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S-VV's desperation medicine

Wishful

Senior Member
Messages
5,684
Location
Alberta
I don't think ME/CFS dysbiosis is different than dysbiosis in people without ME/CFS. As far as what is needed to reverse it..

We'll have to disagree about that. I expect that the species and numbers of an individual's microbiome varies enough that what is good for one isn't necessarily good for another. It seems reasonable to me that one person would do better on a high-carb diet because that alters the population for the specific needs of that person's body. There may be statistical weight against a specific species of carb-loving bacteria; maybe 80% of the population develops an inflammatory reaction to species x, but other people might not have a response to that one, but might have a response to one that prefers a low-carb diet.

As for the difference for ME victims, what applies to 'normal healthy' people doesn't necessarily apply to us. Maybe those of us who do have a bad response to altered microbiome are suffering from a very specific chemical produced by certain bacteria, rather than general 'dysbiosis'. Those people might be normal and healthy with the same microbiome if they didn't have whatever else is involved in ME.

I just don't feel that there's going to be a diet or supplement regime for altering the microbiome that will be the magic treatment for a majority of ME victims. There might be one that helps a small number, and another completely different one that helps a different small group.

I'll wait for the researchers to resolve this argument. :)
 

pattismith

Senior Member
Messages
3,932
Thats a long time! did you take any breaks in between, or noticed any change in bowel habits?
I didn't notice any change in the bowel.
My spinal pain was fixed as soon as I started the Azithro. If you do a search on this forum, you will find many threads where I describe extensively my experience with azithromycin, which was complexe.

The protocol I used was the one for Chlamydia pneumoniae (I have IgG against both CP and Mycoplasma Pneumoniae, and also against Yersinia Enterolitica).

I took three to four days a week of Azithro 500 mg per day. (and Doxy every days)

I had to cut the azithro dose 2 x 250 mg per day, and took it separated from the meals, because of my lactates peaks.
 

pattismith

Senior Member
Messages
3,932
We'll have to disagree about that....

I'll wait for the researchers to resolve this argument. :)

For what I have experienced myself, when I had a worsening of my symptoms, I was taking opioids, and had not any drive for eating. I spontaneously changed my diet to steamed chicken + white rice + honey for two years (also some coca cola and apples, because it was helping with my nausea). And I improved, even though I lost many kilograms.

(Then when I decided to eat normally suddenly and to gain weight, I fell in a major depressive disorder for two years...)

The diet I had when I slowly improved, was a low fiber diet, the kind of diet the Crohn people are eating to improve and heal their gut!
I realised it many years later, when a friend of mine with Crohn told me that when she is in crisis, the doctor tells her to eat only boiled chicken and rice.....

I suppose the goal is to avoid any gut inflammation, with only easy to digest food.
I
 

S-VV

Senior Member
Messages
310
Hello everyone, a few updates!

-I have caught the flu, meaning my microbiome is more perturbed due to the infection. Until symptoms subside I will continue taking nystatin + fluco, but will hold off on the antibiotics.

-I have gained some of my anaerobic threshold back. Is it because the lactic acid bacteria are finally leaving my digestive tract or because the C. butycurum I've been taking for the last 5 days is converting lactic acid? I do not know.

- Stumbled on this abstract:

Fecal Microbiota Transplantation for Fibromyalgia: A Case Report and Review of the Literature

A 58-year-old patient diagnosed with fibromyalgia, irritable bowel syndrome (IBS) and chronic fatigue syndrome (CFS), non-responsive to variety of treatments over the years, suffered from significant social and occupational disabilities. The patient was interested in fecal microbiota transplantation (FMT), but given that FMT is not approved for these indications, he used an online protocol for FMT screening and preparation and self-instilled the filtrate using an enema 6 times. FMT resulted in a gradual improvement of symptoms and 9 months after the last treatment, the patient reported full recovery of symptoms, going back to work at full time employment. Improvement of symptoms was associated with major alterations of the enteric microbiota, according to next generation sequencing analysis performed before the first FMT and after the last FMT. Most prominent alterations at the genus level included a decrease in fecal Streptococcus proportion from 26.39% to 0.15% and an increase in Bifidobacterium from 0% to 5.23%. This case is added to several additional case reports that demonstrated the effectivity of FMT in these functional disorders that are lacking an otherwise good medical therapeutic intervention. We conclude that randomized controlled trials are required to ground FMT as a possible therapy for these difficult-to-treat conditions.

