Re: In hospital, worst ever been.

[Guest guest]

Hi

I am really sorry to hear of your current status. I will keep you in my

prayers.

I wonder if you have considered seeking out an endocrinologist or someone who

handles 's disease or other related illnesses such as Adrenocortical

hypofunction; Chronic adrenocortical insufficiency; Primary adrenal

insufficiency.

Your symptoms over the years seems less like ME/CFIDS and more like adrenal

insufficiency. Once you have been identified as s', your ME/CFIDS

diagnosis is not applicable. While we may try to help on this forum, most of us

do not have sufficient personal experience as we deal with minor forms of

adrenal insufficiency or for some, excess cortisol (with the resulting drop

below normal for some hours of the day).

Your adrenal issues have been severe over the years and while I hope you stay

here, I do hope that you will also join some forums to find a good

doctor in your area to determine if this is an issue for you. I have found that

doctors trained in Latin American countries and India (especially women) are the

most knowledgeable about the endocrine system (for example, they use 2.0 TSH

rather than 4.0 or higher to diagnose hypothyroidism, etc.)

If you need help researching this, PLEASE let me know. I am happy to help you

in any way.

Please keep us posted and let us know how you are doing.

Sending good thoughts your way,

Marti

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

[Guest guest]

i am so sorry. I am in a similar boat. You are in my thoughts and prayers.

________________________________

From: csharpham <csharpham@...>

Sent: Thursday, December 15, 2011 6:00:06 AM

Subject: In hospital, worst ever been.

 

Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues got

suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

Chris.

Australia.

[Guest guest]

Oh

I seldom even post, but my heart goes out to you and wanted to, in some small

way, show you compassion. You will be in my prayers. Where we go from here,

God only knows.

Tenderly & compassionately,

Gail

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

[Guest guest]

Dear

I hope you can find some comfort in knowing that you are in our prayers.

Ellen

In hospital, worst ever been.

Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

Chris.

Australia.

[Guest guest]

My prayers are with you also, Chris. I can't imagine...

> >

> > Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

> >

> > So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

> >

> > Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

> >

> > Chris.

> > Australia.

> >

>

[Guest guest]

So sorry that you are in the worst place ever. Without knowing everything about

your history I am just going to give you some things that might apply to your

health situation.

Are you having electrolytes checked? When you say you cannot tolerate florinef

what does that mean? Were you on enough salt while taking florinef? Did the

dr.s check potassium levels? RBC potassium is the most accurate, as serum can

look ok. If you need florinef then something has to be causing the intolerance

and my guess would be Na/K out of balance. This can cause muscle weakness among

other symptoms. Most people need to be on extra salt and slow release potassium

when on florinef.

Are you on any thyoid meds? This situation could be a problem with thyroid and

adrenals. I think Marti has a good suggestion about locating a dr. that might

help with this. Or is the dr. that prescribed florinef good with thyroid?

Why are the dr.s having you wean HC when you are so ill right now? You actually

might need a different form of cortisone like medrol, prednisone, etc. Sorry,

but I am not up on why one would use one form over another. I have just read

that in some situations people need to change forms to get results.

Do you have any electrolyte labs that you can post? Even if your sodium is

normal, low normal can make you feel very ill.

Please give us any more info that you can, so we can think for you as your brain

is not working properly.

Deb

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

[Guest guest]

Dr. Teitlebaum has just announced he will be seeing/consulting patients. He

will take patients over the phone. His protocol has saved my life. Office

number for information is, 410-573-5389

Praying for you----with the others.

God Bless,

>

> Dear

>

> I hope you can find some comfort in knowing that you are in our prayers.

>

> Ellen

>

> In hospital, worst ever been.

>

>

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

>

>

>

>

>

[Guest guest]

Hi, Chris.

I'm praying for you, too. I hope they will try to get some nutrition into your

body intravenously.

