Another CFS/HPI Discussion

Discussion started by SB1108 6 years ago

 

I’ve been suffering from IBS for ten years and CFS for about two years.  Similar to Maff - I’ve been eating Paleo for about a year with only moderate improvement in my symptoms.  Also, my gastroenterologist believes that my symptoms are caused by SIBO.  As a result, I took Rifaximin for two weeks, which resulted in candida.  I have the candida under control but the Rifaximin was not successful and I’m not willing to try it again because candida was a nightmare.

Probiotics offer huge improvements in my symptoms on a short-term basis however, after about two weeks they lose their effectiveness.  So I have to rotate them frequently (which becomes confusing and expensive).  I am always trying to find a new one - sometimes they work and sometimes they don’t.  When I find one that works – my life is 99% better.  But it’s an exhausting search.  I’ve determined that Lactobacillus is the most beneficial probiotic through both trail-and-error and the results of my Comprehensive Digestive Stool Analysis (CDSA), which indicated no growth of Lactobacillus.

I’ve reviewed the Probiotic Therapy Research Centre’s website/references, which indicate that IBS is an infection of the bowel flora with a 'yet-to-be-described' clostridial bacterium. They state that a course of antibiotics can dramatically improve the symptoms but is unable to cure the infection except on rare occasions. In addition, IBS can be reversed to normality through an HPI http://probiotictherapy.com.au/pages/references.html). In addition to my CDSA, my doctor performed an Organic Acids Test, which indicated moderate clostridia markers.  If you agree that SIBO is the result of an infection from a ‘yet-to-be-described’ bacteria – it’s easy to see why HPI would seem like the next logical step toward treatment. In addition, research has found that flora of chronic fatigue patients are different than those of healthy individuals(http://www.ahmf.org/98access/98butt.html).  Further research has shown that the administration of bacteria can help regulate the composition of the intestinal flora in chronic fatigue patients http://www.cfids-cab.org/cfs-inform/Hypotheses/logan.etal03.pdf).

Similar to the previous posts on this website, I have planned to do the combination enema and the capsule approach. Maff – I thought your capsule approach was brilliant considering the new method being developed of Autologous Restoration of Gastrointestinal Flora (ARGF) http://www.bacteriotherapy.org/.  I do not see much of a difference with the exception of having the contents freeze dried… in fact, I think your approach is better than freeze-drying (seems to me that could potentially kill the necessary bacteria)?

I plan to use my mom as a donor but I’m having a difficult time getting someone to perform the necessary screening tests on her prior to the procedure.  It seems like my mom would be the best match since she is the one that previously gave me most of my bacteria anyway (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1379087/).

Maff – I’m really surprised that you have not had better results with the combination approach.  I was wondering if you had considered trying a different donor.  With all the research recently about how there are at least three ecosystems, each involving a multitude of bacteria species, in the human gut (http://www.nytimes.com/2011/04/21/science/21gut.html).

Aside from the risks associated with not having your donor properly screened, are you aware of any other potential HPI risks?

 

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Maff
Maff
Hi Jamison, I don't mind at all. Thanks for the feedback! It sounds like you are working with an excellent doctor there. I actually had misgivings about the second round of EPD before the horrible results as the official EPD instruction booklet does state not to give the shots until any gut dysbiosis has been satisfactorily treated. My experience illustrates just how seriously this advice should be taken!

I think my doctor had assumed my dysbiosis was treated and/or did not place much importance on it...
6 years ago
jamison
jamison
Hey guys,

Maff I hope you don't mind but I took the liberty of mentioning your bad experience with EPD (I didn't mention your name) to Dr Meuschel (my EPD doctor) before I started getting the shots myself. I was worried that EPD might go the wrong way with me too i.e. hypersensitise rather than desensitise and I wanted to tread very carefully... Anyway she was astounded that you were given EPD with gut dysbiosis and said that she never starts EPD unless the patient has at least a relatively clear gut indicated buy a full GI test and a gut fermentation profile. She estimated (not backed up by any figures) that something like two thirds of her patients responded positively to EPD whilst the rest showed no improvement. Only 5-8% she said responded negatively and this was usually gut related. This is just one doctor's opinion but she is very experienced in this field - EPD is all she does. Maybe if you were to get your gut cleared EPD might be worth revisiting at some point - although I understand if this idea doesn't appeal given your last horrific experience!

