Re: Great info and questions I had sent via email-decided to post too.

[Guest guest]

--- J---- <javanfirkins@...> wrote:

> The aspect I wasn't aware of was with the diet--even

> if you happen to

> eat a tiny bit here or there it can affect the body

> for what seems to

> be as little as 7 days. I believe that is what I

> read.

> So about every 3 weeks, I might have eaten a tiny

> bit of chocolate or

> something that had some small but significant enough

> amount of dairy.

> Just a little bit thinking it was benign, but

> guess I won't be doing

> that anymore!

**** Pretty hard to say for sure. Right now, it is

definitely best to avoid altogether. Once you're

under Dr G's care (or whoever he trains and does his

treatment), your system could cool down enough that an

occasional treat wouldn't necessarily be catostrophic,

but especially if you're one of those super-reactive

ones (sounds like you may be right now), foods DO

trigger the immune system and disrupt the gut - where

95% (I think) of the serotonin resides. It's hard to

say in my case how bad the foods are, and it does

really seem to matter how 'well' or sick I've been as

to how sensitive I am to foods. So for the next

couple of years you would be wise to be very strict

.... after that, there's hope. Now, the guideline

seems to be that products containing less than 2% milk

products (not the concentrated proteins) are

acceptable, and they're generally so processed as to

be ok. But once in a while that varies.

>

> *Several random questions I've been curious about

> for some time;

>

> -About the probiotics; did you have any thoughts on

> that one I showed

> you? It 'seems' like it could potentially be a

> really good one for

> people to try. Not really expensive either. About

> .40 cents a pill

> with only one taken a day. Example here;

>

>

http://www.enzy.com/portal/go/enzy/pearlsProducts.aspx?alias=enzy & tabalias=pearl\

sProducts

****** I honestly don't know about the pearls. I'd

really recommend asking the list directly w/that

specific subject to see if others have used it and

what their experience is. I don't want to advise on

what I know nothing about. The only negatives I

could speculate on would be a higher # of bacteria, or

if it's ok for them to not be released until further

in the intestines. It looks like the strains are

fine.

>

> I thought I read the reasoning behind not using a

> complex blend or

> species of probiotics; something about over

> activating the immune

> system and making it react to everything?

***** Some strains literally stimulate parts of the

immune system. Culturelle especially has documented

effects of stimulating a cytokine or chemokine - which

can be good for a lot of people - but that cytokine is

one of the up-regulators of the immune response, and

ours is already soooo upregulated if there is anxiety,

any ocd, etc. That is TH1 overactivation - and yours

and mine are likely in the group where TH1 and TH2 are

both overactivated rather than simply shifted to one

side or the other. So it's not an allergy in most

cases to probiotics. But to overstimulate the system

definitely increases sesntivitity overall. What

we need are down-regulators. I'd be curious if

acidophilus has some qualities like that. I'll bet

there are specific bacteria that, if researched, would

be found to have a down-regulating effect.

Maybe

> even less tolerant of

> things? Or maybe even putting MORE stress on the

> immune system; going

> in the totally wrong direction?? If so that makes

> me fairly excited

> IF the one I just started shouldn't do that. It

> means there should be

> more improvement than I was experiencing in the

> past.

******* You very well could! Something to look

forward to. But you have to realize, though, that

there is something greater underlying food

sensitivities. There are viral factors etc that, left

untreated, are going to continue doing their tweaking

to evade immune detection, and healing that thru diet,

etc, takes a lot longer than by antivirals. It could

happen, though, and has for some. CFIDS (and you

probably do have this based on what you said re

exercise and I'll get to that later) can't be cured

just by diet and probiotics for the majority of

people, or there would not be so much frustration in

research in targeting appropriate therapy. But some

do gain so much improvement as to feel recovered

simply by diet changes, which is awesome. So I'd be

optimistic and look for positives but don't be too

dissappointed or give up on it if you don't see them.

You're still doing underlying long-term good - as long

as you're not reacting to them that is.

************ I'm going to step away for a minute so

I'll send here and continue where I left off in

another email...

