Crohns/collitis, IBS probably caused by unknown bacterial infection.
Caesar J. B. Squitti
In North America, we have created 'bundled symptoms' that reward
disease. Many, many of todays 'diseases' are probably caused by an
undetected bacterial infection.
One day I asked the 'specialist' why don't you treat people with
antibiotics, and the specialist replied, "I don't know".
After being labelled with IBS, and suffering from it for over 17 years
I was given an old wide spectrum antibiotic for a lung infection that
cleared up my intestinal problems.
An old country doctor said that I probably had an intestinal
infection, most likely 'giardia'. I responded, no, I was tested for
that. To which the doctor responded that one test was not enough that
you may require 4-5 tests to find it.
In the last 17 years, I have noted that many 'diseases' that are
incurable have an intestinal component, disesase such as IBS, Crohns,
MS, arthritis, and some cancers.
So my question to the public is that perhaps many of these so called
'incurable' diseases
Here is a possible treatment.
http://www.abeautifuldifference.com/webdoc.535.html
jin...@gmail.com
wrote:
I wish to add that H. Pylori has a similar story. Dr.s even today
despite overwhelming evidence many Dr.s sometimes believe that stress
is the #1 cause of duodenal and stomach ulcers. Stress is a very
appealing answer as it requires no further medical intervention. "Oh
you have stress; your a little emotional and this problem you have is
not my responsibility" effectively is the translation. Unfortunately
that response leaves the patient untreated or worse yet, the patient
blames him/herslef. So far antibiotics have been the most effective
treatment of Crohn's and IBS. If they aren't caused by bacteria then
why do special antibiotics cause the greatest success rate?
http://jac.oxfordjournals.org/cgi/content/abstract/39/3/393
http://www.ncbi.nlm.nih.gov/pubmed/8607501
One final point - not all antibiotics are effective against Crohn's
disease. Why? Studies suggest that Crohn's disease is actually caused
in the majority of cases by one specific strain of bacteria:
Mycobacterium Avium Subspecies Paratuberculosis, which is highly
resistant to a variety of antibiotics now in common use and requires
treatment FOR MONTHS OR YEARS. This is actually normal for all
mycobacteria as they are distinguished by an extremely thick cell
wall. leprosy, TB, and similar related infections all have a similar
story because they are related Mycobacteria.
Any one with Crohn's disease, that wishes to see if this is true
doesn't need a prescription. They don't need to run drugs from Mexico
either. Some herbs when taken religiously and in the proper way are as
effective if not more effective than standard antibiotics. Do a Google
scholar search for [mycobacterium OR "acid fast bacilli" allicin OR
lauric]. You will be surprised at the number of abstracts and full
text available. Your Dr. is too lazy to care for you generally (just
try to get your Dr. to spend more than 1 minute reading one of these
studies that suggest they are wrong you'll see). Dr.s also have a lot
of pride at stake, and so naturally will be resistant to overwhelming
evidence. Throughout history Dr.s have proven this (Pasteur
encountered this with hand sterilization, and today with H. Pylori).
If you want something done right do it yourself, as the motto goes.
I'm now using small amounts of lauric acid and allicin, from coconut
oil and raw uncut garlic cloves. I'm presently at my heaviest weight
ever 184 lbs. I'm still slim, but healthy. I have the least amount of
acme I have had since childhood, and I'm no longer suffering from
"allergies", which seems more likely to be an immune response to MAP
bacteria. I was this heavy when I was lifting weights in school, but
then fell terribly ill and lost about 23 lbs in 10 days. More
followed. I no longer take ANY prescription medicine. I'm not taking
any enzymes, Pepto Bismol, steroids, etc. I do take multivitamins with
a meal daily, a clove of raw garlic with every meal and snack, and
sometimes I still take coconut oil (more as flavoring now as garlic is
so effective). I always include some fat (at least 5 grams of fat)
with my meal to ensure absorption of allicin (I don't know if it is
water or fat soluble). I used to take in about a cup of coconut oil a
day - effective but ridiculous and nauseating. I used to control my
blood sugar, and even brought it to 25 when my Dr. drew my blood but
that doesn't kill MAP bacteria it only removes symptoms. and it is
very difficult to avoid all drugs and food that have an effect on
blood sugar.
Cooked, old, and crushed garlic that has been exposed to any
significant amount of air, is useless as an antibiotic and if you do a
Google scholar search you will understand why. My intestines took
about 1 week to show dramatic improvements, as I have been trying many
other natural remedies with varying degrees of success I have avoided
much hardship and you may take longer, or you may have a completely
different infection that requires a different herb. Caesar J. B.
Squitti is definitely on the right trail though, and thanks for taking
the time to share this important information. If bacteria do cause
more problems than just H. Pylori, then the immune suppressing
steroids are doing more harm than good. That is why we must understand
the cause before we treat symptoms in the present hap hazard way.
Doc
news:ae5a3f61-5618-4e82...@y38g2000hsy.googlegroups.com:
That's because even though the H. Pylori has been shown to cause SOME
ulcers, it doesn't cause all of them. The broad brush approach is not
good for anyone's health. Claiming that H. Pylori causes ulcers is as
bad as the claim that stress causes ulcers. There are some that are
caused by bacteria, some by stress, some by medications, and some that
are probably still undetermined.
> blames him/herslef. So far antibiotics have been the most effective
> treatment of Crohn's and IBS. If they aren't caused by bacteria then
> why do special antibiotics cause the greatest success rate?
>
> http://jac.oxfordjournals.org/cgi/content/abstract/39/3/393
> http://www.ncbi.nlm.nih.gov/pubmed/8607501
1996 and 1997 are the nest references you have? Crohn's and Colitis
treatments have come a long way since then. The Anti-biotic treatments
haven't.
It appears that the most effective treatment of Crohn's has been the
Remicade/Humira (TNF Blockers) not antibiotics.
> One final point - not all antibiotics are effective against Crohn's
> disease. Why? Studies suggest that Crohn's disease is actually caused
> in the majority of cases by one specific strain of bacteria:
> Mycobacterium Avium Subspecies Paratuberculosis, which is highly
> resistant to a variety of antibiotics now in common use and requires
> treatment FOR MONTHS OR YEARS. This is actually normal for all
> mycobacteria as they are distinguished by an extremely thick cell
> wall. leprosy, TB, and similar related infections all have a similar
> story because they are related Mycobacteria.
Only in some cases, and in small numbers. The tests (which came after
the reports you cited) have not been as promising. In the long run,
while MAP has shown some possibilities in Crohn's and Colitis, it has
not been proved out.
Vanny
Definitely another one for the kill-file bin.
The use of references that are over 10 years old to support one's thesis is
pathetic. If you believe someone that can't even spell colitis and reckons
he's an expert on IBD and many other diseases just because he's been cured
of the squits then more fool you - jinhale.
"Doc" <d...@oeltd.spam.yechh.net> schrieb im Newsbeitrag
news:Xns9A9B84FB...@216.168.3.44...
jin...@gmail.com
> > while MAP has shown some possibilities in Crohn's and Colitis, it has
> > not been proved out.
Really? I don't know about you but 80% remission rate over 2 years
with nothing more than antibiotics sounds pretty appealing to me. If
you read the studies you would know the rates are impressive WHEN THE
STUDIES ARE PROPERLY CONDUCTED. I can't say what back alley botched
studies you are referring to because you gave no sources. Why is the
conclusion: "CONCLUSIONS: metronidazole and ciprofloxacin could be an
alternative to steroids in treating the acute phase of CD."? Why would
antibiotics have an effect on Crohn's disease at all? You have no
explanation of course.
http://www.giacondalimited.com/pages/products/myo_conda.html
Recent information supported by medical professionals that has already
passed phase III medical trials. See the images for yourself. If you
neglected this information you probably haven't even spent a few
minutes looking, because this took me that long to find. Oh and H.
Pylori IS the #1 cause of stomach AND duodenal ulcers; I didn't say
the only cause. Open your eyes and read Doc. Raise the bar start
including some basic specifics.
Part of the reason I neglected to include some more recent medical
trials like the above is because the study wasn't done properly . Even
here they admitted to not using enough medication, "The dosage of
clofazimine used in Pharmacia’s Phase IIIa trial was lower than that
used in previously published studies.".
Pfizer has recently bought out this company, in my personal opinion,
in a way similar to GM's move to destroy all electric vehicles in
California years ago. You and I are more profitable with a managed
illness than a true cure. This economic benefit could easily account
for the lack of more recent high quality studies despite the
recommendations of scientists. Even you have to admit American
television has really whored out the drugs that nobody needs, and the
FDA will approve just about anything with enough financial interests.
Also I don't spend money on journal subscriptions, but you are more
than welcome to and I bet you would find at the very lest some recent
studies.
And Vanny - maybe we should just stop pasteurizing milk because Louis
Pasteur is old hat? Of course not! Maybe we should stop treating TB
with antibiotics because, well, old studies you know. H. Pylori is old
news too. Does that mean Dr.s should let people with ulcers suffer
again? Use your head. In effect what you have said is MAP WAS or could
have been the cause of Crohn's disease, but because that study was old
that can't be true any more. Old studies are valid to the extent they
are valid, nothing more nothing less.
What evidence do you have, that is no more than one year old that
contradicts the findings that anti-map treatment is effective against
Crohn's disease when done properly? Do you have any studies from 2 or
3 years ago to that effect? You have offered nothing but a suppression
of symptoms right? Let me emphasize a properly done study, because I
know you will chime in with something like, 'this study used
penicillin for a week and nothing happened to the people with Crohn's
disease.' You will be more intelligent if you read up on the
difficulties of treating Mycobacterium like TB, Jones disease, and
Leprosy.
>> Only in some cases, and in small numbers. The tests (which came after
>> the reports you cited) have not been as promising. In the long run,
>> while MAP has shown some possibilities in Crohn's and Colitis, it has
>> not been proved out.
What studies? Where? WHEN? Were there studies that used 2 or 3
antibiotics simultaneously which are effective against MAP bacterium
over a long period of time - 1/2 - 3 years. By the way those specifics
would be required required to cure MAP infection in humans according
to researchers.
Anyone that doesn't understand the difference between a causal
relationship and simple correlation probably shouldn't be commenting -
that's you Vanny and Doc. Putting symptoms into remission doesn't show
a cure, like taking aspirin won't cure you of a brain tumor. Lastly a
quote form the link: "Overall results of the Phase IIIa trial
demonstrated a statistically significant improvement in achieving
remission at 16 weeks when using Myoconda® compared with conventional
therapy." Even though they didn't use enough meds to be effective
longer than that they still had STATISTICALLY SIGNIFICANT
improvements . Although past studies, that were more rigorous, were
more effective. I know, I know, a cure is only a cure if it is
recently proven; good luck keeping your intestines.
Doc
news:8fef775b-c2e0-4af4...@27g2000hsf.googlegroups.com:
>>> In the long run,
>> > while MAP has shown some possibilities in Crohn's and Colitis, it
>> > has not been proved out.
>
> Really? I don't know about you but 80% remission rate over 2 years
> with nothing more than antibiotics sounds pretty appealing to me. If
> you read the studies you would know the rates are impressive WHEN THE
> STUDIES ARE PROPERLY CONDUCTED. I can't say what back alley botched
> studies you are referring to because you gave no sources. Why is the
> conclusion: "CONCLUSIONS: metronidazole and ciprofloxacin could be an
> alternative to steroids in treating the acute phase of CD."? Why would
> antibiotics have an effect on Crohn's disease at all? You have no
> explanation of course.
>
> http://www.giacondalimited.com/pages/products/myo_conda.html
>
> Recent information supported by medical professionals that has already
> passed phase III medical trials. See the images for yourself. If you
> neglected this information you probably haven't even spent a few
> minutes looking, because this took me that long to find. Oh and H.
> Pylori IS the #1 cause of stomach AND duodenal ulcers; I didn't say
> the only cause. Open your eyes and read Doc. Raise the bar start
> including some basic specifics.
According to that link, phase 3 was in 2004. Nothing more recent
reported on that website.
> Part of the reason I neglected to include some more recent medical
> trials like the above is because the study wasn't done properly . Even
> here they admitted to not using enough medication, "The dosage of
> clofazimine used in Pharmacia’s Phase IIIa trial was lower than that
> used in previously published studies.".
>
> Pfizer has recently bought out this company, in my personal opinion,
> in a way similar to GM's move to destroy all electric vehicles in
> California years ago. You and I are more profitable with a managed
> illness than a true cure. This economic benefit could easily account
> for the lack of more recent high quality studies despite the
> recommendations of scientists. Even you have to admit American
> television has really whored out the drugs that nobody needs, and the
> FDA will approve just about anything with enough financial interests.
> Also I don't spend money on journal subscriptions, but you are more
> than welcome to and I bet you would find at the very lest some recent
> studies.
The website states:
"When Pharmacia and Pfizer merged, the rights to Myoconda® were returned
to CDD and then the intellectual property was sold to Giaconda"
In other words, Pfizer has nothing to do with this product or
proceedure. Yet, nothing new has been reported on this product,
research, or site.
I looked up CDD as well, and they don't have any MAP trials going
either.
