Deep Research on CFS/ME

[Rufous McKinney]

spinal misalignments,

I'm wondering why this topic is so poorly explored. There are fancy names for situations in which the spinal defects may lead to inflammatory reactions.

My spine has been messed up my whole life. Its a major culprit.

I worry for my grandaughters and how we don't study or understand these issues.

the six year old: she has lovely posture. Yay
The toddler: also lovely, double yay

Both have potential for tethered cord. And that I worry.

My daughter has mild scoliosis now in middle age, diagnosed in High School. Mine was never diagnosed.
But she doesn't have too much trouble from that, so yay.

a New Worry: The six year old seems double jointed. Her elbows bend backward. Looks like her knees and legs almost do. She does not seem to be otherwise an EDS victim.

She has started Ballet! Oh boy. Hopefully, just leading to some Modern Dancing. I will push to veto ballet, gymnastics and other injurious sports.

My daughter was an award winning athlete, played Water Polo in high school.

Now at forty, she's damaged from the Water Polo.

I wish schools and PE programs grasped that they are the cause of injury.

 

[Rufous McKinney]

I feel that when I can go 14-18 hrs per day without eating, it gives my entire digestive system a chance to rest.

so all your calories are consumed in 6 hours?

I try to do some of that, but I"m more like 12 hours.

 

[Wayne]

so all your calories are consumed in 6 hours?

I used to try to be pretty strict about this, but I discovered there were too many times when I felt like eating earlier. Instead of eating, I got into the habit of drinking liquids to see me through. Like Kevita kombucha drinks, various teas, orgain protein drinks, etc.

If I really feel like eating (perhaps a couple times a week), I'll have an avocado and cheese snack, or something like that. So I give myself a certain amount of leeway on my caloric intake throughout the day.

I'm a big believer in making things I do for my health as comfortable and easy as possible. Making these tweaks makes me feel a lot more easy and comfortable with my regimen. And then there's days where I'll go 24 hours without anything. It all seems to work out if I listen to my intuition.

 

[Angel Bryan]

It's caused by a biofilm protected pathogenic infection or multiple infections. However it's the effects of those infections which causes all the problems with the immune system activation against harmless food proteins which have no IgA antibodies attached, because biofilms produce no IgA.

Those infections go further than that causing large amounts of LPS to be absorbed in the colon causing further inflammation along with what the immune system is causing against food. Then there is tissue destruction for which there is evidence on this forum. That is caused by the attack against the vagus nerve which serves the digestive system. That partly affects BP and urine over production. It's no wonder some people get so sidetracked and waste so much time on viruses.

I've know the cause since Jan 2014 BTW. Currently stuck trying to stop lyme disease and Bartonella from killing me.

The disease model by Joshua Leisk also has biofilms and chronic infections as the main culprit. Interestingly, I have the classic microbiome dysbiosis seen in Long Covid and when entering my Biomesight results into microbiomeprescription.com I get severe biofilm forming taxa as well as significant histamine production, my Biomesight results also show high D-Lactate and LPS producers. I have also noticed that my symptoms are closely related to my diet and that I feel bad after eating certain specific things, mainly sugar and gluten in my case. I also have H. Pylori infection and suspect candida overgrowth but I am still waiting for test results for that.

How did you "discovered" the cause? You are not the only person who shares the same hypothesis, I've seen that many people think the same and I also suspect that it is the main reason.

What would you do to cure it then? I suppose that it must a highly personalized treatment as not everybody shares the same exact infections and microbiome profile, right?

 

[Angel Bryan]

Hi @Angel Bryan -- I believe there's a lot of factors that can keep the immune system chronically activated to the point of becoming exhausted. Hidden bacterial infections can cause this, but what allowed the bacterial infections to begin with?

Improper diet, too much stress, lack of sleep, working too much, not taking time to smell the roses, spinal misalignments, etc. I believe any number of factors can weaken the immune system, and identifying potential factors and addressing them the best we can is a strategy I continually use.

I think the initial trigger is not of much relevance, once the immune system is down and the infections go rampant, it's when you get into trouble. There should be a way to reduce the chronic infections, restore the immune system and eventually reverse the condition.

For instance Ken Lassesen who runs the website cfsremission.com recovered three times from MECFS by targeting the microbiome and is in full remission. The people from Remission Biome found temporal remission by using antibiotics and also think the disease is microbiome related.

Recovery is possible, we just need to know exactly what to do, which is the hard part.

 

[Wayne]

There should be a way to reduce the chronic infections, restore the immune system and eventually reverse the condition.

I believe there are ways, with different therapies being more effective for some people than for others. I myself have found mHBOT to be extremely helpful. If you look into it, it's pretty clear pathogens and bacterial infections of all kinds are very vulnerable to being hit with pressurized 100% oxygen on a regular basis. It can even break down bacterial biofilms that shield these infections from the immune system.

