I recently received a question about the possible connection between joint hypermobility / Ehlers-Danlos Syndrome and pyroluria. It’s been on my long list of topics to look into, learn more about and write about because I also feel there may be a connection to pyroluria, a social anxiety condition. People with pyroluria can often relate to these symptoms: joints popping, cracking, or aching; pain or discomfort between the shoulder blades; or cartilage problems (likely due to low zinc levels).
So here goes, I’ll share what I know so far. I’d love to gather more information and am looking for feedback too so please do share your experiences in the comments.
Joint hypermobility syndrome is described in this British Medical Journal paper: by expert Professor Rodney Grahame:
Joint hypermobility syndrome (JHS), previously known as benign joint hypermobility syndrome (BJHS), is a heritable disorder of connective tissue that comprises symptomatic hypermobility predisposing to arthralgia, soft tissue injury, and joint instability. It is indistinguishable from the hypermobility type of Ehlers-Danlos syndrome.
Complications may include autonomic dysfunction, proprioceptive impairment, premature osteoarthritis, intestinal dysmotility, and laxity in other tissues causing hernias or uterine or rectal prolapse.
Symptoms are often minimal or mild, but 168 out of 700 patients with joint hypermobility syndrome (24%) attending the UCH Hypermobility Clinic already had an established chronic pain syndrome at the time of their first outpatient attendance. These patients were experiencing serious pain, disability, and impairment of the quality of life, some patients becoming chairbound or even bedbound.
As reported in this Dec 2014 paper: United States Physical Therapists’ Knowledge About Joint Hypermobility Syndrome Compared with Fibromyalgia and Rheumatoid Arthritis despite the fact that joint hypermobility syndrome is one of the most common inherited connective tissue disorders, “many physical therapists in the United States are not familiar with the diagnostic criteria, prevalence or common clinical presentation.”
This is the actual request that I received from Catriona, one of my blog readers/facbeook followers:
I was wondering if you’d ever be interested on doing a post on Ehlers-Danlos Syndrome/Joint Hypermobility. I wonder whether many of your clients suffer from it and possibly don’t even realize. It’s a group of connective tissue disorders which had mostly been thought to affect only the joints, skin, skeleton and blood vessels, but it turns out that connective tissue is a necessary part of all organs and that there are much higher than expected incidences of anxiety, depression, chronic pain which is often labelled as fibromyalgia, gastrointestinal problems and more. I suspect a lot of people with EDS [Ehlers-Danlos Syndrome] also have pyroluria, there are high numbers of people having to deal with POTS [Postural orthostatic tachycardia syndrome] and MCAS[Mast Cell Activation Syndrome] and very high levels of disability with it. I think that having connective tissue in the gut that might be more prone to tearing and leaking might make dietary changes even more important, but might also be one of the things that results in less good responses to nutrient therapies. As well as that there are so many people with EDS on cocktails of medications for pain, sleep, anxiety, depression, reflux, IBS, menstrual disorders etc. and I can’t help but wonder whether all those medications are actually sometimes making things worse for some. Is it something you’ve come across much? Thanks.
There are a number of papers published in 2014 and 2015 linking EDS / Ehlers-Danlos Syndrome with psychiatric disorders. None mention social anxiety but anxiety is very common, as is depression.
Here is one paper that was published October 2015: Psychiatric disorders in Ehlers-Danlos syndrome are frequent, diverse and strongly associated with pain
Psychiatric disorders were found in 42.5 % of the EDS cohort, with 22.7 % of patients affected with 2 or more psychiatric diagnoses. Anxiety and depression were most commonly reported, with frequencies of 23.6 and 25.5 %, respectively.
This paper was published in April 2015, looking postal survey results from 250 members (over 18 years) of the Swedish National EDS Association: Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS): a questionnaire study
Of the respondents 74.8% scored high on anxiety and 22.4% scored high on depression on the HADS [Hospital Anxiety and Depression Scale]
This March 2015 paper: Psychopathological manifestations of joint hypermobility and joint hypermobility syndrome/ Ehlers-Danlos syndrome, hypermobility type: The link between connective tissue and psychological distress revised addresses generalized joint hypermobility and other disorders as well as anxiety:
Psychological distress is a known feature of generalized joint hypermobility (gJHM), as well as of its most common syndromic presentation, namely Ehlers-Danlos syndrome, hypermobility type (a.k.a. joint hypermobility syndrome – JHS/EDS-HT), and significantly contributes to the quality of life of affected individuals.
Interestingly, in addition to the confirmation of a tight link between anxiety and gJHM [generalized joint hypermobility], preliminary connections with depression, attention deficit (and hyperactivity) disorder, autism spectrum disorders, and obsessive-compulsive personality disorder were also found.
Of course the big question is which comes first ?
- the EDS and pain leading to feelings of anxiety and depression
- or the genetic factors that cause nutritional deficiencies affecting both connective tissue and contributing to anxiety/depression
I’d guess it’s likely a combination of both and that it’s going to vary by individual.
The website of the Ehlers-Danlos Syndromes National Foundation is an excellent resource for learning about the condition but interestingly they make no mention of psychiatric symptoms.
Here is some feedback I’ve received up until now, on my blog, about a possible connection to pyroluria:
- As you can see in this blog post: Pyroluria prevalence and associated conditions Thin Basement Membrane Disease (an inherited collagen/connective tissue disorder diagnosed via kidney biopsy) may be related to pyroluria. Someone contacted me during season 3 of the Anxiety Summit and said she has pyroluria and TBMD/Thin Basement Membrane Disease. She shared that the pyroluria protocol helped with her TBMD/Thin Basement Membrane Disease symptoms.
- Maruschka posted on the same pyroluria blog sharing this (slightly edited version): pyrrole disorder/pyroluria is big part of hypermobility, Ehlers Danlos syndrome 3 and mixed connective tissue disorder. 80% of us suffer with pyrrole in collagen issues. Often undiagnosed. Professor Rodney Grahame says every 5 people in 30 people we meet have it. Now there is a talk that hypermobility is induced by environment, so epigenetics could reverse it.
- Ali commented on this blog post: Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results saying she “immediately identified with almost all of the symptoms on your pyroluria questionairre, and ordered the test through Direct Health Care (the lab Dr. Walsh recommends). I ended up getting a mild positive urinary kryptopyrrole result .” She has also been “diagnosed with mast cell activation disorder (MCAD) and autoimmune disease (lupus, Hashimoto’s thyroiditis, celiac disease, Raynaud’s, interstitial cystitis), and Ehlers-Danlos Syndrome Type 3.” The pyroluria protocol does not seem to help her but she does have a great deal going on with her health.
- Candy commented on the above post too, saying she has been diagnosed with Ehlers Danlos Syndrome and relates to many of the pyroluria symptoms.
I received this feedback from a colleague, Dr. Josh Friedman, an integrative psychotherapist who uses amino acids and other nutritional approaches in his practice. (You may remember him from the Anxiety Summit season 1 and then he interviewed me in season 3
One thing that I have noticed in the few folks in my practice with EDS (small sample of 4-5) is that that they tend toward low cholesterol (below 160 total) and do well with cholesterol supplementation. They do suffer from anxiety and/or depression. It seems pyroluria is a factor in some but not others (I have used the questionnaire from your book).
I look forward to learning more so I can help more people with social anxiety and hopefully some of the symptoms that may overlap with joint hypermobility and Ehlers-Danlos Syndrome.
Have you been diagnosed with joint hypermobility or Ehlers-Danlos Syndrome? And do you have pyroluria? If yes we’d love to hear if the pyroluria protocol of zinc, vitamin B6, evening primrose oil and a good copper-free multi has helped?
If you have been diagnosed with joint hypermobility or Ehlers-Danlos Syndrome and have social anxiety, we’d love to hear how you score on the Pyroluria Questionnaire
What approaches (nutritional and otherwise) have helped you? And please do share additional resources if you have them.
The infographic made me say, Hey! I can do all those! Then I tried sms to see if I was remembering rightly, Ive never been diagnosed with the disorder. I am so stiff and pained I could only do some, but yes, I distinctly recall being able to all of them. Even with my horrifically fat belly I can still touch the floor flat-palmed.
Its amazing how Ive learnt to cope with my increasing pain and decreased mobility to the point I just ignore and modify around it.
Nothing works for me healthwise for my myriad conditions. Thats sad. They are why Im so unable to do the hypermobile things now, not that I have pyroluria or Ehler-Danlos.
Helen
Thanks for posting and I am sorry to hear about the pain and decreased mobility. I’m not sure what approaches you’ve tried for the pain but here are a few things to consider if you haven’t already looked into them: gluten-free? grain-free? oxalates? nightshades? gut health? low serotonin? low GABA? low endorphins
The story of my (squishy, stretchy) life! Hypermobility runs in my family. I have a positive diagnosis for hypermobility, but didn’t want to chase down the specialists it would take to diagnose EDS.
By the way Trudy, I answered ‘yes’ to about 75% of the questions on your Pyroluria Questionnaire. The B6 + zinc protocol enabled me to remember dreams for the first time in nearly 20 years.
I am now under the care of a functional medicine clinic and will do the test for pyroluria very soon.
Thank you so MUCH for spreading the word about pyroluria and EDS/hypermobility syndrome.
MaryLiz
You are most welcome and thanks for sharing your “squishy, stretchy” story here. Thanks too for sharing your pyroluria score and dream results. Have the supplements helped with the social anxiety? and any help with the hypermobility?
Just a quick heads up that the pyroluria test can be false negative so I rely on the questionnaire and positive response to the supplements.
Oh yes, I really think my social anxiety has lessened due to the B6 + zinc supplementation. When I have had to address a crowd, I no longer have that feeling like I cannot breathe. My voice doesn’t seem to tremble as much, or maybe it doesn’t tremble at all. I haven’t had many chances to try public speaking with the lessened anxiety. Frankly, I can’t wait to try it out again, out of curiosity!