> And Vanny - maybe we should just stop pasteurizing milk because Louis
> Pasteur is old hat? Of course not! Maybe we should stop treating TB
> with antibiotics because, well, old studies you know. H. Pylori is old
> news too. Does that mean Dr.s should let people with ulcers suffer
> again? Use your head. In effect what you have said is MAP WAS or could
> have been the cause of Crohn's disease, but because that study was old
> that can't be true any more. Old studies are valid to the extent they
> are valid, nothing more nothing less.
>
> What evidence do you have, that is no more than one year old that
> contradicts the findings that anti-map treatment is effective against
> Crohn's disease when done properly? Do you have any studies from 2 or
> 3 years ago to that effect? You have offered nothing but a suppression
> of symptoms right? Let me emphasize a properly done study, because I
> know you will chime in with something like, 'this study used
> penicillin for a week and nothing happened to the people with Crohn's
> disease.' You will be more intelligent if you read up on the
> difficulties of treating Mycobacterium like TB, Jones disease, and
> Leprosy.
The last tests I saw indicated that anti-MAP treatments only benefitted
people who were tested positive for MAP. All that says is that people
with MAP induced Crohn's can get benefit from the anti-MAP treatment.
There hasn't been anything new on the MAP scene in several years.
Nothing published, no trials mentioned.
Old studies may be valid, but since they aren't being followed up on,
and no further studies are being done, one gets the impression that the
treatment wasn't as promising as hoped for. If it was, there would be
more studies and treatment options. As it stands, anti-MAP treatments
don't seem to have ever made it to "mainstream" and have dropped off or
been forgotten by most everyone else.
>>> Only in some cases, and in small numbers. The tests (which came
>>> after the reports you cited) have not been as promising. In the
>>> long run, while MAP has shown some possibilities in Crohn's and
>>> Colitis, it has not been proved out.
>
> What studies? Where? WHEN? Were there studies that used 2 or 3
> antibiotics simultaneously which are effective against MAP bacterium
> over a long period of time - 1/2 - 3 years. By the way those specifics
> would be required required to cure MAP infection in humans according
> to researchers.
>
> Anyone that doesn't understand the difference between a causal
> relationship and simple correlation probably shouldn't be commenting -
> that's you Vanny and Doc. Putting symptoms into remission doesn't show
> a cure, like taking aspirin won't cure you of a brain tumor. Lastly a
> quote form the link: "Overall results of the Phase IIIa trial
> demonstrated a statistically significant improvement in achieving
> remission at 16 weeks when using Myoconda® compared with conventional
> therapy." Even though they didn't use enough meds to be effective
> longer than that they still had STATISTICALLY SIGNIFICANT
> improvements . Although past studies, that were more rigorous, were
> more effective. I know, I know, a cure is only a cure if it is
> recently proven; good luck keeping your intestines.
And as anyone with this disease knows, it can also go into remission at
a whim.
The studies published at the CDD website indicated remissions and CDAI
scores continuing to remain at an improved level for up to 3 years after
the initial study. BUT that was with patients who continued treatments.
No mention of those who stopped the treatments.
Other drugs and treatments have been found to get a greater and more
rapid response. I did follow the MAP saga for a while, in hopes it was
going to have a promising future. But it didn't. So my focus went
elsewhere, continuing to look. Remicade appeared to be a good
candidate, it had a better success rate than the MAP. But it seems to
level off in people, reactions are common, and while it does show a
quick response, it seems to fall short. But, there is still research
being done on the TNF "stuff" with different formulations being
developed. So time will tell. It may end up being left behind as the
MAP theory has been.
jin...@gmail.com
proportion of a CD afflicted sample go into remission for years w/o
further conventional treatment? Why even if for 'only' years were
specific antibiotics effective? Why not other antibiotics. This is not
a rhetorical question.
Remicade only lessens symptoms right? Although pain killers, immune
suppressing cortico steroids, and the like may make people temporarily
feel better they don't address the underlying problem and may in fact
make matters worse in the long run because it suppresses healthy
bodily reactions to disease. Don't get me wrong some times I just want
to sleep and my head ache is stopping me so I take a couple ibuprofen,
but I don't continue taking them because of side effects: stomach
ulcers, liver problems, slow healing, etc. Dr.s; however, will insist
that ibuprofen is the next best thing since sliced bread. I propose
that Dr.s are no different that most professionals, lawyers included,
in that they have by in large financial interests at stake. This is, I
think, were the principal differences in two prominent groups on this
subject diverge. I and many others, http://www.mad-cow.org/00/paraTB.html
explain the lack of funding as a lack of financial incentive. As
expensive as antibiotics are, surgery and lifelong disease management
is far more profitable. Almost everyone else would act in their own
financial interests, why wouldn't Dr.s? Historically Dr.s have been
very resistant to change on similar matters.
I wanted to bring up some related points as well. First, those who
believe in evolution should have a hard time believing that millions
of people worldwide have an autoimmune disease that is increasing in
numbers. Unless there is an advantage to having CD, why would it
increase? Genetics is the most fashionable explanation by those in the
medical practice by my count. And there is a tremendous financial
incentive to discover a genetic link, like in Cystic Fibrosis, because
genetic diseases can only be treated with today's technology (longer
treatment = more money for medical professionals). Genetically nothing
has come up after so much continued funding, only small associations
that don't predict with any certainty the likelihood of CD. BUT,
despite this where is more money put year after year? And what do we
hear on the news? I ask you when was the last time if ever there was
an honest discussion of MAP bacteria on the radio? When was the last
time genetics discussed. Neither one is totally conclusive, but anti
MAP treatment such as RMAT was able to put several CD patients into
permanent remission. Also these studies demonstrate the possibility
that the minority that weren't helped may have needed a stronger dose,
may have been reinfected, etc. And the numbers are plausible given the
fact that MAP is related to TB, which also is a difficult bug to
eradicate. Also TB is not curable in many infected individuals, sad to
say. Yet still with all the problems most were helped with RMAT
treatment and similar treatment. The relationship was statistically
significant in properly done studies, also. Also true, similar studies
have been repeated, BUT even with all this promising research where is
the funding NOT put? Stress is also a fashionable idea not at all born
out by evidence. In fact ulcers were once thought to be caused by
spicy foods and stress. The belief was that the ill want to be ill or
make themselves ill through stress. It was wrong then and even today
the evidence simply doesn't support a significant causal relationship,
though of course illness can cause emotional distress. The radio gives
a constant drum beat of chemical imbalance, stress, genetics, etc.,
but w/o a shred of evidence. Why can this pass, but well reasoned
evidence is overlooked?
Your opinion, correct me if I'm wrong, seems to be, 'If there is a
lack of funding in X, then that means or strongly suggests that X is
not a valid theory.' Whereas, I contend that given medicine's history
of poor decision making in favor of pride and financial interests
(referring in particular to H. Pylori, pasteurization, present
opinions on NSAIDS over omega-3 fatty acids healthy lifestyle changes
etc.), demonstrate that medicine will contradict overwhelming
scientific evidence if desired - if pride and financial interests are
present. Not to say that Dr.s don't do some things correct, but
statistics don't favor their preferred methods in many contentious
areas. I would like to read someone comment of the average life
expectancy on balloon angioplasty treatment. Is their life expectancy
more than 4 weeks greater than control yet? Exactly how many years did
Dr.s go on ignoring overwhelming evidence that H. Pylori was in fact
the #1 cause of stomach and duodenal ulcers? Remember the scientist
credited with that important discovery had to infect himself to create
an ulcer to eventually get medical recognition. Even to this day the
role of H. Pylori is underplayed. When I had an EGD my gastrologist
found gastritis but gave me Nexium instead of antibiotics.
In 1875, German scientists found helical shaped bacteria in the lining
of the human stomach. The bacterium was rediscovered in 1979 by
Australian pathologist Robin Warren, who did further research on it
with Australian physician Barry Marshall beginning in 1981; they
isolated the organisms from mucosal specimens from human stomachs and
were the first to successfully culture them. In their original paper,
Warren and Marshall contended that MOST stomach ulcers and gastritis
were caused by infection by this bacterium and not by stress or spicy
food as had been ASSUMED before.
That was 1981, one year before I was born. I expect a gastrologist to
know this better than I do, but alas Nexium has better marketing.
Years after the truth of the matter was known as conclusively as
science gets on this matter, and my Dr. still prescribed the wrong
medication. I would bet money that many more are out there with a
similar story.
Dr.s are biased by financial interests; therefore, they have limited
usefulness. Scientific unbiased evidence is as always more reliable
than appeals to authority. Because MAP infection to date is the most
reasonable explanation (by evidence not popular or medical opinion) as
to the cause of CD I have begun to investigate alternatives to
commercialized medicine. I am now the healthiest and heaviest I have
ever been in my life after treating myself as if I have a MAP
infection. To me this is further evidence of a causal relationship.
Lauric acid given at a ratio of 1 g per kg of body weight in MAP
infected cows will cause remission and cure of Jone's disease
according to the studies I have read. Cure as defined by the total
absence of detectable levels of MAP bacteria (an obligate pathogen by
the way) and symptoms of John'es disease. Some adjustment were needed
for lifestyle choices as cows don't drink coffee, alcohol, tea, and
they don't smoke. I have since avoided caffeine, nicotine, and alcohol
and that treatment, in combination with 1 g of lauric acid per kg of
my body weight, has been the most effective solution according to my
objective measures body weight, skin quality, size of abdominal
distention and # of BM daily etc. (garlic wasn't half bad as well in
large amounts). I have tried lots of combinations of herbal
antibiotics and such (some are more effective than prescriptions so
don't laugh, just go to scholar.google.com to search for carvacrol for
instance) and I need less than 1 week to have zero observable symptoms
after forgoing all stimulants and alcohol in combination with lauric
acid at the appropriate dose. I have tried this for a while so I may
be healthier and other may need the 20 days or so the cows needed in
the aforementioned studies. My results are more predictable with every
improved modification. Of course I will need to further this over time
to be more positive. But I'm not one of those fufu touchy feely
spiritualists. I use real science and to my benefit. And others can
speed up the process.
besides time ,what I suggest is that WE try to treat ourselves instead
of wondering. If we can treat MAP infections with lauric acid, and
lauric acid puts us in remission (also assuming we don't smoke, drink,
etc.) then that further reinforces a MAP causal link and of course
remission ain't a bad thing either. There may be other anti MAP
treatments that are over the counter like lauric acid and just as
effective. Why not try them? You can even take your prescription meds
with lauric acid at the same time. After all lauric acid can be
cheaper than meds and may cure someone. As for lifestyle choices, well
smoking has always had a correlation with CD. Smoking doesn't help the
symptoms unlike UC, so abstinence from stimulants and alcohol are a
good choice for anyone but UC patients anyway. If Johne's disease is
the bovine equivalent of CD then there is every reason to believe that
a similar treatment will work the same or similarly on a similar or
same disease. I think you will admit MAP is not a bad explanation. You
may even admit it is a plausible explanation. Why not set up something
like an experiment? Why not try for a week to a month just to see if
there really is a difference?
There are few studies done on humans with MAP, but MAP is an obligate
pathogen found in higher numbers in CD patients, and the same is true
of johne's disease in cattle, for which there are many more conclusive
studies. Cattle are less politicized and have different economic
motives because they are worth more as hamburger meat than alive
(healthy or otherwise) thus scientists can be more honest about
Johne's disease than CD. You may find some studies on Johne's disease
and effective antibiotic treatments besides lauric acid. I would be
very interested to hear of them if you do find alternatives especially
cheaper alternatives to lauric acid. Lauric acid is cheap in
comparison to prescription meds bought in America, though. There was a
good study called Lauric acid for the prevention and treatment of
mycobacterial diseases by John M. Carroll. He mistakenly wrote CD
isn't caused by MAP despite the fact that he provided no evidence for
that and despite the fact that MAP is an obligate pathogen found in CD
patients in high percents (80% when resected sections of intestines
are cultured with care compared to 20% in control). Like I said
earlier this is a politicized topic with strong financial interests at
stake. Dr.s were just as confident that H. Pylori couldn't cause
ulcers before they were proven wrong more conclusively. Despite that
bothersome comment I was able to use the study with great effect now.
I see you, Doc, have taken the time to do a fair amount of reading.
Thank you for that. You also give more specifics than the average
person. I apologize for any harsh comments toward you; Vanny was
particularly offensive and ignorant so I may have reacted to that, but
I'm over that now. I hope you realize now that I seriously study this
important subject also, and provide evidence, besides just spouting
off my opinions.
Also I think I spelled Johne's wrong earlier it is spelled Johne's
disease not Jone's disease.
Doc
> So my question is this: what can cause a statistically significant
> proportion of a CD afflicted sample go into remission for years w/o
> further conventional treatment? Why even if for 'only' years were
> specific antibiotics effective? Why not other antibiotics. This is not
> a rhetorical question.
If we knew why people go into remission on thier own, I bet we would be closer to a cure.
The antibiotic regime has had some success with different antibiotics. Still to varied to know for sure.
> Remicade only lessens symptoms right?
Actually, no.
It also heals and has been known to repair. It supresses the actions that cause the inflamation and damage.
