Sharing experiences on HPI
momfer
might figure out the ultimate treatment.
As for some it works 100% and others 60% or even not at all.
I am sure HPI this is the right path to walk as there aren't much
alternatives ;-(
I did it myself with the instructions received from Australia.
It was a bumpy ride but overall I am happy with the 60% result I got
after all those years of horror.
Scandinavian
that all that time eating, sleeping and crawling in the bush and
swamps was the reason for my stomach upset. After 2 months the
symptoms disappeared and in few years they returned with a vengeance.
Was diagnosed with distal UC (proctosigmoiditis) in 2003. Been in 8-10
months remissions and 3-4 month flares since. In 2005 by accident I
found a 3 line mentioning of HPI, at first did not think of it much
until I noticed the case research and the results with some 13 years
of symptom free periods. Since conventional UC medicine has never much
worked for me and I noticed improvement using probiotics I felt that
this was the way for me to go. Called the CDD in Sydney, sent my
papers and I got the HPI protocol with the instructions. Did a 10 HPI
course at home (with the antibiotic prep and diet) during December
2005 (at that time was already in my 4th month of remission). After my
HPI I remained in remission for 13 months until Feb 2007, basically I
set a record for my self with 17 months of total remission with the
help of HPI vs 8-10 months with conventional UC medicine...coincidence? -
> I DO NOT THINK SO! I believe I misjudged that a single course of 10
HPI session would be enough. Now I am waiting for the flare to go away
and have a new scheme for my next HPI attempt. This time if I am lucky
will do this in a much more consistent way with regular top ups each 6
months for 2 years. If everything goes well after 2 years will reduce
the top ups for once a year as long as it is necessary.
superman
more importantly what is the diet they want you to follow for the
prep?. because i can only eat eggs and unprocessed meats, certain
cheese's with no sugar and some cooked vegetables. if i begin to go
off this i become very mentally unstable, extreamely brain fogged and
diarrhea begins. its amazing how so many symptoms appear when i let my
diarrhea take hold. only to have them clear up upon my avoidence of
many foods. im just worried if i eat there prep diet i would loose my
job from the terrible sicknesses that would follow.
superman
it would run right through the digestive tract not just sit in the
bowel.
Scandinavian
The CDD recommends the use of one or two of the following antibiotics
for the min. of 10 days before the start of HPI: RIFAMPICIN,
VANCOMYCIN or FLAGYL. I used Metronidatsol (Flagyl) and Ciproxin for
10 days. RIFAMPICIN and VANCOMYCIN are very powerful antibiotics and
are reserved for e.g., Mycobacterium Tuberculosis so as I see it there
is a need for better judgement of what you use, since the part of the
antibiotics in HPI is not cure you but to eradicate gut bacteria and
if there are possible pathogens to weaken them.
Regarding the diet guidelines, there is nothing special about that. At
least 2 weeks before HPI the diet must be changed to a low fibre one,
similar to what one would eat during a UC flare. After the HPI the
diet must be changed to high fibre in order to help the new bacteria
grow and better populate the gut.
Regarding the diet many of you mention that you avoid foods even when
you are not having a flare? Carl and superman both mentioned eating
mostly eggs and meat? I do not understand this. If you are not having
a flare the diet must be balanced and include enough fibres. Is it so
that you have some kind of food allergies?
When I am feeling fine I strive to eat all types of food and
sufficient fibre, avoiding foods seems a sign of some other disease
than UC? Avoiding certain types of foods during a flare I can
understand, but once your are fine why avoid? For me a remission is
100% good condition and eating well without any problems and that is
the goal for my HPI treatment. When I said I was on a 17 month
remission, I meant 100% prime condition with 1-2 normal BM/daily.
Superman, mental instability is not normally part of UC symptoms? Do
you have UC or something else? Also I did not understand your question
regarding "digesting" stool? Why would you want to do that??? UC is a
condition relating only to the large bowel and in most cases only the
end part of the large bowel. UC only affects the tiny mucus layer of
the large bowel why would you want to treat your digestive tract? In
UC the stomach, digestive tract and small bowel are fine, the problem
is only the large bowel = colon.
superman
patients also suffer some form of mental illness. as the following
reference states. this only one of dozens ive seen.
Psychiatric disorders in patients with IBS
Several studies have shown that up to 70% to 90% of patients with IBS
who seek treatment have psychiatric comorbidity, most notably mood and
anxiety disorders. Recent studies have shown a high prevalence of IBS
in psychiatric patients who seek treatment, with a prevalence of 19%
in schizophrenia, 29% in major depression, and 46% in panic disorder
among other disorders
Garakani, A., et al., Comorbidity of irritable bowel syndrome in
psychiatric patients: a review. Am J Ther, 2003. 10(1): p. 61-7.
i am suffering fairly terrible mental problems when my diarrhea is
present only to have them vanish when i control my diarrhea with the
illimination of all forms of carbohydrates. returning my stools to 1
or 2 a day with perfect composition. now this is a definatate switch
acting on my brain caused by the diarhea. if i could get rid of this
diarrhea with the help of the HPI i could well cure the secondary
symptoms that are ruining my life. possibly im not saying for sure. i
hope it works.
the brain problems im experiencing only when diarrhea is present
could come to an end if HPI corrects this diarrhea im suffering. if it
doesnt work i can at least enjoy the absents of my IBS symtoms. im
going to try it out anyway i need answers to this problem of mine.
if anyone else experience's something simular i would really like to
hear from you.
my questions about digestion and stool was. why not allow the HPI to
go through the entire digestive track instead of just injecting it in
the bowel. it eventualy works its way down to the bowel anyway. dr
borody does do it that way too. do you get what im saying,
also im not sure what i have i remember my doctor saying after my
colonoscopy that i had visibly signs of a past inflamation at the very
end of my large bowel. that was after 6 months of meat and eggs diet.
what ever it was the diet had cured alot of problems but i hate eating
so restricted.
superman
mind.
