Testing before and after fecal transplant

Discussion started by Maff 9 years ago

I think for those of us planning to do fecal transplants at home (or even in a clinic) it's essential to test the state of our stool and gut microflora both prior to the procedure...and afterwards so we have empirical evidence of the hopefully positive results. Most of us will have had stool tests such as a CDSA already in trying to diagnose our health problems but it would seem like a good idea to have one as close to the start of treatment as possible (obviously before any antibiotics are taken if you are following this protocol).

My feeling that the best test currently available is the GI Effects Profile offered by Metametrix since it uses PCR to look for DNA fragments from microbes and can thereofre identify a greater variety (including anaerobes) and is also likely to be more sensitive and accurate than the culture methods usually used.

What do you guys think? Do you agree?

 

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Tracy Mac
Tracy Mac
Just finished my first three days of infusions, see here for a giggle if you think HPI is a laughing matter?

thepowerofpoo.blogspot.com/2011/08/…
8 years ago
Maff
Maff
Don't apologise for your sense of humour Tracy...we definitely need one to survive these illnesses! Love the quote, very apt, thanks
8 years ago
Tracy Mac
Tracy Mac
Saw this quote from Alice in Wonderland and had to share. Apologies for my sense of humour but it reminded me of us.

"But I don't want to go among mad people," Alice remarked.
"Oh, you can't help that," said the Cat. "We're all mad here. I'm mad. You're mad."
"How do you know I'm mad?" said Alice.
"You must be," said the Cat, "or you wouldn't have come here."
-- Lewis Carroll
8 years ago
Maff
Maff
The de-off symptoms I experience used to take a week or so to set in but now it's within hours, regardless of thmetod of killing Candida/yeast. Of course these are quite unique symptoms to me so you may well be fine and get some benfit from the Rife machine. I just have not been able to use one long enough to give a worthwhile opinion, sorry!
8 years ago
Tracy Mac
Tracy Mac
How long did it take for the die-off to set in? Straight away or a few days?
8 years ago
Maff
Maff
Yes I've tried Rife machines on a few occasions, once when being treated at an alternative medicine clinic in Mexico and another at home. The problem is that it doesn't get around my problem - I need to kill the yeast overgrowth in my gut but my brain and nervous system cannot tolerate even the smallest amount of die-off. Anecdotally I do think these machines work to some degree however since I experienced the same die-off reaction I do with any other form of antifungal.

There are sites online where people explain how you can make your on Rife machine very cheaply with simple electronic components I believe!
8 years ago
Tracy Mac
Tracy Mac
Maff have you heard of Rife, bioelectronics to kill bacteria in the gut? See here www.electroherbalism.com/Bioelectronics/FrequenciesandAnecdotes/… you can use this thing called an Ondamed www.ondamed.net/… which emit magnetic frequencies that kill bacteria.
8 years ago
Maff
Maff
Thanks for the reassurance Tracy. All I can do is take an informed risk in this situation and I believe I have informed myself as much as possible. It seems the general consensus is that when an otherwise healthy person contracts Cryptosporidium their immune system will get rid of it in most instances but oocysts may still be found in their faecal matter for up to 2 months. Well, my donor sent the test sample off exactly 2 months ago and didn't develop any signs of Cryptosporidosis anyway. I think the time elapsed, lack of symptoms and the fact anti-parasitic herbs have been used for the past month will mean the risk is now minimal.

Once again, fingers crossed for your donor's blood results!
8 years ago
Tracy Mac
Tracy Mac
Yes, you have summed up the issues well re the cryptosoridium and it would seem on balance best to proceed. I think we need to face that there are no perfect donors and we take a risk with anyone we use. Our task is to take informed risks.
8 years ago
Maff
Maff
No problem Tracy. Sounds like you have one donor who could be ideal then. Hope his bloods are all clear. My donor has had the all clear on blood results for viruses but as you know had Cryptosoridium on the Metamtrix Microbial Profile. We've had a few doctors tell us that her immune system most likely got rid of it by now (she was asymptomatic anyway) but the comments from the CDD you mention have me worried again now. But when it comes down to it I don't really have any other options as no time to retest, all close family members are ill themselves and other potential donors live too far away so it would be a logistical nightmare. Donor had excellent levels of commensal bacteria and has been on antiparasitic herbs since we got the stool results back. I wouldn't recommend anyone else do what I am doing...but I have had enough and am prepared to take the risk. Crypto won't kill me but I'd obviously rather avoid it so hopefully my donor is now clear!
8 years ago
Tracy Mac
Tracy Mac
Thanks for the info Maff. That all makes sense. One of my donors has failed his test due to a asymptomatic parasite. CDD said not to touch him. The other has passed the test for pathogens but still waiting for blood test and the Bioscreen test. Will have results by mid next week. He's impossibly healthy and travels toThailand regularly, eating anything he likes without getting travellers diareoh. Fingers crossed. I would love to have more than one donor to inject some hybrid vigour into my gut, but at the moment I will be grateful for one.
8 years ago
Maff
Maff
Hi Tracy,

I would agree with the CDD but for an additional reason to the risk of infection. It's well established that kids have significantly different gut microflora composition to adults so using a child as a donor will not be providing you with the microbes that you would normally have as a healthy adult. So although I can be far from sure what the outcome would be I would think at best you would not get any benefit from it. Didn't you say previously you had two healthy adult donors lined up?
Also I would caution against your lack of colds etc meaning you wouldn't pick any infections up. It could be that your immune system is actually depressed and/or dysfunctional and does not react as it should to viruses and other infections (remember, it is the immune resonse that causes symptoms not the virus itself). As I've mentioned elsewhere, I too have not had a cold or flu for some 14 years but I damn sure have gut infections, athlete's foot etc. I myself am more than a little concerned my planned HPI will send my immune system into a tailspin but have very few other options. Anyway, I personally would go with your adult donors rather than the 4 year old.
8 years ago
Tracy Mac
Tracy Mac
Maff, what do you think about using a 4 year old as a fecal donor?
The CDD don't recommend children under 16 or anyone who works in childcare centres because of all the childhood illnesses floating around. But given that my immune system seems to be overactive rather than under active I'm thinking this is not a concern? I haven't so much as caught a cold or an infected paper-cut since I've been in the grips of this condition.
What I'm more concerned about is catching something like the intenstinal worms that kids often transfer to each other through sandpits etc. Then again, what's the worst that can happen - another dose of anti-biotics? Business as usual for me. The pluses are that this kid is incredibly healthy, vegetarian, doesn't eat sweets, never been on anti-biotics and is vigilantly protected by parents from chemical exposure wherever possible.
I wouldn't get him tested, I would just do it. What do you think?
8 years ago
Maff
Maff
Wow, surprised their not more on the cutting edge at Addenbrookes Mike, their reputation proceeds them! Sorry to hear you didn't receive much help but it's brilliant that you have had more success with self-treatment and I know you will enjoy going back to see the consultant to tell them how it is!

