27 Apr 2018

Porphyria Help


I am really struggling and need some guidance.  I believe that I am dealing with porphyria, but can't seem to get a handle on it.  I have read ALL of the discussions on this condition in the handbook.  I just feel lost.  For almost a week and a half I have been dealing with some crazy symptoms, and I believe they are porphria, but I just don't know.  I've had chest pain, anxiety, stomach pain (like I got punched in the gut) no appetite, body agitation, memory problems, weakness, back pain (like I got punched in the back) and fatigue.  I need some help with how to mitigate this.


activated carbon, can 3 times 2.5 g, 1 g vitamin C for at least 2 times a day, antiinflamatory - ibuprofen, naproxen several times a busyquercetin 2 x 500 mg

kimomile - porphyria has been a huge problem for me.  I wrote a bit about my symptoms here: http://www.cpnhelp.org/16_month_updateI never found anything to prevent the attacks and the only thing which helped me get through them was glucose/dextrose tablets and carbohydrates (usually potatoes).  If you are in the US, I believe you can get 'smarties' which are glucose - not the UK smarties, which are chocolate!I took as much glucose as I needed.  Tons of the stuff.  I did put on weight - I'm not really sure how much of that was as a result of the carbs and glucose, but there was no other option for me.  All of that weight has now disappeared.  And the porphyria has improved as I've progressed with treatment. It does eventually get easier!I'm not sure, but I think some of the symptoms you mention could be coming from herx/die-off/toxins, rather than porphyria.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Wow!  Thanks for that!  I think you might have responded to me a year or so ago when I was struggling with this.  My doc just doesn't give me solid answers.  It think she is learning too.  I am between docs right now, actually and am seeing someone new in August.Your methylation panel looks a lot like mine. The COMT is tricky.  Almost anything I take makes me feel terrible.  Chest pains, anxiety, brain fog/cognitive confusion, etc.And I'm still trying to figure out what is herx, porphyria or overmethylation...ugh!!  I am worn out from it!  They way I am beginning to understand it is: if I feel gross and the burbur detox and expsom salts help, it must be a herx.  If that doesn't help, it must be porphyria, so I take charcoal and glucose, but based on these replies, I'm not taking nearly enough..  If none of that helps, then I don't know what.  So hoping this next doc can help.  I have the whole Lyme nightmare too!Thank you for taking the time to respond!  I greatly appreciate it!

CPN positive, secondary porphyria borderline positive, anaplasma positive, candida positive, Lyme test negative, but positive bands.High blood pressure avg 150/95, chronic fatigue, brain fog, stomach distress, anxiety, memory issues. 

I also have big issues with Porphyria, I did the "Poor man porphyria test" described in the article in the handbook. Trying to implement jen_obriens moppers & detox advice. It helps alot.I don't have to use Xanax anymore, personally i experience the panic attacks, anxiety problems the worst also the memory. I don't know why but the metronidazole seems to trigger it for me.Going to look for charcoal as it seems to help alot for many Smile