Tracy - if it is a matter of the end points shifting with you and you decide to go for EPD/LDA, it is important that there is a gap between the two treatments because they have been known to interact badly. I was told to wait at least 3 months. One doctor at an allergy clinic mentioned 6-9 months but I think this is overly cautious.

6 years ago
Tracy Mac
Tracy Mac
Thanks for the info. I know that Breakspeare don't have any Phenol or other stuff in their injections. Intuitively I just think my system is hypersensitive and my end points keep moving. I'm going to perservere for a little while with LDI with simpler cocktails (fewer items, items with low numbers & no supplements) and see how I go.
6 years ago
Maff
Maff
Hi guys,

Thanks for the discussion of diamine oxidase - I know what the enzyme does but didn't realise it was available as a supplement. I will definitely get myself some as have had symptoms of excessive histamine all my life. Be interesting to see what effects general lowering of histamine levels has (assuming the supplements work).

Just a caution on EPD Tracy. I tried it on two seperate occasions. The first time I had a total of 12 shots spaced a month apart and then 3 months....didn't notice any changes in my condition. A number of years later tried again with a different doctor and after the first shot it was plainly obvious it had made my gut fermentation problem much worse. This was confirmed after the second shot made things in that department worse still. After which I stopped the treatment! The effect was very obviously from the EPD shots.
6 years ago
Tracy Mac
Tracy Mac
Hi Jamison. Thanks for your feedback. I actually tried Diamine Oxidase (Histame) 2 years ago and it made zero difference. Perhaps its time to try it again now that I don't have the dysbiosis problem. Someone else has also recommended EPD so I'll look into that too. Tracy
6 years ago
jamison
jamison
Hi Tracy,

I've just read your most recent post on your powerofpoo blog. First off can I say: what a great blog! Thanks! I have been struggling with my own problems (CFS/ME) for quite a while now and your blog has been a real inspiration to keep on going...

I've also read what's below on this thread and it seems to be that histamine/mast cells is your main area of focus at the moment to try and continue to improve your health. I'm sure that you get a million people recommending new supplements but I can't help thinking this might be particularly relevant to your situation and therefore worth a mention:

Diamine oxidase - sold as either Histame in the U.S. or Daosin in Europe - is essentially the enzyme that breaks down histamine. This has worked wonders for me and works differently to anti histamines in the sense that it takes down overall histamine levels in the body (especially the gut) rather than merely blocking histamine receptor sites.

Anyway, good luck with your healing journey. For what its worth, I can relate to what you're going through with rapidly changing end points..horrible. I am based in the UK and had amazing results with neutralisation the first few days or so and then my end points shifted. I learnt in the clinic this was not an uncommon phenomena! In the end I had to go for EPD and this has been much more sustainable for me. Not like being on an allergy rollercoaster...
6 years ago
Tracy Mac
Tracy Mac
Let me know how you go with the H3 receptor antagonists. Its a new area and I think it could help a lot of us with our mental symptoms.
6 years ago
Maff
Maff
Great article Tracy, thanks for sharing! I hadn't written off the role of histamine completely in my illness, I know I produce too much as ever since I was a kid looking at the sun or bright light caused me to sneeze. Nowadays I am also sent into what are essentially hayfever symptom attacks if I don't get enough sleep also. I had only written them off in the sense that they don't block the die-off effects from antifungals....neither the older generation nor the newer non-drowsy ones.

The H3 receptor is something I haven't looked into so thanks for mentioning that. I will do some reading on H3 antagonists/anti-histamines and find out if it would be possible to have one prescribed by one of the many doctors I am in touch with...

Glad the older gen anti-histamines help you with various symptoms!

6 years ago
Tracy Mac
Tracy Mac
Apologies in advance if I have mentioned this before but I wouldn't write off the role of histamine too quickly. What I've learnt with my battle with histamine is that all anti-histamines 'aint equal'. It depends on which histamine receptors are impacting your condition. See this article on the mind-blowing role that histamine plays on our body
www.pharmacorama.com/en/Sections/… with the H1 anti-histamines, they are different. It's the first generation ones that work for me, the ones that cross the blood-brain barrier and make you sleepy. The second generation anti-histmaines don't have any affect because they don't access the brain. The H1 anti-histamine will get rid of my migraine and runny nose but not the excess stomach acid (H2) or mental symptoms (H3).

