Hi Mark,
Sorry about the delay of getting back to you, but I have some more to update you on ..... this post will probably take a while but I hope it is worth it. .....
This specifically relates to the discussions and treatment that I have had with the infectious disease specialist that has been listening to my theory and treating me accordingly. I do need to point out however Mark that after so long, it is highly unlikely that oral antibiotics will resolve our prostate issues .... BUT, never say die. There is a clinic in China that direct injects abx into the prostate, and there is also phage therapy, which I will now be pursuing.
The basis of the undetectable infection can be seen on teeth. Biofilm forming bacteria form on the teeth in the presence of sugar and minerals resulting in calcification .... this causes tooth decay and gum disease .... They produce organic acids and biotoxins which my research has shown is the root cause of our condition. Personally, I do not understand how this has slipped under the medical professions radar, but it has .... and we are the result of it .... Systemic biofilms, or microscopic tartar spread throughout the body ....
The prostate is a very difficult one, so I will deal with that seperately, and as the good doctor said to me, we can't use a toothbrush to get the tartar out of the prostate ....
I have done something really interesting, the last week of my clarithromycin treatment I started colon flushes with Kefir using a turkey baster ....... I am happy to say that the results have been somewhat dramatic. Before I go to bed I lay on my left side and use the turkey baster to place about 150mls of live kefir milk made with granules up my backside. I thought I was feeling pretty good BUT, now I feel a whole heap better. My total concern with FMT is the risk of a serious infection slipping through the safety net .... I reckon that this is a good alternative so fingers crossed ...
The other development is my doctor decided to put me on a prophylactic dose of azithromycin indefinitely, with reviews every 6 months. This is a treatment protocol that I have never heard nor seen anywhere. Basically, it is 250mg of azithromycin 3 x per week. What it does is protects me from any of these nasties returning and also the low dose is a biofilm buster, so over a period (years even) the biofilms will be broken down. This may even work on our prostate problem...... only time will tell.
These bacteria form biofilms and follow the sugar trail .... SIBO will always return because they grow along the sugar trail coming down from the mouth .... They enter the lymphatic system and live off the glucose circulating around the body. They enter the vagina and live off the glucose pumped out of the cervix between ovulation and menstruation, they enter the prostate and find an abundance of sugar and thrive there too.
There is something that i have learnt that is significant. Low e-coli levels in stool samples = severe muscle pain .... something for us all to think about.
So this is how I would 'cure' myself if I found out today I had CFS and was pretty sure it related to gram positive biofilms:
Cease all simple sugars and all probiotic supplements and reduce fibre intake (fibre also can irritate the gut)
xylitol gum
Half a teaspoon of powdered kelp per day (feed the e-coli)
CoQ10 supplements
Magnesium Chelate supplements
Bicarbonate of soda 1tsp in water 3 x per day
Bone broth etc. to fix gut
Oral Vancomycin 250mg 3 x per day + Augmentin Duo Forte 2 x per day for 28 days
This clears out the bad guys in the gut
Replace the gut flora with kefir, 100 to 200 mls directly poured in the rectum every day for a week, and drink after every meal.
The next step I would use is to clear out the lymphatic system and the mucous membranes
Clarithromycin/erythromycin + doxycyclene for 3 to 6 months (I have just completed this although the doxy only lasted for 3 months)
xylitol gum
Half a teaspoon of powdered kelp per day (feed the e-coli)
CoQ10 supplements
Magnesium Chelate supplements
Bicarbonate of soda 1tsp in water 3 x per day
Bone broth etc. to keep gut fixed
Digestive enzymes
Kefir rectum flushes, Oral kefir, sauerkraut, fermented vegetables, avoid simple sugars, wheat and dairy..... replace the lost bad bacteria with good ones.
The ongoing prophylactic treatment of 250mg of azithromycin 3 times per week for a currently undetermined period.
The alternative is IV antibiotics, BUT it is highly unlikely that this will ever happen here in Australia at least.
Why can't we detect this infection, because the damage is done at the cellular level, it is not in the blood. That is why there are no consistent 'biomarkers' ..... According to my doctor, cellular biopsy's need to be taken and the samples need to be snapped frozen in liquid nitrogen within a few seconds and then shipped to a specialized lab for analysis at huge expense. My doctor would not even entertain the idea.
The only other thing I know is that it can be contagious and that I believe a lot of 'mental health' issues which are becoming prevelant in our society are mild forms of this condition. But this is a whole new argument and my partner is a mental health nurse who still believes this is all in our heads ......
A genetic disposition .... I will argue in a lot of cases that it is actually more to do with bacterial transfer through the generations .......
I believe that the undetectable infection is curable, but some of the damage done is not reversible ........
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