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The importance of addressing pyroluria with chronic Lyme disease (and co-infections), MCAS (Mast Cell Activation Syndrome) and other chronic illnesses

August 5, 2022 By Trudy Scott 27 Comments

addressing pyroluria

Pyroluria is a social anxiety condition that responds well to zinc, vitamin B6, evening primrose oil and a few other key nutrients, typically resulting in resolution of social anxiety symptoms within a few weeks with the correct combination and dosing. However there is much more to pyroluria than meets the eye. Addressing this biochemical imbalance is crucial for recovery from chronic Lyme disease (and co-infections), MCAS (Mast Cell Activation Syndrome) and other chronic illnesses caused by heavy metal toxicity, mold toxicity, multiple chemical sensitivities and Ehlers Danlos syndrome (amongst others).

Dr. Neil Nathan, MD, author of Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness (2018), shares this about pyroluria and chronic illness:

This biochemical imbalance is surprisingly common in chronically ill patients, and missing this diagnosis (by neglecting to test for and treat it) also denies us the opportunity to provide a simple, benign treatment that can help quiet down patients’ already overstimulated nervous systems.

(Here is my Amazon link to his book, which is excellent)

For over 15 years Dr. Dietrich Klinghardt has been saying you won’t see success with Lyme disease without also addressing pyroluria. He has seen a correlation with all his patients with chronic illness and pyroluria.

Let me quote from an article by Scott Forsgren, FDN-P and Dr. Dietrich Klinghardt, MD PhD: Kryptopyrroluria (aka Hemopyrrollactamuria): A Major Piece of the Puzzle in Overcoming Chronic Lyme Disease (a Townsend letter article published in 2017):

Based on testing with a lab in Holland, Klinghardt has found the incidence of KPU [Kryptopyrroluria or pyroluria] in Lyme disease to be 80% or higher; incidence of KPU over 75% in patients with heavy metal toxicity (lead, mercury, aluminum, cadmium, and others) and in children with autism over 80%.

These are very significant percentages of the patient population with chronic illness that may benefit from a treatment program that addresses KPU.

They also state what has long been known when it comes to pyroluria: symptoms are made worse by stress and “chronic infections, such as Lyme disease, may themselves serve as a trigger for the condition (of pyroluria).”

When it comes to MCAS, an updated version of this same article states that:

Klinghardt has worked with biochemists in Germany that are beginning to link KPU with mastocytosis or mast cell activation syndrome (MCAS).

They have observed that KPU treatment repairs the heme molecule, which notably stabilizes the mast cells and lowers the response to these relative rises in histamine.

I use the term pyroluria in this article, throughout my blog and in my book. It was coined by Carl Pfeiffer, MD PhD in the 1970s (after its discovery by Abram Hoffer in 1958). You’ll see these other terms used in various articles and in some of the older research: kryptopyrroluria (KPU), hemopyrrollactamuria (HPU), pyrrole disorder, mauve factor and sometimes malvaria.

As I shared in my interview with Dr. Kelly MCann on the summit, The Many Manifestations of Mast Cell Activation, it would be wonderful to get the terminology standardized and to get some case studies published. This would allow it to gain more acceptance in the mainstream and in functional medicine.

These papers, Discerning the Mauve Factor, Part 1 and 2, highlight some of the mechanisms as to why addressing pyroluria is so important:

  • “Treatment with nutrients – particularly vitamin B6 and zinc – reduces urinary excretion of HPL and improves diverse neurobehavioral symptoms in subjects with elevated urinary HPL.
  • Heightened HPL excretion classically associates with emotional stress, which in turn is known to associate with oxidative stress.
  • HPL correlated inversely with plasma glutathione
  • HPL is a promising biomarker for oxidative stress. HPL is known to cause non-erythroid heme depression, which lowers zinc, increases nitric oxide, and increases oxidative stress.”

The Forsgren/Klinghardt article above, covers additional mechanisms. With regards to MCAS specifically, the pyroluria supplements – zinc, vitamin B and evening primrose oil – all play a role in reducing histamine, providing immune support and reducing inflammation. And they provide nutritional support for the anxiety and mental health aspects of the condition – directly for pyroluria and indirectly via neurotransmitter support (since they are necessary cofactors for making serotonin and GABA).

