--- In rosacea-support@yahoogroups.com, "millezax" <millezax@y...> wrote:
>
>
> Hi Dr. Young,
>
> I wanted to thank you for sharing your experience with me and all who
> replied. I am new to this forum and trying to figure out how to
> reply to messages already posted. I hit the reply button and it
> says "message has been sent" but I cannot find it anywhere. I can be
> a bit computer illiterate at times:) Do you know what I am doing
> wrong?
>
> Anyway, thank you for your reply. I really thought I was all alone
> with these burning sensations. You mentioned that you rarely flush
> any longer. When your left side is burning does it ever get red,
> hot, and tight followed by the inflammatory bumps of rosacea? Mines
> does this often but it can also look pale and be burning like crazy!
> Mine generally kicks in in the am and last like yours does. I do have
> days where it doesn't burn at all, do you? So far, I have found mine
> to be worse in the summer months as well though this is only my 2nd
> year with it. I actually had a period of time last Nov. through Feb.
> where it felt completely normal except for one or two days. I was so
> excited and thought it had gone away only to have it return in
> March. So I am waiting to see what this fall and winter will bring.
>
> I also have seborrheic dermatitis which tends to burn too so
> sometimes I am not sure which one is acting up. This had been so
> frustrating and stressful to say the least which I know is not good
> for rosacea in general. I have days where I just don't want to live
> this way. How have you coped with it all? It really rules my life.
> As you said, it can get pretty unbearable making it hard to
> concentrate on work and everyday living. If the tiniest bit of sun
> hits that side of my face it sets it off as well as a constant breeze
> but I don't have to do anything for it to get started. Do you have
> this at all?
>
> I have already set up an appt. with a neurologist though I feel there
> is no quick fix for whatever this is. I am not a person who likes to
> take meds. I am chemical sensitive and don't tolerate meds. very
> well. Though I may give neurontin a try but even then I don't want
> to be on something forever.
>
> Are you on any oral or topical meds for your rosacea? I do take
> antibiotics because I get the papules with mine. I used to use
> noritate successfully but can't use it on the left side anymore. It
> seems any topical burns the heck out of it. I can use the vita oil
> and complex 15 without any burning though.
>
> I am sorry that you are going through this too but it somehow helps
> to know that I am not alone. I haven't come across many people who
> have these chronic burning sensations. Thanks again for responding
> and I hope we can keep in touch.
>
> Sincerely,
> Patti


Hello Patti,

Thank you for the reply and sharing a little more of your stuggles.
Hopefully through this board you will realize that you are not alone
in these stuggles. Although many here have different presentations
and degrees of rosacea. So, some symptoms will be similar and others
will not, and a treatment which works for one might not for another.
That is one the frustrating things about this disease.
Not everyone has the neural burning component of this disease like we
do. And those that do not might disregard our discussion of these
symptoms as trival and overemphasized, but I can assure you that
myself nor anyone else who has experienced these symptoms to any
moderated degree would cast a stone at one who brought these
complaints to the table. For at there maximal intensity they can
totally paralyze a person on the spot from doing any task at hand at
any moment of the day.
So yes, myself and many others on this board can sympathize with you.
You asked about flushing. I did not mean that I do not flush at all.
What I meant was that I can control my environment when my sympathetic
nervous system is at its peak in a way that will minimize or eliminate
the neural component from effecting the vessel diameter. But that,
for myself personally, does not eliminate the neural pain. It has to
disapate on its own, which is sometimes 30 minutes or sometimes 6
hours. The bodies peak thermal output or metabolic rate is in the
afternoon for the vast majarity of people and this is why the neural
pain is the worst then. I run my own hospital and stay in the surgery
area a lot of the day and can control the temperature. In the morning
I can handle 80 degree temps and not have flushing or pain, but it
would cause severe pain if I where subjected to that in the afternoon.
I have to have it around 68 or 69 degrees during that time,
especially in the summer.
This has not always been this way, I endured 4 years of severe
flushing to even the most mild environmental and food triggers.
During this time I would flush severly in the afternoon for hours no
matter what tempurature I kept the room.
But now there are weeks and months where I do not flush at all, but
only because I can control my environment and have made some much
needed lifestyle and treatment changes. Although the neural burning
is always there in the afternoons in either a mild, moderate or severe
intensity.
I do not get the papules though, even when I do flush.
I do have seb. dermatitis around my ears and on my chest. This for
me, only itches, it does not burn unless I get hot from exercise.
Although it also is controled now since I have made certain changes.
You commented about the wind or sun hurting during these times of
sensitivity and you are correct they both feel like they are cutting
you skin open. They can either trigger or dramatically intensify the
neural pain.

