Porphyrias

warning: Creating default object from empty value in /home/cpnhelp/www/www/modules/taxonomy/taxonomy.pages.inc on line 33.
Disease cause by incomplete breakdown of heme products in blood.

Night/evening sweats - are these generally considered a porphyria or cytokine response?

Hi there

Recently between approximately 9pm and midnight I've been getting periods of intermittent overheating and sweating for no apparent reason (not due to a hot drink or physical exertion) - it comes out of nowhere and might last 5-10 minutes or so where I'm feeling very overheated and have a clammy foehead and feel a bit sticky/clammy all over. Then it passes and I feel ok again - then it'll start again without warning.What category of immunopathology is this - I couldn't make up my mind on the Responses table whether it was a cytokinei or porphyriai event. Can anyone throw some light on which remedy might be best?

Porphryns Re-absorbed From Gut?

Paula is having a lot of trouble keeping the Chole from being vomited up at times.  Sometimes she hacks it up from the very bottom of her gut.

My questions, are :-

1) For the porphryns to be ejected from the body, do they have to move from the bowel and out?

2) If any Chole is still at the very bottom of the gut and vomited out, will the Chole still contain the porphryns and be vomited out, or will they be re-absorbed on their way out?

more thoughts on porphyria

My daughter's is slowling progressing through treatment.  She saw the doctor again this week and he added azithromycin 250mg MWF to the doxyi 100mg that she has been on for about a month.  As far as I can tell she has not had much of a reaction to the abxi good or bad compared to her reaction to NACi and Vitamin Di.  The NAC at 2400mg as well as Vitamin D at 2000 IU made her feel awful.  We cut her daily dosage down of both of those.  She also continues on with Armour.  

18 Months on CAP

Dec 24, 2008 marks the completion of my 18th month of treatment.  I am antibody positive for CPni and Bb.  I started treatment on bacteriocidal level of Doxycycline 400 mg/day for almost 4 months before cutting back to 100 mg BID and adding Roxithromycin 150mg BIDi daily.  Those first 4 months were incapacitating and perhaps advantagious it is water under the bridge and I would not recommend it to others. 

Help - Anyone With Chole For Sale?- + Paula's Plan

Paula's porphyriai is as bad as ever, but was (just about being kept at bay slightly) by 2 sachets of  Chole twice per day (Laboratorios Rubio, Spain's Resincoletiramina).

We have just run out of Chole today - An order was placed with edrugnet.com and was shipped on Monday morning.  The problem is that it could take another week or more to arrive.

So, does anyone have any Chole we can buy in the meantime?  Please PM me and I will look into paying by PayPal.

Last night was Paula's last 2 sachets of Chole.  Today she has taken a large dose of Charcoal - twice so far.  Late tonight I am going to give her 1 sachet of Chole (we will then have 2 sachets left).

Paula To Start Glucose Saturday (hopefully!)

When Paula wakes tomorrow, I am going to give her a very small amount of glucose in a 75cl bottle of spring water and build her up like I did with the ribose earlier in the year.  I will do this when she wakes, as this is the time of her greatest energy for the day (not that it's very much though).

I plan to do it like Reenie advised me below:-

Porphyria Hell!

Paula has had some bad days this past week.  There were times she thought she was dieing.

Those dieing like symptoms were:-

A) Rapid heart beat that wouldn't slow and she would wonder if her heart would take it.

B) Her fatigue would get so bad that she would have trouble catching her breath.

 

These symptoms would last between 30mins and an hour.  It was during this time that she would also get the classic porpyhria symptoms including paranoia issues.  This led me to believe that the 2 major issues above could also be porphyriai related.

 

Starting Cholestyramine

Paula has given the Chole a go.  As of Wednesday she was on about a quarter of a sachet.  At 4pm she would have a slice of rice bread with olive oil spread on it just before the Chole, to help the bile production, but most importantly to alleviate any reaction from the sugar in the sachet.
We have temporarily halted the Chole for a few days, as Paula would get the following symptoms for an hour or two after taking it:-
Cold feeling in her stomach throat and tongue, as if she had an overdose of peppermint oil.  She would get sore gums and teeth which was a bit like the sensation you get when eating an acidy sweet.
As she is so sensitive, the above symp

Paula Has Gotten Worse

A couple of weeks ago, she suffered from a couple of crashes, whilst on her daily trip to the bathroom.  Luckily her daughter was in the house both times, to help her back to bed.  At that point we decided to get a commode put in the bedroom.

Over the course of the 2 weeks, she was able to use her usual jars by the bed for the "No.1" and the commode for her daily "No.2".

About a week ago, she started taking a 3rd dose of powdered activated charcoal (2 teaspoons at a time).  I have ordered some Colestyramine to try at a later date, when it is delivered.  We are doing this to try to bring down her porphyrin levels as much as we can.  Her porphyriai symptoms included:-

Terrible fatigue

Activated Charcoal for Porphyria

Just interested....i would like to hear some experiences from anyone about Activated Charcoal for Porphyriai.

It works for me very well! How about you? I dont read too much about it here and just started taking it because it was recommended on the supplement's list.

Need a Word of Encouragement

A word of encouragement?? I haven't checked in for quite a while. Been doing ok, but have been undergoing Vitamin C IV treatments for 4 weeks followed by Rifampin 150mg twice a day for 4 days.  My energy is zapped and the Rifampin feels like poision to my body.

I'm stepping off

I have been more debilitated, for a longer continual period of time than ever in my life, since starting the CAPi.

I have been bed ridden almost completely for 6 weeks. I am in pain, I am weak, I throw up almost every day. I finally learn which anti-porphyric and endotoxini measures work best for what, and how and when to take them, when the very measures that are supposed to help me end up making me sicker. I do all the things right so that I don't get side effects -- from anything -- and I am run over and flattened. I should not feel this bad, I'm doing everything not to.

BACTERIA/LYME BY ROOT CANALS?

If Lyme can be caused though having a root canal done -as it is said by the Doctor Steven Harris, M.D, in the conference he presented - the link given here by lifeontheice<: and now I read in the website healingdaily an article called “Should you have root canals? Where they talk about this Doctor, expert in root canals, who then found that this “repair in the tooth” might be the biggest cause of bacteria in the mouth and then the body. The article says:

Antibiotics to be available without prescription

This is the news:  In England, possible antibioticsi to be sold over the counter, to treat CHLAMYDIA!

This is the story form http://www.guardian.co.uk/society/2008/aug/06/health<

Oral antibiotics are to be made available for the first time without doctor's prescription under guidelines approved yesterday by the medicines regulator.

A pill to treat chlamydia, the most commonly diagnosed sexually transmitted infection, will become available for purchase in pharmacies across England later this year.

Slammed in the head!

As I write this today I am not fully recovered but will try my best to convey what my latest experience involved. Am writing this with my right eye closed as a matter of fact. So anyway ... what I want to write about in my blog today is reflective of years of chronic illness that I merely pushed off as hormonal induced migraines that we women had to bear in life. Of course ... I think I know better now. Not that hormones cannot play a role in this illness but that I know the true instigator I believe.

Syndicate content