Here is some of the research I gathered on some of the ways zinc, vitamin B6 and evening primrose oil (EPO) may help when it comes to MCAS:

  • This paper, Role of Zinc Signaling in the Regulation of Mast Cell-, Basophil-, and T Cell-Mediated Allergic Responses, states that “zinc signaling dysregulation is a leading health problem in inflammatory disease and allergy…. These findings may lead to future therapeutic applications for suppressing inflammatory or allergic responses.”
  • In this paper, Effect of pyridoxine on histamine liberation and degranulation of rat mast cells, the authors share that vitamin B6 “significantly inhibited rat mast cell degranulation and histamine release induced by egg albumin allergen.” This paper also discusses the lack of toxicity of vitamin B6 and “the possibility that other mechanisms of action may be involved, such as the improvement in tryptophan metabolism.”
  • This paper, Alterations of mast cell mediator production and release by gamma-linolenic and docosahexaenoic acid/DHA, was looking at mastocytoma (a type of mastocytosis) using a cell line as a model for canine atopic dermatitis (cells were incubated with the wasp venom peptide.) They found that “GLA decreased histamine release …and DHA diminished prostaglandin production.” Evening primrose oil is a source of GLA and fish oil is a source of DHA.

If you’re new to MCAS, Dr. Jill Carnahan has an excellent overview here: Mast Cell Activation Syndrome: Here’s What You Need to Know When Histamine Goes Haywire and I’ve blogged about PharmaGABA often being an issue and making anxiety worse when you have MCAS or histamine issues.

The ramifications of this biochemical imbalance are far-reaching

Here is the pyroluria questionnaire / symptoms list (from my book, The Antianxiety Food Solution). It has been updated with recently with additional conditions. You can read about pyroluria prevalence and associated conditions here.

Here are some of my pyroluria blog posts you may find useful (click each of the linked articles to read further). As you will see the ramifications of this biochemical imbalance are far-reaching:

  • Alice in Wonderland Syndrome – is there a pyroluria connection?
  • I was called a vulture for preying on sensitive people in a social anxiety group – because I mentioned pyroluria and a nutritional solution
  • Intrusive thoughts are a thing with anxiety: low GABA, low serotonin, pyroluria (low zinc & vitamin B6) and hormone imbalances as possible causes
  • Increased sociability improves vagus nerve function: the role of social anxiety, pyroluria and low zinc
  • Joint hypermobility / Ehlers-Danlos Syndrome and pyroluria?

Feel free to use the search feature on the blog to find additional information about pyroluria. I have written about it extensively. I have it myself and it’s really common – I see it in about 80% of my community – so I am pretty passionate about the topic.

Resources if you are new to pyroluria

If you are new to pyroluria, there is an entire chapter on the topic in my book, The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings. I highly recommend getting it and reading it before jumping in and using the pyroluria supplements on your own. And be sure to share it with the practitioner/health team you or your loved one is working with. We need the wider practitioner community to be aware of this condition and the importance of addressing it.

I use individual amino acids such as GABA and tryptophan with all my anxious clients and we always layer in the pyroluria protocol. There is also an entire chapter on the amino acids and they are discussed throughout the book in the sections on gut health, gluten, blood sugar control, sugar cravings, self-medicating with alcohol and more.

The book doesn’t include product names (per the publisher’s request) so this blog, The Antianxiety Food Solution Amino Acid and Pyroluria Supplements, lists the amino acids and pyroluria supplements that I use with my individual clients and those in my group programs.

If you are a practitioner, join us in The Balancing Neurotransmitters: the Fundamentals program. This is a paid online/virtual program with an opportunity to interact with me and other practitioners who are also using the amino acids and pyroluria protocol with success with their clients/patients.

Have you used the pyroluria protocol as part of your recovery from chronic Lyme disease or MCAS (or another chronic illness)?

Did you learn about this from your practitioner or elsewhere? (please share where)

If you’re a practitioner, is the pyroluria protocol part of your  plan for clients and patients? And has it been a game-changer for them?

If you have questions please share them here too.

 

The above statements have not been evaluated by the Food and Drug Administration. Products listed in this blog post are not intended to diagnose, treat, cure or prevent any disease.

The information provided on this site is for informational and educational purposes only and is not intended as a substitute for advice from your physician or other health care professional. You should consult with a healthcare professional before starting or modifying any diet, exercise, or supplementation program, before taking or stopping any medication, or if you have or suspect you may have a health problem.

