Mike

[Guest guest]

Things are slowly getting down a little better. Still not great, but better is a good sign. He did a partial wrap. It's only been 4 days, so I guess I may be being a bit impatient. Hopefully things will continue to progress for the better. Thanks,

Mike

[Guest guest]

Hi, Mike,

Thanks for the explanations on the Freedom programs. Although I know

your thinking is warped (giggling) it works for me in this case! LOL My audi

has explained " adro " to me several times and I still couldn't grasp it. Your

easy explanation has done the trick and cemented it in my mind. I have 2 open

programs on my Freedom and one with beam and one with adro. I don't have the

whisper or auto-sens, as I don't think I'd use them much, judging by how I've

used my 3G. Anyway - thanks for being such a wonderful presence here on the

forum and giving so much of your time for all of us.

) Jackie (Flash)

[Guest guest]

Mike, is there some way you can resend that explanation to me, I couldn't

bring the last one you sent me in. Maybe if you copy and paste and send it

directly to my e-mail it might work. patsy

[Guest guest]

Hi cathy I am scared of the next unavoidale step as my surgeon discrcibed it.My doc wants me to go in to have a cleanout of my throat.But the chances of a perferation are always present.and if so they do a ectomy,I am getting more symptoms now,heart burn (NEXIUM) isnt working that well anymore.heavyness in my chest,regurdating fluid,ect,ect. the last operation was hell and a ectomy is much more of a proceedure.how do we live after it is removed?My surgeon says it will be constucted out of my stomach,can anyone tell me if there is any normalcy of life after the removal? is there a seperate group for we who are involved with ectomy?I have so many more questons. thank you so much for advising me. mike from cape cod Jo Blauer <capmyjo@...> wrote: Hi Mike I know you said you planned on staying the way

you are for the present, but please consider sharing information with the board members in the "ectomy group". There are those who have already had the procedure (, , Jan) and those contemplating the next course of treatment (, , Mike, Steve). I know I am forgetting many, but my point is that by sharing our experiences at all levels, we are able to gain knowledge and strength to deal with this disease. Jo

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Hi Pam,

Good to hear from you & thanks for contacting me. I'm a little confused

about what you mean by " going nuts " -- that could mean two different

things.

During the trial it took me about 4 weeks to truly reap the benefits of the

harmony and new processing strategies. Feel free to contact me privately so

we can chat more in-depth and not bore the others with details. I'd love to

hear more about your experiences!

Best,

Mike Royer

Advanced Bionics CI

[Guest guest]

hi Mike... by the way, what do you say when people ask " what is Scleroderma " ?

having people not know what it is must be frustrating .

I find people also don't know what RA is and how it affects a person. I wish

someone would give it another name, since when most people think arthritis, and

they think old people with a few stiff joints etc. as you know, what we've got

is so much more, yet some people judge us lazy or hypochondriacs.

best of luck with your new book... it will help a great deal of people.

all the best,

Leonie

Re: rheumatic Gwen's story

Wow! Thank you for forwarding Gwen's letter. This makes it all

worthwhile.

Tell Gwen to continue to stay in touch as we would love to keep hearing about

her progress. I don't know if you know, but I am in the midst of writing a book

of stories

written by the patients to everybody. Most books are written by professionals,

but none are written by us who are afflicted, fighting and coping. Some of us

are able to rise above the pain, disappointments and struggle to help others. My

beef is that whenever Mike and I wear our Scleroderma hats or backpacks, people

ask us, " What is Scleroderma? "

We are desperately working to put an end to that question and bring about

awareness, so

that no one will ever ask again, what is?----------to any of our Th 1

diseases. I also got sick in 2004, but it was the end of 2005 before I was

diagnosed. I learned about the " Infectious Theory " and the Antibiotic Protocol

from people who post on this site and from the RBF. By January 2006, I was on

Minocin. I, too was bedridden for 8 months and went into remission in May 2007.

Started doing research and still learning. I am a writer. Not well known, but

have been awarded for my poetry. Decided on the book and may keep on writing

till the whole world knows what we are up against. If Gwen would like, I would

like to put her story into my book, just the way she wrote it. The proceeds from

the book after expenses will be delegated to research. I want someone to find a

cure. That is my prayer for 2008

These stories are uplifting and educational and hopefully life saving. Thank

you, Dolores & Mike

Adlard <cadlard@...> wrote:

Hi all,

Gwen has sent us her story which I've just put on our website at

rheumatic.org. Thankyou very much Gwen and I'm very glad to hear how

much better your life is now.

Chris.

___________________________________________

GWEN, Polymyalgia Rheumatica/Giant Cell Arteritis

My life has been one of constant pain throughout my body as I have a

history of multiple chronic illnesses - Raynaud's, Osteoarthritis plus

a mild case of rheumatoid arthritis, but in late 2004 my life took a

turn for the worse. I was so ill, and in so much pain throughout my

body I could not even get out of bed. I had seen many doctors and had

numerous tests. Blood test results revealed CRP and ESR high and FBC

low.

