Im outta here. Thank you for everything.

gregh286

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This will be my last post and hopefully (without sounding mean) last visit here. I want to say a big thank you to PR for the wealth of knowledge and support it provides us, I have now almost totally recovered and have identified root cause and treatments with high effectiveness.

My ME was a slow onset that really come to peak in 2012, although i had sporadic energy crashes back to 1999. Alcohol abuse being my CFS trigger. But in 2012 also continual CFS pressure on body seemed to bring adrenals also to halt, this brings all the crazy symptoms.....feeling of impending doom,,,racing HR,,,unable to hold conversation ,,,lobido loss,,,unstoppable emotions,,,,mad hormonal stuff. This HPA nightmare takes CFS to a new level. Now my adrenals seem 100% fine but took many years to get them back...

Certainly toxin exposure and chemical abuse sends the body into a protection mode, its no wonder so many Gulf veterans come down with it. I realised that carbs are a total no-no when CDR (cell defence response) is turned on,,,I call it carb dumping,,,,its the mother of all crashes when CDR is on and you starting pumping in glucose,,,,,body just becomes a metabolic waste dumping ground...heavy brain fog, lactic legs,,,.pretty sure the researchers will find out the carb part of krebs is totally dynsfuctional in CDR,,,PDH enzyme,,,,COA,,,etc,

I think a keto diet doesn't get the results as certainly CFS brings about major HPA issues, until they are resolved then keto i would think would be pretty fruitless.
ALA is the best supplement i ever used,,,,its a total mopper up of all things metabolically toxic. I can gauge it by hand numbness whether i need more or less. It brings HR down during exercise unbelievably well which obviously improves aerobic thresholds by some margins. HR under exercise always a good measure of our CFS ability.For men also, high doses of glutamine is an excellent power replacement in crashes.
So, I not sure what to make of that, but in lay terms i just assume that our blood is so full of metabolic toxin from almost non existent carb burn into krebs, that ALA is quite effective to remove this hazardous waste.

I pretty much eat normal now, as my trigger is removed and krebs cycle resumes normal function, but in event of a backslide, CFS symptoms do return, maybe it will be like this for rest of my days,,,I'm not sure.

So, yes CFS is recoverable, I count myself lucky as my trigger is avoidable, for viral onsets PWME I hope they can find a way out for you soon.
I truly wish everyone the best for their future and keep the faith for the great progress made in research in the past few months,

I will reply any questions to the thread, or email me gregh286@hotmail.com

Warm regards.
G.
 
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Sad to see you go, but glad you feel better!.

Since we both got a lot of benefit from whey, I'm hopeful that maybe your case and my case have some overlap and I can keep improving too!

I must try giving up carbs. Only problem is every time I do I feel *appalling* so I've never stuck to it.
 

mariovitali

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@gregh286


Really glad you made it. It is interesting that you are able to take Whey Protein without any symptoms.


What is more interesting -at least for me and the Liver Theory i have been trying to move forward- is the fact that you state that Alcohol abuse was your ME/CFS trigger.

@Hip do you have any comment on this? I am tagging you since it appears to me that you are mostly inclined towards the viral aspect of ME/CFS.
 
Congratulations on your progress.

ALA is a great supplement, but people can get into trouble with it under certain conditions.

It's a cofactor for the citric acid/Kreb's energy cycle, so it will give natural feeling energy. It's an antioxidant. But it also converts to a mercury chelator. This is where the trouble can come in.

Mercury is an inhibitor in the carbohydrate pathway, citric acid cycle, methylation cycle and many other cycles and pathways in the body. I believe that many of us have mercury and other toxic metals. Most people aren't aware of it because it's tricky to detect. Mercury is colorless and odorless. It's unfortunately ubiquitous in our environment.

So it's not like the carbohydrate pathway magically stopped working, so that causes a build up of toxins. It's the other way around - there was toxin exposure and that inhibited various pathways from working well, including, ironically the detoxification pathways. That can create a self perpetuating downward spiral or metabolic trap.

If ALA isn't take on it's half life, it can cause mercury redistribution, which can cause mercury toxicity symptoms. That makes me concerned about the numb hands symptom.

See the Cutler chelation info in my signature link for more info.
 

gregh286

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Congratulations on your progress.

ALA is a great supplement, but people can get into trouble with it under certain conditions.

It's a cofactor for the citric acid/Kreb's energy cycle, so it will give natural feeling energy. It's an antioxidant. But it also converts to a mercury chelator. This is where the trouble can come in.

Mercury is an inhibitor in the carbohydrate pathway, citric acid cycle, methylation cycle and many other cycles and pathways in the body. I believe that many of us have mercury and other toxic metals. Most people aren't aware of it because it's tricky to detect. Mercury is colorless and odorless. It's unfortunately ubiquitous in our environment.