HTH so far'

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[Guest guest]

--- J---- <javanfirkins@...> wrote:

> -Aside from that (which I may just post in the

> general message board)

> question was whether you exercise?

**** I cannot exercise by aerobics at all. The longer

I attempt to follow that type of program (during my

well years), the worse I get. Exactly as you

describe, too. After strenuous blood-pumping

exercise, I have a decline in mood, but especially in

energy (decline) and get very foggy-brained. I tried

to find where I read a hypothesis re this, whether it

was by Klimas MD or Dr Cheney. There are

findings showing in CFIDS that exercise actually

increases the brain-stem hyperperfusion found in

CFIDS. I couldn't find that one right now, but you

might google " Brain Stem perfusion CFS " and find some

interesting articles.

Also, I believe in a long paper from Dr Cheney re his

hypothesis of cardiomyopathy in CFIDS (find on

co-cure.org) that he addresses this. Interesting read

- I recommend it.

Also, Dr Klimas discusses sed rates in one patient

conference that was written up - co-cure.org again I

think - and mentions some possibilities there re

possible pathology of some symptoms. Sed rates are

really low in a lot of CFIDS (same as ), and these

low sed rates indicate thick blood, and there are also

findings of red blood cell shape abnormalities, and

exercising in this state, the blood cannot flow as

well thru the veins. It may even be part of the

problem w/the brain hypoperfusion (and hyper-perfusion

as well in cases where inflammation in deeper areas

causes flow back up to other parts of the brain, like

the basal ganglia - which is why Tenex, a vasodilator,

can be so helpful w/hyperactivity and anxiety, etc).

I truly haven't

> known if it is a

> good idea to exercise; nothing strenuous of course.

> (Before I knew

> had anything like a Neuroimmune problem) I had

> noticed that when I

> worked out as I normally had in the past (VERY

> strenuous) I would feel

> much worse a day, two, three, four days afterwards.

> Depressed, tired

> and sick feeling. VERY fatigued, way beyond what

> would be a

> 'post-work out' soreness.

****** Same here. The more I tried, the worse I got.

We are told exercise has an antidepressant effect, but

in CFIDS, that effect is NOT present.

*** Make sure you read the paper at:

http://www.cfids-cab.org/MESA/ccpccd.pdf - I think

you'll read about that there... and even find

connections to other things you may not have thought

about. I've always wondered why I breath strangely

sometimes or hold my breath - and it mentions that as

an autonomic nervous system problem. Wierd. My 5yr

old does that too.

>

> -Since then I stopped exercising altogether. I've

> begun again however

> with the intensity of what I heard was recommended

> for someone who

> might have HIV, or the sort.

**** The researchers having the most success w/CFIDS

research are major HIV researchers - Dr

Galpin, Dr Klimas... They find the cognitive

dysfunction and SPECT scans to be strikingly similar

to end-stage AIDS. There's a lot of comparisons made

to it. (In fact, a treatment hoping to be targeted to

cognitive dysfunction in aids my be a hopeful for CFS

too)

Figured that might be

> the best known

> condition in which information might be slightly

> bridged/translated to

> ; with slightly similar protocols. (Hmm; just

> wondered to myself

> if people with HIV develop things similar to

> Neuroimmune dysfunction

> as well, ah-interesting question I think.)j

Dr Klimas recommends rebounders (trampolines) for your

'aerobic' exercise because it's also good for the

autonomic nervous system. Other than that, low level

easy pilates and yoga are the recommended exercise.

I've found that those work for me as well, and already

found that long before I read it.

***** Stopping here and will start another email to

continue...

bedtime for the babies

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[Guest guest]

--- J---- <javanfirkins@...> wrote:

> -And one more question. It seemed as though with my

> blood tests that

> I didn't really struggle with anything related to

> fungal problems; or

> is fungal treatment always a given with Dr. G? I

> was tested for

> Candida and they 'reported' it was negative, but I

> believe I read that

> might not be always be the case. The way my diet

> is, I generally

> don't eat things with yeast to begin with (being

> that I'm on a MAO

> Inhibitor, and yeast extract is on the NO-NO list).