Best regards,

Rich

>

> Dear

>

> I hope you can find some comfort in knowing that you are in our prayers.

>

> Ellen

>

> In hospital, worst ever been.

>

>

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

>

>

>

>

>

[Guest guest]

My thoughts exactly on the IV nutrition. There's a great story of a guy who

received TPN and IV antibiotics and had his health turn around completely within

a week following a long bout with this illness. I sent you the info yesterday

via private message. Hope you got it. If not here's the link to a thread I

started on PR about three guys who essentially recovered after receiving IV

nutrition for a period. I expect others might also find this interesting so

it's just as well I post it here.

If I were in your shoes I'd refuse to eat and make them give it to me, but

that's me. I believe I read your blog a short while ago and it indicated you

were already considerably under weight. As were the three patients who

recovered. The IV ABX is probably a good idea too if you should choose to go

this way. Something along the lines of what Ken Nightengale received: Flagyl

and Cipro. Though you might want to substitute something else for the Cipro. I

don't know how sympathetic or open-minded your doctors are, but in my opinion

this is seriously worth a go.

We're pulling for you.

Graeme (the guy you swapped videos with a year or two ago)

forums.phoenixrising.me/showthread.php?8228-A-Role-for-TPN-in-CFS & highlight=grae\

me

From: richvank@...

Date: Fri, 16 Dec 2011 17:14:14 +0000

Subject: Re: In hospital, worst ever been.

Hi, Chris.

I'm praying for you, too. I hope they will try to get some nutrition into your

body intravenously.

Best regards,

Rich

>

> Dear

>

> I hope you can find some comfort in knowing that you are in our prayers.

>

> Ellen

>

> In hospital, worst ever been.

>

>

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

>

>

>

>

>

[Guest guest]

if there is some way we can hang on for 1 or 2 more years, i know we will have

treatment and real answers. i know thats a tall order, for me too. at least

lipkin and mikovits are trying to work fast. they know what is at stake.

________________________________

From: rvankonynen <richvank@...>

Sent: Friday, December 16, 2011 12:14:14 PM

Subject: Re: In hospital, worst ever been.

 

Hi, Chris.

I'm praying for you, too. I hope they will try to get some nutrition into your

body intravenously.

Best regards,

Rich

>

> Dear

>

> I hope you can find some comfort in knowing that you are in our prayers.

>

> Ellen

>

> In hospital, worst ever been.

>

>

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

>

>

>

>

>

[Guest guest]

This must be so frightening. I hope you will be able to post soon and tell us

how you are. You are in my thoughts and prayers, and I'm so sad that this has

happened.

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

[Guest guest]

I am sorry to hear that you are so sick! I hope the doctors find a treatment for

you soon.

I suspect that many CFS patients start out with mild, vague symptoms, and get

categorized as a " complainer " or " somatizer. " (That is, doctors think the

problems are " all in the patient's head. " ) Then, when the problems get worse,

their doctors STILL think " this patient is just a complainer/somatizer " and

don't investigate the problems, even if the patient would now qualify for a

diagnosis of a major illness. It sounds like you should have a complete

neurological workup that looks for treatable problems such as Multiple

Sclerosis. I hope you can get your doctors to do a full work-up!

Best wishes,

Judy

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

[Guest guest]

somehow u need to get your hands on tenofovir and glutathione. i wish i could

help..

________________________________

From: judithshapiro <judyshapiro@...>

Sent: Thursday, December 22, 2011 3:55:22 PM

Subject: Re: In hospital, worst ever been.

 

I am sorry to hear that you are so sick! I hope the doctors find a treatment for

you soon.

I suspect that many CFS patients start out with mild, vague symptoms, and get

categorized as a " complainer " or " somatizer. " (That is, doctors think the

problems are " all in the patient's head. " ) Then, when the problems get worse,

their doctors STILL think " this patient is just a complainer/somatizer " and

don't investigate the problems, even if the patient would now qualify for a

diagnosis of a major illness. It sounds like you should have a complete

neurological workup that looks for treatable problems such as Multiple

Sclerosis. I hope you can get your doctors to do a full work-up!