Scandinavian
UC and IBS are two different animals. As I understand HPI is done a
lot for IBS as well. If I thought HPI was waste of time I would not be
writing here. Going ahead with HPI is one's personal decision based on
the believe that it will cure you = the law of attraction. I am not
recommending HPI or any other treatment to any one, I just want to
read other's experiences, success rates and share mine. I believe that
e.g., UC is just a symptom/outcome of something and not the actual
disease and that something can be different for different people even
doe they have the same symptoms called UC. What might work for someone
may not work for others, we know this based on the use of UC
medications, many people manage very well just with Asacol, many
other's do not. What pisses me off is that all UC patients are treated
the same way as if on an industrial line. UC treatment is individual,
trial and error, need to focus and treat the possible causes and not
just symptoms of UC. I believe HPI is one way to treat directly a
possible cause of UC that is why it might represent a cure. I have not
seen any other treatment focusing on the possible cause, has any one?
superman
you mentioned in a blog that you
experimented with baby fecal transfusions with no success and you also
said it wont work the feces is immature. how do you know this can i
see your source. i think your right babies have a diferent composition
of flora than an adult. can i ask also how many times did you try it
please explain as much info about your experience with it as you can i
would like to hear of your experience. please tell.
superman
What is Fecal Colon Flora Replacement, What is Fecal Enema?
To do fecal enema, you need a fresh feces from a very healthy person.
To avoid getting any unwanted parasites or any other disease, you
choose a feces from a very healthy, unvaccinated, breastfed baby.
You find anyone who has a 3 - 18 months old breastfed baby. You take
diapers with fresh feces. Color of feces must be yellow, it must not
be green, cause green color of feces indicates lack of good bowel
bacteria. (Unless child was drinking freshly pressed wheat grass
juice, or some other food of strong green color, green color of feces
always indicates lack of good bowel bacteria. Yellow (or yellow-brown
if child has eaten meat) color indicates healthy feces.) You need
fresh feces (not older then 12 hours). You can refrigerate diapers
with fresh feces, and use it the next day, but the best is if you can
get a hold of fresh diapers.
You mix fresh feces with enema water (you can also filter it before
use, of baby has eaten other foods then mother milk.) You use that
water as the last enema water, when doing enema. Once you get that
water inside of you, you try to keep it there as long as possible.
That is all. You will introduce widest possible range of good
bacteria into the colon, and it will cure inflammatory bowel disease.
If it doesn't work with one baby, try to find another one. One will
work!
Burke Porter
on Wikipedia regarding gut flora. Feces from a young infant is highly
contaminated, and the bacteria is not fully colonized until about the
2nd year of life:
btw...I'm began my first full week of HPI at the CDD Sydney today.
The gastrointestinal tract of a normal fetus is sterile. During birth
and rapidly thereafter, bacteria from the mother and the surrounding
environment colonize the infant gut. Immediately after vaginal
delivery, babies have bacterial strains in the upper gastrointestinal
tract derived from the mothers' feces.[12] Infants born by caesarean
section may also be exposed to their mothers' microflora, but the main
exposure is from the surroundings.[13] After birth, environmental,
oral and cutaneous bacteria are readily transferred from the mother to
the infant through suckling, kissing, and caressing. All infants are
initially colonized by large numbers of E. coli and streptococci.
Within a few days, bacterial numbers reach 108 - 1010 /g
feces.[13][14] During the first week of life, these bacteria create a
reducing environment favorable for the subsequent bacterial succession
of strict anaerobic species mainly belonging to the genera
Bifidobacterium, Bacteroides, Clostridium, and
Ruminococcus.[15]Breast-fed babies become dominated by bifidobacteria,
possibly due to the contents of bifidobacterial growth factors in
breast milk.[16] In contrast, the microflora of formula-fed infants is
more diverse with high numbers of Enterobacteriaceae, enterococci,
bifidobacteria, Bacteroides, and clostridia.[17][18] After the
introduction of solid food and weaning, the microflora of breast-fed
infants becomes similar to that of formula-fed infants. By the second
year of life the fecal microflora resembles that of adults.
StarChild
> btw...I'm began my first full week of HPI at the CDD Sydney today.
That's great news! So the doctors decided to go ahead with it despite
the pseudopolyposis? Keep us posted!
Burke Porter
the risk of infection by anything entering the blood stream through
ulcerations was no longer a concern. Thus, the doctor gave the go
ahead for the HPI.
I guess the pseudopolyps are basically recovering nodular
inflammation, so that area will hopefully take care of itself as the
colon heals throughout the treatment and into the future.
First day of normal infusions today. Things have definitely improved
since I first came down here, but it's hard to say exactly what that
can be attributed to yet because my meds and amounts have moved around
a bit also. Basically my responsibility at this point is to eat
properly in order to feed the new bacteria as they colonize into a
healthy flora and also avoid food that might be contaminated or
contain bacteria that the new implanted bacteria might be too "young"
to fight off.
StarChild
you continued doing those video blogs though, and perhaps film a bit
of the clinic as well... I would personally love to see what Ms.
Sharyn Leis looks like, just to connect the face with the voice :)
On May 29, 10:30 am, "Burke Porter" <burke.por...@gmail.com> wrote:
> We were able to get the inflammation under control within a week so
> the risk of infection by anything entering the blood stream through
> ulcerations was no longer a concern. Thus, the doctor gave the go
> ahead for the HPI.
>
> I guess the pseudopolyps are basically recovering nodular
> inflammation, so that area will hopefully take care of itself as the
> colon heals throughout the treatment and into the future.