As for the connective tissue laxity, I don’t think two months was long enough to make any difference. I had taken the B6 + zinc for only two months before starting to work with the new clinic. So now I’m on a new supplement routine, following their advice.
Honestly, I’m not sure I would want to give up the joint laxity completely. Being stretchy has its advantages, even if it means being too stretchy at times.
MaryLiz
Thanks for sharing about the lessened social anxiety and no more trembling voice. Wonderful!
I’m sure you know this but just making sure – if you have pyroluria being on the supplements is a life-long thing.
Hello Trudy!
OH my when I seen this I thought WOW, this is ME!!! (you remember me (house fire, 3 boys with autism 1 with OCD and a mom with mild dementia) Whew that’s a mouthful. LOL
Yes,I tested for many on your pyroluria and been taking the supplements which solves my anxiety as well as my shyness so I could get out in front of people!
But ever since I was young I could bend my thumb like that, I remember kids being freaked out. My DAD could do it too!
I still can do it. My knees and elbows are the worst though. So bend back SO much, I have to be careful that I don’t injure them. My elbows don’t hurt, but I’ve always had knee problems. Cracking and popping and bursitis in my knees. Now they are just painful alot. I’ve always wondered how to help my knees as I get older. I can sit on the floor with my legs stretched out and lift my FEET without lifting my legs! With my knees on the FLOOR!
And I tried to touch the floor and was shocked that I could do that one! I was shocked even though my hamstrings are kinda tight and I’m plenty plump. 🙂
I’ve never been diagnosed, but always wondered what was wrong with my knees and recently asked my natural doctor if it was related to low vitamin D as I’m pretty sure I had rickets as a kid. (I am 99% sure my mom told me but with her dementia she can’t confirm it now).
Anyhow, hope this helps! Thanks for giving a name to my joints! 🙂
Rita D
Rita
How could I forget you! And I know the pyroluria protocol helps with your shyness and speaking (love it!) I didn’t know about your hypermobility and didn’t know about this or EDS until just recently either. I have heard that many people take years to get a diagnosis so I’m not surprised you didn’t know.
Thanks for the very vivid descriptions – I can totally see this in my mind (I’d actually love to see some photos – really!)
It sounds like the pyroluria protocol has not helped with all this? or has it helped some?
A reader has already contacted me about someone who has a nutritional program for connective tissue restoration and at first quick glance it looks fascinating. I’ll be sharing more as I learn more so stay tuned.
Hi Trudy!
Oh that is funny you can SEE my vivid descriptions!
I’m a writer, so perhaps thats my descriptions are so good.
Pictures would be HA FUNNIER with my pudgy knees. LOL
I always thought it was my weight that just was hard on my knees. Perhaps it’s more?
I had bursitis as a kid that doctor used to drain with a syringe. It’s not near as bad as it used to be now. It’s mostly just painful if I get up from the floor for example.
It has gotten better over the years with my glutenfree, and perhaps the pyroluria protocol. Some days it’s great too. I finally have strength in my legs again after more than 10 years without it. (due to low iron and such)
I don’t mind a bit of pain, as long as it doesn’t affect our way of life as we age?
Thanks for all you do Trudy!
Rita 🙂
Rita
Your descriptions are excellent and your writing skills are too! Glad to hear the pain has gotten better with gluten free and “and perhaps the pyroluria protocol” – always hard to know when there are many factors.
But you know me – I’m all for not tolerating and zero pain pain so don’t stop looking for solutions – even a little pain means inflammation and is a message from your body. I know you are on your healing journey and that’s what it is…a journey
Hi Trudy,
Aww thanks for the compliment on my writing skills! 🙂
And yes, I know inflammation is a pre-curser to disease later, so I’m always looking for sources for what the pain is. I have definately gotten better but would love to be better, so I do take time to take MSM, and Tumeric…and whatever other solutions come by way..I’m always looking for improvement.
Thanks so much for all you do!
Rita 🙂
Hi Trudy
I am the person who contacted you with Thin Basement Membrane Disease. I thought you would like to know that it’s now been a year since I started treatment for Pyroluria and my proteinuria is back in the range for a normal person (without TBMD). So it seems the vitamin supplements have improved the connective tissue in my kidneys. I have also had popping joints in my hips, knees and wrists for many years. That has also improved over the last year.
Bridgette
Bridgette
This is so wonderful to hear – I’m thrilled for you! Thanks for coming back and sharing!
I assume the social anxiety symptoms have gone? You mention “popping joints in my hips, knees and wrists” – are your joints hypermobile?
Would you please share your protocol for others to see?
Hi Trudy. Sorry it’s taken so long to get back to you. My social anxiety has improved a lot, but still resurfaces occasionally when I am feeling particularly tired. No my joints are not hypermobile – just crack easily and frequently. I have been on very strong supplements for just over a year – gradually increased them. I am on 120mg of zinc pic, 190mg of magnesium glycinate, 135 magnesium citrate, 100mg of vit B6, 80mg of P5P, 2,000mg biotin, 500mcg of B12, 160 mcg of Chromium, 2500iu of Vit A, 150mcg selenium. I am feeling a lot better (more energy, sleeping better, thinking clearer), but strangely my plasma zinc and magnesium levels have not improved over the last 12 months. My Dr believes this is because I have leaky gut syndrome so I’m not absorbing the vitamins very well. Do you have any thoughts on what I could do to improve absorption? I’m not keen to try the gaps diet again – as I hate soup. But I’m happy to go sugar, wheat and diary free.
Bridgette
I’d look into glutamine and other nutrients for gut healing https://www.everywomanover29.com/blog/glutamine-healing-leaky-gut/ and try and identify what is contributing to leaky gut? Also adreanl support is key
This is so interesting. I have three siblings (we are adults now) and we all struggle with anxiety and a large percentage of the questionnaire. My sister had dislocated joints several times while growing up (from a slight tug on her arm) and has noticeably hyper mobile joints around her knees. My brother has had a huge struggle with anxiety since he was 2 years old and now struggles with alcohol abuse as an adult. I have a 5 year old daughter who has become nearly agoraphobic and is very attached to me (her mom, 36 years old). We have a great home life and there have been no traumatic events that point to a cause for her intense anxiety. I am very interested in treating her for pyroluria. Likewise, I have a gut feeling that treating this could change a pattern of anxiety passed down for several generations now (all with basically unknown causes….just an internal sense of unrest). Are you able to suggest a good protocol for children (age 5) or know where I can get more info on dosages for children? There is so much info out and it is a bit overwhelming! (Ironic how I feel overwhelmed as it is one of the symptoms of pyroluria!) I am wondering about copper being eliminated in large portions when zinc is given. Do you do phone consultations regarding children or are you able to recommend someone? Thank you so much for the life-changing work you do!
Jess
Thanks for your very kinds words! And thanks for sharing about you and your family. It’s super when we can connect the dots. I’m sorry to hear about your 5 year old. The pyroluria protocol can be life-changing for kids like this. I don’t have a kids questionnaire and protocol but am working on putting one together. In the meantime, for kids I suggest using 120lbs as the adult cut-off and halving the dose for 60-119lbs and using one quarter for under 60lbs. Copper dumping can be an issue but I don’t see it very often.
Of course all the basics go without saying: real whole food, healthy fats, protein (animal) at breakfast, no gluten, maybe grain-free, no sugar/colors/caffeine, addressing gut health/candida/parasites etc
And then I’d also look into low serotonin and consider tryptophan https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/ The overwhelm you mention could also be low serotonin 🙂
I do phone consultations but am full right now and have a waiting list – you can get on it here https://www.everywomanover29.com/services.html
You are so kind to respond to the comments on your blog. I have always noticed that you do that but have never commented before. So helpful!! Thank you for the guidance on dosing for children. Eating animal protein at breakfast has been HUGE for me. I am going to make certain she is getting animal protein at breakfast as well.
Wonderful Jess – that it itself can make such a big difference for kids.
And you’re so welcome!
Hi Trudy,
Are you still giving advice for IDS? I think this might be what my daughter has. Plz let me know how I can contact you.
Thanks for all this helpful info!!
Cat
Cat
I’m not sure what IDS is but feel free to contact my team at support@everywomanover29.com
this is really interesting Trudy – clinically, the women I see who have anxiety are typically hyper mobile, though not clinically dx with EDS (including myself!).
Thanks for sharing Angela – it’s all so interesting and learning about these correlations helps us put all the puzzle pieces together. Do you also see the pyroluria/social anxiety and hypermobility connection? I’m curious what nutritional approaches you have found that may help the anxiety as well as the hypermobility?
Thank you so much for looking into this Trudy.
I definitely have pyroluria, severe zinc deficiency, magnesium deficiency and overmethylation. I’m hypermobile and I’m awaiting a genetics appointment this week to see if I have EDS. I suffer from the anxiety, depression, insomnia and my blood pressure would often be on the lower side, and I usually develop swollen feet easily, get quite a few palpitations and extra heart beats, but I don’t have MCAD or PoTS.
An ancestral diet is great and I really don’t tolerate gluten, processed foods or much sugar. Eating liver regularly really helps, but I do better with about an ounce every day than a few ounces a couple of times a week. I think eating fish and oysters a few times a week helps.
The supplements that definitely make a difference are zinc, magnesium, iodine, vitamin D3, probably P5P, and K2 and I think activated B vitamins help, but I don’t think I do well with methyl B12, but take adenosyl B12, and I’m using Folinic acid (although my B vitamin has methyl B9 and B12). I think DMAE might help me too. Vitamin C definitely helps with infections. Prescript Assist seems to help too. I’ve tried a lot of other probiotics and I’m not convinced about the acidophilus types, but I think I have SIBO. I also make a lot of fermented foods. I haven’t noticed any obvious improvements with EPO or fermented cod liver oil. I’m going to try increasing my glycine to a few grams to see if that helps sleep.
