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What is your personal theory or understanding of ME/CFS?

kday

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@kday what effect have you seen these treatments you mention have in yourself and others?
For a long time I was intolerant to treatments. Activated charcoal, in particular would make me super sick.

I could tolerate cholestyramine for a while, but there was a point where I stopped it and started it again, and I could no longer tolerate it. Keep in mind that cholestyramine also binds other things like bacteria LPS, and when the immune shuts down, some of these bacteria can proliferate and species that are otherwise hamless can become harmful from overgrowth. So the cholestyramine can potentially be binding more than lipophilic exogenous toxicants. And in some cases, I think it stirs things up.

I personally haven't tried Olestra or Lipase inhibiting drugs. I've heard of people using Olestra, but I haven't heaard of people using lipase inhibiting drugs such as Orlistat, but if the theory is still correct like it was in 1996, I don't see why it wouldn't work on those with organochlorine exposures.

I personally don't see physicians anymore, so it's a bit harder for me to get these substances currently.

I know Dr. Shoemaker uses some of these treatments to treat mold illness. I definitely think sensitivity to molds exist in ME/CFS as result of CYP1B1 upregulation or allergy. I have questionable titers to Stachybotrys IgG, and have sensitivities myself, so I don't discount a mold component at all. But I think the concept of treating mold illness in particular isn't scientifically sound, especially after someone vacates a moldy building and gets new belongings. I don't think it's mold toxins that he is generally treating. And if it is, I don't think cholestyramine will help a continuous airborne exposure much, if at all.

Shoemaker claims to be treating CIRS, which isn't a defined medical illness. What he is really treating is toxic encephalopathy that's the result of lipophilic toxins. And it's well-established that such protocols are effective for removing organochlorine compounds.

But I think how much someone improves would be relative to their exposure and severity of insult to the limbic areas of the brain. General hypopituitarism and limbic kindling occurs as a result of exposure to organochlorine compounds.(as stated in the medical literature) just like what is observed in ME/CFS. I think how much you get better will be relative to the degree of damage that was done. In some (or many?) cases, the damage may never be undone and the limbic kindling may never go away. Your chances are probably better during youth or adolescence when the brain is better at remodeling.
 
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I believe that ME/CFS is mainly caused by exposure to Organochlorine pesticides, mainly gamma-hexachlorocyclohexane (Lindane) and Hexachlorobenzene (HCB), but potentially other organochlorines.
Pondering your theory..... In reflecting on the long history here, I've focused recently on: these other triggers.

My first Eppstein Barr exposure included: we now live surrounded by oceans of orchards which get sprayed with: whatever they used in the 1960s. Also smudge pots in winter/ I got EBV that winter. Lived surrounded by orchards for the next: 10 years. Got acute EBV 2 more times.

But I also: recovered to some "normal" level after these rounds of EBV. I did not exhibit CFS. Maybe I didn't win Track Races.

Conditions here worsened around the age 50- menopause (altered hormones, sleep issues) and high stress.

But its only this last year that: I've become worsened and become much more: ME moderate and a great worsening of Brain fog and PEM.

so what happened over this last year? 1) massive personal stress called: wildfire house burned down. 2) post that stressor, which is Profoundly Intense- I am living in the area which burned and lawyers send letters to everyone telling them how toxic it is, the ash is toxic etc. So: I clearly received a re-exposure of more Toxins times a Massive Personal Stressor.

I got two severe intestinal illnesses this last year also. Conditions went downhill after each of these severe gastrointestinal events.

So now I am a curious what they sprayed on orchards in those days.
 
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I believe that ME/CFS is mainly caused by exposure to Organochlorine pesticides, mainly gamma-hexachlorocyclohexane (Lindane) and Hexachlorobenzene (HCB), but potentially other organochlorines.
Pursuing this pesticide exposure theory: I offer this summary article on recent research at UC Davis. Quite interesting, Preliminary. They found an increased autism risk in those exposed to higher levels of pesticide use, household and agricultural.

https://health.ucdavis.edu/publish/news/newsroom/12255

Folic acid may mitigate autism risk from pesticides
They State: “We found that if the mom was taking folic acid during the window around conception, the risk associated with pesticides seemed to be attenuated,” said Rebecca J. Schmidt, assistant professor in the Department of Public Health Sciences and first author on the paper.

Folic acid intake below the median and exposure to pesticides was associated with higher risk of autism than either low intake or exposure alone,” said Schmidt, a UC Davis MIND Institute faculty member. “The mothers who had the highest risk were the ones who were exposed to pesticides regularly.”