Thanks for the link to that Facebook page Tracy! Good to read success stories and there seems to be a good amount of interest from visitors on Facebook too
8 years ago
Tracy Mac
Tracy Mac
Yeah I'm looking forward to proving a few people wrong too...

Centre for Digestive Diseases told me they only use HPI as a last resort for UC. Don't know why. But there is a guy on facebook who says he cured his wife of UC with it.
www.facebook.com/pages/Fecal-Bacteriotherapy-is-The-Bomb/…]
8 years ago
MikeH
MikeH
Well i'm in Cambridge and see a specialist at Addenbrookes which is supposedly one of the best gastro centres in Europe. Not my experience. One of the first times I went (about 8 years ago now) I was told that diet has little to do with UC and shoved on steriods and immunosuppressants. They did their job and kept me in remission but they masked the symptoms while I continued to feed the vicious cycle.

I mentioned FT to the gastro last time I was there in April. He said he'd heard of it but there was no plan to do any trials for it and he didn't believe that the answer to UC lay in the area of bacteria.

I'm a bit of a rogue in that sense and its given me a distrust of doctors in general, particularly in the area of gut health.

I'm sure there must be some great doctors out there. I just have been unlucky so far but haven't really shopped around as such.

Looking forward to being able to go for my annual check-up with the gastro and tell them i'm off all meds, fighting fit, UC free and never coming back!
8 years ago
Maff
Maff
Antibiotics are definitely a double-edged sword Mike. I am certain they started all my problems also but I also think they have to be part of the solution.

I'm surprised to hear you're not working with a doctor. What have you had in the way of treatment and care from your GP and specialists etc? Yes Dr. Myhill prescribed the rifaxmin since I have symptomatic and lab evidence pointing to SIBO. My GP is very supportive but GPs' hands are tied to a huge extent thesedays by NICE guidelines, evidence base, and funding restrictions. They don't really seem to have the option to use their own clinical judgement even when they really want to!
8 years ago
MikeH
MikeH
I'm pretty sure that antibiotics started this whole UC shebang in the first place so for that reason i'd prefer not to. The other reason i'm not going down that route is because I don't have a medical professional on board. I guess if i'd got a doctor to help me and they we're willing to write out the prescription then I might have gone there. I'm thinking if without antibiotics has no effect then i'll try and get hold of some and try the HPI again.

Did Dr Myhill prescribe you the antibiotics or do you have a local GP on board?
8 years ago
Maff
Maff
No problem Mike! I have just posted a new discussion where I will document my HPI experience. I have included a list of antimicrobials I am using in my preparation if you want to take a look. Have you reacted badly to antibiotics in the past?
8 years ago
MikeH
MikeH
Thanks for the info Maff. I would be interested in knowing which anti-microbials you are using if you are happy to divulge. I'm not going down the antibiotics route but will most likely do some kind of anti-microbial work - perhaps silver.
8 years ago
Maff
Maff
Tracy - Sorry to hear the Interfase Plus didn't agree with you. We could speculate all day on the cause of your increased symptoms and it could be a good sign (microbial die-off) or bad (toxic metal liberation by the EDTA). Perhaps it would b worth giving plain Interfase a go as this takes the EDTA out of the equation.

MikeH - IMHO it may still be of benefit as it may allow for a beneficial rebalancing of the gut ecosystem but I think most benefit would be derived from the combination with antimicrobials...assuming an overgrowth of undesirable microbes is a significant issue.

FYI I have been on 8 caps of Interfase Plus (the max dose) for a few days now and no reaction adverse or otherwise to report as yet.
8 years ago
MikeH
MikeH
Maff, do you think it is worth going for the interfase supplement if I am not going down the antibiotics route?
8 years ago
Tracy Mac
Tracy Mac
I've tried the Interfase Plus for two days and within 24 hours I developed symptoms, namely stinging eyes, headache & increase in brain fog bad enough that I could not work out columns on an excel spread sheet. Nor has it improved my PH levels, which for me signifies bacterial load, although of course two days is not really enough time to judge. I hasten to add that these kind of symptoms are not unusual for me as I react to many 'normal' things. I doubt it would do that for others. I must have a very leaky damaged gut wall that wrongly absorbs things.
The issue for me is that I have to function at work tomorrow so I've had to stop the Interfase. This is where I always end up, choosing between continuing the experiment or functioning at work. Work is too important financially and emotionally to give up.
8 years ago
Maff
Maff
Well I've heard back from my doctor and the news is that there is no point retesting my donor as her immune system will almost certainly have got rid of the Cryptosporidium by now. Her GP said the same thing yesterday when she went for blood tests for viruses. So assuming the bloods come back fine we're back on with the HPI.

My doctor also said that she thought HPI wouldn't benefit me as I have some bacteroides and it his her position that HPI only benefits those totally lacking in these particularly microbes. But, I personally believe it is worth a shot as my commensal bacteria were borderline low across the board and I am hoping the HPI will act as a powerful antimicrobial against yeast and bacteria in my small intestine...we'll see! I will start my preperation next week with HPI starting in 2 to 3 weeks but I'll start a new discussion shortly to chart my progress.

Tracy - Did you start the Interfase Plus yet? I hope it didn't cause any bad reactions. Mine should arrive just in time to start with the rest of my preperation.
8 years ago
Maff
Maff
I think the dose is up to 8 capsules per day? I don' have mine yet so I'm not sure. I was planning o taking the maximun recommended dose. But it is probably wise to start off low and work up given that it contains EDTA (a chelating agent that binds toxic metals).

