Re: Digest Number 77

[Guest guest]

I have been on the Schering peg and am a total

non responder. You have to just ask about

trials and get in on one. I am waiting for the

Roche Pegasus form due to lots of reasons. As I

said you can get treatment if you are other than

naive but have to look.

Ane

[Guest guest]

Has anyone found HBOT in Iowa? Will medicaid pay for this if I have to go out

of state? My son is 14 and we had 20 treatments with great success, we need to

find funding as we also travel to Poland for an intensive physical therapy

program which has given us tremendous gains.

Thanks for your help,

Lynette

__________________________________________________

[Guest guest]

Please remove teb@... from your e-mail list. Thank you.

Re: [ ] Digest Number 77

>Has anyone found HBOT in Iowa? Will medicaid pay for this if I have to go

out

>of state? My son is 14 and we had 20 treatments with great success, we

need to

>find funding as we also travel to Poland for an intensive physical therapy

>program which has given us tremendous gains.

>Thanks for your help,

>Lynette

>

>__________________________________________________

>

[Guest guest]

Hi all:

Just saw my orthopod this morning. Everything is a go. Naturally, my stasis

dermatitis is acting up. They put an unna boot on my left leg to dry it up.

If it doesn't, I will only have the right one done. Darn it.

We talked about pain meds. He is going to use Dalaudin (sp) and Vicodin. I

wanted the pump. How does this compare to Morphine? That means I will have

to ask for a shot. I don't like that idea at all. You know how nurses are.

They take their time.

If you lost 20 lbs. during this process, I should be at goal weight of 160.

I think I could do it as I will have a structured diabetic diet with small

portions and no in between snacks.

I feel so good after the bypass. If you have a lot to loose, I would take

the chance and do it. You will never regret it. I can't believe I have done

this all in two years.

Talk to you all soon.

Carole - AKA Thorn Willowweb, AKA Daisy Proudfoot of Standelf.

God grant me the Senility to forget the people I never liked anyway, the

good fortune to run into the ones I do, and the eyesight to tell the

difference.

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

I think I lost my mind, so watch where you step!

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

[Guest guest]

Hello.....I'm 9 days post op with a Birmingham hip resurfacing in my

left hip....had a general and a morphine spinal block....followed by

oxycodone after surgery...I've had very little pain I could'nt deal

with....the oxycodone is a morphine based 12 hour pill....worked

great....by day 3 I was on tylenol 3's .....good

luck!

> Hi all:

>

> Just saw my orthopod this morning. Everything is a go. Naturally,

my stasis

> dermatitis is acting up. They put an unna boot on my left leg to

dry it up.

> If it doesn't, I will only have the right one done. Darn it.

>

> We talked about pain meds. He is going to use Dalaudin (sp) and

Vicodin. I

> wanted the pump. How does this compare to Morphine? That means I

will have

> to ask for a shot. I don't like that idea at all. You know how

nurses are.

> They take their time.

>

> If you lost 20 lbs. during this process, I should be at goal weight

of 160.

> I think I could do it as I will have a structured diabetic diet

with small

> portions and no in between snacks.

>

> I feel so good after the bypass. If you have a lot to loose, I

would take

> the chance and do it. You will never regret it. I can't believe I

have done

> this all in two years.

>

> Talk to you all soon.

>

> Carole - AKA Thorn Willowweb, AKA Daisy Proudfoot of Standelf.

>

> God grant me the Senility to forget the people I never liked

anyway, the

> good fortune to run into the ones I do, and the eyesight to tell the

> difference.

> ·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

> I think I lost my mind, so watch where you step!

>

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

[Guest guest]

After surgery, I had no appetite...I filled out the hospital menu with great

expectations, but....being hospital food, it just didn't look like the

pictures <smile>. Wife brought in girl scout cookies....never even touched

the box (I usually eat them all at one sitting).

For several weeks after, I had to force myself to eat, just no appetite.

Had a friend that had back surgery, same thing. He lost 30, but he gained

it all back. I've cut down portions considerably, still don't eat the right

things but have managed to not gain it back. I started at about 220,

hanging right at 199 now. Not obese but docs call it " well fed. " I did my

short half mile walk twice yesterday, still have muscles complaining.