In January 2005, I developed a huge lump on my temple so went back to

the doctor again to see what this could be. He thought I had hit my

head in my sleep, but in the next few days the lump grew bigger so I

went back to the doctor again. Alarm bells were starting to ring for

him and he sent me for more tests. The doctor rang me the next day and

told me to pack a bag and go directly to the eye hospital, as he had

finally found out what was wrong with me. I had Polymyalgia Rheumatica,

plus the secondary complication of Giant Cell Arteritis because they

did not diagnose the PR early enough.

They operated on my head the next day and confirmed I had GCA -

proceeding then to fill me full of drugs. My doctor could not stop

telling me how sorry he was - he thought I was too young to have PR (58

years) - only people in their 70s get this disease. I had to retire

from work after 18 years - too ill to continue.

I was sent to the Rheumy, put on toxic drugs including 65 mg. of

prednisone, weekly injections of methotrexate, plus Mobic. I was so ill

at one stage I didn't care if I lived or died. There was improvement

from the drugs in the beginning, but the side effects were horrendous.

I got high blood pressure, high cholesterol, and worst of all - steroid

induced diabetes. My life was a mess.

In 2006, I decided to search the internet to see if anyone could help

me as I was under 5 different doctors and getting nowhere. I knew I had

to do something or I was going to end my life in misery. I came across

this wonderful support group (www.rheumatic.org) that saved my life.

Just being able to send emails back and forth, knowing you are not

alone in this fight, was a big help to me.

Now the fun started trying to convince the rheumy to give me the

antibiotic protocol. I took all my print outs about members' success

stories, but she would not even read them. She said there was no proof

this worked in her journals - head in the sand attitude. So back I went

to the GP and put my case to her. She said if I could get another

doctor to support me she would give me Minocin.

So I went to my orthopaedic surgeon who looks after my knees and hips.

Well, he was very supportive when he read the notes saying it made

sense to him as often when he is operating on patients he has made the

comment to other doctors that the inflammation he was seeing in the

joints looked more like infection, so he agreed to write my GP a letter

of support for the AP.

Back to the GP I went and she gave me a script for Minocin - asking me

to sign a disclaimer which I was willing to do - getting me started on

the road back from hell. My dose to start was 200 mg. per day for about

four months. When the pain started to improve, I gave up the steroids*

and methotrexate, and went to 100 mg per day for another three months

until I reached remission. Now I take 100 mg. three times a week to

keep me in remission.

I am living proof this treatment works. Even my Raynaud's is in

remission. All of my doctors (except the rheumy which I gave the sack

to) cannot believe the change in me, and now believe the treatment

works and are giving it to their other patients.

I owe a lot of thanks to the group - especially Harold, Mike, Ethel,

Delores and other members who told their stories to help people like

me. If you would like to know more about my treatment please feel free

to email me.

Regards, Gwen

*Patients on steroids should not stop them abruptly, but wean off of

them slowly under the guidance of their physician.

You can reach me at gmartin4@...

[Guest guest]

Hi Sue, Leoni and the rest. You asked what Mike and I tell people what

scleroderma is when asked. We have these little cards that the S/D foundation

have made. I try to memorize everything it says and then tell it as briefly but

concisely as I can in myown words and add that I am in remission after being on

my death bed for 8 months. I tell them it is terminal. Most people just look

at me sort of baffled. Yes, when I tell people I have R/A, they say " Oh! I have

arthritis too. It hurts me right here when it rains. I want to barf. They

just don't get it. They think it's just an old person's disease that everybody

will get eventually. That's why I'm writing the book. It is a compilation of

short stories by people like us. Let me introduce myself officially. I am

Dolores married to Mike for 32 years. I have Scleroderma, R/A and MCTD. Mike,

has anticardiolipin antibodies and antiphospholipin antibodies (together they

are precursers of the Lupus anticoagulant)

which means although he carries the propensity to develop Lupus, he hasn't yet.

This condition was found when they removed his spleen in 1991, and tore his

pancreas from a misdiagnosis. They did not anticoagulate him post -op and he

suffered two strokes and had his foot amputated from a blood clot that clogged

his femeral vein and two in his brain. He was in the hospital for 10 months.

They never expected him to recover. He did. Then I came down with my diseases.

Not only have we both survived, but it made us stronger and now we are patient

advocates, volunteers and on the committee for the scleroderma annual walkathon.

I am also a writer. Have received awards for my published poetry. But have

never written a book or put one together before. The idea came from the people

telling me their stories. I just felt these stories are so powerful that they

should be put into a book and distributed to the world. The word is getting out

and now I have people from all

over the world asking me when is the book coming. They want to order it. One

lady from California asked me for the manual for scleroderma. I decided to

write one. I am and have been doing research for two years and have amassed

much information. Lynne has provided me with published materials. I've learned

so much and have so much more to learn. When I finish this book, I will start

on another one. I will not stop until the word has gone around the world. All

the stories are from women. We outnumber the men. I want to even the book out

with some men's stories or stories from men who had to become caregivers. If

you know of any, please tell them there are other men out there with these

diseases who want to hear from them. The ladies who have sent me their stories

have told me that they found the experience putting their stories on paper to be

very cathartic. There are far too many people who keep these diseases secret

because they are made to feel like they are

hypochondriacs. I had a doctor tell me when she couldn't find anything wrong

with me, yet I was losing weight and writhing in pain, to make an appointment

with the mental health clinic. If women are told this, can you imagine how

helpless the men must feel. So, ladies if you can, help me get this word out.