> to sleep and my head ache is stopping me so I take a couple ibuprofen,
> but I don't continue taking them because of side effects: stomach
> ulcers, liver problems, slow healing, etc. Dr.s; however, will insist
> that ibuprofen is the next best thing since sliced bread.
And it is. But even doctors will tell you that you can't take ibuprofen day after day. It will cause damage. It
is great for fast releif, and is good for a moderate course, or as needed.
> I wanted to bring up some related points as well. First, those who
> believe in evolution should have a hard time believing that millions
> of people worldwide have an autoimmune disease that is increasing in
> numbers. Unless there is an advantage to having CD, why would it
> increase?
Breeding. People travel more and more, spreading thier genetics all over. If the disease is genetic, or has a
genetic component, then it is possible that it is being spread.
The other possibility of the increase is better diagnostic tools. Just look at the small sampling here, most were
initially diagnosed with something else, and just never got "better" until they were finally diagnosed correctly.
How many more people are getting diagnosed properly the first time now?
> (longer treatment = more money for medical professionals)
Really?
Under most health plans, longer treatment = less income. It becomes more tiresome and costly for the doctors to
continue treating since many programs put time limits on treatments, or don't cover them at all.
. Genetically nothing
> has come up after so much continued funding, only small associations
> that don't predict with any certainty the likelihood of CD.
The genetic indicators have about the same following as the MAP.
Regardless, MAP still needs a causitive agent, a weakness it can exploit. Genetics backs that up as well.
> hear on the news? I ask you when was the last time if ever there was
> an honest discussion of MAP bacteria on the radio? When was the last
> time genetics discussed. Neither one is totally conclusive, but anti
> MAP treatment such as RMAT was able to put several CD patients into
> permanent remission.
The question really is, when was the last time an honest discussion of Crohn's or Colitis was on the radio? More
lately, but not as much as could be. It certainly isn't one of the "popular" diseases.
> Also true, similar studies
> have been repeated, BUT even with all this promising research where is
> the funding NOT put?
There was, several years back, a lot of study being done on MAP. It didn't prove out, and so funding and studies
have dropped off. Except for a few people who are continuing to research it, others have gone on looking for
another possible treatment.
> The radio gives
> a constant drum beat of chemical imbalance, stress, genetics, etc.,
> but w/o a shred of evidence. Why can this pass, but well reasoned
> evidence is overlooked?
Radio, like Television, is a fast media. All headlines and little real content. You want the evidence, look to
the books, magazines and research institutions.
> Your opinion, correct me if I'm wrong, seems to be, 'If there is a
> lack of funding in X, then that means or strongly suggests that X is
> not a valid theory.'
No, my take on it is that when the very people who were pioneering the research stop researching it, and stop
trying to get funding, then it must not be proving out.
> Whereas, I contend that given medicine's history
> of poor decision making in favor of pride and financial interests
> (referring in particular to H. Pylori, pasteurization, present
> opinions on NSAIDS over omega-3 fatty acids healthy lifestyle changes
> etc.), demonstrate that medicine will contradict overwhelming
> scientific evidence if desired - if pride and financial interests are
> present. Not to say that Dr.s don't do some things correct, but
> statistics don't favor their preferred methods in many contentious
> areas. I would like to read someone comment of the average life
> expectancy on balloon angioplasty treatment. Is their life expectancy
> more than 4 weeks greater than control yet? Exactly how many years did
> Dr.s go on ignoring overwhelming evidence that H. Pylori was in fact
> the #1 cause of stomach and duodenal ulcers? Remember the scientist
> credited with that important discovery had to infect himself to create
> an ulcer to eventually get medical recognition. Even to this day the
> role of H. Pylori is underplayed. When I had an EGD my gastrologist
> found gastritis but gave me Nexium instead of antibiotics.
You discuss two different things in this paragraph.
Doctors who are set in thier ways and don't want to accept current research vs the people who do the research.
If MAP proved out, you don't think the community wouldn't get behind it? There would be companies lining up to
manufacture the medicines to treat it and would make a fortune. Since the cause is considered present in everyday
life, reinfection would be a norm, thus a continuing supply of patients, need for treatment, and income.
The researchers and manufacturing companies would be making a killing.
> In 1875, German scientists found helical shaped bacteria in the lining
> of the human stomach. The bacterium was rediscovered in 1979 by
> Australian pathologist Robin Warren, who did further research on it
> with Australian physician Barry Marshall beginning in 1981; they
> isolated the organisms from mucosal specimens from human stomachs and
> were the first to successfully culture them. In their original paper,
> Warren and Marshall contended that MOST stomach ulcers and gastritis
> were caused by infection by this bacterium and not by stress or spicy
> food as had been ASSUMED before.
>
> That was 1981, one year before I was born. I expect a gastrologist to
> know this better than I do, but alas Nexium has better marketing.
> Years after the truth of the matter was known as conclusively as
> science gets on this matter, and my Dr. still prescribed the wrong
> medication. I would bet money that many more are out there with a
> similar story.
No, your doctor prescribed what he knew. Are you saying that somehow all doctors should know instantly what will
and won't work, and that they should embrace every new discovery? Instead of doing what they have done before and
had good luck with?
> Dr.s are biased by financial interests; therefore, they have limited
> usefulness.
I can see where your bias is.
So, you aren;t cured then.
A CURE would mean you could go back to what you were doing before, living as you were before, because you would no
longer have the disease. If you are continuing to take the supplements, modified diet, etc, then you are not
cured, but are on a lifelong "medicinal" regime.
You are certainly free to use herbologists (and make them money) than pharmacists...
> mycobacterial diseases by John M. Carroll. He mistakenly wrote CD
> isn't caused by MAP despite the fact that he provided no evidence for
> that and despite the fact that MAP is an obligate pathogen found in CD
> patients in high percents (80% when resected sections of intestines
> are cultured with care compared to 20% in control). Like I said
> earlier this is a politicized topic with strong financial interests at
> stake. Dr.s were just as confident that H. Pylori couldn't cause
> ulcers before they were proven wrong more conclusively. Despite that
> bothersome comment I was able to use the study with great effect now.
MAP appears in a large percentage of the population. Yet not all are affected with
Crohn's disease. This is enough to suggest it is not a causitive agent, but an opportunist
agent. There are many different studies, showing different agents that seem to be
associated with CD and UC, but none that can be conclusively show to be the one agent.
My position is that there are several different kinds of Crohn's. Some are MAP induced,
some are truely autoimmune disorders, and there may be others as well. What I have seen
the research heading toward is finding a common element behind all the possible agents,
in an attempt to find the weakness that allows any of the opportunist agents to "cause"
the disease.
> I see you, Doc, have taken the time to do a fair amount of reading.
> Thank you for that. You also give more specifics than the average
> person. I apologize for any harsh comments toward you; Vanny was
> particularly offensive and ignorant so I may have reacted to that, but
> I'm over that now. I hope you realize now that I seriously study this
> important subject also, and provide evidence, besides just spouting
> off my opinions.
Vanny is very well versed, and certainly not ignorant.
I can see you study it, but it also appears you have a bias toward the medical
industry. Bias toward anything suggests you aren't looking at all the evidence
or research, just that which supports your theory.
I can't say I'm not biased, we all are, but I would welcome ANY research that
shows some promise. I have in the past (and will probably do less in the future,
due to circumstances) tried to research every little theory that has come up, even
some of the more outlandish, in the hopes that there was some element of hope for
a cure, or better treatment.
> Also I think I spelled Johne's wrong earlier it is spelled Johne's
> disease not Jone's disease.
Yes, you did. :)
But then I have seen Crohn's misspelled a lot. And I know I ain't perfect at my
spelling all the time either.
zumon...@yahoo.com
> First, those who
> believe in evolution should have a hard time believing that millions
> of people worldwide have an autoimmune disease that is increasing in
> numbers. Unless there is an advantage to having CD, why would it
> increase?
1) If something like CD decreases successful procreation it would
decrease in time. Note the “in time” part, that could take
generations. And some cases of CD strike in the mid to late 40s, a
time when many people have already had children.
2) Not everyone considers it an autoimmune disease. From my reading
the current mainstream opinion is that it is an immune dysfunction
disease.
3) At its simplest, evolution is survival of the fittest, that is,
those who are fittest for their environment have more offspring. If
the environment changes, the the genes most fit for the population
can change. It is possible that IBD is caused by an aggressive immune
repose to some trigger. If this is true, then for much of humanity's
history, it may have conferred a benefit on those carrying the
genes. The “hygiene hypothesis” suggests several immune diseases may
be a result of modern hygiene (not enough parasites to keep our immune
systems busy).
4) CD could be increasing due to more people moving into modern
living conditions, if something in those conditions triggers it. A
better understanding of the disease and better methods for detecting
it could lead to what looks like an increase but is just better
diagnostic techniques. Better medical care might explain the increase
too; people that would have died young without children get care and
go on to have children of their own.
--
Luke
Mel
Luke,
Number 5 could be that it is an example of survival of the fittest
bacteria (or other type of micro-organism). Bacteria don't always
thrive because they are good for the host, as is evident by their
rapid evolution to withstand anti-biotics.
Mel
jin...@gmail.com
>> Note the “in time” part, that could take
>> generations. And some cases of CD strike in the mid to late 40s, a
>> time when many people have already had children.
How long has Crohn's disease been around? Also there are ways to
scientifically account for the inability to properly diagnose patients
in the past. Cystic Fibrosis is very common supposedly for reasons -
resistance to TB and other diseases; how does CF compare in numbers to
CD? If CD is a recent invention or old hat at your discretion what
could offer an explanation of why CD patients are ill so soon in life
typically and yet reproduce more than healthy people? After all the
numbers are clearly on the up and up any way you look at it and
quickly rising compared to true common genetic diseases like Cystic
Fibrosis. There is an alternative theory that does have good reasons
and is backed by science; is a genetic link even more compelling?
A quote from wikipedia: "Smoking has been shown to increase the risk
of the return of active disease, or "flares". The introduction of
hormonal contraception in the United States in the 1960s is linked
with a dramatic increase in the incidence rate of Crohn's disease.
Although a causal linkage has not been effectively shown, there remain
fears that these drugs work on the digestive system in similar ways to
smoking." What this says to me is that at best CD patients have a
genetic vulnerability, as Doc suggests. Smoking is not genetic,
despite what people say. I have observed that this is true for me as
well. I have less problems now that I have quite smoking, drinking
alcohol, and other non-genetic lifestyle changes. Let me explain; if
you have Cystic Fibrosis, some things are predictable. The age of
onset is fairly predictable, The effects of medications are fairly
predictable, etc. With CD we find smoking is harmful but non-smokers
still get ill. Most CD patients are of a certain age but could be
anywhere from an enormous range of years old. While diseases like CF
and Sickle Cell anemia are common as genetic diseases go because they
have a counterbalancing benefit and they are typically very
predictable. Also the number of patients with genetic diseases isn't
on the rise like CD. To date no gene has been discovered that can
explain CD. The human genome has been mapped for years. Although CD
tends to kinda run in families it isn't predictable like say Dwarfism,
or sickle cell anemia. Two CD patients can give birth to a healthy
baby and the opposite is true. How can that be genetic?
Some of the comments are either factually false or quite close:
>> Better medical care might explain the increase
>> too; people that would have died young without children get care and
>> go on to have children of their own.
Again from wikipedia: "The usual onset [of CD] is between 15 and 30
years of age but can occur at any age." Another source I forget the
name put the median age at 26, I think, but correct me if I'm wrong.
America would need to have very bad medical care indeed for it to
effect the age of onset to the extent needed to have a birthing
impact. This disease typically strikes in the prime of life when
babies are made. The fact that CD usually occurs at a young age but
can occur at any age doesn't suggest the typically predictable nature
of genetics either.
Although there are many strange theories out in the world, I will need
evidence to stop believing the overwhelming evidence that CD is
bacterial in origin, and start believing studies that have been tried
but have had less success. One of the studies I first referenced
points out that greater than 90% of severely affected CD patients were
put into remission longer than their 2 year treatment w/ antibiotics,
w/o the use of steroids, surgery, etc. This percent is arrived at by
not counting that couple patients that dropped out early otherwise the
number is around 80%. They needn't be included, in my opinion, because
they didn't undergo treatment, but 80% is still significant.
From this site: http://alan.kennedy.name/crohns/welcome.htm#medical I
found that Kosh's postulate has been fulfilled at least in part, and
possible to a greater extent than leprosy, for MAP and CD! This small
study in particular is very interesting: http://alan.kennedy.name/crohns/research/animal/chicken.htm
The study is from 1991, but CD is still the same disease, people
haven't changed much, and chickens haven't changed much either. The
studies are out there and researchers would like to conduct more
research if you believe what they write, and I do. Regrettably more
funding is put in disease management.
>> Under most health plans, longer treatment = less income. It becomes more tiresome and costly for the doctors to
>> continue treating since many programs put time limits on treatments, or don't cover them at all.