Not exactly. The Interfase Plus is designed to breakdown 'biofilms' - the habitat mirobial colonies create for themselves. But you are right that doing this should make it easier for antibiotics/antifungals to kill the bacteria or yeast.

Good luck with it.
8 years ago
Tracy Mac
Tracy Mac
Maff Do you have any idea how much of the Interfase Plus should be taken with the anti-biotics? I'm starting it today on a Friday in case I have a reaction to it, as I do to most things! As I understand it the bottom line is that the Interfase busts open the cell walls of the bugs so that the anti-biotics can get in?
8 years ago
Maff
Maff
idkwia - I got the test through Dr. Sarah Myhill. I've been a patient for years but you can order tests through her website - www.drmyhill.co.uk

Redo
- The microbial test I had is actually only one section of a larger profile that includes digestive function, gut immunity etc. I'm 99% sure you can't test for just single pathogens even if they previously showed up on a test. Would be very useful if you could!
8 years ago
Redozipous
Redozipous
Perhaps it would be possible to retest just for the microbes in question? I guess that'd go faster.
8 years ago
idkwia
idkwia
Maff - who do you get your Metametrix test through and how much do they currently charge please?
8 years ago
Maff
Maff
Thanks Redo, I was actually going to post that myself! I tracked it down earlier today and had a good read. It sounds like an immunocompetent individual like my donor should be able to fight of the Cryptosporidium infection but we're going to use some antiparasitic herbs such as those in recommended in that Metametrix interpretation guide for a few weeks. Sounds like good news on the unidentified parasite as these are considered non-pathogenic in humans in the most part. I was also heartened by the statement that Bacteroidetes and Bifodobacteria sp. should be seen in the highest amounts as mine are not but my donor's are - convincing me further that HPI will be helpful.

Emailed the doctor's office for another test kit so we can make sure the Cryptosporidium is gone before commencing.
8 years ago
Redozipous
Redozipous
I found the Metametrix's guide for how to handle a positive Cryptosporidium for you Maff.

Check page 5.

www.metametrix.com/files/test-menu/interpretive-guides/…
8 years ago
Redozipous
Redozipous
Thanks a lot for posting your results Maff!

I think those defiantly can tell that you're onto something. As you say, you're in the lower part across the board, except for a too high Lactobacillus count.

Perhaps a little off topic, but my hypothesis lately have been that a retrovirus (perhaps MLV related, perhaps not) infect healthy people, the retrovirus does so that the body is no longer able to regulate the gut as it should, and the result is CFS.

There are many loose threads pointing towards that.
8 years ago
Redozipous
Redozipous
Here's another article describing what to test for:

gastroenterology.jwatch.org/cgi/content/full/2010/604/… are quoting the Silverman study.

"Stool donors were tested for HIV; human T-cell lymphotropic virus I and II; syphilis; hepatitis A, B, and C; and Helicobacter pylori antibody. Recipients had routine blood tests as well as tests for serum protein electrophoresis, serum immunoglobulins, HIV, and antigliadin antibodies. Stools from both donors and recipients were tested for culture and sensitivity, ova and parasites, cryptosporidia, microspora, and CD toxin. "
8 years ago
Maff
Maff
Hi guys,

Yes, everything was within the reference range idkwia but all genera of commensal microbe were in the bottom two quintiles of the reference range and a couple were very close to being below the reference range. If it was just one or two types of microbe I would say I was ok but with all of them low I take that as a sign that things are not optimal. Compare my results with those of my proposed donor - her microbial levels are all in the third quintile or higher. That is where I would like things to be for me! I draw comparisons with my borderline low white blood cell count and cortisol levels. They are dismissed by most doctors as normal but I am riddled with infections and treatments that raise cortisol have a clear positive effect on my ability to function. Just a couple of examples. Borderline low is not where you want to be in my experience!

I've not had a hydrogen/methane breath test for SIBO as I had already had the Biolab Gut Fermentation profile and Kenny de Meirlier's H2S tests and along with my symptoms I don't feel there's much point spending more money on the breath test to "confirm" a diagnosis that is pretty much confirmed already. The hydrogen/methane breath test is not considered to be particularly reliable anyway according to a lot of research papers.

Agree with you Tracy, my donor hasn't had any significant GI illness despite testing positive for Cryptosporidium and the unidentified parasite - but it would likely be a different story if I introduced it to my gut. My donor works part-time shifts as a nursing assistant on an elderly ward and there had been an outbreak of diarrhoeal illness just prior to when she gave the stool sample for the test. She said on the day of giving the sample she felt a bit off but did not go on to develop diarrhoea or any other signs of acute Cryptosporidium/parasitic infection. Given this I suspect her immune system took care of it and there's a good chance she will now be clear of these things. I wouldn't risk it without retesting so I think that's what we're going to do. Don't want to give up on this just yet and everything else on her test was excellent donor material.

I would go along with your mind-gut psychologist 100%. I am certain over the coming decades the gut microflora will be recognised as influencing inheritence of disease susceptibility as much as genes in many cases. Good luck with your donors' tests!
8 years ago
Tracy Mac
Tracy Mac
I wouldn't take a risk on the Cryptosporidium Maff. You're system is too vulnerable and you are putting so much work into your preparation that it would be devastating to catch another bug.
Regarding the issue of donors being relatives, I actually believe it is better NOT to have a relative. The mind-gut psychologist I see works with Bioscreen labs at Melbourne University and he says there is increasing evidence that many inherited mental and pyhsical conditions are actually bacterial conditions passed through families. I am having two donors tested and both are as opposite to me as I could find. Both male, fit, healthy and with calm even tempraments.
8 years ago
idkwia
idkwia
Maff - I had a look at your Metametrix results and they look pretty good to my untrained eye. If you are too low or too high with regard to any of the gut flora, Metametrix will bring that to your attention which they haven't done in your case. On my test, two of the categories are actually marked as low because they are outside the reference range. It seems that if you fall outside their reference range then they wiil mark low or high but not if you are within their reference range.

However, of course they are not able to test for various strains of bacteria and so you may have an imbalance of those.