> Considering I

> don't eat any grains but rice and MAYBE corn chips

> or corn cereal. I

> generally have never eaten a lot of sugar; which I

> know can be bad for

> Candida. I haven't drank pop or 'soda' in about

> eight years. I also

> don't add sugar to any cereal or tea. I've always

> eaten tuna fish

> straight out of the can with raw concentrated lime

> or lemon juice on

> top, which I also found to be good for Candida

> (being that it is acidic.)

> The only thing I need to watch concerning the no

> sugar added juice

> I've drank for years; being that it still has

> fructose.

******* There may be other things going on w/the

antifungals not directly related to yeast suppression.

I'm just now getting into this info. So yeah, I

think he'll still want to give them a shot.

He's said before that Nizoral has some immune

modulating properties. It also has some hormonal

effects as well. It might just have less to do with

yeast than some of it's other benefits - although

yeast of COURSE is a major factor. Also, if there is

natural killer cell dysfunction (very common), then

yeast is still a given and your careful diet is ONLY

helping.

There are some genetic findings being discussed, and

there seems to be a genetic effect by some of the

antifungals as well (i'm talking about epigenetics but

have very little understanding there) ... something

about switching genes or possibly stimulating

chemicals needed for genetic switching. It's

interesting but not something i can process at the

moment. If I rember, it may even effect glutathione

or something in the brain.

There are some digestive effects - important enzyme

pathways or gastric secretions affected by antifungals

too.

They may be more of a miracle drug than just for their

killing of fungus.

My sons both had a dramatic response to antifungals,

as did I, and those effects came in the first 3 days.

This is too soon for it to have been 'killing yeast

and therefore reducing the load on the immune system'.

And my PANDAS had the most improvement when my doctor

finally agreed to add antifungals (due to thrush and

esophageal candidosis), but when I started having

immediate big improvements, it was before the thrush

etc were gone. Dr G (I asked him on chat what the

heck antifungals have to do w/PANDAS if it's strep

related) said it's about the axis. Cryptic. But

yeast can block/inhibit interleukin-12 - an important

down-regulating cytokine. Who knows what else it can

do. Anyway, my boys and I definitely have the yeast

problems despite diet changes etc. You still could as

well. Even small colonies can trigger a vigorous

immune response.

>

> I'll bring the two books once I see Dr. G, he might

> even recommend it

> to other patients; are two excellent books I've been

> reading for well

> over 6 months now. I read them each night before

> bed. I read them

> all the time, practicing their techniques. They

> have helped more than

> everything combined really.

> Seeing that I've truly read enough psychology books

> over the past 11

> years to have a graduate school degree in it

> (truly); these are the

> two most helpful and without a doubt the most

> significant books I've

> found.

> Ironically I began reading both with my eyes

> proverbially rolled back

> into my head. One my brother forced me to read for

> lending me money;

> and the other because it is the only book the

> library carried

> concerning the subject.

>

> First was " Taming your Gremlin " by Rick Carson.

> (Author of which I've

> talked to on the phone one on one recently.)

>

> Second is " The Immune Power Personality. " by Henry

> Dreher.

> Proven step by step methods including detailed

> written medical

> articles by well known researchers on how to boost

> the immune system

> through psychological techniques as well as

> behavior, mind/body

> awareness, meditation, present moment awareness,

> writing methods,

> 'A.C.E.-factor' and many others. All having to do

> with what they were

> terming " Psychoneuroimmunology-or-PNI. " The book is

> very detailed,

> and it refers to the results of lab studies and

> experiments w/

> researcher's test results graphing the boosts and

> measurments of

> participant's Neutrophils, lymphocytes, monocyctes,

> granulocytes-killing activity, T-helper ratio to

> T-suppressor cells,

> and natural killer cells numbers. I know doing the

> exercises in the

> book have boosted my immune system alone. Over time

> of working with

> just the book (before practicing or knowing any

> recommendations

> or protocols) I was telling a considerable

> difference in my mood,

> energy, fatigue, mental abilities, anxiety, and

> concentration just

> from doing the exercises. (My best friends were

> telling me the

> difference they were noticing in me alone.)