 

The amino acids and pyroluria supplements I use with my clients

Additional Anxiety Resources
Click on each image to learn more

gaba quickstart live gaba quickstart hs

Filed Under: Lyme disease and co-infections, MCAS/histamine, Pyroluria Tagged With: Alice in Wonderland Syndrome, Balancing Neurotransmitters: the Fundamentals program for practitioners, chronic illnesses, chronic Lyme disease, Dr. Dietrich Klinghardt Kryptopyrroluria, Ehlers-Danlos Syndrome, evening primrose oil, heavy metal toxicity, Hemopyrrollactamuria, intrusive thoughts, KPU, lyme, mast cell activation syndrome, MCAS, mold toxicity, multiple chemical sensitivities, pyroluria, social anxiety, vagus, vitamin B6, zinc

About Trudy Scott

Food Mood Expert Trudy Scott is a certified nutritionist on a mission to educate and empower anxious individuals worldwide about natural solutions for anxiety, stress and emotional eating.

Trudy is the author of The Antianxiety Food Solution: How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood and End Cravings and host of The Anxiety Summit now in its 6th season and called a “bouquet of hope.”

Trudy is passionate about sharing the powerful food mood connection because she experienced the results first-hand, finding complete resolution of her anxiety and panic attacks.

Reader Interactions

Comments

  1. Lisa says

    August 5, 2022 at 3:30 pm

    Would you avoid copper infused clothing items with pyroluria?

    Reply
    • Trudy Scott says

      August 5, 2022 at 8:50 pm

      Lisa
      Great question! I do like the antimicrobial aspects but I don’t know much about copper infused clothing and any possible adverse impacts. Given that we can absorb minerals and toxins through our skin I’d be wary of the impacts for everyone and especially for someone with pyroluria (and high copper/low zinc).

      I would want to see research that tests for changes in copper and zinc levels. This paper (https://faseb.onlinelibrary.wiley.com/doi/epdf/10.1096/fj.04-2029fje) states “Copper is considered safe to humans, as demonstrated by the widespread and prolonged use by women of copper intrauterine devices (IUDs).” This is not a true statement – many women who use copper IUDs have major issues with copper toxicity.

      Please do share more about why you use copper-infused clothing and what you have found. Also what items do you wear and how often?

      Reply
  2. Ela Short-Conner says

    August 5, 2022 at 6:18 pm

    Dr Kelly Brogan did extensive research on this idea of chemical imbalance and found it was all bogus marketing by big pharma. There is no chemical imbalance and she changed her whole practice after going back through all literature that she studied at MIT.

    Reply
    • Trudy Scott says

      August 5, 2022 at 8:12 pm

      Ela
      Based on my work and experience, the chemical imbalance theory that has been recently disputed and published in the Joanna Moncrieff paper relates to low serotonin and SSRIs/antidepressants only – The Serotonin Theory of Depression https://pubmed.ncbi.nlm.nih.gov/35854107/.

      This is very different from biochemical imbalances that are root causes of anxiety and mental health issues, and can be resolved with a nutritional psychiatry approach.

      One example of a chemical imbalance is actually low serotonin – which is why tryptophan, 5-HTP, curcumin, saffron, addressing the microbiome and addressing diet/gluten removal etc are so effective for worry-type/ruminating anxiety. Other examples where we see chemical imbalances include Lyme disease, MCAS and pyroluria which I address in this blog. Also, thyroid, adrenal and sex hormone dysfunction are all chemical/biochemical imbalances that can affect anxiety and mood. I list many others here – 60+ Nutritional & Biochemical Causes of Anxiety https://www.everywomanover29.com/blog/60-nutritional-biochemical-causes-of-anxiety/

      I believe you’ll find Dr. Kelly Brogan supports all of the above. Her bio on her site states: “She is specialized in a root-cause resolution approach to psychiatric syndromes and symptoms.” But if you have a blog post of hers that supports what you’re saying please do share it.

      This is central to the work I do and it concerns me that this study, it’s interpretation and acknowledgement by many practitioners without teasing out the nuances (as above) is leading to so much confusion in the world of nutrition and functional medicine. I’m working on a new blog post to address this so please stay tuned. I plan to use your comment because I feel it reflects what many are thinking and we need clarity – so thanks for posting here.

