Re: My Introduction - long

[Guest guest]

Hi Bob

This is what I have been doing:

1) Low carb diet - then reintroduce carbs when glutathione has been raised

2) Raising glutathione & thyroid

3) Killing infections

4) Improving adrenals

5) Improving digestion

6) Correct fatty acid balance

7) Balancing phase 1

8) Antioxidants

9) Dealing with toxins

10)Immune regulation

Regards

CS

[Guest guest]

Make sure you get a really good and comprehensive workup of your adrenal

glands, too.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

Are thises in strict order or are somethings happening in parallel?

How are you raising glutathione? How are you testing for and killing

infections? Mycoplasms, hhv6, ebv, what?

On 7/9/06, bhammanuk@... <bhammanuk@...> wrote:

>

> Hi Bob

>

> This is what I have been doing:

>

> 1) Low carb diet - then reintroduce carbs when glutathione has been raised

> 2) Raising glutathione & thyroid

> 3) Killing infections

>

>

[Guest guest]

Bob. Do your symptoms get worse when a storm is coming?

-

(I think you're right about the microwave repeaters no longer in use.

I vaguely remember hearing about this when the switchover was done)

[Guest guest]

,

I don't know. But I do remember feeling particularly good one day adfter

the weather had changed from hot to cool. Higher barometric pressure,

maybe? Who knows?

On 7/9/06, erikmoldwarrior <erikmoldwarrior@...> wrote:

>

>

> Bob. Do your symptoms get worse when a storm is coming?

>

> -

>

>

[Guest guest]

Bob,

What kinds of anti-oxidents are you taking besides the glutathione

boosters?

paul

>

>

> Hi Bob

>

> This is what I have been doing:

>

> 1) Low carb diet - then reintroduce carbs when glutathione has

been raised

> 2) Raising glutathione & thyroid

> 3) Killing infections

> 4) Improving adrenals

> 5) Improving digestion

> 6) Correct fatty acid balance

> 7) Balancing phase 1

> 8) Antioxidants

> 9) Dealing with toxins

> 10)Immune regulation

>

>

> Regards

> CS

>

>

>

>

[Guest guest]

Bob,

I think I had a lot of these symptoms for years before I actually got

really sick - and at the time was just attributing them to getting

older. But it sounds like you are smart to recognize them and start

taking some action. Are you taking any of the following antioxidents?

Melatonin

Zinc

SOD

Gingko Bilboa

Bilberry Extract

Caffeic Acid

Acetyl Carnitine

R-Lipoic Acid

Lycopene

Also, have you as yet experienced any of the following symptoms?

Swollen and painful lymph nodes?

Weight loss?

Loss of appetite?

Loss of sex drive?

Allergies?

Insomnia?

Weight loss?

Night sweats?

Extreme and excessive thirst?

Anxiety attacks?

Sore throat?

Change in eating habits (e.g. a desire for more protein, fruits and

vegs, as opposed to carbos)

Nausea?

Heart pain?

Testicular pain?

You might be interested in trying Chinese medicine/acupuncture -

especially Ryodoraku - to bring your body back into balance. Also, it

might be a good idea to try to limit EMF exposure as much as

possible.

peace,

paul

peace,

paul

> >

> > Hi Bob

> >

> > This is what I have been doing:

> >

> > 1) Low carb diet - then reintroduce carbs when glutathione has

been raised

> > 2) Raising glutathione & thyroid

> > 3) Killing infections

> >

> >

>

>

>

[Guest guest]

On Jul 9, 2006, at 2:47 PM, bob niederman wrote:

> My name is Bob Niederman.

Welcome, Bob!

> I am a computer datacommunications engineer. I

> am still working, but effectively part-time, as I've ended up

> taking about

> 1.5 sick days or vacation days every week this year due to severe

> fatigue.

> And that's with using large amounts of caffeine and some ephedrine

> all day,

> every day.

That caffeine and (especially) ephedrine habit is a real double-edged

sword. Sure, it gets you to work -- but it probably also isn't

helping your sleep or recovery much. Ephedrine can also wreck your

adrenals, which are probably already teetering on the edge anyway.

(If a good adrenal workup isn't on your list, you might discuss it

with your doc. Also thyroid -- though the kinds of thyroid issues we

have in CFS tend not to show up on the standard panels.)

How's your employer holding up with this? That's a lot of downtime,

no matter how much they like you....

> I am not sure I have ME - I think I qualify for CFS with a bit of

> stretch.