****** The mental effects are not to be

underestimated. It's very important to utilize those

types of tools. Just keep in mind that infants and

very young children regressing into autism are too

young for these types of tools to benefit them, but Dr

Goldberg's treatments do. So progress you make

w/those tools is certainly nothing to turn your nose

up at, but does not address the core problems for most

people. You still have a lot to benefit from.

> Unfortunately I wasn't sure if I was going to be

> able to get my

> blood work up done or not; so I was practicing the

> methods in the book

> with great fever up to the point I had my blood

> drawn. I do have a

> hunch that once I did get my blood tests done, it

> might have created

> some measurable alterations....eee, perhaps showing

> a somewhat

> misrepresentation of what I had been experiencing

> the last several years.

> If you read the book yourself you'd understand what

> I mean by making

> that overt claim.

******* You didn't " hide " . It does show up in

your labs. Even severely bed-ridden ill CFS people

often do not show major findings in their labs. You

don't need to worry that perhaps you hid something and

that Dr Goldberg would not be able to recognize the

severity of illness. Also, the labs at the time of

draw are a snapshot at that moment and cannot reflect

long periods of time anyway.

The ability of the mind to affect the immune system

has been a long argument against CFIDS. Most doctors

still label this a mental illness requiring cognitive

behavioral therapy to resolve, and because they cannot

identify a specific marker, they label it psych. They

do not acknowledge yet that it is a two-way cross

talk, that immune responses and illness can affect

psych/behavior/thought. I mean, the sudden onset of

anxiety and acute OCD in PANDAS after a strep

infection had nothing to do with the way I was

thinking at the time. Life was good. It was like

being hit by a truck - and cognitive therapy would

have been about as helpful as a psychiatrist attending

a vehicular strike victim - not that he certainly

couldn't help that pt feel better while sick and

possibly improve and speed his recovery.

Natural killer cells are significantly affected by

stress ... for a day. They studied med students and

noticed a drop in NK activity prior to an important

test. BUT they resolve. Stressful events can be a

major precursor to CFIDS ... but infection is a

stress too. But there is a true dysfunction here,

and it is very likely that a virus is knocking out NK

function, or rather knocking out a protein required

for NKs to function properly. Did I ever email you a

copy of that article finding a new zoonotic virus

knocking out the STAT-1 protein? That's a good

example...

Regardless, I think the books are going to be

fascinating. I cannot express how much better I've

felt in the last couple of weeks - and without meds,

but even though I am thinking more positively, I have

to also acknowledge that I had a major mood shift (for

the better) and energy shift after having a really

nasty reaction to my DTH skin test, and looking into

it further, it may have brought about an immune shift

for the better. So I could think that my thoughts

have had a major impact, but I have to realize ... I

wasn't having such positive thoughts prior to that,

and nothing has changed or shifted, no lifechanging

aha moment, nothing. I can only point it to one

thing.

>

> I'll show it to Dr. G though. He might be fully

> knowledgeable of all

> the researchers and dozens of clinical studies

> performed himself.

***** You're likely to start a rant. LOL! He'll

get on his soapbox so hard-core about the system

blaming psych on CFIDS you won't have time to talk to

him about anything else. Might wanna wait a

while before getting into that topic. And don't ask

about chelation either.

> There is no questionable doubt that the methods

> reduce circulating

> stress hormones (cortisol) which act directly on the

> immune system's

> efficiency.

> I have significant long sustained diagnosis of

> several other mental

> difficulties/illnesses which are well known to

> correlate with high

> levels of cortisol; which was the quintessential

> reason I was

>

=== message truncated ===

********* Lord knows i have stress hormones surging

thru my body. I really really do need to read that

book.

The message on the reply cuts off here. I can still

go back to the original email and cut and paste - so

don't worry. But I'm going to sign on off tonight to

get ready for the week ahead. I'll still finish.

I'm sorry it has taken me so long to redo it even

this far. You can see why it time out lol. j

Talk to ya later...

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