Meditation seems to help. I’ve also been trying to do a bit of qigong. A lot of Pilates exercises help, but I should probably stay away from leg pull back. Yoga is not good for me. Body weight exercise works for me as well. I also walk a lot and find I have less pain in barefoot shoes than with arch support. Getting outside into nature helps.
I’ve started on some low dose naltrexone and am increasing it up, but I think it is helping too.
I tend to get side effects from medications, and I don’t tolerate alcohol at all well.
Catriona
Thanks for sharing and thanks for asking the question leading to me writing this blog! Please do let us know the results of your genetic testing.
Would you mind sharing your score on the pyroluria questionnaire and if you did the urine test and if it was positive?
Hi, Trudy.
I saw the geneticist at the end of last week. She didn’t do any testing, but gave me a diagnosis of EDS hypermobility type based on my symptoms. She felt that genetic testing and biopsying me would not have helped as there is currently no genetic test for the hypermobile type, and I don’t have enough skin laxity or skin involvement to have the classical type. I do require referral to cardiology, ophthalmology and physiotherapy for completeness, although it is very fairly likely that I have a mitral valve prolapse. Hopefully I don’t have POTs, although I do get very mild postural symptoms, but I’ve never fainted. She also thinks I need referral to gastroenterology for my unusually severe zinc deficiency, so I’m hoping that they will be able to identify and treat SIBO.
I found the paleo diet more than 5 years ago as a way to help manage my acne which has continued unabated from adolescence into adulthood. In retrospect I think the Ehlers Danlos is probably a key player in a lot of my issues, including triggering my pyroluria. Certainly puberty seemed to be when a lot of my symptoms started, including a fairly steadily worsening myopia, extremely heavy and painful periods, and a tendency to worry somewhat, although I was always a fairly shy, sensitive and introverted child. As a child I would have been a bit clumsy, tended to trip a bit and tended to sprain my ankles, and it would have got a lot of stitches in my side when running and swimming. I was never very sporty, but gravitate towards swimming, and later Pilates, but have never felt very comfortable doing yoga despite my flexibility, as I felt I didn’t have the necessary muscle strength to support my joints, but didn’t feel much of a stretch until my joints were going outside their safe ranges. I would also identify with probably having some issues with proprioceotion, and prefer wearing barefoot shoes partly because I know where my feet are as I can feel the ground better.
Through paleo I discovered pyroluria, and I probably would have answered yes to about 32 of the questions on the questionnaire before treatment. I was already grain free, eating nutrient dense paleo, trying to do nose to tail eating with bone broths, so I made a conscious effort to try to eat at least a dozen oysters every week, eat about half a pound of liver every week, supplement with vitamins D3 and K2 and use magnesium oil spray every day. I also really cut back on nuts and seeds, and when I do eat them now it’s almost always soaked and dehydrated. I only occasionally have some properly prepared grains. I started taking some zinc supplements, initially at 15mg a day, working up to 30mg a day, and then 45mg a day. I also played about with supplementing with p5P for a bit, but stopped it again for a while because of tingling in my peripheries and I was wondering whether I had given myself B6 toxicity. The tingling did not disappear after stopping the B6, and I’ve since discovered that the tingling gets far worse whenever I am highly stressed, and is not a side effect of B6. In fact I can tolerate extremely high levels of B6 and zinc.
Despite the primal eating, regular exercise, cutting out coffee, cutting out alcohol, mindfulness meditation and trying just about every holistic thing I could think of I still managed to completely burn out big time. At that stage I finally discovered that there was someone in Ireland who could test for pyroluria and methylation problems. I stopped all my supplements just under a week before testing, and within a few days became pretty unwell. At the point of being tested I was completely exhausted, miserable, confused, had developed an opportunistic infection and felt worse than I ever had in my life. At one point off my supplements I even developed acholic stools without jaundice, so I’m fairly sure I probably reached the point where my heme synthesis had pretty much switched off. I’d always been a bit iron deficient with low ferritin, and testing at that time again confirmed the mild iron deficiency. My urinary kryptopyrrole level came back only slightly elevated at 0.14 units (<0.08), which I'm guessing is probably the equivalent of 14. My zinc was stunningly low, even for someone with pyroluria, at 6.9 umol/L, which would be 46. This was in spite of my avoidance of most phytic acid foods and enzyme inhibitors, 12 oyster a week habit, lots of red meat and plenty of liver with some heart, and a history of previously supplementing with at least the daily recommended intake of zinc every day for over a year. I was also magnesium deficient and have overmethylation. A hair analysis has since shown somewhat high lead levels and slightly elevated nickel.
I now have a proper pyroluria protocol, overmethylation protocol, and a lot of things are improved, but I'm not completely better. My iron deficiency mysteriously vanished on the protocol, and my iron stores suddenly jumped up to normal for the first time, which is interesting as I had been concerned that all the zinc supplements might deplete my iron. Previously iron supplements had not made much of a dent in my iron deficiency.
I've noticed that I seem to need even higher amounts of zinc than I am prescribed, which makes me nervous. However, I noticed that taking 50-100mg of zinc every 2-3 hours at the start of a period massively improves my pretty horrible dysmenorrhea and menorrhagia. It's the first time in my life I can get through a period without pain relief, which is pretty incredible. But by the third or fourth day of this I notice a huge flare up in SIBO symptoms. I do try to cut down to my prescribed zinc supplementation (which is still pretty decent at 100mg a day) for the rest of the month, but my anxiety starts to creep up, and I start to notice more joint pains, my morning nausea starts to come back, sometimes I've had some metomenorrhagia mid cycle, and I start to feel more zinc deficient again. I've been wondering whether I'm producing calprotectin in my small intestine which could be binding my zinc and preventing it from being absorbed, but also keeping down the bacterial overgrowth somewhat.
I suspect the having Ehlers Danlos makes your gut inherently leaky, and that leads to inflammation which induces pyroluria, which wastes zinc, magnesium, B6, depletes vitamin C and antioxidants and probably wastes other nutrients. This then probably reduces the ability to make sufficient collagen, which increases the inflammation further, so it's a vicious cycle. The acne and frequent infections might lead to increased antibiotic use and damaged gut flora. Lots of us seem to have pretty awful periods, and I think it is common for us to be prescribed the oral contraceptive pill for period pains, heavy menstrual bleeding and acne, so contributing to the loss of zinc, magnesium and B vitamins as well as altering gut flora further. Exercise can be difficult with all the pain and dizziness, and that probably doesn't help either. From what I've been reading medications like stomach acid blockers, pain relief, and medications for anxiety and depression can alter the gut microbiome, and at least some of them can also reduce nutrient absorption. Then the insomnia that we seem to suffer from compounds things further.
So that is where I am at the moment.
As far as the pyroluria questionnaire goes, I wonder whether it would be worth considering excessive menstrual blood loss and pain. Both of those are very common with hypermobility.
I really appreciate all the work that you do, and I always tune in to the anxiety summits which are so helpful. I've learned so much from those and your book (which I've loaned to a good friend who also loves it).
Thanks,
Catriona
Hi Trudi
Thank you so much for posting this. I have a daughter on the autism spectrum who has joint hypermobility to the extent that she can’t write or type by herself and has poor gross and fine motor skills. And of course she has the social anxiety and all of the other issues that seem to be be connected to Ehlers Danlos syndrome that you have mentioned. I will be very interested in following your study. Because of the diagnosis of autism, we often overlook other issues. Incidentally, my daughter was born with a tethered cord condition and a lipomyelomeningocele that was surgically corrected at birth. So now I am wondering if she had a connective tissue disorder to begin with that could have caused the tethering of her spinal cord. It will be interesting to know if anyone else has seen this connection. I will go on the EDS Foundation page and see what I can learn.
Thank you again.
Srimita
Srimita
Thank you for sharing here. I’m still learning but do see that tethered cord is common with EDS. As more people read this blog I hope we’ll hear from others.
My colleague Julie Matthews is an autism nutrition expert and she recently shared with me that joint hypermobility is common in the autism spectrum. If you’re not familiar with her work, I encourage you to check it out. Here is a blog from an interview I did with her on one of the Anxiety Summits https://www.everywomanover29.com/blog/anxiety-summit-bioindividual-nutrition-and-special-diets/
With regards to your daughter’s social anxiety, I’d look into the pyroluria questionnaire and protocol as it’s commonly found with autism. Here are 2 blogs https://www.everywomanover29.com/blog/pyroluria-prevalence-associated-conditions/ and https://www.everywomanover29.com/blog/oxytocin-social-anxiety-pyroluria-autism/
Finally with regards to her joint hypermobility and not being able to write or type by herself and her poor gross and fine motor skills…I’m very encouraged by the work of a mom with EDS who has found a simple nutrient/product that has helped her and her daughters tremendously. I’m in the process of checking it out and will be sharing more as I learn more
Hi Trudy and all,
Healing Touch treatment and Occupational Therapy both come to mind for treatment of many of the symptoms of this condition.
There is much information about Healing Touch that can be accessed at http://www.healingtouchprogram.com In general, Healing Touch supports the client’s self-healing by addressing concerns in any of these four areas: physical, emotional, mental, and spiritual. Stagnant energy, which can be caused or exacerbated by symptoms of the condition is addressed allowing physiological changes to occur that promote healing. Pain, digestive problems, emotional stress, etc are areas that clients report they feel relief with Healing Touch treatment. Likewise, in the other areas, as stagnant energy is addressed, shifts can occur that help improve underlying and/or consequential effects of illness in the emotional, mental, and spiritual realms. No specific spiritual beliefs are promoted, all paths are honored. Clients are supported in any areas they care to address. This is a simplified explanation to give an overview.