In light of such a disproportionate cocci overgrowth being possible, I will switch the metronidazole for azithromycin, which has a lot more activity against strep + staph + enterococcus
 

S-VV

Senior Member
Messages
310
Also I've been trying to figure out what diet I'm going to follow while and after I take the antibiotics, since that will likely be a determining factor on what colonizes me. I was thinking about a Mediterranean diet with lots of fruit, a diversity of vegetables, legumes, nuts, whole grains, a bit of dairy and fish. I have chosen this in light of several studies citing potential for the Mediterranean diet to positively modulate the gut microbiota.
 

pibee

Senior Member
Messages
304
never studied microbiome much but i can just guarantee that flushing your microbiome isn't pleasant feeling..
it's how i learnt what ME really is :D

I had approx 1 year of antibiotics.....maybe even more i cant tell anymore, . because of finances never did gut tests etc.. then i received IV rocephine 19 days.
First 2-3 days was like miracle and i felt it will cure me. I hoped it's just Lyme responding (and at that time i ddnt even believe it's a problem but ....so drastic improvement gave me hope)

then it was okay for the next 16 days with maybe some signs of stagnation

once rocephine was stopped I got the most nasty attack ever within days with developing ME symptoms like burning and "attacks" in head when i read, socialize...
At 30 yrs old I lost all mathematical skills from this attack - (mathematics was my strongest side ever, despite illness it seemed like that part of brain always works ).- it dropped to maybe 20% of my previous capabilities within days.


etc etc... ..many more classical ME symptoms.

thankfully most of it is reversed with thyme oil (and probably time), but not fully - my math skills and social abilities are not fully back (but it's slowly going up) and it's very scary way to find out what ME is :p


Antibiotics helped a lot "Lyme" symptoms but def didnt help gut.
but my physicians were less skilled than you (judging by your carefully planned protocol ) so i hope you'll have better luck
 
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S-VV

Senior Member
Messages
310
but my physicians were less skilled than you (judging by your carefully planned protocol ) so i hope you'll have better luck

Thanks! Just the morale boost I needed.

At 30 yrs old I lost all mathematical skills from this attack - (mathematics was my strongest side ever, despite illness it seemed like that part of brain always works ).- it dropped to maybe 20% of my previous capabilities within days

Thats... not good. Considering I rely on my mathematical abilities to bring in what little cash I can to fund treatment trials. Are you a mathematician, or something similar?

I had approx 1 year of antibiotics.....maybe even more i cant tell anymore, . because of finances never did gut tests etc.. then i received IV rocephine 19 days.
First 2-3 days was like miracle and i felt it will cure me. I hoped it's just Lyme responding (and at that time i ddnt even believe it's a problem but ....so drastic improvement gave me hope)

then it was okay for the next 16 days with maybe some signs of stagnation

once rocephine was stopped I got the most nasty attack ever within days with developing ME symptoms like burning and "attacks" in head when i read, socialize...

Thats something I've read various times: Antibiotics bringing temporary relief but then they stop working. If you ever want to give this treatment avenue a chance, here are some suggestions you can make your physician follow:

-Continuous use is likely bad: Since we don't want to kill bacteria, just alter the bad equilibrium. A year of antibiotics probably killed some keystone species. A good schedule could be 10-14 days on and 14 days off.

-Rotation is essential: The gut microbiome probably develops antibiotic resistance much quicker than intracellular infections since there a a lot of them, with lot of different species, and they actively transfer resistance genes between them. Antibiotic combination and rotation is essential to get around this.

I hope you completely recover from your antibiotic experience and found a protocol that helped you. How are you doing nowadays?
 