And it boosts the efficiency of the immune system to boot. I often wish everybody with ME/CFS had the opportunity to try this therapy for a period of weeks or months. I suspect many would improve their health, some dramatically. I was motivated to get a home unit for myself after reading an account of a woman who was bedridden for 10 years with chronic Lyme. After 45 sessions, she began to improve, and in the next few months, completely recovered her health (after trying just about everything else under the sun).

 

[Rufous McKinney]

I'm a big believer in making things I do for my health as comfortable and easy as possible.

me, too. I know too many who are "rigidly" adhering to a bunch of rules they've adopted for themselves.

(and then they sneak off and eat half a jar a mayonnaise, because they are not allowed mayonnaise.)

 

[Angel Bryan]

I believe there are ways, with different therapies being more effective for some people than for others. I myself have found mHBOT to be extremely helpful. If you look into it, it's pretty clear pathogens and bacterial infections of all kinds are very vulnerable to being hit with pressurized 100% oxygen on a regular basis. It can even break down bacterial biofilms that shield these infections from the immune system.

And it boosts the efficiency of the immune system to boot. I often wish everybody with ME/CFS had the opportunity to try this therapy for a period of weeks or months. I suspect many would improve their health, some dramatically. I was motivated to get a home unit for myself after reading an account of a woman who was bedridden for 10 years with chronic Lyme. After 45 sessions, she began to improve, and in the next few months, completely recovered her health (after trying just about everything else under the sun).

Is that the reason why HBOT works? Because it breaks biofilms?

 

[Rufous McKinney]

I myself have found mHBOT to be extremely helpful.

What are you using to achieve this? Is this a device you purchased?

Are the biofilms in the intestine?

This got me curious - a friend of ours, got COVID back in the early days of the pandemic and he had a ozone machine in is home and he used it (like an enema) and the COVID vanished, he claimed.

This makes me wonder if extra oxygen could be delivered via that route somehow?

 

[Wayne]

Is that the reason why HBOT works? Because it breaks biofilms?

Hi @Angel Bryan -- I think it works for several reasons, being able to break up biofilms being one of them. In case you're interested, I did several posts on mHBOT on another thread. I left several links to videos that describe various benefits of mHBOT. Here's the first of those posts.

 

[Carl]

The disease model by Joshua Leisk also has biofilms and chronic infections as the main culprit. Interestingly, I have the classic microbiome dysbiosis seen in Long Covid and when entering my Biomesight results into microbiomeprescription.com I get severe biofilm forming taxa as well as significant histamine production, my Biomesight results also show high D-Lactate and LPS producers. I have also noticed that my symptoms are closely related to my diet and that I feel bad after eating certain specific things, mainly sugar and gluten in my case. I also have H. Pylori infection and suspect candida overgrowth but I am still waiting for test results for that.

How did you "discovered" the cause? You are not the only person who shares the same hypothesis, I've seen that many people think the same and I also suspect that it is the main reason.

What would you do to cure it then? I suppose that it must a highly personalized treatment as not everybody shares the same exact infections and microbiome profile, right?

Not really, all it takes are a few things. Quorum Sensing Inhibitors (QSI's) to block their communication inside biofilms, Efflux Pump Inhibitors (EPI's) to block their efflux pumps which makes them easier to destroy and enzymes with EDTA to help eliminate their biofilm(s) and then a suitable antimicrobial to destroy the pathogen(s). The microbiome is not very relevant when you really understand how the human digestive system functions and how attacks by pathogens cause human diseases. The microbiome can be corrected once the digestive barrier has been restored and the inflammation has been stopped. I've read a book called Gut and Psychology Syndrome by Dr Campbell Natasha McBride which gives ideas on restoring the microbiome and there are other similar guides by other people.

Doctors and researchers never worked this out correctly for COVID-19 where they just wasted lots of money looking at genetics trying to find something to connect the COVID-19 risk groups. It is the human digestive system which creates COVID-19 risk and what links the COVID-19 risk groups. We know how Glutathione is impacted by the inflammation and detox requirements and that is the same for viruses like COVID-19. It's the same with ME/Fibro.

The fact that you believe that you have Helicobacter Pylori could be what is causing your ME but it could also be just another infection which allowed another pathogen to cause your ME because of the reduced acidity. Therefore maybe Pylori came first and that gave the opportunity to other pathogens to cause ME.

Have a read about QSI's, EPI's and herbal antimicrobials because you are only treating your stomach and therefore it is unnecessary to wipe out large amounts of your microbiome unnecessarily IMO.

Personally I want to try and restore my nervous system in my kidneys first so that I can take advantage of my huge digestive permeability. I have had some success in the past but I didn't really use enough at the time and that is unavailable now. I do have some problems with my nervous system which will unfortunately prevent full restoration because of bad advice by Doctors/Nurses in the past. I intend to attempt to restore as much as I can. That should also improve my mood as it did in the past. The nervous system in the body is linked to the brain and what affects the body also affects the brain. Depression is the deterioration of areas of the brain which affects stress and mood but is also linked to the kidneys.