Re: Worst systemic pain ever, plus 4 month virus.

[Guest guest]

Dear

Selfishly it wears me out to read such posts----so sorry to read of your

suffering. I am NOT one of the scientific minded here on the forum. I have

climbed out of my bed bound CFS over the last 15 years. Question one----is it

time for a new doctor? Question two---have you ever considered going to one of

the FFC's??? Question three---have you ever treated parasites?? And

lastly----have you ever done coffee enemas to relieve your liver? I have done

all four, each helped me gain good functioning, with reasonable pacing.

God Bless,

Sara

>

> Hi all.

>

> Going through a very hard time at the moment. As some know been dealing with

major adrenal issues since late 2008. That has been the biggest challenge of my

10+ years of CFS/FM so far. 2.5 years on hydrocortisone and I still havent found

a stable dose. I'm better than I was in the begginning thats for sure (hospital

every week with crashing blood pressure).

>

> However, cortisone in general has worsened nearly every aspect of my CFS.

Brain/cognitive function almost came to a halt when I started it, and that

hasn't changed. Fatigue much worse, immune system, light and noise sensitivity

much worse, etc.

>

> Before the adrenal crash I used to at least go out about once a day by myself

in the car, just to shops & post office etc. I'd be ok, get home be exhausted,

just lay down still for 2+hrs then gradually come around. Now I have been mostly

housebound pretty much for the whole time since being on HC. I can only do

anything really late at night when no one's up and nothing's open. I can cook

though and do minor housework between things.

>

> I think it's likely due to having very poor drug tolerance / processing (poor

liver detox/low gultathione etc) in general as to why it doesn't work so well. I

have to have it to live however. I dose about 8 times a day and am STILL very up

and down between doses. Im trying to work out a way to improve this aspect as if

I could get that stable I think many aspects may improve.

>

> Getting to this year and the point. I got a major virus (flu like) late

January. This required doubling the HC dose almost, up to 70mg (which is very

high if you know about HC doses). This happens with anyone with adrenal

insufficiency / addisons if they get a major bug, it always requires a double or

even triple dose. Was very rough. So was at the high dose for 2 weeks then as it

passed got it back down to my usual 40mg. However the virus didn't totally leave

so it seemed.. for the next few months I've still had a sore upper respiratory,

left lung and throat. Taking a strong combination of echinacea, andrographis,

olive leaf etc 4x a day is the ONLY thing that has helped it be any less severe.

Soon as I stop them it gets much worse.

>

> Now in early May, I got ANOTHER major virus/flu, requiring raising HC back up

to 70mg and some days 80mg for another 2 weeks. It's only just started turning

around the last 4-5 days. I'm back down to 50mg HC at the moment, but I'm a

complete wreck from all this.

>

> Also the other point of this post - im not sure if it's due to the viral

activity, but my systemic pain - muscle & joint etc (fibro flares), has been

worse than ever in the course of 10 years. Generally before this, it's usually

been say, a flare somewhere in the morning, then again in the afternoon - pain

builds up to a point then gradually releases over 1-3hrs of resting, (as fibro

flare cycles go for most).

>

> This year though, the flares have been getting longer and more intense. Many

days I will get the worst flare of systemic burning pain, everywhere, and the

body will stay stiff and terribly painful sometimes 12+ hours straight without a

break, and has at times left me in tears. I'm usually very patient and tolerant

(especially seeing as I can't tolerate any pain meds), but this has been

incredible. Sometimes it's been there almost 24hrs, and if that pain doesn't

release, I cannot function to do anything, the body and brain are too " stiff " so

to speak.

>

> So that's what's going on at the moment. Quite concerning considering its such

a significant increase in symptoms in a short time. I assume it's possibly the

viral activity, but what would make this last so long unrelentingly? That's the

ever frustrating question.

>

> Not sure if anyone will be able to help, but thought i'd share. Having done so

many years of research and tried/trying so many treatments, I'm just so

frusrated & not getting where I need to be.

>

> ~Chris.

>

[Guest guest]

Are you allergic to cortisol? That can cause weird things to happen. I have

adrenal problems, but when we try to add cortisol, it puts me to sleep. It

should wake me up.

