Re: introduction-long

February 14, 2000

Welcome!

There are a tons of things that can be tested for etc.. some results in

information / confirmation or a problem. Others tests lead to direct treatment

of factors that could be a significant part of your illness. The later (tests

that results in treatment that are known to correct specific problems) are

listed below:

Test: Immune System Activation of Coagulation Panel: Treatment:

Prescription blood thinners Info: http://www.hemex.com/cfs/

Test: Mycoplasma PCR Testing Treatment: Long term antibiotics Info:

http://www.immed.org/

Test: Rickettsia PCR Testing Treatment: Long term antibiotics Info:

http://www.folkarts.com/idef/rickettsia.htm

Test: Lyme Disease Testing (LUAT etc) Treatment: Long term

antibiotics Info: http://www.igenex.com/lymeset7.htm

Test: Chlamydia PCR Testing Treatment: Long term antibiotics Info:

http://www.immed.org/

ALL of the above appear to have a 80+% success rate for very significiant

improvement or full recovery, if any test results are positive. Four out of five

treatments above use the same antibiotics - and in some cases (my own for

example), some MDs are willing to give the antibiotics a short term trial (30-60

days) without any testing to identify the exact infection [many MD's gives the

same prescription for Acne, and CFIDS is far more serious than acne]. If the

patient improves significantly OR experiences herxing (see

http://www.folkarts.com/idef/herxheimer.htm for what this means), then one of

them is assumed present and one of the long term antibiotic protocols are

started (Nicolson's or Jadin's). If you test by using antibiotics, the use of

bromelain (a digestive aid) with the antibiotics is suggested to encourage

herxing to show itself... The base antibiotic is one of the twenty most

prescribed drugs in the US and is often prescribed for Acne... so it's very low

risk and not an experimental drug etc.

Then there are a few supplements etc that are generally accepted as effective

helping most CFIDS: B12 (large dosages), B-100's, NADH and whey (see

http://www.folkarts.com/idef/cheney_whey.htm for an introduction).

After that, you step into the world of experimental drugs, higher risk drugs,

specific symptom treatments etc...

Ken Lassesen

2 @ 2 ft PWC, 2 @ 4ft PWC

2 ft PWC: http://www.folkarts.com/idef/

4 ft PWC: http://corgi.folkarts.com/

Fax: (520) 832-6836 ICQ #: 2122097 (Netmeeting too)

Introduction-long

From: gardog@...

Hi there,

I just joined this list last night. But after reading through my first

digest I can see I will have lots of questions!! So I decided I best just

introduce myself and get it over with...

My name is Kimberle' (that's pronounced Kimber-lay) Garwood, I am 34 and had

the original onset of my diseases between the ages of 29-30. I am married to

a very supportive man and have two teenage children, Kristopher, 16, and

Ashli, 14. I have been living in North Carolina for 14 months now, moved

from WV. I am originally from Missouri and lived many years in St. Louis as

a kid.

At the onset of my symptoms I had overwhelming GI upsets so I had many many

tests that resulted in no answers. IBD I was told. My PCP told me I was just

depressed and stressed out-I was, after all, female, turning 30, mother of

two fledgling teenagers and getting married-and here is a Prozac Rx.

Things continued to worsen on a gradual basis until May 1997. Dave and I

were married on the 24th and during the week of our honeymoon I was hit hard

and nasty by this as yet undiagnosed illness. We returned home and over the

course of the next 3 months I got to a point where I could no longer work on

a steady basis and was taking FMLA time off work. I did not return to work

after the end of August. By November I was almost completely bedridden,

getting up to pee, throw-up etc were the only times I managed to make it

from bed. The company I worked for was putting extreme pressure on me to

return to work-but I could not.

