Porphyrias

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Disease cause by incomplete breakdown of heme products in blood.

choco mint charcoal

Who was talking about this? Can you tell me where to order it please.

Was this a + for porphyrins?

I'm not sure where to post this. I did a "poor man's porphyrins test" two days after my last pulse. It took about 36 hours for the sun to brighten up and expose it. It might have darkened slightly, but there was a sediment of reddish-orange sludge. Well, was that a positive, or a negative, or an aberration, or just what? Anyone know?

Ron 

24 hour urine and stool testing

Has anyone done a 24-hour urine and stool test?

Systemic/chronic chlamydial infectionsi have been noted to have an associated secondary porphyriai. Porphyrins, including water-soluble porphyrins (e.g., delta-aminolevulinic acid and porphyrobilinogen) and fat-soluble porphyrins (e.g., coproporphyrin III and protoporphyrin) may produce clinical episodes of porphyria.

The presence of such porphyrins in an individual patient with chronic/systemic chlamydial infection can be confirmed pre- and during therapy by appropriate porphyrin tests such as obtaining 24-hour urine and 24-hour stool specimens for porphyrins."

(from Stratton & Mitchell's THERAPY OF CHRONIC CHLAMYDIAL INFECTIONS INCLUDING THEIR ASSOCIATED PORPHYRIA AND VITAMIN B12 DEFICIENCY: SEVENTH VERSION

Propranolol in porphyria

Propanolol for porphyric reactions. There is some evidence that propanolol may be of help with porphyric reactions. A case study of AIP associated with hormonal changes in the premenstrual period also contains a good review. [De Block CE, Leeuw IH, Gaal LF. Premenstrual attacks of acute intermittent porphyriai: hormonal and metabolic aspects - a case report. Eur J Endocrinol. 1999 Jul;141(1):50-4.] It is available as a pdf file. Propranolol may prevent the adrenergic activity associated with AIP. An animal study has suggested that propranolol may ameliorate attacks of chemical-induced AIP: [Schoenfeld N, Mamet R, Mevasser R, Atsmon A. Experimental latent and acute porphyria in the non-fasted rat; preventive effect of propranolol. Scand J Clin Lab Invest. 1991 Dec;51(8):667-73.] The authors comment: 'dl-Propranolol, 700 mg kg-1, given to DDC treated rats 'latent phase' reduced the amount of porphyrins excreted in urine and faeces to those observed in control dimethyl sulphoxide (DMSO) treated rats. It also prevented induction of 'acute attack' caused by the combination of PB and AIA. It is shown that dl-propranolol affects a few parameters in the haem biosynthetic pathway. Its beneficial effect in porphyria is probably the result of increasing the concentration of haem in the free haem pool.'

SSRI's

Am I correct from reading the Vanderbilt patent that 5-HT would exacerbate porphyriai?  Would that make the SSRI that I am on a bad idea?

Porphyria symptoms

This is about the most complete list of porphyrin symptoms I have seen. (From June 1996 issue of Our Toxic Times.) I have no idea if all of these are valid but I thought it might interest people since Cpni and treatment is thought to lead to secondary porphyriai.

Abdominal pain
Anemia: hypochromic,
microcytic, hemolytic
Amenorrhea (absence or
suppression of menstruation)
Anxiety
Appetite, loss of
Back pain
Behavioral changes
Bladder distention
Bowel incontinence
Breast secretions
Carbo craving
Cardiac arrest
Nervous system lesions
Chest pain
Confusion
Conjunctivitis
Constipation
Corneal inflammationi<
Delerium
Depression
Diarrhea
Disorientation
Dysphasia (inability or
difficulty swallowing)
Extremeties painful
Facial hair, excessive
Fatigue
Fecal impaction
Gastrointestinal spasms

Downloadable Porphyria pdfs

For the techies and medically minded, I've added two downloadable pdf files from Stratton & Mitchell which give fuller explanations of how Cpni causes secondary porphyriai. Enjoy!

http://www.cpnhelp.org/?q=HostCellInteractionpdf< 

How Cpn causes porphyria: pdfs of Stratton/Mitchell Articles

 Two downloadable pdf files are included here for those who want more detail on Cpni and secondary porphyriai.


1) This link will download an important and classic article by Dr.'s Stratton & Mitchell called

The Pathogenesis of Systemic Chlamydial Infectionsi:
Theoretical Considerations of Host Cell Energy Depletion
and Its Metabolic Consequences

 Download  < Alternate Download<

It explains in detail the impact of Cpn cellular parasitism on ATP depletion and on hemei synthesis and resulting porphyria. 

End of Day One Fred

I first posted this in response to Paul's comments on another thread, so I'm just repeating it here so it's part of my "Fred" blog. Here's how I've learned to sort my reactions out in terms of my own experience, correctly or not!