Hip

Senior Member
Messages
17,824
My hypothesis is simple: I have a profound state of stable dysbiosis.

Looking just at the bacterial component of your guts may miss half the picture. Studies have shown that most ME/CFS patients have chronic enterovirus infections in their gut lining. And it's not just ME/CFS: functional dyspepsia patients (those who have chronic indigestion with no apparent cause) have been found to have enterovirus infection in their gut lining.

I wonder if these chronic enteroviral infections in the gut lining actually encourage bacterial dysbiosis or SIBO? Since the Th1 antiviral and the Th2 antibacterial immune responses are to some extent mutually exclusive, the immune system may struggle to cope when there are both viral and bacterial infections present, perhaps leading to bacterial and viral overgrowth.

Dr Chia has had some success using oxymatrine to treat the enterovirus infections found in ME/CFS. He also uses the antivirals Epivir and tenofovir.

Thus I wonder if more success might be obtained if one were to simultaneously treat the viral and bacterial overgrowth/SIBO in the intestines?
 

S-VV

Senior Member
Messages
310
Hey @Hip,

I am very aware of the non-cytolytic enterovirus issue. If there existed an anti-(retro)viral that showed activity against it, I would be popping them like candy.

There definitely could be a connection between enteroviruses and dysbiosis. Perhaps the enterovirus blocks the return of the microbiome to a normal steady state. Here is an interesting thread of a woman who benefited from Tenofovir: https://forums.phoenixrising.me/ind...t-sick-for-20-yrs-tenofovir-poll.54912/page-3

She says:

"t took about 4 months on Viread for any changes to become apparent, but then I had a rapid increase in ability over a couple of weeks followed by much slower gains with some bumps along the way until the 10 month point. My physical ability peaked at about 10 months after which I had some decline. That decline appeared to be halted when I stopped the drug at 12 month"

However, she also says:

"Then in July I needed antibiotics for an infected cut, and during that week I have to say I felt more well than I have in years! So with feeling good, I got more relaxed over the fasting thing during this period... unfortunately the boost that I attribute to the antibiotics only lasted a while, and I started to slide backwards again.... meh"

This pattern of feeling well on antibiotics without prior herx is indicative of dysbiosis resolution rather than killing any bacteria, like Bb. So we see an (anecdotal) connection between dysbiosis and anti-retroviral exerting a benefit.
 

Hip

Senior Member
Messages
17,824
I am very aware of the non-cytolytic enterovirus issue. If there existed an anti-(retro)viral that showed activity against it, I would be popping them like candy.

Dr Chia says tenofovir helps some of his patients; I am not sure if it is enterovirus ME/CFS patients or herpesvirus ME/CFS patients (or both) that tenofovir works on, but I would be interested to know, as it may be that this drug only targets certain viral subsets of ME/CFS.

Epivir he says has some effects against enterovirus, and can produce modest benefits in some patients.

Oxymatrine has been shown effective against enterovirus ME/CFS in Dr Chia's informal study.



Then in July I needed antibiotics for an infected cut, and during that week I have to say I felt more well than I have in years!

If there is a very rapid improvement on antibiotics (eg feeling better within one or two days of starting them), I tend to think it's probably not the antibacterial effects of these drugs (which may take longer to work), but may be their anti-inflammatory effect, as some antibiotics do reduce anti-inflammatory cytokines, eg erythromycin and other macrolides, doxycycline.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I'm a bit bothered by the assumption that if antibiotics provide even temporary benefits, it MUST be due to correcting dysbiosis. Antibiotics have other effects that could provide the benefit. They might alter bacteria populations elsewhere in the body. They might affect immune system activity, perhaps by relieving them of fighting bacterial products or by being triggered by an increase in a bacteria more resistant than one that is being reduced in population. Antibiotics might have an effect unrelated to bacteria.