Some ways that occupational therapy can support healing and coping with symptoms of this illness are to help alleviate pain, provide education regarding joint protection and energy conservation during daily and work activities, help people to organize their living and work spaces for the purposes above, and to promote good self care for physical and emotional health.
The American Occupational Therapy Association may be a good resource, as I am sure the national associations and many clinics in several other countries would be as well.
Thanks Trudy.
Maria Logsdon, OTR/L, HTP-A
Please note that I am not actively taking clients in either of these fields at this time. I just wanted to share this information for educational purposes, in case anyone was not yet aware of the support that this complimentary and traditional medical care can afford people who are affected by this condition.
Maria
Thanks so much for offering information about these resources. I’m familiar with Reiki but not the term Healing Touch. I do see a many studies in pubmed and look forward to learning more.
I am very familiar with the value of Occupational Therapy. Also, my sister is an OT and I see the amazing work she does.
This is all so fascinating. I was diagnosed by a rheumatologist with Fibromyalgia and hyper mobile joints more than 20 years ago. And I recall being taken to the doctor as an early teen because of leg pain which the doc said was growing pains.
I developed Reflex Sympathetic Dystrophy in both feet/ankles following bilateral foot surgeries 6 years ago, after a life time experience of foot pain/sensitivity. And an early diagnosis of osteoarthritis in my twenties.
I was diagnosed with Celiac about 13 years ago and haven’t found being gluten free to help with pain nor have my digestive issues resolved. The possibility of those being connected with the connective tissue disorder is enlightening.
My Pyroluria score is 29 (am currently in your Aminos for Anxiety class)and have been on the supplement protocol for many months. Anxiety has lessened but no decrease in any of my physical pain.
Thanks much for your explorations into this.
Hi Paula
Thanks for sharing here – so pleased to hear this is enlightening. I’m very excited to be learning about this and will be sharing more. Hopefully by addressing some of the underlying issues with connective tissue, you’ll start to see some decrease of your physical pain. I’m curious if you have you used any nutrients that help with connective tissue – such as vitamin C, zinc, MSM, aloe vera, collagen?
It seems that the hyperflexibility connection with pyroluria is getting stronger.
Trudy,
Thank you for your response. I have been taking vitamin C and zinc for many years and tried aloe briefly a few years ago. I don’t recall it helping with pain. I don’t have any experience with MSM or collagen.
Hi Trudy,
I find your articles enlightening and thought provoking, thank you for making time to write!
I am hyper mobile, but do not have any particular social anxiety. I find that eating grassfed/pastured meats, wild fish, organic highly colored vegetables, occasional berries or an apple, and natural fats (olive oil, coconut oil, butter, schmaltz, suet, and lard), green tea, and bone broth, have reduced my pain to near zero. I did the GAPS diet in 2009. I was miserable for a week as I dumped toxins. Emerged from that year feeling better than I had in ten years! I’m homozygous 1298 -/- for methylation, adding methylated Bs in modest amounts has made it easier to introduce new supplements when needed – 1/8 tabs every week, rather than “fairy dust” (as you so aptly describe it!).
To my point: about one in ten people have a sulfa drug allergy. Some of us also are made ill by sulfites. These are found in food additives to preserve color in low quality processed foods. I drive everyone nuts asking questions about vinegars, coconut products, pickled foods, wine, when I eat out. However the symptoms are miserable if I get ahold of sulfites (cough with every breath, asthma, explosive diarrhea about an hour after ingesting the sulfite containing food, and an intense headache for three days with lethargy). I bring this to your attention because MSM can put someone with a sulfite allergy on or over the hairy edge if any of these foods are ingested. I found this out the hard way. An wholistic practitioner had warned me of this possibility several years before. I thought I might be ok with the MSM after the GAPS diet – nope! Sulfite allergy is a true allergy! One never “gets over” it! MSM is too close, molecularly, to sulfites to be safely ingested by one with the sulfite allergy.
Thank you for your time!
Hi Esme
Thanks for sharing your wonderful diet and approach. I love hearing that you are almost pain free. Thanks too for sharing your experiences with MSM and sulfites, which fits with the fact that there is “no one size fits all” and we have to figure out what will work for us. I’m curious if you happen to know how common sulfite issues are in the EDS/hypermobility population?
I also discovered the hard way that I don’t do well with MSM or cheap red wine containing sulphites, both of which gave me a headache that made me want to chop my own head off! Interestingly I don’t seem to have issues with dried fruit, although I usually go for organic, unsulphited apricots, etc. I know that I am heterozygous for the CBS 699T upregulation. I am also an overmethylator. I don’t have any MTHFR mutations, but most of the rest of my methylation and detox SNPs are a bit of a mess.
Firstly, thank you for the work that you do, it is so helpful to many people. I had not heard of Pyroluria before I heard your interview with Donna Gates on the Gut summit and I thought this might be something that is relevant for me. Yes indeed! I scored 39 on the quiz! So I have been reading up about this and have just started on the EPO, zinc and I was already taking B6 because of oxalate issues. It has really only been a week but I swear I am feeling a little less tense and looking forward to being more social. Anyway I felt the need to chime in here because of this post.
Many years ago I received a diagnosis of Joint Hypermobility Syndrome and recently did more research and found that other issues I am having were associated with JHS like many, many joint issues, migraines, MVP, fibro, IC, etc. One of the symptoms as you have already mentioned for Pyroluria but also for JHS is anxiety and “overreacting to little things” and being “too sensitive”.
So with this post two of my seemingly unrelated issues collided into one related issue! I am seeing a functional medicine Dr now and being tested for many things so may have a better idea of zinc status and hopefully a test for pyroluria etc. soon. I look forward to researching this further and what it may reveal for me.
Thanks again!
Oh yea -my alkaline phosphatase is usually around 40. No Dr has ever been able to tell me why it is so low or even cared that it was.
Low alk phos could be a sign of low vitamin B6. It should be 70 and above
Laura
So pleased to hear “I am feeling a little less tense and looking forward to being more social” in a week! This is typical.
And thanks for sharing about your Hypermobility Syndrome, many joint issues, migraines, MVP, fibro, IC. This helps us all start to connect the dots!
Just a heads up, zinc is not easy to test for and urine pyroluria tests can be false negative.
Thanks for the reply! Interesting how conditions or diseases relate to one another or to some bigger thing. We need to keep talking/connecting/discovering.
If zinc is hard to test for via blood or urine, is the taste test a good way to follow progress? Besides symptomatically, that is.
Zinc taste, alk phos <70 could indicate low zinc and low zinc symptoms (poor sense of smell/taste, anxiety, stretch marks, blood sugar issues, thyroid issues etc)
Dr Usman also talks about ratios and I'm just learning about this ...."We look at plasma zinc and serum copper ratios. When you ratio plasma zinc to serum copper what you’re looking for is a ratio of 1 to 1."
https://www.everywomanover29.com/blog/zinccopper-balance-in-autismpyroluria-dr-usman/
I read that post the other day – interesting. I will see if those zinc/copper tests can be done and see what my ratio is.
I ordered the liquid zinc test from Premiere Labs and 3 of us did the test. My friend diagnosed with pyroluria by symptoms could taste nothing, my Hubby could taste something vaguely bitter but I had a very quick reaction and had to spit it out right away. Brushed my teeth and can still taste it. This surprised me since I tested so high on the quiz.
I am a supertaster. Would that affect this at all?
Thanks,
Laura
http://www.siliconvalleyfit.com/blog/bid/150663/Zinc-Tally-Test-Needs-Blood-Testing-to-Confirm-Accuracy
mentions issue of supertasters and zinc taste test
Laura
Thanks for sharing. It makes sense but it’s not something I’ve heard other practitioners mention. I’ve added it to my long list of things to research and look into.
His article mentions he uses the zinc blood test together with zinc sulfate but he doesn’t mention which test so he may not be measuring something that is a true reflection of zinc status. This is why I use the combination that I mentioned above
This is very interesting about hypermobility. I never knew it was a condition with a name. I used to be able to do most of those positions and poses although pain prevents it now.
I just started the pyroluria protocol 1week ago and am still working out the best doses for my self. I have had 1 night of unbroken sleep and with pleasant dream recall that night so I hope I’m on my way to recovery. I’m also using amino acid therapy from Julia Ross book for pain relief and energy. I could not find a reference to a good copper free muli and wondered if you might know of some that pyroluria use.
Deb
Here you go https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
Please let us know how you do
Thought you might be interested in this study and theory by an MD that was just posted. It might help with other things that you see in your practice. It makes some connections between things that most drs are resisting making the connection. I and my family fit this completely. It does scare me because no one is addressing it but hope that someone picks up the ball and starts running. I don’t know if she knows about Pyroluria but she mentions that she has been on forums before. Hope you get something useful out of this.
RCCXandIllness.com
Thank you Candy – this is extremely helpful and I will be reviewing in great detail! I would love to connect with her too – stay tuned…
Please keep me posted. There are an awful lot of us out here that need help. She is thinking that once this gets rolling some drug manufacturer will attack it as it is might affect 20% of the population. I really don’t understand the status of this but she mentions that we should be getting help ‘soonish’….whatever that means.
I love that you look outside the Pharma box to fix things and I would welcome comments from you. She is not exactly saying what she is recommending for support but there are some hints in her papers. She does have a discussion FB site. It is for theory discussion and not really for medical help. I have conversed with her on her FB site and another that has a protocol for EDS called Ehlers Danlos Syndrome and Polysaccharides.
If you talk to her, please keep me posted.