During therapy this morning, figured out why the muscles are

complaining...doing my straight leg lifts and leg curls.

See doc on Friday...therapist said today may have been my last day....I have

121 flex in both knees without assistance (probably 125 if I pulled on them

with a belt), right leg is straight, left is at -3. Can't complain.

I'm not well versed in pain meds. I couldn't have an epidural because they

were putting me on coumadin right away so they gassed me. When I woke up,

they were filling me with morphine and they were concerned about blood in my

urine...botched up job with catheter was reason for that.

I had a pump, but it only worked every 10 minutes..I would have preferred

more often. I had a morphine drip and they would give me Demerol (sp?).

About the third day, they would ask what I wanted, percocet or the Demerol.

Most of the discomfort I had was due to not all nurses were well versed in

setting the CPM machine. And I wasn't paying attention to body position,

raising/lowering the head end of the bed made a world of difference. For

the first several days, it was 6 hours on one leg, then 6 on the other. We

kept rotating 24 hours per day. Day 5 I was tired of the machine and laid

off several hours during the day...nurses said I used the machine the most

of anyone they'd ever seen. When I got home, I kept the thing going 24

hours a day for nearly a week....

The biggest thing is to maintain a positive attitude and realize that this

is all temporary and once it is all done, you'll be much happier than you

were before.

Tim T.

Re: Digest Number 77

Hi all:

Just saw my orthopod this morning. Everything is a go. Naturally, my stasis

dermatitis is acting up. They put an unna boot on my left leg to dry it up.

If it doesn't, I will only have the right one done. Darn it.

We talked about pain meds. He is going to use Dalaudin (sp) and Vicodin. I

wanted the pump. How does this compare to Morphine? That means I will have

to ask for a shot. I don't like that idea at all. You know how nurses are.

They take their time.

If you lost 20 lbs. during this process, I should be at goal weight of 160.

I think I could do it as I will have a structured diabetic diet with small

portions and no in between snacks.

I feel so good after the bypass. If you have a lot to loose, I would take

the chance and do it. You will never regret it. I can't believe I have done

this all in two years.

Talk to you all soon.

Carole - AKA Thorn Willowweb, AKA Daisy Proudfoot of Standelf.

God grant me the Senility to forget the people I never liked anyway, the

good fortune to run into the ones I do, and the eyesight to tell the

difference.

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

I think I lost my mind, so watch where you step!

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

[Guest guest]

Well guys,

My time has come to join the rest of you. Before I hit the sack, I will turn

on the no mail in and will be back hopefully in three weeks after my

stay at " Club " General for torture rehab. LOL

Carole - AKA Thorn Willowweb, AKA Daisy Proudfoot of Standelf.

God grant me the Senility to forget the people I never liked anyway, the

good fortune to run into the ones I do, and the eyesight to tell the

difference.

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

I think I lost my mind, so watch where you step!

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

[Guest guest]

When my emotions get me, I feel much like you. I have been working on

breaking that cycle because for me, I can't think in that state. I'm

trying to look from a logical point, because there is a reason for

everything. And it is not always your fault, so don't get down on

yourself. You are not a failure because you don't lose, only because

you don't try. You are trying and working hard, and it will work.

Don't give up 5 minutes before the miracle. Wait for it and it will

come, sometimes not as fast as we would like. That is my problem, I have

no patience sometimes for this. I want to be skinny now, but I have

learned to accept it doesn't work that way, so I have to have patience

when I only lose 1/2 lb instead of 2 or even 1.

Also, just realize that if you just started at the gym, you are burning

more energy and your body may be looking for more calories, therefore

making you feel hungrier. I had a really good weight watchers coach

that told us this once, and I've noticed it was true. Make sure that

the food you put in is high quality and as long as you are moving the

weight will come off.

Another thing to take into consideration is that working out builds

muscle, and muscle weighs more than fat. You may not notice a big drop

in lbs, but I'm sure if you be patient and use that measuring tape, you

will see inches come off in places you never dreamed of.

Keep up your faith, and it will come off.

