posted
I have porphyria not sure if its genetic or secondary. I did a 24 hr prophyrin urine test and high levels of "coproporphyrins"? something like that
i am on high levels of minerals and borage and primrose oils, a protocol developed by a doctor in germany that he gives for chronic lyme patients. the protocol was developed on the belief that everyone with lyme most likely has something called 'KPU". I dont know how new this info is but my LLMD has just supplied me with it.
Is anyone haveing success with this protocol? what is it helping? and is porphyria treated just with this or other things? does it matter what kind you have?
Posts: 723 | From boston,ma | Registered: Jan 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry, I'm on no real protocol so can't answer your question but only lead you to literature.
With both chronic variegate porphyria and protoporphyria, my life style and Rx choices have been adjusted for years and it just seems second nature now.
Porphyria is a very complex subject.
As Dr. K has so astutely recognized, HPU / KPU might be the place to begin.
The first rule of treatment: avoidance of all things that can trigger porphyria attacks or even elevate porphyrin levels. But the tests are just not going to help us much there due to fluctuations.
Certain Rx, certain foods, chemicals in the home, work or car, mold, etc.
If something from those categories cannot be avoided, specific kinds of liver support MIGHT help.
I have two kinds, the diagnosing doctor told me of genetic origin -- and that may be true. My mother's early death was directly related to drugs that I now know should have never been given to any patient who could have porphyria.
But after more study, I see that it could, perhaps, be "secondary" -- still, it dictates ALL the Rx that I can or cannot take.
Diagnostics are very tricky. There are at least 11 kinds of porphyria and subsets of those.
I also have to wonder if strong "herxes" are not sometimes porphyria attacks, to some degree.
The tens of thousands who die each year in U.S. hospitals from Rx, even if correct dose, well, I have to wonder how may are due to unrecognized porphyria.
So, although so intricate, this is an important topic for everyone.
There have been many threads about HPU / KPU. In addition to the informational links in Porphyria thread, you might search the subject line for past "experiences" posts here:
posted
yes it is the famous doc in Germany. cant name names here. well does anyone know what drugs to avoid? and if you have porphyria, does what kind you have dictate if you have to follow the diet? i dotn know what kind mine is and im on the KPU protocol but im reading i have to avoid milk and red meat and i already cant eat sugar cause of yeast but the porphyria diet says i need to have alot of glucose so it is contradictory in my case. the diet is also high carb, and i usually stay on a low carb diet cause it makes it easier to keep my weight stable. i hate this diet stuff
Posts: 723 | From boston,ma | Registered: Jan 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Katrina,
Have to break up your post to read it: -----------------------------------------
yes it is the famous doc in Germany. cant name names here.
well does anyone know what drugs to avoid?
and if you have porphyria, does what kind you have dictate if you have to follow the diet?
i dotn know what kind mine is and im on the KPU protocol but im reading i have to avoid milk and red meat
and i already cant eat sugar cause of yeast but the porphyria diet says i need to have alot of glucose so it is contradictory in my case.
the diet is also high carb, and i usually stay on a low carb diet cause it makes it easier to keep my weight stable. i hate this diet stuff
(katrianb in Boston, MA) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 1. Drugs to avoid or to approach with caution & support?
Generally, drugs that require metabolism by the "Cytochrome P-450" liver detox pathway.
There are various lists in that thread and not all exactly the same. Start at the American Porphyria Foundation.
Sometimes, you can cross search Google for the drug name with either: P-450 - or porphyria
Individual responses can vary.
2. Diet
A. Carbs
You raise an excellent point that has bothered me for some time.
Spirulina may be able to be a "sugar" substitute in this case. See that thread for more detail - and see the herbal treatment post there, too.
I do get 5 grams of sugar a day in one ounce of an 85% dark chocolate and that helps me stay steady, too. But, it's usually with nuts or melted into a nut butter to balance glucose.
For me, a low carb diet can be disaster.
While "low" seems to have so much wiggle room, I define "low" as "low" and I think there is absolutely no need for a low carb diet but the KINDS of carbs can be found that will also fit both lyme & porphryia diets.
I do not agree with the kinds of refined carbs listed in that "Secondary" article but the idea is of vital importance, we just have to adjust.
QUINOA is the best. Spirulina, too. LOTS of vegetables staring with breakfast.
Remember, though, that for an acute porphryia attack, IV Glucose can save a life. At that point, though, sugar by mouth would be too late.
Glucose is glucose and I'm not clear about how other food sugars work regarding the "porphyria first-aid kit" - but I've come to find a food plan that works for me.
That one ounce of 85% dark choc. is the only processed food I consume. All other is "whole" - so it can be done.
B. Protein
As for protein, technically, I should avoid red meat. And, for years I did and it helped.
Then I got to a point where I needed it - but only from grass fed stock, organically fed and humanely tended.
And I only eat red meat in small portions about 3 times a week.
Fish works best for me (WILD salmon or sardines). And legumes are daily.
Those with chronic infection require 25% more protein, from varied sources.
3. Does the kind of porphyria matter regarding methods to keep porphyrins at safe levels?
I do not think so. Excess porphyrins can cause trouble for anyone with any kind of porph. dysfunction. I've not read that, per se, but it just seems to make sense to me.
4. Some of this can vary, according to individual responses and fluctuating circumstances.
And the study & understanding of this topic is constantly evolving (and needs to do so). -
[ 03-06-2012, 05:09 PM: Message edited by: Keebler ]
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