Best wishes,

Judy

>

> Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

>

> So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

>

> Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

>

> Chris.

> Australia.

>

[Guest guest]

Hi Chris-

I am sorry you are in the hospital and so sick. I agree with Deb on what she

said about the electrolytes. The other thing I would add is to make sure you are

well hydrated this will balance out your electrolytes and hopefully help keep

your blood pressure at a decent level. Seeing how you are not eating to much

there is no reason that you shouldn't be able to drink something like Gatorade

or powerade-- this will help replenish your electrolytes.

Good luck and I hope you feel better soon!

~Jackie

> >

> > Hi all. I've been in hospital for 2 weeks as my digestive and fatigue issues

got suddenly worse than ever before. My brain and nerves started tingling badly,

chemical sensitivities and general allergies got worse than ever. Most foods /

meals of things I could easily tolerate a month or 2 ago now cause systemic

reactions. My brain and body shut down after most meals. I often can't move my

muscles because they become weak and twitchy for many hours at a time.

> >

> > So far they have no answers, only found gastritis in the stomach. They are

weaning my HC in here because at home I'd been on 45-50 for most of this year,

if not more due to multiple flus. I've had to look after myself and been totally

intolerant to florinef therefore often had to stress dose just to be able to

cook and do a bit of cleaning etc. Only way I'm weaning in here is because I

don't have to do anything at all and am in bed most of the time. Down to almost

35mg now. Lowest in a year or more.

> >

> > Anyway am in almost constant systemic pain, have lost 8kg (about 20lb) in 2

weeks. I'm not sure what's going to happen but it feels like I'm losing my life.

Am very scared & lonely right now. I know people here won't have the answers,

but just thought I'd let you know. Love to you all!

> >

> > Chris.

> > Australia.

> >

>

[Guest guest]

Hi all.

Thanks.. I haven't heard of tenofovir.. though I know I likely have some sort of

persistent viral illness. I WISH I could tolerate glutathione. Makes me

tremendously sick in every form. One reason Im so sick right now is it feels

like my entire detox system has just bottomed out, as I feel I can't detoxify

anything, including food byproducts etc. Hence only feeling well on water alone.

Allergies, especially chemical sensitivities etc have gotten severely worse,

can't tolerate almost anything in the world.

Actually, the only thing 'saving my life' I feel right now is Sam-e & DMG. I

have always gotten great responses from these in the past, but they cause huge

headaches if I do them every day. Hence only usually did them about twice a

week. Now though, I'm so very toxic and non functional, that if I dont have a

tiny bit of either one every day, my body really feels shut down & unable to

function at all. Ive had to play with doses in hospital and just take tiny bits

of the tablets. It gives me a few 'windows of relief' at least. The windows are

still far from anything normal, but at least they help the severe systemic pain,

brain function and nervous system pain flare ups etc for a while.

Thanks Rich, I wish they would have given me TPN. They won't though because even

though I'm losing weight, its slow because Im still eating, even if it isn't

enough and makes me tremendously sick. Anyway If I get down too low a weight

(which I suspect I might), they would first give a nasogastric tube with that

other nutrition in it. Even though thats easier than solid food and would help

weight gain, it wouldn't help the situation of my health. I've read about those

CFSer's that got TPN and health turned around in a week. I put it to the docs

but they say thats 'too drastic' and wouldn't do it. Shame because I feel it

could save my life and heal my gut a lot in a week. Well in theory anyway.

Unfortunately my path seems similar to Sophia Mirtaza (from youtube, who died).

She was my age, and even though she went through different mainstream medical

'torture', it seems similar, as her mother said eventually she became intolerant

to all foods. That's when she went right downhill & died. I hope I find a way

around this but I'm rather alone and not tolerating most foods, so it's very

scary, and I have no answers.