If you really do have SIBO then rifaximin, diet and the other things you are doing may do the trick on their own.
8 years ago
idkwia
idkwia
Maff - with regard to your SIBO have you hydrongen and methane breath tested positive for it?
8 years ago
Maff
Maff
Hmm just been researching Cryptosporidium and don't like what I'm reading - this could put the brakes on things. Apparently it can cause severe diarrhoeal illness, particularly in the immunocompromised (CFS anyone?). Worst of all it invades the intestinal cells and is resistant to treatment. This sounds like it would be a HUGE risk if I went ahead with HPI...
8 years ago
Maff
Maff
Thanks Redo. I have just uploaded images of the test results to a new album within the group so be sure to check them out and let me know your thoughts. I am feeling quite positive about the HPI given the comparison between myself and my donor in terms of commensal microbial numbers.

Donor is not a blood relative but from what I have read this is not a major issue. Gastroenterologists who perfrom HPIs have said they recommend relatives to make everyone feel as comfortable as possible about it as much as for any perceived benefit in terms of the microbial content of the faecal matter.

Starting antifungals for small intestinal yeast overgrowth on Monday. Will continue for 3 weeks at high dose and add rifaximin 1600 mg/d for the final week to take care of SIBO. The Metametrix stool test did not identify any yeast or abnormal bacteria but I don't put much faith in stool tests for identifying microbial overgrowth in the small intestine. Symptoms and other tests (Biolab Gut Fermentation Profile, Kenny de Meirleir's Neurotoxic Metabolite Test) have all provided convincing evidence that I have a problem there.
8 years ago
Redozipous
Redozipous
Congrats Maff. I am really looking forward to hearing about how it goes with you. I think you're lucky with your donor. Hope it's alright if I ask, but is it a blood relative, or spouse/friend? (perhaps you've told earlier, but I am too foggy to browse now).
8 years ago
Maff
Maff
Metametrix test for my donor showed very healthy levels of all commensal flora i.e. Bacteroides, Bifidobacteria, E. coli, Lactobacillus etc. Only problem is Cryptosporidium showed up in the parasites section so will need that treating first. Otherwise I am very pleased as much higher than me in the good microbes across the board!

Glad you managed to find the InterFase Plus Tracy. Sounds like it was a bit of an effort! Thanks for posting the link.
8 years ago
Tracy Mac
Tracy Mac
I could only find the Interphase Plus in the US and had trouble getting any supplier to ship to my address so there may be geographical restrictions. I finally got it at www.forresthealth.com I think purchasing via Paypal may have avoided the restrictions.

8 years ago
idkwia
idkwia
Maff - I would be very interested to know what the Metametrix test showed for your healthy donor i.e. was everything normal?
8 years ago
Maff
Maff
Seems like a strange thing to say about yeast infections - we all know fungus likes dark, damp environments and what fits the bill better than the gut? If you are susceptible to yeast infections it follows that the organism will take advantage of this and colonise wherever possible. While it's true that just because you have thrush or athlete's foot doesn't mean you have intestinal yeast overgrowth, it seems to me that the gut is the perfect habitat for the critters if they are given a chance by immunological susceptibility and/or disruption of normal gut microflora by antibiotics etc.

Where did you get your InterFase Plus from Tracy? I had to order from Amazon.co.uk and the delivery time is very slow! I'm going to start my antifungals (nystatin, caprylic acid formula, oregano oil) on Monday and maintain for 3 weeks. I'll be taking the antibiotic drug rifaximin at 1600mg/day in the third week to tackle SIBO. Hopefully the InterFase Plus will arrive soon and I will introduce that at the maximum dose as soon as it does. I'll start a new discussion to chart my progress over the weekend. I now have Metametrix microbial stool test results for both myself and my donor and things generally look on both sides like HPI is still a good idea.
8 years ago
Tracy Mac
Tracy Mac
Maff, when do you start your mega-kill-off of bugs? I have ordered the Interfase Plus. I take it that you just combine it with the anti-biotics and it makes them work better?
8 years ago
Tracy Mac
Tracy Mac
It was a complementary doctor who told me about this about the yeast. I don't think he was saying the gut isn't a mucus membrane so much as that different bugs will overgrow on different membranes. So just because you have chronic thrush in other parts of your body doesn't mean you have it in you gut. Thankfully my candida is more or less controlled by diet and this is reflected in my gut tests which sometimes show it present, other times no. But I can't eat so much as a piece of fruit without a breakout.
8 years ago
Maff
Maff
idkwia - Yes, the anerobes were pretty much what I expected (low) but it was surprising to see high Lactobacillus sp., particularly since they had been very low on my previous Genova CDSA. Given there was 10 years between I think perhaps my diet over that time was more favourable to Lactobacilli than any other genera of microbe. My most frequent source of carbohydrate over this time has been wholegrain rice and my result reminded me of a great article by Prof. Malcolm Hooper entitled 'Guts, Brains and Gulf Veterans' in which there is a table listing various foods and their impact on different types of gut microbes. It seems rice favours Lactobacilli while oats promote Bifidobacteria and Wheat, Bacteroides. The article is here - www.ei-resource.org/articles/gulf-war-syndrome-articles/guts,-brains-and-gulf-veterans/
Thanks for the supportive message. I am getting nervous about things now and really hope the rifaximin, antifungals and faecal tranplants are beneficial. Given the severity of the problems in my gut I think it will have some kind of impact. Fingers crossed that it's positive!

Tracy - That quote from Bioscreen Laboratories is very enlightening, thanks so much for posting that. I have confirmed metabolic acidosis via simultaneous blood, urine and saliva samples and the symptoms described match what I experience very well. I will have to check if rifaximin has any effect on Lactobacilli and perhaps add another antibiotic into my preperation that can bring Lactobacilli numbers down a bit. Seems like Bioscreen have published a lot of great information. I'll investigate them more this weekend hopefully. Who was it you were talking to about yeast overgrowth. I'm not sure what they were getting at as the gut IS a mucous membrane - a huge one.
8 years ago
Tracy Mac
Tracy Mac
If you haven't already seen it you may be interested in this research by Bioscreen that links CFS to intestinal colonisation of gram positive facultative anaerobic D-lactic acid bacteria