CFS is a much looser diagnosis than ME -- and, as far as most of us

are concerned, a damned near useless one. The Canadian Case

Definition (which is readily found online, if you haven't read it) is

far more detailed.

What is it about the CDC definition of CFS that seems like " a

stretch " to you?

> I have had bad fatigue for 1.5 years, much worse the last 6 months.

Was it sudden onset, or did it creep up on you slowly? (It sounds

like it's still creeping.)

> When intellectually involved, I'm still pretty good. Can program

> computers,

> fix routers, stuff like that. But anything tedious or too long -

> forget

> it. So brainfog is minimal - when I'm awake. But having problems

> memorizing new phone numbers, though the old ones are all still

> there - they

> used to call me the walking phonebook. Frequently must nap and/or

> take off

> work.

Oh, man. I've been here. Went from a full-time 50-hour-a-week middle

management job in Silicon Valley to full-time freelancing to part-

time freelancing to the point where I couldn't hit a deadline if it

was a month away. I finally had to give it all up entirely, and just

go to bed.

And, right up until that point, I didn't have either a diagnosis nor

a doctor who even noticed I was struggling. My own denial was a solid

wall; but, on the other hand, this was a decade ago and all anybody

really knew for sure about CFS could fit on half a page. The rest of

it was just guessing.

> Have started recognizing push-crash - and aerobic is defitely worse

> than

> anaerobic, can be down 2 days after 25 minute on the exercycle.

That's huge -- and wise. Once you accept your limits and start to get

a feel for the actual size of your energy envelope, you can start to

become very skilled at working within it. It does force you to

rearrange your life and order your priorities -- but it also helps

you get to be very honest about what's important, what can be

accomplished with help, and what you can let go of.

I got tremendous permission to streamline and simplify once I began

to understand and make friends with those boundaries. Ironically, the

more I respected and stuck to them, the faster I started to heal, and

the larger my operational envelope became. Careful energy management

was a huge contribution to my recovery.

> I think I am early in the disease, in denial, or I have something

> else.

If you're here, it's a good sign that you're moving through the

denial phase. Which, since this can be a classic grieving process,

means that anger and bargaining are probably just ahead. The anger

can suck, though it's fuel for healing. The bargaining is useful when

you're figuring out just where the edges of that envelope lie, and

how you're going to rearrange your life to maximize the yums and

handle the yuks with aplomb.

> So here I am. Any input welcome. I know I'm lucky, so far, to be

> working

> and insured and all that, but the way everything is going, I don't

> know how

> much longer I can work and everything else is based on that.

Are you doing the practical work of getting prepared for a life

without job or insurance? This might, for example, be a good time to

start working with your doctor to get the diagnostic work done and

laying the paper trail you may need a year or three down the road if

the time comes to apply for SSI and disability. You might even

contact a good disability attorney now, and find out what will be

needed, so you'll have your ducks in a row (and already paid for by

the insurance company) at application time.

Also, now is the time to get a solid financial plan working to ensure

you have some savings and investment income; and to begin to divest

yourself of stuff that won't be part of your downshifted life, and/or

you don't want to spend your limited energy looking after. Get your

car and credit cards paid off, so if you lose your job you'll still

have those as ready resources. And do what you can (I know, that's

pretty limited) to build solid social networks, so when you need to

reach out to friends and family, they'll be there.

You might also look around and see what you might be able to do from

home, on a limited basis, to keep some money coming in. Again, if you

begin to plan/train/acquire tools/etc. now, you'll at least have Plan

B in place when and if you need it. And finally: if you're living

somewhere that's expensive, give some thought to where you might move

if you need to go to a cheaper area at some point down the road.

This is really crappy stuff to have to think about, but if you do

have ME/CFS, you could be in this for a very long haul. The good news

is that about 75% of us do get significantly better over the course

of 5-10 years. The bad news is that about 5% of us are ever

completely restored to health. Consider this an invitation to begin

re-writing your future plans.

> Dr. is looking at sleep apnea (sleep study scheduled), with a

> stress ekg

> requested if that apnea doesn't pan out. Since the 'stress' in a

> stress is

> getting on a treadmill and working out, I think I'll be putting

> that off,

> maybe infavor of an impedance EKG or some really CFS-oriented

> testing. (If

> I understand it right, every push-crash has the ability to do

> premanent

> damage.)