Was wondering if you have worked with anyone in overcoming a skin condition called ichthyosis.
Wondering if the skin condition might be caused by a deficiency.
Thank you for your thoughts on this.
Lori
I have not but as with any condition it seems there could be any number of underlying causes and it would be a matter of finding the root cause/s and addressing it/them.
Here is an excerpt from a paper where it was an autoimmune thyroid condition: “Acquired ichthyosis is a rare cutaneous disorder characterized by dry, rough skin with prominent scaling, that involves symmetrically the trunk and limbs and especially on the extensor surfaces. It appears most commonly in adults in association with malignant, autoimmune, metabolic, endocrine, and infectious diseases. We describe a child with acquired ichthyosis in whom an autoimmune hypothyroidism was detected; furthermore, replacement therapy with L-thyroxine resulted in complete remission of ichthyosis.” http://www.ncbi.nlm.nih.gov/pubmed/20653873 But as you can see they mention the association with malignant, autoimmune, metabolic, endocrine, and infectious diseases.
I’d be curious to see how common it it seen with Ehlers Danlos Syndrome due to underlying issues with connective tissue. I found these papers http://www.ncbi.nlm.nih.gov/pubmed/25807069 and http://www.ncbi.nlm.nih.gov/pubmed/6358130
My daughter was diagnosed with that when she was little by a dermatologist. He gave us some liquid to put on her and cover with plastic wrap for a short time. One area at a time. She had problems with it her whole life. Still has dry skin as an adult. But she also had hyperthyroidism which led to the killing of her thyroid, has gallbladder issues, and is in a family with EDS.
Thanks for sharing Candy. Do you know what liquid she was prescribed? And do you have autoimmunity in the family? if yes then I wonder if Hashimoto’s was the issue (it’s often misdiganosed as hyperthyroidism). Has the EDS protocol helped with her skin?
Hi, I am recently dianosed with POTs and my daughters with EDS 3. I do not fit the full citeria for EDS as l am 48 and less flexible, plus l have never dislocated. My doctors says l am very close. I definately have colligen issues. My husband recently had Pyrrole diagnosis and so my research brought me to your website. He interestingly has popping jammining elbows and flat feet, varricoss veins – all indicative of stretch. I did your quizz and tested higher than him. Mid 20s. I will have to look at trying suppliments. I am not ready to do the test as in Melbourne Australia testing is difficult, costly, and there is no medical professional that my husbands Gp has been able to refer him to. Thankfully l have a great compounding pharmacist who suggested pyrrole when discussing my daughters chronic fatigue. She has been able to prrvise a suppliment with zinc and b. I think her knowledge is limited though. Having said that my husband has responded immediately feeling better able to cope and calmer. Do you know any good Doctors in Mebourne? Thanks so much for your information. Janette
Janette
Some of the functional lab companies in Australia may be able to recommend a doctor in Melbourne. Are you willing to work long distance? I could recommend someone in Brisbane. If yes please send an email to support@everywomanover29.com
Very interesting comments. I had hoped to listen to your talk on EDS on the recent anxiety summit but never saw it posted. Then I found your blog on the subject and thought I’d share my ‘two cents.’ Ever since I was a kid, I had hyperflexibilty of my knees. I see it in my oldest son too. After discovering the subject of EDS, I started checking out other joints. I can sit in full lotus, touch my palms to the ground when standing and recently discovered that I can bend back my 3 middle toes almost 90 degrees. I had 23andme testing done and looked up EDS on Livewello and discovered that my genes point to some issues with it. I also have low cholesterol in myself and family. My sons run in the 70s and I’ve been as low as 56. In all fairness, my low of 56 was when I was participating in a 2 week long diet of fat restriction to 2 T of polyunsaturated fat/day for a research protocol for a study I was working on. My cholesterol started at 118 and over the 2 weeks dropped to 56. Since discovering the dangers of low cholesterol, I have been much more generous with healthy fats. Unfortunately I do not tolerate eggs more than 2/week. I was also tested negative for pyroluria via urine. However, a different functional medicine doc saw it in my symptoms and put me on P5P. Previously I had been on evening primrose oil with benefits so it was added back in. The P5P helped a lot when I increased it to 50mg 3x/day after reading your dosing recommendations. Interestingly, zinc has not been a problem. White spots on nails disappeared after stopping sugar and I do eat a fair amount of meat (especially lamb). But hearing that <70 alkaline phosphatase may point to low zinc, I may give it a try. I'm in the 40s. I do think I may need to increase the P5P because my stress level has increased as has my social anxiety. My family all are homozygous for B12 issues and MTHFR C677T (we have spina bifida, hydrocephalus and tetrology of fallot in family). Thank goodness I connected with a functional medicine diet so I could address all these issues. Thank you for all the information you share. We are all collectively helping each other to better health.
Kathleen
Thanks for sharing – glad you have a good diet. I’d really watch that low cholesterol
BTW, my EDS discussion happens in the closing call of the summit which is still available on the replay page
Hello Trudy
I am DX’d with EDS Hypermobility type. I scored 17 on your questionaiire but did not know the answers to some of the questions. I am going to try the supplements and see what happens.
Please keep us posted on how you do Sharon
Hello Trudy…
My 2 daughters and myself have HYPERMOBILITY EDS, POTS, MCAD, autoimmune disease (Lupus, Raynaud’s, Grave’s, Addison’s), corneal dystrophy, mitochondrial complex 1 deficiency, etc.
We tested for Pyroluria and both daughters have elevated levels but my youngest daughter had a level of 113. She has supplemented with zinc and arachidonic acid.
We actually made a blest discovery, that I think might be helpful to others! We have seen many different gastroenterologists over the past 20 years. We were told we had gastroparesis with subsequent reflux, etc. We thought it was an autonomic nerve dysfunction. My youngest daughter had it so bad she threw up every morning, every bedtime and many times throughout the day, for years. The food she ate would come back up undigested. She has stunted growth and weighs 86 pounds at the age of 20. She was told she has eosinophilic gastroenteritis as well. She was being treated by an abdominal pain specialty clinic in a local hospital for many years. We did the eosinophilc disorder protocol of antihistamines, leukotrienes, zofran for vomiting, and antacids. In spite of this treatment, she continued to have vomiting, nausea, and pain.
We then found information about the supplement Betaine HCL, which we decided to try. Apparently, low or lack of stomach acid can mimic gastroparesis and the fermenting food causes burping. There is a wonderful article that explains how low or lack of stomach acid doesn’t allow the esophagus/stomach sphincter to close because the stomach ph must reach a certain level before it will close. Then the opening to the intestines doesn’t open for the same reason. When the stomach gets so full it actually forces the undigested food into the intestines which cause large undigested food to enter the intestines promoting leaky gut. These too large particles get into the bloodstream and cause immune related diseases. This whole process also doesn’t allow the amino acids in food to be absorbed, causing deficiencies across the board. THIS IS A MIRACLE COME TRUE for her!!! She can now go all day without stomach pain or vomiting! She is now off all of her prescription medications except for the occasional Zofran. She does supplement with zinc, since zinc is a precursor to stomach acid. This discovery has changed our lives.
Additionally, she has had trouble with reactive hypoglycemia, and we have underlying mitochondrial complex 1 deficiency so we takes a self-made corn starch capsule before bed and at 7:00 am to give her a slow release glucose. This slow release sugar keeps her blood sugar from dipping too low overnight and breaks the low sugar, high sugar compensation cycle!
I just wanted to share some things that have worked miracles for us! Best wishes on your move!
Ginger
Ginger
Thank you for sharing this very interesting info! Do you perhaps have a link to the article? I do hope she’s doing better now!
I’d like to suggest looking into alternating the self-made corn starch capsule since corn is a common allergen. And making sure it’s GMO free. Have you considered glutamine and /or a protein snack before bed?
Dear Trudy…
Thank you so much for your response. Below are several articles that I have read regarding the low stomach acid Betaine HCL treatment. My daughter has been using the HCL treatment for 6 months, and she is still virtually stomach pain, vomiting, and nausea free. The results happened within half hour of her first dose. We used to carry a trash basket around behind her, and took vomiting bags with us when we went places as the vomiting controlled her life for 10+ years and this is all while being treated by a Stomach Pain Specialty Clinic at our local Childrens Hospital. Prior to that time she had milder but still bad stomach issues her entire life.
Several things we have learned about the use of Betaine HCL include:
1. it cannot be taken while using an antacid or proton pump inhibitor
2. it shouldn’t be used by someone taking steroids (I have been on prednisone for 20 years for Lupus/Addison’s so this rules me out because steroids are said to weaken the stomach tissue. They offer the alternative of Swedish Bitters and that does help me but my condition is MUCH milder than my daughter.)
3. if a person has the Alpha-1 Anti-Trypsin ZZ phenotype, which is not that uncommon (my youngest daughter has it) so she is unable to use the Betaine HCL with PEPSIN because her lungs and liver cannot tolerate TRYPSIN of which PEPSIN is one form. We order a PEPSIN free version online. The Betaine HCL I have seen in the local health food stores all contain PEPSIN. There is a free A1AT DNA test that can be ordered online if a person wants to know if they can use PEPSIN or any other digestive enzyme products. If they don’t want to do the testing, they can just order it online without the PEPSIN, to be safe.
Thanks for always being so generous with your time and knowledge! I’d love to hear your thoughts about these articles.
Also, a side note, I want to share that my daughters and myself and several other members of our family have a gene mutation. It is an unknown variant but it is known to be damaging and disease causing. We were working with researchers from Israel, but our gene researcher just finished up his time with the lab and the project on our gene mutation has ended with his departure. We are looking at contacting other researchers. We do have a few answers and details about it though, and I am hopeful that someday it might give other people answers, as well as my family. It is called the NipSnap3a gene.
