The Causes of ME/CFS, POTS, and Chronic Illness - A patients opinion

Jwarrior77

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This is my opinion on the causes of these illnesses coming from a patient who suffers from these conditions. My opinion is based on my own experience, research from the top scientists studying this, and also other patients such as Jeff Wood, Jen Brea, and others who have contributed a lot of information to help better understand what's going on. This might be all over the place and it might not seem like they connect together but they do. This is still a work in progress and a lot of polishing up need to be done. But I'd just thought I would share my thoughts so maybe some other people can benefit from it, and add or give their perspective.


I believe ME/CFS results when your body has chronic persistent infections that your immune system can no longer handle or kill, a metabolic trap being induced, along with brainstem and vagus nerve dysfunction contributing to it.

A metabolic trap most likely gets induced when pathogens cause the immune system to flood white blood cells with an influx of tryptophan. The IDO1 enzyme and IDO2 enzyme are the enzymes that convert tryptophan into kynurenine, and then into nicotinamide adenine dinucleotide (NAD+). The IDO2 enzyme kicks in to help the IDO1 enzyme when there is too much tryptophan for the IDO1 enzyme to convert. Almost all ME/CFS patients have mutations in the IDO2 enzyme gene rendering it useless. The only problem is that the IDO1 enzyme becomes inert if tryptophan becomes too high. Because of mutations in the IDO2 gene, the IDO1 pathway gets overwhelmed and it can no longer process and convert tryptophan into kynurenine and then eventually NAD+. Tryptophan gets built up and the body can't get rid of the excess tryptophan fast enough. The person is now stuck in the metabolic trap. This trap is the driver of the mitochondrial and cellular dysfunction seen because of the inability to make sufficient amounts of NAD+ which is crucial for mitochondria and cellular metabolism. This cellular dysfunction will also explain the disrupted metabolomics as well as some of the fatigue that is produced because of the inability to make sufficient amounts of ATP for the cell. The rest of the fatigue is most likely from chronic inflammation, cytokines, increased lactate, and cell stress from the pathogens in the body. Not producing enough Kynurenine will affect the functioning and efficiency of the immune system to kill pathogens as Kynurenine is vital for the immune system. Thus, any infections that the person acquired in the first place will continue to be active and become chronic in the body.

There are many pathogens that probably contribute to this metabolic trap process. However, Toxoplasmosis should be a prime suspect in the driver of this metabolic dysfunction as I believe it messes with the IDO1 gene and pathway. This could explain why so many seemingly normal people develop ME/CFS after a viral trigger due to a high percentage of the population being exposed to Toxoplasma without them knowing about it. 11% of the U.S. population has been exposed to Toxoplasma and 30 - 50% of the global population is infected. The immune system keeps it in check and they are asymptomatic for most of their lives. It only becomes a problem once the immune system is hit with more pathogens or other stressors causing it to reactivate in the body. When someone is immune compromised, Toxoplasma can become a serious problem.

Borrelia, Bartonella, and other tickborne coinfections should be key prime suspects for all ME/CFS patients. These are stealth infections by nature. Lyme is the most common vector borne disease in the US and cases are only rising each year. It is also shamefully under diagnosed and reported so many people don't even know they were infected including many ME/CFS patients most likely. The blood tests for these pathogens are also shockingly inaccurate leading to many false negatives. These infections in combination with parasites, mold, heavy metal toxicity, and viruses that get reactivated is what causes many ME/CFS symptoms along with the metabolic trap getting induced because of them. All of the above will continue to cause cellular damage and oxidative stress in the body making it very difficult for the body to heal and fight pathogens. Infectious agents that cause great stress on the immune system such as Lyme in combination with genetic factors like common gene mutations of the IDO2 gene is what probably causes the big increase of tryptophan into the cell. The immune system overreacts in the response to the pathogen which therefore gets you trapped. Also people who have connective tissue disorders like EDS are especially vulnerable. Many people with Lyme end up developing chronic Lyme which has many similarities with ME/CFS. Also CD57 natural killer cells tend to be low in chronic lyme and the same thing occurs with many ME/CFS patients.