The role of H1 & H2 receptors in regulating conditions like runny nose, ezcema & stomach acid are well known. However H3 & H4 receptors regulate mental and immune function and are not not yet widely understood. I have read that H3 anit-histamines are available on script for condiitons such as Tourettes. So if you can get your hands on some of these it might help the mental symptoms. Please let me know if you do!
6 years ago
Maff
Maff
Great to hear you have had such success with the activated charcoal and derivatives and many thanks for posting all that information for others to learn from. I myself also research supplements and treatments heavily before trying them and always try to use the highest quality supplements possible. I am simply so sensitive to extra fungal toxins that even any being absorbed into my systemic circulation means treatment is doomed. I am all using AC but I don't think we can expect it to adsorb ALL die-off toxins.

Very interesting to read about the Herx reaction of your family member as that sounds like exactly the same as what happens to me. After reading your post I looked into Benadryl and unfortunately the active ingredient is different depending on your country...in the US it is diphenhydramine while in the UK it is acrivastine or cetirizine. I know for a fact my symptoms don't stem from excess histamine as I have taken various anti-histamines before with no effect. So it looks like I need to find a way of getting hold of diphenhydramine which has many other effects other than being an anti-histamine. Anyway, thank you so much, this is a great lead for me!
6 years ago
kjeanne
kjeanne
Oh, also, our family member's Herx reactions were what I would call "the crazies", not a feeling of being poisoned or flu-like, but More like hysteric, angry, hyper, wanting to laugh for no reason, aggressive. All this tapered off within about two weeks time. What helped was to give a child's version of Benadryl to counteract "the crazies". BUT seemed that certain probiotics still gave ther weird mental issues that just would not leave, that were different from the Herx "crazies" and came within an hour of dosing each time with these high quality hypoallergenic probiotics. BUT have just recently trialed minimal amounts of both Florastore (Sacc Boulardii) and also Culturelle with family member. Most of the times I gave the Benadryl about 15 minutes prior to dosing. So far no bad or weird reactions at all!
6 years ago
kjeanne
kjeanne
Sorry to hear that Maff. Just an FYI in regards to Activated Charcoal (AC). There are different qualities and grades of AC and also different derivatives of the originating sources of it ( i.e. coconut, bamboo, hardwood, bone char, etc...) If one has an Eosinophilic disorder, and/or food or environmental sensitivities/allergies, one would want to look for the best quality of AC, and also know from which it is derived. It was recommended to me to use a certain brand because of their known quality, and also a certain derivative due to food allergies. (THe ACs comes in a bulk powder form, mixing with water and drinking it straight black, or letting it sit and then drinking the "gray water" filtrate that then has no taste at all. and it has worked well for our family thus far, we use it mainly to get rid of an allergic reaction to various trialed medicines, and also if family member is in gastric distress (diarrhea, cramping). I have just trialed CharcoCaps, but not sure how effective, nor what it is derived from. I believe the one we use is the hardwood from www.buyactivatedcharcoal.com/… use the food grade hardwood version. So we either use ACP-1500 or the second version.They changed their label from when we bought long ago, so not sure which one. Was not expensive.
www.buyactivatedcharcoal.com/product/activated_charcoal_powder/hardwood/sa20/
http://www.buyactivatedcharcoal.com/…
, just having read the descriptiion of the AC derived from Bone Char, OMG!!!! A safe way to Chelate Heavy Metals thru topical polstices. ( though not sure about using as an internal intake by mouth)
This is different from regular AC. Read description: "Our BONE CHAR 2060-BC is a Natural Carbon Media produced from aged bones. It’s surface area and base material lends itself to the adsorption of a range of metals including mercury, lead, aluminum, manganese, silver as well as non-metals such as flouride and bromine. Bone char is different from activated carbon in that it contains both carbon surface area and hydroxyapatite lattice surface area. NSF Certified." www.buyactivatedcharcoal.com/…, here is the kind used in hospitals, very pure.
www.buyactivatedcharcoal.com/product/activated_charcoal_powder/norit/…]
6 years ago
Maff
Maff
Just read Bushi's post whch made me laugh...obviously Bushi hasn't realised that Tracy Mac is the author of The Power of Poo blog ha ha!
6 years ago
Maff
Maff
Thanks for the suggestion kjeanne. I read learned of activated charcoal being used in this way around a decade ago and in theory it sounded perfect so I gave it a go. Unfortunately it didn't work for me then and I am far more sensitive to die-off from antifungals now than I was then. It all depends on your die-off symptoms I would assume...I have never had a toxic feeling of being poisoned (flu-like symptoms) typical of a herx reaction...it's just that my brain and CNS are acutely sensitive to the additional fungal toxins released.

