My PG Background to Wound Care

[Guest guest]

Hi,

I thought it might be helpful if I share my wound care the way Elaine

did. I printed her messages out and my PT is very interested to read

it.

I have been going to St. ph Hospital Advanced Wound Care,

Reading, PA, whenever I have bad active eruptions (off and on since

summer 2004). The doctor who started that center and supervises it is

ph P. Cavorsi. In previous years, because I had no insurance, Dr.

C used no treatment other than basic dressing experiments. I have new

patient assement every time I return since my record gets closed each

time I go into remission. This summer, during the intake eval, I

overheard the PT explaining to students what treatments they WOULD be

doing for pain IF I had insurance. This was the first time I was

aware that treatments were available which were being withheld

(remember, I had been going for three years at this point). I quickly

let them know that, although I had no insurance, I was assessed by

the hospital business office to be elligable for 100% Cathloc

charity. So, my first PG treatments finally began this summer.

Following about eight months of extreme fatigue and frequent muscle

spasms, and signs of sinus infection, I finally progressed to the

point of having pneumonia diagnoses on July 24th. My immune system

red flags were building over the summer months and did not subside

when I recovered from pheumonia (by the end of July, without taking

any prescription drugs - just homeopathic care). I was having night

sweats. The sores in my mouth were getting worse. I had the eruption

of the sores at the hairline at the back of my neck. My arthritis was

flaring up. About the 3rd week in August, I tried a course of

Flucoizole which was medical clinic's stab in the dark to see if a

fungus was the underlying disorder for PG (some had shown up in the

lesion biopsies the previous year). If anything, the symptoms got

worse with the fluconizole, but the PG was really building up a head

of steam by then so I can " t say.

Anyway, by Sept 2, 2007, I had more active lesions at one time than

ever before - five - plus the sores in my nose and very painful white

crators in my mouth. I had been increasing my dose of Turmeric

gradually and was up to 1200-1600mg per day. The pain during the

eruption phase was much more tolerable at this point than was my

previous experience during eruption phase of other lesions. Things

were continuing to build in severity, much more swelling around my

ankle. I started trying Colchocine on Sept 4th, and this was the

beginning of not being able to walk because the pain was so severe

whenever I stood up. What I call the " 9/11, red phase " (when I am

under full attack by my immune system) of the eruption started to

settle by Sept 8 and I stopped my pain meds. This is when I began

using the homeopathic Mercurialis, topical on small, unopened areas,

and orally. September was bad and I don't have many notes for this

period. In early October, I was having trouble with a bad cold, low

fever, sore throat and swollen neck glands.

The Wound Care likes to use plastic dressings to keep the areas wet.

I always argue (fearing that it is their dressings that push me into

fungal issues as a secondary problem). In general, my body reacts to

any clothing other than cotton or wool. I don't do plastic. On 10/11

I convinced them to change to dry dressings and I realized immediate

improvement of the lesions. Wound Care (WC from now on) said to take

percocet (sp?) around the clock and keep a steady amount in my system

for the pain. Dr C has always been with me on the side of caution and

hesitation about systemic steroid treatment because of my Hodgkins

history. But he is upset by the extreme inflamation and celulitis

around the lesions. He is beginning to feel behind the eight ball

unless I find some other specialist to treat me systemically. My

homeopath added Calendula at this point (and sometime before this, I

started pulsitilla. I had never discontinued gelsemium since the

pneumonia).

This message was an intro to the detailed specifics of the WC

dressing treatments, which I would have started at this point. But my

children have just called with a movie show time and I must be off.

TBC,

Tina