In Gratitude…Ginger
https://www.naturalgrocers.com/nutrition-and-health/nutrition-library/nutrition-article/acid-for-digestion-2/
http://drjockers.com/10-ways-to-improve-stomach-acid-levels/
http://drjockers.com/causes-and-symptoms-of-low-stomach-acid/
http://drjockers.com/5-ways-to-test-your-stomach-acid-levels/
I’d like to follow this post.
Dear Trudy…
Thank you so much for your response. Below are several articles that I have read regarding the low stomach acid Betaine HCL treatment. My daughter has been using the HCL treatment for 6 months, and she is still virtually stomach pain, vomiting, and nausea free. The results happened within half hour of her first dose. We used to carry a trash basket around behind her, and took vomiting bags with us when we went places as the vomiting controlled her life for 10+ years and this is all while being treated by a Stomach Pain Specialty Clinic at our local Childrens Hospital. Prior to that time she had milder but still bad stomach issues her entire life.
Several things we have learned about the use of Betaine HCL include:
1. it cannot be taken while using an antacid or proton pump inhibitor
2. it shouldn’t be used by someone taking steroids (I have been on prednisone for 20 years for Lupus/Addison’s so this rules me out because steroids are said to weaken the stomach tissue. They offer the alternative of Swedish Bitters and that does help me but my condition is MUCH milder than my daughter.)
3. if a person has the Alpha-1 Anti-Trypsin ZZ phenotype, which is not that uncommon (my youngest daughter has it) so she is unable to use the Betaine HCL with PEPSIN because her lungs and liver cannot tolerate TRYPSIN of which PEPSIN is one form. We order a PEPSIN free version online. The Betaine HCL I have seen in the local health food stores all contain PEPSIN. There is a free A1AT DNA test that can be ordered online if a person wants to know if they can use PEPSIN or any other digestive enzyme products. If they don’t want to do the testing, they can just order it online without the PEPSIN, to be safe.
Thanks for always being so generous with your time and knowledge! I’d love to hear your thoughts about these articles.
Also, a side note, I want to share that my daughters and myself and several other members of our family have a gene mutation. It is an unknown variant but it is known to be damaging and disease causing. We were working with researchers from Israel, but our gene researcher just finished up his time with the lab and the project on our gene mutation has ended with his departure. We are looking at contacting other researchers. We do have a few answers and details about it though, and I am hopeful that someday it might give other people answers, as well as my family. It is called the NipSnap3a gene.
In Gratitude…Ginger
https://www.naturalgrocers.com/nutrition-and-health/nutrition-library/nutrition-article/acid-for-digestion-2/
http://drjockers.com/10-ways-to-improve-stomach-acid-levels/
http://drjockers.com/causes-and-symptoms-of-low-stomach-acid/
http://drjockers.com/5-ways-to-test-your-stomach-acid-levels/
Hi Trudy…So happy to have come across this post. My daughter, now 17 was diagnosed w EDS, Dysautonomia at 13 after a total “crash”…excruciating pain, subluxations, poor sleep, etc. She could answer yes to nearly all questions on your questionnaire. After 4 years of specialist, she is in a very good place…going to school for 5 classes per day and planning on college next fall. She has come so far, but there is always room for further improvement. One thing that has helped her tremendously is a supplement (not sure if I can say brand name) that contains Iron (ironized ferrous aspartate) 25 mg, Vit C 100 mg, folinate 400 mcg, Niacin 20 mg, B6 5 mg, B12 100 mcg, Magnesium 5 mg, vegetable fiber 269 mg, and copper (ionized cuprous aspartate) 1.5 mg. After reading your post, I am now concerned about the copper. I hate to give up the current supplement, but wonder if the copper could be hurting her. My plan is to simply add Zinc 30 mg, a little more B6 and Evening Primrose. Can you help me understand why copper free supplements are recommended. Thanks so much.
Everyone says not to use copper because it competes with zinc but if the person is suffering like my daughter, you should check copper levels as well! She is low in copper so when we implement the pyrrole regime, we will add the daily dose of copper. Connective tissue needs copper as well as zinc. I may have her take mitosynergy as a copper supplement. She appears to have EDS, and is anemic and dehydrated. She’s tested as high histamine. Tested 36+ for pyrroles. Needs a cane to walk most of the time at 16. Once i consult with a professional in this area and have my daughter fully tested, were going to do a full supplement program and i will post with results if I remember this site.
I have extreme hypermobility…always have. Been a ballerina since age 5 in 1980, even taught a few years. The girls used to call me “Pretzel Lady.” I asked my doc last month about EDS, and showed her this and the Pyroluria survey, as I have had extreme anxiety. She said EDS is inherited, and she didn’t think I had it. She actually tested my B6 & Zn, but they came back normal. I also just had a right adrenal gland and a tumor removed 9/30/16 that was benign & bio-active, causing my Cushing’s Syndrome for at least 9 years, in retrospect, due to my first symptom. I also have a history of hyperparathyroidism with partial right upper and full lower parathyroidectomy (3/05), due to benign adenomas. I deal with fibromyalgia pain and anxiety on a daily basis, which has been knocked down a bit since the adrenalectomy. Anything else you can suggest here to pass along to my doc? (I’m also vegan and a veggie and fruit-aholic.)I found out in 2012, after being a vegetarian since 1988, and going vegan, that I was allergic to dairy. My skin and GI issues cleared up greatly. If I get dairy in my system, I get really sick.
Billie-Dawn
Sorry to hear this – I would find a doctor how can support your in your search for a EDS diagnosis. It will be harder to find a doc who knows about pyroluria. Keep in mind that serum zinc and B6 is not accurate. I use symptoms and a trial of the nutrients to address pyroluria in my clients.
For the pain and anxiety if we were working together I’d consider serotonin (https://www.everywomanover29.com/blog/fibromyalgia-tryptophan-5-htp-for-anxiety-depression-pain-and-insomnia/) and GABA support for quick relief and do check out Dr David Brady’s new book “The Fibro Fix” (http://amzn.to/2gEllMs) and Fibromyalgia summit.
I would not add back a food that causes issues but would look at gluten, caffeine and sugar and encourage you to consider adding back animal protein, starting with eggs. Lierre Keith talked about the health issues she suffered on a vegan diet in a prior summit https://www.everywomanover29.com/blog/anxiety-anxiety-depression-vegetarian-diet/. I find so many women do so much better when they add back grass-fed red meat. I know it’s tough because I was there too.
There is an EDS protocol which I’ll be sharing – I’m working on a guest post from a mom who has used it to help herself and her daughters.
Trudy, first learned about EDS from one of your blogs. I’d love to know about any protocols to help with the joint pain, knee swelling etc. Gluten free and grain free hasn’t made any difference at all unfortunately. Thanks for all you do.
Bonnie
I don’t yet and am working on getting one written up from Deborah Cusack from the facebook group “Ehlers Danlos Syndrome and the Cusack Protocol” https://www.facebook.com/groups/edsandaloe/ In the meantime this is a great resource and very supportive community. She has had incredible results with her family and herself
hi everybody! I would like to know if b6 b9 vit deficiency is always associated with anaemia?
I know this article was posted a long time ago but I just read it because I’ve started doing research into possible conditions since I’m not getting answers from my doctor. JHS came up and it sounds like a possibility. I’ve always been told I’m very flexible and I have a few joints that I know fit into the hypermobile category but many of them don’t. However, I am always getting easily injured. I’m only 23 and the only uninjured joints in my body are my fingers and hips. I started injuring joints through sprains, strains, and dislocations as a kid but we didn’t think too much of it and gradually over the years it became more frequent and now I have 9 joints including my back that are painful and needing physical therapy. Does this sound like what anyone else has gone through with this syndrome and if so, what kind of a doctor do you see for the best care/treatment options. Thanks for reading, I really appreciate any help/advice you guys can offer.
So sorry that you have suffered with so many injuries. Finding a doctor for unusual health issues is challenging for all of us. I have found when dealing with conventional doctors that taking physical documentation of the issue to the office visit helps them. No one can be expected to know everything including our doctors. A functional medicine doctor may be a good choice as they are open to these unusual conditions. They promote an individualized healthy diet & life style which is the foundation for good health. Please look into bone broth. It’s awesome for so many things.
Here’s some talks on EDS that may be helpful. https://www.youtube.com/watch?v=ktFdr-9rpIM&list=PLdNhRn-nXX249AJDFjclMWB_EVALAi-5v
If you are open to genetic testing, 23&Me, Ancestry.com, Gene by Gene & Family Tree DNA can provide a list of gene raw data which can be uploaded into an interpretation program that will tell you where your strengths and weaknesses exist. You can take this data to your doctor.
My functional medicine doctor had me upload the data to Livewello. At that site (there are many others too), you can go to the gene library and enter all sorts of search requests such as histamine, chronic fatigue, KIT, etc. Interested members of Livewello have assembled the genes that would provide a list of relevant genes that you may have. From there you can print out your particular genes. I would caution you, it is very confusing and can gobble up time trying to figure things out. There are practitioners that work directly with patients to help interpret their genes. A big note of caution – genes do not determine outcome. They are predictors. If you eat well (best organic, non-GMO and for your blood type), avoid and detox toxins and lead a healthy life, your genes will function better. They get turned on by heavy metals, toxins, stress, pathogens, vaccines, etc. Finally, I would recommend that you work on any emotional issues, develop a strong relationship with our Creator and carry love, gratitude and forgiveness in your heart.