      Reply
  3. Jay says

    August 6, 2022 at 4:27 am

    Hi!
    In pyroluria protocol, does one need to take evening Primrose oil if one is taking Borage oil? Is there something unique to Primrose oil? I take Barlene’s Total Omega which has Flaxseed, Borage, and Algae oil, and is said to have 400mg of GLA, and 1120mg of LA per serving.
    Thanks!
    Jay

    Reply
    • Trudy Scott says

      August 7, 2022 at 2:42 am

      Jay
      Either evening primrose oil or borage oil is fine. Keep in mind pyrolurics often don’t need to supplement with omega-3s as they can extract it from their diet. Fatty acid testing confirms the need.

      Reply
      • Jay says

        August 10, 2022 at 5:08 am

        Thank you for your reply!
        I so appreciate your help.
        Jay

  4. Deb Maccabee says

    August 6, 2022 at 9:26 am

    Trudy, I’m so grateful for all you provide us and your never ending curiosity. I’m an extrovert and social so I’ve never related to pyroluria. Recent diagnosis and beginning tx for Epstein Barr and MCAS and chronic dental infection. Your blog makes me rethink starting the pyroluria tx protocol. Anything else you suggest? Please continue to write about failed root canals and chronic infection. Mine was active for 20 years and the corrective surgery was very helpful, but did not resolve all issues in my 70 year old body. Blessings to all.

    Reply
    • Trudy Scott says

      August 7, 2022 at 2:34 am

      Deb
      I suspect the pyroluria protocol/questionnaire will eventually be renamed with less emphasis on the social anxiety/introvert/extrovert aspect as these nutrients are key for healing all conditions – like Epstein Barr, MCAS and chronic dental infection. I would discuss the protocol with your practitioner. And share my book, “The Antianxiety Food Solution”, with them if they are new to pyroluria. I have an entire chapter on pyroluria – testing, supplements and nuances. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/

      I am curious to hear if you resonate with any of the other symptoms on the pyroluria questionnaire?

      Sorry to hear about your failed root canal and chronic infection but glad you’re getting some of it addressed. And do tune in to the MCAS summit for other insights you may gain. Mold toxicity seems be a big one with MCAS.

      Thanks so much for the kind words and yes I do have never ending curiosity!

      Reply
  5. Linda says

    August 6, 2022 at 8:35 pm

    I have both pyroluria and EDS, vascular type. I didn’t know there was a connection until I went for treatment for EDS at the Biologix Center for Optimum Health in Tennessee last summer and they told me they didn’t even consider pyroluria a separate thing, just part of EDS.

    Reply
    • Trudy Scott says

      August 7, 2022 at 2:27 am

      Linda
      It’s wonderful to hear that they acknowledge the importance of addressing pyroluria with EDS. I’d love to hear if you feel it’s helped with your EDS symptoms and how it’s helped with your social anxiety and other pyroluria symptoms? Also, did they have you review the pyroluria questionnaire/symptoms list and then do the urine test? And what supplements did they recommend?

      I actually blogged about pyroluria and EDS here https://www.everywomanover29.com/blog/joint-hypermobility-ehlers-danlos-syndrome-pyroluria/ and here https://www.everywomanover29.com/blog/social-anxiety-caused-by-pyroluria-oxytocin-the-vagus-nerve-pectus-excavatum-and-ehlers-danlos-syndrome/

      There are a number of speakers addressing Ehlers Danlos Syndrome on the MCAS so I’m sure you and others will find it invaluable.

      Reply
    • Bobbie says

      September 11, 2022 at 6:17 am

      I want to know which comes 1st, the pyrrole disorder or the EDS. I wonder if doing a pyrrole supplement protocol would alleviate the horrible EDS symptoms so a person can live their life more normally and not suffer!!

      Reply
      • Trudy Scott says

        September 12, 2022 at 2:25 am

        Bobbie
        Likely both because of genetics but stress can make pyroluria more severe which may then impact EDS. The pyroluria protocol often helps alleviate some of the EDS symptoms. More on that here https://www.everywomanover29.com/blog/joint-hypermobility-ehlers-danlos-syndrome-pyroluria/

  6. KPU says

    April 26, 2023 at 9:05 am

    Hello,
    If one tested positive for pyroluria a few years ago, would the results still be the same if supportive supplements weren’t taken, ie. can the condition somehow correct itself? I don’t want to go through the testing again if possible.
    Also, I can’t find any studies supporting the use of GLA for pryoluria- do you have access to some?
    Thanks, very helpful work!

