Discussion in 'General ME/CFS Discussion' started by Elph68, Nov 30, 2013.
Hi @Tommy73, what you state is true ..... but it is a very narrow although important argument.
Thanks for answering. Im dealing with strep overgrowth (possibly faecalis ) and my main symptoms are always cold, tired, brain fog... and mainly digestive issues due to the lactic acid. I cannot tolerate any sugar at all (even xylitol) (I don't have candida). However I do well on complex carbs but they give some heartburn (lactic acid coming from fermentation). So you think carbs and starches should aso be avoided as simles sugars to kill the strep, or could be they eaten? . In my case the overgrowth is in the upper small bowel so Im thinking if maybe the complex carbs can pass without feeding the strep, cause it takes more time for them to get digested.. Im at university and studying without carbs or sugars is really difficult. My brain claims for glucose!.
Also ..What about taking the bicarb at the beginning of the meal , could this create a barrier to not allow the strep feeding in the food?.
P.D: Haven´t you considered the use of displacing probiotics like mutaflor (E.coli nissle 1917) in such high doses(even 1x or 20x) to get the strep out by competition and therefore not needing to use antibiotics?
Hi again Elph.
sorry for asking again about dietary concerns but in my case (several strep bowel overgrowth) seems key to manage it...You say no simple sugars (monosaccharides and disaccharides). What about oligosaccharides like galactoligosaccharides and Xyyloligosaccharides?.
If the sugars are no-fermenting then they are ok ...... you may need to do some private research on those .......
xylitol is non-fermenting ..... stevia is non fermenting ....
Hi, I found that oregano oil killed the heartburn in me ..... 10 drops 3x per day in water or even better are the capsules.
I have been on this anti-staph medication now for 60 days ..... This is the best I have felt on any medication. I have been back in the gym and I am now back at the same point, using the same weights I was 5 years ago before this started.
I am now totally convinced that staphylococcus slime has been the underlying cause of my CFS. Staphylococcus slime causes the immune system to dysfunction which allows other 'opportunistic' bacteria to get out of balance. Poor gut biodiversity is a contributor to the condition
Coagulese Negative Staphylococcus (CoNS) is one of the most abundant bacteria on our body and is considered to be innocuous but 20% of species produce slime which is made of the same polysaccharides as Staph Aureus. CoNS are considered normal flora because they are non-pathogenic BUT the immune system sees the slime as more of an allergen. Again it relates to the statement I keep making, CFS seems to be about different bacteria acting in similar ways ......
It seems that Staph Slime could be the biggest cause of CFS ...... And I reckon it is up peoples noses and in the uro-genital tract.
@Elph68 is this tbe same thing as marcons?
elph68..what is this anti staff medication?
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The disease is likely to be caused by man-made viruses, vaccine failures
Hi @knackers323 , marcons can produce staph slime ....... so yes ..... cheers.
Hi @roonie , a combination of rifampicin and Fucsidic Acid ....
"......The restrictions for rifampicin do not include the treatment of methicillin-resistant Staphylococcus aureus (MRSA). For infections which can be managed with oral antibiotics, rifampicin is often given with fusidic acid. ... The purpose of using two antibiotics is to try to prevent further resistance"
This is a very narrow spectrum treatment ...... But the results have been outstanding
So in a nutshell,
It seems the most likely cause of CFS immune system dysfunction is colonisation with slime producing strains of Staphlyococcus which includes Staphlyococcus Aureus (MSSA/MRSA) and Coagulese Negative Staphylococcus (such as Staphlyococcus eperdidimis) which can also be MARCoNS.
The immune system activation from this slime is more like an allergy than an infection .......
The most likely effective treatment for CFS would then be an anti staph vaccine ..... it seems there are some in the pipeline. Does anybody know if there are any actually in the market??
Poor microbiome biodiversity is also a factor particularly low levels of e-coli.
I will be asking my infectious disease specialist for assistance in entering a trial or obtaining a course of a vaccine at my next visit.
The treatment that I have been on for the last 3 months has finished today and even though I feel great, time will tell if it is sustainable .....
elph68..i wish you luck in your holding of current health. I just want to know one thing. How the heck did you learn all this stuff....do you have a background in some form of this medical jargon. I suppose if i was not so sick i could MAYBE remember 1/4 of what you speak. lol You have been great inspiration to if not all of us..to me. I too go on abx but not for the length you do.