Thank you, Dolores & Mike

Sue Emrick <semrick@...> wrote: Amen to that Leonie, I find in

addition to everything else I have to deal with (RA) it is an additional

frustration to have the people around me think that this is no big deal and I

should " just put some Ben Gay on it " . Why oh why is this awful, debilitating

disease taken so lightly?

Sue

Re: rheumatic Gwen's story

Wow! Thank you for forwarding Gwen's letter. This makes it all worthwhile.

Tell Gwen to continue to stay in touch as we would love to keep hearing about

her progress. I don't know if you know, but I am in the midst of writing a book

of stories

written by the patients to everybody. Most books are written by professionals,

but none are written by us who are afflicted, fighting and coping. Some of us

are able to rise above the pain, disappointments and struggle to help others. My

beef is that whenever Mike and I wear our Scleroderma hats or backpacks, people

ask us, " What is Scleroderma? "

We are desperately working to put an end to that question and bring about

awareness, so

that no one will ever ask again, what is?----------to any of our Th 1 diseases.

I also got sick in 2004, but it was the end of 2005 before I was diagnosed. I

learned about the " Infectious Theory " and the Antibiotic Protocol from people

who post on this site and from the RBF. By January 2006, I was on Minocin. I,

too was bedridden for 8 months and went into remission in May 2007. Started

doing research and still learning. I am a writer. Not well known, but have been

awarded for my poetry. Decided on the book and may keep on writing till the

whole world knows what we are up against. If Gwen would like, I would like to

put her story into my book, just the way she wrote it. The proceeds from the

book after expenses will be delegated to research. I want someone to find a

cure. That is my prayer for 2008

These stories are uplifting and educational and hopefully life saving. Thank

you, Dolores & Mike

Adlard <cadlard@...> wrote:

Hi all,

Gwen has sent us her story which I've just put on our website at

rheumatic.org. Thankyou very much Gwen and I'm very glad to hear how

much better your life is now.

Chris.

___________________________________________

GWEN, Polymyalgia Rheumatica/Giant Cell Arteritis

My life has been one of constant pain throughout my body as I have a

history of multiple chronic illnesses - Raynaud's, Osteoarthritis plus

a mild case of rheumatoid arthritis, but in late 2004 my life took a

turn for the worse. I was so ill, and in so much pain throughout my

body I could not even get out of bed. I had seen many doctors and had

numerous tests. Blood test results revealed CRP and ESR high and FBC

low.

In January 2005, I developed a huge lump on my temple so went back to

the doctor again to see what this could be. He thought I had hit my

head in my sleep, but in the next few days the lump grew bigger so I

went back to the doctor again. Alarm bells were starting to ring for

him and he sent me for more tests. The doctor rang me the next day and

told me to pack a bag and go directly to the eye hospital, as he had

finally found out what was wrong with me. I had Polymyalgia Rheumatica,

plus the secondary complication of Giant Cell Arteritis because they

did not diagnose the PR early enough.

They operated on my head the next day and confirmed I had GCA -

proceeding then to fill me full of drugs. My doctor could not stop

telling me how sorry he was - he thought I was too young to have PR (58

years) - only people in their 70s get this disease. I had to retire

from work after 18 years - too ill to continue.

I was sent to the Rheumy, put on toxic drugs including 65 mg. of

prednisone, weekly injections of methotrexate, plus Mobic. I was so ill

at one stage I didn't care if I lived or died. There was improvement

from the drugs in the beginning, but the side effects were horrendous.

I got high blood pressure, high cholesterol, and worst of all - steroid

induced diabetes. My life was a mess.

In 2006, I decided to search the internet to see if anyone could help

me as I was under 5 different doctors and getting nowhere. I knew I had

to do something or I was going to end my life in misery. I came across

this wonderful support group (www.rheumatic.org) that saved my life.

Just being able to send emails back and forth, knowing you are not

alone in this fight, was a big help to me.

Now the fun started trying to convince the rheumy to give me the

antibiotic protocol. I took all my print outs about members' success

stories, but she would not even read them. She said there was no proof

this worked in her journals - head in the sand attitude. So back I went

to the GP and put my case to her. She said if I could get another

doctor to support me she would give me Minocin.

So I went to my orthopaedic surgeon who looks after my knees and hips.

Well, he was very supportive when he read the notes saying it made

sense to him as often when he is operating on patients he has made the

comment to other doctors that the inflammation he was seeing in the

joints looked more like infection, so he agreed to write my GP a letter

of support for the AP.

Back to the GP I went and she gave me a script for Minocin - asking me

to sign a disclaimer which I was willing to do - getting me started on

the road back from hell. My dose to start was 200 mg. per day for about

four months. When the pain started to improve, I gave up the steroids*

and methotrexate, and went to 100 mg per day for another three months

until I reached remission. Now I take 100 mg. three times a week to

keep me in remission.

I am living proof this treatment works. Even my Raynaud's is in

remission. All of my doctors (except the rheumy which I gave the sack

to) cannot believe the change in me, and now believe the treatment

works and are giving it to their other patients.

I owe a lot of thanks to the group - especially Harold, Mike, Ethel,

Delores and other members who told their stories to help people like

me. If you would like to know more about my treatment please feel free

to email me.

