College through Tim Page who supports JHT's work & helps many patients with IBD, myself included. He is an extremely genuine person & as you said correctly; he patented his vaccine of course because of the time he has dedicated (including 15 yrs of his retirement). Like you said, he would only spend money on patenting it if he believed in it otherwise the patent is worthless.

One only has to look at the fact that his application for funding has been rejected on numerous occasions to begin to question why (apart from by Action Research). Even if MAP isn't the only cause of Crohn's, surely the fact that he is the most experienced researcher should go some way as well as his development of MAP testing, vaccine trial results, previous drug treatments etc.

Others havn't been able to reproduce his findings properly because map is extremely hard to culture in a lab...ie testing is not easy and he is the one that has developed a new testing method for map to the stage where it is now.

Seriously, he does not care one bit about profit. All the walls he's hit, deaf ears, people trying to ridicule his work so that does not continue with it...look at the bigger picture if map is implicated in being the culprit (or one of) for crohn's. Instead of pretending the problem isn't there for all these years, governments should have taken an active approach from day one, just in case map might be responsible.

He was the head surgeon at St George's and knows the effects of crohn's & how gastly a disease it is. Whether map is the cause or not, more research is needed, but this is slowed by the rejection of research funds. So of course he will patent it; his work has been carried out from privately donated funds for over 15 years...he doesn't want a drug company to then take profits from the vaccine when they did nothing to help his work.

All in all, please at least look into his work

comedybob
Regular Member


Date Joined Jan 2010
Total Posts : 241
   Posted 2/16/2010 1:35 PM (GMT -7)   
as far as ethical goes... i would take the infection if it meant getting closer to a cure for my son.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 2/16/2010 3:53 PM (GMT -7)   
$rules, What is your connection to this person? I am not trying to be rude but you know a great deal about a person to the point that it almost sounds like you are either part of the research team or the person himself. The reason I am inquiring is that many times when a person is trying to get a grant or donations to do a project or research, they go and hit the different message boards to make it seem as if there is a great deal of support for their subject of research. This is a tactic that has been used countless amount of times so that they can show the financial supporters that there is a public want for their project and then show them threads like this. Every single time that this subject has come up on this board the majority of posters and the person starting the thread are new members. If you look at their other posts you will notice that all of their posts deal with the exact same topic and almost always try to post a link to the research website or story about their research. This thread and the last MAP thread that was locked did the same exact thing. If you are a new member that just has a genuine interest in the subject that is perfectly fine and welcome to Healingwell but it would not be the first time that we have seen it here where that was not the case.

Post Edited (tsitodawg) : 2/17/2010 12:16:06 AM (GMT-7)


willj
New Member


Date Joined Dec 2009
Total Posts : 19
   Posted 2/16/2010 5:13 PM (GMT -7)   
$rules, I take it you are in the UK?  I think i need to speak to you in more detail!  I am going to visit JHT in Summer and I TOTALLY believe in his work.  I have been in contact with Tim Page aswell.  Can I PM you ?

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 2/16/2010 6:45 PM (GMT -7)   
dodger84...can you clarify your statement [that]..."Crohn's does not respond to treatment for tuberculosis." with any sort of evidence, such as a journal article of your source, which actually states that.

dodger84
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 2/16/2010 8:39 PM (GMT -7)   
sorry medchrt, in retrospect that statement was misguided on my part.  crohn's does not respond to treatment for m. tuberculosis but it's been clearly shown that m. paratuberculosis does not respond to m. tuberculosis drugs anyway so that was useless information. 
 
my apologies - i read several seemingly unbiased review articles on the topic after the initial comment (which would have prevented me from mentioning that bit of info in the first place).  it doesn't change my opinion though, there does not seem to be enough evidence *at this point* to draw concrete conclusions either way. 
 
i think people should be open to many possibilities right now, since there are so few answers.  speaking for myself, i am content with my current medications until something better comes along.  i do not see this as a debate - if research comes up with something better and more effective, we will know in time.  if a cause for crohn's is firmly established, we will hear about it.  you can tell me that JHT is the nicest, most genuine person in the world and i can believe you, but this is completely irrelevant until there is more hard data.  until then, i remain patient, open and skeptical.

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 2/16/2010 9:37 PM (GMT -7)   
tsitodawg, you have a very valid point here. $rules, please respond. how do you know JHT? just curious . . .
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


$rules
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/17/2010 1:03 AM (GMT -7)   
I get what your saying tsitodawg & jp, i've experienced those scum before on facebook groups I joined to try let ppl know about map. I don't know how to prove that i'm not one of them but I do hate them. For example; aloe vera helped me a lot & I told someone on fb to try it. Another member began slagging off natural stuff & even said that aloe vera turns the colon black!!! She said it was easily found on google, asked her to reference cause i couldn't find anything. Then others started manipulating the situation (whom when I visited their profiles had a majority of friends in the medical community)...hmmm. So I dislike those ppl cause they ridicule anything non-pharma.