Someone may have already posted this but it bears repeating: there is a psychiatrist, Sharon Meglitiary and an endocrinologist( name I cannot remember) who are working to get funding to research the connection between EDS and certain psychiatric illnessess/dysfunction/predisposition. I am not doing her theory justice but it has been facinating to me to listen,read and ponder her thoughts as she sees connections between family members who may haveEDS or just be related to someone with EDS. Dr. Sharon has EDS herself and like all good researchers, has essentially been her own lab rat 🙂
My knowledge of genes and gene expression are so very limited but she thinks the prolem is linked to the CYP???? (Ugh sorry I will go look up the link) she has a FB page with links to her theory. Informally, as a nurse and a patient looking for my own answers, so much of what she says and stories/comments on her page ring true. She says in families, there might be someone with EDS, another with Chronic fatigue, another with POTS of Lyme another with schizophrenia….. So interesting!! She thinks there is a gene that doesnt allow us to process stress properly. Sharon Meglitbiary.
Ann
Thanks so much for taking the time to share this – it’s all new to me and fascinating (based on a very quick read) and I will be taking a deeper look at her work. For now I’ve found the site and facebook page and am posting here for other blog readers. By the way it’s Sharon Meglathery MD and Karen Herbst MD PhD, and the CYP21A2 gene.
Meglathery MD’s Theory: “RCCX Module: CYP21A2 Heterozygosity Predisposes to Chronic Illness: Medical and Psychiatric,TNXB adds hypermobility”
The facebook page: https://www.facebook.com/rccxandchronicillness/
The main site http://www.rccxandillness.com/
Dr Sharon’s site http://www.sharonmeglatherymd.com/ (which appears to be her main practice site with little reference to EDS)
I look forward to seeing if there are any connections with her work and pyroluria. As you may know pyroluria symptoms are made worse with added stress.
Stumbled upon your site today and did the questionaire on Pyroluria which I’d never heard of. I score very high. I also have joint hypermobility and potentially EDS. I was diagnosed last year with Fibromyalgia (chronic pain) and have a lot of digestive issues and food sensitivities. Pyroluria really explains a lot about how stressful I have found life and I will happily try B6. I had worked out that I was low in zinc and magnesium since birth probably. So I already take those. I’m interested to see what difference the B6 and oil of evening primrose make. I’ve had bouts of anxiety and depression my whole life. Thanks for the info!
Shasha
Glad to hear this has been helpful. I’d love to hear how the pyroluria protocol helps. Keep in mind that pain and digestive issues are also common with low serotonin so I also always assess for that https://www.everywomanover29.com/blog/fibromyalgia-tryptophan-5-htp-for-anxiety-depression-pain-and-insomnia/
Hi Trudy
Sorry if this has already been posted in the comments section, but this person has linked her family’s EDS to MTHFR and nutrition, and has written about it here:
http://www.mthfrheds.com/
There is also this paper published in 2004 which proposed a novel nutritional-based protocol for EDS
http://www.eds-nyc.com/wp-content/uploads/2013/06/EDSnutritionalSupplements.pdf
I have an appointment in a month’s time to be assessed for EDS, and have already been diagnosed with hypermobility. I have all the classic symptoms related to hypermobility spectrum disorder, including the associated symptoms of autonomic dysfunction, nonrestorative sleep and insomnia, anxiety and depression. I also scored highly on your pyroluria test.
After being sick for many years, I am slowly beginning to piece together what might be going on. For 7 years I have experienced many medically unexplained symptoms, which I believe are neurolo-cognitive in nature. They include general cognitive dysfunction, and symptoms of poor neurotransmitter activity, memory problem (short-term and long-term), an inability to concentrate or self-motivate, extreme procrastination and easily distracted, mental fatigue and lack of mental stamina, inability to handle stress, agitation, overwhelming sense of fear and panic which comes in waves, inability to look people in the eyes, inability to connect with / feel for others, difficulties following speech and conversations / narratives, neuromuscular weakness / tremor / pain, and problems with my vision and hearing, tinnitus, erectile dysfunction, stress incontinence and IBS, heart palpitations and difficulties breathing, asthma-like symptoms, upper airwaves resistance when sleeping, insomnia, exercise intolerance, and poor circulation.
I think my poor health is partly related to trauma, chronic stress, poor diet as a child, substance misuse and addiction, and most recently I contracted HIV. It was challenging growing up queer in a rural town and felt a great amount of shame and fear related to my sexuality in my early adolescent years. I also experienced a traumatic incident when I was 17 related to my sexuality, which involved false accusations, false arrest, harassment, public humiliation, betrayal, and physical and verbal attack. I have subsequently developed a crippling sense of guilt, shame, and low self-esteem. I struggle with feelings of anger and rage, and other destructive emotions such as resentment and bitterness.
I have been diagnosed with psychosomatic illness, and I believe I also have PTSD. Every doctor I have ever seen has attributed my symptoms to psychogenic causes, including several neurologists.
I also had slight developmental delays and behavioural problems as a child, and was raised on a poor diet. I’ve been referred to a adult ADD clinic, and it’s been suggested that dyspraxia might also be an issue.
I recently started seeing a functional medicine practitioner who has ran several tests.
I have several mutations related to methylation including, MTHFR. I also have mutations related to SOD and glutathione activity. My recent GI test shows I have gut inflammation and dysbiosis, as well as pancreatic enzyme and bile insufficiency.
I am working with him on this, focusing on gut health and methylation. I am keen to try some amino acids for neurotransmitter support, but I recently reacted very badly to several methyl donors, so I have to tread carefully. I had previously been taking several supplements including a B-complex, which in the past seemed to help, but this positive effect appears to have lessened over time.
My GP and neurologist is keen for me to start antidepressant / anti-anxiety medication, but so far I have refused.
My recent HIV infection has exasperated all of my symptoms, and I am certain this is connected to my gut, and methylation. I believe poor childhood diet, trauma and stress, substance misuse, and now HIV, have been major epigenetic factors for me.
I hope you don’t mind me sharing my story, and thank you so much for all your hard work piecing things together and sharing all of your knowledge.
Tom
Hi Tom
Thanks for the additional EDS resources – it’s interesting to see the nutrients in the protocol: calcium, carnitine, coenzyme Q10, glucosamine, magnesium, methyl sulphonyl methane, pycnogenol, silica, vitamin C, and vitamin K. And yes zinc and vitamin B6 are not included. As with other conditions it’s multi-faceted, as indicated by the MTHFR polymorphism connection too.
Thank you for sharing your story. I am sorry to hear all that you are dealing with but glad to hear you’re putting the puzzle pieces together. Trauma, poor diet and EDS could be the root causes and addressing gut health and boosting your immune system is key. I caution my clients about too much methylfolate and other methyl donors – even if someone has the polymorphism it may not be causing issues/expressing. I discuss this with Dr. Ben Lynch in this Anxiety Summit interview https://www.everywomanover29.com/blog/anxiety-summit-methylfolate-anxiety/
The amino acids and pyroluria protocols can do wonders for depression, anxiety, panic, insomnia right away while working on all the root causes which take longer to address. And as you’ve read here the pyroluria protocol seems to help many with EDS too. Do also check out Deborah Cusack’s program.
Hi Trudy,
Thank you for your reply. I’ll be sure to take a look at Deborah Cusack’s program. I responded badly when I started taking methyl donors two weeks ago so I am pursuing some functional testing to actually see what’s going on. It could have been the folate. I am also keen to try the amino acid program as I have been following your work for a while now, and have got Julia Ross’s book on my bookshelf, although I am yet to read in full.
Best wishes, Tom.
Hi Trudy,
This is such a great article, thanks for writing it and helping us to connect the dots.
I have diagnosed pyroluria, diagnosed ADHD, diagnosed EDS Type 3, and diagnosed anxiety – and for the first time it seems there may be a connection!
My ferritin is also low (13) and I’m booked in for my first iron transfusion next week. I also have low blood pressure like many of the people here. I’m a 41 year old female by the way.
I too notice a definite link between joint hypermobility and ADHD and anxiety, and I would go as far to say that everyone I know with ADHD, young and old, also have significant joint hypermobility.
I also get horrible joint pains / inflammation after my period on around day 4 of my cycle, which lasts for 3 days and see me pretty much working from bed for that time. I’m lucky I can do this as I work from home.
When this happens the pains are all around my left side of my neck, left shoulder, left arm, and left joints in my wrist. I have seen rhemuatologists, neurologists, cardiologists, physios and haematologists for this – resulting in CT scans, ECGs, ultrasounds, MRIs, you name it – yet no diagnosis can be made (apart from ‘palindromic rhematism’ by the rhematologist).
I also used to get awful migraines for years at this time of my cycle, but these seem to have stopped since I gave up drinking alchohol over a year ago.
These cyclical joint pains also occur around ovulation for three days in a row, and before my period for 1 – 2 days. My periods are always very light (2 to 3 days max).
So, pretty much 8 days of every menstrual cycle results in debilitating joint pain and I’ve had this for 20 years or more with no real insights. I do wear a shoulder brace during these ‘flare ups’ which does help to ease the pain, and anti-inflammatories can help a little if I catch the pain right as it starts.
What supplements would you suggest may be useful? I take magnesium and B6 right now, but it seems zinc may also help from what I have read here? I’m happy to provide any more info to you, if it helps with your research, since I seem to have a lot of the clinical manifestations you are/were looking into!
Thanks so much for giving me a steer.
Much appreciated,
S
Sandra
The pyroluria protocol includes zinc and this often helps with joint pain, symptoms that change with your cycle and anxiety. I encourage you to read the pyroluria chapter in my book “The Antianxiety Food Solution” to get a good understanding of pyroluria https://www.everywomanover29.com/store/aafsbook.html
Thanks Trudy, I will look into this.
Thank you
I score highly on the pyroluria questionnaire and have been using supplements to treat pyroluria for several years with great success (initially saved my life when low immunity to infections left me with pernicious anemia symptoms, later massively improved by quality of life in terms of immunity, resolving fatigue problems and abnormal hunger, improving mood, and giving me a will to live when I’d never really had that).
