Re: narcotic alternatives

[Guest guest]

Hi, Laurel.

If you could have a Genovations Detoxigenomic profile run, available

by doctor's order from http://www.genovations.com (at a price of

about $400 to the doctor, I think), you would be able to see which

of your detox enzymes have SNPs. With that information, you might be

able to select some anesthetic agents that you could tolerate.

Based on what you've reported, I would suspect that you might have

polymorphisms (SNPs) in your CYP2D6 and CYT3A4 enzymes.

If you look at the Flockhart table, you might be able to pin down

which of your detox enzymes have SNPs by looking at the lists of

drugs each one detoxes. These lists aren't complete, but perhaps

there are enough there that, combined with your experience with

various drugs, you might be able to narrow down to the most likely

ones to have SNPs.

The table can be found at

http://medicine.iupui.edu/flockhart/table.htm

Rich

>

> Hi --

>

> Well, my doctor's appointment that was last week had to be

rescheduled

> as he wasn't in that day although they had him on the schedule.

>

> In the meantime, I had a colonoscopy followed by a barium enema

> yesterday. Complete with an obvious (to me) reaction to too much

> demerol which they used to put me out. When I came out of it

after

> the barium enema I had trouble breathing, my throat was closed, I

was

> beyond dizzy. But of course, my vitals were all fine.

>

> They ended up moving me over to the ER for temporary observation

where

> the head of the ER (yet again) dismissed any of my comments

regarding

> the impact of my auto-immune disease on treatment.

>

> In the very rare times I use codeine and/or valium, I have to take

> half doses. I learned that about morphine and daladin (sp?) when

I

> had my diverticulitis attack in April which ended me in the

hospital.

> And obviously this is true for demerol.

>

> I'm sure all of this is related to my auto-immune disease and

likely

> tied to my genetic profile which I haven't had done yet.

>

> I've searched the archives but can't find anything related to my

> concerns which are discussed below.

>

> I'm looking for two bits of information:

>

> 1. Any alternative to narcotic medications that are as

effective? I

> don't anticipate needing any for a while but just in case.

>

> 2. Anyone have any documentation on the inconsistent reactions to

> medications by people with CFS and specifically how the reactions

may

> not be detectable by normal means?

>

> I am planning on meeting with the head of NAS Hospital as I'm

going to

> suggest an internal education program on these issues. I'm at my

> tolerance level for being dismisssed. And imagine there are

others

> who don't realize what's going on.

>

> Thanks,

> Laurel

>

[Guest guest]

I've had no problem whatsoever with taking morphine for years for

pain (not in the last year, however as most of my pain was due to

neuromas in my feet which were finally diagnosed and sufficiently

treated to not need the morphine any more). However, I did have a

colonoscopy and an endoscopy in the past year, both of which times

they insisted I have Versed and Demerol as sedatives, even though I

asked them to keep it to a bare minimum. I went into the procedures

with a normal blood pressure and pulse, 'woke up' after them feeling

I had been far more than merely sedated, but on both cases my blood

pressure dropped to 85/55 for a half hour or so afterward (the second

time, when it dropped to 83/53, a nurse started a dextrose solution

in my IV, which brought it back up). I have not had adverse reactions

to any other pharmaceutical that I can recall (except for an

experimental MS drug called 4-aminopyridine, which I subsequently

found out was a bird nerve poison, which I did not metabolize/detox

for a month although the doc claimed it should have left my system

within less than a day) and my internist thinks the problem with

Demerol/Versed was a symtom of CFS autonomic dysfynction rather than

a detox issue. Ring any bells with anyone? Detox genes versus autonomic?

[Guest guest]

Laurel, I used hypnosis when I had to have an endoscopy. It worked pretty well,

probably would've worked better if I could've afforded more practice sessions:

deeper trance. I got permission to take the hypnotherapist into the procedure

room with me.

I don't know if there is the documentation you want, but maybe you could,

instead of educating docs, learn how to make them listen. Some just won't and I

just see those once, no matter what. The others I argue with, plead with, bully.

And put up with some of their s_ _t some of the time.

Adrienne

narcotic alternatives

Hi --

Well, my doctor's appointment that was last week had to be rescheduled

as he wasn't in that day although they had him on the schedule.

In the meantime, I had a colonoscopy followed by a barium enema

yesterday. Complete with an obvious (to me) reaction to too much

demerol which they used to put me out. When I came out of it after

the barium enema I had trouble breathing, my throat was closed, I was

beyond dizzy. But of course, my vitals were all fine.