Hey @roonie, I don't have a medical background, I am a research social scientist who has studied the spread of infectious diseases in the community.
My mind was a mess when this first started also and what has kept me going is the fact that the medical people here basically called me a fruit loop .....
I am not going to say there is an underlying conspiracy from the drug companies ..... all the supplements, potions, injections etc. being peddled by the snake oil sales people are keeping them rich and us broke ..... there is no money in curing this, but there is BIG money in treating symptoms ......
I am totally obliterating my system with probiotics now ...... hopefully that will keep the staph from re-establishing in any great numbers ...... only time will tell
Yes, there is a long thread about it on PR here. Prof. Gottfries who was former head of Gottfries Clinic kept his CFS/ME in check for decades by using this type of vaccine once a month. Unfortunately the original vaccine is no longer produced, and the alternatives people have tested here have been with mostly disappointing results.
I believe that is because I don't see anybody talking about Coagulese Negative Staphylococcus (staph eperdidimis) and it seems that the vaccines are aimed at Staph Aureus only ..... Staphypan targeted both Staph Aureus and Staph Eperdidimis and these are the 2 that produce staph slime .......
I have figured that the thought of Staph Eperdidimis causing CFS totally puts the medical profession offside and is way too much of a brain stretch as they are told that this bacteria is basically harmless ..... It is also one of the most common bacteria found on our skin ....... but only 20% of isolates produce slime ...... so when the slime producing strains get in the mucosa, that is when the problems occur .....
i am one of a few that have had a reversal of this only to fall backwards. I had a reversal by starving off something by diet....actually lack of diet...fasting. i stopped eating for 5 days while in hospital for severe back pain. I got shit from the nutritionalist for not eating so i began to eat again and my immune system all began to work properly again..i had no back pain...i got out of that hospital bed and left under my own power..with zero back pain. I got back home and in one week i was back to my old self again. That was back in 1993 and ive been stuck ever since...my immune system is all jammbed up...with what i dont know.
I do know that when i fell back apart that big lumps developed under my skin all over my body. i litterally felt the contents of my gut leak into the rest of my body...every part of my body...even my joints...this is a death sentence and nobody seems to listen or give a dam here in canada. I AM CONVINCED..SOMEBODY..SOMEWHERE ...KNOWS SOMETHING OR/AND IS HIDING SOMETHING...THIS HAS BEEN GOING ON WAY TO MANY YEARS WITH NO ANSWERS.
Interesting story. It might actually not be anything that you starved off, as some time ago there was a rather big discovery made that fasting is able to regenerate your immune system (source). I was very interested in this approach and gave it a go a few years ago. Unfortunately I started experiencing bad side effects from this type of water fast about 24 hours in, ended up with palpitations and feeling too weak to do anything, so I had to quit the experiment after about 40 hours. For this type of fasting to work, I guess you need to do water only fast and probably repeat it periodically to maintain the effects, which is too impractical for me at the moment.
JES ....this infection theory by vanelzakker has me intrigued because there are so many cases of cfs that are cured. is it possible then that the body can cure itself of infection by itself or by diet alone without the use of abx. I had an immunologist that was a very kind and compassionate doc. He kept saying to me to stay on my diet and that this all had to do with the nose and frontal part of the brain which would be in line with vanelzakker (spelling?) theory of infection of the vagus nerve. I do have what feels like a permanent sinus infection and lots of nasal problems.
I left something out about my hospital episode. Leading up to the hospital episode ...i was having waxing waning symptoms for many many years..i am the slow progressive cfs type. So...just before the hospital episode, i, like most, had a chemical overexposure (like the gulf war people did) I was redoeing my hardwood floors and back then the stuff they sold was very toxic (benzene, toluene). it was this overexposure of these chemicals that pushed my immune system into fight mode...AND WHAT A FIGHT. I believe its what they call the cytokine storm
so what i believed happened was i had an infection that was slowly growing in my for many many years (H pylori is a slow growing infection) then the overexposure from the chemicals triggered the immune system to try getting rid of the " infection"
What i would like to know from a lot of you people is did this all happen to you in a similar manner or at least did we all have the immune response/fight that went on seemingly forever. Mine was fight..fight...fight...rest...fight ...fight ...fight..rest.. for many many months and years...my tank is now empty...i have no fight left.
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