On another point, I was diagnosed with severe uc 3 years ago. Flare ups same time of year for 3 years (almost to the date) for 3 months at a time; always end of Feb. This year I went abroad to see what happens. Seem ok at the mo. But severe as in bed ridden for 3 months, lose 12 kg in a week (i'm only slim anyways). Was on asacol & pred but have been off meds for a year now. Not sure whether the uc is crohn's. Took different natural products and seem to have got better from them. Also, changed diet, non-flouride toothpaste, volvic water only, never drink unboiled tap water.

I avoid dairy completely. Even whey protein. I suspected milk to be the culprit even when I was first diagnosed & knew nothing about IBD. I had previously started drinking loads of milk cause a friend said it was good to bulk up ;) thanks for that info... but I drank it on an empty stomach cause I was too busy to eat at work...ie literally replaced water with milk.

I put it to my private consultant about if milk had any part but he denied it. So did an allergy test & came back highly allergic to cow dairy. Then started researching on the net & came across Tim Page's website. So that is how I found about the Prof. My consultant then admitted milk can cause symptoms to worsen (only after I did my research & put it to him!) & said ibd could be environmental.

Last year changed my consultant & the guy was, well he shouldn't be called a doctor. He laughed at my allergy results, said that map was dismissed in the 80s & was generally giving misinformation to me (I didn't directly ask him about the Prof's work). I left feeling more ill & also sick for the ppl who are 'treated' by him. After that found a great consultant.

So I've got to where I am now (not had a flare up for a year now), not taken asacol since first yr I was ill & don't anything apart from natural stuff. If I hadn't done my own research I might even still be consuming dairy & would know nothing about map. Literally if I drink a glass of milk, the next day I would get bleeding, even now. cheese is worse cause it stays in the guts for a long time. know now it's basically my body telling me not to drink it, which is what an allergic reaction is.

So, I feel very sad for ppl whom aren't made aware of even that there might be a link, that consuming dairy might be making their symptoms worse. & I feel sad for the Prof cause he is such a genuine guy; he's like a typical grandad, you can see that in his youtube vids.

TBH, I quit all the fb groups & forum boards cause I got fed up with ppl (employees) that go on there to try & ridicule anything non-pharma. I know the suffering ppl go through but they only care about money. But was looking on google for any new developments & saw this site & Prof JHT's name mentioned.

$rules
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/17/2010 1:09 AM (GMT -7)   
Willj, would be great to talk to you. I did try looking to pm you but can't work out how? I'm abroad at the mo but pls do pm me


Just to reemphasize on my previous point, ppl should be made aware of ALL research that is going on; all possible causes. Which from my experience isn't the case at all

Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 2/17/2010 4:32 PM (GMT -7)   
dont get it... I have not seen any campaining

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 2/17/2010 6:13 PM (GMT -7)   
the fact that map is (becoming) more resistant to the drugs does not make this information entirely useless. taking snohares advice, by taking a moment to reflect, diseases typically are viral, and therefore have antiviral approaches beyond thoseapproaches of antibiotics (in which intent is for the complete eradication of killing the pathogen). When the approach is not to kill it but prevent its advance this is more of a vaccine. So the study should be geared to whether antivirals are effective for crohns. This study could be by actuallyadmistering one drug from the short list of antivirals, or determining whether a particular vaccine is effective in reducing crohns symptoms. (could be as simple as seeing any difference in crohns symptoms from getting a flu shot). Note that when you have the measles it is often said you have the measles, and not that you have the measles disease and this seems to contribute to the problem of not knowing its trigger in the first place. This is further complicated by (in speculation) perhaps that a vaccine has actually triggered the genetic suseptability (and identified this suspectibility) and the result had nothing to do with the fact that it was a measles vaccine that was administered. In other words a study should show if the person had a confirmed allergy prior to having been administered ANY vaccine. as the allergy may be a sign that vaccines can contribute or perhaps bring the situation further towards irreversibilty. In this manner a possible approach might be to administer another vaccine shot. But I doubt, if its the case of having had a reaction the first time you would get any takers. 

$rules
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/17/2010 6:28 PM (GMT -7)   
don't get what you mean about not seeing any campaigning; unless I didn't read something? lol, it's almost wake up time for me but havn't managed to sleep so prob missed what you mean escalador!
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