Re: regarding vasculitis -Barb

[Guest guest]

Barb,

I just got an email from an acquaintence that I met a long time ago

on a pain forum. She told me that she was being prescribed some

antidepressant for her miagraines and then told me that she is

starting to miss work cause of the pain, but she feared the little

treatment that this place provided had convinced her was

so " special " & would be snatched from her aching arms. This is

exactly what the medical world wants. Us in fear.

I remember some of my first appointments. I thought I was so

organized, providing lab work, other doctor's reports, etc. Yet,

every time the new doctor would just shred the old doctors protocols

blaming each and every little bitty thing on the old docs. I just

couldn't figure out for the longest time why the new doc would spend

the whole first appointment ripping a new a hole in the decisions of

past doctors that didn't even matter anymore. It just puzzled me to

no end and literally stumped me.

BINGO

I finally figured out....if they could control the whole first

appointment, then Me, the patient couldn't ask them any questions

that they didn't know. They were manipulating the appointments so

that the patient couldn't get in a word edgewise. A dirty trick to

milk the insurance carriers and still a good six months would pass

without any definitive dx or protocols or anything. If the patient

starts getting ansy, just start manipulation tatics again. I could

see it in black and white. How about you?

Am I way off base here or does this happen to others?

Peg

-- In infections , " Barb Peck "

<egroups1bp@y...> wrote:

> Peg.

> You're not sounding negative.

> Considering what you're facing- I think you're sounding realistic.

> I know what it's like to be told a Dr. doesn't want the case

(because

> it's too complicated - or the Dr.s has a bias - or they're paying

you

> lip-service, and charging for it).

> Barb

>

>

>

>

> >

> > I apologize for sounding off, and so negative to boot......that

was

> > not my intention. I've been struggling for all month and running

a

> > fever for a week. All of the doctor's I have seen are a good

three

> > months from an appointment, they tell me to go to the er if I

feel

> I

> > need to. I guess I'm kind of testy today, cause I'm having a hard

> > time deciding. If I dont have an infection, I will once I step

> into

> > the ER. My upper back is in a lot of pain, lung area is full of

> > congestion

> >

> > The ID doctor who treated me for the MRSA back this winter says

he

> > will only be my doctor if I get off all narcotic pain

medications.

> > But the pain doctor says to tell him to go fly a kite. I can't

> cause

> > it is too hard to get ID doctors who will take me. Yet, pain is a

> > major component of all three diseases that I have.

> > Lack of brain oxygen =pain

> > Producing no cortisol = pain

> > immunoldeficiency =pain

> >

> > If I didn't hurt so much I'd be mad about it, but the pain doctor

> > wants to put in a morphine pump, I guess he will really dump me

> then.

> > He is a good ID doctor, I've been turned down by three others.

San

> > , is a hot bed of doctors refusing to treat patients

because

> > they were hit by a ton of legal stuff. Even Dr. H (arvy) lives in

> San

> > , but practices in Houston.

> >

> > Get this, one neurologist refused to treat me because I was a

> patient

> > of Dr. H(arvy). That was the one that said why would a doc want

to

> > take you as a patient speech, so I didn't lose much as I blew her

> > off.

> >

> > I have a great pain doctor, but she admitted that she didnt want

to

> > take me, but she said that if she didn't she knew that no body

else

> > in town would. She felt responsible enough for all those doctors

> who

> > don't .......I'm so grateful I've got her.

> >

> > I apolgize for my negative tone, I appreciate the information and

> > support that everyone gives here, considering my participation is

> so

> > little.

> >

> > Thank you

> > Peg

[Guest guest]

Hi Peg,

You are not off base, and it is happening to at least one other--me. I am having a very tough go of it. AFAIK I do not have lyme--no diagnosis, but don't trust tests, so could be a possibility.

I am in the middle of the doctor ring-around and the latest one, a board certified cardiologist, ordered all kinds of tests (expensive, and I had to pay) and then all he did was stare at me blankly and tell me a dozen or so times that 'You are going to die.' After a while, my temper flared and I said, 'Yes I am going to die. And so are you. And so is every person on this planet. None of us are getting out of here alive. So what we are talking about now is where and when. Are you ready to talk about 'when?' He wasn't. And he STILL would not explain the results of all those expensive tests.