Also are you taking fludrocortisone? It's used when the aldosterone level is

low, which can be the case with adrenal burnout. It's used to increase your

blood pressure. And balances your salt and water. For me it helped greatly with

thirst that I've had for years.

best,

Raven

>

> Hi all.

>

> Going through a very hard time at the moment. As some know been dealing with

major adrenal issues since late 2008. That has been the biggest challenge of my

10+ years of CFS/FM so far. 2.5 years on hydrocortisone and I still havent found

a stable dose. I'm better than I was in the begginning thats for sure (hospital

every week with crashing blood pressure).

>

> However, cortisone in general has worsened nearly every aspect of my CFS.

Brain/cognitive function almost came to a halt when I started it, and that

hasn't changed. Fatigue much worse, immune system, light and noise sensitivity

much worse, etc.

>

> Before the adrenal crash I used to at least go out about once a day by myself

in the car, just to shops & post office etc. I'd be ok, get home be exhausted,

just lay down still for 2+hrs then gradually come around. Now I have been mostly

housebound pretty much for the whole time since being on HC. I can only do

anything really late at night when no one's up and nothing's open. I can cook

though and do minor housework between things.

>

> I think it's likely due to having very poor drug tolerance / processing (poor

liver detox/low gultathione etc) in general as to why it doesn't work so well. I

have to have it to live however. I dose about 8 times a day and am STILL very up

and down between doses. Im trying to work out a way to improve this aspect as if

I could get that stable I think many aspects may improve.

>

> Getting to this year and the point. I got a major virus (flu like) late

January. This required doubling the HC dose almost, up to 70mg (which is very

high if you know about HC doses). This happens with anyone with adrenal

insufficiency / addisons if they get a major bug, it always requires a double or

even triple dose. Was very rough. So was at the high dose for 2 weeks then as it

passed got it back down to my usual 40mg. However the virus didn't totally leave

so it seemed.. for the next few months I've still had a sore upper respiratory,

left lung and throat. Taking a strong combination of echinacea, andrographis,

olive leaf etc 4x a day is the ONLY thing that has helped it be any less severe.

Soon as I stop them it gets much worse.

>

> Now in early May, I got ANOTHER major virus/flu, requiring raising HC back up

to 70mg and some days 80mg for another 2 weeks. It's only just started turning

around the last 4-5 days. I'm back down to 50mg HC at the moment, but I'm a

complete wreck from all this.

>

> Also the other point of this post - im not sure if it's due to the viral

activity, but my systemic pain - muscle & joint etc (fibro flares), has been

worse than ever in the course of 10 years. Generally before this, it's usually

been say, a flare somewhere in the morning, then again in the afternoon - pain

builds up to a point then gradually releases over 1-3hrs of resting, (as fibro

flare cycles go for most).

>

> This year though, the flares have been getting longer and more intense. Many

days I will get the worst flare of systemic burning pain, everywhere, and the

body will stay stiff and terribly painful sometimes 12+ hours straight without a

break, and has at times left me in tears. I'm usually very patient and tolerant

(especially seeing as I can't tolerate any pain meds), but this has been

incredible. Sometimes it's been there almost 24hrs, and if that pain doesn't

release, I cannot function to do anything, the body and brain are too " stiff " so

to speak.

>

> So that's what's going on at the moment. Quite concerning considering its such

a significant increase in symptoms in a short time. I assume it's possibly the

viral activity, but what would make this last so long unrelentingly? That's the

ever frustrating question.

>

> Not sure if anyone will be able to help, but thought i'd share. Having done so

many years of research and tried/trying so many treatments, I'm just so

frusrated & not getting where I need to be.

>

> ~Chris.

>

[Guest guest]

Hi

I have recently read that if one is on HC it lowers androgens. Checking free

testosterone might be something you can look into. Also, have you had a full

thyroid work-up? By that I mean tsh, free t3, free t4, and the two antibody

tests...TPOab (thyroid peroxidase) and TgAb (antithyroglobulin).

Sometimes adrenals get weak due to the thyroid being low for a period of time.

Also, what about the aldosterone part of your adrenals. Has that been tested?

