regarding vasculitis

[Guest guest]

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.