So I am still suffering tremendously (minus all pain meds except occasional aspirin due to liver & kidney problems), and uncertain even what KIND of doctor to try next. For the first time in 15 years of ME/CFS, I am having horrible GI problems (don't know what started that), my blood pressure is out-of-sight high. I know my thryoid is off (Hashimoto's) and my adrenal glands are not working properly. So do I find an internist or an endocrinologist or try another cardiologist or what?

I am very thankful for the one excellent family practice doctor I have. I do not believe I would have survived to this point without him. But he tells me now that the problems I have are beyond his expertise. He is the one who suggested a cardiologist, but he refused to recommend a particular one. He says he has had too many bad reports from other patients to whom he has given particular recommendations.

YOU ARE NOT ALONE, PEG! I'LL BET THERE ARE A LOT OF US SUFFERING FROM THE 'DOCTOR GAMES.'

Wishing you all the best,

[infections] Re: regarding vasculitis -Barb

Barb,I just got an email from an acquaintence that I met a long time ago on a pain forum. She told me that she was being prescribed some antidepressant for her miagraines and then told me that she is starting to miss work cause of the pain, but she feared the little treatment that this place provided had convinced her was so "special" & would be snatched from her aching arms. This is exactly what the medical world wants. Us in fear. I remember some of my first appointments. I thought I was so organized, providing lab work, other doctor's reports, etc. Yet, every time the new doctor would just shred the old doctors protocols blaming each and every little bitty thing on the old docs. I just couldn't figure out for the longest time why the new doc would spend the whole first appointment ripping a new a hole in the decisions of past doctors that didn't even matter anymore. It just puzzled me to no end and literally stumped me.BINGOI finally figured out....if they could control the whole first appointment, then Me, the patient couldn't ask them any questions that they didn't know. They were manipulating the appointments so that the patient couldn't get in a word edgewise. A dirty trick to milk the insurance carriers and still a good six months would pass without any definitive dx or protocols or anything. If the patient starts getting ansy, just start manipulation tatics again. I could see it in black and white. How about you?Am I way off base here or does this happen to others?Peg-- In infections , "Barb Peck" <egroups1bp@y...> wrote:> Peg.> You're not sounding negative.> Considering what you're facing- I think you're sounding realistic.> I know what it's like to be told a Dr. doesn't want the case (because > it's too complicated - or the Dr.s has a bias - or they're paying you > lip-service, and charging for it).> Barb> > > > > > > > I apologize for sounding off, and so negative to boot......that was > > not my intention. I've been struggling for all month and running a > > fever for a week. All of the doctor's I have seen are a good three > > months from an appointment, they tell me to go to the er if I feel > I > > need to. I guess I'm kind of testy today, cause I'm having a hard > > time deciding. If I dont have an infection, I will once I step > into > > the ER. My upper back is in a lot of pain, lung area is full of > > congestion> > > > The ID doctor who treated me for the MRSA back this winter says he > > will only be my doctor if I get off all narcotic pain medications. > > But the pain doctor says to tell him to go fly a kite. I can't > cause > > it is too hard to get ID doctors who will take me. Yet, pain is a > > major component of all three diseases that I have.> > Lack of brain oxygen =pain > > Producing no cortisol = pain > > immunoldeficiency =pain> > > > If I didn't hurt so much I'd be mad about it, but the pain doctor > > wants to put in a morphine pump, I guess he will really dump me > then. > > He is a good ID doctor, I've been turned down by three others. San > > , is a hot bed of doctors refusing to treat patients because > > they were hit by a ton of legal stuff. Even Dr. H (arvy) lives in > San > > , but practices in Houston. > > > > Get this, one neurologist refused to treat me because I was a > patient > > of Dr. H(arvy). That was the one that said why would a doc want to > > take you as a patient speech, so I didn't lose much as I blew her > > off. > > > > I have a great pain doctor, but she admitted that she didnt want to > > take me, but she said that if she didn't she knew that no body else > > in town would. She felt responsible enough for all those doctors > who > > don't .......I'm so grateful I've got her. > > > > I apolgize for my negative tone, I appreciate the information and > > support that everyone gives here, considering my participation is > so > > little.> > > > Thank you> > Peg

[Guest guest]

Yeah, me three. It's a stacked deck and they have the advantage. And

when you get bad treatment what can you do about it? Not pay? All

that gets you is a bad credit rating.