[Corina Droz] Corina

<< Date: Sat, 16 Oct 2004 22:16:18 -0000

From: " velvetchain_1999 " <velvetchain_1999@...>

Subject: HELP PLEASE

I'm at a total loss. I seem to have lost my momentum in doing this

weight loss programme. I have been eating non stop and I cannot seen

to get full. I am crying all night, thinking why is this happening I

was doing so well, what made me lose it all. I'm due to weigh myself

tomorrow and I am dreading it. I started the gym last Sunday and

have been going every other day. I went today and I'm going

(hopefully) tomorrow. I need to focus and I need you all to help me

in some way so that I can get on track again. I have not been sick

and I have been overeating abit that my stomach is full.

What am I to do please tell me.

velvet.>>

[Guest guest]

Colourbleu- I try to take 1000-2000 mcg B12

sublingual, sometimes alternating with methylcobolamin

1mg depending on what I have available.

Re: Flagyl Pulsing- The other reason it's recommended

to pulse the dose, in addition to herx and general

side effects, is that long term high dose can cause

neuropathies and other problems. Can't imagine

tolerating it continuously anyway!

Jim

Re: Message: 13

Date: Sat, 23 Apr 2005 19:35:40 +0200

From: Colourbleu <colourbleu@...>

Subject: Re: Digest Number 76

whats your B12 intake at the moment?

[Guest guest]

I am on my second " round " of Flagyl. 250mg three times a day, for

ten days. I love it. This is after 10 months of on-off Doxycycline.

However, I am herxing a little but not nearly as bad as when I take

Doxy for prolonged periods of more than 2 weeks. When I herx from

Doxy, I am crying and bleeting like a sheep for pain meds. If I

prolonged this course of Flagyl, I would probably end up there.

WE have learned over the months how far to take the dosing.

At this point, I am between 75-85% recovered after 25+ years CFS/ME

and fibromyalgia and osteo arthritis.

In my mind, it comes down to being able to accurately diagnose what

infection or fungus or parasite or virus, is active at any given

time - and then treat it. Basic stuff - start somewhere, and, it

ain't over till it's over.

Now, if I could just figure out what all the cysts in my joints are

from. Anyone else out there have little cysts (not rheumatoid) in

all their joints? I didn't discover mine until I lost a bunch of

weight, once.

Cheers,

*Sue*

> Colourbleu- I try to take 1000-2000 mcg B12

> sublingual, sometimes alternating with methylcobolamin

> 1mg depending on what I have available.

>

> Re: Flagyl Pulsing- The other reason it's recommended

> to pulse the dose, in addition to herx and general

> side effects, is that long term high dose can cause

> neuropathies and other problems. Can't imagine

> tolerating it continuously anyway!

> Jim

>

> Re: Message: 13

> Date: Sat, 23 Apr 2005 19:35:40 +0200

> From: Colourbleu <colourbleu@f...>

> Subject: Re: Digest Number 76

>

> whats your B12 intake at the moment?

[Guest guest]

Sue, I have cysts around my knees and down my chins.

They seem to have appeared in the last year or so.

That is also when my osteoarthritis has flared to an

all time high.

Some are painless and some have a pain that feels like

fire when touched.

Marie

--- Sue <invisigyrl@...> wrote:

>

> I am on my second " round " of Flagyl. 250mg three

> times a day, for

> ten days. I love it. This is after 10 months of

> on-off Doxycycline.

> However, I am herxing a little but not nearly as bad

> as when I take

> Doxy for prolonged periods of more than 2 weeks.

> When I herx from

> Doxy, I am crying and bleeting like a sheep for pain

> meds. If I

> prolonged this course of Flagyl, I would probably

> end up there.

> WE have learned over the months how far to take the

> dosing.

> At this point, I am between 75-85% recovered after

> 25+ years CFS/ME

> and fibromyalgia and osteo arthritis.

>

> In my mind, it comes down to being able to

> accurately diagnose what

> infection or fungus or parasite or virus, is active

> at any given

> time - and then treat it. Basic stuff - start

> somewhere, and, it

> ain't over till it's over.

> Now, if I could just figure out what all the cysts

> in my joints are

> from. Anyone else out there have little cysts (not

> rheumatoid) in

> all their joints? I didn't discover mine until I

> lost a bunch of

> weight, once.