I'm not saying that dysbiosis isn't involved, but rather that we shouldn't ignore other possibilities. If it is dysbiosis, and antibiotics work by reducing one specific species, that should be possible to prove in a study that measures the gut population by species. If eliminating that species entirely doesn't cure ME, then it's a secondary effect rather than a core issue, and research resources should be directed elsewhere.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
If it is dysbiosis, and antibiotics work by reducing one specific species, that should be possible to prove in a study that measures the gut population by species. If eliminating that species entirely doesn't cure ME, then it's a secondary effect rather than a core issue, and research resources should be directed elsewhere.

I think it's because antibiotics don't just kill off one species of bacteria, is the reason they are not very effective in treating dysbiosis.

They usually kill off many different bacteria. I think often, the good bacteria, like Acidophillus and Bifidus, are the first to die. Because they don't have the resistance of pathogenic bacteria like Pseudomonas Aeruginosa and others.

Pseudomonas Aeruginosa is a fairly common bacteria found in the gut and one of many pathogenic bacteria that is found to be overgrown in dysbiosis.

I think researcher must be working on antibiotics that are more targeted for specific bacteria. They are desperately needed. Not arguing, just stating my view.:)
 

JES

Senior Member
Messages
1,320
There is a thing called bacteriophages, which are viruses specifically targeted to kill certain bacteria and leave the other bacteria unaltered. Phage therapy can be a very powerful treatment, provided that you are treated with the correct phage. I trialed a commercial phage mix that was available on iHerb and Amazon, but it seems it was only active against certain E.coli bacteria. To get more targeted phage treatments, it seems the only option would be to travel to the Phage Therapy Center in Georgia.
 

S-VV

Senior Member
Messages
310
I'm a bit bothered by the assumption that if antibiotics provide even temporary benefits, it MUST be due to correcting dysbiosis. Antibiotics have other effects that could provide the benefit. They might alter bacteria populations elsewhere in the body. They might affect immune system activity, perhaps by relieving them of fighting bacterial products or by being triggered by an increase in a bacteria more resistant than one that is being reduced in population. Antibiotics might have an effect unrelated to bacteria.

I'm not saying that dysbiosis isn't involved, but rather that we shouldn't ignore other possibilities. If it is dysbiosis, and antibiotics work by reducing one specific species, that should be possible to prove in a study that measures the gut population by species. If eliminating that species entirely doesn't cure ME, then it's a secondary effect rather than a core issue, and research resources should be directed elsewhere.

I'm not saying that it must be the microbiome, but if theres no herx, it's rarely an infection big enough to cause ME/CFS. And as to the antiinflamatory effect of antibiotics, why can't they be emulated with some other anti-inflammatory?
 

Hip

Senior Member
Messages
17,824
And as to the antiinflamatory effect of antibiotics, why can't they be emulated with some other anti-inflammatory?

The classic anti-inflammatories that often dramatically improve ME/CFS symptoms are corticosteroids. One severe bedbound ME/CFS patient finds that taking prednisolone 20 mg just before going to the gym allows him to do a heavy cardiovascular workout without any PEM occurring at all. Severe patients normally have trouble walking across the house, let alone going to the gym! So this shows how powerful steroids can be at switching off ME/CFS symptoms.

However, in spite of the short-term benefits, corticosteroids are not advised for long-term use in ME/CFS, because they decrease the antiviral Th1 response and suppresses T-cell function, which may allow viral infections to grow and proliferate. This is most likely why ME/CFS patients who have tried corticosteroids at normal doses for several months tend to report becoming worse.

This observed worsening over the long-term I think provides some evidence that ME/CFS is primarily a virally driven disease: because although steroids decrease the antiviral Th1 response, studies show they actually boost the antibacterial T2 response. Thus if ME/CFS were primarily driven by an extracellular bacterial infection, if anything you might expect long-term steroids to improve ME/CFS, or at least not worsen ME/CFS. But long-term steroids do worsen ME/CFS (I am not talking about low dose steroids, which can be helpful for ME/CFS; but long-term steroids at normal doses worsen ME/CFS).