If you have low BP that could be caused by low aldosterone. Some people need to

treat with HC and florinef...or at least lots of salt water.

There is a good forum that i have recently found that has lots of good info on

all the things I have mentioned. If you are interested email me privately, as

I'm not always checking this forum. Deb

>

> Hi all.

>

> Going through a very hard time at the moment. As some know been dealing with

major adrenal issues since late 2008. That has been the biggest challenge of my

10+ years of CFS/FM so far. 2.5 years on hydrocortisone and I still havent found

a stable dose. I'm better than I was in the begginning thats for sure (hospital

every week with crashing blood pressure).

>

> However, cortisone in general has worsened nearly every aspect of my CFS.

Brain/cognitive function almost came to a halt when I started it, and that

hasn't changed. Fatigue much worse, immune system, light and noise sensitivity

much worse, etc.

>

> Before the adrenal crash I used to at least go out about once a day by myself

in the car, just to shops & post office etc. I'd be ok, get home be exhausted,

just lay down still for 2+hrs then gradually come around. Now I have been mostly

housebound pretty much for the whole time since being on HC. I can only do

anything really late at night when no one's up and nothing's open. I can cook

though and do minor housework between things.

>

> I think it's likely due to having very poor drug tolerance / processing (poor

liver detox/low gultathione etc) in general as to why it doesn't work so well. I

have to have it to live however. I dose about 8 times a day and am STILL very up

and down between doses. Im trying to work out a way to improve this aspect as if

I could get that stable I think many aspects may improve.

>

> Getting to this year and the point. I got a major virus (flu like) late

January. This required doubling the HC dose almost, up to 70mg (which is very

high if you know about HC doses). This happens with anyone with adrenal

insufficiency / addisons if they get a major bug, it always requires a double or

even triple dose. Was very rough. So was at the high dose for 2 weeks then as it

passed got it back down to my usual 40mg. However the virus didn't totally leave

so it seemed.. for the next few months I've still had a sore upper respiratory,

left lung and throat. Taking a strong combination of echinacea, andrographis,

olive leaf etc 4x a day is the ONLY thing that has helped it be any less severe.

Soon as I stop them it gets much worse.

>

> Now in early May, I got ANOTHER major virus/flu, requiring raising HC back up

to 70mg and some days 80mg for another 2 weeks. It's only just started turning

around the last 4-5 days. I'm back down to 50mg HC at the moment, but I'm a

complete wreck from all this.

>

> Also the other point of this post - im not sure if it's due to the viral

activity, but my systemic pain - muscle & joint etc (fibro flares), has been

worse than ever in the course of 10 years. Generally before this, it's usually

been say, a flare somewhere in the morning, then again in the afternoon - pain

builds up to a point then gradually releases over 1-3hrs of resting, (as fibro

flare cycles go for most).

>

> This year though, the flares have been getting longer and more intense. Many

days I will get the worst flare of systemic burning pain, everywhere, and the

body will stay stiff and terribly painful sometimes 12+ hours straight without a

break, and has at times left me in tears. I'm usually very patient and tolerant

(especially seeing as I can't tolerate any pain meds), but this has been

incredible. Sometimes it's been there almost 24hrs, and if that pain doesn't

release, I cannot function to do anything, the body and brain are too " stiff " so

to speak.

>

> So that's what's going on at the moment. Quite concerning considering its such

a significant increase in symptoms in a short time. I assume it's possibly the

viral activity, but what would make this last so long unrelentingly? That's the

ever frustrating question.

>

> Not sure if anyone will be able to help, but thought i'd share. Having done so

many years of research and tried/trying so many treatments, I'm just so

frusrated & not getting where I need to be.

>

> ~Chris.

>

[Guest guest]

You might have an allergy to one of the ingredients in the pill,

also. Seems the more you take the worse you feel. Maybe a different

formulation would work better. Corn is a common execipient in pills,

and also a very common allergen. One thing that helps me with systemic

pain when I'm reacting to such things is proteolytic enzymes such as

Enzymatic Therapy's Mega-zyme, or Wobezyme. You'd need to take these on

an empty stomach or they will be wasted just digesting any food. I take

10 at a time, and sometimes another handful an hour later.