>
> First day of normal infusions today. Things have definitely improved
> since I first came down here, but it's hard to say exactly what that
> can be attributed to yet because my meds and amounts have moved around
> a bit also. Basically my responsibility at this point is to eat
> properly in order to feed the new bacteria as they colonize into a
> healthy flora and also avoid food that might be contaminated or
> contain bacteria that the new implanted bacteria might be too "young"
> to fight off.
>
Burke Porter
but then I didn't feel comfortable with asking. I can tell you,
though, that it's a two story building. The main office is on the 2nd
floor and there is a main lobby area with offices, etc., further back.
Then beyond the offices, it basically transforms into a hospital-like
area. It actually felt like they had built a small hospital with
everything including recovery rooms, procedure rooms, and all. This
is the area where scoping and complex procedures take place.
The Probiotic Research Center is downstairs, and although there is an
elevator that connects the two which people and patients travel in,
the main entrance is in the rear of the building. It has its own
small lobby/waiting area, and just beyond that there are multiple
patient rooms with the inclined beds where they do the infusions.
There is also a lab area, patient bathrooms, etc. Then beyond that is
the office area where the staff is working and that is where the
elevator is that connects the two floors.
The Center is very modern and in a nice building. The second floor
was always fairly busy with patients of various ages, but there was
never a significant waiting time or anything like that, and like I
said, it felt like being in a nice, small hospital. The Probiotic
Research Center downstairs had a much more private and quite sense to
it. The procedure nurses and Sharyn have amazing bed-side manners,
and do an excellent job of answering questions and creating the right
environment for the procedures. They're very professional and seemed
even more personable after meeting face to face.
superman
look unhealthy to begin with? i usually have IBS diarrhea predominate
really dont know what a person with crohns experiences. cant imagine
it would be plesant, one guy described 27 bowel movments in one day
that would ruin your life i imagine.
Scandinavian
I have heard that probably the only hospital in Europe that has a
donor bank for HPI is in Norway the Haukeland Hospital.
What is in HPI that doctors do not want to use and help their
patients?
StarChild
not very safe - if the donor is not properly monitored for a variety
of infectious diseases the patient can very easily get infected as
well - we're talking HIV, hepatitis, etc. here, so it's really no
joke. Secondly, there's the unfortunate lack of data on benefits of
probiotics in larger scale studies, and since this is in a way an
extension of probiotic research it's no wonder doctors who are not
familiar with the procedure are somewhat reluctant to consider it as a
viable alternative. And then there's the good 'ol ignorance and lack
of interest. One thing UC and CD patients must realize is that these
diseases are very rare. In a typical situation only about 2% of
patients any "general practice" GI doctor has are UC or CD patients.
So they really don't know that much about every alternative treatment
out there. Then there are those who are very specialized in a certain
field, like IBD, but they're often too focused on their own research
and generally have low opinions on these alternatives. I just think we
should be grateful there is someone like Dr. Borody and his team out
there who really understands that better immunosuppression agents are
not the long term solution and is not afraid to explore "unorthodox"
methods. After all, this is the guy that invented the first triple
therapy for Helicobacter Pylori, he certainly knows his share about
"unorthodox methods", and look at how that turned out :)
Burke Porter
said it mostly came down to the "yuck" factor. I'm not sure if that
meant hospitals and clinics not wanting to deal with the materials or
if they were reluctant to try and explain it to patients.
She did say that in the past they had tried to introduce it, but the
response just wasn't there. It doesn't make sense to keep pushing on
ears that don't want to listen, I guess. However, she did tell of
some of these clinics contacting them later on during "emergency"
situations, and they were able to help out.
Brief update on my situation, there seems to be improvement, not as
immediate as others. But remember, I'm waiting for quite active
distal colitis to settle down. So the new bacteria could be settling
in and colonizing further up, but I won't really have a clear picture
of things until the distal colitis settles down and I'm able to see
what happens when I try and taper off medication.
Scandinavian
How is the treatment going? feeling better?
regards
Burke Porter
Scandinavian
Are you still in Sydney? It seems a rational decision to heal the
colon completele before more HPI even doe in the articles of Dr.Borody
he had a case of severe UC in addition to the guy having other
infections as well and the case study claimed he remains in complete
remission over 13 years after only 5 course of HPI.
Here is an example of how doctors are ridiculed for HPI and why
clinical studies can be difficult. If there is a clear opposition to
the treatment method then not many doctors would step forward and
start trying it.
superman
air fairs
Burke Porter
that to the Center as it is not my information to distribute.
They have a fee schedule that they sent out to me at the time of my
initial consultation.
superman
it triggered by some factor like antibiotics. was there anything that
contributed or did you just one day wake up and you had it. is there a
way to avoid getting it? please man answer this. i hope you liked your
stay in australia.
Burke Porter
sure which one to suspect. I did use Accutane, once in high school
and then once in college a couple of years before my symptoms began,
but who knows for sure what might have caused my situation. Accutane
is often suspected of leading to many things including abnormal
digestive conditions.
I don't think anyone really feels comfortable with saying there is a
way to avoid getting UC. My advice is just live as healthy a life as
possible, have a healthy diet, and be suspect of anything unnatural
going into your body.
Scandinavian
Have you noticed some significant changes post HPI?
best regards
bporter
extreme urgency, and it got me worried. Then the next day everything
was completely cleared up, and I only had one bm that day. I've had
one or two bm/day since that. I'm not sure if I just ate something
which set things off on that one day or what. I was ready to throw in
the towel and declare my results as unsuccessful, then, like I said,
things got really good.
It seems like it's been like that for me since HPI: two steps forward,
one step back. Hopefully things keep going forward with less steps
back.
Also, at the time of HPI, I was taking 20mg Prednisone, 100mg Imuran,
9000mg Pentasa, and occasionally using Colifoam.
I'm down now to 5mg Prednisone and the Pentasa, sometimes using Colifoam.
I stopped taking the Imuran because I've never felt really good on it.