“Folate plays a critical role in DNA methylation (a process by which genes are turned off or on), as well as in DNA repair and synthesis,” said Schmidt.
 

debored13

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My personal belief is that, like @jeff_w states in mechanicalbasis.org , that a number of pwME have some form of cervical spine or brainstem compression. But in my opinion, there may be something upstream of this, at least in a number of cases. And I believe that what @Hip calls the “dual-factor” theory of an infection combined with an environmental factor that suppressed immunity , is consistent with this mechanical theory. The reason I think this is because many people w/ cci diagnoses do not have a genetic connective tissue disorder OR head trauma to explain the damage to their collagen.

So I believe that some environmental variable yet to be discovered is wreaking havoc on connective tissue and also suppressing immunity, to the extent that whatever initial infection people have as a trigger does more damage.
So (infection plus x) > collagen damage > brainstem compression > all ME/CFS symptoms.
With this theory I’m definitely banking on (x) being really important and maybe the difference between why some people stay sick after infections and some don’t.
 

ljimbo423

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“Folate plays a critical role in DNA methylation (a process by which genes are turned off or on), as well as in DNA repair and synthesis,” said Schmidt.
That's an interesting study. Here's another little tidbit about methylation-:)-

THE LIVER IS AN IMPORTANT ORGAN CONTROLLING METHYLATION

Half of the methionine coming from diets is utilized by the liver for forming SAM that is needed for methylation reactions and more than 85% of methylation reactions take place in liver.
LINK

I think this is probably why so many of us with ME/CFS get really strong detox symptoms when taking supplements that increase methylation.

They increase the methylation cycle in the liver, which speeds up the detoxification process. I think mainly by creating more glutathione, which is a powerful detoxifying agent.
 
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With this theory I’m definitely banking on (x) being really important and maybe the difference between why some people stay sick after infections and some don’t.
Found this study conducted in Turkey, looking at exposure to organophosphate pesticides and issues associated with the flexibility of the aorta...and it ties into collagen: ...results indicate arteries become less stiff, relating to weakened cross bonds in collagen and elastin.

https://www.biomed.cas.cz/physiolres/pdf/60/60_39.pdf

Effects of Organophosphate Insecticides on Mechanical Properties of Rat Aorta

"In addition, a number of studies reported that acute and chronic toxicity of organophosphate insecticides could lead to degeneration of collagenous and elastin fibers of vascular wall (Antovet al. 1984, Akimov and Kolesnichenko 1985, Yavuz et al. 2005)."

"The results imply that chronic exposure to organophosphate pesticides decreases the strength of the aorta and therefore might influence the response of the aorta to mechanical loading induced by blood pressure."
 

kday

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Thats the direct route to increasing my blood pressure: reading about EBV and resulting: outcomes.
Oh I wasn't implying we were going to get leukemia or lymphoma. It's an area of science where a lot of studies were done regarding organochlorine pesticides and EBV. So much cancer studies probably because they get a lot of funding.

Some studies claim that's it's EBV that that makes you more sensitive to organochlorines and PCBs, but I think it makes more sense the other way around.
 

kday

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Understand.....so was just thinking about how: generally they say just about everybody is exposed to Eppstein Barr. So I actually have no way to know: if I was exposed prior to: my known exposure at 10 years old.
I am EBV negative. My mom is too, I think. But we both have similar issues (but mom presents more like mild case of Sjörgens Syndrome that waxes and wanes).

But my Coxsackie titers are through the roof. HHV-6 titers normal.

It's definitely ME/CFS based on a bunch of other laboratory markers as well as things like exercise testing and autonomic testing. I've had it all. My abnormalities are like the abnormalities of the Incline Village (Lake Tahoe) patients, and this is the area I got sick at nearly a decade ago now.

And even in that cohort, many if not most had the characteristic EBV (and HHV-6) abnormalities, but not all. Which is why they concluded the illness is not caused by EBV back in the 1980's.
 

Avenger

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Has anyone changed their mind about causation scince posting on this thread?

Hi, I was diagnosed with ME, CFS and even Fibromyalgia for 18 years, but was later diagnosed with D-Lactic acidosis secondary to Bacterial Overgrowth (please see Increased D-Lactic acid intestinal bacteria in patients with CFS).

All of your theories also fit for D-Lactic acidosis which acts like a hidden infection but remains in the gut.