Regards, Gwen

*Patients on steroids should not stop them abruptly, but wean off of

them slowly under the guidance of their physician.

You can reach me at gmartin4@...

[Guest guest]

Mike

 Thank you so much for all the support... Im sorry that I havent been active in

the group... I will be again after next Monday... Hope you are feeling well... I

do miss you all.... thanks agian Mike

                       soft hugs

                               T

 lisa

From: Mike <mike2boys@...>

Subject: Re: lisa

Stimulator

Date: Tuesday, September 30, 2008, 2:45 PM

I happy your getting a new apartment things look good on your

end. I am glad evrythings going good I am always here if you need me.

mike group owner

>

> From: KGAVI@... <KGAVI@...>

> Subject: Re: lisa

> Stimulator@gro ups.com

> Date: Sunday, September 21, 2008, 9:35 PM

>

>

>

>

>

>

> Hey !!

>

> I am so happy you are not staying with that horrible man who

treated you so

> badly. You are such a beautiful person and deserve to be treated as

such!!

> I am so proud of you, !!

>

> thanks for your cell number. I hope you are getring this mail that

I am

> sending to you and am sorry that you ddin't get my other one. My

cell number is

> (215) 783-9066. I will not give your cell number to anyone in the

group,

> and ask you to do the same for me.

>

> You remain in my thoughts, prayers and heart.

>

> Hang in and keep up the wonderful work, !!

>

> Love

>

> Kathy

>

> ************ **Looking for simple solutions to your real-life

financial

> challenges? Check out WalletPop for the latest news and

information, tips and

> calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000

0001)

>

>

[Guest guest]

Mike,

 

What hormone replacement do you use and, with all your research, do you think

Synthyoid  has any value?

 

Pamela

From: Mike Lawson <mlawson66@...>

Subject: Re: what kind of work does everyone do?

hypothyroidism

Date: Saturday, October 11, 2008, 8:14 AM

I've lost the original post so I'll reply to this.

I am a database jockey and system administrator. I design,

implement & tune UNIX based Oracle database systems. I

am also a data architect and software developer. The only

way I could keep up with everything before I started thyroid

treatment was to all but drown myself in coffee. I've been

caffeine free (except for an occasional cup of coffee after

working all night) for a couple months now. The work

schedule is 50-120 hours in a week with occasional all

nighters. I'm doing very well in my position, even though

I get grumpy with excessive over nighters.

My reading habits have shifted from fanciful fiction

to medical books and hard science text books. I'm actually

working out of the books that doctors use to study for

their board reviews now. It's like the lights are starting to

come back on.

-Mike :-)

[Guest guest]

Hi Pamela,

I tried levothyroxine for a month or so when I first started out. It

didn't do much for me, but I've since then learned that it takes about

6 weeks for the body to adjust to any changes in dose level for that

product. I may not have given it enough time. I just had the worst

case of tendonitis that I've ever had while taking it. It may have

been coincidence, but I still blamed it on the levo. Oh, and it actually

made me hungrier than normal. Armour had just the opposite

effect. Now I've adjusted to it and my appetite has returned to normal,

but I am still losing weight while eating a healthy diet.

All of the medical texts including the CMDT (Current Medical Diagnosis

& Treatment) Manual suggest levothyroxine as the preferred treatment

because the dose is more uniform, but I don't buy it. Manufacturing

processes to synthesize chemicals can be patented, and it is probably

a more profitable product than Armour thyroid. There is a synthetic

product that holds a lot of promise made by Forest Pharmaceuticals,

the same folks that make Armour. That is Thyrolar. It is a mix of

T3 & T4 at a ratio of 1:4. Armour is 1:4.22. It doesn't have calcitonin

or T2 & T1, but it doesn't rely on the bodies capacity to convert T4

to T3 as heavily as a pure T4 product. It certainly looks promising.

You might ask your doctor about it if you are not responding well

to a T4 only product. Of course, there is Armour, the old standby.

I am doing very well on it and it is readily available. My doctor

prescribed Armour for me, but some times she is slow in making

dose changes, and she prescribes 1 large dose pill. I do better

taking it throughout the day. It helps to eliminate the afternoon

dip in my energy level.

So, in summary, if levothyroxine works for you, it has value. Most

thyroid patients are on it. For people that don't respond well to

it, Armour or Thyrolar would be better choices. Of course, any

thyroid treatment should be done with proper medical supervision.

I have a friend that is very sick now from self medicating, and

over dosing herself. If you do choose to self treat, follow up

with labs because it may be hard to be objective about how you

feel. Some makes me feel good, so more will make me feel better,

right? Not always...

Good health!

-Mike :-)

[Guest guest]

Oh, I forgot to mention. All of the hormones are important

to one's well being. After you get your thyroid and adrenals

sorted out, it would be a good idea to check out your sex

hormones. They do a lot more for you than just maintain

your sex life. Estradiol at the right level helps to maintain

healthy bones & nervous system. Testosterone helps to

maintain muscle strength, even in smooth muscles and

heart. Everybody needs an appropriate balance of all

of these for good health and longevity.