The apnea thing is, in my experience, tremendously important and

usually overlooked -- especially if you have FM or brain fog (which

don't sound like big issues for you at the moment). Be sure to ask

them to check for central apnea, not just OSA; central apnea is far

more common in CFS patients, but far less common in the general

population.

Getting my OSA treated was one of the six or seven best things I've

done for my CFS.

> Current meds: risperdal at night (sometimes valium) for anxiety,

> Lexapro in

> the day for anxiety depression ( started having those problems 10

> years ago

> or more, started this particular meds in mid 2004).

Have you been checked out by an endocrinologist conversant in CFS? (I

know a good one in LA, if you need a referral.) The disease plays hob

with the reproductive hormones in both men and women. If it's messing

with your testosterone levels, in particular, this could lead to

serotonin and other issues that will mess up your sleep and your

moods. Anxiety is particularly common. A good endo might be able to

sort this out, and perhaps get you off some of that stuff.

>

> Supplements: anit-oxidants, gutathione precusors - a bowl of

> pills. They

> seem to help a little. Started on immunopro and immunocall this

> weekend.

Yeah, we all seem to have our little morning bowls of pills -- and

another bowl for noon, and yet another for night. If the ImmunoPro

seems to help a little, you might try advancing to liposomal GSH,

which gives quite a bit more glutathione kick in my experience.

Welcome again to the group. I've had this creeping crud for over 20

years now, and have been actively fighting it for nearly 10. But this

list has put me on to more good stuff in the past nine months than

I'd found in the nine years previous (and believe me, I was looking!)

Sara

[Guest guest]

>

> Bob,

>

> I think I had a lot of these symptoms for years before I actually got

> really sick - and at the time was just attributing them to getting

> older.

I did too - old fat, and lazy, because in the past I could always whip

myself into shape. The push-crash is what got my attention.

> Are you taking any of the following antioxidents?

>

> Melatonin

At night to sleep

> Zinc

Yes

> SOD

No - what's good, thought you had to do precursors

> Gingko Bilboa

No

> Bilberry Extract

No

> Caffeic Acid

no

> Acetyl Carnitine

ACetyl-L-Carinitine 2 - 3 gm / day

> R-Lipoic Acid

Alpha Lipoic Acid 1200 - 1800 mg / day

> Lycopene

No

>

> Also, have you as yet experienced any of the following symptoms?

>

> Swollen and painful lymph nodes?

No

> Weight loss?

I f***ing wish

> Loss of appetite?

No

> Loss of sex drive?

Some, but it mainly happened in concert with increasing the lexapro dose

> Allergies?

Some non-specific - always had sneezzing fits

> Insomnia?

Get to sleep, can't stay that way

> Night sweats?

No

> Extreme and excessive thirst?

Was drinking a ton of water and pissing constantly. This - along most

lioightheadedness incidents - resoved form using homebrew gookinaid:

http://www.dfwcfids.org/healing/gokhmbrw.htm

> Anxiety attacks?

No except when I read about how bad this gets for some - on meds for

prior anxiety issues

> Sore throat?

Had one from December through march or april - gone now.

> Change in eating habits (e.g. a desire for more protein, fruits and

> vegs, as opposed to carbos)

no.

> Nausea?

no

> Heart pain?

some idscomfort in that area, hard to say it was heart/

> Testicular pain?

No.

>

> You might be interested in trying Chinese medicine/acupuncture -

> especially Ryodoraku - to bring your body back into balance. Also, it

> might be a good idea to try to limit EMF exposure as much as

> possible.

Well, not keeping the cell phone in my shirt pocket any more.

[Guest guest]

> Well, not keeping the cell phone in my shirt pocket any more.

Good idea! I used to keep mine in my front suit pocket or in my front

pants pocket on the right side. I had both heart pain and testicular

pain on the right side where I would keep the cell phone.

As you can guess, I no longer own a cell phone.

paul

>

[Guest guest]

On 7/9/06, Mercuria <mercuria@...> wrote:

>

>

> That caffeine and (especially) ephedrine habit is a real double-edged

> sword. Sure, it gets you to work -- but it probably also isn't

> helping your sleep or recovery much.

Well, not only that, I think it is just one more way to " push " - I've

decided to wean myself off the stuff, come hell or high water.

> Ephedrine can also wreck your

> adrenals, which are probably already teetering on the edge anyway.

> (If a good adrenal workup isn't on your list, you might discuss it

> with your doc. Also thyroid -- though the kinds of thyroid issues we

> have in CFS tend not to show up on the standard panels.)