Epstein Barr Virus is another key pathogen that many ME/CFS patients have problems with and should be studied more. Like Lyme, it seems to be a very hard infection to totally get rid of and it does a number on the body. It also causes swollen lymph nodes which disrupts lymph drainage making it harder for the body to detox. Many MECFS patients have chronically swollen lymph nodes that don't seem to go away. Many people get exposed to EBV when they are young, only for it to reactivate in times of stress.

I also believe vagus nerve damage or anything that affects the functioning of the nerve is a driver of these symptoms as well and contributes to the disease process. I believe vagus nerve damage/dysfunction is what causes POTS and the dysautonomia seen. Things that affect the functioning of the vagus nerve would be cervical spine instability, physical abnormalities of the brain and spine that can be acquired or congenital, and pathogens that can either infect or disrupt this nerve. The fact that Lyme likes to infect cranial nerves and result in nerve dysfunction like facial palsy should give prime suspicion of it infecting the vagus nerve. How it likes to cross the blood brain barrier and cause neuroborreliosis should also be obvious as that can contribute to the brainstem dysfunction and disrupt the hypothalamus.
Borrelia and other coinfections like to cause systemic nervous system issues like MS, ALS, dystonia, tremors, and other issues. It's logical to assume that it can also disrupt the autonomic nervous system given the high percentage of Lyme patients who end up developing POTS.

Many people develop dysautonomia and ME/CFS after head injury, car accidents, whiplash, surgery, etc. This all puts stress at the craniocervical junction therefore injuring the function of the vagus nerve and brainstem. If you have EDS or a connective tissue disorder this only becomes worse because of the lax ligaments. And we also know Lyme loves to infect and destroy connective tissue making the collagen weak which is a link. Another link that I noticed is that Bartonella loves to infect and cause damage to the blood vessels. Many people with Bartonella end up developing marks on their body resembling stretch marks. These marks are strikingly similar to EDS stretch marks. Could many EDS patients be misdiagnosed with chronic Lyme and Bartonella without them knowing? I believe mold mycotoxins and Mast Cell Activation Syndrome can also weaken and damage connective tissue by all the inflammatory mediators and MMPs they produce.The immune system further becomes dysregulated since the autonomic nervous system helps to regulate it. Due to this trauma on the head/neck and the autonomic nervous system that becomes weakened, any pathogens that were dormant can see this vulnerable state of the body and go on the attack. Lyme and pathogens in general seems to target areas of the body that are damaged or weak. Theoretically, if you get a neck injury such as whiplash, pathogens like Lyme can migrate to that area where the connective tissue has been damaged and cause more inflammation. This is most likely what happened in my situation.

I believe MCAS is also a result from the dysregulated immune system and from damage of the vagus nerve as the vagus nerve has a role of regulating mast cells. All of this is multifaceted and shows why the disease becomes so chronic and hard to recover because it's like a constant negative feedback loop. The structural biomechanical issues affect the pathogens in allowing them to thrive, and the pathogens make the structural issues worse. There is most likely an intimate relationship between structural issues/neck instability and pathogens causing the formation of dysautonomia. All this contributes to the body not being able to function, recover, and work right. All the inflammation that gets generated from these pathogens and instability affects the brain by causing vast amounts of neuroinflammation and activating microglial cells.

I believe the symptom of Post Exertional Malaise in ME/CFS could also be a result of neural strain from biomechanical stress on the spine and craniocervical junction. Whenever anyone exercises or moves it will cause micro damage to the neural structures because of weak connective tissue. This would then result as the symptoms of PEM due to the cell stress that gets inflicted. Cerebral Hypoxia and increased brain lactate should also be investigated as the drivers of PEM. However PEM could just be a result of the severe lack of energy that comes with not being able to provide cells enough ATP. Whenever you exceed the energy threshold your body goes into shutdown mode to try to replenish the energy you just expended. This will happen regardless if you use too much mental or physical energy.

Any physical or emotional stress during this time most likely greatly contributes to someone becoming chronically ill and getting trapped. Whether it's stress from your job, school, relationships, or physical stress like overtraining, an injury, or pushing yourself to exercise when sick, all puts stress on your immune system and body. This can then allow the pathogens to take over and cause more harm due to the immune system depression.