I have a damaged pituitary gland so I am on thyroid

and testosterone replacement. My GH and IGF-1 levels

are below reference range so I'm working on getting

insurance to pay for that. In the mean time, I'm taking

lots of arginine, ornithine, glutamine and niacin. It

helps, but not much. I keep up with this regimen

because it is also good for the circulatory system

and helps to raise HDL, particularly niacin. I also have

to be very careful about carbs & sugars. I don't make

as much insulin as most people and I don't want to

wind up getting branded as a diabetic.

Last year my total cholesterol was near 300 and

my triglycerides were over 300. My total cholesterol

is 112 now and my triglycerides are 134. Now I actually

have to go out of my way to get enough fat in my

diet.

If anyone is interested, I can dig up some references.

I'm just a little pressed for time now.

-MIke :-)

>

> Mike,

>  

> What hormone replacement do you use and, with all your research, do you think

Synthyoid  has any value?

>  

> Pamela

>

[Guest guest]

Mike,

Oh no....when did you find out your pitutitary gland was damaged?

How was that diagnosed? Did you have a brain scan?

I am really sorry to hear about this ‹ will you need surgery or will meds

³fix² that?

sue

On 10/11/08 8:02 PM, " Mike Lawson " <mlawson66@...> wrote:

>

>

> I have a damaged pituitary gland so I am on thyroid

> and testosterone replacement. My GH and IGF-1 levels

> are below reference range so I'm working on getting

> insurance to pay for that. In the mean time, I'm taking

> lots of arginine, ornithine, glutamine and niacin. It

> helps, but not much. I keep up with this regimen

> because it is also good for the circulatory system

> and helps to raise HDL, particularly niacin. I also have

> to be very careful about carbs & sugars. I don't make

> as much insulin as most people and I don't want to

> wind up getting branded as a diabetic.

>

[Guest guest]

We've suspected it from the beginning since all of my

hormone levels were low except for cortisol. The thing

is, they are below reference range, but not far enough

for insurance to pay for an MRI. We have to go through

all of these other tests first. I hate my insurance company.

For now, I'm just replacing thyroid and testosterone, and

being careful about carbs & sugar. I may have to go on

metformin before long. The fasting sugar levels are still

within range, but at the very top of the range. The same

with Hemoglobin A1C. I'm probably going to get a test

kit and monitor it a little more closely, and self treat if

I have to. I just don't want the insurance company to

brand me as diabetic because that will drastically alter

the course of treatment that they will pay for.

At least the lipid levels are better now. Still need to get

that HDL up, and eat a little more fat. I'm told that

people with total cholesterol as low as mine are prone

to depression and suicide. It has dropped by almost

200 points since going off of the beta blocker BP

med and going on Armour. The triglycerides have

dropped by 200 points.

Anyway, after I've jumped through some more hoops

and have a bunch more tests, they will authorize an MRI.

Last night I had a sleep study. They would rather pay

for a C-PAP machine than an MRI. I'm sure that they

will say that I have sleep apnea. My PCP says that almost

everyone that is tested comes back with sleep apnea to

some degree. Anyway, I'll have to get retested after

a month or so of PAP therapy. If the levels are still

low, they will authorize an MRI. This is so very

frustrating. I've got a bad knee and 2 bad ankles from

motocross, a car wreck and a farming accident where

I was run over by a plow. They had no problem at all

authorizing an MRI for that stuff. I'm paying for Armour

and TRT out of my own pocket, but it is not very expensive.

Thanks to abuse by the sports community and the rich

and vain, hormone replacement therapies, especially

hGH, TRT and T3 have to be documented thoroughly,

and docs that prescribe these come under a lot of

scrutiny.

I still don't know exactly what caused the pituitary

problem. I've got a family history of it and I've had

more than one concussion. Lots of face plants back

in the motocross and rodeo days. I used to break

horses so I've been thrown too many times to count,

and I've been through 5 or 6 bad car wrecks. I'm

lucky that I've come out of all of that with a few

broken bones and concussions. I was sure that

I wouldn't live past 30, now that I'm almost 45, I'm

beginning to regret some of my misspent youth.

> >

> >

> > I have a damaged pituitary gland so I am on thyroid

> > and testosterone replacement. My GH and IGF-1 levels

> > are below reference range so I'm working on getting

> > insurance to pay for that. In the mean time, I'm taking

> > lots of arginine, ornithine, glutamine and niacin. It

> > helps, but not much. I keep up with this regimen

> > because it is also good for the circulatory system

> > and helps to raise HDL, particularly niacin. I also have

> > to be very careful about carbs & sugars. I don't make

> > as much insulin as most people and I don't want to

> > wind up getting branded as a diabetic.

> >

>

>

>

>

[Guest guest]

Mike,

You wrote:

> ...My PCP says that almost

> everyone that is tested comes back with sleep apnea to

> some degree....

I have heard that is true if the neck size is greater than 18 inches.

Chuck

[Guest guest]

Hi Chuck,

Interesting. I'm one of those guys with no neck. At least that's

what it looks like. I used to lift weights a lot, and still do to

some degree so I've got about a 20.5 inch neck and a 54 inch

chest. I'm screwed... Maybe I should trade weight lifting for

yoga. I just want to have enough strength to pick up my

650 lb 1150 GS -Adventure bike if I drop it in the dirt.

Thanks,

-Mike

> > ...My PCP says that almost

> > everyone that is tested comes back with sleep apnea to

> > some degree....

