I just wanted to add that we usually talk about a "virus" but my doctor has told me that a bacterial infection could do the trick too... an infection of any sort really. We believe mine was triggered by an infection - and at the time I had an extremely severe bacterial infection going on. Or I should say it had "passed" with antibiotics, hospitalization, etc... and then a few weaks later, BAM! One day I woke up and there it was...although really I didn't feel "right" for a few days and then I woke up one day and couldn't stand because of the tachycardia and shortness of breath...

So long story short, I consider myself a sudden onset person - triggered by an infection.

ok, so this is what i am trying to understand.

when pots is caused/triggered by a virus or bacteria, does it happen immediately following the virus or bacteria? is a person sick with a virus, overcomes the actual virus, but just doesn't ever get better? or, can a person have a virus, fight it off, and then get pots out of nowhere like four months later?

and if this is the case, then does that mean that virus-induced pots occurs in people who are genetically prone to it? because why else would more people not get sick, get better and then wham! get pots? how can that happen? and how is it possible that virus or bacteria induced pots is more likely to be overcome in 2-5 years?

Let me explain differently.

This is in answer to Viruses or bacteria related:

Let's say you have a genetic mutation in your methylation cycle.

Bare with me folks. I know you're tired of hearing about the methylation cycle and I know it can be complicated, but here we go....

Let's say you have a genetic mutation in your methylation cycle for example. The methylation cycle isn't a seperate thing. This is I guess you could say where the immune system and the endocrine system overlap.
With a mild genetic mutation you could go for years holding up against different viruses and bacteria. The methylation cycle aids in ridding your body of toxins. But if you have a mild genetic mutation in this detoxification system it cannot sustain the type of resistance you continually need throughout your life.

Put it this way--- let's say you have a coffee filter. Let's say there's an ever so slight tear in that coffee filter to begin with. Fairly small. Doesn't seem to pose a problem at first. But then after tons of water and coffee are dumped into over time, pot after pot, the tear will begin to increase. Pretty soon you have a gaping hole and a big mess of coffee grinds dumping into your coffee pot or mug. You need a knew coffee filter.

With healthy people who don't have a mutation--- their bodies don't already have a tear in the coffee filter from the get go AND they are able to replenish the material of the coffee filter so it sustains itself. It has strength. It holds up 10 times longer.

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For some-- What can happen is there's build up of toxins from the defunct methylation cycle because over time the toxins it should be filtering out aren't being filtered out. So you're weakened by this over time. Simply put: Toxins aren't good for the body. They'll make you ill. And once you are weakened, then you're prone to all sorts of viruses and bacteria. So not only are you eventually weakened in day to day activity, but when substantial illnesses come your way--- there's no freakin way in hell you can withstand at that point. And the viscious cycle continues.

For others-- What can happen is so far somehow they've managed all these years with that small tear growing bigger in their body's filter. No substantial symptoms of a weakened body show. And then a big virus comes along like Cytomegalo Virus, or Lyme's Disease, etc etc. And that does it. The filter cannot hold up to that huge blow. That's the filter's Kryptonite. And then once ill with that disease that you couldn't withstand--- Guess what? You have even MORE toxins you need to purge. Ailment upon ailment builds.

Because the amount of toxins going into your body is much more then the amount that is being filtered out of your body in time.

What ends up happening is the body tries desperately to compensate. And you know how taking a prescription can sometimes help the problem but then give you another awful side effect symptom? Well you're body inadvertantly starts doing that to itself.

So one thing goes wrong, then another organ or system says "Hey let's release this hormone to compensate", then another body system says "Well wait a minute, if you're going to do that then in order to make up for what that hormone is doing to us, we are going to have to now release this neurotransmitter", .....and so on and so on.

Like when I was put on Florinef to make up from the horrible side effects of the beta blocker. And then I had side effects from the Florinef....... never ending cycle.

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And side note: Amino acids are so incredibly vital it's ridiculous. If there's a screw up in the methylation cycle then your amino acid levels are becoming imbalanced which can lead to separate health issues regardless of the toxin build up. Like homocysteine for example. Let's say I didn't have enough of the amino acid that turns homocysteine into XYand Z. So then homocysteine builds up. Homocysteine does great damage to the vascular system--- Over time. In fact atherosclerosis can start late teens early twenties....... it just won't be noticeable to a lot of people until they have a heart attack or stroke.

You're screwed layer upon layer of being screwed.

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I hope this made sense. I honestly don't know that I could describe it any better so I hope this made sense.

My take on it is this - at least in my situation - the infection damaged the nerves. Hence the autonomic neuropathy. Which causes my problems. The sudomotor (sweating) and vasomotor (vessel constricting) fibers.

nitekitty, it was a very good explanation.
so may i ask, what is your diagnoses? do you have dysautonomia as a result of a faulty methylation cycle? and you found out about that because you had your amino acids tested?
are there any tell-tell signs of an imbalance or issues with amino acids? or could any of us be suspect?
thanks for your explanation. it was very clear and thorough!

i think that this site does a good job of describing the methylation cycle:

http://www.drmyhill.co.uk/article.cfm?id=401

Forgive me, I'm in a hurry, so I may have to add more later.

It would seem that yes, I have dysautonomia due to a faulty methylation cycle. Only because A) amino acids in the methylation cycle were imbalanced (homocysteine significantly) and B) Taking supplements to help restore the methylation cycle function seems to be working.

