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

Avenger

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Dear All,
I have been ill with ME/CFS symptoms and even diagnosed with Fibromyalgia for 18 years but was recently diagnosed as D-Lactic acidosis which is a form of Bacterial Overgrowth, which may be the cause of illness in a subset of ME/CFS patients.


I have recently been formally diagnosed with D-Lactic acidosis (without short bowel syndrome) in February 2017. The same symptoms were misunderstood or ignored by Doctors for so long because all other tests had been virtually normal.

I have been trying to make others aware of the similarity of ME/CFS to D-Lactic acidosis that Sheedy et al have written about and reported on after finding D-Lactic producing bacteria in CFS patients (report below).

D-la causes Flu like symptoms, fatigue, muscle weakness, breathing difficulty, difficulty thinking, neurological symptoms and pain; but symptoms can be far more serious during exacerbations. Some consultants believe that D-La may be greatly under diagnosed because some patients have borderline symptoms and symptoms are known to fluctuate. I also believe that there may be more than one form of Bacterial Overgrowth that can cause a range of variants and different symptoms through the production of different Organic Acids; which in D-Lactic acidosis, the production of D-Lactate is a neurotoxin and poison that enters spinal fluid to cause multiple systemic symptoms.

IBS and SIBO are forms of Bacterial Overgrowth as is C.Diff and I believe that Fecal Transplant from a suitable donor may reverse these conditions depending on causation (there are a number of conditions including Diabetes that can cause also cause Bacterial Overgrowth).

D-La can be a very serious condition and I had neurological symptoms very similar to Jennifer Bria which would fluctuate from mild to extreme and had varying symptoms ranging from muscle pain and weakness, slurred speech, difficulty thinking to confusion, fatigue and breathing difficulty as though I had climbed a mountain without oxygen, hypoglycemia or dizziness along with abdominal symptoms, difficulty after eating carbohydrates and periods of sometimes severe abdominal pain and sickness.

I was diagnosed after noticing that my symptoms would temporarily stop after using antibiotics (metronidazole). I made an appointment with a Consultant Gastrointerologist who specializes in D-Lactic acidosis and was virtually diagnosed on the spot because I respond to antibiotics. In D-La Carbs and sugars cannot be properly metabolised and cause fluctuating levels of D-Lactic acid which can be found in spinal fluid causing neurological symptoms that act much like a poison.

Anyone with these symptoms or who respond to antibiotics can test themselves for D-La through total 0% abstention diet for all Carbohydrates and simple sugars. Results can take 64 plus hours and remaining on the diet for 4 to 6 weeks could be life changing as it was for me! Dr. Sarah Myhill has been advising the same diet for ME/CFS patients for years. The diet is difficult and symptoms will return if it is failed, even small amounts of Carbs and Sugars can cause the return of symptoms. The diet should only be considered after consulting a Doctor to make sure that it is appropriate.

I believe that this may be an environmental issue because it is man made; Antibiotics alone can select for different forms of Bacterial Overgrowth (an unnatural form of selection). The huge amount of antibiotics used in both medicine, and farming under battery conditions and early weening of piglets that are taken away from their natural immunity mean that animals are fed antibiotics that enter meat and water systems. Antibiotics select for Overgrowth in the Gut through giving some Bacterial Species an advantage through Resistance and disadvantage other Bacteria to cause an unbalanced microbiome which processes our foods. Gut Bacteria also produce 90% of Seratonin and other vital neurotransmitters, that affect our brain function and mood.

D-Lactic acidosis acts as a hidden infection, because there is no raise in temperature due to only metabolites in the form of D-Lactic acid entering the blood stream; although the metabolites can also cause leaky gut through damage to the mucosal lining, which can cause secondary problems including autoimmune disease.

Increased D-Lactic Acid Intestinal Bacteria in Patients with Chronic Fatigue Syndrome
  1. JOHN R. SHEEDY1,
  2. RICHARD E.H. WETTENHALL1,
  3. DENIS SCANLON2,
  4. PAUL R. GOOLEY1,
  5. DONALD P. LEWIS3,
  6. NEIL MCGREGOR4,
  7. DAVID I. STAPLETON1,
  8. HENRY L. BUTT5 and
  9. KENNY L. DE MEIRLEIR6
+Author Affiliations

  1. Kenny.De.Meirleir@vub.ac.be

Next Section
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 (3.5×107 cfu/L and 9.8×107 cfu/L respectively) were significantly higher than those for the control group (5.0×106 cfu/L and 8.9×104cfu/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 13C-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.

see the full report online.


Paul.
 
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Nice job, I like it.

I remain convinced the breakdown of collagen is mixed into this whole physiological equation.

