New and interested in Porphyria

Submitted by BeezNeez on Sun, 2010-08-01 05:46

 I have been on another protocol for CFS and FM and CRPS (complex regional pain syndrome) and am completing some tests to move over to CPn help.

But I am SO interested in secondary porphyria. I have been dogged by a monthly acute pain that has been around for 18 years now. I have had all sorts of 'oscopies' that were NAD and lots of all sorts of tests with no outcomes. I have had 2 urine tests which indicate low level porphyrins but I'm afraid that no doctor of influence has had any idea of what is occurring.

There is a definite cycle - the pain generally occurring on 21 of each month but occassionally on a different date. Alcohol affects me severely- takes me about 5 weeks to recover from the event (consequently never touch alcohol)  After such an event, I cannot eat protein, just naturally know to stick to carbs. Hormone therapy is a no-no as well. Causes much more severe pain at the time.

I am fortunate that my doctor is switched on to abx therapy for CFS etc but I have never been able to find a way to 'prove' I have porphyria which would allow me admission to a major hospital and at least a trial of heme. I do drink glucose drinks which help a little at the time but mostly I have to bomb myself out with Endone, Buscopan Forte and anything else I can get my hands on. This event always occurs at night and lasts about 8 hours. 

So long for such a mystery but I have revelled in reading the articles here on secondary porphyria - thank you for all your efforts

 

 

 

 

If you have been on another protocol, you already have the discipline to do this one.  You already know that it can be dfficult to find a prescriber.  There are several others from your delightful country who are doing this.  I hope there will be some help to come.  Meanwhile, begin the supplements and keep on reading.

Rica

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

double post

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Are you taking anything to mop up the porphyrins? Cholestyramine is one. I used to have bad porphyria. I was so sensitive to light that if I opened my front door, I would have to squint my eyes to slits. Now I don't use sunglasses when I go outside. I had (have) endometriosis. Do you think you have anything like that? I have wondered if cpn is involved, since it causes disease in blood vessels, among other things. Do you wake up nauseated?

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

I only just found these comments. Yes fortunateldy I have a GP who is prescribing for me and after just one month there was slight ease in my porphyria symptoms. In the second month and after adding ATP co-factors, there was a huge difference in the pain. Just one Endone and I slept all night.

I am going to write more on this topic later but can you imagine what I relief I feel having foujnd out that I do have secondary porphyria and after much reading on this website, the reason why I have secondary porphyria.  I so value the power of community and the willingness of people to share on these blogs.

Thanks you

Beez Neez Brisbane Australia

CFS 32years/FM 14 years/ CRPS 5 years/.  Previously MP 5 years. Off everything since 01/12/2012.

 

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Taking large amounts of B12 seemed to help me battle porphyria. It was my nemesis for a period of time. Also nibbled on glucose tabs (they sell them for diabetics--fairly cheap) Ginger is great for the nausea. Charcoal two hours between meals and meds.

There is a problem with oxygen transport in porphyria, so deep breathing seems to help. Lots of fresh air and clean water.

The fatigue was the hardest thing. Felt like a gorilla sitting on my shoulders! Light sensitivity was tough too.

Never tried cholestyramine, but you might look at it. I got a prescription for some when my thyroid went hyper because I read that they use it for thyroid med overdoses but when I got the prescription filled, I found that it was made with sucrose so I couldn't take it. I guess they make one with artificial sweetner but I won't eat that either.

Good luck!

Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Yes glucose tablets and glucose powder in water surely does help. I have had some B12 shots but my homocysteine keeps on elevating so guess more B12 is in order.

I am interested to hear that some people with porphyria experience painful eyes. I have had this problem for years and never connected it to porphyria. It has decreased slightly with protocols.

Unfortunately cholestyramine and activated charcoal and diatomaceous earth severely constipate me. I add just the tiniest bit to my spirulina drink each day.

I am optimistic that that protocol is already helping. Have had less pain and speedier recovery in the first 2 months - so fingers crossed

CFS 32years/FM 14 years/ CRPS 5 years/.  Previously MP 5 years. Off everything since 01/12/2012.

 

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I gave up on cholestyramine and charcoal because of constipation. I take Garden of Life Detoxyfiber to mop up toxins, and I hope it can grab onto porphyrins.

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)