I strongly disagree. Dr.s are only a part of the equation, but the
truth still holds - supply and demand is a law not a theory. If
patients want to avoid reinfection that is probably very simple as MAP
is an obligate pathogen it is typically found in milk that was under-
pasteurized, such as in America. Further explanation are found in
previous links (look for got milk). Prescription drug manufactures
which are now a multi billion dollar industry do in fact clearly
benefit from selling a lifetime of medication as opposed to less than
2 years worth of antibiotics. Sad to say, surgeons also benefit from
our illness more than health. Some Dr.s are undoubtedly altruistic
and very bright. I read about Dr.s that to this day still treat CD
patients with antibiotics - heroes in my book especially considering
the opposition. But if everyone were healthy where would that leave
Dr.s and pharmaceutical companies? The problem for Dr.s is that if MAP
is the cause - evidence points to yes more that competing theories as
verified by more stages of Kosh's postulate being fulfilled etc. -
then not only can patients stop paying for drugs, but they can avoid
further problems, and future customers/patients can also avoid this
misfortune. Milk, and only under-pasteurized milk is the principal
problem for humans, as other foods are typically cleaner or cooked
more.
>> If MAP proved out, you don't think the community wouldn't get behind it?
History says no, and I agree with history because it is predictable in
this regard. Medical practitioners will ignore mounting evidence as
long as possible if the incentives are right. This is of course a rule
not everyone is a good little pharma scout. I'm curious what you mean
by "community" as this isn't a united front. If by community you mean
patients, then I wish to point out that you are very reluctant to
believe evidence that isn't supported by a majority opinion, either
majority of authority figures or in general. Your statement 'If ....
don't you think ...?' is strikingly similar to the fallacious thinking
'if something is a good idea then the good idea must be supported
popularly.' There are plenty of instances of times when the majority
of the population believes total rubbish. Authority often endorses
rubbish ideas as well. Instances would be ulcers and stress, Zeus,
blood letting, etc. We can't wait for a heroic Dr. to figure it out to
know what is in our best interest.
>> No, my take on it is that when the very people who were pioneering the research stop researching it, and stop
>> trying to get funding, then it must not be proving out.
There are many more quotes like this in the papers I quote; this one
is from http://alan.kennedy.name/crohns/research/chemo/htfull.htm :
"In conclusion, these data suggest that treatment with rifabutin in
conjunction with a macrolide antibiotic is a safe combination that may
induce and maintain remission as well as abolish steroid dependency in
refractory Crohn's disease. As a proportion of patients with extensive
Crohn's disease resistant to standard medical therapy respond to RMAT,
further evaluation of this treatment as an additional therapeutic
option is of great importance. These results justify a randomized,
controlled trial to assess the efficacy of this therapeutic approach
taking into account the standards for approval of new drugs for
inflammatory bowel diseases."
These patients were not mild, they were severe cases. Despite the
failings of the past the good scientist Gui, still recommends "a
randomized, controlled trial". The researchers do in fact want to
continue with their research as it is so successful, not the other way
around. I can find more quotes if that is helpful. The researchers are
very bright and explain why research in the more distant past was
unsuccessful where here and with many other underfunded studies there
was so much success. Remember the researchers don't get funding
directly from us, they TYPICALLY do applied research for a
pharmaceutical company or other group with more money than God.
Thankfully the pharmaceutical companies occasionally let something
good slip through the cracks.
>> No, your doctor prescribed what he knew. Are you saying that somehow all doctors should know instantly what will
>> and won't work, and that they should embrace every new discovery? Instead of doing what they have done before and
>> had good luck with?
The good Dr. should have knows because his job as a gastroenterologist
is to know guts, and the misinformation he has been using was obvious
wrong well before he treated me (he had about 2 decades to get things
straight on a topic of crucial importance to his field of work). The
Dr. believed what he wanted to believe not what was logical. And yes,
Dr.s should embrace every new discovery that is tested for years and
proves itself to be the most likely correct solution. When to start a
new treatment is a gray area, but horrible theories that have no basis
for reality should never be adopted. The point is that he never really
had "good luck" with the traditional treatments. Before H. Pylori was
discovered this was untreatable w/o surgery and antacids. But surgery
didn't help either. Dr.s just recommended it despite the lack of
efficacy. They recommended eating less spicy food and fat, despite a
total lack of evidence that this would help. Recent common practice in
medicine is different than science to this day. They do some things
well, but not much. The death rate for a city will still go down in
some cities when there is a Dr.'s strike.
The suggestion was to eat less spicy foods and chill out. Dr.s were
confident despite the lack of evidence. I think that a real low bar to
set for Dr.s would be to at least not embrace theories that sound
appealing but have no foundation in empirical research and logic. They
even recommended eating milk which actually makes things worse after
our stomachs compensate for the alkaline milk! I have a friend that
heard this just a few short years ago! Even decades after Dr.s I talk
to still insist that stress "must have some role" in its etiology. I
expect as a bare minimum that a Dr. will try his/her best to do no
harm. He failed and every Dr. I have met save 1 or 2 have failed
miserably is this regard. Coconut oil is wonderful not only for its
benefits but also for its safety record. I had internal upper
intestinal bleeding shortly after taking his medicine, evidenced by
dark tarry you know what with no other explanation. That was the first
time I can remember symptoms of upper GI bleeding. My lack of stomach
acid at the time probably gave rise to opportunistic pathogenic
bacteria.
A Dr. had to infect himself, document health before, gastritis after
infection, and health after antibiotic treatment to get decent
attention for this causal relationship. Before that Dr. the evidence
was mounting similar to MAP and CD, but he made it in our face so only
really stubborn Dr.s totally deny the powerful connection to this day.
Similar to CD and MAP people pointed out that more people have H.
Pylori than have ulcers and gastritis. And this is where I expect you,
Doc, would chime in and say, 'genetics and environment have a role to
play, but H. Pylori is the principal causative agent and is necessary
to develop full blown ulcers.' I get the impression you would point
out the complexity of the situation, and I would point out that one
bacteria is absolutely necessary in the majority of cases to cause
disease where genetics can't be proven to a reasonable threshold to
have an effect. In short there is some noise to the equation
(genetics, environment, stress?) but still a great deal of
predictability. The only way to cure an ulcer reliably is with
antibiotics, which partly demonstrates a causal relationship. By the
way the second leading cause of ulcers is NSAIDS. How many Dr.s warned
us that aspirin can cause ulcers? The answer is a shameful amount.
Today almost the same exact story is being acted out with CD and MAP.
Dr.s refuse to believe evidence. Big pharma takes Dr. Doe and his
entire staff out for free lunch to discuss amphetamine deficiency in
children. Dr.s are prescribing medicine that in the short term
diminish symptoms but don't cure and, if MAP is the cause are doing a
great deal of harm.
For the sake of argument, assume I'm biased to hate big pharma. I have
had very negative experiences that may not be characteristic of the CD
population at large and their relationship with Pfizer or whatever.
But I have had some positive experiences. The point still remains that
there is a significant financial inventive for a capitalist based
health system to maintain a certain level of symptoms. Countries like
Sweden and a few other more socialized modern countries have taken a
more aggressive approach. Sweden for instance, I have read, has signed
an initiative to eliminate MAP in cattle because of the threat that it
causes CD. Also this is part of a bigger pattern of medical denial of
true science in favor of financial incentives.
Do the math. How much does each bottle cost that a typical CD patient
takes in during the course of a month? How long do we typically live
after diagnosis; over 2 years? Most patients already ARE lined up for
the newest ineffective long term disease maintenance program
available. How much does surgery cost? Follow they money and many
answers will be revealed. Why cut the supply of income short?
Reinfection is easy to avoid if you know the cause. If if we were
reinfected once every other year mycobacteria grow slow. Also dairy
would take a beating in the market. Most dairy tested in U.S.A. does
have live MAP according to all but about one study done by the FDA I
think. They froze the milk dehydrated it and then pasteurized it as
normal.
>> There was, several years back, a lot of study being done on MAP. It didn't prove out, and so funding and studies
>> have dropped off.
Doc, on the topic of past research, one standard works both ways. If
my studies are too old then ones before them are far too old. But all
of this is relative so far. Now the situation is that the recent
research - post macrolide treatments - are better overall than the
past research before which used: 1. the wrong type of antibiotics 2.
the wrong combination of antibiotics 3. antibiotics for a far too
short duration etc. These and other facts easily explain the remaining
5 - 20% of the patients in these well done studies that don't show
long term progress for a long period of time (more than 2 years in
some studies), and these explanations according to researchers on this
topic say explain why CD wasn't aided by antibiotics earlier. Old
studies (by my standards pre-macrolide antibiotics) used antibiotics
that were effective against TB but not MAP. You can't drown a fish
even with lots of water, and MAP can't be killed with certain
antibiotics even large amounts. Saying that many studies were
fruitless while factually true is misleading by omission of facts. And
any Dr. or person for that matter who holds this information from you
is probably either deceptive or ignorant. The earliest studies should
be disguarded when a better explanation replaces no explanation
(superstition magic etc.), or a poor explanation, but not because they
are old. Old is relative, besides.
We have to remember that people are infected with an obligate
pathogen. As you, Doc, correctly point out that fact per se is
insufficient to cry foul. The criminal leaves more evidence; however.
To take MAP from the intestines of a CD patient and infect a chicken
will reliably cause symptoms equivalent to CD in humans. Furthermore,
to give antibiotics to the chicken or any other warm blooded animal
that can be infected the proper duration, strength, kind, etc, of
antibiotics will reliably produce remission, and some say cure. That
is damning evidence, but there is plenty more. John's disease is very
similar to CD. MAP is transmitted live through pasteurized milk in
America especially as our temperature is particularly low for that
treatment. Crohn's patients seems to be cured with an antibiotic
regime effective against MAP, but only experience lighter symptoms or
no difference when using antibiotics that aren't effective against
MAP. As you point out perhaps some patients are misdiagnosed or Dr.s
may use umbrella terms, after all they have no clue what is going on
in our bodies, by the admission of the Dr.s themselves. Therefore some
people diagnoses with CD may in fact have UC or something different
and thus would need a different treatment.
>> A CURE would mean you could go back to what you were doing before, living as you were before, because you would no
>> longer have the disease. If you are continuing to take the supplements, modified diet, etc, then you are not
>> cured, but are on a lifelong "medicinal" regime.
I'm gaining more weight day after day, slowly but surely, still I know
I will need to refine my regime to be "cured". What can I say, these
people needed months to be in remission. I'm definitely on to
something, but I'll wait a little longer before I get more confident.
What's amazing to me is that you can read over 90% of the patients are
completely off of antibiotics, and all other prescription medication
and have no signs of active disease, and write that the success
stories are shaky science or unimpressive. The results were replicated
several time, many studies showed a statistically significant
relationship, and the logic is all quite convincing. I've tried every
dim witted idea in the book as well, and your right to say that
nothing is conclusive, but no theory will ever be absolutely
conclusive with anything. MAP is a theory that explains CD better
according to science and logic, but not special interests. And yes big
pharma is not my friend; I don't think they are your friend either.
What I'm doing now is to try to put together an over the counter
regime that is equal in effectiveness to the prescribed ones that have
proven their effectiveness already. This is difficult to say the
least, but I have been experimenting and researching for years. I
already have figured out enough to gain all my weight back plus some
and most of my health w/o any prescription meds and with horrible
advice from friends and family, well meaning of course. I already have
a dietary and lifestyle regime that for me works 100% of the time but
is too difficult to realistically follow for months at a time. No I'm
not cured yet, but I feel pretty dam close and objectively measurable
symptoms verify my opinion, and I'm not gonna stop experimenting on
myself until I'm cured. I hope to hear from people that are fellow
scholars whom experiment with different herbs. Eating more than a cup
of coconut oil a day is difficult but it puts me in remission if I
don't take in drugs as well - nicotine, caffeine, alcohol, etc.
Perhaps I would be cured like the cows in one of the studies I
referenced if/when I'm more disciplined, but for now I'll just try new
herbal combinations w/ coconut oil until I can smoke, drink, etc. or
at least eat less coconut oil. By the way, what I'm doing now is much
much cheaper than taking prescription pills from America (China is
much much cheaper for any route but I can't afford to go to China or
other places yet). Also I just found some interesting studies on the
in vivo effectiveness of herbal extracts on TB which is related to
MAP. All the ingredients are less than a cup a day so that means I may
possibly find a synergistic combination that allows me to eat less
coconut oil - something that is much easier to comply with.
Now, if you have something that makes prescription med and symptom
free for over 2 years by the majority of severely afflicted CD
patients seem unimpressive, I would really like to read about it. Even
if you were a board certified gastroenterologist I would want to know.
We may well just have to have a gentleman's disagreement as to what is
truly biased. I believe that financial incentives create bias among
other things, and I have a suspicion most people, perhaps you even,
suspect those financial interests bias certain authority figures at
least slightly. After all who would argue that a lawyer is moral by
what a lawyer does? A lawyer is neither moral nor unmoral to defend a
criminal, simply amorally defending a client. A Dr. has to feed a
family, and will probably believe the constant drumbeat put forth on
the tube just like most other people that watch it. I don't hate them
personally but I don't trust them either (with good reason), as they
are part of a broken system. My distrust of those with strong
misaligned incentives and the distrust many others harbor, is really
just a statement based on fact. Dr.s really are biased because their
incentives are thus. Dr.s with different incentives will prescribe
differently. All I'm saying is that you wouldn't call distrust of an
opposing lawyer to you're defense bias any more than I would call your
apparent trust in Dr.s bias. We all know that because a lawyer is paid
more to get a certain outcome regardless of justice, we shouldn't
trust the opposition to be just. We can rely on a fair amount of bias
though. Sometimes even people that appear to be on our side are in
fact still out to make a quick buck. As a slightly off topic example:
Freakanomics a book has a chapter on real estate agents and the KKK.
