Pyroluria - any thoughts ??

just read this article by better health guy and Dr Klinghart

https://www.townsendletter.com/July2017/krypto0717.html

very interesting read - but new to me.
don't know where i found the link - did i see it posted on here perhaps?

anyway - i suffer most of the symptoms described to some degree and apparently, 80% of chronic lyme patients do also have this condition

has anyone here been tested - done treatment and found benefit - or is it another fringe theory ?

The Dude Abides said...
Try the following links to search this forum for posts on Pyroluria and KPU.

Pyroluria: https://bit.ly/3p9st2z

KPU: https://bit.ly/3l8mj6x

cheers! Will defo have a read through some of those ....

yes, I had also read some of the information out there by Neil Nathan on Porphyria also and it had stuck in my mind - so the link to this Pyroluria also caught my intention.

re-reading the forward to Buhners 2nd edition of Healing Lyme - Nathan links long-duration herx type reactions to porphyrin release and that this is a typical flag in his practice to a likely Chlamydia Pn chronic infection.

The Klinghart article states everyone with Porphyria also has Pyroluria - and if i followed correctly
- positions the Pyroluria as the upstream event in the chain - so in theory the pyroluria test would be more helpful - as it's nearer to the root cause.

Pyroluria also seems to be more easily treatable - mainly through supplementation of
Zinc,
Vitamin B6,
Magnesium,
Biotin,

I did the questionnaire offered by the testing company ( see link in the article) - and got a score of 14/14 ( highly likely to have Pyroluria )

but I guess my question is:
- if this is such a common condition in Lyme patients (apparently the prevalence is 80%)
- and so significant that this on its own is enough to keep us fully ill.
- a test is only 70Euro ( just urine test from the Dutch lab - linked in the article )
- and it can be treatable effectively with just some over the counter supplements
it sounds like the Holy Grail!

so why do not more people incl LLMD's know about it and hence why are we all still ill??
something seems odd to me here.....

So an update and my thoughts thus far

I read a good deal of the posts on this topic from the search results on this forum - thanks to The Dude for the DuckandGo links

here is what i found:

-a lot of people have been down this path before me ( apologies to all if this is old ground)

-the science behind it appears factual enough - in that the mechanisms described do
appear to exist and have been pretty well documented in the scientific journals.

-however, very few people on this forum reported that it made a big difference to them in their recovery.

perhaps it is the same as so many things with Lyme disease - in that we are all different - and so whilst these mechanisms may be at work in most of us - how large an effect they are having in each individual's case may well vary quite a bit.

i do feel that if this really was such a significant issue - ie large enough to stop 80% of us getting well without it being addressed - I think there would be more accounts here of people shouting about how good they started to feel after x weeks on this protocol
- or at the very least a good number of people stating they felt this really made a difference. I did not find these sorts of accounts.

in my own case, I have many of the markers listed in the various symptoms lists and blood/urine test markers. however, I have been supplementing with B-complex incl 50mg of B6, Zinc, magnesium and Biotin for years so not sure what to make of that.

overall, i didn't find anything in my reading that made it jump out to me as a compelling case - more another somewhat possible grey area that may, or may not, be involved to a greater or lesser degree in my ongoing illness.

it reminded me somewhat of the recent VDR suppression discussion / Marshall hypothesis - ie - it seems like there is something there - but I'm not sure we have grasped the full picture of what is going on correctly yet. and so it doesn't quite seem to fit with what we see and as a result, addressing it doesn't seem to be as effective as we would like it to be.