Not sure if anyone knows why i'd have such severe food reactions. Ive never

heard of anyone with CFS (except sofia) having SUCH bad reactions as I'm having

without *something* else being wrong. Not sure if leaky gut alone could have

such a tremendous effect as this.

I think if I could somehow tolerate glutathione or other detox treatments I'd

have a better chance, seeing as how Im 'haning in there' with Sam-e & DMG. Must

be because of the Methylation and detox effect of them. I still cant do too much

or my brain feels 'swollen' and body is weak in a different way (feels

'overdone'). So delicate a balance, very frustrating, as with everything at the

moment.

Sorry my posts are few & far between, I find it very hard to get to emails and

groups, because my brain is so bad I can hardly use it in a day. Can barely use

the comp compared to before as its mostly stuck, groggy and tingling with nerve

pain. :/

Going back to a 'rehab' hospital tommorrow, been home for the Christmas weekend.

Was nice to be with people but I couldnt participate in any of the celebrations

or food, not the Christmas I had planned. This rehab hosp isnt familiar with

CFS, so I'm likely up for a battle unfortunatley. I have some good documents on

CFS and excercise to give them, and really hoping they will take it in and not

just try to force me to do things at the wrong time, or too excessively, because

that causes SEVERE pem crashes at the moment and ruins me.

One more thing, does anyone have any suggestions for pain? They breifly

mentioned Oxycontin but didnt end up giving it. Dont know how I'd tolerate it

anyway as I can barely tolerate any drugs, but am in SUCH incredible pain

systemically most of the time.

Thanks guys, love to you all.

~Chris.

>

> somehow u need to get your hands on tenofovir and glutathione. i wish i could

help..

[Guest guest]

Hi

Do you have family nearby that can be an advocate for you? If you are near

Houston Texas, I would be happy to help you in any way I could. I couldn't be

at the hospital every day but every other day.

Please let me know - I truly would like to be of assistance to you.

Have you tried Low Dose Naltrexone? It is my only pain relief. I get no energy

from it but others have reported an increase in energy. I take no other pain

relievers. It also can heal colitis and gastro issues. It allows your own

endorphins to do their magic on the immune system so basically it blocks the

receptors that tie up the endorphins so they can be used by the body. If you

don't get the dregs of the bottle (I mix it myself - 1 tablet to 50ml of water)

then you wouldn't have drug toxicity (or very little).

I take 4.5 mg a day but I worked up (not too slowly) as I had been on tramadol.

Please keep us posted. Tell us how we can help.

Marti

> >

> > somehow u need to get your hands on tenofovir and glutathione. i wish i

could help..

>

[Guest guest]

I can also recommend Vitalyte, a powder you mix with water to make an

electrolyte solution. The same (or similar) formula used to be known

as Gookinade, but is now available commercially. It has less

sweeteners, and I like it much better than Gatorade. I find I crave

it, and drink about 8 cups of it a day without even trying.

Marcia on

in Salem, Massachusetts

On Dec 27, 2011, at 9:29 PM, jackie_suz wrote:

> Hi Chris-

>

> I am sorry you are in the hospital and so sick. I agree with Deb on

> what she said about the electrolytes. The other thing I would add is

> to make sure you are well hydrated this will balance out your

> electrolytes and hopefully help keep your blood pressure at a decent

> level. Seeing how you are not eating to much there is no reason that

> you shouldn't be able to drink something like Gatorade or powerade--

> this will help replenish your electrolytes.

>

> Good luck and I hope you feel better soon!

>

> ~Jackie

>

>

> > >

> > > Hi all. I've been in hospital for 2 weeks as my digestive and

> fatigue issues got suddenly worse than ever before. My brain and

> nerves started tingling badly, chemical sensitivities and general

> allergies got worse than ever. Most foods / meals of things I could

> easily tolerate a month or 2 ago now cause systemic reactions. My

> brain and body shut down after most meals. I often can't move my

> muscles because they become weak and twitchy for many hours at a time.