Real estate agents will typically sell their own house for much more
than your house because they can get paid quicker then repeat another
quick sale. I call that incentives; I call that bias. Why call me
biased; do you think I own stock in garlic, coconut oil, or
something?
Daily riddle
Q: What do Remicade, asthma, and CD all have in common?
A: Money
OK on a serious note Mc|)onalds came up with a new jingle: ba da ba ba
ba .... diabetes!
@rbies: "I'm thinkin' cancer!"
jin...@gmail.com
>
> > First, those who
> > believe in evolution should have a hard time believing that millions
> > of people worldwide have an autoimmune disease that is increasing in
> > numbers. Unless there is an advantage to having CD, why would it
> > increase?
>
> 1) If something like CD decreases successful procreation it would
> decrease in time. Note the “in time” part, that could take
> generations. And some cases of CD strike in the mid to late 40s, a
> time when many people have already had children.
>
> 2) Not everyone considers it an autoimmune disease. From my reading
> the current mainstream opinion is that it is an immune dysfunction
> disease.
I know. I'm one of the "not everyone". I don't know how a body can be
injured by not being attacked by itself or any foreign matter, but you
seem to be right somehow about this opinion.
"The most popular theory is that the body’s immune system reacts
abnormally in people with Crohn’s disease, mistaking bacteria, foods,
and other substances for being foreign." && "Research has indicated
that Crohn's disease has a strong genetic link."
http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/#cause To be fair
I would have to agree that we can rather conclusively say that there
is some general type of immune reaction weather autoimmune or purely
defensive, but the general opinion is too suggestive for such little
evidence as correlations. And please someone explain to me how my
macrophages could attack food and then I would get some sort of injury
like scaring while not attacking my own body's cells?
>
> It is possible that IBD is caused by an aggressive immune
> repose to some trigger. If this is true, then for much of humanity's
> history, it may have conferred a benefit on those carrying the
> genes. The “hygiene hypothesis” suggests several immune diseases may
> be a result of modern hygiene (not enough parasites to keep our immune
> systems busy).
My uncle fell victim to auto-immune arthritis. The cause was food
poising. Perhaps some people are infected and never develope symptoms.
I know what you mean, but still at best this is a minor role compared
to the bacteria. The genetic component would still be likely somewhat
constant. It would certainly spread less quickly than bacteria. And it
could be the case where genetics are positive but still there is no
disease; therefore, genetics are not causal. Semantics at one level
true - but this distinction is still important for treatment.
jin...@gmail.com
So I take it you support the MAP theory?
Doc
news:e18d7c32-98a9-4470...@m45g2000hsb.googlegroups.com:
> http://alan.kennedy.name/crohns/chemo.htm
Not sure why that link is included. I know Alan Kennedy has done a lot of research into
MAP, but as you can see from that link there hasn't been much done in years. His site
is a pretty good look into this aspect of the disease and treatment.
>>> Note the “in time” part, that could take
>>> generations. And some cases of CD strike in the mid to late 40s, a
>>> time when many people have already had children.
>
> How long has Crohn's disease been around? Also there are ways to
> scientifically account for the inability to properly diagnose patients
> in the past. Cystic Fibrosis is very common supposedly for reasons -
> resistance to TB and other diseases; how does CF compare in numbers to
> CD? If CD is a recent invention or old hat at your discretion what
> could offer an explanation of why CD patients are ill so soon in life
> typically and yet reproduce more than healthy people? After all the
> numbers are clearly on the up and up any way you look at it and
> quickly rising compared to true common genetic diseases like Cystic
> Fibrosis. There is an alternative theory that does have good reasons
> and is backed by science; is a genetic link even more compelling?
Where do you find that the numbers of Crohn's patients is rising? The studies I was
finding indicate a stagnation. Some areas do show an increase, others a decrease. I
wasn't able to find any definitive numbers though. Wikipedia indicates 6-7.1 per
100,000 in population for Crohn's. While carriers of CF is 1 in 22 to 25 and 1 in 3900
infants are born with CF, according to Wikipedia.
<note: I am not saying Wikipedia is the definitive source, but since you use it and it
does tend to have much of the information in one place, it is a decent starting point>
> A quote from wikipedia: "Smoking has been shown to increase the risk
> of the return of active disease, or "flares". The introduction of
> hormonal contraception in the United States in the 1960s is linked
> with a dramatic increase in the incidence rate of Crohn's disease.
> Although a causal linkage has not been effectively shown, there remain
> fears that these drugs work on the digestive system in similar ways to
> smoking." What this says to me is that at best CD patients have a
> genetic vulnerability, as Doc suggests. Smoking is not genetic,
> despite what people say. I have observed that this is true for me as
> well. I have less problems now that I have quite smoking, drinking
> alcohol, and other non-genetic lifestyle changes. Let me explain; if
> you have Cystic Fibrosis, some things are predictable. The age of
> onset is fairly predictable, The effects of medications are fairly
> predictable, etc. With CD we find smoking is harmful but non-smokers
> still get ill. Most CD patients are of a certain age but could be
> anywhere from an enormous range of years old. While diseases like CF
> and Sickle Cell anemia are common as genetic diseases go because they
> have a counterbalancing benefit and they are typically very
> predictable. Also the number of patients with genetic diseases isn't
> on the rise like CD. To date no gene has been discovered that can
> explain CD. The human genome has been mapped for years. Although CD
> tends to kinda run in families it isn't predictable like say Dwarfism,
> or sickle cell anemia. Two CD patients can give birth to a healthy
> baby and the opposite is true. How can that be genetic?
Well, the same Wikipedia article you got the other information from also addresses the
genetic component.
"Mutations in the CARD15 gene (also known as the NOD2 gene) are associated with Crohn's
disease"
Two people with blue eyes can give birth to a child with hazel eyes. Genetics isn't a
direct 1+1=3 equation. There are many (I have heard infinite) combinations possible
within each person. It is quite possible for 2 people with the disease to be lucky
enough to have a child without the disease. Just as it is possible for 2 people who are
disease free to have a child who does have the disease. This is true, as far as I know,
with any genetic based object, be it disease or hair/eye colour.
If the genetic research could show which gene is potentially an open door for the
disease, and a person could modify thier diet or habits to keep from being exposed to
the triggers, that would be of benefit.
> Some of the comments are either factually false or quite close:
>>> Better medical care might explain the increase
>>> too; people that would have died young without children get care and
>>> go on to have children of their own.
>
> Again from wikipedia: "The usual onset [of CD] is between 15 and 30
> years of age but can occur at any age." Another source I forget the
> name put the median age at 26, I think, but correct me if I'm wrong.
> America would need to have very bad medical care indeed for it to
> effect the age of onset to the extent needed to have a birthing
> impact. This disease typically strikes in the prime of life when
> babies are made. The fact that CD usually occurs at a young age but
> can occur at any age doesn't suggest the typically predictable nature
> of genetics either.
The other issue to consider is the randomness of remission. Flares are noticed and that
is when treatment is started. It doesn't mean that a person isn't diseased prior to
that time. They could have had the disease since birth, but some other factor
(environment has also been postulized) brings out a flare and at that point the disease
becomes "known". And not all suceptabilities are ever realized. It is possible to test
positive for a disease you never get, but carry the code for.
> Although there are many strange theories out in the world, I will need
> evidence to stop believing the overwhelming evidence that CD is
> bacterial in origin, and start believing studies that have been tried
> but have had less success. One of the studies I first referenced
> points out that greater than 90% of severely affected CD patients were
> put into remission longer than their 2 year treatment w/ antibiotics,
> w/o the use of steroids, surgery, etc. This percent is arrived at by
> not counting that couple patients that dropped out early otherwise the
> number is around 80%. They needn't be included, in my opinion, because
> they didn't undergo treatment, but 80% is still significant.
>
> From this site: http://alan.kennedy.name/crohns/welcome.htm#medical I
> found that Kosh's postulate has been fulfilled at least in part, and
> possible to a greater extent than leprosy, for MAP and CD! This small
> study in particular is very interesting:
> http://alan.kennedy.name/crohns/research/animal/chicken.htm The study
> is from 1991, but CD is still the same disease, people haven't changed
> much, and chickens haven't changed much either. The studies are out
> there and researchers would like to conduct more research if you
> believe what they write, and I do. Regrettably more funding is put in
> disease management.
Alan has always had a good site. Which is why I am thinking that there is less interest
in MAP since he doesn't seem to have much new information. His site is where I would
expect to find mention of new studies. I admit I haven't regularly perused his site,
but I do look at it from time to time. Even the PARA website doesn't appear to have
been updated in quite a while. I would think they would have breaking news on thier
website. I understand Alan is not as active as he once was, but if there was something
new, as much as he was involved with this, at least a mention would be expected. And
nothing at all on the PARA website since 2004. They are where he suggests a person goes
to look up information on MAP/RMAT/etc.
>>> Under most health plans, longer treatment = less income. It becomes
>>> more tiresome and costly for the doctors to
>>> continue treating since many programs put time limits on treatments,
>>> or don't cover them at all.
>
> I strongly disagree. Dr.s are only a part of the equation, but the
> truth still holds - supply and demand is a law not a theory. If
> patients want to avoid reinfection that is probably very simple as MAP
> is an obligate pathogen it is typically found in milk that was under-
> pasteurized, such as in America. Further explanation are found in
> previous links (look for got milk).
The trouble with the milk postulate is that if it were MAP in milk, then one would
expect that everyone who drinks milk would be diseased. However, that is not the case.
Which is why I am thinking that MAP and other "causes" are just opportunists. There is
something else which creates the opening. So far, genetics is the direction this seems
to indicate.
> Prescription drug manufactures
> which are now a multi billion dollar industry do in fact clearly
> benefit from selling a lifetime of medication as opposed to less than
> 2 years worth of antibiotics. Sad to say, surgeons also benefit from
> our illness more than health. Some Dr.s are undoubtedly altruistic
> and very bright. I read about Dr.s that to this day still treat CD
> patients with antibiotics - heroes in my book especially considering
> the opposition. But if everyone were healthy where would that leave
> Dr.s and pharmaceutical companies? The problem for Dr.s is that if MAP
> is the cause - evidence points to yes more that competing theories as
> verified by more stages of Kosh's postulate being fulfilled etc. -
> then not only can patients stop paying for drugs, but they can avoid
> further problems, and future customers/patients can also avoid this
> misfortune. Milk, and only under-pasteurized milk is the principal
> problem for humans, as other foods are typically cleaner or cooked
> more.
In the specific case (a case of one) that I am familiar with, the doctor was not
interested in surgery. He intended to treat with anti-inflammatories and other known
treatments (I don't recall antibiotics though) and the patient almost died. The
medications were masking the damage being done, and the intestines were perforating.
Blood tests never showed an elevated white count, so it wasn't until extreme pain and
the decision for an exploratory surgery that the extent of the damage was found.
Afterwards, the standard maintenance drugs (Pentasa comes to mind) seemed to help. It
wasn't until Remicade that there was noteable improvement. During times of antibiotic
treatment for other ailments, no noteable improvement was seen (the Dr. did check). We
were fortunate to have a doctor that did listen, as we learned more about the disease so
did he. We did discuss with him the MAP and he felt that there was no benefit _in this
case_.
>>> If MAP proved out, you don't think the community wouldn't get behind
>>> it?
> History says no, and I agree with history because it is predictable in
> this regard. Medical practitioners will ignore mounting evidence as
> long as possible if the incentives are right. This is of course a rule
> not everyone is a good little pharma scout. I'm curious what you mean
> by "community" as this isn't a united front. If by community you mean
> patients, then I wish to point out that you are very reluctant to
> believe evidence that isn't supported by a majority opinion, either
> majority of authority figures or in general. Your statement 'If ....
> don't you think ...?' is strikingly similar to the fallacious thinking
> 'if something is a good idea then the good idea must be supported
> popularly.' There are plenty of instances of times when the majority
> of the population believes total rubbish. Authority often endorses
> rubbish ideas as well. Instances would be ulcers and stress, Zeus,
> blood letting, etc. We can't wait for a heroic Dr. to figure it out to
> know what is in our best interest.
I would rather have testing done and the product shown to have merit than just jump into
a product because preliminary evidence suggests assistance.
This is something I have seen time and time again. Studies are done, they show promise
and people get behind the idea and want to know why it isn't available yet. Other
drugs/treatments which show promise and do get released end up showing longer range
drawbacks and the company (and agency which allowed the release) get vilified.
I agree, MAP does show promise. And apparently there are no long term drawbacks since
the tests and research were done a while ago and no one is screaming lawsuit for health
problems today. But I do think there is more to the disease than just MAP, and it does
vary from individual to individual. My understanding of the MAP problem is that MAP
isn't as easy to detect in humans as Johne's is in cattle. Unless that has changed.
Maybe more research should be into identifying MAP in humans, then people with MAP
induced Crohn's could be correctly and effectively treated.
