I am looking over some old test results I had for any clues to
why I am not getting better and found an old test for 24 hour
porphyrins in my urine. There was a time where dr k was
talking about porphyria being common with Lyme and that if
you want to get rid of the Lyme you have to treat the porphyria.
I don't know if this is something dr k still thinks. I tried the
protocol for it with b6 and zinc and some other supplements I
can't remember but I remember it didn't help. I have been
doing some reading on it and I read that heavy metals can
cause this (which I've established that I have a lot of from a
heavy metal test) and then there is also genetic porphyria.
Does anyone know how you can tel which kind you have?
There were different porphyrins the urine test tested for and
the one that came back high I believe was corprophyrins? Not
sure if I spelled that correctly . I think it was corprophyrins II
but it could have been III. Does it matter anyways? Are the
genetic and ones acquired from heavy metals treated the
same? And I am reading that some people that have it have to
avoid the sun. Is that all people with porphyria? Should I be
avoiding the sun?
Posted by Lymetoo (Member # 743) on :
Maybe this would also be found on the 23andme.
Be VERY careful adding B6 to your regimen. It can become toxic very easily.
Posted by katrinab (Member # 30330) on :
I fee pretty good when out in the sun. The warmth from the
sun decreases my muscle pain. However on down days my
eyes are sensitive to light of any kind, but they are always
sensitive to fluorescent lights no matter what day it is. I don't
know if the light sensitivity with my eyes is related to porphyria
though.
Posted by katrinab (Member # 30330) on :
I'm so sorry I forget to space things out. I have such bad brain fog sometimes let me go back and fix it
Posted by katrinab (Member # 30330) on :
Lyme too, I thought b6 can only become toxic to people that
Cannot process b6? Like a methylation problem?
And for this I thought people were taking b6 in the form of the
P5p kind? No is this wrong? Can it still become toxic
No matter which form?
Posted by Keebler (Member # 12673) on :
- There are at least 11 kinds of porphyria. And each can be very different in manifestations and requirements for self care / Rx avoidance. In only one or two do the sun cause trouble to the skin.
It's important to know the KIND of porphyria you have, not just that porphyrins were elevated. Though, a person can have elevated porphrins at a point in time and not have a genetic porphyria.
Lyme / TBD, though, can cause light sensitivity and also the nervous system glitches of heat intolerance.
I'm really toast now and that particular detail in my notes is hard to find. I will be back by day's end with that for you, though.
Many Rx are contraindicated with porphyria, though, impt. to know. Be sure to see the Porphyria Foundation, organizations for up to date info.
[ 12-24-2019, 03:53 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- If the sun does not work for you, still try to get some DAYLIGHT into your eyes first thing in a.m. Not direct sun. And some daylight onto your skin, not direct sun and not bounced sun, either.
If the sun works for you, 20 minutes a day on skin is good, as early in a.m. as you can is good. No sunscreen for that amount of time. Longer, though, do be care not to get too much sun on skin.
With porphyria, though, sunscreen can be very toxic. I don't believe in sun screens if they are chemical based, though, as they can cause more damage than good.
what type of M.D. tests for PORPHYRIA? Includes detail about: HPU / KPU . . . . -
Posted by katrinab (Member # 30330) on :
Hi Keebler,
I was diagnosed with porphyria a long time ago. I treated it with the kpu protocol along time ago in combination with antibiotics
. I didn't notice anything so i stopped it. I was unsure if it was a genetic porphyria or acute porphyria or if it mattered. Do you know if it does? I am trying to read all the literature you posted and it doesn't seem to say. I can't seem to find a link that says how you can tell anyways.
Even on the porphyria website I can't find anything. I dont have any skin symptoms and that seems to be what most of he porphyrias cause except maybe the one that is induced by Lyme? Do you know if dr k still believes that in order to get better from Lyme you need to treat the pyloria?
I'm trying to figure out where perhaps my treatment for Lyme could have gone wrong though I know dr k says this kpu affects a lot of people with Lyme yet I think that a lot of llmds don't know about it. I am reading that dr k believes that once you start detoxing with kpu you will need to detox heavy metals.
That is something I didn't do. I just did the protocol for kpu. Also I think I read somewhere that porphyria causes a sensitivity to certain antibiotics. My doctors never considered this as well and put me on any antibiotic they thought would help.perhaps if I combine the kpu protocol this time with a heavy metal detox and rife machine I might have a better chance this time around.
What do you think Keebler? Has treating your porphyria with the kpu protocol helped you?
Posted by mamalicious (Member # 43611) on :
I know the only physician in the world that has been diagnosed with Porphyria. We are always discussing how similar our symptoms are. If you PM me I can provide her contact information..
Posted by WPinVA (Member # 33581) on :
Katrina, you may be thinking of B12.
My understanding is that B6 can be toxic to anyone in too high of a dose.