Rheumatic fever?

[Not dead yet!]

[article=https://www.mayoclinic.org/diseases-conditions/rheumatic-fever/symptoms-causes/syc-20354588]The link between strep infection and rheumatic fever isn't clear, but it appears that the bacterium tricks the immune system. The strep bacterium contains a protein similar to one found in certain tissues of the body. So immune system cells that would normally target the bacterium may treat the body's own tissues as if they were infectious agents — particularly tissues of the heart, joints, skin and central nervous system. This immune system reaction results in inflammation.Type your article here[/article]

A few MONTHS?! So familiar...

[article]Your doctor might recommend bed rest for your child and ask you to restrict his or her activities until inflammation, pain and other symptoms have improved. If inflammation is in heart tissues, your child might need strict bed rest for a few weeks to a few months, depending on the degree of inflammation.[/article]

That's a very interesting connection. I looked it up because I am having trouble even looking at my computer screen atm, and was watching TV, some old movie had a fellow in bed saying "Rheumatic fever, it's left my heart a bit dicky." Hmm...

Several people have asked if I had any sore throats, over the years. I haven't, but I had laryngitis 2-6 times a year every year, until I completely crashed and now I haven't had any laryngitis in years. Maybe once in 5 years.

Funny how an old movie can give me an explanation that fits, but when I talk to a MD, they act like I'm speaking in tongues. They don't even bother to check.

 

[dejurgen]

From wikipedia(streptococcus) I get:

"However, many streptococcal species are not pathogenic, and form part of the commensal human microbiota of the mouth, skin, intestine, and upper respiratory tract."

So many strains are pathogenic, but some live in/on nearly every human being.

That does resemble what I wrote about this inocent Acné bacteria in the papaya topic on the gut forum:

• In some people generally very innocent bacteria seem able to wreak havoc.
• As they are so common and thought to be innocent, test are made to not let them pop up because it would give far too many false possitives.
• That Acné bacteria gives a very broad immune reaction as is seen in ME and very hard to fight off; maybe potential innocent Streps going rogue do the same.
• Both contain strong enzymes able to do damage to tissue.

If you would have got such thing, you'd be largely on your own I guess.

 

[dejurgen]

Maybe this info on vinegar might be of use to you https://en.wikipedia.org/wiki/Acetic_acid:

"Acetic acid is an effective antiseptic when used as a 1% solution, with broad spectrum of activity against streptococci, staphylococci, pseudomonas, enterococci and others.[52][53][54] It may be used to treat skin infections caused by pseudomonas strains resistant to typical antibiotics."

May work in the mouth, throat and stomach as well?

 

[Not dead yet!]

Thanks dejurgen! I often get frustrated that what was once commonplace enough to be memorialized in a TV show is now treated so differently. I suspect that something like Rheumatic fever is happening, but I can't say for sure which germ is doing it. It did help me to frame it as something like RF because it made me realize the importance of pacing and bed rest. Even though it's been happening for a while, I still feel like I"m new to this because so many others have been suffering much longer than me. I still get restless and overdo, or just frustrated with not being well and rebel against pacing.

My doctor just decided to try xifaxan for me because he describes my symptoms (the GI ones anyway) as "diverticulitis" which confused me at first, but a recent article cleared it up. https://www.ncbi.nlm.nih.gov/pubmed/29844795 So far so good, I actually slept through half the night on the first day and woke up without so many aches.

I have to admit that any time he's taken an action to address diverticulitis for me, it has helped. It wasn't on my radar though.

 

[dejurgen]

Hi Not dead yet!,


I've been looking at the Wikipedia pages of Diverticulitis and Diverticulosis more then once too. It kind of rings a bell but I moved on so far because I dislike the look of that picture (I know, poor reason to not consider it deeper but sometimes enough is enough) and because I had a colonoscopy about 4 years ago and the doctor did not mention it. But I was still a lot better then compared to now. But I already had many of the symptoms described with it.

From the Wikipedia page of Diverticulitis "There may also be nausea; and diarrhea or constipation.[1] Fever or blood in the stool suggests a complication.[1] Repeated attacks may occur." I only don't have fever out of these near ever. For a healthy patient that would be enough to take it serious, but as an ME patient having so often been disappointed by doctors and been answered "been consulting doctor Google?" one sorta gives up from time to time.

From Wikipedia I also find "stage 2b: diverticulitis with abscess greater than one centimeter" interesting. Not even the worst phase and abscess with diameter greater than one centimeter? Remark the plural as in more then one such big abscess. That's *plenty* of volume of bacteria in the intestine.

When I read such thing, I always think: it's not like a on or off situation. Not like having one or two such big abscess or none at all. It's like cancer: every human has plenty of microscopic tumors that come and go. Only when one grows out of control it becomes problematic cancer.

So reading "stage 2b: diverticulitis with abscess greater than one centimeter" probably means something like: 4 abscess greater than 1 centimeter, 20 abscess greater than 5 millimeter, 200 abscess greater than 2 millimeter, 2000 abscess greater than half a millimeter...

