To Sara, was : Re: FFC centers/Schaller, MD/HORMONES/NUTRITION

[Guest guest]

Hi, Sara.

I'm a little more optimistic about your case than it sounds as

though you are. Did you ever see the message I posted about your

case on March 6? Do you have any feedback on it? (See below.)

Rich

> After 20 years, I haven't permanently repaired or recovered a

single

> piece of my broken body. My thyroid is shot. My adrenals are shot.

My

> methlyation system is apparently broken in a way that can't be

fixed;

> and my endocrine and immune systems will eat me alive if I let

them.

> All I can do is give the system what it needs each day to keep

> functioning in spite of the losses already incurred, and avoid

> generating further damage. At this point, primary causes -- or

> primary cures -- aren't even a hope. The focus for me is simply

in

> staying functional enough to enjoy as much of my life as I can.

> Sara

>

Thanks for sending me your health history. Having studied it, as

well as all the information you've posted to the list, I'm ready to

offer some thoughts about what is currently going on in your case

and what future directions might be productive.

First, I want to discuss what you've referred to as my protocol,

which you have been following for the past few weeks. (In actual

fact, it isn't a rigid protocol, and to be honest, it really isn't

mine, either. It was an attempt to adapt the DAN! autism treatments

to your case.) What I was trying to accomplish with that, as I

think you sugggested in one of your posts, was to open up the

pathways of your sulfur metabolism, including your methylation

cycle, and then to fill them with substrates. This is sort of

analogous to repairing a road system and then driving some trucks

down the roads to see if normal traffic flow can be established.

Before establishing the new traffic flow, it was necessary to make

sure there was enough taurine to tide you over until proper flow was

set up. The P5P and magnesium were intended primarily to help flow

in the transsulfuration pathway. The methyl B12 (which you were

already getting), the folinic acid and the TMG were intended to help

close the methylation cycle. I didn't suggest any support for your

sulfate or your sulfoxidation, because it appeared that you already

had them covered and that they were doing O.K.

So, what happened? Well, the dose I originally suggested for the

taurine was probably a little generous, and the excess got processed

by bugs in your gut and produced a lot of bad-smelling gas, but I

think that meant that your taurine supplies were adequate. Then you

noticed what you called a " hit " when you started the magnesium and

P5P, or at least the magnesium. I think that means you needed at

least the magnesium, and maybe both of them. Then you added the TMG

and didn't notice much, except that later on it seemed to be easing

the effect of the SAMe. So far, not counting the SAMe, this was

road repair.

Now you added the SAMe, which was a fleet of trucks. On the first

day, it seemed as though the first truck was rolling along well.

You felt energized and brilliant. However, then things turned sour

and you had to back off, dropping the SAMe, and you also dropped the

TMG. So what happened there? I think what happened was that the

methylation cycle was still not operable at full capacity. It could

handle a little of the SAMe, and that was beneficial, but there soon

developed a traffic jam, and the excess traffic started driving off

the road and causing wrecks elsewhere.

Why did this happen? I can think of a couple of possibilities. One

is that there is some heavy metal toxicity that is blocking one or

more of the enzymes in the methylation cycle. You certainly have a

history of exposure to heavy metals, you have three amalgams and I'm

inferring that you have been low in glutathione for an extended

period of time, which would allow heavy metals, such as mercury, to

build up. The reasons I believe that you have been low in

glutathione are that you observe immediate benefit from your

intramuscular glutathione injections (admittedly together with B12

and AMP), and you also observe benefit from your N-acetylcysteine,

cysteine being the rate-limiting amino acid for making glutathione.

One argument against this mercury possibility is that as I said, you

observe benefit from the NAC, and it doesn't cause you neurological

problems. According to the work of Aposhian et al. in rats as well

as the paper by Quig, NAC can move mercury into the brain. If

you had much mercury hanging around, I suspect that the NAC wouldn't

be so helpful. But I think it's still possible that there might be

some heavy metal body burdens.

The other possibility is that your glutathione levels are still not

up to normal. If they were, I don't think you would observe so much

benefit from the injections and the NAC. Also, the fact that you

are still hypothyroid suggests that the thyroid gland, at least,

does not yet have enough glutathione. Furthermore, you still are

not able to tolerate aerobic exercise, and you still suffer from

postexertional malaise if you exceed your limits. I suspect that

this is due to glutathione depletion in the skeletal muscle and the

heart muscle. I think that the muscles, probably including the

heart muscle, are the last to get their glutathione levels restored

when you bring them back up. If the glutathione levels are not up

to normal, that would mean that your cells are suffering from at

least partial oxidative stress. In the muscles, I think that would

produce the effects you are experiencing when you exercise. Also,

it is known that some of the enzymes of the methylation cycle are

redox-sensitive, and they will thus be partially inhibited if there

is a state of oxidative stress. That would cut down the flow of

traffic on your methylation loop. So I think that could explain the

problems that arose when you took SAMe.

O.K., so why hasn't the glutathione come up to normal levels, given

that you have been getting those hefty shots in the bottom for quite

a while, and have also been taking quite a bit of NAC for a long

time? My suspicion is that your immune system is placing a large

demand on your glutathione supplies. Several years ago Bounous and

Molson published the hypothesis that in CFS, the muscles and the

cells of the immune system are in competition for the raw materials

to make glutathione, and I think they were right (and have told them

so a couple of times). I think they were right about this at the

onset of CFS, which is what they were discussing. But I think it

also occurs when one is trying to rebuild glutathione on the way out

of CFS, since there are infections that the immune system is having

to fight. I think infections are invariably present, because the

immune system has been dysfunctional during the illness, and the

infections have had a chance to proliferate during that time, which

can extend for many years, as in your case.

