Re: Re: Ravenous/subject line

[Guest guest]

What does your text have to do with ravenous appetite?  Please everyone, let's

take the time to change the email subject line to reflect the text. 

Thank-you.  Kay

________________________________

From: rvankonynen <richvank@...>

Sent: Sunday, April 22, 2012 2:18 PM

Subject: Re: Ravenous Appetite

 

Hi, Steve.

Four years is a long time. I have some thoughts about why this treatment

doesn't help in some cases, which I posted to the PR forum recently. I'll

repost it here:

Hi, all.

I've written the following in order to try to see the " big picture " concerning

ME/CFS, in order to focus efforts going forward. These are my own views at

present. I of course may be wrong, and I have probably left out some important

things. I would appreciate comments. I have taken the liberty of using the

royal " we.(:-)

My goal with respect to ME/CFS is for everyone who has it to be able to

completely recover as soon as possible. I realize that this is a difficult goal

to attain, but I believe it's the goal we need to have.

So how do we work toward achieving this goal? I believe that we first have to

develop an understanding of this disorder, and that this understanding will

serve as the basis for developing effective treatment.

What aspects to we need to understand? I would say that we need to understand

the etiologies (root causes), the pathogenesis (development of the disease

process), the fundamental pathophysiology (what's the core mechanism of what's

wrong with the way the body is working in this disorder) as well as additional

contributions to the pathophysiology due to features that accumulate during the

illness after the initial onset, and the symptoms, explained on the basis of the

pathophysiology.

What do we need to treat? Based on experience up to now, I would say that we

need to treat the fundamental pathophysiology, but we also need to treat the

etiologies and the additional features that have accumulated. I have learned

this the hard way.

Again, based on experience up to now, I would say that the fundamental

pathophysiology is the same in nearly all cases of ME/CFS, and it involves a

chronic vicious circle mechanism that includes depletion of glutathione, a

functional deficiency of vitamin B12, a partial block of methionine synthase

(which links the methylation cycle with the folate metabolism), and loss of

folates from the cells. Essentially everything else in ME/CFS (other than

direct effects of pathogens or initial toxins) stems from this vicious circle.

This is elaborated in the Swedish seminar here:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%\

7D

I believe that the etiologies, on the other hand, differ from one case to

another. For the sporadic cases of ME/CFS (as differentiated from the cluster

or epidemic cases), there is an inherited genetic predisposition that is not yet

well defined, but likely consists of a collection of polymorphisms, the specific

ones again differing from one case to another.

The coexistence of an inherited genetic predisposition and some combination of a

variety of physical, chemical, biological and/or psychological/emotional

stressors is the etiology of ME/CFS, in my opinion. This variety of stressors

has in common the characteristic that they all place demands on glutathione, and

if they are sufficiently severe and long lasting in a person who has the genetic

predisposition, it appears that they will produce a large enough depletion of

glutathione to set up the chronic vicious circle mechanism that I believe is the

core of the pathophysiology of ME/CFS.

What are the additional features that can accumulate during the illness? I

believe that they are toxins and infections by various pathogens. They

accumulate because two of the body's major defense systems, i.e. the immune

system and the detoxication system, are rendered dysfunctional by the chronic

vicious circle mechanism in the pathophysiology of ME/CFS.

Where are we now in terms of treatment of the aspects that must be treated to

bring about recovery? I would say that we have a basic understanding of the

methylation treatment necessary to overcome the partial methylation cycle block

in the pathophysiology, and it has been possible to accomplish this in a

majority of PWMEs who have used this treatment. The essential part of the

treatment is a combination of a high-dosage of Vitamin B12 (of the order of 2

milligrams per day) given sublingually or by injection, and one or more active

(chemically reduced) folates at approximately the RDA for folate (400 to 800

micrograms per day). These two support the methionine synthase reaction, which

appears to be partially blocked in ME/CFS. Successful treatment usually also

includes other supportive nutrients.

However, there are still many who either experience no response from this

treatment, or who experience such severe exacerbation of symptoms from it that

they are not able to continue it. We need to identify the reasons for these in

each case, and treat them effectively.

In addition, we have found that in most cases, even though this treatment

overcomes the vicious circle mechanism and usually brings significant

symptomatic improvement, it is not the complete answer for producing total

recovery. There are many who experience improvement in their methylation cycle,

folates and glutathione from this treatment, based on repeated lab testing, but

their ratio of reduced to oxidized glutathione does not return completely to

normal, suggesting that oxidative stress continues to be present. I think this

is due to the presence of the original etiologies and/or the additional features

that have accumulated.

With regard to treating the etiologies and the additional features that

accumulate during the illness, I would say that we have had success in some

cases, but in many other cases these have not been successfully identified or

have not been successfully treated. More work is needed to identify them and to

develop treatment for them.

What are some possible reasons why a PWME would experience no response from the

methylation treatment? One obvious possibility might be that the person does

not have the vicious circle mechanism described above. Though this mechanism

appears to be fundamental to the pathophysiology of ME/CFS, there may be some

people who have similar symptoms but do not have this vicious circle. This is

one of the main reasons it is helpful to run the methylation pathways panel (I

refer here to the biochemical panel, not the genomic panel with a similar name.)

I suspect that another possibility is deficiency in one or more of the essential

nutrients for the methylation cycle and related pathways. There are several

vitamins, minerals and essential amino acids needed to support this part of the

metabolism, and many PWMEs have been found to be deficient in some of them.

Those who have hemopyrrollactamuria (HPU) are a subset of this group. Again,

testing is available to determine whether there are deficiencies. This includes

direct determination of the levels of the nutrients in the blood, measurements

of certain enzyme activities that are specific to particular nutrients, and

inferring deficiencies from metabolic tests (such as urine organic acids and

amino acids in the urine), hair mineral tests, and essential element tests in

the urine. The interpretation of hair testing is not simple or straightforward

and requires considerable understanding and experience. Testing for HPU is also

available.