I also have moderate ocular rosacea, and Raynauds disease which really
effects the circulation to my hands and feet.

I will share with you what has helped me increase my threshold of this
neural and vascular sensitivity in hopes that it might help in some
capacity.

1.)I started making myself get at least 6.5 hours if not 7.5 hours of
sleep a night. There is no way to tell you how much this help my
sympathetic nervous system recouperate and down regulate.
I am not perfect in this but my body really tells me when I did not
get enough that night.

2.)I started cutting out refined carbs, excessive sugar, hydrogenated
fats from my diet. I never have been a junk food eater because of all
my years of bodybuilding, but tightening up in this regard has made a
difference. I eat a lot of vegetables, and beans of all types, with
lean protein, chicken, fish, eggs, and some red meat. And almost all
my fat intake is olive oil, coconut oil, or pure butter(not
margarine). My personal opinion is that trans-fats are a death wish,
and I believe the scientific literature backs that up. I think these
good fats have benefited the epidermis profoundly and helped to
minimize my seb dermatitis and blunted the vascular response. Some
people have said that diet does not effect there symptoms, but it has
benefited mine. I try to eat a light lunch though, so as to minimize
the thermic effects of my peak metabolic output in the afternoon.

3.)I walk 1.5 hours a night (I believe this is extremely important in
helping the immune system function properely).

4.)I started using a water filter on my shower and faucet to minimize
the chlorine content.

4.)I started using Plexion twice daily

5.)I started using Noritate twice daily

6.)I started using Zinco(this has acted as a great barrier from all of
my worst triggers.)

7.)I started taking doxycycline 20 milligrams twice daily.

I cannot tell you which of these has benefited me the most, but I
think they all have shared in maintaining my sensitivity to a minimum
for some time now. I will say though that doxycycline does have a
strong immunomodulary effect and I would really encourage you to try
this for 30 day trial just to see if this would help. I have actually
start using doxy in some of my chemotherapy protocols, at higher
doses, to treat some types of neoplastic diseases, due to this effect
and also for its anti-angiogenic and anti-metastatic effects. Do not
worry through at this low dose there in very minimal potential for any
negative effects. Still do not take it to late at night though do the
gastromucosal erosive potential.

I think it is imperative as Geoffrey said, that you break the neural
sensitivity cycle which you are in, so that you can then maintain on
some type of normal regeme. Any one, or all of the drugs and
therapies which we discussed in the first post might be worthwhile to
try, to do this.

Just remember that you have to find what works for you.
I am sure that there is something I have said, that someone out there
is disagreeing with right now. Please realize this is just my opinion
and what has worked for me. Everyone else, please do not email me
with disagreements.

Patti, this is an emotionally and physically hard disease to deal with
and it is not easy sometimes to make it through each day when it is at
its worst, so just realize you are not alone.

I am truly sorry you are going through this time now though and will
pray that you have the discernement to find what will help pull you
out over these next months and years.

I will leave you with a little encouraging fact though.
I truly believe that within 3-5 years this disease will be dead.
There are several of us working right now on making sure this
prediction comes into reality, so hang in there.

Sincerely,

Dr. Young