My life seemed to have fallen apart. I was the typical type A personality. I

was an amateur body builder, ate all the right foods, did all the right

things. I was a busy supermom, super girlfriend, super employee. Nothing

held me down, nothing stopped me for long. I was too strong. That had all

changed-I was useless lying around with unclean hair and muscles I could no

longer move because they hurt too much. Clothes I could not wear because it

was painful for me to just feel them. I was in danger of losing my job and

therefore half my family's income. I was so depressed and by the end of

November 1997 had gone several weeks without sleep. It seems so obsurd that

a person can be that tired and not be able to go asleep...

I needed sleep so bad, it obsessed my every waking minute. I craved it,

fantasized about it, cried for it, prayed for it. The doctor's kept telling

me there was nothing physically wrong with me that it was all in my head, I

knew that this body I was living in had in some way malfunctioned but I

could not convince anyone in the medical profession. I had finally had

enough-I was a liability to my family and wanted to sleep so badly.

I took out all the sleeping pills, anxiety Rx's, pain pills, everything I

had and placed them in front of me. I sat there for a long time wondering if

I could actually go through with it, but continued to write notes to

everyone I loved. Placed the pills in my hand (could I really do this I

wondered, no, I couldn't, it just wouldn't be possible) and I put them in my

mouth and I swallowed. (Did I really swallow those pills? I cried. I wanted

to go to sleep and escape so badly) I wrote the last letter to my husband

trying to explain to him that I loved him and the children but I could not

bare one more minute. That I thought he'd be better without me and to make

sure that the children had cars and their college education paid for from my

life insurance policies. I went to sleep.

I was told I woke up enough on the trip to the hospital to tell my husband

he was driving like and idiot and was going to kill us. I don't remember. I

do have a dream like recollection of being tubed and having charcoal put

down my throat. But I didn't care, I was asleep...I vaguely remember waking

up once in the emergency room to see my husband standing over me and someone

telling him that I wasn't out of the woods yet that they were concerned

about my heart and other vital organs.

I woke up the next day in the ICU. I felt good. I know this sounds insane

but I had slept for 18 hours and had not felt that good in months. I was

told that one of the pill Rxs I had taken was a nasty one and could have a

permanent effect on my heart. So they were monitoring me. My husband was

there by my side. After I got out of ICU I was placed in the psych ward for

a week. Then in an out patient day program. There my temperature was

monitored several times a day. They recorded daily spikes and because of

this I was sent to Cleveland Clinic Foundation to see the co-chair of their

immunology dept. After he reviewed my symptoms and chart he immediately

diagnosed me with CFS. Later I was diagnosed with Fibromyalgia too.

It was along time before I was sure I wanted to be alive and there are still

times when I doubt. Life wasn't suppose to be this hard! But finally being

diagnosed and having a medical doctor telling me that what I had was legit

helped my mental state so much. This doctor believes in a combination of

treatments. Partly holistic, partly prescription, partly diet/exercise and

partly spiritual.

I have come along way since then. I am on permanent disability from my job.

I am not back to normal yet. I have gained 45-50 pounds in the past two

years (partly due to prednisone treatments) but I am not bedridden anymore

and I do have good days. Some periods of time are better than others. My

mental state is up and down but I am not suicidal anymore. And YES I was

depressed, but aren't most people when they are sick?

So, there you have it. My life in black and white. LOL

I would be very interested in learning about this sleep phase offset thing

that was being discussed. I believe this may be one of my problems.

Sincerley,

Kim Garwood

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February 14, 2000

Hi Ken,

Who is Jadin and where is his protocol?

Thanks a lot,

Christy

In a message dated 2/14/00 8:59:44 AM Pacific Standard Time,

KenL@... writes:

<< eans), then one of them is assumed present and one of the long term

antibiotic protocols are started (Nicolson's or Jadin's). If yo >>

February 16, 2000

Ken,

Which are the bacteria that can be treated with the same

protocol? I have two species of mycoplasma and would like not to test

for organisms which call for the same protocol as does mycoplasma.

Thanks,

Kathleen

Ken Lassesen wrote:

> From: " Ken Lassesen " <KenL@...>

>

> Welcome! There are a tons of things that can be tested for etc..