Knowing that the gut is *very* thin (think that traditional sausage has a pig gut as envelope and that is very thin) that would mean that the gut is littered with small and less small pockets of bacterial infection. Just imagine an abscess with a diameter of greater then 1 centimeter on top of a sausage, with the white/yellow pus being held between two even tinier split layers of the pigs gut. Bad for appetite!

And that image of thousands of small pockets of bacterial infection splitting up the layers of our gut and being intermixed with a very good bloodstream towards the rest of the body is alike the image I tried to sketch in 2 comments ago and more accurately in the papaya topic.

When people talk about ME and gut inflammation or problems I kinda always get the image of bacterial or mold overgrowth or bad bacteria growing upon the surface of the gut. And those have to be removed entirely if it's in the small gut as it is supposed to be free of bacteria or replaced by good bacteria if it's in the large gut. But bacteria splitting up the already very thin gut in plenty of layers is paradise for all sort of opportunistic pathogen.

With such superb access to the blood flow their effect is far, far worse then if they were just on the inner (the inner tube that is) surface of the gut. And if many of these bacteria are "commensual" or "very common to live on the skin or inner surface of mouth, throat without being problematic" then they will NOT be detected by any common medical test as near any person would test positive on them. Any such test fails commercialization. Worse, many of these "commensual" bacteria provoke a *very* broad immune reaction and are hard to fight by both the immune system and antibiotics. Even worse, some like Propionibacterium acnes have very potent enzymes breaking down cells (and potentially the BBB). Some Streps have all of these properties in a lesser extent too. And both are known (as in found by researchers, not common knowledge among doctors) to be able to colonize unlikely places such as the inside of the gut lining itself (rather then being on one side of the surface).

So we have potentially the combination of very commonly available pathogens (that most but not all people have no problems with), not a single effective blood test to detect them, a pathogen "splicing and dicing" the gut filling it with millions of bacteria and other pathogen filled cracks, superb "absorption" of these pathogens and their toxins and destructive enzymes by the blood stream and a very broad but ineffective immune response to it.

Sounds like ME with its massive immune reaction against seemingly nothing specific and "ME resembles most a sort of chronic sepsis" written all over it IMO.

Note: did you try the papaya approach yet? I think it acts against this type of situation in a slow manner but with few side effects. Compared to the status quo two weeks was more then convincing to me. I don't want to push this approach but if someone tried and it didn't work I would appreciate the response too;-). If you'd consider to try it may help to wait until the antibiotics approach doesn't interfere observation.

 

[dejurgen]

I think I already know why my colonoscopy didn't reveal diverticula or such pockets: as long as they are not inflamed they are fairly common from a certain age on.

So that is another "non-marker" not worth mentioning as long as they are not inflammed or infected. Probably even if they are infected but infection spots are small then it is not considered an infection just like a pimple with diameter less then 2 mm is just considered acne. Once it grows beyond 1 cm in diameter it might raise concern...

From Wikipedia(Diverticulosis), the so called harmless variant with gut pockets :
"It is common in Western countries with about half of those over the age of 60 in Canada and the United States affected.[4] Diverticula are uncommon before the age of 40, and increase in incidence beyond that age."
-> with reaching such numbers at higher age, not worth a diagnosis or telling people is it?

"Diverticular disease can present with painless rectal bleeding as bright red blood per rectum...However, it is estimated that 80% of these cases are self-limiting and require no specific therapy."
-> So no need to worry; 80% are safe so why worry about those other 20%? They'll survive.

"Infection of a diverticulum can result in diverticulitis. A recent study[11] found that it happens only about 4% of the time. That contradicts prevailing thinking that 10% to 25% of people with diverticulosis go on to develop diverticulitis....Tears in the colon leading to bleeding or perforations may occur... and peritonitis, abscess formation, retroperitoneal fibrosis, sepsis, and fistula formation are also possible occurrences. Rarely, an enterolith may form."

Gut perforation, abscess formation, fibrosis, sepsis... nothing worth taking care of is it? At 50% diverticulosis occurrence in western 60+ population and 4 to 25% of them getting some of these nasty symptoms one might expect to know many people with such diagnosis wouldn't one. Yet it's rare to hear from it and rare enough so that statistics range from 4 to 25%. Under-diagnosis and not taking it serious anyone?

 

[dejurgen]

So we have diverticulosis as a completely under-diagnosed condition. It developing into more severe diverticulitis seems to be under-diagnosed as well.

Then we have some strains of Streps (suspected Not Dead Yet!'s case), Propionibacterium acnes (suspected my case) and C Diff (suspected Tom's case, see https://www.healthrising.org/blog/2018/12/04/capillaries-microcirculation-chronic-fatigue-syndrome-me-cfs/#comment-841212).