Doc says the adrenals came out ok. Of course he says the thyroid is OK

too, but the tests don't catch downregulated receptors, do they?

> How's your employer holding up with this? That's a lot of downtime,

> no matter how much they like you....

>

He;'s pretty good. (Actually, this guy is *great* - it's the next guy

, whoever he is, that would be a question mark .) He has said that

" Even suboptimal, you're still doing good. " But he did tell me to put

in FMLA paperwork. So far I'm drawing on time I'm entitled to - and

so far the stuff that *has* to get done, has gotten done.

> CFS is a much looser diagnosis than ME -- and, as far as most of us

> are concerned, a damned near useless one.

Yep.

> The Canadian Case

> Definition (which is readily found online, if you haven't read it) is

> far more detailed.

It's better than CDC/Fukuda - but that is setting the bar very low

indeed. Totally missing is the idea that they are still probably

capturing multiple conditions - one of which is ME.

> What is it about the CDC definition of CFS that seems like " a

> stretch " to you?

No swollen glands, little pain (just mild, though frequent headaches

and the first burning muscles aches after a minor push-crash this week

(thought 1/2 mile walk wouldn't be a problem - wrong.) Cognitive

issue are still minor, when I'm able to stay awake.

> Was it sudden onset, or did it creep up on you slowly? (It sounds

> like it's still creeping.)

Mostly creeping, with a definite increment sometime earlier this year.

> My own denial was a solid

> wall; but, on the other hand, this was a decade ago and all anybody

> really knew for sure about CFS could fit on half a page. The rest of

> it was just guessing.

I had read up on CFS - because the name (which everyone hates)

perfectly described my biggest problem - but I was denying too, until

I had a push-crash 2 weeks ago - that woke me up in a hurry. While I

still thought I could exercise, I was not beleiving this.

> That's huge -- and wise. Once you accept your limits and start to get

> a feel for the actual size of your energy envelope, you can start to

> become very skilled at working within it.

> Are you doing the practical work of getting prepared for a life

> without job or insurance? T

Not yet, will start making a paper trail.

>

> Also, now is the time to get a solid financial plan working to ensure

Yes well, since last november i cleverly bought a house at the top of

the boom, in the burrbs with a basement, I'm set. more house than

I'll be abvle to affford or take care of. Aren;t i the f'in genius?

credit cards are high too, tjhough I can fix that inside of 8 months I

think. If I lose my job, I've got some savings, but I got to

downscale in a hurry.

>

> The apnea thing is, in my experience, tremendously important and

> usually overlooked Be sure to ask

> them to check for central apnea, not just OSA; central apnea is far

> more common in CFS patients, but far less common in the general

> population.

No FM, when I'm awake and half rested, my brain is still OK. Will

look into 'central apnea' - whatever that is.

> Getting my OSA treated was one of the six or seven best things I've

> done for my CFS.

>

> Have you been checked out by an endocrinologist conversant in CFS? (I

> know a good one in LA, if you need a referral.)

Nope, working with my GP right now - thought I'd do some of the

elimination work - but more reading over the weekend has convionced me

there are real tests out their I can get started to confirm this. Got

names of some local CFS-savvy docs - may start seeing them next week.

Time to go dual-path I think - GP for the paper trail at least and to

have an extra set of eyes, plus someone who knows this disease.

> If the ImmunoPro

> seems to help a little, you might try advancing to liposomal GSH,

> which gives quite a bit more glutathione kick in my experience.

Somewhere I think I read where (Cheney?) had better luck with the

immunocal that the liposomal GSH, but I've already bought some, so why

not? Especially since you've had the opposite experience .

- Bob

[Guest guest]

Bob wrote:

Yes well, since last november i cleverly bought a house at the top of

the boom, in the burrbs with a basement, I'm set. more house than

I'll be abvle to affford or take care of. Aren;t i the f'in genius?

Bob; take a second look at the house issue. I don' t know what your social

staus is, but when a disease is debilitating it can also extremely isolating.

Although I am a person who needs and likes a lot of solitude, I would give a

lot to be living with other humans- if the house was big enough to have enough

space. And not necessarily for the companionship primarily, but for help. I have

recently been granted, on a new (for me) government program, enough hrs of home

caregiving to get my life really in better order, but I have suffered enormously

from not having care. I mean my health has suffered.

There are others on this forum who have had the same experience.

It might be possible to trade a combination of services and cash for shelter.

If your house would work with a roomate. That would help you meet the expense of

the house and have some help.

Just my 2 cents.

Adrienne