The exception is intracellular bacteria such as Chlamydia pneumoniae, which are linked to causing ME/CFS symptoms. Intracellular bacteria are actually dealt with by the Th1 response, like viruses. But extracellular bacteria living outside of cells are dealt with by the Th2 response.
 
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ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
This observed worsening over the long-term I think provides some evidence that ME/CFS is primarily a virally driven disease: because although steroids decrease the antiviral Th1 response, studies show they actually boost the antibacterial T2 response. Thus if ME/CFS were primarily driven by an extracellular bacterial infection, if anything you might expect long-term steroids to improve ME/CFS, or at least not worsen ME/CFS. But long-term steroids do worsen ME/CFS (I am not talking about low dose steroids, which can be helpful for ME/CFS; but long-term steroids at normal doses worsen ME/CFS).

That's one way to look at it. However, how much do steroids shift to a TH2 dominant state? They might not cause enough of a shift to make a noticeable difference in ME/CFS dysbiosis.

Also, what else do steroids do to the immune system or possibly to mitochondrial function, in ME/CFS that could be making symptoms worse?
 

Hip

Senior Member
Messages
17,824
However, how much do steroids shift to a TH2 dominant state? They might not cause enough of a shift to make a noticeable difference in ME/CFS dysbiosis.

I don't really know, it may not be much. Also when I searched, I could not find anything to suggest that corticosteroids might have any useful immune stimulating effect against bacterial infections.


And it should be mentioned that the divide between intracellular bacteria (which are dealt with by Th1) and extracellular bacteria (which are dealt with by Th2) is not always black and white.

Some bacterial species that are normally extracellular can convert into an intracellular form (called an L-form, or cell wall deficient bacteria) which can live inside human cells.

Presumably it would then require a Th1 immune response to target these bacteria, once they have transformed into the L-form and gone off to live within host cells.


There are around 50 species of bacteria known to convert into the L-form and then hide inside cells, and these include: Staphylococcus aureus, Escherichia coli, Proteus mirabilis, Klebsiella pneumoniae, Helicobacter pylori, Borrelia burgdorferi, Treponema pallidum (causes syphilis).

Prof Gerald Domingue spent many decades researching L-forms, and their possible connection to disease: Domingue has "implicated L-form bacteria in several kidney-related diseases including pyelonephritis, glomerulonephritis, idiopathic hematuria, and interstitial cystitis. He also speculated about their role in other diseases such as rheumatic fever, tuberculosis, syphilis, and rheumatoid arthritis". Ref: here.

Domingue even devised an antibiotic protocol to target some of these L-form infections (see this post).

But apparently L-forms are hard to detect, which makes research on them difficult.


Prof Trevor Marshall has hypothesized that L-form bacteria are the cause of ME/CFS (as well as other diseases), and his Marshall Protocol is designed to treat L-form infections. Some ME/CFS patients report they have done well on the Marshall Protocol, though it seem to take several years on the protocol for benefits to appear.
 
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tyson oberle

Senior Member
Messages
210
Location
tampa, florida
There is a thing called bacteriophages, which are viruses specifically targeted to kill certain bacteria and leave the other bacteria unaltered. Phage therapy can be a very powerful treatment, provided that you are treated with the correct phage. I trialed a commercial phage mix that was available on iHerb and Amazon, but it seems it was only active against certain E.coli bacteria. To get more targeted phage treatments, it seems the only option would be to travel to the Phage Therapy Center in Georgia.
So is there no place in the USA or another country to do Phage Therapy? If so, why?
 

Hip

Senior Member
Messages
17,824
@ljimbo423, this might be of interest to you: this article states that "There’s supposed to be a new gut product from Germany that will be available in 1.5-2 years in the US. It’s not a probiotic, but it works by blocking lipopolysaccharides."

Then in the comments section, someone says that: "In Australia there is already a colostrum product called Protectyn by Immuron which is high in specific antibodies, namely anti-LPS antibodies, which target and remove harmful Bacteria and LPS Toxins in the Gut. Is this what you were referring to from Germany?"

Link to the Protectyn anti-LPS antibodies product here.