I also have overly loose ligaments around by knees, ankles and shoulders, and my wrists often hurt when other people’s wouldn’t, if I need to do tasks that require much strength from my hands.
It’s worth noting that a person can end up appearing very stiff although they have hypermobile joints, because muscles need to work much harder than normal in order to stabilise the joints and may therefore shorten or develop permanent spasms.
I recently”happened “upon this blog. For the last 4 years, I have been racing from Dr to Dr. with my daughter trying to figure out what was going on. Very long story short, she and also my son have been diagnosed with EDS and POTS along with other issues. As having a more functional medicine type mindset, I feel like I hit the jackpot on this info! I knew there was something more! I am in my early 50’s and can look back and see answers to those “strange” episodes or unexplained health issues. I never had heard of pyroluria until now. I scored quite high on the questionnaire and I am pretty certain all three of my children would as well. EDS and POTS are quite difficult to manage at times. I am so grateful to learn about another simple way to be in more control. I have already purchased some B6 and zinc for my son and I to take and am expecting your “The Antianxiety Food Solution” in the mail. I will be looking further into this protocol. This has given me a bit more hope . Thank you!
Holly
I love hope! Please do come back and share how you’re all doing and be sure to read other comments on this blog for other EDS resources
Please let me know if you’ve ever heard of chronic low ACTH levels with all of these other disorders and if I should insist on.A stimulation test. Im worried that she could have an adrenal crisis. My daughter is 16 and may have EDS. She has POTS. Terrible fatigue.. tested 36 on urine pyrrole test. Under weight. Tested high histamine and has no appetite with constipation and slow motility. She Is dehydrated and usually anemic. Arachnodactyly. She’s in pain and needs a cane. Has darkness along her spine. I think the low ACTH levels may be causing a lot of the symptoms but an endo pushed us out the door because her cortisol appears normal but if one feels very stressed getting up early and tested, cortisol will rise! Any suggestions would be appreciated.
Bobbie
I am sorry to hear about your daughter and I have not heard of this connection. I do encourage you to tune into the MCAS/Mast Cell Activation Sydnrome summit. The encore is this weekend and you may find some answers there – register here https://mastcellactivation.byhealthmeans.com/?idev_id=739
More on MCAS and pyroluria (which is common with EDS) – https://www.everywomanover29.com/blog/the-importance-of-addressing-pyroluria-with-chronic-lyme-disease-and-co-infections-mcas-mast-cell-activation-syndrome-and-other-chronic-illnesses/
My score is 23 only on the most common symptoms, 31 total. I have ehlers danlos diagnosis
Isabella
Thanks for sharing. Do keep us posted if you find success with the pyroluria protocol – for social anxiety and any of your EDS symptoms.
There are many articles on the blog on both topics – simply use the search feature.
My book “The Antianxiety Food Solution” also has an entire chapter on pyroluria https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
Dear Trudy,
I am Dutch, 52, menopausal and have hypermobile Ehlers Danlos syndrome (hEDS), MCAS and dysautonomia.
I am an optometrist and live in Switzerland. We do not have functional medicine docters or lab possibilities where I live and I have had one too many bad experience with conventional medicine, so I decided to take matters in my own hand and try for myself. I would like to thank you, your book is my handbook!
I followed your advice and like to give you feedback on my experiences so far.
I found your website last september after a big crisis which I will describe below. Since then I have been puzzling and researching to find my root cause(s).
short version:
Most of the time I am doing pretty well, I walk 3 km, 90 hm twice a day and am mostly pain free. I am a severe insomniac.
Last year I was in the ER 3 times, first because of an allergic reaction to a wasp bite, soon after that another two wasp bites and then dysautonomia and high anxiety, the last probable caused by the high dose of cortisol I got for the wasp bite.
I had extreme high blood pressure and they thought I had a heart attack. They treated it with bloodvessel relaxants/ vasodilatators, which made my heart even need to work harder, because of my elastic bloodvessels. It was an extreme stress reaction. Everything was checked, no heart attack, but of course, also nothing to help me. I tried bèta blockers (metoprolol) for the stress, but got nightmares from it, this worsened my anxiety.
I then did online research and tried to find a bloodvessel stabilizer. I started taking Daflon; bioflavenoids. This got rid of my bruises. I also started taking valerian and this reduced my anxiety, I even do not bite nails anymore.
I then did the Mast Cell Activation Summit and found you, and bought your book.
I first tried GABA, along with zink and this greatly relaxed my blatter muscle and made me relax a bit more. later I added magnesium.
I kept a diary, like you advised.
I also had extreme problems with the heat over summer, dysautonomia, and this is one of the items on the serotonine list. I had extreme ruminating thoughts. In my family, there are also psychiatric disorders and personality disorders, which could very well be due to low serotonine.
I do walk a lot, which also should produce serotonine, but apparantly it is not enough. I started taking tryptophan, but this did not work and made my rosacae worse. Stress pushes tryptophan to the kynurenine pathway. (producing niacin; https://www.rosacea.org/rosacea-review/2010/winter/new-study-identifies-cause-of-flushing )
Also tryptophan apparantly does not goes in the serotonine pathway without the 5-MTHF, which is one of the factors in hEDS; I read the recent article about the hEDS MTHFR. https://fasciainstitute.org/folate-deficient-hypermobility-syndrome/
I switched to 5-HTP and started taking vitamin B6, (because of the nightmares) which is neccesary as co-factor for the serotonine pathway. First my digestion got much better. (Instead of having it all once in 3-4 days, it now is regular every day.) I had somewhat less ruminating thoughts.
After that I also (accidentaly) found out, that I do not process vitamine B6 very well, or not enough and now I take P5P. (since on week)
I started supplementing with 5-MTHF 2 months ago, it did not make much difference, but then I found out this also needs the P5P as a co-factor.
With the P5P things are getting much better I sleep much better, have a better mood, can tolerate heat better ( I is now 25 celsius in Switzerland and I can still walk up the mountain) My bloodpressure is back to normal/green range.
I also found out P5P is a cofactor in the GABA pathway:
So everything which should be inhibitory to anxiety did not work.
My sleep is improving, i have been a severe insomniac all of my live. (melatonin production also needs 5-MTHF). My dysautonomia is getting better, dreams are getting pleasant, I am less clumsy. My bloodpressure is in the green area now.
I now want to see how I get through the summer.
Off course, these co-factors also support other mechanisms and mine went into the adrenaline and kynurenine pathway much too often. I also did the super trauma summit and sleep summit of consious live.
I think that, because of our extremely flexible bloodvessels, we need a lot of serotonine and therefore also a lot of these co-factors i.e. high dosage. Collagen reduces serotonine, thus serotonine may also be low due to this, because with every injury, we produce collagen.
Vitamine D shifts serotonine to the brain and the Omega 3 oils are also a factor in this process: article and pictures https://faseb.onlinelibrary.wiley.com/doi/epdf/10.1096/fj.14-268342
I think my root causes are the MTHFR gene and not being able to produce (enough) P5P. I am stress free now. Things only started working after taking 5-HTP, 5-MTHF and P5P together. I build everything up during 4-6 weeks and check the P5P with the dreams and dream recall.
I am 1.70m in hight, and 91 kg. I now take:
– 200-400 mg P5P per day, tablet 50 mg
– 10-15 mg 5-MTHF per day tablet 5 mg
– 200-4005-HTP per day, tablet 200 mg
– 500 mg valerian at bedtime
along with other supplements. (I still drink alcohol)
Along with this I found out I can greatly reduce my rosacae (need to avoid niacin) and histamin by taking olive oil with vitamin C and D. I take a table spoon in the morning and one in the evening if I do not eat greek salad.
https://www.factvsfitness.com/blogs/news/dao-deficiency-increase-dao-enzyme I eat red onions for quercetin.
I am not over the bridge yet, but I now have trust that I can get better! Now it will need time.
I want to thank you for showing me the way! You may use this, or parts of this on your blog or facebook or website.
Mrs. Nicolien Janssen-Otto, B.optom
Duggingen, Switzerland
Nicolien
Thank you for sharing your journey here and well done for figuring out what you needed to do for your own unique biochemistry! MCAS does complicate things and so does EDS and dysautonomia.
You will get better and you are most welcome
I finally found out, why I kept needing so much B6/P5P, this was due to a molybdenum cofactor deficiency, probably, because I made not enough SAM. I took high dose SAM, 5-MTHF, thiamine and Molybdenum for 2 weeks and this solved the problem:-) I found the clue in this guide: http://nutripath.com.au/wp-content/uploads/2016/09/NPATH-METHYLATION-MTHFR-Manual-v3.3.pdf
I need much less P5P now.
I have been trying to put the pieces of the puzzle for my health issues together for years now and just yesterday learned that joint hyper mobility is likely one of the puzzle pieces. I have been “double jointed” since I was very young, never made any connection to any of my other symptoms. My anxiety level had been escalating for the last several years until last year I crashed with panic attacks and extreme weight loss. I also have dealt with depression, have POTS, MTHFR, and am an introvert which had also been getting worse. So now I’m very interested in learning more about how to address the hyper mobility.
Debbi
As mentioned in this blog we use the pyroluria protocol to help EDS symptoms (some of them) and anxiety. And also introversion https://www.everywomanover29.com/blog/anxious-introvert-because-of-low-zinc-and-vitamin-b6/
With anxiety and panic attacks the amino acids GABA and tryptophan offer quick relief – one of many GABA blogs https://www.everywomanover29.com/blog/gaba-calm-instead-of-xanax-for-panic-attacks-heightened-stress-and-anxiety-questions-and-my-feedback/
My book The Antianxiety Food Solution is a great place to start https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/