> > >

> > > So far they have no answers, only found gastritis in the

> stomach. They are weaning my HC in here because at home I'd been on

> 45-50 for most of this year, if not more due to multiple flus. I've

> had to look after myself and been totally intolerant to florinef

> therefore often had to stress dose just to be able to cook and do a

> bit of cleaning etc. Only way I'm weaning in here is because I don't

> have to do anything at all and am in bed most of the time. Down to

> almost 35mg now. Lowest in a year or more.

> > >

> > > Anyway am in almost constant systemic pain, have lost 8kg (about

> 20lb) in 2 weeks. I'm not sure what's going to happen but it feels

> like I'm losing my life. Am very scared & lonely right now. I know

> people here won't have the answers, but just thought I'd let you

> know. Love to you all!

> > >

> > > Chris.

> > > Australia.

> > >

> >

>

>

[Guest guest]

Hi

Can you tolerate Vitamin C? If so, it might help your body to detox and in many

other functions. Hopefully this is a relapse and will go the same way it

came.....prayers are continuing!

Found an article about certain viruses found in people with CFS in

Australia...posted it to the 's group.

Peace, Love and Harmony,

Bev

> >

> > somehow u need to get your hands on tenofovir and glutathione. i wish i

could help..

>

[Guest guest]

Hi Chris:)

 

When you say you cannot tolerate Glutathione, what happens when you take it?

Could it be a good sign that it is making you ill? I started glutathione

recently and feel worse, too. Maybe in time it might make you feel better?

 

is it possible for your doctor to contact Dr. Lombardi at UNVEX labs in

Nevada? He is there and they will put your doctor through to him. He can

suggest something to your doctor, as I am sure he knows what is happening with

the latest research.

 

I am so hoping something happens to turn the tables in your favor.

 

Love

Sue

xoxo

________________________________

From: yoganandaom <OM@...>

Sent: Wednesday, December 28, 2011 7:02:04 PM

Subject: Re: In hospital, worst ever been.

 

Hi

Can you tolerate Vitamin C? If so, it might help your body to detox and in many

other functions. Hopefully this is a relapse and will go the same way it

came.....prayers are continuing!

Found an article about certain viruses found in people with CFS in

Australia...posted it to the 's group.

Peace, Love and Harmony,

Bev

> >

> > somehow u need to get your hands on tenofovir and glutathione. i wish i

could help..

>

[Guest guest]

I do believe leaky gut can absolutely cause what you're going through.

Horrible cases are described at www.gapsdiet.com of people at death's door and

suffering for years until the gut was healed. As Hippocrates said, " all disease

starts in the gut. " You may want to check this site. This woman healed her sons

autism; she has a medical, neurology and human nutrition degree. She says all

autoimmune disease/disorder is from a defective gut system which can be

completely healed.

anne

>

>

> > >

> > > somehow u need to get your hands on tenofovir and glutathione. i wish i

could help..

> >

>

[Guest guest]

chris....there will be news about what is causing this in 2 months..you must

hang on!

 

elevated soluble cd 14 testing can indicate leaky gut.

________________________________

From: ms4runr2 <ms4runr@...>

Sent: Friday, December 30, 2011 12:41:39 PM

Subject: Re: In hospital, worst ever been.

 

I do believe leaky gut can absolutely cause what you're going through.

Horrible cases are described at www.gapsdiet.com of people at death's door and

suffering for years until the gut was healed. As Hippocrates said, " all disease

starts in the gut. " You may want to check this site. This woman healed her sons

autism; she has a medical, neurology and human nutrition degree. She says all

autoimmune disease/disorder is from a defective gut system which can be

completely healed.

anne

>

>

> > >

> > > somehow u need to get your hands on tenofovir and glutathione. i wish i

could help..

> >

>