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CFS is a Bacterial Infection

anciendaze

Senior Member
Messages
1,841
Just want to tell anyone curious about the subject of my post on this thread (#12) that it spawned a topic elsewhere which grew beyond my control.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Also, VSL#3 contains dairy and our bodies aren't designed to digest dairy. I

From the VSL website:

Can I take VSL#3® if I have an intolerance to dairy products?

Some dairy ingredients are used in the culture medium but are removed during fermentation and concentration. There might be trace amounts at very low levels and, for this reason, VSL#3® is not defined as a dairy-free product but as a non-dairy product. Evidence suggests that probiotics may be useful in the treatment of patients with lactose maldigestion and lactase deficiency. Recent studies have demonstrated that lactose is better digested from yogurt than from milk by lactase-deficient individuals and yogurt ingestion by these patients is paralleled by reduced symptoms. Many patients confirmed that their intolerance was greatly reduced with the use of VSL#3®. If you are lactose intolerant, you may wish to start with a very low intake of VSL#3® to see how you respond before increasing the amount.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I react to fem dophilous and I "think" other probiotics with dairy. It's been several years since
I experimented with this. I react to Kefir and yogurt of course.

I only get horrific huge dark marks around my eyes. I don't react to any dairy with digestive problems. I don't even get antibodies to dairy. My doc said I still couldn't have it.

Tc .. X
 

anciendaze

Senior Member
Messages
1,841
Recent activity indicates some people are just now reading a post I made long ago on this thread. I want to emphasize that this is not a for/against vote. My point is that even if you can treat a disease with a particular therapeutic agent it is no guarantee you have isolated the cause. One common OTC drug may be listed as an antihistamine or anti-nausea drug, while I know people who take it to sleep. "Indications" and "side-effects" can swap places on the package literature with no change in the chemical. This also happens with prescription medications, and most doctors are familiar with "off-label use".

A surprising example turned up when fluoxetine (Prozac) was found to inhibit an enterovirus. A case of "depression" successfully treated with a common antidepressant might have been a viral infection.

Research based on the idea of a single pathogen, or on major genetic determinants, has typically gone nowhere, both in ME/CFS and in many other chronic diseases. This doesn't mean we are looking at the "many mysterious causes" favored in other research which accomplishes little. I'm now considering ME/CFS as an inherited vulnerability to a fairly small set of pathogens which modulate immune response. Once the response is disturbed, common infections found in the gut or respiratory tract can penetrate a little deeper into the body's defenses, though without necessarily causing septicemia or viremia, where they show up in the blood. This provokes a much larger immune response than the one to the original pathogen, masking the cause. The original pathogen infects immune cells which participate in clonal expansion to fight these later infections. The hidden pathogen benefits from the distorted immune response.

Treating a variety of infections found active in patients may benefit them -- even if this is not the original cause.
 

merylg

Senior Member
Messages
841
Location
Sydney, NSW, Australia
I'm now considering ME/CFS as an inherited vulnerability to a fairly small set of pathogens which modulate immune response. Once the response is disturbed, common infections found in the gut or respiratory tract can penetrate a little deeper into the body's defenses, though without necessarily causing septicemia or viremia, where they show up in the blood. This provokes a much larger immune response than the one to the original pathogen, masking the cause. The original pathogen infects immune cells which participate in clonal expansion to fight these later infections. The hidden pathogen benefits from the distorted immune response.

Treating a variety of infections found active in patients may benefit them -- even if this is not the original cause.

Some things that come to mind...

Wikott-Aldrich Syndrome, an inherited mutation in WAS gene that codes for WASP a cell-signalling protein which regulates actin the stuctural element that allows cells to maintain shape or move. Proliferation, motility & cell adhesion are affected
=> eczema, bruising, bleeding due to decreased size and number of platelets, increased risk of infection due to dysfunction of Immune cells eg T cells, B cells, Dendritic cells, and NK cells. Blood cells & Immune cells are affected. Adhesion & motility of Immune cells is dysfunctional
.............=> autoimmune disorders & increased risk of lymphoma.
http://www.signaling-gateway.org/update/updates/200911/nrmicro2252.html

Listeria monocytogenes (which causes the often invasive bacterial infection Listeriosis ) mimics the WASProtein to hijack the cell's actin, in order to move from one host cell to another.

http://www.signaling-gateway.org/update/updates/200911/nrmicro2252.html



 

merylg

Senior Member
Messages
841
Location
Sydney, NSW, Australia
Myeloperoxidase Deficiency (genetic condition) manifesting as Immune Deficiency => increased susceptibility to Candida & other fungal infections.
Most people with this genetic condition are unaffected, so it is not classified anymore as a Primary Immune Deficiency.

http://emedicine.medscape.com/article/887599-overview

Then there are many Primary Immune Deficiencies that can lead to symptoms like those found in ME/CFS.

http://www.allergy.org.au/health-pr...e-diseases/primary-immune-deficiency-diseases

Then there are Secondary Immune Deficiencies for exclusion:

http://www.allerg.qc.ca/Information_allergique/6_2_secondaire_en.html
 

anciendaze

Senior Member
Messages
1,841
merylg, the inherited susceptibilities I'm looking for are generally much smaller than most of those you list. While I was infected as a child, many patients experience little in the way of problems until they are well into adult life. I'm also cautious about excluding conditions with unknown etiology. Any disease affecting the immune system which goes on for years is very likely to introduce secondary problems. I believe most of us who have been sick for decades have multiple active infections.

