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Hi Everyone, I just have to mention this while we are talking about Drs. Over the last 18 yrs. I can't even begin to tell you the nasty and stupid things they have done, but here is one that has always got me. I know longer have the terrible pain or extreme flares but when I did not ONE Dr. except Dr. Oliver even cared. I also had a weight poblem, and if I could of had just 10 pain pills to get me through afew really bad days would have helped me alot, but NO they won't do that, but they will give you very high doses of prednisone for pain, LIKE that is good for you??? I know it is nessasary, at times, but these idiots really don't care about the side effects which are worse than afew pain pills. Not eveyone is a addict out here. Basically I now treat myself, and that is very sad as I really need A Good AP dr. but I burned out on Drs years ago and traveling also. I have a Dr that gives me the doxycline and has kitten every once in awhile and acts like he is giveing me something I shouldn't be on. Ater 13 yrs on this treatment, which started In Washinton under Dr. Oliver, all I can say is I am more than exhausted with drs. and there EGOS and fighting for a treatmet that really does work, We NEED more educated DRs. in AP. IT really is sad the way I have had to fight, but I am still on it and I will be tell I die. Even though its just naintance I need this antibiotic. Everyone should go to Gulfwar Vets and read how there being treated for alot of the same things we have, Somehing is very wrong out here to have to fight for this treatment this hard, and to get DRs to listen. Thank you from Ohio

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Well, sometimes I think we haven't come so far from n times when

women were considered to be naturally prone to neuroses of all sorts and

routinely sent away by their husbands or doctors to sanatoriums for a little

rest (or a loooooong one) if they didn't spout the party line or play the

game.

The thing is, you're really blindsided when you come up against one of these

jerks, because most of the time you think, geez, this is 2001, we've come a

little farther than that. People don't have those attitudes anymore....DO

they?

(I think people of color who encounter racism must have a similar

experience, and maybe this is why there is such a disparity in how whites

and blacks see the problem, i.e., most white folks think, well this is 2001,

we've come a little farther than that. Black folks know better, from

experiences that are sometimes analagous to our problems with maddeningly

condescending and idotic doctors.)

Anyway, many of us are not able to respond appropriately at the time because

part of us just can't believe we have been treated that way.

I am still furious with the rheumatologist who refused to examine my foot

when I told him I thought I might have a rheumatoid nodule.

" You don't have rheumatoid arthritis, " he snapped. " The pain in your feet

has nothing to do with palindromic rheumatism. " (his diagnosis of my

problem, which he felt he had treated, so if the pain was continuing it must

be something else!) " It's not an imflammatory problem - it's because of the

way you walk. You need to see a podiatrist. " He did not even look at my

feet, which were painful at the time (probably why I was walking funny!)

because " I couldn't find anything wrong with them the last time examined

them. " (three months previously). When I objected to this, he stood up and

ended the interview. He was also ROYALLY pissed because I told him I had

been on the internet trying to get information. That's the biggest sin - not

allowing them to be the omnipotent source of information.

My reaction that day was to wander out to the receptionist, stunned. I even

made another appointment - " 6 months, that's when he wants to see you. " This

after telling him that I couldn't even walk some days and it was getting

worse. By the time I got home I was furious, went tearing throught he yellow

pages looking for another rheumy. ANYBODY had to be better than him.

I have ignored requests for payment for that last appointment with Mr.

Arrogant. I have no insurance to cover it and really resent the expense when

we are struggling to pay our bills as it is. But since it will probably come

up and bite me in the rear (affect my credit, in other words) I have written

a letter to send with payment at some point when it isn't a hardship for us

to pay. (I had to revise it numerous time to tone it down.)

Wow! I can't believe how angry I am after all this time!

The happy ending is that the new rheumatologist (who diagnosed rheumatod

arthritis) put me on minocycline as sort of an experiment, even though he is

not what you'd call an AP proponent. And, in the course of his thorough

exam, depression and fatigue were acknowleged as being part and parcel of

this disease.

There are some decent, competent practitioners out there, even if sometimes

trying to find one feels like looking for a needle in a haystack.

Jean

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-

Isn't it awful? I was crying this week, part from all the pain, and part

from the frustration of these idiot drs... I am also fed up with being

treated like a drug addict because I want some pain relief. They don't take

the time to listen, or find out just what kind of person we are... and I am

also fed up with the ol have you tried Prozac, or Elavil.... I want to take

a baseball bat, hit them in the shins, and then say, now, now there, what

you need is some prozac....

Now I admit, I'm a bit angry, too. I know to try all my might to make sure I

don't cry on the phone or in the office w any of my drs (oh,oh,she needs a

shrink...) I don't tell them a med is too risky for me... like the one that

might give me irreversable eye color perception (Lord, I'm an artist, plus a

human being who LIKES my vision, blurry as it is).. so I learn that the best

way is to tell them I tried it, gave me (pick a side effect listed). (look

what happened now that I was honest about my concerns about Flagyl!!) Saves

me some torment because I've been thru every side effect in the book,

anyway. And when I ask for pain meds (oh, oh, send her to our pain

clinic.... more $ for us, and THEY can deal with the annoying never ending

complaints of PAIN...) I make sure I overemphasize that I dont use " too "

much.. which puts me btwn a rock & a hard place. If I tell them how much I

really need... I'd have enough to not worry about running out, but then

they'll treat me like an addict. If I say only a few, I get a script for 20

pills I treat like gold, don't use much, and I don't really get any relief

fr the pain. Only a small minute percentage of patients ever become addicted

to narcotic pain relievers. It is so frustrating.