It was against my doctor's advice as he would like me to continue
taking it until I'm completely off Prednisone, then begin tapering off
of it. But, I never truly noticed results from it, and I've taken it
for longer than 6 months (the time period that I've heard you should
see results from it).
I think my body is going to through a big adjustment each time I taper
down a bit on the Prednisone. Although I'm taking a small dosage, and
have never really taken a very large dosage, I've always been pretty
steroid dependent, having symptoms return whenever I've tried to taper
off completely in the past.
Anyways, I'll wait until I'm able to get my meds down even more and
have some kind of stable situation going on before I feel comfortable
judging how well the HPI has worked or not. But I can't really say the
results have been negative. Guess I'm just cautious about saying
they're positive.
Scandinavian
after the HPI you might have some ups and downs because of the new
bacteria.
I think you have done wisely to stop the Imuran. I find the use of
immunosuppressants as the least doubtful for UC and have rejected my
doctor's suggestions to try it out. If it has not helped you within 6
months then it is clear it is not going to work.
regards,
StarChild
> have some kind of stable situation going on before I feel comfortable
> judging how well the HPI has worked or not. But I can't really say the
> results have been negative. Guess I'm just cautious about saying
> they're positive.
Understandable, but it sounds like those bacteria are doing something
right... Even getting off meds completely would be a huge achievement,
especially since you're steroid dependent. You said it best - "two
steps forward, one step back". If just one treatment did that, imagine
what a few more could do... I think it's naive to think only 10
infusions have the potential to cure. Sure, it could happen, but it's
not very likely. I think the longer your disease the more infusions
you need. Those bad bugs need to be beaten into submission because
they have a head start. Diet promoting "good" bacteria is also
important, you have to keep at it as long as possible, because you
want to give those bugs the best chance of competing in the hostile
flora that your bowel has become. I think people often forget that
every action we make to beat the disease, every meal we eat - matters.
If you truly want to beat this disease you have to give it your best
shot. That's how people get cured - by sheer power of will.
Scandinavian
I concur with you on the assumption that 10 infusions may not be
enough (clearly there are differences between UC subjects; for some it
might do the job). My individual experience with HPI was that I
achieved an excellent long time remission with 10 infusions and
expected that to be the end of it. Well planned and continues HPI
infusions e.g., start with 10 (incl. antibiotics prep) then 5
infusions each 5 - 6 months for several years depending on the form of
the UC. For distal colitis if one can maintain clinical and confirmed
histological remission even by current medical standards can be
perceived to be at low risk to get UC again (the doctors here talk of
discontinuing medical therapy but do not actually say "cured").
What do you mean diet for good bacteria? you refer to high fibre,
soluble fire, commercial probiotic/prebiotic products?
regards,
Jack
Just to let you know what my findings are, the right diet truly works, there is no magical diet for each person, you have to find by trial and error.
I put it twice in a long term remission with a strict diet and at the same time injecting pure Vitamin E in my bowels just like you would do with HPI.
My new plan now is to combine all these three things together. HPI, Diet and Vitamin E.
The natural Vitamin E is a true infection killer but you have to be strict for at least 2 weeks.
Next week I will start with a test for 2 days to see the reaction.
Last time when I did HPI at home the Australian way for 12 days.
After the first 2 days I already felt great but after 2 years it slowly came back. Now I control it, for the moment, with a elimination diet without any medication to not let it get worse.
I also felt in those 2 years that it never completly went away.
"Managing IBD symptoms is challenging, but sustaining remission is also quite difficult. A 1991-93 multicenter British study compared the results of steroids to an elimination diet on remission qualities. After the two-year study on 136 patients, researchers observed a significant difference in improvement and length of remission with diet vs. steroid therapy.32 However, other studies do not reach the same conclusions.33 It does appear possible, through trial and error, to establish diets on which individual patients achieve long-term remission. However, there is no universal diet that will help all patients with IBD.34
IBD is a serious, chronic, perplexing health disorder. As with so many chronic diseases, it is the combination of genetics and environment -- the persistent stimulus in an individual who has a genetic predisposition to this disease -- that determines the outcome. For alternative or adjuvant strategies in managing IBD, health care practitioners and patients should work with the nutritional tools of probiotics and elimination diets"
http://www.newhope.com/nutritionsciencenews/NSN_backs/Dec_00/colitis.cfm?path=ex
Scandinavian
Regarding the stopping of medication intake, why do you need to stop
taking the daily 5ASA dose?
StarChild
> soluble fire, commercial probiotic/prebiotic products?
Well here's what I think - if we assume that UC is caused by some kind
of hostile bacteria or fungus that is overwhelming the normal gut
flora, but can't be readily isolated and identified as a cause (since
there are over 500 types of bacteria living in the normal gut), then
we can assume that this bacteria or fungus is competing with the
"good" bacteria for food and "living space". We know that high sugar/
carbohydrate diets promote fungal and bacterial overgrowth, but these
"good bacteria" we call probiotics thrive on completely different
types of food - fiber found in green vegetables and whole grains,
inulin and other "prebiotics". To clarify - prebiotics are foods that
we can eat to promote growth of probiotics. It's two parts of an
equation. Also, some "good" bacteria thrive on insoluble fiber (fiber
we can't digest) like psyllium husks. Now, if you look at the HPI
protocol drafted by Dr. Borody and his team you will see that pre-HPI
they try to starve and eliminate "bad" bacteria and fungus, during and
post-HPI they try to promote probiotic growth through fiber high diet.
