New and interested in Porphyria

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

But I am SO interested in secondary porphyriai. 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 abxi 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 hemei. 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

 

 

 

 

Comments

I gave up on cholestyramine

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

Taking large amounts of B12

Taking large amounts of B12 seemed to help me battle porphyriai. 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 Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Yes glucose tablets and

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

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

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

CFSi 32years/FM 14 years/ CRPS 5 years/.  Previously MPi 5 years. Off everything since 01/12/2012.

 

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I only just found these

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 porphyriai 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 porphyriai 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

CFSi 32years/FM 14 years/ CRPS 5 years/.  Previously MPi 5 years. Off everything since 01/12/2012.

 

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Are you taking anything to

Are you taking anything to mop up the porphyrins? Cholestyramine is one. I used to have bad porphyriai. 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 cpni is involved, since it causes disease in blood vessels, among other things. Do you wake up nauseated?

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

double post

double post

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

If you have been on another

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 supplementsi and keep on reading.

Rica

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