One tell tale sign for some methylation cycle problems would be an allergy to sulpha antibiotics. In actuality it is not an allergy like we think of. The body is already overloaded with sulfur atoms from amino acids like Homocysteine and there aren't enough methyl compounds to bind to the sulfur to take it effectively through the methylation cycle, eventually out of the body. So then you take a sulfa antibiotic and have a negative autonomic response.

Different amino acid problems that are indirectly related to the methylation cycle would be Ehlers-Danlos Syndrome and mild hypermobility problems. These amino acids include:
(the following builds the composition of connective tissues)
proline
hydroxyproline
glycine
valine
leucine
isoleucine
alanine
homocysteine (breaks down connective tissue and has an effect on the levels of connective tissue building amino acids)

Another indirect problem would be needing to eat lots of meat protein in order to not "crash". This is a sign of a Carnitine deficiency. Malfunctioning of the methylation cycle can cause this deficiency.

Of course Chronic Fatigue is a tell tale sign of a malfunctioning methylation cycle.

***Side note**** In regard to "damaged nerves"--- High levels of homocysteine break down the myelin sheaths of nerves, which protect the nerves. Those myelin sheaths are composed of connective tissue amino acids. Nerve damage is highly plausible if either the sheaths don't have enough stuff that make up their composition or if homocysteine is breaking down their composition.

re: Since nerves can repair themselves, even though they do that very slowly, it allows for a recovery over a span of time.

This is basically what my specialist said is how my recovery will happen. That the nerves have to rebuild themselves. And why he said he is concerned about my age (40) because when you are older, you body does not rebuild itself as quickly.

gracietiger-- FANTASTIC LINK you posted!

Here folks........ here's a taste.......

The Methylation Cycle
Rich Van Konynenburg's idea is that ineffective methylation is a major cause of fatigue. There are many possible reasons but those that he's identified for which methylation is essential to are:

To produce vital molecules such as Co Q-10 and carnitine.

To switch on DNA and switch off DNA. This is achieved by activating and deactivating genes by methylation. This is essential for gene expression and protein synthesis. Proteins of course make up the hormones, neurotransmitters, enzymes, immune factors and are fundamental to good health. When viruses attack our bodies, they take over our own DNA in order to replicate themselves. If we can't switch DNA/RNA replication off then we will become more susceptible to viral infection.

To produce myelin for the brain and nervous system.

To determine the rate of synthesis of glutathione which is essential for detoxification.

To determine the rate of synthesis of glutathione which is an essential anti-oxidant as glutathione-peroxidase. Furthermore oxidative stress blocks glutathione synthesis - yet another vicious cycle!

To control sulphur metabolism of the body, not just glutathione but also cysteine, taurine and sulphate. This is an important process for detoxification.

As part of folic acid metabolism. This also switches on synthesis of new DNA and RNA.

For normal immune function. The methylation cycle is essential for cell mediated immune function and blockages here will mean that infections will not be adequately dealt with. I know this clinically because many patients tell me that once they get on to their B12 injections (an essential co-factor for methylation) this seems to protect them from getting infections.

The overall effect here is that if the methylation cycle doesn't work, the immune system mal-functions, the detoxification system mal-functions, our ability to heal and repair is reduced and the anti-oxidant system mal-functions.

"The following symptoms of CFS have been reported to have been corrected by various PWCs on this treatment. Note that these are gathered from reports from many PWCs, so that not all have been reported by a single person.

Improvement in sleep (though a few have reported increased difficulty in sleeping initially).

Ending of the need for and intolerance of continued thyroid hormone supplementation.

Termination of excessive urination and night-time urination.

Restoration of normal body temperature from lower values.

Restoration of normal blood pressure from lower values.

Initiation of attack by immune system on longstanding infections.

Increased energy and ability to carry on higher levels of activity without post-exertional fatigue or malaise. Termination of "crashing."

Lifting of brain fog, increase in cognitive ability, return of memory.

Relief from hypoglycaemia symptoms.

Improvement in alcohol tolerance

Decrease in pain (though some have experienced increases in pain temporarily, as well as increased headaches, presumably as a result of detoxing).

Notice of and remarking by friends and therapists on improvements in the PWC's condition.

Necessity to adjust relationship with spouse, because not as much caregiving is needed. Need to work out more balanced responsibilities in relationship in view of improved health and improved desire and ability to be assertive.

Return of ability to read and retain what has been read.

Return of ability to take a shower standing up.

Return of ability to sit up for long times.

Return of ability to drive for long distances.

Improved tolerance for heat.

Feeling unusually calm.

Feeling "more normal and part of the world."

Ability to stop steroid hormone support without experiencing problems from doing it.

Lowered sensation of being under stress.

Loss of excess weight."

nitekitty,
I am a bit confused. Do you believe that we ALL have problems with our methylation cycle? If so, are you saying that for those of us who have "post-viral" dysautonomia with autonomic neuropathy that our methylation cycle was fine pre-illness and then got screwed up and THAT'S what caused all of the problems? Or is it possible it's more complicated than that? I don't mean to sound skeptical because I know you do a lot of research on this subject but I just have a hard time believing that if it were just a matter of rebalancing my amino acids my doctor wouldn't have mentioned that. I do appreciate all you input - Thanks!