So what infection is your immune system fighting? Well, it has some

yeasts to worry about here and there, and there may be some viral

and intracellular bacterial infections as well, but I think the

biggie is the one you see when you look in the mirror. I think

you've already come to this realization, but based on what you've

reported about having major swollen lymph nodes on the left side of

your face and neck (to the extent that sometimes you don't have a

jawline on that side), which have been there ever since you had your

wisdom teeth removed over twenty years ago, I'm guessing that you do

in fact have a focal infection in your left jaw, and that this is

occupying your immune system big-time, and is draining your supplies

of glutathione as fast as you can currently replace them. That's

holding down the operation of your methylation cycle, and that's why

you were not able to tolerate SAMe. I think that the observations

you reported from putting hydrogen peroxide in your left ear support

the suggestion that there is an infection in that ballpark. When

only some lymph nodes in the body are swollen, it suggests that

there is a local infection in the region from which the lymph drains

into those particular nodes.

So what do I suggest? Well I do think you could bring the TMG back

up, because that will open an alternate pathway to close the

methylation cycle, and that may help some. I would suggest that you

not put much SAMe into the picture again until the infection is

dealt with, though.

For the infection, I think you are going to need a good oral surgeon

who can clean out your jaw. I don't know who to recommend, but you

have demonstrated skill in tracking down good doctors in the past,

so I expect that you know how to do that. Of course, you will need

anesthesia during this surgery, and it will be very important to

avoid any anesthetic agents that are detoxed by the body using

either catechol-O-methyltransferase (COMT) or uridine 5'-

diphosphoglucuronosyltransferase 2B7 (UGT2B7), in view of your

sensitivities, as I've discussed in previous posts.

I am hopeful that once your immune system is able to calm back down,

your glutathione will be able to come back up, and then you will be

able to start ramping up the SAMe, starting at a low dose at first

to make sure the pathway is clear. If it is well tolerated, I don't

think you will have to continue it, but it is a good test of the

sulfur metabolism.

Once SAMe is tolerated well, then you could try some methionine, or

you could just skip that and try some whey protein, which has

methionine in it. If you can tolerate that well, then I would say

that your sulfur metabolism is back in shape.

You asked about things you could drop. I think you could drop

taurine after your methylation cycle is running well. I don't know

whether you need folinic acid or not, in view of your experience.

You could try dropping it after your methylation cycle is back up,

and see how it goes. I also don't know if you need P5P. Again, you

could try dropping it and see how it goes. Without gene testing,

it's hard to be sure what you actually need, and I think the only

other way is to experiment and see how you feel. You seem to be a

good observer of your body's response to things, so that may work

well for you.

At that point, I'm hopeful that you will experience a lot of

benefit, and the above may be all you need to do. However, if you

are still not completely well at that point, it's possible that

there will be some other issues that will need to be dealt with.

Please note that I'm suggesting pursuing the following only if it

appears that all the problems have not yet been dealt with.

First, in view of your history, there may be some heavy metals

buildup. I favor running a chelator-provoked urine collection test,

of the type offered by Doctor's Data Laboratories at

http://www.doctorsdata.com, and I suggest the DMSA-provoked version,

together with comparison to an unprovoked urine sample. If there do

appear to be significant amounts of heavy metals coming out, I would

suggest following the chelation procedures recommended by the DAN!

project, which can be found at

http://www.autismresearchinstitute.com.

There could also be some other infections that won't resolve on

their own, such as viral infections or intracellular bacterial

infections. If the above doesn't do the whole job, I would suggest

some testing to see if they are present. Some of the labs offer a

chronic fatigue syndrome panel that looks for a variety of viruses

and intracellular bacteria that are commonly found in CFS, using

both antibody and PCR testing. One of them is http://www.mdlab.com

in New Jersey. In view of your history, you might also have Lyme

disease, and I would suggest the Western Blot test from

http://www.igenex.com to test for that.

You mentioned your family history of viral cardiomyopathy. I'm

hoping that your heart will be able to function at higher rates and

good cardiac output after your glutathione levels are restored. If

this doesn't seem to be the case, I do think you should look into

the possibility of viral cardiomyopathy. Dr. A. Lerner in

Michigan is the expert on this in CFS, and he does his diagnosis

using a Holter monitor (looking for alternating or flattened T

waves) and a detailed antibody study, looking for all the different

antibodies associated with various antigens of the Epstein-Barr

virus (EBV) and the cytomegalovirus (CMV). If you are able to get

impedance cardiography run to evaluate your cardiac output, both

supine and sitting with your feet down, as well as echocardiography

with a G.E. Vivid 7 machine, which is what Dr. Cheney is using on

his CFS patients, I think that would also help a great deal to see

how your heart is doing. Incidentally, cytomegalovirus can produce

an illness that looks very much like mononucleosis from Epstein-Barr

virus. You mentioned that the mono you had at age 19 tested

negatively for EBV. I'm wondering if they looked for CMV.

Another thing you might look into, if you still aren't completely

healthy at that point, is mold illness. You mentioned that you know

you have mold sensitivity. It may be possible that there is mold in

your current living environment. The visual contrast sensitivity

test offered for less that $10 (U.S.) on Dr. Ritchie Shoemaker's

site (http://www.chronicneurotoxins.com) would be a good place to

start.

I guess those are all my thoughts for now. I hope this is helpful.

Rich