You guys, I can't count how many doctors I've wasted money on. Oral

Surgeons who saw me for 5 minutes at $190 a pop for nothing. Or how

many have blown me off, were condescending, scared me to death (I've

also been told that I was going to die - if I didn't follow his

instructions), or performed unnecessary breast exams (not even

kidding, sadly) and charged me a fortune to do it.

Needless to say, I'm pretty leary when it comes to docs. So now I'm

very careful before going to see a doc. I wait and see how other

people fare with them before I decide to give one a go. I am lucky

that I have a great family doc who cares, but of course he's

overbooked and it can be really hard to get past his front desk.

He's basically just trying to help me out because this illness is

beyond him too. But he has never worried about risking his neck for

me, which is pretty amazing. I just wish he weren't so incredibly

busy, and like you, I sometimes worry about his office being so busy

that it may not be as organized or sanitary as it could be. But the

fact is, he's put his practice on the line trying to help people

like me, so I will always be 1000% grateful and loyal to him.

Lanelle, You're not alone either with the Tony situation. I know at

least 3 more of us who've all had Tony talk to our doctors and get

through when we haven't been able to. We've more than once been

amazed that what he's told us to do is exactly what we needed. Those

of us who know Tony, and his motives, have a lot of faith in him. I

have more faith in him than all those educated doctors out there

who've done nothing but lighten my wallet and stress me out.

I no longer try to get the medical system to function correctly. I

either work it to my advantage or work around it. I do think we're

very fortunate to have such smart people here, and also a couple of

people who've actually achieved remission, who can help us figure

out how to design our own protocols, despite all these self serving

doctors. I think emulating Tony and Barb would get a lot more of us

well than these doctors ever will.

penny

> You are not off base, and it is happening to at least one other--

me.

> Am I way off base here or does this happen to others?

[Guest guest]

Penny:

Well- There yah go!.

When you learn that, then you

at least have a chance of getting somewhere.

None of us would be here if we were being 'cured'

by the establishment.

Barb

Penny said:

" no longer try to get the medical system to function correctly. I

either work it to my advantage or work around it. "

> Yeah, me three. It's a stacked deck and they have the advantage.

And

> when you get bad treatment what can you do about it? Not pay? All

> that gets you is a bad credit rating.

>

> You guys, I can't count how many doctors I've wasted money on. Oral

> Surgeons who saw me for 5 minutes at $190 a pop for nothing. Or how

> many have blown me off, were condescending, scared me to death

(I've

> also been told that I was going to die - if I didn't follow his

> instructions), or performed unnecessary breast exams (not even

> kidding, sadly) and charged me a fortune to do it.

>

> Needless to say, I'm pretty leary when it comes to docs. So now I'm

> very careful before going to see a doc. I wait and see how other

> people fare with them before I decide to give one a go. I am lucky

> that I have a great family doc who cares, but of course he's

> overbooked and it can be really hard to get past his front desk.

> He's basically just trying to help me out because this illness is

> beyond him too. But he has never worried about risking his neck for

> me, which is pretty amazing. I just wish he weren't so incredibly

> busy, and like you, I sometimes worry about his office being so

busy

> that it may not be as organized or sanitary as it could be. But the

> fact is, he's put his practice on the line trying to help people

> like me, so I will always be 1000% grateful and loyal to him.

>

> Lanelle, You're not alone either with the Tony situation. I know at

> least 3 more of us who've all had Tony talk to our doctors and get

> through when we haven't been able to. We've more than once been

> amazed that what he's told us to do is exactly what we needed.

Those

> of us who know Tony, and his motives, have a lot of faith in him. I

> have more faith in him than all those educated doctors out there

> who've done nothing but lighten my wallet and stress me out.

>

> I no longer try to get the medical system to function correctly. I

> either work it to my advantage or work around it. I do think we're

> very fortunate to have such smart people here, and also a couple of

> people who've actually achieved remission, who can help us figure

> out how to design our own protocols, despite all these self serving

> doctors. I think emulating Tony and Barb would get a lot more of us

> well than these doctors ever will.

>

> penny

>

>

> > You are not off base, and it is happening to at least one other--

> me.

>

>

>

> > Am I way off base here or does this happen to others?