The other suggestions are above my pay grade, though. Good ideas.

Jill

On 5/23/2011 3:41 AM, heytrollop wrote:

>

>

>

> Are you allergic to cortisol? That can cause weird things to happen. I

> have adrenal problems, but when we try to add cortisol, it puts me to

> sleep. It should wake me up.

>

> Also are you taking fludrocortisone? It's used when the aldosterone

> level is low, which can be the case with adrenal burnout. It's used to

> increase your blood pressure. And balances your salt and water. For me

> it helped greatly with thirst that I've had for years.

>

> best,

> Raven

>

>

[Guest guest]

People with severe adrenal fatigue need to avoid caffeine. CEs can give a buzz.

Ellen

>And lastly----have you ever done coffee enemas to relieve your liver? I have

done all four, each helped me gain good functioning, with reasonable pacing.

God Bless,

Sara

[Guest guest]

I changed compounding pharmacys once----then became ill----it was the

filler---they used a lactose filler I now get all my meds through Wellness

Pharmacy out of Alabama.

God Bless,

Sara

> >

> >

> >

> > Are you allergic to cortisol? That can cause weird things to happen. I

> > have adrenal problems, but when we try to add cortisol, it puts me to

> > sleep. It should wake me up.

> >

> > Also are you taking fludrocortisone? It's used when the aldosterone

> > level is low, which can be the case with adrenal burnout. It's used to

> > increase your blood pressure. And balances your salt and water. For me

> > it helped greatly with thirst that I've had for years.

> >

> > best,

> > Raven

> >

> >

>

[Guest guest]

Hi Ellen,

I completely agree with you about adrenal fatigue and caffeine but....

if you do a coffee enema correctly, you will not get a buzz. If you do get a

buzz, you are doing the enema incorrectly.

As I am sure you know, the mechanism that makes the coffee enema work is the

stimulation of a nerve in the anal area (less than 4 " from the outside). The

caffeine stimulates this nerve which signals ducts in the liver to dilate,

therefore dumping the contents into the intestines to be removed from the body.

If the liquid is inserted too high up in the area, then the caffeine is absorbed

into the bloodstream which causes the buzz. This may or may not also trigger the

desired nerve, depending on how long the coffee was in proximity of the nerve

but the absorption of the caffeine is not a desired effect.

Other tricks include slightly reclining or sitting rather than laying back.

Also, remaining on left side instead of flat on back or the right side, or the

other common way to do a cleanse (left, then rotate to the back then rotate to

right side). Lastly, reducing the amount of the liquid also helps to keep the

caffeine in the lower 4 " . Since coffee enemas are not cleansing enemas, only a

couple of ounces are needed. I use a clean, empty Fleet enema bottle which only

holds 4 ounces. I use about half of that at a time.

This reminds me to get back on these as I have been lazy.

Thanks for the reminder.

Marti

>

> People with severe adrenal fatigue need to avoid caffeine. CEs can give a

buzz.

>

> Ellen

>

> >And lastly----have you ever done coffee enemas to relieve your liver? I have

done all four, each helped me gain good functioning, with reasonable pacing.

>

> God Bless,

> Sara

>

>

>

[Guest guest]

Marti, thank you for that reminder about the coffee enemas----and how easy your

make it I was saved after initial " sudden onset " by six months of daily

coffee enemas!! Your details make it so easy---I'm off to buy organic coffee

God Bless,

Sara

> >

> > People with severe adrenal fatigue need to avoid caffeine. CEs can give a

buzz.

> >

> > Ellen

> >

> > >And lastly----have you ever done coffee enemas to relieve your liver? I

have done all four, each helped me gain good functioning, with reasonable

pacing.

