Another CFS/HPI Discussion
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?
I think my doctor had assumed my dysbiosis was treated and/or did not place much importance on it...
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.
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.
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...
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!
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!
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!
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.
Activated charcoal obviously works for some people however, as you have seen yourself!
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!
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.
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!
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."
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...
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.
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!
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.
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?
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!
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
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:
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.
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?
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.
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!
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.
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?
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!
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