Cpnhelp.org

Thanks Red!  Can't wait to read it.  :o)

Big hugs!

TP 

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May 2008. NACx1200mg, D3x2000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosacea.

You're welcome, TP!   How are you doing so far?

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

I am having more bad days than good ones but I am convincing myself that this is somehow a good thing... I think my pancreas is unhappy because it hurts (??) My old Edmonton MD is considering taking this on with me...YIPPEE!!! Ahem, I'm mean I feel cautiously optimistic.  

First thing he told me to do was up the Vitamin D to 6000/day.  That's a good sign!

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May 2008. NACx1200mg, D3x2000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosacea.

Too funny!   Glad to hear you're so cautiously optimistic!

Sorry to hear you're having more bad days than good, but this is really par for the course in the early days.  Still, remember attack the secondary porphyria with all options.  This is your big chance to pig out on those starchy carbs and glucose tabs with no guilt!

Keep us posted, and good luck with your Edmonton doc!  I like his advice on the Vit D3 btw.   In addition to its likely killing effects on Cpn, through the elevation of cathelicidins, it kills so many other pathogens that are likely involved as co-pathogens in many of our diseases/conditions.   I think it has been very instrumental in my own recovery.

But be careful about upping it too fast.   I can cause pretty heavy die-off and secondary porphyria symptoms itself...

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Thanks Red. I've jumped to 4000 which may explain the way I'm feeling. I'm up to 2400 mg NAC now too.

I really appreciate your guidance!

Big hugs!
TP

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May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosacea.

That will definitely do it! Don't underestimate the power of the D...

As long as you don't have any medical reason not to, and I know this is counter to everything you've probably read up to this point about what you should do for good health, but definitely give glucose tabs a good try too. You can get them at any drugstore down here. I'm assuming it's the same up in your area:

http://www.drugstore.com/products/prod.asp?pid=37594&catid=10017

Take 2 or 3 and see if you don't feel a bit better in @ 20 minutes or so. If not, take another 2 or 3 to see if this works. If it does, you're likely suffering from secondary porphyria and should probably take glucose more regularly during the day to help minimize this problem. Others find the glucose based "Smarties" work too, and are cheaper. I seemed to notice more stomach irritation with them. Not sure why. Maybe it was the amount of citric acid. Anyway, glucose really helped earlier in treatment for me, and seems to really help others too...

I know you're probably worried about Candida, etc, but the cathelicidins elevated by Vit D3 have been shown to be pretty effective at killing Candida so do the glucose.  It may allow you to ramp up the Vit D3 more quickly...

Hope this helps. Keep us posted on your progress. I hope you feel better soon!

Big hugs back at you...

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Thanks Red!

I admit to forgetting about the glucose when I feel this way. My head's not connected to this all just yet. I will pick up the glucose tomorrow, the local pharm had set some aside for me a while back and I've let myself get sidetracked.

I'm not going to worry about the candida issues while taking this on, unless/until I have to. I will post on my blog with updates, sorry to derail this one...

Best wishes,
TP

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May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosacea.

A superb review article, and a great find. Thanks Red! 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tini 1000mg/day pulses; Vit D2000 units, T4 & T3

You're welcome, Jim.

TP, no worries about derailing this thread. You haven't...

The whole not thinking straight thing seems to be related to the secondary porphyria. The worse the secondary porphyria gets, the less reasoning you're able to muster.

If you have some sugar cookies on hand still, eat a couple tonight. They'll help you feel better. A caffeine-free sugary soda will even do.

Hang in there...

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07