Re: A Weighty Question

[Guest guest]

HI Sara

 

You are not the only one by any means. I've gained 60lbs! And many others have

gained far too much weight as well.

 

Sudylo RN / CHT

www.juliashbot.com

From: Sara <srobinson@...>

Subject: [ ] A Weighty Question

Date: Friday, November 28, 2008, 7:23 PM

I finally gave in and bought a DVD copy of " Under Our Skin. " And I'm

really glad I did. It's a beautifully well-told story, and I'm

planning to pack it along for family Christmas, to show interested

parties exactly what's up with me.

I especially liked Jordan's story. I grew up (and probably got Lyme)

in that same stretch of the Sierra. Watching him hike the high peaks

made me achingly homesick -- not that I could hike them in my current

condition anyway. The prospect of never being able to return to the

high country again is one of the hardest pieces of grieving around

this illness. I can only imagine how he felt.

There was one thing about the film that got me, though. Every one of

the profiled patients was excruciatingly thin -- anorexic, almost. And

I can't believe I'm not the only one of us (or am I?) who's had the

opposite reaction to this disease: I'm up nearly 60 pounds over the

past 15 years, mostly because the pain and exhaustion from this

disease made me so sedentary. I work out, I wipe out.

I'm concerned that people will see this film and think that I can't

possibly have Lyme, because I don't show the same kind of wasting. I

know moviemakers really prefer to put skinny people on camera; but as

well-chosen as the featured Lymies were, it would have been a real

service to show at least one who was gaining, not losing, weight due

to the disease.

Thoughts?

BTW, the doctor in Seattle is not the one I'm seeing.

Sara

[Guest guest]

Hi Sara -

I was told that either you become very thin or you blow up like a

balloon. I have become a balloon - and when does it stop? Over the

last ten years I have gained more than 70 pounds - I do not overeat

and my one doctor told me years ago " If you would just lose 50 lbs

you would feel great!! " Needless to say - I never went back. I was

never overweight in my life - it's a terrible thing because we hardly

have enough money for treatment and then we have to buy clothes to

fit our body that really clearly is not our body - it's a lyme body

and I pray just like this disease to be rid of it

After all skinny is unhealthy looking than what is being a balloon -

??

I am also going to buy one of the movies - not sure if it will open

everyones eyes thow - at Thanksgiving my sister-in-laws didnt help

clean up because they " work " and after all I just stay home and do

nothing. So because of that this is the first time that I am getting

out of bed from Thanksgiving - I still am very ill and hurt so much

all over - my feet I can hardly even walk - do you just stop telling

them that you are sick because the eye rolling behind your back hurts

or do you just not attend family functions anymore??

Take care and good luck with your healing!!

Diane

[Guest guest]

A woman on another lyme group like a book called " Potbelly Syndrome " which

apparently

has a different take on weight. I've ordered it and will report on my findings.

Sheryl

>

> From: Sara <srobinson@...>

> Subject: [ ] A Weighty Question

>

> Date: Friday, November 28, 2008, 7:23 PM

>

>

>

>

>

>

> I finally gave in and bought a DVD copy of " Under Our Skin. " And I'm

> really glad I did. It's a beautifully well-told story, and I'm

> planning to pack it along for family Christmas, to show interested

> parties exactly what's up with me.

>

> I especially liked Jordan's story. I grew up (and probably got Lyme)

> in that same stretch of the Sierra. Watching him hike the high peaks

> made me achingly homesick -- not that I could hike them in my current

> condition anyway. The prospect of never being able to return to the

> high country again is one of the hardest pieces of grieving around

> this illness. I can only imagine how he felt.

>

> There was one thing about the film that got me, though. Every one of

> the profiled patients was excruciatingly thin -- anorexic, almost. And

> I can't believe I'm not the only one of us (or am I?) who's had the

> opposite reaction to this disease: I'm up nearly 60 pounds over the

> past 15 years, mostly because the pain and exhaustion from this

> disease made me so sedentary. I work out, I wipe out.

>

> I'm concerned that people will see this film and think that I can't

> possibly have Lyme, because I don't show the same kind of wasting. I

> know moviemakers really prefer to put skinny people on camera; but as

> well-chosen as the featured Lymies were, it would have been a real

> service to show at least one who was gaining, not losing, weight due

> to the disease.

>

> Thoughts?

>

> BTW, the doctor in Seattle is not the one I'm seeing.

>

> Sara

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I am so glad others noticed in the film; the first thing my mom said

after watching it was how thin they all were; I've gained over 40

pounds in 18 months!! How is that even possible? I have never in my

life counted a calorie or been on a diet; it happened so fast despite

that I was still able to walk at that point and was eating very little

(under 1200 cals a day). I was so depressed I did the HCG injection

diet and it worked; I lost 30 lbs in 30 days; kept the weight off for

a few months and have gained back 10 in just the last few weeks (been

real sick again) Anyone have any ideas how we can get into that

category of those who are thin from LD; bad enough being so sick but

to be feel fat and ugly makes it so much worse! Did have all my

hormones checked; have been on thryroid for 2 years now so I know

that's not the answer.

>

> HI Sara

>

> You are not the only one by any means. I've gained 60lbs! And many

others have gained far too much weight as well.

>

>

>

> Sudylo RN / CHT

>

[Guest guest]

Even though I was taking synthroid I gained 60 pounds during 7 years.  My

general doctor wanted to put me on a diet because the blood work showed my

thyroid in the normal range.  I have always been careful to eat whole grains and

make healthier food choices.  But even so, I still continued to gain weight. 

