Going good
I've continued to be very well since my last post. Only had diarrhea once after a bit of naughty food over Christmas.
posted by Carl @ 12:04 PM
26 comments
HPI Treatment
A diary of my progress using the Human Probiotic Infusion (HPI) treatment to treat Ulcerative Colitis
Tuesday, February 06, 2007
Previous Posts
- Merry Christmas and Happy New Year
- Just a quick update. I've been pretty good, but...
- Disaster... followed by bliss
- I've been pretty good over the last couple of mont...
- Post treatment report
- Treatment finished
- Repeat treatment at the end of this month
- February update
- HAPPY NEW YEAR!
- Update
26 Comments:
Wow Thats fantastic.You deserve it!I am a patient of Dr Borody (IBS) and have not had that much success yet,but fingers crossed.good Luck!G.
Please continue to post your progress. I too have tried HPI and find that it works well, not great but well.
MD
Hi,
I have tried HPI for UC (conducted 10 sessions following the instructions). I remained in remission for over 1 year, now flaring again.
Once the situation is under control I need to reveiew HPI again maybe I will have better luck next time.
Take care!
i dont understand. HPI aparently has a high success rate and none of you appear to be cured. your still avoiding all sorts of food and having problems. whats going on does it cure or does it leave you to continue to mangae the disease?
could it be that the donar that gave you the stool had a stool that was'nt fully healthy. a test from bioscreens in melbourne can identify the bacteria profile may be you should have it done and report the findings. http://www.bioscreenmedical.com/
i have a bacteria profile thats very out from the norm. i wish CDD would use this test in there screening.
how much does HPI cost in total
Around 5800 Australian Dollars (4800 USD) for overseas customers, much less for Australians (a lot of tests and procedures are covered by insurance).
The documentation on HPI trials for UC is very limited and the reported results (as impressive as they seem) are case-based with limited control groups. I truly wish for more information on large controlled trials so this can be franchised to the rest of the world.
On the CDD website on can read of a 50%-50% chance to cure UC with HPI and I want to believe therefore I tried it (with good results) but a year on I am back where I started. I can’t escape the question did I do something wrong? I will do it again, since I have no other option the same way as all other unfortunate souls with this torturing condition.
I also find it preposterous that the current medical establishment cannot help us get well even doe we are in fact suffering only from an inflamed mucus layer and are other wise in perfect health most of us pretty young as well. In this day and age people get cured from cancer and all other kinds of terrible ordeals, but UC is simply forgotten, there has not been a medical advance since the 1940 when sulfa was discovered and after that they came up with the 5ASA spin-off…these are 40 year old drugs!!! (5ASA has been shown to work a little better than a placebo in clinical trials)…the rest of the medication currently used is not even indented for UC with terrible side effects. If the UC does not mess you up the cortisone, immunosuppressives and anti-TNF-Alpha will for sure do the job. There is a reason for people getting UC and the reason can be found if there is a will! Now it seems we are not important since perhaps we do not constitute a large enough market base for drug companies to profit from. I have been forced to become my own doctor since I have no other choice any one else with the same feeling?
Best to all
i feel the same i have chronic fatigue yet i know my diarrhea is playing a major role in it. the braing fog is terrible. its eases up when i restrict my diet to meats and eggs. may be the next time you try the HPI it might work better. if its got a 50 50 chance of success cant you just keep trying untill you get lucky. i do really think after all ive lernt that the bacteria are the cause and can be the cure.
please someone who has had success plaese raise your hand and tell us your story
Well this guy has apparently had great success, he claims he has been virtually cured by HPI... http://nexusofsteve.com/News/news_102204.html
Hi,
I am 80% better off after doing this HPI treatment 2 years ago now. For the moment it is good enough. I dont use any medicines for over 2 years. everyone who is suffering from this disease knows how 80% better off sounds, right?
It can be cured with HPI but you have to put a lot of effort in it, trial and error, I did it myself.