Disruptions to the gut microbiome and how the bacterial flora behave most certainly contributes to the disease process. The pathogens themselves along with weak vagal tone set up the gut for dysbiosis. Any sort of pancreatic enzyme insufficiency, insufficient bile release, and poor guy motility will also contribute to dysbiosis and nutrient malabsorption. SIBO and bacterial overgrowth will create toxic metabolites that affect the brain and nervous system. SIBO will not allow your gut to absorb vitamins and nutrients from food. It also affects how the immune system behaves by dysregulating it since the majority of the immune system is in the gut. All in all I believe this is what causes the symptoms seen in ME/CFS as well as POTS.

Let me know your thoughts

- Jwarrior77
 
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However, Toxoplasmosis should be a prime suspect in the driver of this metabolic dysfunction as I believe it messes with the IDO1 gene and pathway.
It would seem that this critter could be located and confirmed.....if its a parasite, somebody can find the parasite with tissue biopses.

The rest of the fatigue is most likely from chronic inflammation, cytokines, increased lactate, and cell stress from the pathogens in the body.
There are also heavy metals and stored toxins in tissue, in CSF, lymph, muscle. Likely contributing or a secondary factors that trigger- more severe illness.

kill along with brainstem
I think the collagen loss, stimulated by viruses like EBV- leads to the mechanical problems, increased drop of the brain stem, more weakening of the neck: and our symptoms worsening over time. Vagus is cruising right past all this area of collapsed, inflamed, squeezed tissue. Lots of tissue swelling here.

a huge aspect of this illness, energetically speaking- is dryness. The yin deficiency (the chinese might call it, call it in me, at least). How can things flow if its dry? How can the brain be cleansed? How can lymph flow? Then we have: a stagnation of blood- the non deforming red blood cells for instance, they are't flowing, either. Air hungar- oxygen not reaching the end organs. Its there in the blood, its not reaching where it needs to get delivered to.

I work on this dryness all the time.
 
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I think you did a great summary of many of the connections identified in this group of illnesses. And that you did an awesome job making connections between them. Nice work :). I think theorizing about how important findings fit together is helpful and important so I think you should circulate this to us, researchers, doctors. It will add to other theories that tie together many things, that get discussed between us, presented at conferences or are discussed between doctors and between researchers. Many doctors and researchers don't get to attend a lot of conferences. And furthering our cause through our own grassroots science (hypothesizing) and advocacy can move the needle. Might have short term benefits for people and their doctors who see it. If you were to do that, how would you go about it? What help would you need?

I believe there are other, maybe many other, connections between the things you talked about. Links us, doctors, researchers, can chime in about, and links yet to be known or suspected. But I think that's a given and was very comprehensive for one person's take on all of those topics. One would be, why does eds that's been genetically acquired, commonly occur with several other conditions? Endometriosis, ME, dysautonomia, mcas, others. Many have, say, mcas, ibs, and dysautonomia but no ME, for example. There's probably a few or several reasons and I believe that some but not all of those reasons have to do with the spine or with instabilities that often get created in it or in any of the joints. I think the ways connective tissue throughout the body is involved in the immune system (including how infections are navigated, autoimmunity, mast cells) have been being investigated and will be more.
 

LINE

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Best quote I heard "Chronic Fatigue is caused by Chronic Toxicity which comes from Chronic Infections". I ran with this idea and it worked!

Second best idea is from Dr. Majid Ali "Leaky Cell Syndrome" that is the cell membranes are attacked via oxidative stress which weakens the integrity of the cell. Cells are comprised of a number of proteins but packed within a lipid structure. Phosphatidylcholine plays a role in this lipid structure.

I went from being bedridden nearly 20 hours per day to working full time and multiple side projects. I still have some swings but continue on my program and gain more control.

https://patrickrambling-pb.blogspot.com/2017/01/myalgic-encephalomyelitis.html

92304
 
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In my own experiments I'm focused in on my neck inflammation and dizziness. The dizziness definitely seems to be caused by fatigue, not remotely connected to the neck issues. I've noticed this hundreds of times.