Activated charcoal obviously works for some people however, as you have seen yourself!
6 years ago
kjeanne
kjeanne
In terms of die-off, have any of you tried to see if activated charcoal helps u with this? It is recommended for yeast die-off when newly taking probiotics, etc... Have tried it within my own family for probiotic yeast die off, and allergic medicinal side-effects, and it works, or if a bug is going around and we need to slow/stop the diarrhea. So was wondering if could work the same with die-off symptoms from HPI (and antifungals for you Maff)? It adsorbs the toxins, and in theory shouldn't adsorb any new HPI probiotics as those shouldn't be toxins, so should only get the die-off toxins. you would need to take the activated charcoal two hours away from any supplements or meds so that it doesn't adsorb them, so I'd assume you would want to take it at least 2 hours away from any infusion done, as well (or hopefully way longer). So... Anybody with experience using this for HPI die-off?
6 years ago
Bushi
Bushi
Just scanned through these posts and noticed you mentioned frozen HPI. If you read the 'Power of Poo' blog, you'll see that she has had great success with freezing her donor's sample.

thepowerofpoo.blogspot.com/… a read, although I'm sure you're all aware of this site.
6 years ago
Tracy Mac
Tracy Mac
Hi SB. The conclusions I have drawn in respect of the things you mention are

a) Its a battle of the bugs. So yes, the action of the good bugs will subside between HPIs until the battle is won or equilibrium is reached. However you are the maestro of that battle and need to work out when to add more, or less. I know that with Mutaflor they recommend you give it a break occassionally to give the good bugs a chance to stand on their own, then start taking it again. I think it's the same with HPI. Its a fine line.

b) My theory/experience with frozen is that the bacteria do not survive, just the spores. Experiments on mice support this theory. That makes frozen an adequate but not equal alternative. Fresh is always best so I use it when I can, but I notice the difference.

c) I agree with Skye Curtis. I'm into my fourth month of infusions. But I wouldn't give up work for it because you put too much weight on the outcome which creates stress, which inevitably affects your chances of recovery. I have done both. For me, it has been much more effective to make it a part of my everyday life and give your battered gut as long as it needs to recover. Frozen has given me the flexibility to do this. It also means you don't wear out the goodwill of your donor as quickly.

It's only now that I'm realising that the success of each infusion directly correlates to how bad my nitric oxide (NO) symptoms are. For me NO is most easily measured by the presence of a migraine or not. It seems the NO is anti-microbial so that on a bad NO day the HPI does not 'take off' and grow. Indeed,one indicator of low bacterial activity in the gut is the color of the stool. On bad NO days, mine are a pale lemon color with almost no odor. It seems the NO kills off everything. Then when I can reduce the NO symptoms, the color and odour return. So I am learning there's not much point bothering with a HPI on a bad NO day.

My experiments with NO are only recent, having discovered the Martin Pall protocol over the Christmas break. But it fits my long list of symptoms exactly and also explains the setbacks I have had in getting the new intestinal flora established. Indeed the supplements with which I have had success are directly from of his protocol so I'm now trying the others he suggests. The trick is to unwind the NO cycle so that your bodybreaks the habit of thinking its in crisis. See the summary Maff has written elsewhere on this site on Martin Pall or go to the Tenth Paradigm website. I was glued to it for days and have ordered the book.

Sorry for the long post but you raise some interesting questions!
6 years ago
SB1108
SB1108
Just another update:

I've now completed a total of 9 infusions. I've only been able to do them on the weekends when I can meet my donor. I'm a little nervous about frozen... so I haven't done that yet. The last time I posted I commented that I had not experienced any die-off since the initial infusions however, the next day die off began (so I spoke to soon). It was not as severe as the first time. After this weekend, I am also having die off again (but again, less severe).

So my question to everyone is... Why do you think the die off subsides temporarily when I stop the infusions? Shouldn't the bacteria still be there, working? Do you think that the fact that I only do infusions on the weekends is hindering my progress and that the infection starts to grow back during the week when I am not doing infusions? I realize that these are all theoretical questions... but any input to help me understand this situation is greatly appreciated.

I've read comments about Sky Curtis and how she recommends a total of 4 months of infusions. I've been considering quitting my job for some time (or just going out on extended medical leave) to do these infusions... just because the results so far seem promising and I hate not to pursue the infusions if it seems to be doing SOMETHING beneficial. But I'm not a millionaire so maybe I should just get over the frozen fear and do that on the week days? I (for some reason) think that it would be possible for more harmful bacteria to make it through the freezing and back (just because the good bacteria are SOO delicate!)