Do you include the Metabolic Trap concept (sorry, I'm just immediatley forgetful often)?

I experienced an intensification of the illness- and so I also think that NO3- might- have exploded in my intestines and further trapped me. This part- I cannot entirely rule out here.
 
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Do you include the Metabolic Trap concept (sorry, I'm just immediatley forgetful often)?
No, I dont really think the metabolic trap is accurate although the very general concept of instability could be and is not incompatible with some level of external trigger. However if the metabolic trap turns out to be true I'll be happy and eat my words... bc it would be easier to fix than my theory
 

Stretched

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[QUOTE="debored13, post: 2288913, member: 31864... bc it would be easier to fix than my theory[/QUOTE]

‘You posted that you were at a level ‘1’. What is your reference, e.g. Is ‘10’ your best or worst; curious
if you’r hurting or doing okay?
 
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sometexan84

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My theory is that the fatigue, PEM, and sleep issues from CFS are due to cellular energy metabolism dysfunction (w/ or w/out mitochondrial dysfunction), and autonomic nervous system dysfunction.

These two things can be the end result, the direct cause of the fatigue. I believe we mostly share this.

However, I believe we take different paths to get to these dysfunctions. And I believe that we end up w/ different severity of these dysfunctions.

My theory is that we have different paths that lead to the same result, only w/ different severity levels.

I also believe in the idea that there are different sub-sets of patients. Many have different symptoms, like severe pain, where others have little to no pain. Some have genetic predispositions, whereas others do not.

Regardless, there appear to be many elements that can cause or contribute to cellular energy dysfunction, as well as autonomic system dysfunction.
  • Infections
  • Gut dysbiosis
  • CCI
  • Immune deficiencies
  • Stress
  • Intestinal permeability
  • Diet, nutrition, exercise
  • Sleep
  • Autoimmunity
  • Inflammation
  • Genetics
  • Hormones
  • Brainstem or Vagus Nerve defect, etc etc etc
You could make a huge list, there are dozens upon dozens. Some have very different combinations of these and w/ varying levels of severity. The thing that makes CFS difficult, is that many of these elements are interlinked, where A could trigger B, and B could actually then exacerbate A. Which could then trigger C. Where everything just makes everything else worse.

I couldn't find the graph I wanted to show. But this one kind of displays this type of compounding, interlinked dysfunction. I don't think this graph is perfect, but it's the best one I could find just now to show these interconnections.

1596402555941.png
 

morgan_25

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I believe that ME takes root after you had been sick with a virus. I think that the virus either does so much damage to the person’s immune system, or they already have a weekend immune system of which they didn’t know, which then allows ME to settle in. I don’t necessarily believe it must always be a reactivation, as mine is not, I am still in my initial EBV illness and have been for the past 11 years. Of course though, when reactivation does occur, it seems to be a completely different animal than the initial illness. I can only really speak regarding EBV, because as far as I know, I don’t have much experience with any other ones, however there does seem to be a strong link between EBV, CMV, HHV, etc. I believe that the EBV has been in my body so long that it now has made a home in the tissue of my body. I think this in itself can cause your immune system to be compromised, then you end up with multiple different kinds of illnesses. Autonomic dysfunctions, for example, I have POTS. I definitely feel than ME is more of a horrible result of a serious illness such as a virus, not the other way around.

It is really hard to know which came first, the bad immune system, or the virus. For the virus to become to vicious in only some people, it leads me to believe that the bad immune system comes first, although we may have felt super healthy before. Before I had gotten EBV when I was 14, I thought I was super healthy. I was extremely active, didn’t get sick a whole lot, had a ton of energy, but that all changed after I had EBV. The only thing that I can think that holds significance regarding my health before EBV, is that I had SEVERE allergies. This may have led to a compromised immune system that was the perfect place for the virus to multiply, live, and thrive in. I am curious to know if any of you guys have extreme allergies and if it seems to play a significant role in your ME and/or viruses.
 
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The only thing that I can think that holds significance regarding my health before EBV, is that I had SEVERE allergies. This may have led to a compromised immune system that was the perfect place for the virus to multiply, live, and thrive in. I am curious to know if any of you guys have extreme allergies and if it seems to play a significant role in your ME and/or viruses.
I don't/ didn't have IgE allergies before or after me/cfs, but do have MCAS and different sorts of inflammatory responses to mold and toxins. I certainly think thats an important part of me/cfs etiology
 

morgan_25

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I don't/ didn't have IgE allergies before or after me/cfs, but do have MCAS and different sorts of inflammatory responses to mold and toxins. I certainly think thats an important part of me/cfs etiology
Absolutely! I am still convinced too that there must be a link between MCAS and allergies as well, since it is a series of allergic type episodes. MCAS causes MULTIPLE issues as well from urinary tract, GI, Neurological, skeletal, and respiratory issues. It is crazy how it can affect all different parts of the body in different ways.