I am trying to convince this primary care I have to prescribe the AP, but I

really don't have much hope.

I found a website that is very good, the " American Society for Action on

Pain "

http://www.widomaker.com/~skipb/skiphome.htm.html

take care-

Lyn

===================

>

> Hi Everyone, I just have to mention this while we are talking about Drs.

>Over the last 18 yrs. I can't even begin to tell you the nasty and stupid

>things they have done, but here is one that has always got me. I know

>longer

>have the terrible pain or extreme flares but when I did not ONE Dr. except

>Dr. Oliver even cared. I also had a weight poblem, and if I could of had

>just

>10 pain pills to get me through afew really bad days would have helped me

>alot, but NO they won't do that, but they will give you very high doses of

>prednisone for pain, LIKE that is good for you??? I know it is nessasary,

>at

>times, but these idiots really don't care about the side effects which are

>worse than afew pain pills. Not eveyone is a addict out here. Basically I

>now

>treat myself, and that is very sad as I really need A Good AP dr. but I

>burned out on Drs years ago and traveling also. I have a Dr that gives me

>the

>doxycline and has kitten every once in awhile and acts like he is giveing

>me

>something I shouldn't be on. Ater 13 yrs on this treatment, which started

>In Washinton under Dr. Oliver, all I can say is I am more than exhausted

>with

>drs. and there EGOS and fighting for a treatmet that really does work, We

>NEED more educated DRs. in AP. IT really is sad the way I have had to

>fight,

>but I am still on it and I will be tell I die. Even though its just

>naintance

>I need this antibiotic. Everyone should go to Gulfwar Vets and read how

>there

>being treated for alot of the same things we have, Somehing is very wrong

>out

>here to have to fight for this treatment this hard, and to get DRs to

>listen.

>Thank you from Ohio

_________________________________________________________________

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  • 9 years later...

Audrey

The test results showed that you're not over medicated or anything on the NT and

I'd keeo on with that, so all your ill health must be dowm to the lack of

adrenal function. Judging by your appaling results from the synacthen test,

you probably need quite a bit more cortisone or prednisolone, which you take

once a day and which raises the overall levels of cortisone. BUT... I'm not

a doctor, I'm just applying judgement and common sense, based on what I've

learnt. (If only your doc would do this)

I think you should go over to the adrenal forum, post your synacthecen results

and the amount of NT you're on, along with the results and see what Val thinks

about dosing amounts. It will give you some idea of how much you ought to be

prescribed. Here's the link for the adrenal forum:

NaturalThyroidHormonesADRENALS/

The feeling better the day before a cold, might be that your adrenals manage to

put out a bit more cortisone to help you fight the cold, but then when it takes

over it uses up all the cortisone, so you feel rubbish. If you take HC it's

common to up the dose when faced with extra stress, like an illness or

infection.

Your comments about feeling well with the heart op as large doses of HC were

given makes lots of sense, but a heart op is a bit of a drastic way to get more

HC!!

Get a dosing amount off of Val if you can.....

xx (Galathea)

>

> Dear ,

>

> I did suspect this doctor was out of his depth and was just trying to placate

an old woman.

> You asked what medication I take. I take NT two and a half grains a day and

building plus 20 mgs HC now and this is helping and I am not feeling as ill as I

was earlier when we all went into panic mode! lol.

>

> However, today I have another slight cold and once again everything is sore

and energy levels down again Please could you explain why this is and also why I

get a 'better' day the day before the cold breaks out?

> This stage lasted for a couple of weeks and then down down, down I went and

I guess it was as the HC was coming out of my body. That is the only time in

twelve years that a sense of wellness came upon me. Does this make sense?

>

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Hi , Audrey is seeing Dr Theodora Mantzourani this week,

so I personally think it is better to wait to see what she recommends before

going to see what Val would recommend re dosing with HC. Audrey, are you taking

huge doses of vitamin C to help combat these colds?

Luv - Sheila

I think you should go over to the adrenal forum, post your synacthecen results

and the amount of NT you're on, along with the results and see what Val thinks

about dosing amounts. It will give you some idea of how much you ought to be

prescribed. Here's the link for the adrenal forum:

NaturalThyroidHormonesADRENALS/

The feeling better the day before a cold, might be that your adrenals manage to

put out a bit more cortisone to help you fight the cold, but then when it takes

over it uses up all the cortisone, so you feel rubbish. If you take HC it's

common to up the dose when faced with extra stress, like an illness or

infection.

Your comments about feeling well with the heart op as large doses of HC were

given makes lots of sense, but a heart op is a bit of a drastic way to get more

HC!!

Get a dosing amount off of Val if you can.....

xx (Galathea)

>

> Dear ,

>

> I did suspect this doctor was out of his depth and was just trying to

placate an old woman.

> You asked what medication I take. I take NT two and a half grains a day

and building plus 20 mgs HC now and this is helping and I am not feeling as ill

as I was earlier when we all went into panic mode! lol.

>

> However, today I have another slight cold and once again everything is

sore and energy levels down again Please could you explain why this is and also

why I get a 'better' day the day before the cold breaks out?

> This stage lasted for a couple of weeks and then down down, down I went

and I guess it was as the HC was coming out of my body. That is the only time

in twelve years that a sense of wellness came upon me. Does this make sense?

>

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