Re: regarding vasculitis

[Guest guest]

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]

Peg;

Good god woman you've been thru and are *still* in hell.

Unfortunately your story is quite familiar. IMO, it is SO much worse

when friends and family take the same attitude as the Drs... My first

time around with that attitude ending in divorce for me... and

alienation of about 80% of my married friends.. I swear if you don't

look sick- people just think - how can you be?-

How can they not see these as being connected?

It's pathetic.

Barb

> Regarding vasculitis.

>

> I was diagnosed with Vasculitis years before I received any of the

> other three rare disease dx. That I have since received.

> Here is how it began.

> I started having these spasms on one side of my head. It would

start

> at the nape of my neck and electrically walk up the back of my head

> before stopping at the crown. It ONLY affected one side, which is a

> very weird feeling to be elctrically plugged in but only on one

side.

> This was not painful, instead it was maddening to get this

> electrically charged buzzing on one side of the skull about three

per

> hour. They would last only a minute. A very long minute.

> I went from neurologist to immunologists, to psychiatrist, to ID

> doctor. Everyone turned me away saying that it was nothing. Some

said

> it was allergies, some said it was all in my head.....Right !!! but

> would refuse to treat it , saying to ignore it and it would go away.

> The only treatment I specifically received was from an immunologist

> who had a prescription compounded for me, called " Cyclandelate " 400

> mg capsule. So, did the script work? The jury is still out. As

luck

> would have it, both times that these electrical spasms started I

> happened to start both the Cyclandelate and Zithromax at the same

> time. But within 30 days after starting both of those scripts, the

> spasms have diminished to about two per day.

> I put up with those spasms for two years from 2002 until 2004 when

> simultaneously this immunologists prescribed this compound at the

> same time Dr. Harvey started me on zithromax for Lyme. It was the

> first relief after about a month that I had seen in two years so I

> wasn't going to question which med did the trick.

> I thought by summer that the spasms were gone for good. But this

past

> winter when I contracted an MRSA, the spasms came back. Once the IV

> vancomyacin was through I started back on the zithromax, and once

> again simultaneously the Cyclandelate was started again as even the

> doctor didn't want to wait to see what worked and what didn't. Now

> about three months later, I'm down to about one of these spasms per

> day. I was getting desperate this time, as the spasms took on a

> burning component this time around.

> I got the MRSA from the IV site that I was receiveing the Lyme

> treatment for. When Dr. Harvey instantly retired, he left without

> instructions on what to do with the protocol.

> The doctor taking over for him declared me to be lyme free as she

> stated that my positive blood tests for lyme was not from an

> accredited lab. As Bowen is a research lab, I had no ground to

stand

> on. But she wanted to use the port to administer IVIG as I am

primary

> immune deficiency. I think I got the MRSA from the home health

care

> nurse as she later claimed that all of her patients had MRSA's at

the

> same time.

> So were these spasms from infectiouns or from vasculitis?

>

> Here is the whole illness in a nutshell:

>

> I have three rare diseases -- Four if you count Lyme.

>

> 1. Immune deficiency - IgG deficient since 1999. That was my first

> diagnosis.plus hypogammaglobulemnia, deficient albumin and protein.

>

>

> 2. Endocrine shutdown. Dr. Shoemaker dx me in 2003 with less

> than .01 of cortisol , no ACTH production, no aldersterone

> production, no DHEA production no testosterone, no , none, nada of

> any endocrine hormones. Dr. Shoemaker stated that he had never seen

a

> case as this where the entire endocrine system was as if had been

> attacked and left for naught. Wiped clean of any ability to

> repproduce any hormones necessary to live. Now I officially am

> classified as s Disease.

>

>

> 3. Central Sleep Apnea – very rare disease supposedly that is told

> to me to be lesions on the brainstem. Am having extreme difficulty

> finding a doctor knowledgeable in this field. I believe that the

> reason this is qualified as rare is because the tests are not given

> to enough lyme or other neuro infectious disease people. I have

more

> questions than answers. I have broached the subject of meningitis

or

> chonic meningitis to neurologists and been laughted out the office.

I

> think they laugh me out just because they don't know the answers

and

> are too embarrassed to tell me so. Otherwise they tell me to put my

> affairs in order. I am already six months alive longer than they

said

> I would be. In Jan 2005 they only gave me six months. (Except for

Dr.

> Harvey, he started the Lyme treatment.)

> I ask......isn't the hypothalamus part of the brain stem,

officially.

> I've since learned that doctors use the word lesion to qualify any

> bump, burn, tear, twist or zit........ And the brainstem is a big

> place.

> Anyway, I have lab work that proves each disease, so no one

questions

> the validity of my illnesses like they did in the beginning. I lost

> two years to the depression diagnsosis.