The time to isolate the original cause is during the episode at onset. All current definitions make this essentially impossible. I'm not even certain the pathogen which causes symptoms at onset is the pathogen which causes the chronic disease. Based on a variety of reports, and my own experience, I'm convinced that the time delay between exposure and onset of conspicuous symptoms may be weeks to months. Of course, if multiple infections are transmitted together, as in tick-borne diseases, the time between infection and onset of symptoms may be short.

There is a pattern of doctors seeing an isolated case, which seems simply weird, then noticing other such cases in their practice months later. If you try to construct a epidemiological tree starting from a "case zero", you often find gaps of at least a month. This could be because of inherent latency in the disease, or it could mean the disease is being transmitted by asymptomatic carriers during this time. The variability in findings once patients become symptomatic looks very much as if they are catching diseases described in technical jargon as "what's going around".

This points to a change in immune response, since many people enjoyed long periods of robust health before onset, shrugging off common infections. This parallels examples from polio, which early researchers noted. People never exposed to the virus as children, and apparently in peak health, could suffer terrible debilitation if they became infected later, never completely recovering. The search for a cause was complicated because the vast majority of people exposed did not become sick enough to see a doctor, let alone develop the paralytic disease. Those affected had a very specific vulnerability to a once-widespread pathogen. If that virus had not produced huge numbers of virions during acute infection it would have been almost impossible to track down in patients still sick years later. While the virus was common in urban environments the disease was not nearly as prevalent.

The U.S. epidemic in the summer of 1953 was the last before vaccines came into wide use. It killed several thousand people, and adversely affected several times that number. To keep this in perspective you need to realize that millions of other people lived in the same cities, and many were exposed to the virus. In parts of the world today it is still virtually impossible to eliminate exposure to the virus, yet most people there do not have the disease.

If polio had not produced conspicuous symptoms in children, and produced periodic epidemics in which cases were tracked in box scores on the front pages of newspapers, it is very likely the medical profession would have shrugged and tackled more common problems first. The rarity of the vulnerability would have disenfranchised sufferers.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
This is a bit of a tangent, but I thought it was interesting. NPR has been doing a series of programs on the effort to eradicate polio. There are currently two parts of the world where it still exists - Nigeria and Pakistan/India. India has had no new polio cases in 18 months. When they make it to three years they will be declared polio free.

I think it was in Nigeria that they were measuring the polio virus in the sewage water to get an idea of how much polio was present because many of the infected people are asymptomatic.
 

anciendaze

Senior Member
Messages
1,841
I had not heard those programs, Little Bluestem.

It is encouraging that we have come so far, but don't be too upset if we still fall short. We are talking about a highly-contagious disease in large and diverse populations. Past efforts to eradicate it have produced other hopeful signs, only to have a new epidemic appear. Parts of India and Pakistan are scarcely under the control of the central governments. This is a long-term struggle which has already spanned over half a century.

What is now being done in Nigeria was once done in the U.S. There are aspects of this story which defy belief. As an example, my mother apparently had the paralytic disease as a child, but never saw a doctor. Paralysis of her legs only lasted a couple of weeks. Her parents didn't take her to a doctor because doctors were expensive and there was no cure. At that time the virus could not even be imaged, because electron microscopes had not been invented. She was not out in the boondocks, this took place in a state capitol.

She largely recovered, but suffered from post-polio syndrome. This lasted until her death, at which time she was being treated by doctors who had never seen an active case of polio.

Trying to fit this kind of story into the blanks on medical forms is an exercise in frustration. As another example, when she was admitted to hospital at the end of her life, she was asked if she had ever been around anyone with TB. I pointed out that she was born before antibiotics existed, so of course she had been exposed. This marked me as uncooperative. I also pointed out that she had just been keep in isolation for weeks while tests were run to show that she did not have TB. These were not admissible. We wasted more time on paperwork while she continued to go downhill. She died of complications of a bacterial disease which was definitely not TB. I believe there was an underlying immune problem which was never addressed.

This was the point where I decided we were witnessing a struggle of patients versus current healthcare systems.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I am sorry to hear about the problems you had in (not) getting your Mother health care. I wish I could say that I am surprised.
 

natasa778

Senior Member
Messages
1,774
This is a bit of a tangent, but I thought it was interesting. NPR has been doing a series of programs on the effort to eradicate polio. There are currently two parts of the world where it still exists - Nigeria and Pakistan/India. India has had no new polio cases in 18 months. When they make it to three years they will be declared polio free.

I think it was in Nigeria that they were measuring the polio virus in the sewage water to get an idea of how much polio was present because many of the infected people are asymptomatic.

These current outbreaks and sporadic cases of paralytic polio are almost always traced to vaccine strains.

