On Jim's recent pages on rosacea and Red

Hello Everyone,

I just wanted to thank Jim so much for his recent pages on "Facing Cure - Red's Rosaceai Story" and "I'm so Proud of Us".

The word "cure" to those of us in the rosacea">i community is as elusive and sought after as the Holy Grail (as I know it is to any disease, like MSi, CFSi, etc that dramatically affects one's life).  So many of us early in our diagnosis have prayed that each trinket we found was the Holy Grail, only to find out it was a rusty, cruddy old tin can, and just as useless.....

It is understandably difficult for anyone who has not suffered from rosacea to know its true impact and pain.  Beyond the obvious cosmetic aberrations that can significantly impact one's self-esteem, self-confidence and psychological well-being in general, there is great physical pain and discomfort.  For many of us in the moderate to severe stages of the disease, the constant pain of feeling like your face is on fire, like your epidermis is sizzling and burning like a round of bacon in a frying pan, the increased hypersensitivity to anything you put on your skin, sometimes even water burns and irritates, the inability to enjoy social gatherings or public places because of social flushing and heat intolerance, renders many of us disabled by the condition.  The impact on our relationships can be profound.  The impact on our ability to work, or do normal activities like cooking or cleaning (anything that raises body temperature), etc, can be immense.  To control my rosacea for example, I have to spend thousands a year on anti-inflammatory topicals and supplementsi, take cold showers (any warmth will cause me to flush and burn for hours), avoid any environment above 15 - 17 degrees Celsius or I will be in agony, stay out of the sun and bright lights, only eat cold food, no hot drinks or thermally hot foods (again, one bite of something even lukewarm sets me off), I can barely even sit close to someone because their body heat will start me to burn up (you can imagine how difficult relationships could be), avoid all foods and spices which are high in histamines and salicylates which are triggers for me, and on and on.  I started out with mild rosacea but it progressed over the years through the moderate and now severe stages.  I thought it would get better after I treated my H.Pylori infection 3 years ago.  Little did I know then that other pathogens were lurking. We liken rosacea in our community to a "beast".  There is just no controlling it's anger and vengeance it seems.  It seems the "beast" may at least in part be Cpni...........

On top of rosacea I have many other problems, including FM and CFS.  So, you can imagine that I am so thankful to Red, my dear friend, for introducing me to the whole pathogen theory of FM/CFS and also, rosacea, and for leading me to this site.  Red truly is a pioneer, and his positive results to treatment so far, are extremely encouraging and promising to us all.  I can only hope and pray to follow in his footsteps and to incur the same positive results with much time, patience and commitment.  It will not be easy, as my recent thread reports, in terms of increased rosacea symptoms since starting abxi that are very difficult to bear both physically and psychologically.  I have been through so much these last few years that my hope, strength and fight had dwindled.  Thank you Red for always picking me up, and keeping my hope alive for better days ahead, and much less red and pink in our lives:):) 

I hope that all of us, with our different conditions, by experimenting and fighting hard, will pave the way for the future for our comrades who suffer the same afflictions.......

Here's to better days ahead for us all.

Pink

Pink,  So often at a time like this, I am simply at a loss for any words.  We who are here each have our own separate hell, and failing true empathy, can still  hold hands tightly and scream with pain or dance with joy together.  I'm really sorry that you have to do this but I can look back on 2 years of some horrible times and realize that my road, though not smooth, is not nearly what it was.   It gets lots better.  And thanks to and admiration for Red, who did what needed to be done - he helped when he didn't have to.

Rica        EDSSi 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Nicely stated Pink.  I can definitely identify with most of your rosaceai symptoms and almost all of the things you have to do to help try to minimize symptoms.   I could probably add a few myself...

The one good thing you can take away from your reactions to early treatment is that you are reacting to treatment.   IMHOi, failing direct detection via testing, the best indicator of pathogen involvement in your illness is the fact that antibioticsi are making things worse, and since NACi also seemed to cause a reaction, you can be almost certain that Cpni is involved (NAC's effects are pretty specific to Cpn from what I understand).    So with your first dose of antibiotics almost a month ago now, you've taken your first step in getting better.   The first few steps are difficult, painful, and clumbsy, but as Rica mentions, soon you'll be doing the dance of joy...

Rica, I just noticed your EDSSi score.  I didn't really understand EDSS scores until I just read on one of the surveys what each level means.    Your progress is AMAZING!   I'm glad to see how well you're doing.   Here's to continued improvement!!!

 

On Combined Antibiotic Protocol for Cpn in Rosacea">i since 01/06

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

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