Discussion in 'General Treatment' started by Live And Let Die, Feb 15, 2011.
Please share experiences good and bad.
At my first meeting with KDM in November, I mentioned that I had had an appendectomy but maintained that I had never had acute appendicitis. (I had suffered for a long time with a low-grade fever and a pain on my right side. After several months it was decided that I had a rumbling appendix and it would be best to remove it because I was of child-bearing age at the time.) This struck a chord with KDM and he went on about how very many patients he has seen who have had their appendix removed needlessly. He sounded rather angry about it and said that Belgium has the world's highest rate of appendectomies. He said the appendix should never be removed unless very acute. He said that like the tonsils it is there for a purpose.
My GP said roughly the same thing. He said the appendix and tonsils help fight off infections. I've had both removed.
I read something online about probiotics and they said the appendix might be a storage place of good bacteria and when you don't have it, autoimmune disorders are a lot higher.
I had an inflammed appendix that had to come out when I was in my late teens, close to when my first Mono virus occured, so I'm sure it can't help CFS.
I took probiotics for a while, fell off that wagon. I think LDN has helped my digestion greatly! I think I have/had IBS.
If you want to try probiotics I really suggest that you buy a yogurt maker and make them at home. You get the yogurt fresh and the probiotic count is way higher than those you find in the stores.
Also buy only specific strains, ie those that are able to implant and colonise your gut, many strains cannot. They just put them in yogurt becos it makes the yogurt taste good. Also I notice that most pple with cfs have got gut dysbiosis in the large intestines and not the small intestines. You would need anerobic probiotics in the Bifidobacteria family for this purposes and the L. strains will have limited effect.
Me too - both removed. KDM put me on Mutaflor (probiotic), in between courses of antibiotics. I can't have yoghurt as I am highly lactose intolerant.
Can you refer me to where you read about autoimmune disorders and appendectomies?
I have found probiotics helpful with what i call dribble bum aka diarrhoea, lol. I think this is a sign of inflammation of the GI tract and probably reduces our ability to absorb nutrients. I dont think its the be all end all cure for cfs but it helps keep us healthy enough to help absorb nutrients and to fend of candida and other gut bugs and our overall immunity and well worth persuing. Good luck.
sacchromyce bouldarri(spelling???) is another probiotic/healthy yeast that can help fight candida and help with GI inflammation.
heaps, LOL dribble bum! I've got to add that to my phrases, right next to the all important "post wipe, wipe" or PWW. The PWW is worst if I drink beer the night before, then it's PWW's every half hour or hour.
just dont do a 'bum burp follow through', then u will need to PWW, lol. But yes the sacchromyce and other probiotics help.
I took probiotics, ate yoghurt for the first 10 year of having ME. There were no stomach symptoms with the disease for me for the first year or so. After that I started vomiting, could not digest foods I had commonly eaten before, had constipation and had a distended bloated stomach. The probiotics helped with these all but especially with the last part. Although it sounds horrible, the stomach problems were only a minor part of ME for me when compared to the viral symptoms and the PEM.
Then suddenly after all those years probiotics stopped having any effect on me. I think that it was the antibiotics and antidepressants that caused my stomach problems but I have no proof of this. No idea why probiotics stopped working (I've tried different ones), it was around the time of a bad sinus infection and powerful antibiotics so could be that.
(W)hy (T)he (F)ace is dribble bum ??? Becareful where you drip that. Fecal transplants are all the rage now.
Strangely, given the fact that I had constipation for years, then diarrhea for several years and now a few major food intolerances, you'd think that probiotics would have helped, but I have never experienced them doing so. I have mostly followed a healthy diet with a lot of vegetables, so maybe I have already gotten whatever benefit I could get from there. What generates this illness I used to believe was some kind of permanent damage or neurological damage, but now the horse I am backing is XMRV or its family of retroviruses.
vegetables are overated, everyone i know who has had cancer has eaten veges, they just dont taste good, brussel sprouts, yuk!!
Have u tried any medication for candida like nystatin which only enters the gut and kills yeast through the GI tract and some follow this up with a systemic antifungal like diflucan or nizoral, then they add probiotics after this to replenish all the good bugs. I found it helpful.
I find probiotics seem to help the IBS-like GI problems I get with ME/CFS. The probiotics in sauerkraut juice are like a miracle drug for mouth cankers.
I wouldn't say that probiotics are really a treatment for ME/CFS, but I figure that our compromised immune systems can use all the support they can get, plus I appreciate anything that helps relieve the nausea and diarrhea.
Another sauerkraut juice fan here )
Probiotic foods seem to help my digestion. I buy biokult and a couple of other probiotics as "starters" to culture vegetables, milk (into yogurt for my children), and young coconut water & flesh. Sarah Myhill's site even has a recipe for grow-your-own mutaflor. Might get around to that one day
Sometimes I tolerate them, sometimes I don't. Some brands I tolerate, some not. When I say don't tolerate what I mean is usually I get malaise, headaches, stuffed and runny sinuses, severe upper eyelid edema the following day. Culturelle was a disaaster. Custom Probiotics caps did nothing to control vaginal yeast infections. I find Renew Life Ultimate Flora the best for me. Maybe it's because the caps are enteric coated. I don't know. Been constipated since I was born. Rarely vomit or get diarrhea. But if I take antibiotics and don't take probios too I get a vaginal yeast infection. Sometimes I just get yeast infections even without taking antibiotics. Saccharomyces Bouillardii is another thing one may want to consider after Nystatin or fluconazole as those will kill your beneficial yeast, too.
Still have my tonsils and appendix. Been sick since I was 23 and now I'm 57. I've even read a doctor theorizing tonsils can harbor low level infections. So find a theory and I'm sure you can find patients whose case supposedly validates that theory. Take your pick!
When you take probiotics, does anybody make sure that they are taking mainly Bifidum or Bifidobacteria strains ? Those are the ones that can implant and colonise the large intestines only. They are indigeneous to the human race. In other words pple all over the world will have these same strains, only different subspecies.
I find that L. strains do nothing in general for pple with cfs, gut dysboisis, etc. Similiarly, Kombucha and Kefir are NOT probiotics. They cannot possibly be because their optimal reproduction temperature is room temperature. You want strains that grow at BODY TEMPERATURE.
Btw illsince1977, if you look at the Renew life formula and you will notice that the proportion of B. strains in that formula is very very high. Similiarly if you took the B. strain high formulas from customprobiotics, they will work. I am surprised Culturelle did not work for you though, becos of all the L. strains that is one of the best. There might be a detox process involved with that in you.
Personally I do not understand the concept of using friendly yeast to kill yeast. It just sounds dumb. Whats the point ? In the end your indigenous gut flora will still have to work to wipe out the friendly yeast or minimise its numbers it if is not in line with your body's homeostasis. I did not take that route for recovery myself.
You can also try a Google Site Search
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