Oh BTW - My bloating/gas/burping/etc symptom is much better now. The first 2-3 weeks... it was terrible, but things are improving with that symptom. Just need to fix the IBS and the CFS now.

Tracy - I had never even heard of the nitric oxide problem - Thanks for bringing that up... I need to research that more extensively.
6 years ago
Maff
Maff
Hey guys!

Just wanted to make an apperance and let you know how good it is to read about another positive experience with HPI. It sounds like it is making a real difference in your health SB, both in the gut and systemically. I am so happy for you!

I think your theory about your current digestive issues is quite likely. Any inflammatory process in the gut (e.g. leaky gut syndrome) involves damage to the intestinal mucosa and it is the cells here that manufacture and secrete the enzymes that complete the digestive process e.g. breaking down small peptides into amino acids and disaccharides into monosaccharides. Perm-a-vite by Allergy Research/Nutricology and a supplement called Seacure that is made from partially digested white fish protein are supplements for healing the gut that come highly recommended by the likes of Leo Galland MD.

Thanks for the link to that paper. Intestinal hyperpermeability is definitely a key factor in ME/CFS and I am not at all surprised by the symptomatic improvements seen in this study.

I hope the improvements continue!
6 years ago
Tracy Mac
Tracy Mac
Thanks, it's a great paper. I'm now pretty sure that which I have treated with Vitamin B & Sam-e is a nitric oxide problem. Of a long list of symptoms one of my worst is migraines, which are well known to be NO mediated. I thought for two years it was a histamine problem due to the fact that it responded well to anti-histamine. I now find out that anti-histamine will lower NO levels. It all makes sense. I'm embarking on the Martin Pall protocol to lower NO levels. The problem is that supplements are always hit and miss with me as my gut reacts badly to 50% of them. We shall see!
6 years ago
SB1108
SB1108
If you subscribe to the whole leaky gut/CFS theory... this is a good study:

www.ncbi.nlm.nih.gov/pubmed/… you type the title of the article in to google scholar... you can read the entire study however, for some reason... I'm not able to paste it here.

Title: "Normalization of leaky gut in chronic fatigue syndrome (CFS) is accompanied by a clinical improvement: effects of age, duration of illness and the translocation of LPS from gram-negative bacteria."
6 years ago
Tracy Mac
Tracy Mac
That's great news SB. Good news about the bowel improvement and finally getting some sleep. I think it just takes time, and with multiple perpetuating factors it takes multiple strategies to engineer recovery. I will be interested to hear how you are in 3 months time, and a years time.
6 years ago
SB1108
SB1108
Well I just wanted to update everyone on my progress. After the 3 infusions (and a week of SEVERE die-off), I decided to take a break for a while. So I ceased infusions for about 2 weeks. After the first week, the die-off symptoms eventually subsided and I noticed a change in my stool consistency. I had been experiencing IBS alternating C and D, but now the C is pretty much gone. In addition, I would definitely say that my stools are more formed but still not perfection! My anxiety and depression are pretty much gone (but during die-off... it was so severe - I seriously thought I was having a heart attack on several occasions).

Tracy - Based on your suggestion on the insomnia/GABA... I talked with my doctor and she recommended that I try this supplement called RelaxMax by Xymogen. Because of this supplement, I've been able to sleep through the entire night (which is a DRASTIC improvement for me)!

However, the bloating/gas/burping/etc... have become more prominent. My hypothesis is that: I now have the infection/dysbiosis under control but the damage done by the bad bacteria's endotoxins still remains, which is prohibiting my digestive enzymes from doing their job. I've seen several articles that discuss how digestive enzymes are not able to activate when the intestinal wall is severely damaged. Thus, when you eat, your food does not completely breakdown and the bacteria in your colon (whether good or bad) work to digest the remainder of the food, which results in excess gas.

I've been focusing on healing my leaky gut (with low carb diet, digestive enzymes, l-glutamine and zinc carnosine) for almost a year now (with moderate improvements). I plan to continue with my leaky gut protocol for as long as possible. Now that I have my infection/dysbiosis under control, maybe my leaky gut will actually have a chance to heal? I think I will increase my intake of digestive enzymes to reduce the amount of undigested food that reaches the bacteria and that will hopefully reduce the amount of gas they create.

