Last week I blogged about the social anxiety condition called pyroluria (Pyroluria, high mauve, pyrrole disorder, malvaria, elevated kryptopyrroles and social anxiety) and received some great comments on this and the other pyroluria blogs.
One question on this blog: The Anxiety Summit: How zinc and vitamin B6 prevent pyroluria and social anxiety was related to Chronic Fatigue Syndrome/CFS so I’ve decided to share this and some additional information I was able to find.
Hi Trudy, I’m calling from Melbourne Australia, I was wondering if you have had any of your clients present with Chronic Fatigue Syndrome as well as pyroluria. I have just recently been diagnosed with CFS, I also have ADHD. Someone on a CFS forum that I belong to told me about pyroluria and said it is common in ADHD and CFS sufferers. While the link between ADHD and pyroluria is well documented, I haven’t been able to find any information regarding a connection between Chronic Fatigue Syndrome and pyroluria. I notice that there is an overlap of symptoms in the two conditions. I have all of the symptoms of CFS and many of the symptoms of pyroluria. I’m very interested in hearing your views about CFS and how it relates to pyroluria if at all. — Tom
I was not aware of a CFS/pyroluria connection until now but see there is some research showing how CFS and mood disorders/anxiety can have related causes and one of them is inflammation:
Low zinc is a factor in pyroluria and depression and of course we may also see low zinc in CFS:
I find this paper very interesting since many of these same nutrients are commonly low in folks with anxiety and depression: Nutritional strategies for treating chronic fatigue syndrome
A detailed review of the literature suggests a number of marginal nutritional deficiencies may have etiologic relevance. These include deficiencies of various B vitamins, vitamin C, magnesium, sodium, zinc, L-tryptophan, L-carnitine, coenzyme Q10, and essential fatty acids.
I’m surprised the above paper didn’t mention iron anemia. This is very common with pyroluria. This paper: Iron insufficiency and hypovitaminosis D in adolescents with chronic fatigue and orthostatic intolerance found this
In patients presenting with chronic fatigue and/or orthostatic intolerance, low ferritin levels and hypovitaminosis D are common
These are just a few of the links I found by doing a very quick pubmed search. There are likely many more.
Everything is so connected and inter-related! And it’s interesting how certain deficiencies can manifest in certain ways – one person may find themselves with a CFS diagnosis, someone else with arthritis and yet someone else with heart disease. I think we need to be thinking about addressing nutrient deficiencies, balancing biochemistry and getting healthy, perhaps more just than addressing a diagnosis.
If you score high on the Pyroluria Questionnaire I would suggest simply addressing the pyroluria which may have some ripple down effects and actually improve the symptoms of CFS.
Now the next post will have to dig into the link between ADHD and pyroluria. Stay tuned.
In the meantime, I’d love to see your comments/questions if you can relate to any of this. Also, please do share in the comments if you know you have pyroluria and find the nutrients have eliminated your social anxiety and inner tension symptoms, and have also helped your CFS.
Hi, it took many years of trying to improve my low thyroid symptoms, before getting Pyroluria diagnosis. It has then take a good two years to get to a stable point. It is a constant battle of balance, trial & error. I encourage people to research & tune in to what their body needs. I have found less is better with a more balanced supplementation program. I cut my Pyrrole Primer to one from two, and added a multi B. Seems much better. But then ran out of the multi B for about two weeks. It then takes a while to get back to feeling better again. The anxiety is easy to rise.
Kaye
Thanks for sharing – you are so right – we are all unique and need to find what works for us. May I ask what Pyrrole Primer is/what is contains? In find that doing individual nutrients (zinc and vitamin B6) often makes it easier to mix and match and find the right combo
Trudy
It is so cool seeing how excited you get when you learn new things and make new connections on your path! Bless you! XO, Katherine.
This is pretty overwhelming to an outsider who would have no clue what could help them feel so much better. I’m glad that your blog posts always explain and provide what could be life changing to someone, Trudy.
Trudy, several years ago we had a close family friend who was very much into zinc as a cure all for many illnesses. I take it now at the first sign of a cold. Thanks for the information.
Zinc is a very under-rated and very needed nutrient for many conditions – immunity is one of them
Thank you for posting!! Everytime someone talks about pyrroles or CFS it makes me so happy! Doctors don’t know about either and it becomes frustrating. After years of seeing doctors for a mystery illness my neighbour told me about pyrroles and within days I felt 50% better- the diagnosis of pyrroles has been life changing. My doctor’s gave up on me at 19yrs old, I’m glad natural medicine hasn’t given up on me (now 25yrs old).
Thanks for this information Trudy. I was diagnosed with Chronic Fatigue in 2010 and then mid 2013 I was also diagnosed with pyroluria. I have been on a nutritional program for pyroluria since that diagnosis and it took over 12 months before I started to see an improvement. It took a long time before my zinc levels rose. I am on iron and vitamin D as well. I also have autoimmune issues and hypothyroidism. I started doing transcendental meditation last year and that has helped with the stress and anxiety immensely especially in easing the constant tension I seemed to be holding in my jaw.
Thanks again for sharing this information Trudy, I appreciate you.