Now, let me say this loud and clear - sugar is evil. You don't need
refined sugar in your diet, no more than you need a hole in your
stomach. It's just not a part of natural human diet. Consider this -
for millions of years humans ate exclusively what they could hunt,
gather, or grow. Sugar (apart from that found in fruits, some
vegetables, and occasional taste of honey) was never a part of their
diet. The relationship between humans and their gut flora is a
symbiotic one, they can't live without each other. Therefore, the gut
flora adapted to the way humans lived, and humans adapted to their gut
flora, and in ideal circumstances they live in perfect harmony. We all
get our first gut bacteria from our mothers, and they get it from
their mothers and so on and so on into prehistory. In fact, we know
there are certain types of bacteria living in our gut that live
nowhere else, they are so adapted to their human environment. We need
to treat this relationship with respect and care. But we don't. We eat
junk food, we eat way, way more sweet foods than necessary or wise,
but we eat too little of those good foods we ate throughout our
evolution. And then we wonder why our guts are not working as they're
supposed to. Yes, I know what you're thinking - how come babies also
get IBD right? Well, as I said, we all inherit our gut flora from our
mothers, and the bad eating habits don't necessarily manifest on the
first generation. Researchers know that there has to be some kind of
genetic predisposition for getting IBD and well, the mother doesn't
have to have it, but the baby might - and bam! two parts of the
equation meet and bad things happen.
Eating right and curing IBD is a long term commitment and HPI is just
a piece of the puzzle. Ideally the healing process should look
something like this - start eating right, today! I suggest you Google
"anti-fungal diet" (which is more strict on carbohydrates than SCD
diet) because that's a good way to begin eliminating those things from
our diet we don't even realize promote our disease. That's your
starting point. When you start feeling better, and you will, then it's
time for phase two - antibiotics, per Dr. Borody's protocol. Ideally
you should do a few courses before going to the third step - HPI. This
step is obviously crucial because until now you've only been trying to
weaken the "bad" bacteria and fungus, but without HPI it won't work -
as soon as you stop dieting the disease will come back. Since we are
no longer able to recover the good flora through our own "resources"
we need an infusion or fifty that will overwhelm that bad bacteria.
Hit them with everything! Now you may wonder how that can possibly
work? Simple - bacteria and fungus compete for resources, only the
strong survive. This is easily observable in laboratory conditions but
much harder in vivo (a living organism). But we know it happens, and
that's why HPI works. The good bacteria compete away the bad bacteria
and fungus and repopulate the gut with billions of copies of
themselves. You might think that's where it ends but it's not.
Bacteria and fungus can enter a state of complete inactivity known as
spores. These spores are like eggs, waiting to be hatched when the
conditions are right. So while this method may kill the current
generation of bad bacteria - the next is already waiting to be born
when the conditions are right. And I'm sorry to say but some spores
have a life cycle longer than that of a human being. But some have
very short life cycles, and if we're very lucky we can eradicate them
completely when they resurface. That's why it's important to keep at
it - the diet, the HPI, the probiotics and everything else LONG after
all your symptoms are gone. The symptoms may be gone but the cause may
still be there, and until it's completely eradicated (if ever) you're
not completely cured.
Also, if you're wondering why UC manifests like it does, and why
everyone keeps calling it auto-immune disease: we call it auto-immune
because it seems as though our bowels are being attacked by our own
immune system for no reason whatsoever which leads to ulcerations,
bleeding, and all those other symptoms. But it's entirely possible
it's really a reaction to a hostile organism that we just haven't
identified yet. If you assume that then everything clicks into place.
The immune system is not malfunctioning - it's functioning perfectly -
fighting with all it's got to keep those bacteria at bay. Sometimes it
wins, but it's only for a short while because it doesn't have the
capacity to destroy them completely. We call that a remission. But the
bad bugs always return, and the cycle begins again. It's interesting
that some people have 1 year cycles, some have 2 year cycles, some
have 10 year cycles. But no matter how long the remission the disease
always comes back. Coincidence? I think not.
To bring this rant to a close - you have to decide, right now, if this
is something worth fighting for. It is entirely possible that since
you're genetically predisposed (which has been demonstrated, you have
the disease) you'll have to avoid refined sugar in your diet
indefinitely and use high fiber diet as long as you live. But the
trade off is you never have to experience the symptoms again - which
would you choose?
Scandinavian
Quite the post size ;)
Two quick points:
1) The diet from the CDD for pre-HPI has nothing to do with starving
any "evil" bacteria or fungus, but it simply states to avoid high
fibre diet 2 weeks before beginning the antibiotics and during the
course of the antibiotics treatment (to weaken the existing gut flora
in addition to the antibiotics). High fibre diet is initiated once HPI
treatment starts and there after to feed the new bacteria and help it
gain grown vs. old flora.
2) The sugar theory is very nice and it is beneficial for any person
healthy or with gut issues to eat in a balanced way and avoid junk
food and access sugar. No need to suffer from UC to have bowel
problems due to fungus, sugar and added preservatives. There are other
similar theories such as the increased use of refrigerators, regular
brushing of teath, to good hygiene and etc. anb etc. Bottom line,
refrigerators, good hygine and moderate use of sugar can be also good
for you, we can't continue to live in the stone age and hunt raw meat
like monkeys.
I personally have never been a friend of junk food or sugar products,
in fact have always abided with a well balanced diet and exercise. As
far as the sugar and refine food theory is concerned I do not think I
fall under the subject group for whom this could be the trigger for
UC. As far as the genetic predisposition is concerned I was born in
Southern-Europe and belong to such a gene pool for which UC is NON-
EXISTENT, in the country of my birth gastroenterologists know UC from
books and many have not actually seen a case personally.
BTW fungal and bacterial overgrowth can be detected and as such is not
a mystery for the physicians. All my tests for "known problem-makers"
are negative and I bet so are the results of most UC patients. Also
psyllium husks is actually soluble dietary fibre and not as you point
out "insoluble fiber".