The virulent virus forms found in sewage waters in Nigeria (and several other countries in Africa and Asia) have also in all cases been traced back to vaccine strains.
 

beaverfury

beaverfury
Messages
503
Location
West Australia
Even scarier, just like I had read from the work of Dr. Hyman, I was passing this CFS to girlfriends. They would come down with stomach problems and chronic fatigue. They would even say "I feel like I can't lift my body". These were girls that had extremely healthy immune systems before meeting me. Just like in the article of Dr. Hyman and his colleagues where patients would come in and the whole office would come down with CFS. .[/quote]


This is something that has made me suspicious. In my own case there's a curious link up between previously knowing friends with IBS and CFS, and then getting CFS myself. Though it may be a coincidence.

I've been toying with the idea of trying Rifaximin but as i'm 'relatively functional' at the moment i dont want to wipe out the gut flora that i have, and maybe end up in a worse situation.
 

knackers323

Senior Member
Messages
1,625
This theory is not new but very interesting - there is another scientist in the Ukraine who makes similar claims, but with a lot more sophisticated testing and titrating of the right ABx. I am interested in this theory and there could be a lot to it as it would explain all the treatment failures so far - however a lot have tried ABx as well and while they have given some significant temporary relief it didn't stick either. Keep us updated about your long term progress. Also if this is true, natural antibiotics should be somewhat effective as well if taken in high enough dosages (with less risk of resistance and side effects). cheers

@mellster do you have any more info on the dr from Ukraine?
 
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knackers323

Senior Member
Messages
1,625
This is a known symptom of steatorrhea. Among other things, steatorrhea can be caused by bacterial overgrowth in the small intestine that deconjugate bile salts. As someone that was initially cured by nuking the gut with high-dose Xifaxan, I have no doubts in my mind that in many cases, addressing gut infections cures CFS.

@nanonug you try doing this again?
 
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knackers323

Senior Member
Messages
1,625
This idea of the mycoplasma is very convincing when you look into it. I have heard from quite a few people recovering by treating it. I've also heard of people getting better but then relapsing when they come off the meds.

Maybe that is because the infection has not been fully eradicated.

Anyone know if phage therapy could be used for mycoplasma?
 

mellster

Marco
Messages
805
Location
San Francisco
@mellster do you have any more info on the dr from Ukraine?
@knackers323 Unfortunately we haven't heard from him in a while. He used to be on PR here on this forum but got banned because he was very direct and - some would say - opinionated. I think he posted under Ai-yai. IMO him and Elph have the most compelling theory. If I still needed treatment I'd rather seek his help than a "CFS specialist". I haven't even bothered getting my Montoya study test results from back then because I have come to the conclusion that serum studies are mostly useless. Tissue biopsies are needed. If I ever hear back from him I will send you a PM if you are interested. cheers
 
Messages
81
@mellster do you have any more info on the dr from Ukraine?

@knackers

Due to the situation in Ukraine (US organised coup promoting civil war/genocide, >30,000 dead already) it is highly unlikely that the guy in Ukraine will be a viable option for help at the moment since the insanity over there is persisting. I do know that he is not contactable at the moment. However, even if he was, I don't think he is in a position to advise on individual cases. Perhaps he will release some general information about what he knows at some point. Elph68 has made some similar observations to Ai-Yai.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Isn't there a theory that inappropriate use of antibiotics can be a cause of dysbiosis? I have no doubt that for some people fixing the gut could be curative, but I would weigh up the risks before taking antibiotics, it's not always a "free lunch", as they say.

it looks very similar to ADC, i wonder if its a sister company?
 

knackers323

Senior Member
Messages
1,625
I've had CFS for 3 years. I've spent probably one hundred thousand dollars on treatments. I'm on every hormone you can possibly replace. I've ran multiple treatment protocols. I recommend you guys try double the dose of doxycycline standardly prescribed. 200mg 2 times a day.
The reason I got interested in this bacterial theory is because I had constant symptoms of bacterial infection. Burning/very foul smelling stool, acne, etc. I even had symptoms that Dr. Hyman (who is now dead) said were related to bacteria infection like joint inflammation and high blood pressure. I had gotten on high blood pressure meds and still it was out of control.

Even scarier, just like I had read from the work of Dr. Hyman, I was passing this CFS to girlfriends. They would come down with stomach problems and chronic fatigue. They would even say "I feel like I can't lift my body". These were girls that had extremely healthy immune systems before meeting me. Just like in the article of Dr. Hyman and his colleagues where patients would come in and the whole office would come down with CFS. He would treat them with IV or higher dose oral antibiotics and their CFS would disappear. Google dr. hyman and all the results. His first name is on the link below which may help.

Naturally we don't come across people who claim to have been cured of CFS.
I stumbled upon links to this guy http://articles.cnn.com/1997-02-19/...ions-sick-veterans-chemical-exposure?_s=PM:US

200mg doxycycline twice a day is helping me unlike nothing else really. And I have had stool tests done from regular labs which show no out of place bacteria. All my problems started when I went to Mexico.

anyone know what urine test is the one that Dr Hyman was using to find the bacteria?