 

Since I started taking supplements for adrenals and cortisol and also T3 I have

been loosing weight; 30 pounds so far.  

 

From: Sara <srobinson@...>

Subject: [ ] A Weighty Question

Date: Friday, November 28, 2008, 7:23 PM

I finally gave in and bought a DVD copy of " Under Our Skin. " And I'm

really glad I did. It's a beautifully well-told story, and I'm

planning to pack it along for family Christmas, to show interested

parties exactly what's up with me.

I especially liked Jordan's story. I grew up (and probably got Lyme)

in that same stretch of the Sierra. Watching him hike the high peaks

made me achingly homesick -- not that I could hike them in my current

condition anyway. The prospect of never being able to return to the

high country again is one of the hardest pieces of grieving around

this illness. I can only imagine how he felt.

There was one thing about the film that got me, though. Every one of

the profiled patients was excruciatingly thin -- anorexic, almost. And

I can't believe I'm not the only one of us (or am I?) who's had the

opposite reaction to this disease: I'm up nearly 60 pounds over the

past 15 years, mostly because the pain and exhaustion from this

disease made me so sedentary. I work out, I wipe out.

I'm concerned that people will see this film and think that I can't

possibly have Lyme, because I don't show the same kind of wasting. I

know moviemakers really prefer to put skinny people on camera; but as

well-chosen as the featured Lymies were, it would have been a real

service to show at least one who was gaining, not losing, weight due

to the disease.

Thoughts?

BTW, the doctor in Seattle is not the one I'm seeing.

Sara

[Guest guest]

, that's pretty much exactly what happened to me. Getting on

thyroid in 1999 really helped my energy levels, and there were places

in my body (shoulders, neck, jaw) that were in constant stress that

finally relaxed for good. My dental health, though never bad,

improved; and so did my skin and hair. Between the thyroid and the

natural hormones, I have outrageously thick hair for a woman of 50.

The really weird thing was the body temp. After a few months of

treatment, when my temperature began to normalize, I realized that I'd

slowly collected a fabulous pile of huge shawls over the years,

without even really being aware of it. It was an unconscious thing;

but I was careful to never leave the house without taking a " blanket "

with me so I could handle the chills when they came. (And I lived in

California at the time, so it's not like the weather was extreme.) It

was only after I didn't need them any more that I finally noticed

that. Talk about denial.

Fortunately, I live in Canada now, so they're seeing quite a bit of

use again -- but only in the winter, when everybody else is wrapping

up, too.

But the promise of weight loss never materialized, though I guess the

gaining did slow to a crawl once I got on the thyroid. I'm pretty much

the same weight now I was five years ago. It's just that more of it is

front and center now ; ). And that's clearly a cortisol issue, as

others have noted. I don't know why I'd have that cropping up now.

Sara

On Nov 30, 2008, at 12:27 PM, wrote:

> Hi Sara:

>

> I, too, gained soooo much weight. I had been thin all of my life -

> I would hover between too thin and sometimes slightly " puffy " (which

> I now think was also Lyme related as I was first bit when I was

> about 7, 8 or 9 years old). Altho' I have always had a poor

> appetite (which started around the time of the first bite), when I

> got really, really sick, I lost lots of weight in a short period of

> time and then begain gaining weight, and gaining, and gaining. I

> had chronic pain so some of it was due to inactivity, but I later

> discovered that my thyroid completely " pooped out " and that was the

> main reason for the weight gain. I gained almost 100 pounds before

> I found a dr. to run " alternative " thyroid testing: temperature,

> heart rate & blood pressure charted for a month (every hour these

> systems were " taken " and charted). All of these systems were slow

> or low (average temp. ran 96.8) heartrate was slow and blood

> pressure was low. My hair fell out by the handsful, as well. She

> put me on Armour thyroid (not synthroid or any other synthetic

> thyroid). This was before my Lyme dx, so I was lucky to find a doc

> who used the proper type of medication for a Lymie. Anyway, my

> weight gain pretty much stopped increasing. I never lost much (I

> still go up & down), but at least I didn't continue to put on more

> and more weight.

>

> I am still waaaaayyyyy overweight, but the thyroid has helped w/the

> hair loss, too. I know that my inactivity still causes me to not

> lose weight, but if I ever get the chronic pain and breathing

> problems under control, I hope to be able to excise again.

>

> good luck, hope this helps a bit.

>

>

[Guest guest]

Great information.  Thanks

From: Pwr2Heal <pwr2heal@...>

Subject: Re: [ ] Re:A Weighty Question

Date: Sunday, November 30, 2008, 6:12 PM

If thyroid testing is coming back normal it might be good to check reverse

T3 (rT3)

as well. One can have normal TSH, T3, T4 numbers but have a very high rT3,

and

rT3 tells the body to slow down the metabolism. Normally T4 is converted

into T3,

but when high levels of cortisol are present T4 will be converted into rT3

instead,

causing the body to slow things down, including the metabolism. High levels

of

rT3 can be present with low cortisol as well, in the case of adrenal

fatigue. Initially

cortisol is high during stress (from infection, etc), causing the high rT3,

then the

adrenals become exhausted over time and cortisol drops, but the body gets

stuck

at creating high rT3 (for some reason the reset switch isn't pushed, so to

speak).

Amy