Maybe it is a great idea to set up a Forum/Board just for HPI. Again the solution for UC is in HPI
Hi momfer,
I agree that HPI seems the only logic solution to get rid of UC with the less/NO side effects. Can you explain what do you mean by 80% better off? Also you mentioned trial and error? How many times did you do HPI and any lessons learned? I hope to do my second HPI trial during the Autumn (the full 9 yeards) following the protocol. If anyone who has successfully done HPI has any advice how to maximise the effect pre and post HPI I would appreciate it!
Thank you in advance, also an HPI board is a good suggestion, we can share experiences and hopefully devise the ultimate HPI protocol ;)
were you following the diet before you did the HPI. maybe the diet is allowing you to remain off medications and not the HPI. just repeating again did you follow the same diet you are on now back when you were on medication. because if not HPI may not be whats improved you 80%.
everyone is anonymous here ;-(
I have to answer quickly (time is at this moment not on my side) to a couple of questions. Because I want the world to know and to hear/read about it.
Imagine if you could reach 50% better off in 5 days with HPI would u do it if you look to ur situation right now?
With 80% better off I meant coming from -200% with 27 visits a day to the toilet, with always pain, blood in stool even with huge amounts of medication etc etc to the situation now of No medication, no pain, no blood, 1 or 2 visits to the toilet, being able to go on a holiday by plane, etc etc and with no diet at all.
BUT there is a but: it was not something I reached at once it was trying more and with different stool of different people, it was taking different antibiotcs before i did the some HPI treatment.
Really long story to tell it right now.
I say it is not perfect now but 80% better, it is still there but more as a discomfort as more smelly gas than average "good" people. More lose stools than average a bit more cramping I guess but really i am sure i will get it to 100%.
It is a hard and dirty method, it takes a strong mind to do it yourself and I am not willing to try it every month, i give it time, I have a pretty good life after coming back of 9 years horror.
We have to setup a board so it is easier to follow/talk about it?
I am sure we all have a story to tell. The board is a great idea any suggestions for existing platforms or creating something from scratch?
momfer I personnaly do not care how hard, dirty and smelly method HPI is, we all know it is a small price. Also HPI is an old medical procedure, which currend doctors do not want to hear about (they know it is the only cure for e.g.,Clostridium difficile, but will never suggest it). I have done HPI and must say it can easily be performed in a very clinical manner even at home...just need to think of it as medical procedure. I have also done extensive research with probiotics and found only VSL#3 to have some effect on UC and that in mild to moderate inflamation.
there are two other very effective probiotics for all digestive diseases. they can be used as life rafts until you get the HPI done because these probiotic wont cure like HPI. they are called mutaflor and the other is called lactobacillus sporogenes. both have but mainly mutaflor has plenty of controlled studies to back there effectiveness. there up there with VSL3 or perhapes even better. but untimately its the HPI thats going to cure. there is also a sugar that feeds good bacteria only. this sugar cant be digested by humans it can only can be broken down by the bacteria in your gut hense giving them a feed source to grow. its called Arabinogalactans and the best product available that i found is by thorn called arabinex. there is studies on its effectiveness also. but if your missing important bacteria to begin with then i cant see it helping completely. from micky.
Hi,
There are some promising results with VSL#3 and perhaps Mutaflor (Escherichia coli strain Nissle 1917) for UC. As mentioned by micky these aid to achieve and prolong remission (in selected cases), but do not cure. There are alot of commercial probiotics out there, but I belive these are useless for UC. Regarding Arabinogalactan, it is something I have not tried, but I assume the mechanism is same as inulin. Currently I am using VSL#3 and have started to take Propolis tincture, basically I am experimenting different combinations see what works. I started using VSL#3 3 years ago for my flare, the first time I achieve results within a week with only 2 sachets daily. Currently I am taking 4 sachets/day of VSL#3 for my current flare, but it feels the effect has winded off or the flare is more sever than mild to moderate. For me VSL#3 is at its best when conventional medicines are dampening the inflammation and then the probiotic kicks in and remission is achieved faster. Based on my experience VSL#3 by it self is not enough to achieve remission (maybe my UC is more stubborn), I get results when using it in combination with other standard UC medication. I am already thinking about my next HPI course, this time I will not do the mistake from the previous time when I did 10 sessions and did not top it up. 13 great and symptom free months later I was in trouble.
cheers,
Scandinavian HPI experimenter
i guess this is becoming the blog
Hi,
Great reading all here.