I ended up doing 3 more infusions this weekend (this time with ZERO die off)! So I've completed a total of 6 infusions over a 3 week period. From what I've read, it can take several months to see the full benefit of the transplants - so it will be interesting to see what happens in the next several weeks/months. At this point, I can say that I THINK the transplant has been helpful. My CFS symptoms (muscle pain/brain fog/fatigue) remain but seem less severe. I hate to jinx myself though...
6 years ago
Tracy Mac
Tracy Mac
That's great news about the smell (as disgusting as is is to discuss). But that's also how I knew mine was working. The anti-biotics they gave me didn't help at all. It didn't touch the bad bugs and just killed more good bugs.
Maybe focus on managing the insomnia. I have recently discovered the whole GABA mechanism of the bowel, which is how sleeping tablets work. If you get some GABA or benzodiazepenes that might help.

6 years ago
SB1108
SB1108
Well today is the fourth day post (3 day) infusions and moderate/severe die-off still remains. I'm trying to stay positive but its challenging (especially since the die-off has magnified my insomnia x 100,000).

Tracy - I was thinking... maybe the die-off is correlated to the antibiotics prior to the procedure. Since you had been on pulsed antibiotic therapy prior to... maybe you had a clean slate to begin with, which prevented you from experiencing die-off? I think that the antibiotics I took several years ago are the reason I am in this situation to begin with so I was hesitant to take any more but... maybe that would have prevented the severe die-off that I am dealing with right now?

Interestingly enough, my poo still smells like the donors (even four days later). I debated on whether or not that would be TMI but... I think, based on our discussions here, that we are all beyond TMI haha! Regardless, I think that is even more of a sign that (like you said Tracy) the new bugs are still in there fighting. I think fighting is an appropriate word - I feel like there is a war going on in my stomach!
6 years ago
Tracy Mac
Tracy Mac
I have known of a person who experienced extreme die-off. She still benefitted from the HPI although has not fully recovered. I would think die-off would be the most likely explanation. Yes it is possible that your donor's flora might not be compatible, but that's kind of the idea with HPI i.e. we want the new bugs to come in and not be compatible with the old bugs. We want them to take over. The following article re human beings having 3 different types of flora is interesting if you haven't already seen it
www.nytimes.com/2011/04/21/science/… know what the nurse at the CDD (world leaders in HPI) would say if you called her, she would say to be patient, different people react differently and it just takes time. I think what you have done is wise, give it a break for a few days. The new bugs are still in there fighting.

I have come to the conclusion that some of us with long term conditions need to see HPI as a long term treatment. That's where I've been left. I'm a hell of lot healthier and happier since my successful HPI but I'm also dependent on regular top-ups. There is something in my gut going on that is anti-microbial and I'm trying to get to the bottom of it. At this point I'm pretty convinced its nitric oxide overproduction as all my symptoms lead down this path. Hopefully it will settle down over time.

Yes, we all need a doctor or nurse to ring up for supervision and advice! It is outrageous that we are left on our own to do backyard HPI. But at least we have this forum.

6 years ago
SB1108
SB1108
Maff - Thank you and Happy Holidays/Merry Christmas to you!

The past several days have definitely been different than I originally planned. I have taken a break from infusions the past two days. The die-off symptoms were severe and directly correlated to the timing of my infusions (within one-to-two hours) and I did not want to overburden my system with toxins. My die-off symptoms have improved since Friday but have not disappeared. I think the biggest indicator that it is die-off is my tongue - it looks disgusting! Initially, I think I just became worried because I had not heard that die-off was a possibility with the infusions and I was starting to think maybe I was doing more harm than good.

Regarding your question, I was actually able to retain the infusions without any medications... so I have not taken anything different. I have not been doing the 'top-down' approach... I was planning to just start with 'bottom-up' for now and see how that goes.

No change in my CFS/IBS but I think it is too early to tell about that for now. I will probably take a break from infusions for several more days and give my body time to recover. It is depressing that there are no doctors or nurses to call and make sure you are doing everything correctly. But... I guess these symptoms are a good sign? Die-off is SUPPOSED TO HAPPEN during these infusions and maybe it is actually working?!?!?!?! Right?
6 years ago
Maff
Maff
Have you been using anything to help you retain the infusions i.e. diarrhoea remedies such as Imodium (loperamide)? It was taking too much of these and making myself constipated that caused my flu-like symptoms rather than die-off. I have experienced exactly the same before as a result of constipation. Also taking Gaviscon before taking the capsules filled with donor stool (to reduce gastric acid) made me feel very nauseous. Those were the only symptoms I experienced during the 10 days of HPI. As I reported in my 'diary'...no typical die-off symptoms I experience with any other antimicrobial treatment.