They ended up moving me over to the ER for temporary observation where

the head of the ER (yet again) dismissed any of my comments regarding

the impact of my auto-immune disease on treatment.

In the very rare times I use codeine and/or valium, I have to take

half doses. I learned that about morphine and daladin (sp?) when I

had my diverticulitis attack in April which ended me in the hospital.

And obviously this is true for demerol.

I'm sure all of this is related to my auto-immune disease and likely

tied to my genetic profile which I haven't had done yet.

I've searched the archives but can't find anything related to my

concerns which are discussed below.

I'm looking for two bits of information:

1. Any alternative to narcotic medications that are as effective? I

don't anticipate needing any for a while but just in case.

2. Anyone have any documentation on the inconsistent reactions to

medications by people with CFS and specifically how the reactions may

not be detectable by normal means?

I am planning on meeting with the head of NAS Hospital as I'm going to

suggest an internal education program on these issues. I'm at my

tolerance level for being dismisssed. And imagine there are others

who don't realize what's going on.

Thanks,

Laurel

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Hi ,

It's been many years since I had versed or demerol, but I did have CFIDS, and

did not have bad reaction. (the Demerol did not touch the post surgery pain,

tho).

I have NMH and low blood pressure, and there definitely are drugs that make me

feel weak, almost faint,which I think is the Autonomic. You can look on side

effects and see if low BP is one....I think that was the case with mine.

It's a different reaction than another I get that feels more toxic or allergy

per se.

It *Feels* like low BP. Check the insert.

A few things have both reactions, but they are distinguishable from each other.

In case this helps.

How did you resolve the Neuromas? I have Morton's Neuroma on a foot, which

imprisons me in tennis shoes with cushion. The Dr. does not want to do

surgery...he says I am too high risk...like for RSD. But Dr. Cheney was not sure

about that. He said the main thing is to have proper anesthesia and then he

defers to surgeon.

Did you have surgery? Magic shoes? ? I already went the Cortisone route.

Thanks!

Katrina

>

> I've had no problem whatsoever with taking morphine for years for

> pain (not in the last year, however as most of my pain was due to

> neuromas in my feet which were finally diagnosed and sufficiently

> treated to not need the morphine any more). However, I did have a

> colonoscopy and an endoscopy in the past year, both of which times

> they insisted I have Versed and Demerol as sedatives, even though I

> asked them to keep it to a bare minimum. I went into the procedures

> with a normal blood pressure and pulse, 'woke up' after them feeling

> I had been far more than merely sedated, but on both cases my blood

> pressure dropped to 85/55 for a half hour or so afterward (the second

> time, when it dropped to 83/53, a nurse started a dextrose solution

> in my IV, which brought it back up). I have not had adverse reactions

> to any other pharmaceutical that I can recall (except for an

> experimental MS drug called 4-aminopyridine, which I subsequently

> found out was a bird nerve poison, which I did not metabolize/detox

> for a month although the doc claimed it should have left my system

> within less than a day) and my internist thinks the problem with

> Demerol/Versed was a symtom of CFS autonomic dysfynction rather than

> a detox issue. Ring any bells with anyone? Detox genes versus autonomic?

>

[Guest guest]

>

> Hi --

>

> Well, my doctor's appointment that was last week had to be

rescheduled

> as he wasn't in that day although they had him on the schedule.

>

> In the meantime, I had a colonoscopy followed by a barium enema

> yesterday. Complete with an obvious (to me) reaction to too much

> demerol which they used to put me out.

***Hi Laurel - I had a colonoscopy back in May of this year and I

didn't have any drugs administered. The doctor who did the procedure

told me that for routine screening they don't usually bother with the

drugs. It is usually only when they anticipate finding something or are

going to do a biopsy that the drugs are needed.

Take care.

Bernie

[Guest guest]

Hi, .

Versed (midazolam) is metabolized by CYP3A4 for sure. Demerol

(meperidine) is extensively metabolized, but I haven't been able to

find out for sure which enzymes are involved. I think CYP3A4 is

involved, though. Haven't been able to find out which enzymes

process 4-aminopyridine (fampridine).

