Re: Digest Number 2130

[Guest guest]

Judith, I have some of the same symptoms you mentioned. My doctor from years

ago (following pesticide exposures) put me on 5 mg. of deltasone (form of

prednisone) and thyroid. The US of A thyroid tests showed low normal, but she

used the Broda protocol and sent my urine to Belgium for thyroid

tests. The results came back saying to salt load and take thyroid. That was

in the late eighties. Had I been able to avoid further chemical exposures and

stay on that protocol, I think I'd be well today. Free radical production

affects my heart very easily inasmuch as we are always trying to catch up on

antioxidants and never ahead of the game.

Although few of us are aware of it, we are probably in a set of people who

could be evaluated at the UWash for low Pon1, which does indicate some risk

of heart disease along with pesticide sensitivity.

That may or may not help you. It certainly does not answer your questions,

but the symptoms sound similar to mine and that is how I deal with my illness

now, primarily through treating the free radical production by trying to

boost glutathione.

I have gotten some info from the Adult-metals-chelation group that has been

invaluable, particularly regarding mercury and other metals that add to the

low glutathione and high free radical problem.

I think grocery stores and telephone conversations both involve chemical

exposures. You might be very phenol sensitive. In that case short phone calls

and short shopping mall or grocery store visits would help.

One research doctor told me that benzodiazapene occupies receptors in the

brain that pesticides and other chemicals use, so using them before the phone

call or grocery store visit might help.

Also both have sitting or standing still in common and you might be setting

off your NMH.

You are describing neurally mediated hypotension symptoms exactly as

mentioned at Hopkins (not that they helped me). You might be dehydrated

(happens easily with us) and you could salt and water load prior to

activities. If you are easily dehydrated (and CFS patients are always

dehydrated according to Cheney) the rapid heart problem could be poor left

ventricle filling. Cheney recommends " gookinaid " but you probably know about

that already.

Exercising the upper body regularly helps condition the heart. I did that

lying down and with soup cans or weights at my worst.

Following a long, graduated exercise program on the Appalachian Trail in

clean air, I had much less rapid heart beating. When I returned to Texas my

pulse and heartrate both went up again. These can also be due to chemical

exposures, so vigilance regarding when and where these symptoms begin is

important. For me, the symptoms occur in polluted air such as one finds in

malls and grocery stores. The rapid heart beat is the brain's way of dealing

with syncope. The heart beats rapidly in order to stop you from fainting.

What you are describing sounds to me like " dysautonomia " in which brain

dysfunction is actually the key problem and cannot regulate the heartbeat and

other organs such as the adrenal glands. In that case thinking about

something " pleasant " can set off an adrenalin rush. When I am that sick I

coccoon myself because that is all I can do. I try to lie down much of the

time when I am having symptoms that bad, and get up and down slowly.

I had the cortisol tests and mine were within normal limits. My doctor put me

on deltasone anyway because it does boost adrenals at what she called the

subclinical dose and it helps one to hold onto fluids. Alternative care

doctors do this regularly. I could be very off target, but with a little more

weight on and more salt and fluid intake, I get fewer heart symptoms. Once I

took an arthritis drug that did all of the things I needed. Another patient

was on the same arthritis drug and had similar improvements; however, the

drug did begin to cause problems and was discontinued.

Unfortunately, I have been on several protocols that might have allowed for

my improvements, so it is difficult to say which of these helped the most.

Now my biggest problem is MCS, and symptoms arising from free radical

production following chemical exposures. I know this does not address your

questions directly, but hope it helps anyway. Jannarone

[Guest guest]

In a message dated 12/29/01 3:03:41 AM Central Standard Time,

writes:

> that in

> schizophrenics one of their problems was not being able to modulate

>

I wanted to add that as a result of looking at the adult-metal-chelation list

for a while I have become aware that the autism site ( autism as an outcome

of possible mercury or other heavy metal exposures) lists many of our

symptoms, as well. Also, all MCS patients I have seen talk about having

sensory input problems with sound, light, talking, and other forms of sensory

stimulation causing problems for them that fall into a category called

" disautonomia " . I consider the autism investigations worthy of attention, so

I am doing that. >

/files/ANDY_INDEX is a good place

to read about experiences with chelation and symptoms, many similar to CFS.

Andy Cutler is an author who addresses the amalgam issue and other ways of

becoming mercury toxic. He theorizes that mercury toxicity can lead to

glutathione depletion and consequent intolerance of other xenobiotics, which

would include pesticides and other toxins collectively causing free radical

production and cellular dysfunction. Other metals are discussed as well.

Viewed in the context that I see it, chelation is a form of anti-oxidant

treatment, and this is literally true when one is using Alpha Lipoic Acid.

Andy has a book, but the person who indexes internet posts by Andy Cutler

hits the high points. There are several ways of getting DMSA without a

prescription, although doctors do write script for it. Lurking on the metal

list is a good idea because there are so many opinions about how to work out

treatment plans for heavy metal toxicity.

I think if we had a forthright medical system we would find schizophrenia and

heavy metal toxicity investigations, but then cows don't fly either.

My mercury levels were off the charts in 1998 even following Hal Huggins

amalgam removal, and oral chelation about 10 years ago, so I am doing a new

mercury protocol that includes DMPS, Alpha Lipoic Acid and DMSA. Mercury

resides in the brain, a fact I would have just as well not known. For some of

us, this might be one of our problems, inasmuch as our vaccines contained

mercury, we played with it, it is in the environment, in pesticides and even

in mecurochrome.

As many remember I continue to believe that a viral problem exists in cohort

with toxic issues. If the ppar gene is controlled by a viral fragment from

whatever source, cytochrome p450 will not operate and all toxins will cause

us problems. So I am introducing this idea of heavy metals, in much the same

way that I talk about pesticides. Hope this leads some of us to some better

treatment inasmuch as we have no choice but to research our own cases. I have

counted in excess of 20 fillings because some dentist I went to years ago,

redid ten just to get the $$$.

I know many CFS patients are looking into this issue but I wanted to make

sure that everyone has the info they need to get into this topic further.

Jannarone

>