    Reply
    • Trudy Scott says

      April 28, 2023 at 1:51 am

      KPU
      Yes pyroluria is a lifelong condition that does require supplementation. I share all the information I have on pyroluria in the pyroluria chapter in my book “The Antianxiety Food Solution”. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/ I also cover all the nutritional aspects for helping to ease anxiety

      Reply
  7. Patrice says

    June 3, 2023 at 7:33 am

    Hi Trudy,
    I sent you an FB message and you asked me to post the information here.

    Through my adulthood I have had slight acne, a pimple or two on my face most of the time. A Naturopath had told me in the 2000’s that it was due to ‘detoxing’. I now know that is not true. About 1.5 years ago I started getting acne all over my forehead and cheeks, like a rash of little red bumps. I went to a Dermatologist and she told me it was rosacea, ‘adult acne’ and they don’t know why and that an antibiotic might help. It did make it go away as long as I took the antibiotic, but I did not want to be taking an antibiotic. I found a topical antibiotic (over the counter) helped a lot, but I did not want to be using that forever.

    I recalled Trudy Scott’s posts on ‘Histamine Intolerance’, which I had never heard of (despite over 35 years of searching for health answers and reading lots of articles and books and watching health series online). I didn’t know what Histamine Intolerance is, and didn’t think it applied to me. But I knew I associated the word histamine with allergies. Could my face rash be an allergy? So I looked up Histamine Intolerance and found several great articles in lots of detail about it. I found that our body makes DAO (diamine oxidase) as a natural antihistamine to break down the histamine we get in our food (and that our body makes). I found DAO supplements on amazon.com (over the counter) fairly inexpensively. So I bought a box. I started taking 1 a day, then after a few days went to 2/day. Within 5 days my face was nearly clear!!!

    Over a month later, I am still taking the DAO and have NOT changed my diet. When I don’t take enough DAO (2 or 3), I get a few pimples. When I do take enough, I don’t get them. Note that taking 2 or 3 a day gives me constipation. This has confirmed for me that I do in fact have Histamine Intolerance, and it appears to be due to my diet.

    Chocolate seems to be the worst effect. See great articles online of what are high histamine foods vs low histamine foods. All fermented foods have high histamine, so does avocado, almond milk, peanuts, all frozen/prepared foods, left overs, lunch meats, aged meats, etc. The bacteria in the foods creates histamine. So fresh food has less histamine.

    I recently told my 23 year old son about this and bought him a box of DAO to try, because he had severe acne as a teenager and still has some breakouts routinely. His acne is clearing up too by taking the DAO!! This means he too has too much histamine and not enough DAO in his body. It’s from his diet too.

    I have further read that many people with histamine intolerance also have MCAS (Mast Cell Activation Syndrome) and it appears I may have that too due to some of my symptoms. I look back at my mother and various symptoms she had in her life and I see she must have had histamine intolerance and likely MCAS, too. One serious symptom she had was sores in her mouth. She had these for over 5 to 10 years at the end of her life and it was terrible…..it was hard to eat foods that caused the sores to hurt. A Dr told her it was due to stress. NO. It was due to histamine intolerance or MCAS or both. This is one of the many symptoms people can have. Other symptoms: insomnia, sensitivity to light and loud noise (I have this and always wondered why), sneezing 6+ times, can’t walk down the detergent isle of a grocery store without feeling uncomfortable and hating the smell (or being around any chemical smells), itchy skin in response to foods I eat, runny nose after applying makeup or eating high histamine foods, watery eyes in response to cool temperatures outside….etc. ALL of these are due to histamine intolerance or MCAS.

    I hope this helps others with acne (I now suspect anyone with acne of any kind likely has histamine intolerance) and any of the other many symptoms find their solution. And one last comment……the dermatologist did not know anything about Histamine Intolerance or MCAS. But I told her about it. She said it could be due to the caffeine. NO, it absolutely is not due to the caffeine for me. Will she look it up online as I suggested? Will she recommend her patients with acne try DAO?? I hope so.

    Reply
    • Trudy Scott says

      June 4, 2023 at 1:08 am

      Patrice
      Thanks so much for coming and posting here – this will give others with acne triggered by histamine issues/MCAS so much hope. So glad to hear it’s helped you and your son! And I do hope your dermatologist is open.