> >

> > God Bless,

> > Sara

> >

> >

> >

[Guest guest]

Thanks a lot guys. Will try to answer everyone at once here:

Sara: Lol, sorry about that. Maybe skip the posts that get too intense before

you finish Glad you're improving with CFS even if it has taken that long, I

am determined to do the same no matter how bad things get. A new Dr? Lol, I've

probably seen over 50 in the last 10 years including every type you can think

of. But yes a new one would be good, as I dont even have a regular GP at the mo,

can rarely get out to see them. Can't go to an FFC much as I'd like to, as i'm

in Australia. Have tried treating parasites with herbs and the usual worm drugs,

but never seen great benefit. Maybe a stricter more thorough treatment would be

good. Lastly, I've only just started on the idea of coffee enemas since

researching Gerson Therapy. Looks promising and so far hasnt hurt, apart from

being a bit draining. Will keep onto these as they are definitely a useful tool.

Raven: If I'm 'allergic' to cortisol, I'm pretty much screwed as I need it to

live! I think intolerant is more the word. And Im not sure its a case of that,

but just poor liver detox & drug processing is more the issue. The 'getting

sleepy' thing on cortisol is common. It can be because when you have low

cortisol, the body puts out more adrenaline, which keeps you WELL awake and

alert. When you give cortisol it suddenly lets the system crash beacuse it

doesnt have to depend on adrenaline anymore, and 'turns the adrenaline tap off'

so to speak. This causes great drowsiness for many when first going on HC. Yes

my aldosterone is very low, and in theory I need Fludrocortisone. However im

very intolerant and it gives me a splitting 8-12hr migraine even from like 1/8th

of a tablet. Very unfortunate as I'm sure it would help 'keep me up' for alot

more of the day on a lower dose of HC. I have started licorice root again for

this, as it has aldosterone like properties.

Jill: Definitely not the fillers. I take other tablets like zantac/zyrtec &

valium which have the same fillers as my HC pills with zero similar effects. Its

definitely the cortisol that doesnt process well causing the effects. Have had

compounded pure coritisol caps from a compounding pharmacy with same results. As

for enzymes, good idea. I take digestive enzymes but not many at a time, helps

mildly. Do you take wobenzym for systemic pain etc? I tried them years ago but

not in huge doses, I think this could be a good idea. Expensive taking so many?

Deb: Thanks. I have had Thyroid checked including TSH, FT3/4 but they were

relatively normal, about mid range I think. That was when i just started HC, so

not sure what they're like now. Did have a blood test the other day but I think

the endo only had tsh and T4 down (as they do). Hard to get checked for the good

stuff as they always say " we only test those if TSH is abnormal " - ugh! Don't

know if i've had the antibodies tested for thyroid though. As for androgens, not

really an issue as i've been on replacement testosterone for the whole 10yrs of

my CFS.

Ellen/Marti: Thanks both! Yes true the coffee enema shouldnt give a buzz as it

works very differently explained by Marti. I was sure about that aspect either

Marti, as Gerson Therapy reccommends 500ml coffee enemas! But as it only needs

to sit very close to the rectum to be absorbed up to the liver, I also

hypothesized that a very low amount of liquid would be needed. I've started

doing them at a low dose of coffee with less than one cup of liquid or so. I

feel that large volume isnt needed for the intended purpose. Even less liquid is

an even better idea imo! As I feel more liquid can kind of lead to enema

dependance.

Thanks again for the ideas all! Hugs.

~Chris.

----------------------

32, Male

5'9, 65kg (143lb)

Secondary AI, CFS/MCS/FM

40mg HC, 50mg Testogel

Licorice root, Vit C, Mag, D3 & other supps.

Melbourne, Australia.

http://facebook.com/chriseraphim

----------------------

> >

> > Hi all.

> >

> > Going through a very hard time at the moment. As some know been dealing with

major adrenal issues since late 2008. That has been the biggest challenge of my

10+ years of CFS/FM so far. 2.5 years on hydrocortisone and I still havent found

a stable dose. I'm better than I was in the begginning thats for sure (hospital

every week with crashing blood pressure).

> >

> > However, cortisone in general has worsened nearly every aspect of my CFS.

Brain/cognitive function almost came to a halt when I started it, and that

hasn't changed. Fatigue much worse, immune system, light and noise sensitivity

much worse, etc.