www.cfids-cab.org/rc/…]
8 years ago
Tracy Mac
Tracy Mac
Maff, According to the Bioscreen Laboratories at University of Melbourne high levels of Lactobacillus Spp. in the anaerobic microbial flora lead to:
"Metabolic acidosis and neurological dysfunction (depressed conscious state confusion aggressive behaviour slurred speech and ataxia) have been reported in patients with increased level of lactobacilli in the anaerobic faecal flora. Cease all oral supplementationhj of lactic acid probiotics if indicated. If required consdier an antimicrobial agent eg ampicilln to assist in the suppression of the organism lactobacillus spp."
As for the yeast, I was told that yeast overgrowth in the gut is a different syndrome from yeast overgrowth on mucus membranes, which generally occurs due to acidosis and wrong bacterial balance on the mucus membranes. This is quiet logical when you think about it. What do you think?
8 years ago
idkwia
idkwia
Maff - the results you had were interesting. The tests I had done by Genova and Metametrix were only 6 months apart and they were different too but not as different as yours. It does make you womder about the accuracy of these tests especially when the samples have to travel so far and no doubt subject to changes in temperature etc. It is a shame and somewhat surprising that there are no places in the UK that do these types of tests.
Hopefully the Rifaximin will sort out your SIBO as I have heard good results from this.
Faecal infusion will hopefully replenish your flora so fingers crossed.
8 years ago
Maff
Maff
Got my test reults back from Metametrix guys - makes for interesting reading. I am in the lowest percentile range for all types of anaerobic bacteria and both Bifidobacteria and beneficial E.coli are pretty much absent. Strangely Lactobacilli are at the top of the range (in contrast to a 0 on the Genova CDSA I had done 10 years ago - my condition/symptoms having not changed). Perhaps more surprising is a total lack of "additional" and "pathogenic" bacteria, yeast or parasites. I will take that as a good thing but it's obvious from other testing that I have big problems with SIBO and small intestinal yeast. The moral - don't rely on a single test and always think about how the test works and what it might miss...

Anyway, the very low numbers of anaerobes would seem to make me the perfect candidate for faecal bacteriotherapy via rectal infusions so things are still on track. Waiting on my donor's results now.

Redo - the Metametrix test also looks for parasites and their ova if that's of interest to you.
8 years ago
Redozipous
Redozipous
Thanks. Do you have a link to the Worms test by Genova Mike?
8 years ago
MikeH
MikeH
Redo: Test did cover Ova in the parasitology panel. All clear.
8 years ago
Redozipous
Redozipous
Mike: When you got your test results back, did it say anything about "Ova"?

Two of the test protocols test for that.
8 years ago
Maff
Maff
Yeah all these labs are American so they have either subsidiaries or agents (or both) in the UK and Europe that handle test requests from doctors and sending out the test kits to the doctors or patients directly. They then receive the samples back and have them shipped by expedited methods to the lab in the US for the actual analysis. Genova, Metametrix etc all operate like this.

Sent my Metametrix GI Effects Profile (Microbiology) off today by the way! Few weeks for the results then I'll take any required antimicrobials before commencing with my HPIs.

8 years ago
MikeH
MikeH
I think gdx is the european arm of Genova. As far as i'm aware the stool testing can only be done in America. That's where my donor's sample has gone. Now both me and my donor have been out-travelled by our poo!
8 years ago
Redozipous
Redozipous
Hi,

Yes, that helps a lot.

Is it this site www.gdx.net/… this site www.genovalabs.com/ That you ordered the tests from
8 years ago
MikeH
MikeH
I didn't have any direct contact with the labs but have this from an email from my nutritionist that she received from Genova Labs:

a. If Cells is White or Red blood cells, these would be reported on in the Parasitology microscopy section.

b. Parasites – we will report on anything seen, including the parasites he has listed in the Protozoa section.

c. All would be covered by the microbiology culture if found in sufficient quantities to culture. C.Diff would need to be added on as it is done by EIA. This is £80.

d. The Protozoa would be covered in the parasite microscopy. The worms would need to be added on as Macroscopic Worm Analysis (£31)

The smallest profile again would be the Comprehensive Parasitology + Worms + C.Diff which would be: £146 +£31 + 80 = £257

Hope this helps
8 years ago
Redozipous
Redozipous
Do you have a link to the lab/test do did on the lab Mike? And what's the name of the test kit(s)?

I found something about CDSA here, but it wasn't very detailed.
www.crohns.net/page/C/PROD/… agree with the before after stuff. How it works is what matters to me too. I don't have the money to do it in the name of science (although I totally see how others could benefit from it).
8 years ago
MikeH
MikeH
I used Borody's criteria for my donor stool testing. Getting it done via Genova. My nutritionist got in touch with a list of what I wanted to test for and they said they could do it. covered three different tests I think (CDSA, parasites and C Diff).

My donor is a blood donor as well so to be able to give blood she has to be cleared for blood nasties so I haven't done any further blood testing.

Results due 29th June.

If you want to have the before and after picture to be able to see exactly what difference it makes then I would go with the Metametrix. For me personally how I feel is all that matters.
8 years ago
Redozipous
Redozipous
Here's what they test for.
Borody ( bit.ly/… ):
•BLOOD
HIV
HEP A IgM, HEP B, C, CMV, EBV, RPR, TOXO
Standard blood tests:
Full blood count, ESR, CLOTTING SCREEN, TSH, ANA, U&E, CREAT, GLUC, LFT, RhF, HLA – B 27, RED CELL FOLATE, B12, ANTIGLIADIN Abs, ENDOMYSIAL Abs, CRP
D) H. PYLORI Antibodies.
•STOOL
CELLS
PARASITES
CULTURE INCLUDING CL DIFFICILE + TOXIN, YERSINIA, AEROMONAS, KLEBSIELLA OXYTOCA, CAMP JEJUNI, STAPH AUREUS. ANTI-ADHESIN ANTIBODY TEST FOR E. HISTOLYTICA.

Silverman ( crohnsend.com/documents/… )
•BLOOD
HIV antibodies, HTLV I/II, syphilis enzyme immunoassay, hepatitis A IgM, hepatitis B surface antigen, hepatitis C antibody, and Helicobacter pylori antibody.
Standard blood tests:
Full blood count, sequential multi-channel analysis with computer-20 (Chem-20), serum protein electrophoresis, serum immunoglobulins, and antigliadin antibodies.
•STOOL
Stools from both donors and recipients were obtained for culture and sensitivity, ova, and parasites (3 separate specimens), cryptosporidia, microspora and Clostridium difficile toxin.