It is certain that keeping some kind restricted individual diet helps
people with their symptoms especially if they have an UC flare. In
these cases the rule of exclusion could be useful, however once in
remission a balanced and healthy died with all elements is
recommended. A man is on top of the food chain and such should eat
accordingly, if you start excluding variety of elements for prolonged
times you only make your gut more sensitive and 100% guarantee that
you will have problems if you go astray from any long time restricted
eating habits. You want to make your gut weaker? the whole purpose of
the HPI is to increase healthy bacterial variety and eating all that a
human is intended to eat supports this theory. I am not aware for the
CDD to give any advice on restricted diets post-HPI has any one?
My point being that diet is not the cause or the solution for UC, it
might ease symptoms = yes, but so does the cortisone.
I put my money on the pathogen being a bacteria, most probably some
thing one might contract from the soil. Pathogen bacteria are known to
go sc. "under" meaning have periods of activity and inactivity in
addition to releasing spores. If you don't know what you are looking
for you can't find it and no known test will ever show a positive
results (clostridia is one known type). Once the pathogen bacterium is
active it disrupts communication between the gut flora and the T-cells
resulting in incorrect regulation of NF- B and BINGO the so called
white cells attack your gut flora causing ulcers. Here is where the
vicious circle starts (you have the bad guys proinflamatory and
immunoregulatory cytokine such as IL12, TNF- , IL-6 and others, but
who do you target? you can't target all...then there are the good guys
anti-inflamatory IL-4, IL-10, and IL-13 whom do you support? = this is
what current researchers are battling), since faeces are full of
bacteria your damaged gut flora can't recover what ever you eat...each
time your colon processes the food the gut flora takes a beating. By
eating food creating less waste one can reduce symptoms but cannot
actually get cured unless the inflammation is targeted either with
5ASA or cortisone. HPI is effective only once the gut has been treated
for the inflammation and remission has been achieved, otherwise the
new bacteria have very poor chances to take permanent hold on inflamed
mucus layer. Commercial probiotics such as VSL#3 is used to modulate
the surface of the feaces and reduce harmful bacteria in the gut and
hope the ulcers will be aggrevated less. Once remission is achieved
the regular intake of probiotics helps maintain this homeostasis for a
longer time...until the bastard pathogen baceria wakes up and starts
gaining ground again.
Not everyone calls UC autoimmune disease, in fact the scientific
community is still debating this, immunosuppressants are used since
these target T cells and as such the inflammation process. The
question; is the culprit one's own immune system is still unanswered.
It is very possible that the immune system works in a correct way
attacking something we cannot detect.
So friends it is good to look out what we eat, but our fight is 2
fould: 1) stop the inflamation 2) totally eliminate the old flora and
repopulate....3)top-up, top-up ;) dont do the mistake I did....Some
friends have stopped 5ASA medication after HPI, I am not certain is
that necessary?
StarChild
Quite a long reply too :)
Maybe my point was lost in the long rant. What I wanted to say is
this:
Diet promoting probiotic growth + antibiotics targeting MAP and
similar bacteria before HPI + HPI, HPI, HPI = Likely cure for UC.
Inflammation is just a symptom you have to get under control before,
although I'm sure it would work regardless. It's usually not done when
inflammation is present because there's a real risk of sepsis.
Excessive sugar intake - bad. It probably doesn't cause UC but it
could trigger relapses due to fungal overgrowth (which isn't always
tested for and can be hard to detect even when it is)
Research has shown that there is no racial bias with UC, people of all
races get it, but why is it that it occurs rarely or never in
developing countries, but frequently in developed? It must be
something cultural, something we're doing, something that is VERY
close to us. And mind you, it's not only people in densely populated,
industrialized areas, but people living in suburban and rural
environments as well who get it... My guess is it must be something
we're eating because you're in contact with food every single day, all
day, all your life. We just don't eat the way our parents and
grandparents ate. It has all changed radically. Remember the DDT
fiasco? At the time the FDA claimed it was perfectly harmless. My
point is - we're putting so much garbage into ourselves, it's no
wonder something's gotta give. We trust institutions like FDA to
research and prove things we put in our bodies are safe but men make
mistakes. Men are corruptible. We use so many chemicals that have not
been sufficiently tested it could be any one of them that's causing
this thing. Sugar is just one possibility...
Btw, what I meant about psyllium husks is - it's soluble but not
digestible. Certain probiotic bacteria love the stuff though :)
I agree we shouldn't eat like we're living in caves, but we should not
stray too much either. You can't deny 2 million years of evolution.
IMHO - unrefined foods are the way to go. It doesn't have to limit
your diet options in the slightest.
CDD doesn't advise on long term diet, but I think it's implied. You
just can't pummel your digestive system with crap food and expect
you'll get healthier.
And now we come to the paradox - if it's not an auto-immune disease
why are we preventing our immune system from defending itself. Sure,
there are times when you need to do it because the alternative is
death, but what's the point of long term immunosuppresive therapy? If
we're dealing with a pathogen here all you're doing is helping it get
more entrenched. And you still feel like s*** all the time.
Regarding 5-ASA - did you know these drugs have a mild antibiotic
effect? So maybe it's really not their anti-inflammatory effect that's
doing the trick? Besides, long term 5-ASA use is also dangerous
because it's the same as all other acetylsalicylic acid based drugs -
it promotes bleeding, peptic ulcers, slows healing, etc...
Scandinavian
http://en.wikipedia.org/wiki/Superantigen
bacterial superantigens, find which bacteria and you find what cures
UC. The other question is; does the pharmaceutical industry want to
cure or create and patent medication that you need to constantly buy.
How many researches are not sponsored by the pharmaceutical industry?
let's just say the cure is an old vaccine, antibiotic or a fellow
man's feaces...can you put a patent on that? why is it worth
researching if the industry cant make a buck. The days of old fashion
doctors who went the extra mile to medicate a patient are over, today
the industry guides what doctors do and prescribe. My sister and
gilrfriend are both M.D.s, the main tasks of pharmaceutical sales reps
is to wine and dine doctors and push their products with an arrogance
without precedent, medical staff are issued bonuses based on the price
and product they presecribe...how many M.Ds would have the time to
talk about HPI and how many actually really care if it works.