> >

> > Before the adrenal crash I used to at least go out about once a day by

myself in the car, just to shops & post office etc. I'd be ok, get home be

exhausted, just lay down still for 2+hrs then gradually come around. Now I have

been mostly housebound pretty much for the whole time since being on HC. I can

only do anything really late at night when no one's up and nothing's open. I can

cook though and do minor housework between things.

> >

> > I think it's likely due to having very poor drug tolerance / processing

(poor liver detox/low gultathione etc) in general as to why it doesn't work so

well. I have to have it to live however. I dose about 8 times a day and am STILL

very up and down between doses. Im trying to work out a way to improve this

aspect as if I could get that stable I think many aspects may improve.

> >

> > Getting to this year and the point. I got a major virus (flu like) late

January. This required doubling the HC dose almost, up to 70mg (which is very

high if you know about HC doses). This happens with anyone with adrenal

insufficiency / addisons if they get a major bug, it always requires a double or

even triple dose. Was very rough. So was at the high dose for 2 weeks then as it

passed got it back down to my usual 40mg. However the virus didn't totally leave

so it seemed.. for the next few months I've still had a sore upper respiratory,

left lung and throat. Taking a strong combination of echinacea, andrographis,

olive leaf etc 4x a day is the ONLY thing that has helped it be any less severe.

Soon as I stop them it gets much worse.

> >

> > Now in early May, I got ANOTHER major virus/flu, requiring raising HC back

up to 70mg and some days 80mg for another 2 weeks. It's only just started

turning around the last 4-5 days. I'm back down to 50mg HC at the moment, but

I'm a complete wreck from all this.

> >

> > Also the other point of this post - im not sure if it's due to the viral

activity, but my systemic pain - muscle & joint etc (fibro flares), has been

worse than ever in the course of 10 years. Generally before this, it's usually

been say, a flare somewhere in the morning, then again in the afternoon - pain

builds up to a point then gradually releases over 1-3hrs of resting, (as fibro

flare cycles go for most).

> >

> > This year though, the flares have been getting longer and more intense. Many

days I will get the worst flare of systemic burning pain, everywhere, and the

body will stay stiff and terribly painful sometimes 12+ hours straight without a

break, and has at times left me in tears. I'm usually very patient and tolerant

(especially seeing as I can't tolerate any pain meds), but this has been

incredible. Sometimes it's been there almost 24hrs, and if that pain doesn't

release, I cannot function to do anything, the body and brain are too " stiff " so

to speak.

> >

> > So that's what's going on at the moment. Quite concerning considering its

such a significant increase in symptoms in a short time. I assume it's possibly

the viral activity, but what would make this last so long unrelentingly? That's

the ever frustrating question.

> >

> > Not sure if anyone will be able to help, but thought i'd share. Having done

so many years of research and tried/trying so many treatments, I'm just so

frusrated & not getting where I need to be.

> >

> > ~Chris.

> >

>

[Guest guest]

How are you tolerating the low-volume CE's? No jitters?

Ellen

>I've started doing them at a low dose of coffee with less than one cup of

liquid or so. I feel that large volume isnt needed for the intended purpose.

Even less liquid is an even better idea imo! As I feel more liquid can kind of

lead to enema dependance.

Thanks again for the ideas all! Hugs.

~Chris<

[Guest guest]

Hey Ellen. Seeing as I use a lower dose of coffee so far, I don't get jitters.

Just a bit drained after I do one. Drinking coffee makes me feel very sick

(toxic) but these dont at all which is interesting. If one gets jitters I think

they would be using too much coffee for them particularly. Starting at a lower

dose like I am is the way to go!

~C.

>

>

>

> How are you tolerating the low-volume CE's? No jitters?

>

> Ellen

>

>

> >I've started doing them at a low dose of coffee with less than one cup of

liquid or so. I feel that large volume isnt needed for the intended purpose.

Even less liquid is an even better idea imo! As I feel more liquid can kind of

lead to enema dependance.

>

> Thanks again for the ideas all! Hugs.

>

> ~Chris<

>

>

[Guest guest]

I am going to STILL suggest the FFC protocol, because the basics are met, giving

most a base line, from which to start healing. Buy Dr. T's book, From Fatigue

to Fantastic. The lab work etc is in the book, and available to download from

his web site, www.endfatigue.com

The staff person, Cheryl, can guide you----$45 for half hour---very reasonable

charge, and wonderful gal.