Aas et al. ( cid.oxfordjournals.org/content/36/5/… )
•BLOOD
Hepatitis A, B and C. HIV and syphilis.
•STOOL
C. diff.
Enteric bacterial pathogens (selective stool culture)
Ova and parasites (light microscopy)

Seems like the common nominators are Hep A, B and C, HIV for blood. And c. diff., Ova (whatever that is, the two latter test for it) and parasites for stool tests.

One reason I have had a problem getting tests done, is that the terminology is so broad. "Parasites" can be at least a thousand different species... If I order a test checking for "parasites" it can be something totally different if I choose one lab over the other...
Does anyone know where to get tested for the exact same as they test for in the three studies above? Links are appreciated. I might choose a new donor (just might).
8 years ago
Redozipous
Redozipous
" I think I will post group bulletin where I can compile a list of blogs/websites where people are reporting on HPI experiences." Good idea.
8 years ago
Maff
Maff
Hi idkwia, good to see you again. Was wondering where you had got to! You should receive email notifications for all the goings on in groups you are a member of i.e. this one. To make sure things are set correctly do the following:

1. Hover cursor over the Profile tab in the community menu bar above and click 'Privacy'.
2. Go to the email notification options at the bottom of the page and make sure all are checked as 'Yes'.

If it looks like you're already set to receive all email notifcations then let me know and I'll do some investigation.

Re: Dr. MacConnachie - no reply yet. I am not particularly confident of getting one though to be honest but it was worth a shot!

JUst a friendly nudge guys...can we please keep discussion threads on topic so information is organised and easy to navigate/find. This thread is purely meant to be for discussion about tests people plan to have before and after doing a home HPI. If you want to discuss something else, no matter how trivial...please create a new discussion from the main group page. Many thanks!
9 years ago
idkwia
idkwia
Hi All,
Sorry not been around for a while but I didn't know this group was being replied to so often as I am not getting any email notifications or threads or replies to this group, is there a way of turning such a facility on?

Anyway, Maff and Jamison, have you heard anything back yet from Dr MacConnachie?
9 years ago
Maff
Maff
Don't mention it Mike, we're a friendly bunch and very open...obviously...we like to discuss poo

Redo - I agree with Mike on the donor testing. I would be tempting to just assume your donor seems to be healthy and hasn't been exposed to any high risks for infection but you just never know. Your donor could be carrying any number of bacteria, parasites, yeast and other nasties that don't cause them any problems but would cause your dysfunctional CFS-inflicted immune system to flip out. This is my biggest fear, so I want to make sure my donor doesn't have anything obvious at least. Mike was spot on when he said we're all trying to improve our health here not give ourselves something else to worry about!

Mike - Good to hear that you have seen good results with the SCD. I know it is very helpful for many people with UC. I have followed many SCD and GAPS diet recommendations myself but adapted them to my particular problems. I've found diet helps hugely in reducing symptoms associated with eating and digestion but unfortunately it doesn't cut it on its own for treating the root cause of my chronic illness i.e. bacterial and fungal dysbiosis. Hopefully, like you say, the HPIs will give us a solid foundation on which to build at the very least. I am hoping for something more spectacular though as I am sure we all are...

Good job purchasing all the kit! And thanks for the lead...did it come as a kit on Amazon or did you need to buy it all individually? If you have a link that would be much appreciated

You must be going a bit stir-crazy having to wait until June 29th for your test results! I hope time flows quickly for you this month. I took the first step today and fired an email off to Dr. Myhill's office to see about ordering the Metametrix GI Ecology Profile for myself and my donor. I was pleasantly surprised to find the test is "only" £150 - the Genova CDSA runs at about £250 I believe and doesn't include PCR analysis!

Thanks for letting me know about Matt Robinson's blog, I'll have a good read when I get a chance. There is a blogger called Tracy who had HPI at the Probiotic Therapy Research Centre in Sydney a few months back and is now recovering from various long-standing health problems. She is recording her progress in a blog at thepowerofpoo.blogspot.com/. I think I will post group bulletin where I can compile a list of blogs/websites where people are reporting on HPI experiences.
9 years ago
MikeH
MikeH
Hi and thanks for the warm welcome!

Redo - I'm using my girlfriend as a donor and while I am pretty sure she won't have any nasties, its not a risk i'm willing to take - i'm trying to improve my health here not give myself more problems! I also feel the frustration of the time it takes to get this up and running (i've been actively trying to sort FT since early Feb) but i figure what's a few months if it can give me my life and my freedom back.

Maff - I looked at the Dr Myhill route but they were so busy that I looked elsewhere as well. I got back in touch with a nutritionist who was helping me out before I started on the Specific Carbohydrate Diet and she has helped sort the tests.

I have experimented with natural antibiotics before and had a bit of a bad experience with oregano oil followed by some probiotics. Not sure what happened but it caused a huge flare-up and ended up setting me back a year on my road to recovery which using the SCD had been starting to go well. In fact I geniunely believe I could have got there through diet and supplementation alone but now the barriers just seem insurrmountable.

I've had good experiences with natural antibiotics too but it seems that the 'bad bugs' are just too hardy and it only seems temporary. I'm not suggesting that FT is my only hope but I feel that even if it isn't a complete success it will give me a better foundation from which to carry on my healing progress.

Yesterday I purchased a sieve, gloves, bowel prep, fleet enema bottles and a funnel, all from Amazon. Already bought an enema bag with tube and a blender! Just waiting for the test results on June 29 now!

I don't know if you have come across this before in your searching but there is a blogger called Matt Robinson over at naturaldigestivehealing.com/blog who did an indepth series of posts on bacteriotherapy including a summary of his procedure. He did do the antibiotic prep as well though. Still worth a read.
9 years ago
Redozipous
Redozipous
I am thinking about just dropping the donor testing. Mostly because of the time factor, but also because I am thinking my donor, a familiy member, doesnmt have HIV, or hepatitis. And if, God forbid, they had it (which they don't), and I'd get it, then I'd say that's chances I have to take in life. And I am guessing the other stuff to test for is non chronic, so it's treatabe if I'd catch something... Any thoughts? I know it's a risk to take, but is it a great risk?
9 years ago
Maff
Maff
Hi Mike, welcome from me too. Like Redo said, you'll fit in well - we're most interested in helping each other through the whole DIY HPI thing. It obviously requires a fair bit of planning so I think the more we can share the better in terms of what methods we used/plan to use, where we bought supplies from, how long it took to see results etc.