>

> I have heard that is true if the neck size is greater than 18 inches.

>

> Chuck

>

[Guest guest]

Hi Mike,

Boy you are going through A LOT!~

If your symptoms and blood levels warrant it I can¹t see them not doing an

MRI ­ that¹s usually the first thing after blood work it seems these days.

Our insurance company pays for them no questions asked it seems. My husband

is having one cuz he¹s been having memory problems ‹ sure, the guy sleeps

like 5 hours a night but still they said, Œlet rule out brain problems.²

we¹ll take it...

My husband had the sleep study done also ‹ he snores, wakes up snorting,

etc, and they said he had NO sleep apnea so hopefully your PCP is wrong...

I guess your symtoms are more indicative of sleep apnea ‹ thus the sleep

study,CPAP vs an MRI?

How WEIRD... Sorry to hear that.

So you don¹t have an actual diagnosis of a damaged pituitary ­

I know you and I have discussed this one one one, and by you

saying yours is damaged, that would mean that horrid surgery we talked of...

But that¹s not the case, right?

I feel for you Mike, and I hope you get this figured out and can improve the

quality of your life.

I am 50 and still don¹t regret my ³mispent youth² -- I am a hellofa pool

player and spades player

Sue

On 10/11/08 10:11 PM, " Mike Lawson " <mlawson66@...> wrote:

>

>

>

> We've suspected it from the beginning since all of my

> hormone levels were low except for cortisol. The thing

> is, they are below reference range, but not far enough

> for insurance to pay for an MRI. We have to go through

> all of these other tests first. I hate my insurance company.

>

> \

>

>

[Guest guest]

That would explain it, Chuck ­ my husband does not have a wide neck and he

did not come back with sleep apena. It is related to body mass/size from

what I have read, seen and heard for many cases.

sue

On 10/12/08 9:00 AM, " Chuck B " <gumboyaya@...> wrote:

>

>

>

> Mike,

>

> You wrote:

>> > ...My PCP says that almost

>> > everyone that is tested comes back with sleep apnea to

>> > some degree....

>

> I have heard that is true if the neck size is greater than 18 inches.

>

> Chuck

>

[Guest guest]

The doc says it looks like a pituitary problem but we have

to rule out all of this other stuff first. I have really crappy

insurance these days so we have to do it their way or they

won't pay. My levels were all below reference range, by 50%

or so. If they had been 90% below range, it would have

been a no brainer. The other thing that is frustrating

about this is it isn't consistent. The doc though I had

hashi's at first because I bounced around from low energy

to no energy, but they've ruled all of that out. Now it is

just the sleep apnea hurdle to get through. I do have

a family history of pituitary problems so I don't know

what their problem is...

Yeah, sleep apnea is the big fad these days. I'll give it

a try, but I won't believe that it is the great cure all

until I see it backed up by lab results...

Well, we are off to take some pictures.

Have a good day all!

-Mike

>

> >

> >

> >

> > We've suspected it from the beginning since all of my

> > hormone levels were low except for cortisol. The thing

> > is, they are below reference range, but not far enough

> > for insurance to pay for an MRI. We have to go through

> > all of these other tests first. I hate my insurance company.

> >

> > \

> >

> >

>

>

>

>

>

[Guest guest]

My PCP is skinny as a rail and she has sleep apnea and

apparently PAP therapy has improved her quality of life.

Now everything looks like sleep apnea to her. Ouch, my

appendix hurts. GO GET A SLEEP STUDY! Sheesh, what

next...

> >> > ...My PCP says that almost

> >> > everyone that is tested comes back with sleep apnea to

> >> > some degree....

> >

> > I have heard that is true if the neck size is greater than 18 inches.

> >

> > Chuck

> >

>

>

>

>

[Guest guest]

According to Mayo clinic here are top risk factors for having sleep apnea.

So since your PCP is skinny, female without a large neck she unfortunately

inherited a narrow throat or has enlarged tonsils... And may smoke which I

doubt.

If you do have it Mike, the thing is, it CAN be treated and you will soon be

doing a song and dance over having your health greatly improved ­ your

quality of sleep is so important to your health ---

Let us know as soon as you do!

Sue

Sleep apnea

Risk factors

Obstructive sleep apnea

Excess weight. Fat deposits around your upper airway may obstruct your

breathing. However, not everyone who has sleep apnea is overweight. Thin

people develop the disorder, too.

Neck circumference. The size of your neck may indicate whether or not you

have an increased risk of sleep apnea. That's because a thick neck may

narrow the airway and may be an indication of excess weight. A neck

circumference greater than 17.5 inches (44 centimeters) is associated with

an increased risk of obstructive sleep apnea.

High blood pressure (hypertension). Sleep apnea is not uncommon in people

with hypertension.

A narrowed airway. You may inherit a naturally narrow throat. Or, your

tonsils or adenoids may become enlarged, which can block your airway.

Being male. Men are twice as likely to have sleep apnea as women are.

However, women increase their risk if they're overweight, and the risk also

appears to rise after menopause.

Being older. Sleep apnea occurs two to three times more often in adults

older than 65.

Family history. If you have family members with sleep apnea, you may be at

increased risk.

Use of alcohol, sedatives or tranquilizers. These substances relax the

muscles in your throat.