Ruthie
Thanks for sharing your healing journey. Glad to hear you are doing better and that the transcendental meditation has been so helpful for you – it’s a wonderful “tool” for anxiety and stress!
What a pity it took so long for the zinc levels to rise and for you to see an improvement. This can be related to very high copper levels (which can also affect fatigue), being low in omega-6/GLA (were you taking evening primrose oil? – this enhances zinc absorption) and even low iron levels.
I’d be curious to hear how much zinc you were on and what form? and how much vitamin B6 and what form? and if you did take EPO? and did you have any copper in any of your supplements or know your copper was high (blood test – copper/ceruloplasmin, or hair analysis)?
Trudy
Hi Trudy,
I’m pretty sure the doctor tested my copper levels at the beginning but I can’t remember what the results were. Not sure how much Zinc I was on but my dose has now been reduced to 130MG and it is Zinc as Picolinate (this is in my PM capsule). I do take 2 x EPO capsules every day and I take 120MG of P5P (this is in my AM capsule). I will ask the doctor next time I’m there what my copper levels are.
Thanks again
Ruthie
Ruthie
You’d want to have your doctor test copper and ceruloplasmin. You are on very high doses of zinc and P5P!
Trudy
Trudy,
The powers of the ‘elements’ are amazing.
The more we stray off the path into processed
foods and solutions the more we create other
issues. Good to see how much you help people!
So true Mitch
Great information. This just highlights again, for me, that autoimmune disease is a spectrum type disorder. Yet we insist on segmenting each disease. It’s fascinating to see all the links you are able to pull together.
Thanks Mira – it is amazing to me how many links we can find. I really like how Dr Tom O’Bryan, host of the Gluten Summit, says gluten attacks us at our weakest link. This seems to be the case across the board
Trudy THANK you very much for your valuable information. I am trying to help my son he is 18. Every day he has to take a nap after school otherwise he will not be able to do homework. Would you please let me know where he can be tested for pyroluria? I got Zinc orotate and a B complex.
PLEASE HELP!
Hi Edy-I used DHA laboratory for pyroluria testing for my son.
Thanks Tammy – may I ask if the results correlated with his symptoms and how high he scored on the questionnaire?
I would like to add that even this lab, as do most of them, has false negatives so I would also always use the questionnaire and response to supplements
His kryptopyrrole level was 27. He has exhibited at least 20 of the most common signs and symptoms listed and several of the less common (very crowded upper teeth, constipation, sparse eyebrow/eyelashes, focusing internally, puffy face under stress). He is 13 and tested about 7 months ago. He has always been low energy, pale, low motivation, socially anxious- but when he was 12, he started telling me he was depressed. For the previous 5 years, I had been seeing a women’s heath practitioner to figure out why my health was declining – she focused on adrenals, thyroid, and hormone health which helped some, but I still did not feel well. During those years I joined different facebook groups to read and learn on those three areas and it was there that I saw an article on pyroluria (I’m a RN of 22 years and never heard of it). I felt an immediate sense of relief after reading that first article and felt strongly that we would test positive. Looking back to my childhood, I was very pale, always the first to bed at night, very prone to motion sickness, always just a little dizzy/nauseated. When I was 7-10 years old I would have evenings (especially Sunday evening when I had to go back to school on Monday morning, or if I had missed a coulple of days of school due to sickness) that I would be so scared to go back to school/anxious to walk back in classroom full of kids – I would cry and tell my mom that I was afraid of something but didnt know what, she would always pray with me and I would push on through it. I think just in the last year (I’m 44 now) have I realized that that was anxiety- I’ve had this constant inner tightness (for lack of a better word) my entire life, but I’ve always had a very normal, calm demeanor. I was a L&D nurse for 20 years and stopped a couple of years ago- what I now know was anxiety had reached an all time high and I could not perform any fine motor skills without shaking (starting an IV, signing my name, getting a spoon to my mouth, putting on mascara) I could go on and on….. My kryptopyrrole level was 26 – My son and I both saw a Walsh trained practitioner in April- began supplements- I felt better IMMEDIATELY, and he got a little worse for the first four weeks (depression wise) and then began feeling better. I would venture to say that this is the best I have felt my whole life!! It has been a journey to say the least, and still learning everyday – after about 4 months of supplement I could tell that my son and I were both not doing quiet as well (feeling a little anxious again) and we backed off on B’s some and it helped – just tweaking things now to see where we feel our best. Would like to better address our methylation status- my son and I had whole blood histamine levels of 20 and 22- the practitioner we saw said that he did not rely on that number for diagnosis- we have supplemented in very small amounts with methylfolate and niacinimde?? Just now getting started with addressing amino acids-I started on d-phenylalanine a couple of weeks ago and can tell a huge difference (more positive, energy, just feel more cheerful)- from reading your info on on serotonin, I think that would be my son’s area to start on- have ordered supps that you recommended- Very thankful for ones like you that put this information out to help others!!
The third story is that I have a 12 year daughter that has tested positive also at 30 and just beginning supplementation with her and already seeing improvements!!
Hi Trudy
Can I get tested for pyroluria at my western general practitioners office or should I be going somewhere more specific?
Any leads would be appreciated.
Thanks