Every Organ will be affected during raised levels of D-Lactic acid which is a poison and neurotoxin, and I was given an earlier diagnosis of autonomic dysfunction which was found to include damage to postganglionic sympathetic fibres which were found to be significantly damaged.

My autonomic diagnosis was also attributed to pesticide poisoning, but it is equally as likely that this was due to D-Lactate poisoning.

High acidic levels in fluctuating acidosis will also cause further damage (please see last quote on page).

It is probable that the use of antibiotics is also contributing to D-Lactic overgrowth, because antibiotics can select for Overgrowth through resistance of bacterial colonies and decimation of others.

But equally viral infections could also be implicated in Bacterial Overgrowth leading to D-Lactic acidosis and much as in AIDS a virus will remain within Gut Bacteria to both alter the original hijacked bacteria and to increase overproduction as a means for the virus to multiply. It is also possible that phage virus can be manipulated to eradicate such overgrowth's.

My own belief is that there are a number of forms of Bacterial Overgrowth that result in metabolites causing infection like symptoms such as D-Lactic acid, and there may be a number of variants causing ME and CFS (Abstract Below).


2009 Jul-Aug;23(4):621-8.
Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome.
Sheedy JR1, Wettenhall RE, Scanlon D, Gooley PR, Lewis DP, McGregor N, Stapleton DI, Butt HL, DE Meirleir KL.
Author information

Abstract
Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis. A significant increase of Gram positive facultative anaerobic faecal microorganisms in 108 CFS patients as compared to 177 control subjects (p<0.01) is presented in this report. The viable count of D-lactic acid producing Enterococcus and Streptococcus spp. in the faecal samples from the CFS group (3.5 x 10(7) cfu/L and 9.8 x 10(7) cfu/L respectively) were significantly higher than those for the control group (5.0 x 10(6) cfu/L and 8.9 x 10(4) cfu/L respectively). Analysis of exometabolic profiles of Enterococcus faecalis and Streptococcus sanguinis, representatives of Enterococcus and Streptococcus spp. respectively, by NMR and HPLC showed that these organisms produced significantly more lactic acid (p<0.01) from (13)C-labeled glucose, than the Gram negative Escherichia coli. Further, both E. faecalis and S. sanguinis secrete more D-lactic acid than E. coli. This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications.
PMID: 19567398
[Indexed for MEDLINE] Free full text.

Quote;
''The idea that “being too acid” contributes to disease susceptibility, especially cancer, has been around for a long time in the natural/integrative medicine world. This concept was easily discounted by conventional medicine as measuring blood pH on various types of diets showed no change.
Up until about 10 years ago, no research existed to counter this skepticism. However, since then, a growing body of research has documented not only that “acidosis” is a real phenomenon, but that it is now known to contribute to a wide range of diseases, such as metabolic syndrome, cancer, osteoporosis, kidney stones, and increased susceptibility to environmental toxins''.
 
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Please see my last post near yours concerning Mitochondrial Dysfunction
Sorry, could not find a post there.

But definately this is an important issue also.....and I"m pretty sure this is key to my recent improvements targetting gut improvements, insulin resistance stabilizing, and taking key herbs more consistently (rather than erratically). Brain feels less pink.
 

msf

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Has anyone changed their mind about causation scince posting on this thread?
I change my mind, but not so much that I forget where I am.

That is, I have changed my mind about the relative importance of things many times, but I have some that I still find to be very important, chief amongst these being the gut.

As for things I have changed my mind on, the list starts 5 years ago with realising that at least my ME wasn't triggered by herpes viruses and ends yesterday with me realising that this purinergic thing, which I hadn't bothered to look into before, is probably responsible for quite a lot of my recent improvement. I am planning to write a blog about my new current understanding of my approach, so I won't go into it too much here.
 
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msf

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I think you can ignore the mitochondrial dysfunction in the body. I don't seem to have any reduction in muscle function or endurance, so my body's mitochondria are probably functioning more or less normally. Others have said the same thing, so problems with the body's mitochondria aren't essential for ME. It's more likely a common secondary symptom.

It should be possible for the brain's mitochondria (specifically the microglial ones) to have genetic problems that don't affect the body's mitochondria. I think it's quite likely that my microglial mitochondria are malfunctioning. That may cause neuroinflammation or be caused by it; I don't know which is more likely.
If you don't have any reduction in muscle endurance (i.e. you don't have to stop exercising because you are too heavy legged) then we do not have the same illness, as this is my only remaining problem.