I have to look into C Diff a bit more, but so far it seems all 3 of these have folowing properties:
* Are very common and most people have some/many of them around or in their body.
* That means that all commercial tests that indicate their presence are worthless because giving far to much false positives for infection.
* That means they slip through all standard medical tests.
* Are unfortunately harmful to a small group of people, research confirmed.
* Are colonizing places where they were long not believed to be ever present, including the gut cells themselves, abdominal wall, blather, spinal fluid...
* Produce (very) strong enzymes and toxins once they breach the skin / epithelial surface / mucous surface where they are supposed to live on.
* Produce a very broad immune response mobilizing near all lines of defense.
* Often have fair resistance against antibiotics.
-> If they colonize the gut lining itself rather then its surface they have all what is needed for creating strong sepsis and a strong and broad body wide immune response

Add to that that I'm working with Cort now on a fairly detailed model with many specific biochemical pathways how oxidative stress can and must block glycolysis and the Krebbs cycle and turns on the PPP in turbo. Part of that effort is identifying pathways that help reinforce this highly oxidative CDR-like situation.

=> Combine a common near non-diagnosed condition as diverticulosis.
=> Add another model of inflammation/infection then the current +1 cm abscess or nothing model but rather then total volume build an infection model on how much leaky paths and how much flow from those leaky paths can reach the blood stream. Sepsis after all does depend not on how big an abscess is but on how much pathogens enter the blood stream. When an abscess can reach diameters over 1 cm in diameter it's because the infection is sealed pretty well in its bubble. Granted, if it pops it will give a strong one time immune reaction. But being an engineer I can easily envision that the daily average flow of pathogens gets far worse with many small infections then with one big one.
=> Add that some pathogens are innocent for most people and evade tests.
=> Add the very broad immune response generating high continuous oxidative stress
=> Add that, according to my model, there are many feedback loops depleting the bodies capacity to keep it's ROS defenses if there is a long lasting immune response.
=> Add that, according to my model, depleted ROS defenses halt energy production to a near total stop.

=> IS THAT ME MODELED FOR A SPECIFIC SUBGROUP????

 

[Not dead yet!]

So we have potentially the combination of very commonly available pathogens (that most but not all people have no problems with), not a single effective blood test to detect them, a pathogen "splicing and dicing" the gut filling it with millions of bacteria and other pathogen filled cracks, superb "absorption" of these pathogens and their toxins and destructive enzymes by the blood stream and a very broad but ineffective immune response to it.

Sounds like ME with its massive immune reaction against seemingly nothing specific and "ME resembles most a sort of chronic sepsis" written all over it IMO.

Yeah I like what they're doing with the "cytokine fingerprint" for ME/CFS but I'm wondering if we're just moving our attention to something ubiquitous in order to avoid the obvious. Eventually, a cytokine fingerprint can lead back to a pathogenic discovery, but how many people will be ill by that time? Do we have that much time as a society to have so many adults who are NOT boomers sick and not working, or not working effectively? Plus the boomers getting older? It seems shortsighted to play "let's dance around the empty middle." Obviously our assumptions about commensal bacteria are incorrect. And double obviously because there's always a weasel word when they say it... they always say "commensal bacteria are USUALLY benign." OK, so give me a rundown of the times when it's not. They never do, just say "immune dysfunction" as if it's testable and treatable.

Looked at from that direction, it's helpful to have cytokine research, but the focus should be on quickly providing a test any doctor can use, not just a specialist. And more new antibiotics like xifaxan (a targeted gut dysbiosis antibiotic, which I'm taking now and it's really helping).

Plus GPs/family doctors are losing respect because 1. Their own training system doesn't respect them -- apprenticeship? Really? What is this, hairdressing, plumbing, electrician? Even schoolteachers have training credits and not apprenticeship. 2. Insurers don't respect them. 3. Hospitals are offering jobs to foreigners with medical degrees, for one thing because they have to be more conformist in their practice and it's easier to control a foreign doc who doesn't want to lose their job because it means they have to go home.

Contrast with; My GP diagnosed diverticulitis (he's something of a specialist in geriatric care so he's not faking it, he's seen it lots of times), and prescribed xifaxan, and it worked. Most things he has prescribed worked and were the sort of thing only a concierge doctor can do in the US. A new, and possibly foreign, doctor would severely hesitate before doing that, they'd send you to a specialist who has no clue about your history and starts from square 1 with all the assumptions that you're probably just stressed out. Then if you see the specialist 10 times, they might decide you're not faking it and will move a muscle. But only one muscle... maybe you're still faking and very patient.

OK I'm hyperbolizing now, but it's happened to me several times. My previous doctor was very professional, but young, the son of a famous local doc. I kept telling him I felt like I was getting recurring peritonitis, based on what symptoms fit me best. He didn't dare to help me. It's tragic. His colleague, older, dismissed me while my gallbladder was severely infected and about to burst. Her PA sent me for an ultrasound, and within hours I was in a hospital being prepped for surgery. The fear of making a mistake is leading to mistakes.

A doctor with courage is a gem.