StarChild
drug research is big business. We're talking literally trillions of
dollars. And while those pharmaceutical companies do seem to have a
motive to produce "treatments" instead of "cures" thankfully doctors
have other prerogatives. But research costs money. And that money is
provided by - you guessed it - pharmaceutical companies who then cash
in on exclusive patent rights. Every year hundreds of research
projects are shut down because they are not commercially viable. They
can't make money off them!
True, some are picked up by government grants and independent donors,
but that's just not enough. Who knows how many diseases could have
been cured by today if the rules of the game were different. But no
matter, in the end, good ideas do make it in spite of the odds against
them. I believe HPI is one such good idea. It may prove to be less
than a cure, but it's a major step in the right direction. The really
sad thing is we, the patients, need to be our own doctors and
researchers. That's why you never hear your family doctor talking
about HPI. It just doesn't compute, it's not a part of the "official
medicine" which is dominated by corporation sponsored research,
publications, lobbyists, etc. And well, let's face it - UC is not
exactly high on the priority list....
Scandinavian
the list and if anyone has been diagnosed with any of the below?:
Mycobacterium avium paratuberculosis (MAP)
Fusobacterium varium
Escherichia coli
Staphylococcus aureus (bacterial superantigens)
Streptococcus pyogenes (bacterial superantigens)
Clostridium difficile (and other clostridium subspecies)
Cytomegalovirus
High level of hydrogen sulphide in the intestine (high levels of
sulfate-reducing bacteria)
superman
practitioner. interesting i thnk and we are probably already aware of
it anyway. its not the greatest site i admit but this was worth a
look.
Thirty Years of Experience and Excellence
I have much to celebrate this month and this year. It was 30 years ago
in July of 1977 that I began to practice colon hydrotherapy in Miami,
Florida. This December it will be 20 years of practice in Tucson,
Arizona. I thank all of you who have become clients and have taken
such good intestinal care of yourselves.
When I began practicing, I never saw conditions such as Chronic
Fatigue and Multiple Chemical Sensitivity. Candida was not even
mentioned. The types of conditions that I see now are much more
serious and complicated than 15 to 30 years ago. Even in the last few
years, the incidence of Inflammatory Bowel Disease and Malabsorption
Syndrome has increased extraordinarily.
superman
with antibiotics?
Researchers have linked Hashimoto's thyroid disease
(under active thyroid) to a type of food-poisoning.
Yersinia enterocolitica is a bacteria found in livestock
manure. It can infect humans who consume food that
was exposed to sewage-contaminated water, such as
meat, poultry and oysters. Initial symptoms of infection
include right-sided abdominal pain, as well as joint pain
and rashes. In susceptible individuals, such an infection
may be the trigger for autoimmune thyroid disease.
Women with Hashimoto's disease were 14x more likely
to have antibodies to Yersinia than the rest of the
population. (1)
Patients with Hashimoto's should have a stool test for
Yersinia. If the bacteria is present, it may be treated with
antibiotics or herbal antimicrobials such as Goldenseal.
By treating the cause in this way, some thyroid function
may be recovered.
Stool tests for Yersinia are available from Sensible-
Alternative Clinic.
superman
British scientists have discovered that a bacteria
found in soil stimulates the release of serotonin in
the brain. (Serotonin is the happy chemical in the
brain that is targeted by anti-depressant drugs.)
(1) This finding may relate to other research that
has shown that cells in the immune system
respond to and also release serotonin. The
bacteria, called Mycobacterium vaccae is part of
the natural flora in our body. Scientists advise
that staying too clean may have a negative effect
on mood.
Comment: This is timely news, because
antidepressant use is growing by nearly 5% per
year in Australia. 12.3 million prescriptions were
issued last year alone. (2) Time to get back into
garden!
superman
when they test your stool before and after HPI do they tell you what
your bacterial composition is or was. im worried if they find mine to
look not to bad they will call it off. i dont wanna miss out i know
this will help me.
im booked in to do it in october that nurse chick is going on leave
so i got to sit around till she gets back. plus i ask them to do it
from the top as well as an enema. just to hit the entire digestive
track hard not just the large bowel, i want double the power i dont
care the extra cash i got to hit this hard its my life on the line.
please someone answer me.
superman
of stools before and after. do they comment on it. do you get any
report or do you think they would back out if it looks normal. im a
little stressed i really dont want to be rejected from these guys even
if they have accepted for now sorry for repeating myself if i have or
do. that sharon lady told me they have a 70% success rate for people
with my condition (chronic fatigue syndrome). im hoping HPI through
the top would increase those odds as alot of my problems are in the
small intestine, she said they rarely do it that way because of the
problems associated with it.
Carl
any are found, as in my case, they must be eradicated with antibiotics
before the treatment can be considered. There was no 'composition'
test, and no stool testing after the treatment. The main reason they
would not proceed is if they found that your bowel is too inflamed
during the colonoscopy on the first day. I don't know of any
treatment 'from the top', other than having the enema released through
the colonoscope into the top of the bowel during the first day's
examination.
superman
i would apreciate it very much. when i was with sharon discussing the
procedure she never mention hitting the small intestine at all. i had
to ask for it at the end and she replied thats very rare but they did
offer it if i was interested. it cost extra. its not easy to do you
need to keep a nasal tube all the way down to you gut for the two week
procedure, thats going to be hard. i am well aware my small intestine
is causing a large percentage of my problems as thats where all the
sharp pains are coming from. although if i had crohns or UC like some
of you i think i would go for it anyway. thats just my preference im
trying to maximise my odds here my condition is very serious. correct
me if im wrong because im guessing the length of the digestive track
is about 40 foot or 8 meters or something like that. the large bowel
is only a fraction of its length. why wouldnt you hit the entire tube
hard instead of just a fraction. is the small intestine not important?
is the bulk of the bacteria in the large bowel? beside that it just
makes sense to hit the entire track so there is more new bacteria to
fight.