Rich

>

> I've had no problem whatsoever with taking morphine for years for

> pain (not in the last year, however as most of my pain was due to

> neuromas in my feet which were finally diagnosed and sufficiently

> treated to not need the morphine any more). However, I did have a

> colonoscopy and an endoscopy in the past year, both of which times

> they insisted I have Versed and Demerol as sedatives, even though

I

> asked them to keep it to a bare minimum. I went into the

procedures

> with a normal blood pressure and pulse, 'woke up' after them

feeling

> I had been far more than merely sedated, but on both cases my

blood

> pressure dropped to 85/55 for a half hour or so afterward (the

second

> time, when it dropped to 83/53, a nurse started a dextrose

solution

> in my IV, which brought it back up). I have not had adverse

reactions

> to any other pharmaceutical that I can recall (except for an

> experimental MS drug called 4-aminopyridine, which I subsequently

> found out was a bird nerve poison, which I did not

metabolize/detox

> for a month although the doc claimed it should have left my system

> within less than a day) and my internist thinks the problem with

> Demerol/Versed was a symtom of CFS autonomic dysfynction rather

than

> a detox issue. Ring any bells with anyone? Detox genes versus

autonomic?

>

[Guest guest]

On Aug 9, 2006, at 10:13 PM, rvankonynen wrote:

> Hi, .

>

> Versed (midazolam) is metabolized by CYP3A4 for sure. Demerol

> (meperidine) is extensively metabolized, but I haven't been able to

> find out for sure which enzymes are involved. I think CYP3A4 is

> involved, though. Haven't been able to find out which enzymes

> process 4-aminopyridine (fampridine).

I don't remember seeing Demerol on the CYP3A4 list you sent me,

Rich. And, though I'm moderately to severely sensitive to almost

everything related to this enzyme, I do pretty well with Demerol.

So I'm inclined to think that, even if there is a 3A4 involvement in

metabolizing Demerol, it's not likely to be the dominant agent in the

process.

Sara

[Guest guest]

Hi, Sara.

O.K., thanks! You're right, it's not on the Flockhart table, and I

didn't have any luck in my pharmacology books, either, so I was sort

of guessing about that. Demerol has been around for a long time,

and I think it has sort of been grandfathered in, without a good

look at its detox mechanisms.

But I'd say you're a pretty good canary for CYP3A4-metabolized

drugs, Sara, so I'm willing to believe you!

Rich

>

> > Hi, .

> >

> > Versed (midazolam) is metabolized by CYP3A4 for sure. Demerol

> > (meperidine) is extensively metabolized, but I haven't been able

to

> > find out for sure which enzymes are involved. I think CYP3A4 is

> > involved, though. Haven't been able to find out which enzymes

> > process 4-aminopyridine (fampridine).

>

> I don't remember seeing Demerol on the CYP3A4 list you sent me,

> Rich. And, though I'm moderately to severely sensitive to almost

> everything related to this enzyme, I do pretty well with Demerol.

>

> So I'm inclined to think that, even if there is a 3A4 involvement

in

> metabolizing Demerol, it's not likely to be the dominant agent in

the

> process.

>

> Sara

>

[Guest guest]

Thanks Rich. I appreciate the heads up on CYP3A4, but a drop in blood

pressure doesn't sound like a detox problem, does it? The

4-aminopyridine experience I feel was, however.

Rich wrote: Versed (midazolam) is metabolized by CYP3A4 for sure. Demerol

(meperidine) is extensively metabolized, but I haven't been able to

find out for sure which enzymes are involved. I think CYP3A4 is

involved, though. Haven't been able to find out which enzymes

process 4-aminopyridine (fampridine).

[Guest guest]

I had a colonoscopy without the drugs. It was a bit painful and I was glad when

it was over, but the fun part was that I got a very good look at my colon and

intestines on the screen. And the doc, looking like he was playing a video game

with his little controls. Just breathing deeply and trying to relax. They said

they'd never done one for someone without the drugs, but I refuse anything that

isn't for saving my life.

" Adrienne G. " <duckblossm@...> wrote: Laurel, I used hypnosis

when I had to have an endoscopy. It worked pretty well, probably would've worked

better if I could've afforded more practice sessions: deeper trance. I got

permission to take the hypnotherapist into the procedure room with me.

I don't know if there is the documentation you want, but maybe you could,

instead of educating docs, learn how to make them listen. Some just won't and I

just see those once, no matter what. The others I argue with, plead with, bully.

And put up with some of their s_ _t some of the time.

Adrienne

narcotic alternatives

Hi --

Well, my doctor's appointment that was last week had to be rescheduled

as he wasn't in that day although they had him on the schedule.