>>> No, my take on it is that when the very people who were pioneering
>>> the research stop researching it, and stop
>>> trying to get funding, then it must not be proving out.
>
> There are many more quotes like this in the papers I quote; this one
> is from http://alan.kennedy.name/crohns/research/chemo/htfull.htm :
> "In conclusion, these data suggest that treatment with rifabutin in
> conjunction with a macrolide antibiotic is a safe combination that may
> induce and maintain remission as well as abolish steroid dependency in
> refractory Crohn's disease. As a proportion of patients with extensive
> Crohn's disease resistant to standard medical therapy respond to RMAT,
> further evaluation of this treatment as an additional therapeutic
> option is of great importance. These results justify a randomized,
> controlled trial to assess the efficacy of this therapeutic approach
> taking into account the standards for approval of new drugs for
> inflammatory bowel diseases."
Yes. The evidence does/did suggest that more research was needed. There was a doctor,
whose name escapes me, who was discussed here several years ago. He was doing RMAT/MAP
research. His first two studies were promising, but the third was a disappointment. At
least that is what I remember. Didn't hear anything about him after that.
> These patients were not mild, they were severe cases. Despite the
> failings of the past the good scientist Gui, still recommends "a
> randomized, controlled trial". The researchers do in fact want to
> continue with their research as it is so successful, not the other way
> around. I can find more quotes if that is helpful. The researchers are
> very bright and explain why research in the more distant past was
> unsuccessful where here and with many other underfunded studies there
> was so much success. Remember the researchers don't get funding
> directly from us, they TYPICALLY do applied research for a
> pharmaceutical company or other group with more money than God.
> Thankfully the pharmaceutical companies occasionally let something
> good slip through the cracks.
Did they do more research? Did they continue? This was 10 years ago, is there any more
information?
>>> No, your doctor prescribed what he knew. Are you saying that
>>> somehow all doctors should know instantly what will
>>> and won't work, and that they should embrace every new discovery?
>>> Instead of doing what they have done before and
>>> had good luck with?
>
> The good Dr. should have knows because his job as a gastroenterologist
> is to know guts, and the misinformation he has been using was obvious
> wrong well before he treated me (he had about 2 decades to get things
> straight on a topic of crucial importance to his field of work). The
> Dr. believed what he wanted to believe not what was logical. And yes,
> Dr.s should embrace every new discovery that is tested for years and
> proves itself to be the most likely correct solution. When to start a
> new treatment is a gray area, but horrible theories that have no basis
> for reality should never be adopted. The point is that he never really
> had "good luck" with the traditional treatments.
I have met several Gastro's. Some are surgeons, and obviously those opt for surgery
more often than others. Some are more cautious. Some are more open to suggestion.
Oddly, I have found all 3 in one practice together. :(
> A Dr. had to infect himself, document health before, gastritis after
> infection, and health after antibiotic treatment to get decent
> attention for this causal relationship. Before that Dr. the evidence
> was mounting similar to MAP and CD, but he made it in our face so only
> really stubborn Dr.s totally deny the powerful connection to this day.
Sorry, I don't agree that this proves anything. I am not always sold on the other tests
done on lab rats or other animals. If something is induced, then all the test
accurately and positively shows is that the treatment works (or doesn't work) on the
induced condition. Unless the people have the disease induced, I am not completely
convinced that the experiment and results prove anything beyond a casual relationship
that may need further testing and research.
Inducing a problem may be a valid research tactic, but people are more complex and the
causes of diseases may be more than what appears on the surface. If you induce a
disease, or at least the symptoms of the disease, have you -really- created an accurate
example? Or have you just created conditions that will prove your theory (a staged
example)?
> Similar to CD and MAP people pointed out that more people have H.
> Pylori than have ulcers and gastritis. And this is where I expect you,
> Doc, would chime in and say, 'genetics and environment have a role to
> play, but H. Pylori is the principal causative agent and is necessary
> to develop full blown ulcers.' I get the impression you would point
> out the complexity of the situation, and I would point out that one
> bacteria is absolutely necessary in the majority of cases to cause
> disease where genetics can't be proven to a reasonable threshold to
> have an effect. In short there is some noise to the equation
> (genetics, environment, stress?) but still a great deal of
> predictability. The only way to cure an ulcer reliably is with
> antibiotics, which partly demonstrates a causal relationship. By the
> way the second leading cause of ulcers is NSAIDS. How many Dr.s warned
> us that aspirin can cause ulcers? The answer is a shameful amount.
Ulcerations can be caused by any medication. I can swallow acid and get ulcers.
Antibiotics won't cure that one!
That is an extreme example, I use it to illustrate the problem with a one size fits all
solution.
Stress can still cause ulcers. Asprin can cause ulcers. Pentasa can cause ulcers.
It's a question of where is the ulcer located, what has happened in that area, what has
the person been doing/eating/breathing prior to the ulcer. H. Pylori causes some
ulcers. That is great news and helps a lot of people. I haven't researched H. Pylori
enough to know how many people are exposed to it that don't get ulcers, so I don't know
if it actually relates to exposure to MAP or not, so I can't postulate on whether it is
an opportunist or the cause.
I do know that people on long term medications can get ulcers in the esophagus,
especially on the LES, which leads to a form of GERD where the person will need to
regulate thier stomach acid content due to the LES no longer closing properly. Which
means more medications... :(
I do know that NSAIDS and other drugs can cause ulcerations in the system, those are
healed by withdrawing the medication and allowing time to heal the ulceration.
Antibiotics would only assist if the ulceration is infected (which it might be) but are
not healing the ulcer, just allowing the body to heal it by removing any other unwanted
attackers. As I understand the H. Pylori issue, it IS the cause of the ulcer and the
antibiotics remove it and the ulcer heals.
> Today almost the same exact story is being acted out with CD and MAP.
> Dr.s refuse to believe evidence. Big pharma takes Dr. Doe and his
> entire staff out for free lunch to discuss amphetamine deficiency in
> children. Dr.s are prescribing medicine that in the short term
> diminish symptoms but don't cure and, if MAP is the cause are doing a
> great deal of harm.
>
> For the sake of argument, assume I'm biased to hate big pharma. I have
> had very negative experiences that may not be characteristic of the CD
> population at large and their relationship with Pfizer or whatever.
> But I have had some positive experiences. The point still remains that
> there is a significant financial inventive for a capitalist based
> health system to maintain a certain level of symptoms. Countries like
> Sweden and a few other more socialized modern countries have taken a
> more aggressive approach. Sweden for instance, I have read, has signed
> an initiative to eliminate MAP in cattle because of the threat that it
> causes CD. Also this is part of a bigger pattern of medical denial of
> true science in favor of financial incentives.
I can't argue with your position. I do know that often the medicines a doctor
prescribes, especially the ones he can give out as free samples, are based on
advertising and sales pitches.
Until people are perfect, we will follow the dollar. And will continue to make mistakes
and errors. Can't be helped.
I'd rather all the research and medications were done to benefit man and not for
profit... but if I beleived it would happen that way I would be crazy. Don't you think
that if the MAP studies had proved out that the pharmacuetical companies wouldn't have
started marketting pills/elixers with the antibiotics you need? That they wouldn't have
been hardselling thier products over any natural ones? The more oportunities to make
money for them, the better. Why limit to one product to treat one disease when you can
sell multiple products for one disease. Better market presence and more income.
> Do the math. How much does each bottle cost that a typical CD patient
> takes in during the course of a month? How long do we typically live
> after diagnosis; over 2 years? Most patients already ARE lined up for
> the newest ineffective long term disease maintenance program
> available. How much does surgery cost? Follow they money and many
> answers will be revealed. Why cut the supply of income short?
CD patients can live to their "normal" date of death with minimal maintenance. Some
have it worse than others and will get ill faster and maybe wouldn't live as long if
untreated. Some spend their entire lives with minimal flares and mostly remission. The
disease isn't cut and dried, remissions aren't something you can count on.
> Reinfection is easy to avoid if you know the cause. If if we were
> reinfected once every other year mycobacteria grow slow. Also dairy
> would take a beating in the market. Most dairy tested in U.S.A. does
> have live MAP according to all but about one study done by the FDA I
> think. They froze the milk dehydrated it and then pasteurized it as
> normal.
Therein lies the problem with MAP being the cause. If it were the cause, such as H.
Pylori has been shown with some majority of ulcers, then more people would be diagnosed
with Crohn's since milk is a high consumption product. The fact that not everyone who
drinks milk gets Crohn's either suggests that not all milk has MAP in it (which you
state it does) or it isn't the cause, just an opportunistic bug. Granted, not all
people will react to a bug anyway, I am sure there are people who don't get ulcers from
H. Pylori either. But the incidence isn't high enough to prove out MAP=Crohn's. And
while the case I know if is a study of one, antibiotics did not make a noticeable
difference, especially in the long term while Pentase, Immuran, and ultimately Remicade
did make differences.
>>> There was, several years back, a lot of study being done on MAP. It
>>> didn't prove out, and so funding and studies
>>> have dropped off.
>
> Doc, on the topic of past research, one standard works both ways. If
> my studies are too old then ones before them are far too old. But all
> of this is relative so far. Now the situation is that the recent
> research - post macrolide treatments - are better overall than the
> past research before which used: 1. the wrong type of antibiotics 2.
> the wrong combination of antibiotics 3. antibiotics for a far too
> short duration etc. These and other facts easily explain the remaining
> 5 - 20% of the patients in these well done studies that don't show
> long term progress for a long period of time (more than 2 years in
> some studies), and these explanations according to researchers on this
> topic say explain why CD wasn't aided by antibiotics earlier. Old
> studies (by my standards pre-macrolide antibiotics) used antibiotics
> that were effective against TB but not MAP. You can't drown a fish
> even with lots of water, and MAP can't be killed with certain
> antibiotics even large amounts. Saying that many studies were
> fruitless while factually true is misleading by omission of facts. And
> any Dr. or person for that matter who holds this information from you
> is probably either deceptive or ignorant. The earliest studies should
> be disguarded when a better explanation replaces no explanation
> (superstition magic etc.), or a poor explanation, but not because they
> are old. Old is relative, besides.
The difficulty is that there are no recent studies. No recent programs. Which leads me
to beleive that as a single cause, MAP has been ruled out. HOWEVER, I wish to point out
that I don't agree with just forgetting the research that has been done either.
I still think there is more than one form of Crohn's. Since the disease seems to affect
people differently. Not everyone gets the disease in the same areas. Not everyone
responds to the same treatments. I don't think a blanket solution will be found. I do
beleive there is more to it than just bacteria, but only time will tell on that as well.
Genetics looks promising, but even that hasn't found one single marker in every patient.
What the current research will show (to those who are willing to look) is that Crohn's
has many different variations or is different diseases with similar identifiers.
I do beleive that Crohn's is an autoimmune disease. I also beleive it could be
"caused" by MAP. As in MAP induced Crohn's or Automimmune Crohn's.
I don't like the way research tends to be done. All or nothing research seems to be the
norm. Absolutes don't really exist, and the way research and treatments are done does
exclude potential solutions that would benefit some people.
> What's amazing to me is that you can read over 90% of the patients are
> completely off of antibiotics, and all other prescription medication
> and have no signs of active disease, and write that the success
> stories are shaky science or unimpressive. The results were replicated
> several time, many studies showed a statistically significant
> relationship, and the logic is all quite convincing. I've tried every
> dim witted idea in the book as well, and your right to say that
> nothing is conclusive, but no theory will ever be absolutely
> conclusive with anything. MAP is a theory that explains CD better
> according to science and logic, but not special interests. And yes big
> pharma is not my friend; I don't think they are your friend either.
I attended a few CCFA meetings. Got to meet a gentleman who had tried everything that
had been proposed for Crohn's. He never quite got "cured". He was in his late 70s when
the disease suddenly went into complete remission. One the one hand, he was happy to be
limited to only a maintenance regime, but on the other hand he wished it had happened
back when he had more youth so he could enjoy himself more.
My problem with "cures" or continuing success is that the disease can and will go into
remission without any idea of why it did. Which brings up, in my mind, that anytime a
regiment shows a clear pattern like MAP of a solution, I would like to cheer... but only
time will tell if this is a solution or the stupid disease messing with these people.
Sorry, I would love to cheer... but have seen too much failure, pain and disappointment
to accept cures or solutions easily.
> What I'm doing now is to try to put together an over the counter
> regime that is equal in effectiveness to the prescribed ones that have
> proven their effectiveness already. This is difficult to say the
> least, but I have been experimenting and researching for years. I
> already have figured out enough to gain all my weight back plus some
> and most of my health w/o any prescription meds and with horrible
> advice from friends and family, well meaning of course. I already have
> a dietary and lifestyle regime that for me works 100% of the time but
> is too difficult to realistically follow for months at a time. No I'm
> not cured yet, but I feel pretty dam close and objectively measurable
> symptoms verify my opinion, and I'm not gonna stop experimenting on
> myself until I'm cured.
And by all means continue. Not that you need approval from me or anyone else, but I do
applaud your efforts. Keeping in mind that what works for you may or may not help
someone else. Of the diseases I have been aware of (direct contact with family or
friends) this one is an annoying one since there seems to be so many variables.
