First posting to the group for my Father with EF

[Guest guest]

Hello to everyone in the forum. This is my first post and I'd like

to start by saying thank you for making this resource available. My name

is Mike Haynes and I'm writing on behalf of my father Bob Haynes who

has eye problems and has a hard time seeing the computer screen.

Here's my father's story. Up until two years ago my father was

an active, retired engineer, 77 years old and living here in the

Nashville, Tennessee area where my brother and I also live. He has had

various eye problems for many years, cornea transplant and glaucoma, but

was in relatively good health. He had testicular cancer many years ago

and lost the use of one kidney due to the radiation, but as I said all

in all he and my Mother traveled and enjoyed an active life.

Starting in December of 2006 he noticed a rough patch of skin on his

stomach, hard and red. I'm sure many of you know where this is

going. By April of 2007 he had lost 35lbs, been to numerous doctors and

finally was diagnosed with Eosinophillic Fascitis which appears to in

many ways closely resemble Scleroderma, but with no Raynauds syndrome

and no organ involvement. He tested positive for very high levels of

eosinophils in his blood as well as in a skin biopsy. This was diagnosed

at St hospital here in Nashville and confirmed by the

dermatologist and rheumatologist that treated my father.

At that point he started a treat a regimen of Plaquenil and increasing

doses of Prednisone. While the Prednisone seemed to boost his weight the

disease did not back off. He then added Methotrexate to the mix. This

also had no affect on the disease. I should note that his eosinophil

counts did go to zero, but that didn't stop the symptoms or

progression of the disease. He had to go off the Prednisone because it

was seriously affecting his eyes and he also cannot take NSAIDs because

they might damage his remaining kidney. Other immune suppressive drugs

were ruled out becasue of possible kidney problems. A few months ago he

decided to stop taking it all because it wasnt helping.

Many of you know what his life is like now. He can barely walk, he's

40lbs lighter and gaunt, he has no energy, my mother rubs him with

lotions three times a day. He has lost much muscle, the disease is on

75% of his body and he takes 3 or 4 percocet a day to deal with pain.

And he keeps an amazing attitude, but that's another story.

I had read about Antibiotic Therapy and thought this might work great

for my him, because I gather that long term use of these antibiotics

will harm neither his eyes nor his remaining kidney. My father was

hospitalized for a very bad bladder infection in Fall of last year. He

went septic and was delusional for 2 or 3 days. They put him on

intravenous antibiotics daily for a week and he finally pulled through

the infection. What was interesting is that my brother and I noted that

his EF seemed to get better when he got home from the hospital. As a

matter of fact it was the least amount of pain he had had since the

disease really took hold in Spring of 2007. My father agreed. We all

thought, maybe it was the antibiotics.

So, does anyone have a recommendation for a doctor in the Nashville area

that's done antibiotic therapy? I've read about doctor's in

other parts of the country, but my father is not well enough to fly or

travel. I'm going to get some of the books to read and have read the

FAQ.

Thank you for taking the time to read this lengthy post. We are open to

any suggestions you might have and we are immensely grateful for you

input.

Mike Haynes

mycanes@... <mailto:mycanes@...>