In the meantime, I had a colonoscopy followed by a barium enema

yesterday. Complete with an obvious (to me) reaction to too much

demerol which they used to put me out. When I came out of it after

the barium enema I had trouble breathing, my throat was closed, I was

beyond dizzy. But of course, my vitals were all fine.

They ended up moving me over to the ER for temporary observation where

the head of the ER (yet again) dismissed any of my comments regarding

the impact of my auto-immune disease on treatment.

In the very rare times I use codeine and/or valium, I have to take

half doses. I learned that about morphine and daladin (sp?) when I

had my diverticulitis attack in April which ended me in the hospital.

And obviously this is true for demerol.

I'm sure all of this is related to my auto-immune disease and likely

tied to my genetic profile which I haven't had done yet.

I've searched the archives but can't find anything related to my

concerns which are discussed below.

I'm looking for two bits of information:

1. Any alternative to narcotic medications that are as effective? I

don't anticipate needing any for a while but just in case.

2. Anyone have any documentation on the inconsistent reactions to

medications by people with CFS and specifically how the reactions may

not be detectable by normal means?

I am planning on meeting with the head of NAS Hospital as I'm going to

suggest an internal education program on these issues. I'm at my

tolerance level for being dismisssed. And imagine there are others

who don't realize what's going on.

Thanks,

Laurel

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Hi, .

I think there are two ways these detox problems can go.

One is that if there is an upregulation in a Phase I enzyme that

metabolizes a drug, it can produce a product that is more toxic (a

so-called reactive intemediate) at a faster rate than normal, so

that the Phase II enzymes cannot keep up and it rises to to high a

concentration, producing toxic effects. This is the situation with

the so-called " pathological detoxifiers. " Phase I is often called

biotransformation or bioactivation.

The other situation is when the main enzyme that usually detoxifies

the drug is downregulated or totally missing. In that case, the

drug itself can rise to higher concentrations and stay in the body

longer, and the person will feel stronger and longer effects for a

standard dose than other people would. For example, CYP2D6 is

totally absent in about 5% of the population.

So it really depends on which is going on.

Rich

Versed (midazolam) is metabolized by CYP3A4 for sure.

Demerol

> (meperidine) is extensively metabolized, but I haven't been able to

> find out for sure which enzymes are involved. I think CYP3A4 is

> involved, though. Haven't been able to find out which enzymes

> process 4-aminopyridine (fampridine).

>

>

>

[Guest guest]

Thanks for the detox info, Rich, I should have understood that it

could be either the initial substance or an intermediate metabolite

that causes a problem, and that certainly does complicate it, adding

perhaps many more substances that. If I take your other comments

correctly, the Yasko tests may be needed even if the glutathione

status appears ok on the red blood cell glutathione test. Sounds like

one really needs the Yasko panel, the Genovations Detox panel,

organic acids (whose?) and maybe more. I have a big 'jar' of whey

again, plus sublingual reduced glutathione and am going to try

stuffing myself with that to see if I get any positive or negative

reaction. Any idea on the quantity one should try per day to 'get' something?

[Guest guest]

Hi, .

If you're considering getting some testing done, I would suggest that

you start with an organic acids test from

http://www.greatplainslaboratory.com or a metabolic analysis panel

from http://gsdl.com as the first test, and see what the results look

like. I think that one or the other of these two tests (they're

similar) is the most likely to give you a clue of what's going on.

These tests cover a lot of ground, and I think that's the best type of

test to run for a case like yours, which doesn't seem to be like most

of the others. If you end up getting the Yasko panel, this test will

complement it, so it wouldn't be wasted.

On the " undenatured " or native whey protein products, I usually

suggest starting with a small dose, unless you know you can tolerate

them. If you can, then going up to a dose of 20 grams per day should

give you a pretty good challenge.

Rich

>

> Thanks for the detox info, Rich, I should have understood that it

> could be either the initial substance or an intermediate metabolite

> that causes a problem, and that certainly does complicate it, adding

> perhaps many more substances that. If I take your other comments

> correctly, the Yasko tests may be needed even if the glutathione

> status appears ok on the red blood cell glutathione test. Sounds

like

> one really needs the Yasko panel, the Genovations Detox panel,

> organic acids (whose?) and maybe more. I have a big 'jar' of whey

> again, plus sublingual reduced glutathione and am going to try

> stuffing myself with that to see if I get any positive or negative

> reaction. Any idea on the quantity one should try per day to 'get'

something?

>