Porphyrias

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Disease cause by incomplete breakdown of heme products in blood.

JUST TO THANK YOU FOR THIS SITE!

GOD BLESS YOU FOR DOING THIS SITE!

Hope everyone gets the answers that are looking for, and the needed support; this thanks to you guys making this site possible for all of us!!!

It's marvelous!

Maria 

Another lesson learned

I have tried tagamet, Cholestyramine, and now metamucil to try to absorb toxins. All three have caused a severe porhyria attack. Complete with abdominal pain this time around. I then did some researcha and found that all three lower serum glucose levels. So then how can they they be good for a cpni infection with associated porphyriai which I have tested positive for?

Update added FIR sauna & moving along slowly.

We got our FIRi sauna set up last weekend and I have been eagerly but cautiously using it for 10 min. at the start of my day after drinking water to hydrate first thing. Probably the most interesting result thus far is it restarted the eye burning, sneezing, bronchial irritation with resulting cough. These are all at minor degrees but nevertheless it is a direct response to using the sauna I believe as nothing else has changed in  my environment. The heat from the sauna feels soothing on my sore back and shoulders but causes some itching and then later in the day they ache again especially at night. But less so than on the MPi and prior to starting the NACi, supplementsi, etc.

Cytochrome P450, Drug Interactions, & Secondary Porphyria

I’ve read a good deal of discussion about these issues since starting on CAPi. Perhaps I’ve overlooked something in the archives, but I’ve read some recent sources that have given me new information about this complex topic.

 

D-Ribose, "Hockling" And Other Issues

Paula has been on the CAPi for about 6 months now.

She started on the NACi November 28th 2007, added Doxyi in Jan and has been on the full 300mg daily dose of Roxyi for 5 weeks now.

Not many improvements in her condition to speak of as yet, but as she is so severely effected we are taking this protocol very slowly.

As she is tollerating the Doxy, Roxy and NAC so well, we plan to start the next stage of the protocol  (Tinidazole) towards the end of July as it is said to give the Roxy 2-3 months before adding Tini.

Porphyria Over Time on a CAP

This question is for the porphyric "oldies" like Elinor and Jim.  Over time on the CAPi, has your porphyriai lessened?  Do you think it's conceivable that it might devolve to such a low level as to not even require treatment or even monitoring as you continue to improve on the CAP?  Or is it something that will require attention from now on whether the porphyric is treating infection or not?  Thanks,

Which brand of Calcium Pyruvate?

What is being used powder or caps? Also which brand are you guys using and from which company or reputable site?

thanks

Brian

Addendum - Pulse #1 - Day 21

Addendum to my blog.  It's day 21 post pulse. I am depressed and sick and tired of being sick and tired.  I guess it's finally hit.  I only took 1- 250 mg of Tindamax for 2 days.  Nothing really happened until now.  I was experiencing pelvic/gut pain but kept writing it off to the pulse.  so I then went the route of gyn and  urologist which has led me to:

1) I have a bladder infection  -- was prescribed Nitrofurantoin 100 mg BIDi

2) Per gyn - I  have BV and gyn wants me to use Clindesse -- I have not administered it yet as I am concerned I'll be on antibiotic overload and could possibly cause another pulse or yeasst.  I have no idea how it would interact with CPNi.

Cimetidine / Tagamet

I got very excited when I read David's notation in Farandwide's thread on Porphyriai: http://www.cpnhelp.org/porphyria<

Kim's been having die-off reactions and I came here first. She's been taking about 2500mg of charcoal at night, I haven't figured out how to decipher Oregano Oil, and then I came across David's post - Thank you David.

I added a link to the paper David referenced and info on the dosage for Tagamet. I'm still not sure of the dosage and timing for cimetidine and I found some more info here that I thought ought to be in a single post to make it easier to find.

Secondary Porphyria in Cpn: Extracts from Stratton/Mitchell Patent

I thought this should be available to Cpnhelp users. This is extracted from the Mitchell/Stratton (Vanderbilt) patent:

Doxy causing heart pain?

Hi Y'all!

I've been living on the yahoo porph site for a few months, trying to get my heart to quit trying to quit on me.  I ate a lot of sugar, got fatter, learned to love cholestyramine.

(Quick refresher:  I have primary porphyriai, Lyme, Babesia, and cpni.  I had a heart attack in January from (?) dental lidocaine and IV Rocephini/Lyme die-off.  Glueing Humpty together again since then.)

How many cpnhelp members use Cholestyramine/Questran?

Does anyone have a sense of how many cpnhelp members use Cholestyramine/Questran?

If anyone has had a difficult time with it, i.e. a herx reaction, do you by chance have low cholesteroli?

Trying to solve the mystery of why some "herx" (or just plain have a bad reaction?) on it and others don't.

Thanks!

Marysia

 

Michèle’s 5 days of HELL!

 

 


First of all I’ve got to say that short of the post-operative pain period of a hysterectomy, this has got to be the worst few days of pain that I have experienced in my life.   But secondly I’ve come to realise that some aspects of this most unpleasant experience are very positive. 

okay to take cholestyramine/Questran with food?

Based on posts in Daisy's "9 Kinds of Hell" blog, it appears that Questran/Cholestyramine can be taken with food.

Did I understand that right? I though it was supposed to be taken 2 or more hours away from food like the activated charcoal. Doesn't it also absorb the food instead of the porphyrins? There was a bile component I didn't fully understand. Perhaps that's the difference between the Cholestyramine and the charcoal?

Has anyone here herxed on Cholestyramine before? I seem to be having real trouble getting on it.

(Sorry if this is elsewhere on the site. I searched but didn't see an answer already discussed.)

Jim, do you recommend L-propranolol or D-propranolol?

Jim, I found a distinction between L- and D-propranolol when I searched under propranolol on Wikipedia (see below) and wondered which type you found helpful for porphyriai. Any brand recommendations?

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