  1. Endotoxini reactions seem to typically include feeling chilled, cold, cold hands and feet, and so on. Dr. Powell had a great biochemical explanation as to why this is so, for the life of me I can't recall what it was. I just remember it as typified by chill, cold extremities and peripheral vasoconstriction.
  2. Cytokinei (immunei) reactions are typified by inflammationi, consequent pain, swelling or congestion of tissues, and cascade of other responses like histimine release and so on.
  3. Porphyric reactions seem typified by a feeling of loggyness, depression or anxiety, nausea, disorientation, discoordination (when not caused by loss of muscle control function, see below) bowel disturbance, fatigue, hypersensitivity to light, sound and other stimuli. You note, Paul, that the porphyrins also bind to nerve receptors, especially GABA receptors, and thus interfere with the modulating functions the correct neuroransmitter would perform, hence increased pain sensitivity and anxiety and depression (both modulated by GABA). But increased pain sensitivity is not the same as pain-causing, and I know inflammatory pain feels quite different from hypersensitivity.
  4. Cell deathi seems typified by loss of baseline function (eg worsening of hand function in MS), pain, and so on followed by slower recovery and then improvement above baseline. 

 I see this in my reactions to the Fred pulse. When the dose hit a couple hours after taking it, I started to feel increased chill and cold despite all the things Dr. Powell has me on to counter endotoxin which usually do well to counter these symptoms. Then I had a rather rapid porphyric response (over the next hour or so) where my coordination, mental focus, disorientation really increased. Mac noted how visible my typing problems were on the chat. What they didn't see was how many times I had to type and retype a word before I could complete a sentence, and that poorly spelled and error laden even so.

Secondary Porphyria: what you should know before starting a CAP

Cpni induced secondary porphyriai<

Treatment of Chlamydia infection may exacerbate pre-existing genetic porphyria or more likely cause a secondary acute porphyria by making the intracellulari Chlamydia more active or by killing infected cells that already are loaded with high porphyrin levels. Some of what is mis-labeled as a “herx” reaction to treatment, is actually an acute porphyria reaction and not a reaction to bacterial endotoxini which is what a true herxheimer reaction is referring to.

FEELING TERRIBLE!!!!!

I have been on INHi for three weeks now the beginning I felt TERRIBLE with a capital T.  Then I started the third week and started to get a lot of neurological stuff going on.  SO NOT FUN!!!  Anxiety, foggy brain, coordination problems, concentration problems, not sleeping well, etc... So I called Dr. Powell and he said that I needed to back off the INH and "clean up" the endotoxini load.  Well the last three days I have laid off the INH and I thought I was going to die yesterday.  Okay maybe that is a little dramatic, but no really I felt like I was going to die.  I feel better on the antibiotcs than off, but feel terrible on the antibioticsi as well.  I have done everything under the sun and to be honest I don't think there is anything I can do, but suffer it out.  Does anyone know if getting on anxiety medication will help me with the anxiety????  I think for the most part I could tough this out, but the neuro stuff is WAY TOO MUCH!!!  It's funny I am also finding that old wound sites that I have had beforehand are starting to hurt.   Years and years ago I worked for Albertson's and I used to work in the "milk box" a lot and I got a mild case of carpal tunnel in my left hand it hasn't hurt in years and all of a sudden it's been hurting like crazy.  I also have been getting really sick to my stomache everytime I eat it's like I feel worse.  Does this ever lessen or get better because I don't know if I can do this much anymore if it's this severe (neuro stuff)?  I keep trying to look forward and remember that eventually I am going to get better, but I feel like I am drowning.  You know you try to prepare yourself for the worst case scenario and I definitely was not prepared for feeling this bad.  Anyone have any encouragement it would be GLADLY accepted and appreciated!!  God bless...

Toxic Porphyrias

An excellent study on porphyria produced by chemical exposure with comments on thee biochemestry of heme production and break down, and detailed discussion of the detectiona dn diagnosis of porphyria. Applies to assessing secondary porphyria from Cpn. Environmental Chemical Exposures and Disturbances of Heme Synthesis< William E. Daniell,1 Henry L. Stockbridge,2 Robert F. Labbe,3 James S. Woods,1 Karl E. Anderson,4 D. Montgomery Bissell,5 Joseph R. Bloomer,6 Ralph D. Ellefson,7 Michael R. Moore,8 Claus A. Pierach,9 William E. Schreiber,10 Ayalew Tefferi,11 and Gary M. Franklin2

Earlier Version of the Vanderbilt Protocol: Stratton, et al.

Please note: this is an earlier version of the Vanderbilt protocol developed by Dr. Stratton and his colleagues. It is here because it contains useful treatment info for reference. Please see Dr. Stratton's current protocol in the Cpn Handbbook. <

 

Vanderbilt University has some of the world's experts on Cpn, and has been testing antibiotic treatment especially with MSi. The Mitchell/Stratton, et al patent has highly detailed information about the testing and treatment they have developed, and can be found at this link<.

Reactions to Treatment: Endotoxins, cytokines, porphyria, etc.

Bacterial Endotoxini reactions, Cytokinei (immunei) reactions and inflammationi<

These are often casually referred to as “herx” reactions, or scientifically as “herxheimer-like” alluding to the Jarisch-Herxheimer reaction to bacterial toxins specifically from syphilis. All gram-negative bacteria, of which Cpni is one, have contain Lipopolysaccharide endotoxini which is released as a matter of course during infection and is partially responsible for the on-going symptoms of the infection. When these bacterial are killed en masse they release larger amounts of endotoxin causing significant symptoms during initial phases of treatment. If the amount of endotoxin exceeds the body's ability to get rid of it, these toxic effects can be life threatening. Even in less threatening amounts, the endotoxinsi and the resulting reactions can cause oxidative stress and damage to body organs.

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