      Reply
      • Patrice says

        June 4, 2023 at 7:16 am

        You’re welcome Trudy. THANK YOU for all that you do and for making me aware of histamine intolerance. I now think this (and MCAS) are likely at the heart of the main health problems I have had for most of my adult life. I have found several solutions to health problems and now to find this, it is amazing. I have cured my migraines (and those of several other people), I have regrown the cartilage in my knees and reversed the impingement in my shoulders, I found the solution to my extreme irritability, and several other issues. If anyone wants more info on any of this, feel free to comment here and ask and I’ll be happy to reply. Again, THANK YOU TRUDY!!

  8. Patrice says

    June 4, 2023 at 7:29 am

    Oh, and I forgot to add to my comment above, that I have just recently realized fully the power of Vitamin C. See Dr Thomas Levy’s book on Vitamin C. A dear friend has had severe asthma, psoriasis plaques, and pain in his fingers for years. He was in the emergency room a few weeks ago twice for his asthma and they put him on prednisone. But he still was having problems with the asthma and spitting up lots of mucus. I told him to try this: take 1 gr of vitamin C (with citrus bioflavinoids) every 30 minutes while awake until and unless he gets loose stool. He did this and it took over 2 days for him to get loose stool. Then he cut back for a day and then resumed. His asthma started improving immediately and so did his skin plaques AND HIS FINGER PAIN!!! His finger pain is nearly gone, his plaques are shrinking, and his asthma is improving daily. After nearly 2 weeks on the vitamin C he is taking 500mg every 30 minutes with no loose stool. Dr Levy tells the story of how he cured his own pneumonia by taking 1 gr of vitamin C every 6 minutes. It took about 3.5 hours to end his pneumonia. I never forgot his story. So……my friend’s use of vitamin C has helped all these major problems he has. When he told me what he eats I asked him how he gets his vitamin C? He wasn’t getting anywhere near enough vitamin C, especially given his health challenges which require even more. Our body turns vitamin C into hydrogen peroxide, which our macrophages use to destroy pathogens…..without vitamin C we die, without enough vitamin C we slowly die from all kinds of health problems. We all know what scurvey is…..but few know that likely many of our health problems are due to a simple lack of vitamin C.

    Reply
    • Trudy Scott says

      June 7, 2023 at 6:49 pm

      Patrice
      Thanks for sharing this too. One big caution with high dose vitamin C is oxalate issues. Many vitamin C experts don’t believe it happens but it’s a very real issue for some. More here https://www.everywomanover29.com/blog/vitamin-c-causes-oxalate-formation-resulting-in-pain-anxiety-and-insomnia-when-there-is-a-defect-in-ascorbic-acid-or-oxalate-metabolism/

      Reply
      • Patrice says

        June 8, 2023 at 7:24 am

        Thanks for that feedback Trudy. I’ll keep that in mind when mentioning Vitamin C to people and to my friend.

  9. Patrice says

    October 28, 2023 at 8:06 am

    Hi Trudy,
    I had another health breakthrough recently. It too is related to MCAS and histamine intolerance, which I discussed in some comments above previously, as well.
    This past week I started taking Ginseng (Panax) 200 mg x2/day to see if it gave me more energy or any other health benefits. Within about 3 days, my facial acne/rash (due to histamine intolerance, as I mentioned above) started clearlng up dramatically. I looked up ginseng and found that it reduces MCAS, which in turn reduces histamine! I had no idea this was the case when I started taking it.

    When you use ginseng, it reduces the amount of histamine your mast cells make, which is in your blood. When you take DAO supplement orally, as I have been doing daily for over 6 months (as mentioned in comments above), it reduces the histamine only in the food in your GI tract. The DAO supplement does not get to your blood.

    So now I know I have an MCAS issue, which I thought I might, but hadn’t looked to see what to do about it. Now I will. And I hope to try getting off the DAO supplement and find out why I have MCAS.

    One thing to note is that taking 200mg of the ginseng (I’m using the Paradise brand of Ginseng+, which also has a few other items in it) works well, and taking 2x200mg/day works better, but 2 a day disturbed my sleep, which I corroborated online that that is a possible reaction. So I have cut back to 200mg/day. And regarding the DAO, if I take 1 tablet, it helps my acne a lot, but 2 tablets helps better (1 am and one late afternoon with meals), but 2 tablets gives me constipation….which I can’t handle, so I have cut back to 1 tablet.