I suspect that I may have MCAS as well, but I have never been tested for it. What kind of tests do they run in order to make that diagnosis?
 

sometexan84

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I thought for a while allergies were involved, but I don't really think so anymore (in my case). It was viral sinus issues instead.

The Mast cell issues, MCAS I actually think are slightly more common in CFS than people in this forum realize. Of course, I might change my mind on that after I get my most recent results back. I change my mind a lot :)

But all the things discussed here, most of it I agree with, and most of this stuff we've all heard a bunch of times. So to mix things up a bit, I'll throw in a theory that does not get talked about much at all in CFS.

In addition to the other stuff we mention all the time, I am starting to believe more and more that very low viral infections can contribute to CFS. For instance, I'm concerned that my super low positive HHV-6 titers (which we are taught to largely ignore) could have a much greater impact on my condition than what I initially thought. I felt that way quite a bit more when I got this response from Dr Prusty the other day

1596597262372.png
 

sometexan84

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What kind of tests do they run in order to make that diagnosis?
Hey! I got the notes for that!
 
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Absolutely! I am still convinced too that there must be a link between MCAS and allergies as well, since it is a series of allergic type episodes. MCAS causes MULTIPLE issues as well from urinary tract, GI, Neurological, skeletal, and respiratory issues. It is crazy how it can affect all different parts of the body in different ways.

I suspect that I may have MCAS as well, but I have never been tested for it. What kind of tests do they run in order to make that diagnosis?
I have trouble with the concept of mcas as its used to blanket describe all environmental sensitivies
 

morgan_25

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I thought for a while allergies were involved, but I don't really think so anymore (in my case). It was viral sinus issues instead.

The Mast cell issues, MCAS I actually think are slightly more common in CFS than people in this forum realize. Of course, I might change my mind on that after I get my most recent results back. I change my mind a lot :)

But all the things discussed here, most of it I agree with, and most of this stuff we've all heard a bunch of times. So to mix things up a bit, I'll throw in a theory that does not get talked about much at all in CFS.

In addition to the other stuff we mention all the time, I am starting to believe more and more that very low viral infections can contribute to CFS. For instance, I'm concerned that my super low positive HHV-6 titers (which we are taught to largely ignore) could have a much greater impact on my condition than what I initially thought. I felt that way quite a bit more when I got this response from Dr Prusty the other day

View attachment 38633
I guess I never really thought much about rather a low positive titers test meant anything other than positive. But as I may have mentioned to you, I can’t really remember, all of my test so far I don’t think have been titers it’s always just been a positive/negative test. That being said, I can’t speak much on that topic regarding low or high titers test unfortunately.
 
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I thought for a while allergies were involved, but I don't really think so anymore (in my case). It was viral sinus issues instead.

The Mast cell issues, MCAS I actually think are slightly more common in CFS than people in this forum realize. Of course, I might change my mind on that after I get my most recent results back. I change my mind a lot :)

But all the things discussed here, most of it I agree with, and most of this stuff we've all heard a bunch of times. So to mix things up a bit, I'll throw in a theory that does not get talked about much at all in CFS.

In addition to the other stuff we mention all the time, I am starting to believe more and more that very low viral infections can contribute to CFS. For instance, I'm concerned that my super low positive HHV-6 titers (which we are taught to largely ignore) could have a much greater impact on my condition than what I initially thought. I felt that way quite a bit more when I got this response from Dr Prusty the other day

View attachment 38633
to be fair, what dr prusty is saying is just a theory. he has only shown hhv-6 can fragment mitochondria in vitro im pretty sure
 

morgan_25

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I have trouble with the concept of mcas as its used to blanket describe all environmental sensitivies
I think a lot of people think that way about ME though, and we know there is a lot more to it. I think there is more to MCAS, we just don’t know enough about it yet.
 
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I think a lot of people think that way about ME though, and we know there is a lot more to it. I think there is more to MCAS, we just don’t know enough about it yet.
yeah, but what i mean is that environmentally caused inflammation probably involves more than mast cells. that it probably involves a pretty broad innate immune response involving macrophages, glial cells, etc... and also mast cells. so if it is not just focused around mast cells, would it make sense to conceptualize it as "mast cell activation syndrome"?

also most mainstream mcas doctors seem focused on it as this idiopathic thing where mast cells just overreact to things that are harmless, whereas i think its likely that what we react to, some of it is harmful to even "healthy " people