Have " we " here suggested LDN? I had a major lift in body strength when I

started LDN. Recently many articles/comments, that LDN is helping Fibro.

Keep searching, you WILL get better.

God Bless,

Sara

> > >

> > > Hi all.

> > >

> > > Going through a very hard time at the moment. As some know been dealing

with major adrenal issues since late 2008. That has been the biggest challenge

of my 10+ years of CFS/FM so far. 2.5 years on hydrocortisone and I still havent

found a stable dose. I'm better than I was in the begginning thats for sure

(hospital every week with crashing blood pressure).

> > >

> > > However, cortisone in general has worsened nearly every aspect of my CFS.

Brain/cognitive function almost came to a halt when I started it, and that

hasn't changed. Fatigue much worse, immune system, light and noise sensitivity

much worse, etc.

> > >

> > > Before the adrenal crash I used to at least go out about once a day by

myself in the car, just to shops & post office etc. I'd be ok, get home be

exhausted, just lay down still for 2+hrs then gradually come around. Now I have

been mostly housebound pretty much for the whole time since being on HC. I can

only do anything really late at night when no one's up and nothing's open. I can

cook though and do minor housework between things.

> > >

> > > I think it's likely due to having very poor drug tolerance / processing

(poor liver detox/low gultathione etc) in general as to why it doesn't work so

well. I have to have it to live however. I dose about 8 times a day and am STILL

very up and down between doses. Im trying to work out a way to improve this

aspect as if I could get that stable I think many aspects may improve.

> > >

> > > Getting to this year and the point. I got a major virus (flu like) late

January. This required doubling the HC dose almost, up to 70mg (which is very

high if you know about HC doses). This happens with anyone with adrenal

insufficiency / addisons if they get a major bug, it always requires a double or

even triple dose. Was very rough. So was at the high dose for 2 weeks then as it

passed got it back down to my usual 40mg. However the virus didn't totally leave

so it seemed.. for the next few months I've still had a sore upper respiratory,

left lung and throat. Taking a strong combination of echinacea, andrographis,

olive leaf etc 4x a day is the ONLY thing that has helped it be any less severe.

Soon as I stop them it gets much worse.

> > >

> > > Now in early May, I got ANOTHER major virus/flu, requiring raising HC back

up to 70mg and some days 80mg for another 2 weeks. It's only just started

turning around the last 4-5 days. I'm back down to 50mg HC at the moment, but

I'm a complete wreck from all this.

> > >

> > > Also the other point of this post - im not sure if it's due to the viral

activity, but my systemic pain - muscle & joint etc (fibro flares), has been

worse than ever in the course of 10 years. Generally before this, it's usually

been say, a flare somewhere in the morning, then again in the afternoon - pain

builds up to a point then gradually releases over 1-3hrs of resting, (as fibro

flare cycles go for most).

> > >

> > > This year though, the flares have been getting longer and more intense.

Many days I will get the worst flare of systemic burning pain, everywhere, and

the body will stay stiff and terribly painful sometimes 12+ hours straight

without a break, and has at times left me in tears. I'm usually very patient and

tolerant (especially seeing as I can't tolerate any pain meds), but this has

been incredible. Sometimes it's been there almost 24hrs, and if that pain

doesn't release, I cannot function to do anything, the body and brain are too

" stiff " so to speak.

> > >

> > > So that's what's going on at the moment. Quite concerning considering its

such a significant increase in symptoms in a short time. I assume it's possibly

the viral activity, but what would make this last so long unrelentingly? That's

the ever frustrating question.

> > >

> > > Not sure if anyone will be able to help, but thought i'd share. Having

done so many years of research and tried/trying so many treatments, I'm just so

frusrated & not getting where I need to be.

> > >

> > > ~Chris.

> > >

> >

>

[Guest guest]

OH, and one more thing----in relation to the parasites---have you ever done a

full 20 days of Flagyl??? I was in a deep brain fog--my integrative MD looked

at me and said, " parasites " -----the Dark Field blood sample confirmed----at day

10 of the 20 day prescription the fog/fatigue lifted!!! By day 20, my family

thought I was manic!!!