    Note too that in looking up Ginseng, I found this article/link below, which shows a connection between MCAS and depression and anxiety! Which fits right in with all the work you do Trudy.
    https://www.psychologytoday.com/us/blog/holistic-psychiatry/201907/mast-cell-activation-syndrome-alert-psychiatrists

    I suggest everyone look up MCAS and Histamine Intolerance and find one of the several good articles online that explain them and their typical symptoms and what you can do to improve them. If you find you have any of the symptoms (such as acne, or psoriasis or itchy skin or sores in the mouth or depression/anxiety, etc), I suggest you buy some DAO (I use NaturDAO tablets) and try 1/day with a meal and see if any of your symptoms improve. If they do, you likely have histamine intolerance. Then I suggest you try taking 1 of 200 mg/day of Panax Ginseng (or Red Ginseng, aka Korean Ginseng) and see if that improves any of your symptoms. If it does, you may have MCAS issues. Which means you may have found a big part of the answer to some of your health issues, as I have.

    I hope to be acne free very soon, after 2 years of fighting non-stop facial acne and a life time of constant minor amounts of acne. I believe I have had MCAS and histamine intolerance since I was a teenager and never knew what it was.

    I hope this helps other….especially any teenagers with acne or depression. Please pass this on to any teenager you know with such issues.
    Patrice

    Reply
    • Trudy Scott says

      November 4, 2023 at 12:24 am

      Patrice
      Wonderful results – thanks for sharing here

      Reply
  10. Paula says

    February 9, 2024 at 12:50 am

    Hi Trudy, I hope you don’t mind me messaging. I’m enjoying your book and finding this page so helpful. Thank you! One of the things I’m intrigued about is Pyroluria. My son has PANDAS and high social anxiety. His Zinc level is low, and every time we have tried to supplement he really, really struggles. His B6, however is high. But I am wondering if the B6 may not be being absorbed. There is obviosly a lot of inflammation (1600 strep titres 12 months ago, 700 in November after months of Azithromycin). His gut is a mess. He was born premature, and was on Movicol (Macrogol in US) for months when 5 years old. He also changed overnight after anaesthetic when 5 years old. We now know that he has MTHFT c677T and was also given NO alongside the anaesthetic which was when he changed overnight. PANDAS diagnosed last Feb. But undiagnosed for years. He wakes every night, is hyper vigilent and has many phobias and severe anxiety and OCD. We have just started GABA calm last night and NAC today. Sorry. This is a ramble and too many things covered. ANy advice very greatly received! Paula.

    Reply
    • Trudy Scott says

      February 12, 2024 at 1:07 am

      Paula

      Gosh your son has a lot going on. With waking, severe anxiety, OCD and phobias I typically start with serotonin support but when there are low GABA symptoms we do a trial of that too – one new supplement at a time to figure out the ideal dose. With waking hypervigilent we also look at low blood sugar https://www.everywomanover29.com/blog/waking-with-a-jolt-feeling-shaky-and-anxious-low-blood-sugar-hypoglycemia-glutamine-and-eating-for-blood-sugar-stability/ and high cortisol https://www.everywomanover29.com/blog/seriphos-to-lower-high-cortisol-help-prevent-an-adrenaline-type-surge-and-waking-with-anxiety-and-panic-your-questions-answered/

      With zinc I have clients who struggle (like nausea) experiment with different forms. I don’t use serum vitamin B6 as an good indication of B6 status – and keep in mind B6 is key for reducing inflammation.

      I assume you’re working with a functional medicine doctor to address the PANADS/infection but so much of the mood/sleep symptoms can be resolved at the same time with the amino acids and pyroluria supps. And the pyroluria supps help with recovery from chronic illnesses like this.

      Reply
  11. Michelle says

    December 13, 2024 at 9:48 am

    Trudy, do you empirically treat w/ EPO in your pyroluric patients? Do you check an omegacheck test to see if they also need omega 3s?

    Reply
    • Trudy Scott says

      December 23, 2024 at 6:30 pm

      Michelle
      As a nutritionist I don’t treat anything 🙂 but do recommend EPO to all my clients with pyroluria. This is based on years of fatty acid testing confirming the need. If they are not consuming wild fish or grass-fed red meat I do recommend fatty acid testing and from time to time a need for omega-3s shows up.

      I’d love to hear your approach and what you’ve observed?

      Reply

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