> I hope to hear from people that are fellow
> scholars whom experiment with different herbs. Eating more than a cup
> of coconut oil a day is difficult but it puts me in remission if I
> don't take in drugs as well - nicotine, caffeine, alcohol, etc.
Coconut has been mentioned as helpful before. Macaroon cookies seemed to be a fun
source of this, as I recall.
> Perhaps I would be cured like the cows in one of the studies I
> referenced if/when I'm more disciplined, but for now I'll just try new
> herbal combinations w/ coconut oil until I can smoke, drink, etc. or
> at least eat less coconut oil. By the way, what I'm doing now is much
> much cheaper than taking prescription pills from America (China is
> much much cheaper for any route but I can't afford to go to China or
> other places yet). Also I just found some interesting studies on the
> in vivo effectiveness of herbal extracts on TB which is related to
> MAP. All the ingredients are less than a cup a day so that means I may
> possibly find a synergistic combination that allows me to eat less
> coconut oil - something that is much easier to comply with.
Great. And I hope you acheive health.
> Now, if you have something that makes prescription med and symptom
> free for over 2 years by the majority of severely afflicted CD
> patients seem unimpressive, I would really like to read about it. Even
> if you were a board certified gastroenterologist I would want to know.
Don't I wish. The closest we could ever become to this is if the government decreed
that all medical costs are now fixed, and all covered by the government with a modest
increase in taxes (which would be offset by the money we would no longer need to spend
on copays, private insurance, etc). The only way this will happen is if we get a
dictatorship with a benevolent dictator. Which will probably only last, at best, until
his death and then some greedy SOB would get into power and everyone would be shafted.
There is no easy solution.
We are all biased to some point. We have our beleifs and causes. Not always monetary.
I do come off as someone who beleives in doctors, maybe I have just been lucky enough to
find doctors who seem to care and are willing to listen to thier patients (even if they
have to have a "knocking at deaths door" scare to make them realize they might be
wrong). Or maybe I am just more annoying in person with these people that they listen,
prescribe, answer questions, etc just to get rid of me quicker. I spent a lot of time
reading links to studies and research. Buying books, perusing the library shelves,
reading reports, and talking with people to try and find solutions, or at best something
that would bring back a quality of life. I don't think I have found the answer, and at
times it doesn't seem to matter if I do. All the work I did was for my (now) ex-wife
and since she has left it seems moot. But my current wife has some problems. My mother
has Colitis (but won't talk to me about it much) and I suspect my daughter has a problem
but hasn't shown enough sign to be properly diagnosed. So I still read here, interject
a little and hope to learn from discussion such as this. I hope to come across as
someone who is questioning and learning, but I know I also come across pretty harsh
sometimes. My moods aren't perfect either.
I have tried to present my thoughts and comments here. I didn't answer immediately
because I didn't have time to fully read what you wrote until today. My life is pretty
hectic sometimes, and since I try to have intelligent discourse, I had to wait until I
could at least read your entire post and check the links you provided.
Mr S
(Although it was high in grains and carbohydrates (fruits) not much meat). I
was diagnosed with Mild UC after a bug infection. Now it seems under
control, but I am eating more meat (fish, chicken, red meat) less fruit and
more vegetables and staying of any processed foods. For me it may have been
an over response to a bug, but this has not been proven so I'm sticking with
a diet change.
<zumon...@yahoo.com> wrote in message
news:14cc7a3b-b3fe-400e...@s50g2000hsb.googlegroups.com...
jin...@gmail.com
>
reported at the turn of the 20th century, but since then, the disease
has continued to increase in prevalence dramatically." This may also
be mentioned in a report done by the European Commission.
A report, written by the European Commission on Crohn's disease in the
year 2000, says similar statements.
http://ec.europa.eu/food/fs/sc/scah/out38_en.pdf Although northern
countries have plateaued or so it seems, the southern European
countries are still on the rise as of 2000.
We can all agree the difference is not due to genetic alone in such a
time period. That means either environmental factors are present that
caused a dramatic change - an idea also endorsed by the European
commission as well, or testing for CD advanced only recently.
Interestingly the commission reports that Asians with typically low
incidence rates rise to the level of their home country when they
move. Genetics clearly have a role as demonstrated by hereditary
studies, but the role it has is not causal. Asians can't change their
genetics by migration; therefore, genetics are not causally involved
in the outcome of CD.
> Well, the same Wikipedia article you got the other information from also addresses the
> genetic component.
>
> "Mutations in the CARD15 gene (also known as the NOD2 gene) are associated with Crohn's
> disease"
> If the genetic research could show which gene is potentially an open door for the
> disease, and a person could modify their diet or habits to keep from being exposed to
> the triggers, that would be of benefit.
A study like that would be a way to prove/suggest genetic causality
over involvement, but something quite different has been shown. If
genetics suddenly explain CD better than MAP and more predictably I
will revoke my previous opinion. In addition I discovered more
research that implicates MAP as the ultimate causative agent for CD
and demonstrates how Mycobacterium cause greater numbers of E. coli to
proliferate in CD patients. I will share that in a separate thread.
> The other issue to consider is the randomness of remission. Flares are noticed and that
> is when treatment is started. It doesn't mean that a person isn't diseased prior to
> that time. They could have had the disease since birth, but some other factor
> (environment has also been postulized) brings out a flare and at that point the disease
> becomes "known". And not all suceptabilities are ever realized. It is possible to test
> positive for a disease you never get, but carry the code for.
>
> > Although there are many strange theories out in the world, I will need
> > evidence to stop believing the overwhelming evidence that CD is
> > bacterial in origin, and start believing studies that have been tried
> > but have had less success. One of the studies I first referenced
> > points out that greater than 90% of severely affected CD patients were
> > put into remission longer than their 2 year treatment w/ antibiotics,
> > w/o the use of steroids, surgery, etc. This percent is arrived at by
> > not counting that couple patients that dropped out early otherwise the
> > number is around 80%. They needn't be included, in my opinion, because
> > they didn't undergo treatment, but 80% is still significant.
> Alan has always had a good site. Which is why I am thinking that there is less interest
> in MAP since he doesn't seem to have much new information. His site is where I would
> expect to find mention of new studies. I admit I haven't regularly perused his site,
> but I do look at it from time to time. Even the PARA website doesn't appear to have
> been updated in quite a while. I would think they would have breaking news on thier
> website. I understand Alan is not as active as he once was, but if there was something
> new, as much as he was involved with this, at least a mention would be expected. And
> nothing at all on the PARA website since 2004. They are where he suggests a person goes
> to look up information on MAP/RMAT/etc.
>
Another example for clarity. Popular media including FOX news/
entertainment in America has constantly underreported the role of
humans in global warming that peer reviewed journals have stated
almost unanimously. Appearances doesn't = reality. The company with
the most funding isn't necessary correct in its assertions are not
always in our best interests. The same goes double for most
government employees.
Interest is still around. But opinions/interest don't prove
anything. I can't prove CD is caused by anything based on a survey of
anyone, not even Drs. I can't prove the ultimate cause of the
collapse of the Soviet Union based on opinions either. I can prove
opinions based on opinion polls, however. If opinions changed reality
the world would be quite different right? Thinking a certain way,
pretending something is so, and expressing 'expert' opinions, doesn't
change reality even a bit. These are not effective ways of detecting
reality as well. Religion is a great example. More people are
converting to Islam than Christianity. Does that prove that
Christianity is false. Does God love Muslims more? If so why hasn't
this trend always been true? Then again the expert opinion of priests
is that Islam is a sham. You don't see any priests funding research
on the possibility that Islam is better. Perhaps that means that
Christianity is better. You see this is a slippery slope. I can give
lots of examples if this is not clear. H. Pylori, ulcers, and
majority Dr. opinions were one example of how this thinking is flawed
as well.
Have you explored every plausible reason why research, including
incredibly promising research, has been less well funded than more
financially advantageous research and development? I suggest there
exists at least one other reason a lack of funding is present in MAP
research overall (MAP-CD research shows no demonstrable increase or
decrease over time in research as I have found and will show in
another thread). I have to review a past point. Ulcers had the same
path I proposed. Antacids and other medications can't be taken over a
lifetime and thus are not profitable in a healthy patient lacking the
bacterium H. Pylori. A months worth of antibiotics are much less
profitable than a lifetime of antacids and prescription proton pump
inhibitors. Why do Dr.s prescribe the wrong medicine despite better
knowledge? I propose most people know where their bread is buttered.
Your lack of interest doesn't prove or disprove a theory any more than
big-pharma's lack of interest in a cure. Do you acknowledge that
financial incentive could impact Drs.? Need I remind you by law a
corporation must act out of financial interest? Although antibiotics
are expensive they are only needed for a small percentage of a
lifetime. Surgery is an alternative to antibiotics, and it requires a
more expensive lifetime of treatment that never seems to help overall,
only for a brief temporary period. The cost differences are huge. So
experts have every financial reason to oppose a MAP theory. In
addition milk is a multi billion dollar industry over the U.S.A.
Knowledge of the POSSIBILITY that MAP causes CD could cause a huge
loss of profits.
> The trouble with the milk postulate is that if it were MAP in milk, then one would
> expect that everyone who drinks milk would be diseased. However, that is not the case.
Not so with most infectious diseases. That assumption would be an
easy to make, so I'm glad you brought it up. Take Mycobacterium
Tuberculosis. This pathogenic microbe has presently infected about 10
times the number of people that show visible symptoms (1/3 of the
entire human population has been infected!). Many people will not
only incubate the bacteria the months necessary to have visible
symptoms but will never show symptoms. Why are millions more not
showing symptoms of TB? Well diet, genetics, and environment all play
a participatory role; we can logically imagine. While a low protein
diet is NOT NECESSARY for all people to acquire symptoms of TB, but
ALL people require MTB to come down with symptoms of TB, so it is the
necessary causal agent to the disease tuberculosis. Genetics,
nutrition, etc. play a secondary role.
> I would rather have testing done and the product shown to have merit than just jump into
> a product because preliminary evidence suggests assistance.
>
This is the best shot as of today. RMAT, immune stimulation, and the
like have demonstrated the best treatment options to date, that I know
of. Where are the studies that show otherwise. What studies can't be
easily dismissed because they were poor quality or have serious
systematic flaws. What treats/ cures CD better than RMAT? I have
found nothing better than a specific combination of antibiotics. Why
reject a wonderfully effective and cheap option? Even if a million
Drs. and pharmaceutical reps were to tell me Mercury is the best
treatment option for CD, I would flatly reject their opinions unless
they had good evidence beyond other options that this is indeed safe
and effective. Not only do both assert this is a genetic disease w/o
evidence they do so against evidence.
The problem is not that RMAT is promoted w/o cause. The problem is
that mysterious, vague, and profitable forces have been given a free
pass. Some diseases aren't treated until they are understood. With
CD a Dr. will say when pressed on the cause something like 'well yes
we don't actually know but I feel that emotional stress plays a large
role.' Words like feelings are great when talking about emotions not
facts. I have not seen anything more than minor circumstantial
evidence presented that stress or genetics could have a role to play.
That statement is repeated quite often; however, and thus its
perceived validity is high. There is an association with genetics,
but that doesn't prove causality. For instance, I'm lactose tolerant,
like 20% of the world. Does that mean that the lactose tolerance gene
causes CD? Perhaps other people with lactose intolerance are ill,
then what? Studies done on MAP with respect to CD have demonstrated
causality in several studies. Where you and I draw the line on the
amount of evidence is fair game. Funding is no evidence of fact
though. Several Drs. saying they 'feel' that CD patients cause their
own illness is not evidence either.
As for preliminary evidence. A few studies are preliminary, but not
dozens of studies using antibiotics, many more studies on the
incidence in blood, intestines, lymph, and many other tissues. All of
this reinforces a narrow theory: MAP causes CD but is difficult to
detect and cure. MAP requires a very specific antibiotic regime, and
is as difficult to detect as in sheep. I didn't even mention before
now all the case studies that have been done. Many countries have
invested quite a bit of money, and continue to do so, on reports on
this very matter. A few animals have been given symptoms of CD after
being fed the bacteria from CD patients. Then after antibiotics they
were cured. The only reason I can say cured there and not with people
is that chickens have less financial incentives against their health
than people.
> My understanding of the MAP problem is that MAP
> isn't as easy to detect in humans as Johne's is in cattle. Unless that has changed.
> Maybe more research should be into identifying MAP in humans, then people with MAP
> induced Crohn's could be correctly and effectively treated.
MAP in humans Sheep and maybe other animals is very difficult to
detect, quite right. Good point. A phenotype expressed in MAP
typically results in the difficulties in detection usually seen in
sheep. I have read, but I'm not certain on the point, that apparently
MAP either expresses a gene to inhibit cell wall production -
rendering the acid stain test totally ineffective, or the MAP bacteria
come in a different form of the same subspecies kinda like - ones a
brown another is blue, but both are nasty.
> Did they do more research? Did they continue? This was 10 years ago, is there any more
> information?
Doesn't matter if they did or not. You suggested that scientists had
no faith in this theory. They do, but that doesn't matter anyway;
opinion doesn't change fact. Popular trends don't change facts.