As for the neck, I am stumped. Inflammation levels appear to be high, the occipital lymphs appear to be swollen and there is this swelling right in the cranial cervical junction. However if I take andrographis paniculata 2800mg of the extract, all of this disappears. If I keep taking it for a few days it clears up in a bigger way. So why is it that inflammation appears to be so high in this area? I wonder if it's due to ROS levels being high, or as Rufous put it viruses like ebv just attack that part of the body. Although I don't think I am quite at that stage yet. I feel like first the body ramps up inflammation and fights a virus in the brain, brainstem or near the tissues of the cranial cervical junction and then only when that fails after several x number of years, does the inflammation in the tissues start to weaken the ligaments and what not in that same area. This is something I was thinking of last night when I was going to off to sleep.
 

Jwarrior77

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It would seem that this critter could be located and confirmed.....if its a parasite, somebody can find the parasite with tissue biopses.



There are also heavy metals and stored toxins in tissue, in CSF, lymph, muscle. Likely contributing or a secondary factors that trigger- more severe illness.



I think the collagen loss, stimulated by viruses like EBV- leads to the mechanical problems, increased drop of the brain stem, more weakening of the neck: and our symptoms worsening over time. Vagus is cruising right past all this area of collapsed, inflamed, squeezed tissue. Lots of tissue swelling here.

a huge aspect of this illness, energetically speaking- is dryness. The yin deficiency (the chinese might call it, call it in me, at least). How can things flow if its dry? How can the brain be cleansed? How can lymph flow? Then we have: a stagnation of blood- the non deforming red blood cells for instance, they are't flowing, either. Air hungar- oxygen not reaching the end organs. Its there in the blood, its not reaching where it needs to get delivered to.

I work on this dryness all the time.

Yeah the Toxoplasma parasite is really hard to get rid of. It's a microscopic intracellular parasite. It loves brain tissue for some reason and likes to disrupt the hypothalamus. It will probably be hard to biopsy. I just know that it's super common to be infected with. I got tested for antibodies to it and I came back positive. There's some anti parasitical medication you can go on for it but other than that it's hard to do much.

I totally forgot to add EBV and heavy metals into the equation. Thanks I'll update the post with that as I know it can be a real problem for a lot of people with ME.

You make a really good point about Epstein Barr and lymph drainage. And how all the inflammation and swelling might disrupt the vagus nerve since it's right there in the brainstem. My lymph nodes are still swollen to this day despite testing negative for EBV. I think a bunch of these pathogens probably all do something to the body where collagen starts getting destroyed or depleted and its probably has to do with multiple pathogens. Having stagnant lymph flow will not allow the body to detoxify.

I appreciate your reply and thoughts on this!
 

LINE

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Yeah the Toxoplasma parasite is really hard to get rid of. It's a microscopic intracellular parasite. It loves brain tissue for some reason and likes to disrupt the hypothalamus. It will probably be hard to biopsy. I just know that it's super common to be infected with. I got tested for antibodies to it and I came back positive. There's some anti parasitical medication you can go on for it but other than that it's hard to do much.

I totally forgot to add EBV and heavy metals into the equation. Thanks I'll update the post with that as I know it can be a real problem for a lot of people with ME.

You make a really good point about Epstein Barr and lymph drainage. And how all the inflammation and swelling might disrupt the vagus nerve since it's right there in the brainstem. My lymph nodes are still swollen to this day despite testing negative for EBV. I think a bunch of these pathogens probably all do something to the body where collagen starts getting destroyed or depleted and its probably has to do with multiple pathogens. Having stagnant lymph flow will not allow the body to detoxify.

I appreciate your reply and thoughts on this!
Toxoplasmosis is considered to be a self-limiting infection, that is the immune system is able to eradicate it. I host a protozoa parasite forum and read through lots of literature, usually the recommendations for eradication are not adequate. For instance the duration of medication is much too low and the meds recommended may not be the right ones.

For those intereested, lymph congestion is a major treatment strategy in Ayurveda. I recently added the herb Manjista which is prized for lymph and blood cleansing. Decent results so far but I learned to go slowly.


 
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For those intereested, lymph congestion is a major treatment strategy in Ayurveda. I recently added the herb Manjista which is prized for lymph and blood cleansing. Decent results so far but I learned to go slowly.
yes I go thru the chinese medicine version- the issue for me seems to be I'm so extremely polluted I can;t seem to pull out- making my brain fog and vision issues simply really almost unbearable.

I was literally taking one spoonful of something once a week, thats i'm supposed to take three times daily!