Dave's Hidradenitis Story
Promised to Lynette... Dave's HS story...
Preface -
This is mostly aimed at the newly diagnosed gents out there, because I
am a guy, and we men are vastly outnumbered amongst the HS folks who
make noise about this Devilish disorder. We are also outnumbered in
the medical journal articles. Also, because if you are new to HS, you
are feeling VERY confused, angry, frustrated, and probably very lost
about it. Join the club. This email is for you, and the loved ones in
your life, to help them understand.
HS my way.
Mostly plain facts, but some opinions are obviously in here too.
(your experiences might not be just like mine. HS is sneaky and
tricky.).
Men are probably a much larger part of the HS patient population than
anyone knows. Why? Because men think like men. We are "macho" and all
that stuff. We don't go to doctors b'cuz we are TOUGH! We don't
complain b'cuz we are TOUGH! We get well all on our own b'cuz we are
TOUGH.
. oh yeah . NOT!!!
I am here to tell ya. that is a losing strategy if I ever tried one. and
I did try it. and I lost.. BAD! So have many other guys. But we had no
other choices for many years. Doctors had no clue what those lumps
were, or they made up dumb guesses or lies to keep us occupied and to
have something to write on prescription forms. There was no Internet
then, so we could not look up the symptoms ourselves in the Medical
Libraries of the world. or I would have done it.
I was a science nut from an early age. While in college studying to be
a Biology Teacher, many of the courses I took were pre-Med. On the
family farm, the hunting fields, or in a Lab, I have dissected (or
butchered) more animals than most men think of in a life-time. I know
physiology pretty well for a layman... But I could not diagnose HS.
I was first given the diagnosis of Hidradenitis Suppurativa in the same
year that the World Wide Web was created. 1993. Unfortunately, the Doc
was so depressed by that concept that he only whispered it to me and did
not write it down. I was still in the dark about that name until
1996-7. Around that time, I had several small (hen egg size) cysts
removed. A Urologist took those out and told me what the disorder was
called...
"Hidra .. super.what?" .. "Hidradenitis Suppurativa"
Then I went into one of my remissions. no big cysts for a year or so.
When the cysts came back, I ended up mostly unemployed, sick as a dog
with HS, and spending a LOT of time on the Net looking for jobs while
changing bandages. In '99 or 2000, I finally found the old HIDE
International group in Yahoo! I joined up. That led to me learning
more than I can ever tell about HS. It has been amazing.
Dave in Ohio -
I am 50 years old. I have had Hs for close to 40 years. I have
allergies; lost my appendix in '65 which threw me into puberty early
(hormones!); by age 16 I had more body hair than any of my male
relatives ever had (hair and HS are related in important ways); It now
looks like both sides of my family have had some degree of HS in some
individuals, so mine seems to be hereditary.
My first definite cyst - Age 9 or 10, in my right ear canal. It shut
off my hearing and balance and threatened my eardrum. Lanced and drained
in a small family doctor's office. Good results until 1994, when it
recurred. Same symptoms and treatment. Recurred again since then too.
Early HS cysts - age 12 to 23. inner thighs would develop a "rash" every
summer. Looked like acne, but refused to make a "head" or go away until
Fall. Swimming in Chlorinated pools helped.
I had regular acne and some "cystic" acne too, from age 11 to age 40.
too many "teen" years. Ugh!
First HUGE flare up - Age: 23. late summer of 1977 while on a trip out
west. My armpits went nuts and I was in bad pain for a few days. Then
it disappeared suddenly. over night.
Tried Accutane about 1988 - Age 34. I will NOT do that again. It gave
me Acne Fulminans so bad it ain't funny and then the HS hit me worse
than ever. Fortunately, I did not lose my mind. I became an occasional
recluse though. When pain got too bad, I was afraid I might lose
control and "go off" on somebody. So I hid in my home many times for
days at a time. (I don't do well with pain killers . neither do most
Doctors.)
What do I do to fight HS?
1. I try to stay healthy. If my immune system gets low, the HS
hits me hard.
2. I take Zinc and Selenium tablets to boost my skin's mineral
needs. I am conservative with those because too much Zinc can hurt you.
I stay around 20 to 30 mcg per day MAXIMUM.
3. I take a HOT SOAK BATH EVERYDAY to open the bad hair follicles
which start the HS cysts.
4. I apply Bag Balm (a cow salve) and Jason's Tea Tree salve to any
active or suspicious cysts each day after that HOT bath.
5. I drink a LOT of water. Just tap water. Nothing special.
6. I drink green tea and eat carrots (natural Vitamin A... not
toxic over-doses of retinoids like Accutane).
7. I take German Chamomile and/or St John's Wort to maintain
emotional calm needed to fight stress. I smoke tobacco, but NEVER use
alcohol to fight stress. If I have a drink, it is because I want one.
Period. I drink lightly anyway... 2 or 3 shots per month average.
8. I cannot eat tree citrus fruits or drink coffee (well, about 2
cups in 6 months), or have ANY grape wines, raw grapes, juice, or other
grape products (except raisins. weird huh?). Those "trigger" my HS into
activity.
9. I eat a LOT of roughage and yogurt to keep my intestines
healthy.
10. I keep Augmentin 1000mg (very strong antibiotic) pills around in
case I get in trouble with Staph infections. followed by more LIVE
CULTURE Yogurt to prevent dangerous dehydration!!!!
Associated HS problems -
I have had Ancanthosa Nigricans (around my arms as gray bands; lasted a
few years and went away), Plantar pustulosis (both feet; still get it),
acne vulgaris (still get a little), Acne Fulminans, all sizes of
commodomes (blackheads; still get those), MRSA (antibiotic resistant
Staph infections). All parts of me have been affected. from my right
toe to my scalp. The worst was (is) in the peri-anal areas (crotch
between the scrotum and anus). That is where my nastiest surgeries had
to be done (cut open twice). I have lanced hundreds of the less
sensitive ones myself. A proctologist had to lance/drain/pack my
pseudo-Pilonidal cyst on 2 occasions.
Pseudo? (means "false") According to the proctologist - "An HS cyst on
the top of the butt is not really a Pilonidal Cyst. It just looks like
one and occupies the same tissues."
I say - "Who cares? When I sit, it hurts really BAD!!!!"
< http://www.emedicine.com/emerg/topic771.htm > If you skip the fancy
Medical terminology you can still learn a lot there.
Today -
I have active and semi-active HS cysts older than many of the people
reading this email.scarred, cracked, and pitted like an old baseball
glove. But I survive. I am on the HS-USA Board of Trustees and on one
of the committees. I help moderate a support group. I work full time
(too doggon much!!). And I was privileged to meet some of the nicest HS
ladies in the world at the 2004 HS Rally in Nashville. (There were some
great guys there too, but none had HS.)
When I am able (in remission, mostly in Winter), I go out on dates (I'm
single), go camping in a tent, stomp around the woods, travel, practice
my Art, listen to music, go hunting, look for fossils and arrowheads, do
woodworking, and work in my yard or do my own house maintenance.
Even with HS, life is not all bad. There is hope. so please remember.
You are NOT alone!
Thanks for reading,
Dave in Ohio
Dave runs the yahoo support group for the men http://health.groups.yahoo.com/group/Hidradenitis-in-Men-Discussion/ go join and get the help you too deserve.
bravenet.com