Smoking. Smokers are three times as likely to have obstructive sleep apnea

than are people who've never smoked. Smoking may increase the amount of

inflammation and fluid retention in the upper airway. This risk likely drops

after you quit smoking.

On 10/12/08 9:36 PM, " Mike Lawson " <mlawson66@...> wrote:

>

>

>

> My PCP is skinny as a rail and she has sleep apnea and

> apparently PAP therapy has improved her quality of life.

> Now everything looks like sleep apnea to her. Ouch, my

> appendix hurts. GO GET A SLEEP STUDY! Sheesh, what

> next...

>

>

>>>>> > >> > ...My PCP says that almost

>>>>> > >> > everyone that is tested comes back with sleep apnea to

>>>>> > >> > some degree....

>>> > >

>>> > > I have heard that is true if the neck size is greater than 18 inches.

>>> > >

>>> > > Chuck

>>> > >

>> >

>> >

>> >

>> >

[Guest guest]

Yep, I'm screwed any way you look at it...

I've lost 90 lbs so far this year, but I do still have a way to go.

I've had my nose broken, and inherited some nasal blockages

from my dad. He is a character. He likes football, figure skating

and gymnastics, rodeo, wears a kilt (I'm 1/4 scott, 1/4 german

and somewhere south of 1/2 Native American), listens to

twangy country & western, but also enjoys classical. He is also

a psychologist. The man is a walking conundrum...

I've had quite a bit of head trauma, and my mom had a benign

tumor on her pituitary, and my other grandfather had tumors

in his brain too. I probably do have a short circuit or two. :-)

Thanks for posting the article.

-Mike :-)

> >>>>> > >> > ...My PCP says that almost

> >>>>> > >> > everyone that is tested comes back with sleep apnea to

> >>>>> > >> > some degree....

> >>> > >

> >>> > > I have heard that is true if the neck size is greater than 18 inches.

> >>> > >

> >>> > > Chuck

> >>> > >

> >> >

> >> >

> >> >

> >> >

[Guest guest]

Mike that is AWESOME you lost 90 freaking pounds in less than 10 months ‹

holy moly!

GOOD job!

Really though, CPAP will help you, or has the potential to ‹ my husband¹s

friend just went on it and is now sleeping like a baby (quietly) through the

night!

My Doc wants me to have one, LOL, so yeah, it¹s the ³test of the year² kind

of thing ‹ were you able to get to sleep with all the wires and monitors on

you?

When my husband had it done, there was one pillow, he had to stay on his

back and monitors everywhere.

I sleep on my side, lots of pillows, a body pillow and all scrunched up...

Don¹t see how I could sleep lying on my back, that¹s reserved for my

³contemplative-can¹t get to sleep² nights....

How was it for you?

sue

On 10/13/08 11:46 AM, " Mike Lawson " <mlawson66@...> wrote:

>

>

>

> Yep, I'm screwed any way you look at it...

>

> I've lost 90 lbs so far this year, but I do still have a way to go.

>

> I've had my nose broken, and inherited some nasal blockages

> from my dad. He is a character. He likes football, figure skating

> and gymnastics, rodeo, wears a kilt (I'm 1/4 scott, 1/4 german

> and somewhere south of 1/2 Native American), listens to

> twangy country & western, but also enjoys classical. He is also

> a psychologist. The man is a walking conundrum...

>

> I've had quite a bit of head trauma, and my mom had a benign

> tumor on her pituitary, and my other grandfather had tumors

> in his brain too. I probably do have a short circuit or two. :-)

>

> Thanks for posting the article.

>

> -Mike :-)

>

>>>>>>>>>>> > >>>>> > >> > ...My PCP says that almost

>>>>>>>>>>> > >>>>> > >> > everyone that is tested comes back with sleep apnea

to

>>>>>>>>>>> > >>>>> > >> > some degree....

>>>>>>> > >>> > >

>>>>>>> > >>> > > I have heard that is true if the neck size is greater than 18

inches.

>>>>>>> > >>> > >

>>>>>>> > >>> > > Chuck

>>>>>>> > >>> > >

>>>>> > >> >

>>>>> > >> >

>>>>> > >> >

>>>>> > >> >

[Guest guest]

Thanks Sue.

I will certainly give the scuba mask a try... I wish my 2 docs

could agree. One says it is pituitary and the other says it

is sleep apnea. With my luck, it is probably both.

Oh man, it takes them 45 minutes to wire you up. They put

this eletroconductive goop at various places on your scalp

and proceed to try and push the electrode through your skull.

Then they put these bands around your waist, belly and legs.

Finally, they stick 2 different sensors up your nose. Oh,

I almost forgot all the EKG wires that are also included. I'm

just surprised and glad that they didn't attach any electrodes

or sensors to the nether regions...

I was really sleepy when I went in there, but after they wired

me up, I was wired myself and had trouble sleeping. I took

about twice the amount of stuff that I usually use if I am

having insomnia and finally went to sleep after a couple hours

of trying not to dislodge the wires. Then, they kept coming

in throughout the night replacing or reattaching wires.

That was the worst night of sleep ever for me. It wouldn't

have been bad if they hadn't had to keep reattaching wires.