So it's not like the carbohydrate pathway magically stopped working, so that causes a build up of toxins. It's the other way around - there was toxin exposure and that inhibited various pathways from working well, including, ironically the detoxification pathways. That can create a self perpetuating downward spiral or metabolic trap.

If ALA isn't take on it's half life, it can cause mercury redistribution, which can cause mercury toxicity symptoms. That makes me concerned about the numb hands symptom.

See the Cutler chelation info in my signature link for more info.
Phew. Thanks for that.
@gregh286


Really glad you made it. It is interesting that you are able to take Whey Protein without any symptoms.


What is more interesting -at least for me and the Liver Theory i have been trying to move forward- is the fact that you state that Alcohol abuse was your ME/CFS trigger.

@Hip do you have any comment on this? I am tagging you since it appears to me that you are mostly inclined towards the viral aspect of ME/CFS.
Yes, actually alcohol was main trigger but i,had other triggers.......wheat flour.....MSG....few other things.
So I don't know if I am pathogically poor detoxifier that I get bad reaction from toxin ingestion.
 

Hip

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What is more interesting -at least for me and the Liver Theory i have been trying to move forward- is the fact that you state that Alcohol abuse was your ME/CFS trigger.

@Hip do you have any comment on this? I am tagging you since it appears to me that you are mostly inclined towards the viral aspect of ME/CFS.
In order to scientifically determine what factors might be possible triggers or causes of ME/CFS, you have to perform a study on a large group, and see if certain factors are statistically associated with ME/CFS.

For example, studies have shown that significant exposure to organophosphate or organochlorine pesticides is statistically a risk factor for ME/CFS. One study in Scotland found the prevalence of ME/CFS among farmers with significant organophosphate pesticide exposure to be 4 times higher than the normal UK prevalence.

You cannot determine risk of trigger factors in any other way. So when someone is guessing that their trigger factors were alcohol, wheat, MSG or whatever, that does not really mean anything. You simply cannot determine triggers in this guessing way, without conducting a statistical study.

If you wanted to show that alcohol abuse was trigger or risk factor for ME/CFS, you would have to conduct a study on alcoholics, and demonstrate a higher rate of ME/CFS among alcoholics.
 
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pamojja

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Congratulations!

ALA is the best supplement i ever used,,,,its a total mopper up of all things metabolically toxic. I can gauge it by hand numbness whether i need more or less. It brings HR down during exercise unbelievably well which obviously improves aerobic thresholds by some margins. HR under exercise always a good measure of our CFS ability.
May I ask, what doses of ALA you took? And at what intervals? Are you still taking some?
 

mariovitali

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In order to scientifically determine what factors might be possible triggers or causes of ME/CFS, you have to perform a study on a large group, and see if certain factors are statistically associated with ME/CFS.

For example, studies have shown that significant exposure to organophosphate or organochlorine pesticides is statistically a risk factor for ME/CFS. One study in Scotland found the prevalence of ME/CFS among farmers with significant organophosphate pesticide exposure to be 4 times higher than the normal UK prevalence.

You cannot determine risk of trigger factors in any other way. So when someone is guessing that their trigger factors were alcohol, wheat, MSG or whatever, that does not really mean anything. You simply cannot determine triggers in this guessing way, without conducting a statistical study.

If you wanted to show that alcohol abuse was trigger or risk factor for ME/CFS, you would have to conduct a study on alcoholics, and demonstrate a higher rate of ME/CFS among alcoholics.
Couldn't agree more, however no one is doing such study to the best of my knowledge despite anecdotal mentions of several events that have one potential target : The Liver
 

gregh286

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In order to scientifically determine what factors might be possible triggers or causes of ME/CFS, you have to perform a study on a large group, and see if certain factors are statistically associated with ME/CFS.

For example, studies have shown that significant exposure to organophosphate or organochlorine pesticides is statistically a risk factor for ME/CFS. One study in Scotland found the prevalence of ME/CFS among farmers with significant organophosphate pesticide exposure to be 4 times higher than the normal UK prevalence.

You cannot determine risk of trigger factors in any other way. So when someone is guessing that their trigger factors were alcohol, wheat, MSG or whatever, that does not really mean anything. You simply cannot determine triggers in this guessing way, without conducting a statistical study.

If you wanted to show that alcohol abuse was trigger or risk factor for ME/CFS, you would have to conduct a study on alcoholics, and demonstrate a higher rate of ME/CFS among alcoholics.
Yes true hip. Need deep study. But almost everyone comes to cfs with a trigger of some description. Flu...ebv....lake tahoe.....food poisioning.....phosphates.....mercury...
 

Hip

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But almost everyone comes to cfs with a trigger of some description. Flu...ebv....lake tahoe.....food poisioning.....phosphates.....mercury...
If your triggers were standard ones known to be linked to ME/CFS, like EBV infection, enterovirus infection, pesticides, mycotoxins, and if you were hit with one or more of those just before you ME/CFS developed, then you can say with some confidence that those triggers were probable factors behind your ME/CFS.