> Cheers,

> *Sue*

>

>

>

> > Colourbleu- I try to take 1000-2000 mcg B12

> > sublingual, sometimes alternating with

> methylcobolamin

> > 1mg depending on what I have available.

> >

> > Re: Flagyl Pulsing- The other reason it's

> recommended

> > to pulse the dose, in addition to herx and general

> > side effects, is that long term high dose can

> cause

> > neuropathies and other problems. Can't imagine

> > tolerating it continuously anyway!

> > Jim

> >

> > Re: Message: 13

> > Date: Sat, 23 Apr 2005 19:35:40 +0200

> > From: Colourbleu <colourbleu@f...>

> > Subject: Re: Digest Number 76

> >

> > whats your B12 intake at the moment?

>

>

>

>

__________________________________________________

[Guest guest]

sue are you doing high doses of b12 too?

4 now on flagyl pulse., This is really interesting.

>

> I am on my second " round " of Flagyl. 250mg three times a day, for

> ten days. I love it. This is after 10 months of on-off Doxycycline.

> However, I am herxing a little but not nearly as bad as when I take

> Doxy for prolonged periods of more than 2 weeks. When I herx from

> Doxy, I am crying and bleeting like a sheep for pain meds. If I

> prolonged this course of Flagyl, I would probably end up there.

> WE have learned over the months how far to take the dosing.

> At this point, I am between 75-85% recovered after 25+ years CFS/ME

> and fibromyalgia and osteo arthritis.

>

> In my mind, it comes down to being able to accurately diagnose what

> infection or fungus or parasite or virus, is active at any given

> time - and then treat it. Basic stuff - start somewhere, and, it

> ain't over till it's over.

> Now, if I could just figure out what all the cysts in my joints are

> from. Anyone else out there have little cysts (not rheumatoid) in

> all their joints? I didn't discover mine until I lost a bunch of

> weight, once.

> Cheers,

> *Sue*

>

>

>

> > Colourbleu- I try to take 1000-2000 mcg B12

> > sublingual, sometimes alternating with methylcobolamin

> > 1mg depending on what I have available.

> >

> > Re: Flagyl Pulsing- The other reason it's recommended

> > to pulse the dose, in addition to herx and general

> > side effects, is that long term high dose can cause

> > neuropathies and other problems. Can't imagine

> > tolerating it continuously anyway!

> > Jim

> >

> > Re: Message: 13       

> >    Date: Sat, 23 Apr 2005 19:35:40 +0200

> >    From: Colourbleu <colourbleu@f...>

> > Subject: Re: Digest Number 76

> >

> > whats your B12 intake at the moment?

>

>

>

>

>

[Guest guest]

B12 - yes, high doses? I dunno. (10mcg)

I was instructed to add two Standard Process supplements - Trace

Minerals with B12 and B6 Niacinimide. However, when testing with

these supps, we found that they are hard on the liver and so I was

advised to finish one bottle of each - tomorrow we will re-test as I

have just today finished them and I have an appt. tomorrow.

I will probably look for something other than cynocobalamin.

*S*

> > > Colourbleu- I try to take 1000-2000 mcg B12

> > > sublingual, sometimes alternating with methylcobolamin

> > > 1mg depending on what I have available.

> > >

> > > Re: Flagyl Pulsing- The other reason it's recommended

> > > to pulse the dose, in addition to herx and general

> > > side effects, is that long term high dose can cause

> > > neuropathies and other problems. Can't imagine

> > > tolerating it continuously anyway!

> > > Jim

> > >

> > > Re: Message: 13       

> > >    Date: Sat, 23 Apr 2005 19:35:40 +0200

> > >    From: Colourbleu <colourbleu@f...>

> > > Subject: Re: Digest Number 76

> > >

> > > whats your B12 intake at the moment?

> >

> >

> >

> >

> >

[Guest guest]

Hi Cheryl-Anne,

I'm sorry to her about your friend who did not survive his cml. You sound

so calm and accepting. I think I'm getting better about things, but I'm not

where you are yet. I still have lots of anxiety to work through.

I do feel encouraged by all the new trials and research. I agree that the

best we can do is to take care of ourselves so that we can be ready for the

real cure, when it comes. I think it's coming and I certainly hope it's

within our lifetimes.

Thanks for caring,

in NY