Newcomer

May 9, 2001

Hi all,

I'm new to the group and just wanted to know if anyone had the following

experiences - kinda like to know there's light at the end of the tunnel.

I was diagnosed 6 weeks ago although with no flushing and a few minor

breakouts. I was given tetracycline which after two weeks brought on severe

photosensitivity, burning, skin sensitivity,flushing, mouth ulcers, breakout

of forehead and nose which had never happened before, and lots of lovely

broken veins. The metrogel burnt so I gave that up pretty quickly.

Found another derm who prescribed erythromycine. Now up to week 3 and no

obvious improvement with major pink/redness staying most of the time. Making

a bed seems to be enough to set it off.

Both consultations had me in and out within 5 minutes. Quality time methinks

not.

Third derm spent half an hour going through a range of issues and suggested

blood tests to check it wasn't drug induced lupus - which can be trigged by

tetracycline. Will check in with him next week. His response was hold off

on treatment until we work out what's what.

Is it normal for this condition to progress so rapidly 'cos I'm seriously

pissed off? Does this recede, what's the normal kick in time for

antibiotics, do they actually help the redness or not or can I expect the

current redness to be permanent? Seems somewhat dramatic for so much to

happen so quickly.

Aaaahhh. Any feedback much appreciated.

May 9, 2001

Sandy,

Many thanks for your email - it helps no end with the frustration of this

condition.

I think reading this site should be compulsory for dermatologists - but hey,

with their current attention deficit I doubt they'd get past page one.

The zits are no great drama, it's the redness that drives me mad. Finding

triggers is tricky as I can be sitting watching television and be a sudden

gorgeous burnt beetroot - Lovely colour just not me.

Anyway, I'm taking your advice and upping the water intake. Also going back

onto my gluten/lactose free diet for leaky gut syndrome with my

GP/Natropath's support. The reading I've done suggests a strong

correlation between the two and I've had leaky gut for about 15 years. My

GP thinks this will also push through the remnants of the tetracycline which

I gather can stay in the system for several weeks to a few months.

Finally managed to use Sy's oil without a reaction last night - and

doing lots of breathing/relaxation exercises which seems to help. Onwards I

guess. And again thank you.

> Re: Newcomer

>

> ,

>

> i'm new to this group too, and certainly not an expert

> on the topic- there's a lot of people in here who know

> much more than me. however, i think whats haoppening

> to you is pretty absurd.

>

> i have a really mild case of rosacea, two derms told

> me different stories - one said i was in the initial

> stages, another said i only have an aspect of the

> disorder (i took that to mean mild). anyway, the first

> derm never even looked at my face or asked me to

> remove my makeup (i have very little redness) and

> shffled me out of the office in under two minutes

> flat...that's why i went to someone else.

>

> the second one took longer, about a half hour,

> although she was bouncing in and out of the room to

> see other patients at the same time, so i understand

> your frustration with the doctors.

>

> however, it seems fair, from my experience anyway, to

> assume that your acceleration is induced by the

> medicine. i initially went on noritate, started

> flushing more than ever before, and my skin became

> irritated and burned. i transferred to metro lotion

> which has helped alot. i experience a lot of of

> photosensitivity as well, but the minimal redness i

> had to begin with is waning, and my flushing has

> improved. i have a few more zits than usual, but i

> can live with that.

>

> so from what i know, it is POSSIBLE for yours to

> accelerate on its own that rapidly, but i think you

> are right to look at the medicine as the cause. the

> medication for this disease is very trial and error -

> and several people in the group will tell you one

> thing is great, while the same caused flare ups in

> another. unfortunately, it just takes time - but it

> will get better, i promise.

>

> for now, i suggest you bide your time betwen doc

> visits with trying diligently to avoid flareups, now

> that you are having them. figure out what makes you

> heat up, relax and take things slow. drink lots of ice

> water! i drink about four liters a day. (that sounds

> almost absurd, but it really does help - for me its a

> compulsive reaction almost. i feel my face get hot and

> i drink water -- and then it starts to go down --

> definitely partly psychological). good luck with your

> doctors and keeps us posted on how everything goes.

>

> sandy

>

> __________________________________________________

>

May 9, 2001