I recognize a lot in the Scandinavian HPI Professor ;-)
Topping Up is the way to go. As told by the people in Australia but dont forget to change donors if you dont reach the 100% goal at first, more likely close family members, like brothers and sisters. We all got our first bacteria colonies from our mother.
Anyways, I am thinking to setup a Forum real soon to Bundle the experiences. If you can't cure it 100%, 50% or 25% is also better than nothing and it gives hope, at least that gave me a huge boost.
I forgot to say that I never had any success with VSL#3 and Mutaflor as it is not strong enough. Even if it does a bit it will never colonize between the real stuff in the colon.
Why practise more with VSL#3 and Mutaflor if HPI does the real thing?
Hi Momfer,
I would like to mention that for me the most difficult part in the HPI business is getting the suitable donor. Since we are talking about human faeces it is no something you easily bring up and expect people to understand (things get more complicated if there is no suitable donor in the family either). The CDD in Sydney and their Probiotic Therapy Research Centre is a good example what every gastroenterological policlinic all over Europe should have. I tried bringing up the idea to my gastroenterologist and he was very interested with the idea and even mentioned that they know it is for example the only way to beat C.Difficle (they however prefer to pump up patients with very strong antibiotics as much as the human body can take and if that does not work maybe, perhaps they can suggest something like HPI) but he and his colleagues refused to have anything to do with my attempt to perform HPI, it seems they did not want to get labelled as the “faeces” doctors or something.
Regarding the use VSL#3, I used it because I hope it will help me get into remission and only then when my bowel is somewhat in a satisfactory condition will I do HPI and increase my chances of the new flora populating my gut. If VSL#3 helps even 5% towards achieving my goal then I will take it…5% is much much better than Asacol we know that ;)...People with UC will most probably need to wait another 40 years for some one to invent the new "Asacol", which works better than placebo...I do not have 40 years, I will take my chances with HPI and hopefully sooner than later.
Scandinavian HPI experimenter
do you have to provide your own stool donar or can the CDD provide you with one. please tell more info of this its something i really want to know. cant one of the staff give there's or can they get some uni student to donate. phew man this is somewhat a terrible topic but its the best idea in the history of medine i erection. imagine, curing the gut would also cure all the secondary disease's that acompany it. i believe this very strongly others may see it diferently.
Please let us continue to share our experiences at http://groups.google.com/group/hpit
thx
Hi I have spoken to CDD and they have a donor pool which they say is very safe and tested.Still a big risk for me since I have not got as severe an illness as some of you.Seriously considering it.I would also like to see more figures(success rates) but they will come with time.Even the HPI at home is a disgusting and difficult experience,but easily rationalised when you are desperate for a cure.I seemed better for a few weeks from my chronic d. symptoms but it didnt last.Then I felt depressed for quite a while.Its good to chat to others who have been through it.G
I take 28 Imodium daily to stop diarrhea. I've had chronic diarrhea for 24 years but just over the past year and a half had to increase my Imodium from 4-6 pills a day to 28. This happened after a severe viral infection. I am going to die in less than a year if I do not find a way to lessen my Imodium intake. I've done every test possible to find the cause. But I have not thoroughly been tested for parasites. My husband is willing to do the HPI but he is not the cleanest donor. He is the only donor I could find. At this point I have no other option. They tell me I have IBS because no cause can be found. I understand that 70% of stool tests come out as false negatives so treatment for an undiagnosed condition is risky. My liver enzymes are high. I've been told this is due to malnutrition and dehydration. I'm very thin and weak. I hope, I pray HPI helps my condition.
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