>

> But the part that scares me every night is that Central Sleep apnea

> as severe as mine it probably as rare as they say. True - I do not

> breathe for 40 minutes out of every 60 minutes. I had over 1250

> apneas in one night of sleep. I stopped breathing for more than

20

> seconds over 140 times per hour.

> They paraded me for all kinds of labs , the VA hospital until I

just

> got tired of being viewed as a freak. Showing off the miraculous

> woman who has managed to stay alive.

>

> Other than the sleep study, the only other tests are cat scans and

> MRI, which is fine. But I can't get around that stop breathing that

I

> do. I'm trying real hard on the BiPap but no sleep center wants to

> treat me. I'm left to ordering masks online cause no one will

> consider taking me as a patient. One neurologist told me, " Who

would

> want to take you on as a patient, when there is no treatment and no

> hope for recovery. What doctor wants a patient that won't be around

> in six months. There isn't even any research going on for central

> sleep apena because only stroke patients get it and they die

quickly

> anyway. My first and last visit to that doctor. She was even

laughing

> when she said all that. I was devestated.

> I am also now faced with a screwed up circadium rhythm, which is

> driving me bonkers. Between the ritilan and the adderall, I still

> fall asleep within 30 seconds of sitting down. I've fallen alseep

on

> the toilet, and even for two hours standing in front of the

> refrigerator. I am fighting desperately to live, but honestly dont

> know why.

>

> Here is the concluding screw all......NO doctor will admit that any

> of these diseases has anything to do with the other disease in the

> group. All doctors have claimed that all four/three rare diseases

> are completely separate and have absolutely nothing to do with each

> other. (with exception, Dr. Harvey, now retired said they were all

> connected)

> Do you know what has been worse than receiving these diagnoses?

> Realizing that I am my only advocate because for the most part

family

> and friends think I've made it all up. Nobody to research for me,

> read for me, or even to think for me when my brain is mush. No one

to

> call doctors for me either.

>

> Ignorance.......all I can say is " Ignoramous, each and every one. "

>

> Who would make all of this up just for sympathy? I have not left

the

> house in months except for three doctors visits. My sister said

that

> if it gets bad enough, eventually I'll get a life and forget this

> farce.

[Guest guest]

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]

Peg

How you as far as getting treatment that you want? I would

definately push for cephazolin for a test run I think it may have a

greatr impact on some of your staphs. The MRSA colonisation sounds

like part of the disease as opposed to a contracted infection from

an IV line.Many of the samples I get have staph areus I also think I

spotted yours with a staph areus as one of the organisms.You gotta

find a drug combination that makes you feel better!!! I still feel

attacking bacteria correctly is so important, doing vanco IV and not

feeling great tells me your major infection ain't being adressed.At

least try cephazolin and let's see how you feel.Lanelle just doing

antibiotics MEANS NOTHING, you actually end up with a bigger

infection often, so don't be mislead by bad drug choices.

tony

>

> 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]

Lanelle,

Hey girl, I admire the fact that you haven't given up and are still

here fighting, considering. And also it's good news about the

zithromax seeming to help some. Every little thing we can put in the

win column is something to celebrate.

I guess I don't allow myself to think about how our families are

AWOL in these situations anymore, or worse, how they side with the

doctors who say it's psychiatric. If I do, I end up thinking things

I'd rather not be thinking, either negative towards them, or

negative towards myself for being negative towards them. As Tony

always says, just stay away from everything that stresses you out,

especially people, as stress is the last thing you need for your

recovery. And I agree with him. I don't much talk about my illness

with people who aren't also sick, because it's not satisfying in the

least bit. I always end up feeling stressed, trying to explain why

some amazing supplement or chiropractor probably isn't the answer

for me, or defending why I need antibiotics. The downside is I've

found myself more and more isolated. I recently had a birthday, and

no one remembered (except my kids). :-) But you know what? I wasn't

really bummed. I haven't exactly had the energy to maintain strong

ties and it's just easier to not deal with people than try to

justify everything to people who don't get it.

By the way, I've been meaning to ask. Do you remember Barb

(heliotrope), the pharmacist?

Now there's an amazing person. So sick she can only speak with some

kind of mechanical assistance. Flat on her back all the time, can't

take care of herself at all and yet somehow she maintains such a

positive attitude. I've been thinking about her a lot lately, and

haven't heard from her in ages. Can't find her address. Have you

seen her on any of the forums? I'm a bit concerned and hope she's

okay. She was so sick, but always inspired me so much through her

positive attitude and sharp mind.

penny

My sister said

> that

> > if it gets bad enough, eventually I'll get a life and forget

this

> > farce.