You're not being selfish at all testing only your donor. At the end of the day the proof is in the erm...poo...and it's how you respond to the treatment that matters. I simply have a curious mind and a love of science/experimentation so testing myself before and after is to satisfy my curiosity and hopefully if all goes to plan my results might also inspire others to give HPI a go. First and foremost though let's hope we all see significant improvements from this!

It seems everyone in the UK is a patient of Dr. Myhill...I have been for 15 years and I know jamison won't mind me telling you that he is too. She is definitely one of a kind and easily the most caring doctor I've ever met so no surprise really. I'm confused though, if you're not working with her or another doctor how did you order the CDSA for your donor? I was under the impression all the commercial labs required a healthcare practitioner to order them. Were you able to order yourself?

Apologies for my ignorance on UC but have you looked into the best natural antibiotics for the dysbiotic bacteria thought to be involved? Is colloidal silver the best option or are you just going for a broad spectrum, catch-all approach?

Great news on the UC trial as well. I think 2011 is the year HPI will really start to take off in a big way as a serious treatment option for all sorts of conditions.
9 years ago
Redozipous
Redozipous
You fit in well, and welcome to the boards. I know of a doc whom did HPI for some three patients with UC not long ago (he had never heard of the Australian study though), and his patients got worse. Important to note that their symptoms was not maganged prior to the treatment. Borody himself writes (in his website) that the procedure is effective in a little over 50% with UC, but I think it's important to manage the symptoms as well as you can beforehand. I guess that would give a better result.

Hey, thanks for the link. I didn't know they were doing a UC trial soon.
9 years ago
MikeH
MikeH
Hi. Not totally sure I fit in here as i'm an ulcerative colitis sufferer but I am going to be doing home fecal transplants. I am currently waiting for my donor test results to come back at the end of the month (I went with the CDSA tests & C Diff) and plan to start as soon as possible in July. I was in touch with Dr Myhill but it was all going to be taking too long as she was so busy. I was planning on testing myself as well as my donor for the before and after results but it is just too expensive for me and this may sound a little selfish but first and foremost i'm interested in how the treatment will effect me. The news that there will be a proper clinical trial starting up in the US in the autumn (www.eurekalert.org/pub_releases/2011-06/…) should provide better statistics anyway.

I will differ in my treatment because I have not been able to get a doctor on board and therefore will not be undergoing the antibiotic therapy prior to the fecal enemas. I will however be doing some natural antibiotics (silver and coconut oil) along with ongoing probiotics and a colonic lavage.

I look forward to further discussions with the group.
9 years ago
Redozipous
Redozipous
Thanks for a warm welcome.

The Silverman DIY procedure can be found here:
crohnsend.com/documents/… testes the blood of the donors for various viruses as well. Including tests for HIV. I know my donor well, and if by chance my donor has HIV (which is well, impossible) then it's just fate. I wont bother checking for HIV, but some of the other viruses I am not so sure of. Perhaps some can have a extremely long latency period. I don't know. But I doubt that it's all that important to check for.

He does these fecal tests:
"Stools from both donors and recipients were obtained for culture and sensitivity, ova, and parasites (3 separate specimens), cryptosporidia, microspora and Clostridium difficile toxin (C. DIFFICILE TOX A/B II; Techlab, Blacksburg, VA)."

Thanks for pointing me to the Borody self administration protocol. I didn't know of that...
I see he also tests for HIV.

Hey, the title is tabloid, the content is not ;-)

I would have given it more than a week in the beginning of august. Many require at least two weeks. I practiced with an enema (saline), and that's really easy. But chances are I might have to get it to the small intestines as well. Yes, good idea to make a new topic.
9 years ago
Maff
Maff
Hi guys and welcome to the group Redo, great to have you with us!

Redo, my plan is to use the Metametrix GI Effects Profile for stool testing of both myself and my donor. This looks like the best commercially available stool analysis as it uses PCR to detect microbial DNA rather than relying on cultures...which obviously can't detect anaerobes that make up the bulk of the gut microflora. I'll be looking for bacteria, yeasts and parasites with this. Thanks for mentioning that this test also looks for H.pylori Nick, I was unaware of that. Not sure it will be as reliable as the standard breath hydrogen H.pylori test but it's good enough for me. I obviously know my donor well...

Redo - Where can we find the Silverman article? I am roughly basing my home HPI preperation and procedure on information provided by the Probiotic Therapy Research Centre in Australia run by Prof. Thomas Borody. Another member ikdwia was kind enough to upload an instruction document from the centre in our forums. I re-uploaded it in this forum thred so you can download it from here - www.ei-resource.org/forum/candida-gut-dysbiosis-leaky-gut-syndrome-ibs-/… instructions are not overly specific but suggest donor stool should be tested for A) Cells Parasites C) Culture including C.diff + toxin, Yersinia, Aeromonas, Klebsiella Oxytoca, Campylobacter jejuni, Staphylococcus aureus. Interestingly my previous stool analysis (CDSA - see group photos) detected Klebsiella oxytoca. Not sure if this was eradicated using the ciprofloxacin I took for it as I was never retested.

I had come across HPI mentioned over at Phoenix Rising before but didn't know you'd been writing extensively on it...I'll hop over and check out your tabloid-titled material

Nick - Thanks for the tip on H.pylori testing in the Metametrix test. I was wondering how my healthy donor with no gut symptoms was going to get a H.pylori breath test! Would have meant a trip to Biolab in London I think! Good luck with the LDN buddy. I hope it's all positive results and you don't have to go through too many teething troubles. Make sure you join the Yahoo! Group for CFS and LDN as idkwia suggested if you haven't already - you'll get a lot of support there. I'll setup a group here and invite you - would be great if you could share how you're getting on.

Yes, first week of August is D-Day for me. Looks like Redo may beat me to it though so you may have a few of us reporting back on your HPI experiences before you join us!