> some results in information / confirmation or a problem. Others tests

> lead to direct treatment of factors that could be a significant part

> of your illness. The later (tests that results in treatment that are

> known to correct specific problems) are listed below: Test:

> Immune System Activation of Coagulation Panel: Treatment:

> Prescription blood thinners Info: http://www.hemex.com/cfs/

> Test: Mycoplasma PCR Testing Treatment: Long term antibiotics

> Info: http://www.immed.org/ Test: Rickettsia PCR Testing

> Treatment: Long term antibiotics Info:

> http://www.folkarts.com/idef/rickettsia.htm Test: Lyme Disease

> Testing (LUAT etc) Treatment: Long term antibiotics Info:

> http://www.igenex.com/lymeset7.htm Test: Chlamydia PCR

> Testing Treatment: Long term antibiotics Info:

> http://www.immed.org/ ALL of the above appear to have a 80+% success

> rate for very significiant improvement or full recovery, if any test

> results are positive. Four out of five treatments above use the same

> antibiotics - and in some cases (my own for example), some MDs are

> willing to give the antibiotics a short term trial (30-60 days)

> without any testing to identify the exact infection [many MD's gives

> the same prescription for Acne, and CFIDS is far more serious than

> acne]. If the patient improves significantly OR experiences herxing

> (see http://www.folkarts.com/idef/herxheimer.htm for what this means),

> then one of them is assumed present and one of the long term

> antibiotic protocols are started (Nicolson's or Jadin's). If you test

> by using antibiotics, the use of bromelain (a digestive aid) with the

> antibiotics is suggested to encourage herxing to show itself... The

> base antibiotic is one of the twenty most prescribed drugs in the US

> and is often prescribed for Acne... so it's very low risk and not an

> experimental drug etc. Then there are a few supplements etc that are

> generally accepted as effective helping most CFIDS: B12 (large

> dosages), B-100's, NADH and whey (see

> http://www.folkarts.com/idef/cheney_whey.htm for an

> introduction). After that, you step into the world of experimental

> drugs, higher risk drugs, specific symptom treatments etc... Ken

> Lassesen

> 2 @ 2 ft PWC, 2 @ 4ft PWC

> 2 ft PWC: http://www.folkarts.com/idef/

> 4 ft PWC: http://corgi.folkarts.com/

> Fax: (520) 832-6836 ICQ #: 2122097 (Netmeeting too)

>

> Introduction-long

> From: gardog@...

>

> Hi there,

>

> I just joined this list last night. But after reading

> through my first

> digest I can see I will have lots of questions!! So I

> decided I best just

> introduce myself and get it over with...

>

> My name is Kimberle' (that's pronounced Kimber-lay) Garwood,

> I am 34 and had

> the original onset of my diseases between the ages of 29-30.

> I am married to

> a very supportive man and have two teenage children,

> Kristopher, 16, and

> Ashli, 14. I have been living in North Carolina for 14

> months now, moved

> from WV. I am originally from Missouri and lived many years

> in St. Louis as

> a kid.

>

> At the onset of my symptoms I had overwhelming GI upsets so

> I had many many

> tests that resulted in no answers. IBD I was told. My PCP

> told me I was just

> depressed and stressed out-I was, after all, female, turning

> 30, mother of

> two fledgling teenagers and getting married-and here is a

> Prozac Rx.

>

> Things continued to worsen on a gradual basis until May

> 1997. Dave and I

> were married on the 24th and during the week of our

> honeymoon I was hit hard

> and nasty by this as yet undiagnosed illness. We returned

> home and over the

> course of the next 3 months I got to a point where I could

> no longer work on

> a steady basis and was taking FMLA time off work. I did not

> return to work

> after the end of August. By November I was almost completely

> bedridden,

> getting up to pee, throw-up etc were the only times I

> managed to make it

> from bed. The company I worked for was putting extreme

> pressure on me to

> return to work-but I could not.

