Porphyria is a build up of toxins in the blood due to a heem pathway dysregulation. Porphyria are iron-containing heme which permits hemoglobin oxygen transportation in the blood. It is triggered by many things including fasting, genetics, nutrient imbalance, rapid detoxification, candida, Lyme, viruses, mold, heavy metals, glyphosate and other toxic insult. The technical name is Kryptopyrroles porphyrins, also referred to as Kryptopyrroluria (KPU).

This also triggers mast cell activation. Mast cells are types of white blood cells that help to regulate the immune system. Mast cells can determine how our bodies react to environmental triggers like sugar, pesticides, perfume, pollution, and other causes of inflammation.

Detoxifying for people with KPU must be done VERY slowly. Even the candida cleansing diet that removes sugars and processed carbohydrates can trigger a KPU response. The toxin release may also trigger an autoimmune response of PANS/PANDAS, since a Staphylococcus infection contributes to a build up of porphyrins. There is an accumulation of porphyrins and pyrrole pigments by Staphylococcus.

Some symptoms of kryptopyrroles porphyrins (KPU)

• Rapid triggered extreme anxiety from the removal of sugars and carbs
• heightened skin sensitivity, especially to sunlight,
• cannot tolerate fasting or intermittent fasting,
• panic attacks,
• bowel issues of either constipation or diarrhea,
• hallucinations,
• chronic pain,
• cannot tolerate low carbohydrate or low sugar diet/candida diet (until heem pathways are balanced),
• very low zinc levels. A common copper to zinc ratio imbalance.
• sleep disruption
• abdominal pain
• back pain

What to do for a porphyria triggered reaction

For the KPU to calm, the blood is needing some glucose, so a piece of fruit (for the sugar) should help. Since this situation is so delicate, it is alright to add in just a little carbohydrate too, temporarily, as it will help calm. In some extreme cases people are given a dextrose or glucose IV which slows the response in 10-60 minutes. A tablespoon or two of tapioca/dextrose can help calm by helping the sugar imbalance, but be sure there are no latex allergies (in the tapioca) or corn allergies (from the dextrose). This is only for severe cases. Try fruit first.

Iron supplements can make it worse because they increase inflammation and feed pathogens. Iron gets stuck in an inflammatory state so you may show either very high ferritin or very low.

Take trace and mega minerals. Among many things they help to open detoxification pathways.

Heem is iron based but plant sources of heem are not usually enough. Animal based heem foods are needed now. Some really good “heem” protein is unaged grass fed beef, or organic beef liver. You can also use organic poultry, shellfish such as clams, oysters and mussels, or line caught fresh fish such as halibut, haddock, perch, salmon or tuna. Avoid tuna due to high mercury levels.

Take some activated charcoal right away. This helps sop up the extra toxins in the system. Take it away from food for proper absorption of toxins.

Avoid sunlight. The UV rays will make the skin burn from the porphyrins that are built up there now. Skin may even blister in sunlight.

See the porphyria foundation’s drug data base to find the drug interaction of specific drugs in patients with Porphyria.

Testing

Symptoms may be your best guide. Some testing will not find it so subclinical KPU often gets ruled out by the practitioner, however, if symptoms are severe, then get tested from a reputable lab. The test to ask your practitioner for is a 24 hour urine collection from Labcorp: Porphyrins, Quantitative, Random Urine, TEST: 120980, CPT: 84120. Keep urine refrigerated during this test.

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