I think we all become a bit hypersensitive about changes in symptoms when we have so many to begin with SB. I would try to give it a bit more time if you can or try to adjust things to make the treatment more tolerable. Good luck and Merry Christmas/Happy Holidays!
6 years ago
SB1108
SB1108
Quick question for everyone...
Is it reasonable to expect die-off from the infusions? Maff - I know you commented that you were surprised you didn't have any die-off but then you did have some flu-like symptoms on day 6 or 7.
I wasn't really expecting it because I've only read of one other person that had die-off (on the Curezone - Candida forums), and Dr. Borody does not note any side effects in any of his research. However, I believe I have been experiencing die-off since I started on Wednesday. Either that or things are not going well? I did the Vivonex as I previously noted but I (for some reason) did not experience any die off from that diet this time? The die off symptoms started the day of the infusions with fatigue and then progressing today to brain fog, bloating, diarrhea, etc.
Just kind of has me worried because I was not prepared for die-off. Then again, I have become a bit of a hypochondriac since this all started! haha
6 years ago
SB1108
SB1108
Maff - Thanks anyway... I also lost my journal access when I graduated and I really miss it!

I will start the transplants in about a week so I'm just trying to make sure I've done my homework prior to everything. Trying to make sure I didn't miss something/anything.

On 12/17, I am beginning an elemental diet (as a substitute for an antibiotic). Elemental diets have been shown to improve symptoms of a damaged gut wall (leaky gut) in Crohn's patients and have been shown to reduce bacterial overgrowth, especially SIBO:

www.bmj.com/highwire/filestream/284255/field_highwire_article_pdf/0.pdf

http://www.ncbi.nlm.nih.gov/pubmed/…
done the diet before (specifically, the brand is Vivonex) and it caused considerable die-off reactions so I am taking off work and using the time to relax and get well (hopefully).

So I will do the elemental diet for about 5 days and then I plan to start the transplants on 12/21... I will be trying different transplant approaches over a 14 day time period and then I'll assess my progress and decide how to proceed.
6 years ago
Maff
Maff
Sorry SB, I lost my access to journals after graduating from university last year. A huge pain as I have to go on abstracts, press releases and media reports unless an article is open access!

Does your search for this Borody paper mean you are still weighing things up or do you still plan to go ahead with HPI Christmas week?
6 years ago
SB1108
SB1108
Does anyone have access to this journal article:

Borody TJ, George L, Andrews PJ, Brandl S, Noonan S. Cole P, et al. Bowel flora alteration: A potential cure for inflammatory bowel disease and irritable bowel syndrome? Med J Aust 1989;150:604.

I have not been able to find a free version.
6 years ago
Tracy Mac
Tracy Mac
Fibre will help establish the new bacteria as long as it doesn't upset your gut. My experience is that introducing anything problematic, will upset the establishment of the flora. So I wouldn't recommend trying anything new or different for at least 3 months after the HPI. Having said that, I have found this very difficult to follow as a whole world of food beckons! But at least my donor is nearby to get back on track if need be.
6 years ago
Maff
Maff
Hi SB,

The diet question is a good one and I am inclined to agree with Tracy that if you have found a diet that works for you it would probably be best to remain on that for at least a few months either side of the HPI. Having said the best choice of diet is likely to depend greatly on the particular condition you have and what exactly is going on with your gut ecosystem. In some cases it may be best to go on a low carb/fibre diet prior to HPI and then switch to high fibre post-HPI to feed the new microbes from the donor. This is what the CDD recommend I believe but Tracy is the one who has had success with HPI so I will defer to her here!

I too have found colon hydrotherapy of little or no benefit but it might be a good idea the day before starting HPI to ensure a clean gut. Probably just go with what you feel on this...as Tracy said it may not be any better than standard bowel prep i.e. laxatives.

In answer to your final question, no I have not tried another donor. The whole thing was a big hassle for me and the lack of any results at all has caused me to rethink things a bit. I may come back to it with another donor but for now I am focusing on trying to tolerate antifungal therapy long-term.