>

> My life seemed to have fallen apart. I was the typical type

> A personality. I

> was an amateur body builder, ate all the right foods, did

> all the right

> things. I was a busy supermom, super girlfriend, super

> employee. Nothing

> held me down, nothing stopped me for long. I was too strong.

> That had all

> changed-I was useless lying around with unclean hair and

> muscles I could no

> longer move because they hurt too much. Clothes I could not

> wear because it

> was painful for me to just feel them. I was in danger of

> losing my job and

> therefore half my family's income. I was so depressed and by

> the end of

> November 1997 had gone several weeks without sleep. It seems

> so obsurd that

> a person can be that tired and not be able to go asleep...

>

> I needed sleep so bad, it obsessed my every waking minute. I

> craved it,

> fantasized about it, cried for it, prayed for it. The

> doctor's kept telling

> me there was nothing physically wrong with me that it was

> all in my head, I

> knew that this body I was living in had in some way

> malfunctioned but I

> could not convince anyone in the medical profession. I had

> finally had

> enough-I was a liability to my family and wanted to sleep so

> badly.

>

> I took out all the sleeping pills, anxiety Rx's, pain pills,

> everything I

> had and placed them in front of me. I sat there for a long

> time wondering if

> I could actually go through with it, but continued to write

> notes to

> everyone I loved. Placed the pills in my hand (could I

> really do this I

> wondered, no, I couldn't, it just wouldn't be possible) and

> I put them in my

> mouth and I swallowed. (Did I really swallow those pills? I

> cried. I wanted

> to go to sleep and escape so badly) I wrote the last letter

> to my husband

> trying to explain to him that I loved him and the children

> but I could not

> bare one more minute. That I thought he'd be better without

> me and to make

> sure that the children had cars and their college education

> paid for from my

> life insurance policies. I went to sleep.

>

> I was told I woke up enough on the trip to the hospital to

> tell my husband

> he was driving like and idiot and was going to kill us. I

> don't remember. I

> do have a dream like recollection of being tubed and having

> charcoal put

> down my throat. But I didn't care, I was asleep...I vaguely

> remember waking

> up once in the emergency room to see my husband standing

> over me and someone

> telling him that I wasn't out of the woods yet that they

> were concerned

> about my heart and other vital organs.

>

> I woke up the next day in the ICU. I felt good. I know this

> sounds insane

> but I had slept for 18 hours and had not felt that good in

> months. I was

> told that one of the pill Rxs I had taken was a nasty one

> and could have a

> permanent effect on my heart. So they were monitoring me. My

> husband was

> there by my side. After I got out of ICU I was placed in the

> psych ward for

> a week. Then in an out patient day program. There my

> temperature was

> monitored several times a day. They recorded daily spikes

> and because of

> this I was sent to Cleveland Clinic Foundation to see the

> co-chair of their

> immunology dept. After he reviewed my symptoms and chart he

> immediately

> diagnosed me with CFS. Later I was diagnosed with

> Fibromyalgia too.

>

> It was along time before I was sure I wanted to be alive and

> there are still

> times when I doubt. Life wasn't suppose to be this hard! But

> finally being

> diagnosed and having a medical doctor telling me that what I

> had was legit

> helped my mental state so much. This doctor believes in a

> combination of

> treatments. Partly holistic, partly prescription, partly

> diet/exercise and

> partly spiritual.

> I have come along way since then. I am on permanent

> disability from my job.

> I am not back to normal yet. I have gained 45-50 pounds in

> the past two

> years (partly due to prednisone treatments) but I am not

> bedridden anymore

> and I do have good days. Some periods of time are better

> than others. My

> mental state is up and down but I am not suicidal anymore.

> And YES I was

> depressed, but aren't most people when they are sick?

>

> So, there you have it. My life in black and white. LOL

>

> I would be very interested in learning about this sleep

> phase offset thing

> that was being discussed. I believe this may be one of my

> problems.