NOW, second or third try, didn't do the same

Don't forget to take mega probiotics.

God Bless,

Sara

> > >

> > > Hi all.

> > >

> > > Going through a very hard time at the moment. As some know been dealing

with major adrenal issues since late 2008. That has been the biggest challenge

of my 10+ years of CFS/FM so far. 2.5 years on hydrocortisone and I still havent

found a stable dose. I'm better than I was in the begginning thats for sure

(hospital every week with crashing blood pressure).

> > >

> > > However, cortisone in general has worsened nearly every aspect of my CFS.

Brain/cognitive function almost came to a halt when I started it, and that

hasn't changed. Fatigue much worse, immune system, light and noise sensitivity

much worse, etc.

> > >

> > > Before the adrenal crash I used to at least go out about once a day by

myself in the car, just to shops & post office etc. I'd be ok, get home be

exhausted, just lay down still for 2+hrs then gradually come around. Now I have

been mostly housebound pretty much for the whole time since being on HC. I can

only do anything really late at night when no one's up and nothing's open. I can

cook though and do minor housework between things.

> > >

> > > I think it's likely due to having very poor drug tolerance / processing

(poor liver detox/low gultathione etc) in general as to why it doesn't work so

well. I have to have it to live however. I dose about 8 times a day and am STILL

very up and down between doses. Im trying to work out a way to improve this

aspect as if I could get that stable I think many aspects may improve.

> > >

> > > Getting to this year and the point. I got a major virus (flu like) late

January. This required doubling the HC dose almost, up to 70mg (which is very

high if you know about HC doses). This happens with anyone with adrenal

insufficiency / addisons if they get a major bug, it always requires a double or

even triple dose. Was very rough. So was at the high dose for 2 weeks then as it

passed got it back down to my usual 40mg. However the virus didn't totally leave

so it seemed.. for the next few months I've still had a sore upper respiratory,

left lung and throat. Taking a strong combination of echinacea, andrographis,

olive leaf etc 4x a day is the ONLY thing that has helped it be any less severe.

Soon as I stop them it gets much worse.

> > >

> > > Now in early May, I got ANOTHER major virus/flu, requiring raising HC back

up to 70mg and some days 80mg for another 2 weeks. It's only just started

turning around the last 4-5 days. I'm back down to 50mg HC at the moment, but

I'm a complete wreck from all this.

> > >

> > > Also the other point of this post - im not sure if it's due to the viral

activity, but my systemic pain - muscle & joint etc (fibro flares), has been

worse than ever in the course of 10 years. Generally before this, it's usually

been say, a flare somewhere in the morning, then again in the afternoon - pain

builds up to a point then gradually releases over 1-3hrs of resting, (as fibro

flare cycles go for most).

> > >

> > > This year though, the flares have been getting longer and more intense.

Many days I will get the worst flare of systemic burning pain, everywhere, and

the body will stay stiff and terribly painful sometimes 12+ hours straight

without a break, and has at times left me in tears. I'm usually very patient and

tolerant (especially seeing as I can't tolerate any pain meds), but this has

been incredible. Sometimes it's been there almost 24hrs, and if that pain

doesn't release, I cannot function to do anything, the body and brain are too

" stiff " so to speak.

> > >

> > > So that's what's going on at the moment. Quite concerning considering its

such a significant increase in symptoms in a short time. I assume it's possibly

the viral activity, but what would make this last so long unrelentingly? That's

the ever frustrating question.

> > >

> > > Not sure if anyone will be able to help, but thought i'd share. Having

done so many years of research and tried/trying so many treatments, I'm just so

frusrated & not getting where I need to be.

> > >

> > > ~Chris.

> > >

> >

>

[Guest guest]

in case not mentioned yet: retroviral glucocorticoid response element

increases replication with more cortisol.

fyi.

--

The Kafka Pandemic: http://thekafkapandemic.blogspot.com

I support the Whittemore- Institute (WPI)

===

I want to see the original (pre-hold) Lo et al. 2010 NIH/FDA/Harvard MRV paper.