Re: Has anyone found anything helpful for sleep?

[Guest guest]

One class of sleep problems in CFIDS is connected to hypoxia (lack of

oxygen delivery to tissues). Sleeplessness is one of the

characteristics of altitude sickness.

Appropriate anticoagulants a few hours before bed can often do the

trick, as well as flushing niacin - 2-3 hrs before bed time. Which

one's is appropriate depends on your coagulation profile... if you do

not know, I would suggest trying (on different nights) the following as

probes:

* 2 aspirins

* 2 piracetam

* Red-Rice Yeast with CoQ10

* Nattokinease

* Serrapetase

* Bromelain

* Lumbrokinease

and see which one(s) improve the ability to get to sleep

>

> I would appreciate any help this group can offer. Thank you!

> Sue

>

[Guest guest]

EPO is an anticoagulant -- but also a two edge sword... it decreases

one form of coagulation and improves another form. I usually

recommend ALA instead -- since it decreases the same form of

coagulation but does not increase the other form. I had forgotten to

include those two on my quick list from before.

I'm glad to hear that for you the rests are what would be expected

by the model.

And as my wife just pointed out to me --- we are in an interesting

area here, ALA etc are all known anti-coagulants and thus not NEW

treatments.... so I could get my fingers slapped by her. On the flip

side, there's are no studies that I am aware of that deals with the

use of anticoagulants for CFIDS sleep issues... so it would appear

to be appropriate --- it was in that sense that I posted...

>

> Ken

> I know that Bromelain helps me to go to sleep also does evening

primrose

> oil.Is EPO anticoagulant?

> thanks

> Nil

> Re: Has anyone found anything helpful

for

> sleep?

>

>

> >> probes:

> > * 2 aspirins

> > * 2 piracetam

> > * Red-Rice Yeast with CoQ10

> > * Nattokinease

> > * Serrapetase

> > * Bromelain

> > * Lumbrokinease

> > and see which one(s) improve the ability to get to sleep

> >

> >

> > ---

>

[Guest guest]

Hello Sue,

My major symptom with ME is absolutley no sleep... I have been

prescribed all the antidepressents invented with limited success (and

debilitating side effects), I have also been prescribed off label

hard

core anti psychotic drugs that almost killed me...I was labelled as a

psych case for 8 years and that was very difficult to deal with.

While I was suffering and taking nortriptoline and alprazolam, I

talked with a Doctor who had

recently lost his new born and was really struggling emotionally, he

prescribed a

benzodiazapine type drug called Cloneazopam... wow what a difference

it

made for me. I take 2 (two) .5 milligram pills at bedtime annd then

take another 1 or 2 when I wake up at 3am... if I do not take them I

lay awake wired and tired and can hardly function the next day.

Alprazolam did not work nearly as well. I know that this may not work

for you but am compelled to tell you of my journey. God Bless you and

I

will pray for you and releif from your lack of sleep. I know how you

feel. Don't let the doctors tell you it is all in your head.

I think that anti biotics and Hyperbarric Oxygen Therapy are the only

cure for ME/ CFS/ FM... I am dealing with my HMO who have initially

denied me HBOT, but will do it even if I have to pay myself.

Read this:

Re: Living with ME 19 March 2005

Gillian E Duguid,

Re: Re: Living with ME

I became chronically ill in May 2001 with what felt like something

tightening my tissues as it travelled through my body. It had started

in the right side of my throat and gone progressively down the right

side of my body. I had a severe bout of constipation as part of this

picture and at that time experienced a surge of pressure up my spine

and into the base of my skull. It resulted in my spinal muscles

becoming stuck and a feeling that my brain was swelling. I also

started

to develop some very strange symptoms which included muscle

twitching,

odd tingling, numbness, heart flutters and squeezing sensations in my

chest, being jerked awake at night when sleeping on my back,

breathing

problems, stiffness in hands and feet; a definite feeling that

something had invaded my body and brain. (Prior to becoming ill I'd

had

a funny dry feeling in my throat for several years that was never

diagnosed as being anything of significance. I now believe whatever

was

there exploded into a body-wide condition under the stress of my

father's death.)

For the next year I relentlessly visited doctors, specialists and

physical therapists in an attempt to find out what was wrong with me

and treat the symptoms. All tests being done came back negative and I

was beginning to be labelled as a psychiatric case, especially when I

recounted how my illness had progressed. As soon as I mentioned that

something was in my tissues their faces would glaze over and I would

be

prescribed antidepressants. This situation lasted for 3 years with me

getting sicker and sicker. The only evidence in my bloodwork was that

my neutrophils and white cells were consistently up. Doctors

dismissed

this as being due to a cold or stress.

By October 2003 I was not in a good place at all and had a myriad of

symptoms which had forced me to give up work. I was now experiencing

severe brain fog, scary breathing problems, intermittent numbness in

my

legs, severe mucle constriction in my back and had also two seizure -

like episodes. I was getting very frightened as I was being told it

was

all in my head with no hope of anyone being able to help me..

Through my own research on the Net I concluded that I must have a

chronic illness such as fibromyalgia, ME/CFS, or MS with arthritic

symptoms too. My tests, bar the raised neutrophils and white cells,

were still negative. I had seen neurologists and rheumatologists, had

lung x-rays, MRIs and countless blood tests. The closest I got to a

diagnosis was from a rheumatologist who said it was probably a

fibromyalgia-like syndrome.

Fortunately I came across a place in Melbourne (Australia) where they

offered hyperbaric oxygen to treat neurovascular conditions and

chronic

illness such as ME/CFS, (which they believe are caused by

intracellular

infections). I made an appointment and was so excited and relieved to

speak to people who understood what I was going through. The GP there

concluded that I must be fighting something with my raised

neutrophils

and white cells being raised for so long so they ran a battery of

tests

no other doctors had run and found evidence of past infections of

rickettsia; chlamydia penumonia and herpes. I was put on doxyxycline

and started hyperbaric oxygen (HBO). Immediately I started to feel

better. My neck muscles started to soften, my breathing started to

get

better and my nervous system symptoms started to abate. What a

relief.

To cut a long story short I am still receiving HBO and am still on

antibiotics and am doing so much better. At first I was put on daily

dosing with combination antibiotics and weekly HBO; a year of this

treatment allowed me to get well enough to return to part time work.

Now my antibiotics are being pulse dosed 3 times a week and I still

go

to weekly HBO sessions. My therapy is now more in line with Dr

Brown's

antibiotic protocoI for arthritis. I do believe I will eventually get

rid of all my symptoms but accept it is probably going to take a good

bit of time yet. I look so much better now and am able to look after

myself again. I am getting my life back.

I suggest the following websites as a good initial source of

information on treatment that might help. Finding doctors willing to

treat in this manner is probably one of the most difficult things but

they are out there. While my experiece with the medical profession

has

been primarily in Australia, I was in the UK for 6 months last year

and

found HBO easy to get through the MS charity centres and can supply

names of 2 doctors willing to prescribe long-term antibiotics for

these

chronic illness states.

www.roadback.org

www.spinalreahab.com.au

If anyone wants to converse with me direclty I can be contacted via

email on geduguid@...

Your brother in Christ,

Kent MacLaughlin

mac@...

>

> I would appreciate any help this group can offer. Thank you!

> Sue

>