>

> Sincerley,

> Kim Garwood

>

> -------------------------------------------------------------

> [

August 27, 2008

,

Hello, I'm also in TX. You have a lot on your plate, huh?! I have

two boys (10 and 12) and feel very lucky they are (maybe) a little

more dependent than your 5 year old. I understand the not sleeping.

I can't seem to get comfortable enough and if I do fall asleep, I

will wake up shortly after. And the stress...like you mentioned!!

Both of these (no sleep and stress) are suppose to effect our

condition yet I can't get over the stress of not working because it

paid my mortgage...but I can't work b/c of the RA. What a cycle we

are in. I wish you the best!! Paris

>

> Hello

> I am from Texas and I am 45. I was diagnosed with RA in Feb

of

> this year after having 17 knee surgeries and one knee replaced in

Sept

> of 07. After more pain in various joints was diagnosed and placed

on

> Methotrexate, did not get any relief and Dr did not want to be more

> aggressive, didn't like her anyway didn't return ophone calls.

> Switched to different Dr in July like better, diagnosed also with

> psoriatic arthritis and ankylosing spondlytis. Started enbrel 2

weeks

> ago hoping for improvement. Have pain in fingers, low back,

shoulders,

> knees, ankles feet and toes at different times and times and to

> different degrees. Can't sleep if I hurt, not sleeping much.

Causing

> fatigue and stress. Also have an immune deficiency that requires

Sub

> Q infusion once a week of immunoglobulin. Money is tight, have two

> kids in college and a 9 and 5 yr old that I homeschool, need to

work

> but can't due to fatigue and pain. Husband doesn't really

understand.

> Thinking of trying to file for disabilty.

>

August 27, 2008

HI CATHY, I LIVE IN CORPUS CHRISTI.TX. I'M 38 YRS.YOUNG & BEEN LIVING WITH RA

FOR 33YRS.NOW. I FEEL SO MANY

EMOTIONS AT ALL TIMES. I TO HAVE PAIN ALL THE TIME, IT HURTS SOO BAD I CAN'T

SLEEP AT ALL.MY HUB

GETS FRUSTRATED SOMETIMES CUZ HE SAYS U ALWAYS HAVE PAIN.. WHAT AM I SUPPOSED TO

DO?

I TELL HIM TRY LIVING IN MY SHOES FOR ONE DAY, I DON'T THINK U COULD SURVIVE!!!

HANG IN THERE AND GOD WILL TAKE CARE OF U.GOD BLESS,MELYNDAGAMEZ 8/27/08

10:15P.M.CENTRAL

[ ] introduction-long

Hello

I am from Texas and I am 45. I was diagnosed with RA in Feb of

this year after having 17 knee surgeries and one knee replaced in Sept

of 07. After more pain in various joints was diagnosed and placed on

Methotrexate, did not get any relief and Dr did not want to be more

aggressive, didn't like her anyway didn't return ophone calls.

Switched to different Dr in July like better, diagnosed also with

psoriatic arthritis and ankylosing spondlytis. Started enbrel 2 weeks

ago hoping for improvement. Have pain in fingers, low back, shoulders,

knees, ankles feet and toes at different times and times and to

different degrees. Can't sleep if I hurt, not sleeping much. Causing

fatigue and stress. Also have an immune deficiency that requires Sub

Q infusion once a week of immunoglobulin. Money is tight, have two

kids in college and a 9 and 5 yr old that I homeschool, need to work

but can't due to fatigue and pain. Husband doesn't really understand.

Thinking of trying to file for disabilty.

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

August 27, 2008

Welcome !!!

This is a great group and one big family. Glad you're here. I'm also in Texas.

--

Dodge

From acquaintances we conceal our real selves.

To our friends we reveal our weaknesses.

--Basil Hume

Read my blog at:

http://jumpthis.wordpress.com

---- johnnytommy2000 <cjfrancis4boys@...> wrote:

=============