Popular trends are not by themselves a measure of facts. The Chinese
have a phrase for this: 3 men make a tiger. The story goes, 'If one
man said the palace has a tiger on the roof, is that so? King says:
No clearly so. If two men say this is so, is it so? King says:
Clearly no. What if 3 ... King says: Well maybe then.' This was a
supposed conversation between the emperor and his advisor about to
leave on vacation and whom worried of harmful gossip. He left and was
later imprisoned because the king believed the gossip he was warned
not to believe. Actually, 3 men can't make a tiger. And even a
million researchers can't wish away reality. Most people tell the
truth, but in science health etc. a higher standard is required than
hearsay. I wouldn't expect you to say that smoking doesn't cause
cancer because cigarette funded scientists no longer fund cancer
research.
If you really want to know what is done about antibiotic research
recently, then tell me exactly what you define as recently. I have to
point out time has never been shown to change facts or make facts. A
good study is still a good study, and visa versa. You may be barking
up the wrong tree, but I'm willing to go along with this if you just
give me a concise definition of recent. After all we both saw there
is at least one company seeking to or claiming to seek phase II
clinical trials for FDA approval.
> I have met several Gastro's. Some are surgeons, and obviously those opt for surgery
> more often than others. Some are more cautious. Some are more open to suggestion.
> Oddly, I have found all 3 in one practice together. :(
I feel your pain. I know they are people too, but sometimes I
wonder.
> Sorry, I don't agree that this proves anything. I am not always sold on the other tests
> done on lab rats or other animals. If something is induced, then all the test
> accurately and positively shows is that the treatment works (or doesn't work) on the
> induced condition. Unless the people have the disease induced, I am not completely
> convinced that the experiment and results prove anything beyond a casual relationship
> that may need further testing and research.
This is Kosh's postulate working for us. This is the gold standard or
close to it in order to prove a microbe causes a disease.
This is cool stuff: http://en.wikipedia.org/wiki/Stomach_ulcer
http://en.wikipedia.org/wiki/H_pylori The whole story is quite similar
to what is happening today with CD and MAP.
> Inducing a problem may be a valid research tactic, but people are more complex and the
> causes of diseases may be more than what appears on the surface. If you induce a
> disease, or at least the symptoms of the disease, have you -really- created an accurate
> example? Or have you just created conditions that will prove your theory (a staged
> example)?
The odds that another cause is responsible for all of the observed
reactions to repeated tests and experiments would be quite small.
This isn't just inducing a disease. Document health, implant a bug
from diseased tissue, observe poor health, culture more bugs, cure and
document cure with antibiotics that are effective on said bug. That
is really specific, and I can't imagine all criteria being filled and
yet all that is observed and predicted was just a coincidence.
> Ulcerations can be caused by any medication. I can swallow acid and get ulcers.
> Antibiotics won't cure that one!
True but, as I said earlier, the majority are caused by H. Pylori. I
don't have to rule out the possibility that you induced an ulcer by
swallowing draino, though. I don't have to because its very unlikely,
and swallowing draino would be obvious for the most part. The second
most likely cause is NSAIDS, often prescribed. I think alcohol is a
close third, but I could be wrong on that. The majority of cases are
cured with antibiotics, not draino or acid. Why focus on the least
likely causes? Furthermore why prescribe drugs that are PROBABLY
harmful? What are you trying to prove? Are you trying to show that
there is always some exception no matter how strange and unlikely? If
you had a friend with an ulcer what would you recommend?
> That is an extreme example, I use it to illustrate the problem with a one size fits all
> solution.
The nature of science I think is one size fits all at the basic
level. All of science is united by its presumption, its general
methodology, its logic, and procedures. All four qualities are
comparable in every science. You don't have to like it, but there is
no better solution. Nothing can be absolutely ruled out. Statistics,
science, logic, etc. dictate that we choose the answer most likely to
be true and useful. Religion and spirituality are there for people
that want to believe w/o evidence.
> Stress can still cause ulcers. Asprin can cause ulcers. Pentasa can cause ulcers.
> It's a question of where is the ulcer located, what has happened in that area, what has
> the person been doing/eating/breathing prior to the ulcer. H. Pylori causes some
> ulcers. That is great news and helps a lot of people. I haven't researched H. Pylori
> enough to know how many people are exposed to it that don't get ulcers, so I don't know
> if it actually relates to exposure to MAP or not, so I can't postulate on whether it is
> an opportunist or the cause.
Emotional stress has never been shown scientifically to cause stomach
or duodenal ulcers, to my knowledge. You know I'll read it if you got
it. Studies with monkeys under painful and constant electrical shocks
came close, but were insufficient and latter exposed as such. Also
there are many soldiers with PTSD that don't have ulcers. Aspirin is
an NSAID and so is included with all the rest as the #2 cause. I'm
referring obviously to stomach and duodenal ulcers. I didn't say H.
Pylori causes or even is associated with CD. I wrote that example to
demonstrate my logic and a similar situation to MAP and CD. MAP is to
CD as H. Pylori is to stomach ulcers with respect to medical opinions
but at different times.
> I do know that people on long term medications can get ulcers in the esophagus,
> especially on the LES, which leads to a form of GERD where the person will need to
> regulate thier stomach acid content due to the LES no longer closing properly. Which
> means more medications... :(
They are unfortunate exceptions to the rule.
> I do know that NSAIDS and other drugs can cause ulcerations in the system, those are
> healed by withdrawing the medication and allowing time to heal the ulceration.
> Antibiotics would only assist if the ulceration is infected (which it [likely is]might be) but are
> not healing the ulcer, just allowing the body to heal it by removing any other unwanted
> attackers. As I understand the H. Pylori issue, it IS the cause of the ulcer and the
> antibiotics remove it and the ulcer heals.
Well put.
> I can't argue with your position. I do know that often the medicines a doctor
> prescribes, especially the ones he can give out as free samples, are based on
> advertising and sales pitches.
Good we agree. Some are good some are bad, and money nudges opinions
without regard for truth and happiness.
> Until people are perfect, we will follow the dollar. And will continue to make mistakes
> and errors. Can't be helped.
These are not situations where one Dr. makes a mistake. This is not a
lie comparable to telling a bad date 'it's me not you'. These
examples are serious, systematic, errors that cost millions of dollars
and lives. Don't make the mistake of lumping in 'oops I dropped your
sandwich.' with 'oops I just recommended a health policy I know to be
ineffective but profitable for me, that will kill millions and ruin
the lives of even more!' Not in the same league. Ulcers are not much
less severe in terms of dollars and lives affected.
> I'd rather all the research and medications were done to benefit man and not for
> profit... but if I beleived it would happen that way I would be crazy.
That's what I'm saying!
> Don't you think
> that if the MAP studies had proved out that the pharmacuetical companies wouldn't have
> started marketting pills/elixers with the antibiotics you need? That they wouldn't have
> been hardselling thier products over any natural ones? The more oportunities to make
> money for them, the better. Why limit to one product to treat one disease when you can
> sell multiple products for one disease. Better market presence and more income.
Again because there is so much more money in long term treatment,
surgery, etc., and there is so much for the dairy industry to loose I
believe that even a few thousand dollars per patient is a drop in the
bucket. People could prevent illness and then no money would come big-
pharma's way. Dairy would loose big because less people would buy
cheap tainted milk. Even the people that somehow got infected the
treatment is so much less profitable than disease management. Let's
not even talk about people that could potentially be held
accountable. This only shows motive, though. The amount gained from
antibiotics is peanuts compared to the present alternative.
> Therein lies the problem with MAP being the cause. If it were the cause, such as H.
> Pylori has been shown with some majority of ulcers, then more people would be diagnosed
> with Crohn's since milk is a high consumption product. The fact that not everyone who
> drinks milk gets Crohn's either suggests that not all milk has MAP in it (which you
> state it does)
Because milk is mixed from all types of cows and we have drank so much
milk over our lifetime even 1% is a huge number that almost ensure
exposure over every milk drinker's lifetime. Not all milk cultures
positive, and not all PCR tests are positive in a gallon of milk but
more than a percent.
> or it isn't the cause, just an opportunistic bug.
Experiments can and do answer that question the best. But there is
supportive evidence for a causal relationship, such as symptoms of the
disease.
> Granted, not all
> people will react to a bug anyway, I am sure there are people who don't get ulcers from
> H. Pylori either. But the incidence isn't high enough to prove out MAP=Crohn's. And
> while the case I know if is a study of one, antibiotics did not make a noticeable
> difference, especially in the long term while Pentase, Immuran, and ultimately Remicade
> did make differences.
Differences or symptom suppression?
> >>> There was, several years back, a lot of study being done on MAP. It
> >>> didn't prove out, and so funding and studies
> >>> have dropped off.
I didn't read anything that demonstrates "didn't prove out". Could
you give an example? I have read about studies that used the wrong
antibiotics for an inadequate period. I continue to read more and
more reports/studies that demonstrate a strong relationship and very
often a causal relationship. Even with a hypothetical lack of interest
- I haven't conducted polls to be precise - there could be every
reason to believe this is a rerun of the ulcer fiasco years back. Are
there any other reasons for funding to lessen or press coverage to
change?
> The difficulty is that there are no recent studies. No recent programs. Which leads me
> to beleive that as a single cause, MAP has been ruled out. HOWEVER, I wish to point out
> that I don't agree with just forgetting the research that has been done either.
> I still think there is more than one form of Crohn's. Since the disease seems to affect
> people differently. Not everyone gets the disease in the same areas. Not everyone
> responds to the same treatments. I don't think a blanket solution will be found. I do
> beleive there is more to it than just bacteria, but only time will tell on that as well.
> Genetics looks promising, but even that hasn't found one single marker in every patient.
MAP affects individual cows differently but only MAP causes JD. So
one disease will present with some noticeable differences depending on
the extent of the illness and genetics among other reasons. This is
all in the report. I would have made the same mistake if I hadn't
read from http://www.johnes.org/ and other sources. The differences
are consistent with the differences seen in different cows with the
same disease, if that makes any sense.
> What the current research will show (to those who are willing to look) is that Crohn's
> has many different variations or is different diseases with similar identifiers.
There is no disagreement there.
> I do beleive that Crohn's is an autoimmune disease. I also beleive it could be
> "caused" by MAP. As in MAP induced Crohn's or Automimmune Crohn's.
That is not only possible but happens with other bacteria, however
typically this bacteria mediated autoimmune response happens while the
disease is being fought off. This happened to my uncle in China with
food poisoning, which caused autoimmune arthritis. However, we can
rule out long dead (more than one year) MAP bacteria as a cause
because of the success of RMAT treatment over the typical course. If
dead bacteria caused CD even after years then RMAT would not
demonstrate significant effects after one year compared to normal
patients. The difference is more than a coincidence given the large
percentages over many years and different studies.
> I attended a few CCFA meetings. Got to meet a gentleman who had tried everything that
> had been proposed for Crohn's. He never quite got "cured". He was in his late 70s when
> the disease suddenly went into complete remission. One the one hand, he was happy to be
> limited to only a maintenance regime, but on the other hand he wished it had happened
> back when he had more youth so he could enjoy himself more.
Sad, but that wouldn't even necessarily rule out things he tried and
failed at. You can do a treatment half way and receive no benefit.
> Sorry, I would love to cheer... but have seen too much failure, pain and disappointment
> to accept cures or solutions easily.
Would you give coconut oil a try if it were free of charge? The
lauric acid found at the rate of 45% in coconut oil has been used
successfully on JD in cattle.
> Coconut has been mentioned as helpful before. Macaroon cookies seemed to be a fun
> source of this, as I recall.
I used to shake my head when people told me how wonderful coconut oil
is. Well that was humbling. I didn't know macaroon cookies had
coconut.
> We are all biased to some point. We have our beleifs and causes. Not always monetary.
> I do come off as someone who beleives in doctors, maybe I have just been lucky enough to
> find doctors who seem to care and are willing to listen to thier patients (even if they
> have to have a "knocking at deaths door" scare to make them realize they might be
> wrong). Or maybe I am just more annoying in person with these people that they listen,
> prescribe, answer questions, etc just to get rid of me quicker. I spent a lot of time
> reading links to studies and research. Buying books, perusing the library shelves,
> reading reports, and talking with people to try and find solutions, or at best something
> that would bring back a quality of life. I don't think I have found the answer, and at
> times it doesn't seem to matter if I do. All the work I did was for my (now) ex-wife
> and since she has left it seems moot. But my current wife has some problems. My mother
> has Colitis (but won't talk to me about it much) and I suspect my daughter has a problem
> but hasn't shown enough sign to be properly diagnosed. So I still read here, interject
> a little and hope to learn from discussion such as this. I hope to come across as
> someone who is questioning and learning, but I know I also come across pretty harsh
> sometimes. My moods aren't perfect either.
That sounds great to me. Either way I still appreciate honesty over
manners when it comes to these important topics.
> I have tried to present my thoughts and comments here. I didn't answer immediately
> because I didn't have time to fully read what you wrote until today. My life is pretty
> hectic sometimes, and since I try to have intelligent discourse, I had to wait until I
> could at least read your entire post and check the links you provided.
Obviously I have the same dilemma and don't mind in the least. Thank
you for taking your time. I've taken out some segments for the sake
of brevity, no offense intended. I'll be looking forward to your
responses and any you may have on mannose's action on E. coli.