Scandinavian
To continue my above list with some thíng called: Campylobacter
colitis, which is claimed to be often confused with Ulcerative Colitis
since no clinical or histoligical difference can be seen. How lucky
one could get if it is in fact Camplylo bacteria that is the cause of
your colitis...at least this is curable.
Carl
only. The small intestine is healthy, hence no need for the HPI there.
superman
nice to see you recover it would give me more hope. i dont mean to
sound selfish there honestly. wheres Bporter has he recovered yet i
would like to know about him too. it would be nice to see the people
who have recovered. so far there is only one thats confirmed a
recovery that guy with his own webstie. eating ice cream and stuff. it
helps alot when you can witness it than just rely on people saying it.
if there is anyone out there that has recovered please post and give
us or at least me hope. i cant live with this disease much longer it
has changed my life, one that it isnt worth living.
Jack
There is no one stop sollution for this horrible thing for everyone for some HPI works for minimum 13 years or so without any problem
for others, like me, it worked for let's say 80% in the beginning first 1,5 years after first treatment.
But overall I have a better life although now I am carefull with what I eat, like Carl my life is still much better than ever before HPI.
I did HPI at home so maybe not the perfect way but it helped.
I am also experimenting with other things, like injecting pure Vitamine E in my backside ;-) it also helps and it brought me into remission as well.
So for me it takes strength and believe that I will overcome it with all I am doing or at least have a liveable life.
It also brought me awareness of the disease as I dont use any medicines. I choose that way as I seem to start to know more than any of the doctors that helped me, so I help myself.
Experimenting experimenting that is my life, difficult yes very, it takes away another life that I want to have but hey what else can I do.
I am so damn focussed on this thing that at certain times I want to cry and give up but I never did, in the end I will try more and more.
Regards,
Jack
superman
did you follow a good diet after your infusion or do you
eat anything you liked? did you drink alcohol? were you dieting before
the hpi? how many times did you do the infusion and did you clean out
your gut before the infusion, considering you did it on your own.
Jack
I followed as told in the HPI home version a high fiber diet but that means that u can eat almost anything with it.
But soon after I started to eat anything I liked. The stool form did not change much it was mostly formed for 1,5 years.
I did drink alcohol and I still do as I tested it with and without it for a long time and never saw much difference in stool form.
I judge the form of the stool as a indicator these days and it really works. After that I add some different foods and see what it does.
But I also do a kind of Vitamine E enema at the same time after my bowel movement.
Vitamine E truly works as a infection killer.
I also did the low fibre diet before the HPI.
I did the infusion for 10 days the first time, actually I did the whole official ride.
I cleaned out my gut completly and I also took the Antibiotics 7 days prior to the infusion.
The first 3 days that I started with the antibiotics I already had better stool and 4 days after the infusion I had no blood and formed stools for the first time in 8 years.
superman
thats very interesting it actually worked for you then.
thanks for responding. are you going to try it again soon? the world
would be a better place if HPI was made into a capsule. wouldnt you
agree. so much easier and i would always have a bottle in my fridge
just to top up when it was required. may be thats there goal at the
PRC ( probiotic research center), at my last apointment the doctor
told me after the treatment i should seriously consider eating a
responsible diet for life..perhapes even giving away the alcohol yet
when i spoke to sharon the nurse who is preping me she reckons i could
get drunk without any hassel. i think ill take the doctors advice and
practice looking after my self. as boring as that sounds. 10 more
weeks to go.
Carl
While I'm feeling pretty good I'm not planning to do HPI again at this
stage. see what the future brings. :-)
Jack
Do you still watch your food?
If you do and the moment you don't do you get a lot of troubles?
Carl
Yes, I still have to moderate the amount of carbohydrates I eat. I
don't get 'lot of troubles', just a bit of stomach grumbling, more
gas, some urgency, some frequency increase and softening of the bowel,
sometimes at the worst diarrhea. On reflection I'm probably getting
away with more these days.
:-)
Jack
Sounds exactly like my situation. I am better off after HPI but still on a 70% level I would say. With some worse days.
I am now on a Very High fiber diet, very difficult to keep the discipline but it truly works well while taking pure Vitamin E enema's.
I am just running a test for at least 2 months to see where it goes.
The goal is to slowly add new other "normal" foods one by one but not sooner than after 2 months.
Untill now I am doing well with one formed bowel movement a day.
Still some gas but no urgency at all.
;-)
Carl
What sort of foods do you eat for your high fibre?
Jack
I eat mostly cooked broccoli,carrot, parsnip, turnip, yellow squash ,mushrooms.Asparagus, UPPER part of stalk only, baked potato (Don't eat first skin or the second layer just the white part), cauliflower, cucumber, spinach, carrots.
Cook but don't over cook as it needs to have structure. Not fruit no fruitjuice and I eat brown rice. No red meat just fish and chicken. also slowly cooked in olive oil.
It is a trial and error thing, I started with almost nothing and add more untill I see bad stool form, the next time I take "bad food out and bingo next day it is normal again. I saw results within 4 days actually.
Of course what is interesting to find out is if after 3 months UC stays away if I add some "not so good" food.
There is, at least, some research from a doctor is south africa who's success rate, with this method is as good as with only HPI.
But it takes discipline and time as the bowel heals so slowly and even the moment everything seems to be normal I have to stick with the plan for the next 2 months.
superman
this is a question for you. do you have any idea how you got
UC. i was just curious if you had the time to share.