If I have to go back and test again, this time with a scuba

mask, I'm not messing around. I'll take the ambien that

the doc offered.

> >>>>>>>>>>> > >>>>> > >> > ...My PCP says that almost

> >>>>>>>>>>> > >>>>> > >> > everyone that is tested comes back with sleep

apnea

> to

> >>>>>>>>>>> > >>>>> > >> > some degree....

> >>>>>>> > >>> > >

> >>>>>>> > >>> > > I have heard that is true if the neck size is greater than

18

> inches.

> >>>>>>> > >>> > >

> >>>>>>> > >>> > > Chuck

> >>>>>>> > >>> > >

> >>>>> > >> >

> >>>>> > >> >

> >>>>> > >> >

> >>>>> > >> >

[Guest guest]

Mike, are you joking?

The put an electrode through your skull?

You are just joshin¹ me right?

Sensors up your nose?

C¹mon.. Really?

Lucky you were sleepy when you got there, lucky!

They had my husband show up at like 8 pm and he goes to bed normally at

midnight...

He said everytime he turned on his side they would make him roll over.

I would definitely need a sleeping pill or two!

Is it as least dark and quiet?

Geeeeezzzzzzzz, I think If I go, it would be a total wash out, I am a

³picky¹ sleepy.

Once I get comfy I am out for the count but I am not one of those who can

sleep sitting up, in a car, etc.

I have to be in a dark, comfy room in my comfy bed in a near-fetal position

and then I am set to snore the night away! LOL...

I will have to find out what they do at our labs .. And see if it¹s worth me

coming in...

Thanks!

Sue

On 10/13/08 12:11 PM, " Mike Lawson " <mlawson66@...> wrote:

>

>

>

> Thanks Sue.

>

> I will certainly give the scuba mask a try... I wish my 2 docs

> could agree. One says it is pituitary and the other says it

> is sleep apnea. With my luck, it is probably both.

>

> Oh man, it takes them 45 minutes to wire you up. They put

> this eletroconductive goop at various places on your scalp

> and proceed to try and push the electrode through your skull.

> Then they put these bands around your waist, belly and legs.

> Finally, they stick 2 different sensors up your nose. Oh,

> I almost forgot all the EKG wires that are also included. I'm

> just surprised and glad that they didn't attach any electrodes

> or sensors to the nether regions...

>

> I was really sleepy when I went in there, but after they wired

> me up, I was wired myself and had trouble sleeping. I took

> about twice the amount of stuff that I usually use if I am

> having insomnia and finally went to sleep after a couple hours

> of trying not to dislodge the wires. Then, they kept coming

> in throughout the night replacing or reattaching wires.

> That was the worst night of sleep ever for me. It wouldn't

> have been bad if they hadn't had to keep reattaching wires.

>

> If I have to go back and test again, this time with a scuba

> mask, I'm not messing around. I'll take the ambien that

> the doc offered.

>

>

>>>>>>>>>>>> > >>>>>>>>>>> > >>>>> > >> > ...My PCP says that almost

>>>>>>>>>>>> > >>>>>>>>>>> > >>>>> > >> > everyone that is tested comes back

with sleep

> apnea

>> > to

>>>>>>>>>>>> > >>>>>>>>>>> > >>>>> > >> > some degree....

>>>>>>>>>>>> > >>>>>>> > >>> > >

>>>>>>>>>>>> > >>>>>>> > >>> > > I have heard that is true if the neck size is

greater than 18

>> > inches.

>>>>>>>>>>>> > >>>>>>> > >>> > >

>>>>>>>>>>>> > >>>>>>> > >>> > > Chuck

>>>>>>>>>>>> > >>>>>>> > >>> > >

>>>>>>>>>>> > >>>>> > >> >

>>>>>>>>>>> > >>>>> > >> >

>>>>>>>>>>> > >>>>> > >> >

>>>>>>>>>>> > >>>>> > >> >

[Guest guest]

See below...

> >>>>>>>>>>>> > >>>>>>>>>>> > >>>>> > >> > ...My PCP says that almost

> >>>>>>>>>>>> > >>>>>>>>>>> > >>>>> > >> > everyone that is tested

comes back

> with sleep

> > apnea

> >> > to

> >>>>>>>>>>>> > >>>>>>>>>>> > >>>>> > >> > some degree....

> >>>>>>>>>>>> > >>>>>>> > >>> > >

> >>>>>>>>>>>> > >>>>>>> > >>> > > I have heard that is true if the neck size

is

> greater than 18

> >> > inches.

> >>>>>>>>>>>> > >>>>>>> > >>> > >

> >>>>>>>>>>>> > >>>>>>> > >>> > > Chuck

> >>>>>>>>>>>> > >>>>>>> > >>> > >

> >>>>>>>>>>> > >>>>> > >> >

> >>>>>>>>>>> > >>>>> > >> >

> >>>>>>>>>>> > >>>>> > >> >

> >>>>>>>>>>> > >>>>> > >> > [Non-text portions of this message have been

removed]

> >>>>>>>>>>> > >>>>> > >> >

> >>>>>>> > >>> > >

> >>>>>>> > >>> > >

> >>>>>>> > >>> > >

> >>>>> > >> >

> >>>>> > >> >

> >>>>> > >> >

> >>>>> > >> >

> >>>>> > >> >