Good luck with your HPI. I truly hope it brings you the Christmas present you are wishing for!
6 years ago
Tracy Mac
Tracy Mac
Regarding your questions SB, my experience as someone who suffers food intolerances is that diet is critical is helping settle the new bacteria. So yes, go on whatever diet works for you a few days beforehand and stay on it until at least 3 months afterwards. Other foods should only then be introduced slowly. This is easier said than done when you have been deprived of normal foods for so long. It's hard not to splurge and I have struggled with this.

Regarding the colonic cleansing, I don't see any greater benefit than just purging the gut with a colonoscopy-prep. The best cleanup for your gut will be some aggressive new bacteria.

I read the article on the three distinct different types of ecosystems found in the human gut. Very interesting. This explains why the CDD recommend that if your first donor doesn't work, find another. It also explains why their donor bank of three donors has been so successfful.

All the best with your HPI at Christmas. I look forward to hearing the results.
6 years ago
SB1108
SB1108
Tracy's blog really inspired me to begin my transplants soon. So I will be beginning the week of Christmas. A normal life would be the best Christmas present I could ever think of...
My donor (my Mom) has had all her tests completed and we just have to wait for one more to come back. As opposed to antibiotics, I plan to go on an elemental diet about a week prior. I've done the elemental diet before and it caused significant die-off symptoms, so I know its successful. Not sure if I should continue the elemental diet (or at least a semi-elemental diet) after I begin the infusions? Thoughts? I've also thought about colon hydrotherapy the day before I start the infusion. I've done that before and I'm kind of indifferent about it. Thoughts?
My donor has already begun freezing infusions for me to take back with me after I return home from Christmas (we live about 3 hours apart - so fresh wouldn't be a permanent option).

Maff - Have you tried another donor?
6 years ago
Maff
Maff
Hi Sb,

First of all thanks for the compliment about my capsule delivery method...just the best I could do without access to a clinic and an endoscope or colonoscope. I had to improvise! I do agree that it's logical to assume that fresh, live bacteria direct from a human donor would be better than the freeze-dried ARGF. Having said that ARGF must surely be a huge advance on the probiotics currently available commercially. Anyway, my capsule method was very easy to do and gave me no side-effects whatsoever. You can always refer to my discussion thread within this group if you need guidance...or just ask here and I'll reply as soon as I can.

Thanks for posting those links to studies relating to CFS and gut flora. Interesting that you have found Lactobacilli sp. to be the most helpful probiotics as the study I reported on in this news article found Lactobacillus casei (Shirota strain) helped the emotional symptoms of CFS patients - www.ei-resource.org/news/chronic-fatigue-syndrome-news/probiotics-help-emotional-symptoms-of-chronic-fatigue-syndrome/… unusual that each probiotic supplement you try works well but only for a short time. I wouldn't like to hazard a guess as to why that might be.

As Tracy has discussed the best choice of donor is an issue that hasn't really been resolved scientifically yet. My personal opinion is that if your mom is healthy with no GI issues herself then yes, she would be ideal as you'd be getting similar microflora to that which you had previously (although its composition changes with age). In my case my mum had always had IBS-like gut issues and also has CFS so she was the worst possible donor for me. It's something that has to be assessed on an individual basis.

As for risks...I would strongly recommend testing your donor if at all possible. Other than that the only risk really is that it is all a bit of a shot in the dark - altering your gut ecology drastically (assuming HPI does this) may not always have effects that are desirable. We're a bit like lab rats with this!

Anyway, I wish you the best of luck with everything and I hope you have better results to report than I did. Please come back and tell us about it or let us know if you need any help!
6 years ago
Tracy Mac
Tracy Mac
Having researched this extenstively for myself, the only risks I am aware of are the quality of donor. Some argue that family donors are better as their bacteria will be more similar to yours. Others argue family donors are worse, as weak or 'bad' bacteria are passed through families. I say that common sense is the best approach. See here for my tips on how to navigate the HPI decision. thepowerofpoo.blogspot.com/p/… for Maff not getting better results (and he could not have been more diligent) it seems clear that there are 'perpetuating factors' for many people and that the bacterial imbalance can be a symptom rather than a cause. Having tried both anti-biotics and HPI I prefer HPI as it doesn't leave a bushfire of devastation in your gut afterwards. I have met others on health forums that were left worse off after HPI but I question the quality of their donor. And if the worst that happens is you have to take another round of anti-biotics because the donor HPI didn't agree with you, at least you are just back to where you started.

Good luck!
6 years ago

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