But if a factor has no known link to ME/CFS, then even if you were exposed to it at the time your ME/CFS appeared, you cannot be really confident it played any role.



Some people think for example that any infection can trigger ME/CFS; but in fact it is only small number of pathogens that are statistically associated with ME/CFS. For example, 10% of people who get glandular fever (usually caused by EBV) will get ME/CFS; this has been shown in studies. But no one ever seems to get ME/CFS after say norovirus infection (winter vomiting bug).
 

mariovitali

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I
Some people think for example that any infection can trigger ME/CFS; but in fact it is only small number of pathogens that are statistically associated with ME/CFS. For example, 10% of people who get glandular fever (usually caused by EBV) will get ME/CFS; this has been shown in studies. But no one ever seems to get ME/CFS after say norovirus infection (winter vomiting bug).
It will be interesting to see the hypothesis as to whether viruses that are associated with ME/CFS tend to also affect Liver function.

@Hip do you have a list of all the viruses that set the stage for ME/CFS?
 

gregh286

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If your triggers were standard ones known to be linked to ME/CFS, like EBV infection, enterovirus infection, pesticides, mycotoxins, and if you were hit with one or more of those just before you ME/CFS developed, then you can say with some confidence that those triggers were probable factors behind your ME/CFS.

But if a factor has no known link to ME/CFS, then even if you were exposed to it at the time your ME/CFS appeared, you cannot be really confident it played any role.



Some people think for example that any infection can trigger ME/CFS; but in fact it is only small number of pathogens that are statistically associated with ME/CFS. For example, 10% of people who get glandular fever (usually caused by EBV) will get ME/CFS; this has been shown in studies. But no one ever seems to get ME/CFS after say norovirus infection (winter vomiting bug).
I know it's alcohol. I can trigger a brutal ME attack with it that takes days and days to get over.
 

Hip

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I know it's alcohol. I can trigger a brutal ME attack with it that takes days and days to get over.
Once you develop ME/CFS, then you often become sensitive to alcohol, and to other drugs as well. But that by itself does not imply that alcohol can cause ME/CFS.



@Hip do you have a list of all the viruses that set the stage for ME/CFS?
The main pathogens linked to ME/CFS are: coxsackievirus B, echovirus, EBV, HHV-6, cytomegalovirus, parvovirus B19 and Chlamydia pneumoniae.
 

mariovitali

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@Hip Right so here we go.


I wonder if anyone is listening. I really hope i am wrong with this.



Coxsackie Virus

Group B coxsackieviruses tend to infect the heart, pleura, pancreas, and liver, causing pleurodynia, myocarditis, pericarditis, and hepatitis (inflammation of the liver not related to the hepatotropic viruses). Coxsackie B infection of the heart can lead to pericardial effusion.
Echovirus

Echovirus disease occurs disproportionately in males and children. Infection within the first two weeks of birth can cause devastating and potentially fatal disease. In this population, death usually results from overwhelming liver failure or myocarditis, rather than infection of the central nervous system. Older children and adults have a better prognosis. Myocarditis is the most frequent complication in adults.
HHV-6

Liver failure[edit]
The virus is a common cause of liver dysfunction and acute liver failure, and has recently been linked to periportal confluent necrosis. Furthermore, HHV-6 DNA is often detectable only in the biopsy tissues as DNA levels fall below the level of detection in blood in persistent cases.[86]
Cytomegalovirus

CMV may cause either a viral syndrome or tissue invasive disease in these patients. CMV syndrome occurs within the first four months and includes fever, malaise, and upper gastrointestinal pain most commonly. Less often, diarrhea (enterocolitis) may occur. Suppression of bone marrow with decreased white blood cells (leukopenia) and platelets is common. Elevated liver enzymes (hepatitis) may occur, as well. Tissue invasive disease may include CMV pneumonia, which can be severe. Unlike HIV, CMV neurologic disease and retinitis are very unlikely in the transplant setting.

Parvovirus

Parvovirus B19 infection can present with myriads of clinical diseases and syndromes; liver manifestations and hepatitis are examples of them. Parvovirus B19 hepatitis associated aplastic anemia and its coinfection with other hepatotropic viruses are relatively underrecognized, and there is sufficient evidence in the literature suggesting that B19 infections can cause a spectrum of liver diseases from elevation of transaminases to acute hepatitis to fulminant liver failure and even chronic hepatitis.


Chlamydia pneumoniae infection was diagnosed in an elderly patient with prolonged fever and hepatomegaly and no evidence of respiratory tract infection. Laboratory investigation showed hepatitis, eosinophilia, cryoglobulinaemia and the presence of antinuclear antibodies. It was concluded that C. pneumoniae may cause an acute extrarespiratory infection as well as stimulate immunological reactions.