Thanks for the info on nasogastric tubes and the video Redo. I'll create a new discussion thread where we can discuss that issue specifically so things don't get off topic here...
9 years ago
Redozipous
Redozipous
Inserting a nasogastric tube is really easy. It's some uncomfort the first time but it's easy to get used to it. Here's a video of how to do it:


And">www.youtube.com/…
. Like I wrote in the other thread I had some worried the stomach acid would kill off the "new probiotics", but apparently it's not so (since administering it via a nasogastric tube can cure c.diff. in the colon... www.ncbi.nlm.nih.gov/pubmed/… )

I will do it myself. First like an enama, if that doesn't work, in a nasogastric tube, and if that doesn't work in a duodenum tube (I'll need help with the latter).
9 years ago
jamison
jamison
Hey Maff,

Yeah I should have the LDN arriving any day now so if you fancy setting up a group I'd be happy to let others know I get on (I would do it myself but am not known for my IT prowess and have been referred to as a luddite at times!)

About the H pylori - this is tested in the metametrix stool test so I don't think you would need to get a separate test for your donor.

So first week of August is D-day eh? I hope it works for you mate. I might soon be joining you...
9 years ago
Redozipous
Redozipous
Matt, do you know where to test the donor for pathogens? (name of a lab which does it)
And, did you test the donor for the same pathogens as in the silverman artice?
I think the best way to get it down to the small intestines is a syringe and a nasogastric tube. It's not hard at all. I am writing much about this subject in the phoenixrising forums. Just search for "it's all in the gut. Why we get cfs" (I know, tabloid heading), and Faecal transplant cfs parkinson phoenix rising (then you'll find the other thread).
9 years ago
Maff
Maff
Hi Nick,

You're always busy at the moment with testing and appointments with your 'mdical team'. Must be costing you a fortune buddy, I really hope it all works out in the end. I am sure it will. We're a determined bunch aren't we!

Great to hear that both Dr. Pouria and Dr. Myhill were on board with the faecal transplants with certain safety caveats obviously. In my conversation with Dr. Myhill a few weeks back she was generally in favour but I think your test results will have made her happier recommending the procedure for you. In my case it all seems to be upper gut fermentation so less clear whether the faecal transplant will work...but I am pushing ahead anyway.

I agree with you entirely. It has to be logical that replacing severely disrupted gut microflora with what would be considered "reasonably healthy" has a good chance of producing worthwhile benefits, particularly if the gut issues are the major driver of pathophysiology and symptoms. I will be ordering the Metametrix GI Effects Profile with Parasitology for myself and my donor in the next week or so. Only other test I really think needs doing is H.pylori for my donor if I am going to attempt to get the faecal matter in orally somehow.

I am on a bit of a tight schedule now as I need the testing done and then need to source appropriate antimicrobials and stock up the on various supplies required. I am aiming for first week of August as the start of 10 days of faecal transplants. I'll post my detailed plans in a new discussion shortly.

Don't mention the heads up on LDN. Good luck with it! I'll make a group for it (or you can yourself if you're inclined). Would good to hear about your results with it there or in the forums.

Not holding off of the faecal transplant to see what happens to me first are ya? ;-)
9 years ago
jamison
jamison
Heya,

Yesterday I had an appointment with both Dr Pouria and Dr Myhill. Both thought the idea of a faecal transplant was a sensible idea although both felt it was important to exercise caution and find a healthy donor. Dr Pouria mentioned she thought this would be a very difficult task because in all the hundreds of stool tests she has seen not one has been completely healthy or 'normal'. I ,however, think if you can replace extremely abnormal gut flora with only very slightly abnormal gut flora that has got to be a good thing providing no other infections are passed along too...Both wanted me to carry out the metametrix comprehensive stool analysis with parasitology so I will be doing that. I will post the results here when I get them back which should be in several weeks time. If it still looks like a faecal transplant is going to be the best way of getting the beneficial bacteria in the gut up then I will go for it...

In the meantime I'm going to give LDN a try so thanks again for the heads up on that Maff!!
9 years ago
Maff
Maff
Hey,

It definitely would be an interesting 'experiment' and you never know we may even be able to publish the results if we all use the same test and treatment procedure! Jamison are you planning on using the Metametrix GI Effects Profile as I am or a CDSA from Genova, Doctor's Laboratory or some other lab?

Very good suggestions about testing our donors at the same time and perhaps asking them to take an antiparasitic. You mention the potential for a donor to pass on something their immune systems have been able to tolerate whereas that something might cause problems for us...this is probably what worries me most about going through with this. I guess the best we can do is take every precaution as you suggest.

There is the facility for us to post images here in this group so I hope you'll join me and post before and after stool testing results. Will be very interesting to compare between ourselves!

On the subject of your recent test results I agree with your reasoning. It might be that you could encourage the growth of SCFA-producing colonic bacteria with a high prebiotic diet and perhaps prebiotic supplements. The question is do you have enough of these microbes for that to do any good? If you have a severe deficiency of these microbes maybe HPI is still the best option...
9 years ago
jamison
jamison
Hi all,

Yes definitely agree that would be sensible. In the name of science, it would be very interesting to see before and after test results. I am also going to put my donor through a CDSA. I think it may be a good idea for the donor to take some ivermectin or some other anti parasitic agent. Most of us harbour parasites of one kind or another but what other people's immune system may be able to tolerate, ours may not. I think it would be prudent to do this before the donor undergoes the CDSA. That way, you won't pay £250+ for a test, find they have a parasite, treat them and then have to re-test. This strikes me as a sensible way to save money and time. What do you guys think?

Also on the subject of tests, I've just received a copy of a gut permeability profile which was normal and showed I don't have 'leaky gut'. I have also had other recent results from Biolab including a gut fermentation test and a SIBO hydrogen methane breath test. These all came back normal too indicating that my gut is not as bad as I assumed or it has been in the past. The only anomaly was that 0 fermentation in the colon 'indicates lack or normal colonic bacteria'. I think on balance this strengthens the case for an HPI. But I can't help thinking that if the rest of my gut is in reasonable shape than maybe the colon will normalise itself with a good diet and lots of probiotics. Maybe there is no need for an HPI? I would be interested to hear your thoughts...

9 years ago

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