Re: testing porphyria levels

[Guest guest]

Re-reading the Stratton materials, his patent is

outlining ways his lab has developed to test for this.

He refers in a number of places to urine porphria

tests as being inadequate, as patients undergoing

secondary (rather than genetic) porphyria from

bacterial kill may not have high urine levels, or may

have more tissue specific porphria reactions. His

focus in on measuring enzyme byproducts of heme

synthesis in the red blood cells:

" The diagnosis of chlamydial-associated secondary

porphyria may be difficult as the porphyria may be

minimal and tissue-specific. The measurement of 24

hour urine or stool porphyrins may not be sensitive

enough in many cases of chlamydial infection to detect

the secondary porphyria. Here, the diagnosis depends

on the fact that if excess porphyrins are reaching the

circulation, the precursor red blood cells will absorb

these and make heme. Thus, the enzymes for heme

biosynthesis in the differentiated red blood cell

become elevated and remain elevated for the life of

the red cell. This allows the diagnosis of episodic

low-level secondary porphyria as is seen with

chlamydial infections. Thus, elevated beme synthesis

levels can be used to diagnose intracellular

porphyria. See Example 7. As discussed above, some

patients having a Chlamydia-induced porphyria do not

have abnormal levels of heme precursors. For those

patients it may be appropriate to determine the

presence of Chlamydia as well as porphyrins in the

individual. The presence of both the pathogen and

porphyrins (e.g., determined by ELISA assay described

below) is indicative of secondary chlamydial

porphyria, rather than a genetic based porphyria. A

proper diagnosis can thus determine the therapeutic

regimen needed to treat infection and symptoms of

secondary porphyria. The inventors have discovered

the existence of antibodies to the various metabolites

of heme biosynthesis, as well as Vitamin B12

(cobalamin), which is molecularly similar to these

metabolites, in patients with active systemic

infection with C. pneumoniae. The antibodies are

primarily IgM; this is similar to the antibody

responses to the MOMP of C. pneumoniae in severely

symptomatic patients. Example 8 illustrates titers in

symptomatic patients with systemic C. pneumoniae

infections. The presence of antibodies to Vitamin B12

may have functional significance by decreasing the

amount of bioavilable Vitamin B12. Thus, a Chlamydia

infection may cause a previously unrecognized

secondary Vitamin B12 deficiency. Administration

(e.g., intramuscular) of large quantities of

VitaminB12 (1000 to 5000 & #956;g) (e.g., parenteral

cobalamin therapy) creates large amounts of Vitamin

B12 available for binding to the native receptors of

antibodies with an affinity for Vitamin B12, thereby

saturating these anti-Vitamin B12 antibodies and

increasing the amount of bioavailable circulating

Vitamin B12. "

All very complicated. Anyone know of existing tests

for B12 antibodies? Agent Bleu has been our B12 maven.

What do you think, Bleu?

Wheldon, or , are very communicative and

would be happy to tell you how they measured this. I'd

be interested to know myself. You can dig up his email

somewhere on his website.

Jim

From: " tansyap " <tansyap@...>

Subject: Nelly, urine test for Kryptopyrroles

Hi Nelly

I was tested for pyroluria/ high levels of

Kryptopyrroles due to my

low zinc levels even when supplementing it, frequent

infections, and

poor tolerance of meds etc many years ago at Biolab in

London. Biolab

may know of similar labs in France who can carry out

this test. It

may even be possible to have a sample sent there for

testing; I

presume it depends upon how quickly the test has to be

done . See

http://www.biolab.co.uk/singles.html

" Pyroluria and Porphyria

Some people produce more of the protein-like chemicals

kryptopyrroles

and porphyrins than is healthy. These are genetically

inherited

tendencies which increase a person's need for zinc.

Stress also

depletes zinc. A person with this condition

experiences nausea and

constipation, white spots on the fingers, pale skin,

frequent

infections, impotency, and poor tolerance to meds. "

Source -

http://www.sootoday.com/content/editorial/archived_editorials.asp?

EN=4188

" Many patients with CFS show white dots in their nails

which is

associated with low B6, zinc and pyroluria with

kryptopyrroles in the

urine, and if these levels are high there is high risk

for acute

intermittent poryphyria, especially if reacting to

drugs , chemicals,

fumes, perfumes and chlorpyrifos/pesticides and

herbicides which can

cause a flare-up of porphyria, as also can

barbiturates,

sulphnamides, neuroleptics, etc. " source -

http://www.laleva.cc/food/gmo_soma.html

If your levels raised Kryptopyrroles during die off

you would at

least know why of your symptoms are occurring; if

charcaol does the

business then it getting dealing with this might could

prove fairly

straighforward.

Cheers, Tansy

>> I am trying to work out what test would best be

done to see if

secondary porphyria is something that needs to be

considered in my

case but the tests seem to go after genetic defects

mainly. I see D

wheldon tested his wife's urine for porphobilinogen, I

wonder if this

would be considered indicative of secondary treatment

induced

porphyria. Does anybody know how this is tested? I

have urine

dipsticks that say they test urobilinogen and

bilirubin but no

porphobilinogen

>>

>> Quote from 's updates:

>>

>> " Her urine was found to contain abnormally elevated

levels of

porphobilinogen, and this while she was on an

antiporphyria regimen

(high fluid input, high carbohydrate diet, avoidance

of red meat and

alcohol, activated charcoal twice a day;) this is

evidence that the

reaction has at least some elements of a secondary

porphyria. "

>>

>> Nelly

>>

>>

>>

________________________________________________________________________

________________________________________________________________________

Message: 25

Date: Thu, 16 Jun 2005 21:37:33 -0000

From: " tansyap " <tansyap@...>

Subject: Re: Field Report from Agent Scha

Then you are in good company agent Bleu.

[Guest guest]

Jim,

"... the enzymes for hemebiosynthesis in the differentiated red blood cellbecome elevated and remain elevated for the life ofthe red cell..."

Do you have any idea what such a test would be called?

All I can find are either the urine and stools tests for porphyria or a test called ALA Dehydratase.

Any idea whether there would be any other indirect indications of this elevated level of enzymes for heme biosynthesis in red blood cells?

Nelly

Re: Field Report from Agent SchaThen you are in good company agent Bleu.