Another possibility is high body burdens of one or more toxic metals, such as

mercury, that are capable of blocking enzymes in this part of the metabolism.

Testing is available to look for these in urine, blood, feces and hair, and

chelation may be needed if the levels of the toxic metals are high.

Now, what about those who find this treatment to be intolerable? There are

several categories of this. One that is very common is an increase in

excitotoxicity when the treatment is started. This involves symptoms such

insomnia, anxiety, nervousness, a " wired " feeling and hypersensitivity of the

senses. This is likely due to an initial further decrease in glutathione in the

astrocyte cells of the brain, as a result of conversion of more of the

homocysteine to methionine, so that less is available for supporting glutathione

synthesis. Sometimes lowering the dosages at first, especially of Vitamin B12

and the folates, and increasing them slowly over time, is effective. There is

also a variety of substances that may help to calm down the excitotoxicity,

including GABA, theanine, magnesium, taurine, grape seed extract, pycnogenol,

progesterone cream, and Valerian root.

Another negative reaction, which is sometimes described as a " toxic " feeling, is

probably due to mobilization of toxins by the improved sulfur metabolism,

together with the time lag between mobilization and excretion. If the digestive

system is not operating well, it may not be able to excrete toxins in the stool

very well. If there is low stomach acid, intestinal bacterial dysbiosis,

malabsorption, and/or leaky gut syndrome, these may need to be diagnosed with

comprehensive stool testing and treated before the methylation protocol can be

used. If there is at least one bowel movement per day, the use of various

binders may help. These include activated charcoal or modified citrus pectin,

which will help to usher toxins from the gut into the stools. Lemon juice

(taking care to use a drinking straw and to flush the teeth with water

afterward) can help to increase the excretion of some toxins into the urine.

Another negative reaction can be caused by development of potassium deficiency.

This occurs because as the folates rise in the cells, the cells are able to

divide and reproduce more rapidly. Since potassium is the most abundant

positive ion inside all cells, this produces a demand for potassium, which is

generally low in PWMEs to start with. Symptoms associated with low potassium

include heart palpitations and muscle spasms. The blood serum potassium level

can be measured with a standard comprehensive blood metabolic panel.

Supplementing with potassium supplements or foods high in potassium may help

with this.

Now, what about the etiologies and additional features that accumulate during

the illness?

There is a wide variety of possibilities. First, there is ongoing psychological

or emotional stress. This may be difficult to avoid because of life

circumstances, but it is important to lower this to achieve full recovery,

because this will continue to place demands on the HPA axis to secrete cortisol

and on the sympathetic nervous system to secrete norepinephrine and epinephrine,

which will produce oxidative stress and hence, continuing demands on

glutathione.

Ongoing exposure to toxins and especially biotoxins (for those who are

susceptible), must be eliminated, and as mentioned above, it may be necessary to

do chelation or FIR sauna treatments to lower the levels of toxins.

There is a variety of pathogens that can serve as etiologies or that can

accumulate during the illness. Some of them have ways of hiding from the immune

system and thus will need to be dealt with specifically and directly. These may

include Lyme disease and its coinfections, intestinal bacterial dysbiosis (as

mentioned above) and yeast infection, a variety of viral infections, including

enteroviral infections (and possibly retroviral infections), intracellular

bacterial infections including mycoplasma, chlamydia and rickettsia, infections

involving root canals and cavitations where teeth have been removed, sinus

infections, including fungal as well as MARCONS (multiple antibiotic resistant

coagulase negative Staphyloccus). Dealing with these infections is perhaps the

most difficult aspect of treating ME/CFS. Some PWMEs have histories of many

infections during the early part of their lives, before the onset of ME/CFS,

suggesting possible genetic

deficiencies in their immune systems. Testing for some of them (such as Lyme

disease and retroviruses) is not very clearcut at present. Treatments for some

of them are not always very effective. This is an area that needs a lot more

work.

This is the status as I see it today. I would appreciate hearing your thoughts.

Best regards,

Rich

> > > > > >

> > > > > > I posted this on another group but this particular problem

> > does

> > > > not seem to affect most of them

> > > > > >

> > > > > > When I fatigue from overwork /can't get enough rest /am in

> > > > adverse conditions ,(too hot, to cold,high elevations) etc.I get a

> > > > ravenous appetite for usually high saturated fat foods like bacon,

> > > > chips, fatty meats.

> > > > > >

> > > > > > Researching this I have concluded tenatively this is what

> > > > happens. The body gets fatigued and can't expell toxins well , so

> > > > the body has to do something with the poisons and it increases

> > > > appetitie to increase fat to have a place to sequester the stuff

> > > > > >

> > > > > > So far anything that helps the body expell bad stuff like

> > coffee

> > > > retension enemas, moppers saunas etc helps but these solutions

> > only

> > > > help so much.

> > > > > >

> > > > > > I will say the more the abx beats infection down and whatever

> > > > else there is the less of a problem this is ,but it's still a

> > > > problem . Having to much body weight is not healthy and doesn't

> > look

> > > > good either

> > > > > >

> > > > > > So I have some questions

> > > > > >

> > > > > > Do any of you have this problem of ravenous appetite in

> > response

> > > > to stressors and if so what do you do about it ?

> > > > > >

> > > > > > Could thiese symptoms be from some other kind of infection/

> > > > problem?

> > > > > >

> > > > > > This is a real problem for me because extra body weight is not

> > > > healthy and doesn't look good either

> > > > > >

> > > > >

> > > > >

> > > >

> > > >