COURTNEY SNYDER MD - HOLISTIC PSYCHIATRIST
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Hypermobility, RCCX Theory and One Journey From Illness Towards Wholeness

6/30/2017

38 Comments

 
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by Courtney Snyder, MD

The human body is a mystery.  As much and as fast as we’re learning, we still know very little.  This post is about a recent discovery.  I call it a “discovery,” because I’ve lived out what this theory holds to be true, as have a number of patients I work with, and perhaps some of you reading this.  RCCX theory is quite complex.  The best I can do is share my personal experience with the hope that doing so will help make this information more accessible.

We all have traits that make us different - whether it’s our appearance, how we react to our world or the natural abilities we possess.  Some traits, we may take pride in, others not so much.  Ask me why I’m flexible and I’ll tell you I did gymnastics when I was young.  Why do I have low blood pressure? I exercise regularly.  My flat feet?  Just one of those genetic things.

​As a child I worried...a lot.  In my second year of college, I could have been diagnosed with depression.  I’m the kind of person who can’t watch Cirque du Soleil without turning away for fear I’ll witness someone plunge to their death.
 

Never had I imagined each of these traits could be related, or that they would foreshadow a ten year health struggle that I’m only recently coming out of.
I was 37 when my health problems began. Recurrent “urinary tract infections” came first - then recurrent sinus infections and with these recurrent antibiotics.  Infertility led to a diagnosis of ovarian cysts and endometriosis. The cesarean section birth of our daughter was quickly followed by a reaction to a pain medication, then a reaction to the medication for the reaction to the pain medication before a raging cellulitis/skin infection on my abdomen. There was the mild chest pain and tingling sensation in my left arm that led to an extensive cardiac workup. Next, came subtle difficulties using my fingers and hands.  More dramatic neurological symptoms came after 2 courses of antibiotics - leg weakness, changes in vision, severe headaches, nausea related to the position of my head, which at times required effort to hold up, and episodes of heightened anxiety and racing heart. Later, it was swelling in my legs and “air hunger” - the feeling that you can’t get a deep enough breath. Sprinkled throughout was intermittent brain fog, which for me meant difficulty finding words, problems with driving directions, problems retaining what I’d read or heard and at times forgetting what exactly what it was I was doing. Often present - a blanket of fatigue  - an invisible resistance that made even drying my hair a challenge.  Much of this couldn’t be validated with typical labs and imaging.  To all but my husband and daughter, I didn’t appear “sick.” Respite came in the form of long (at times 3 hour) naps that would have been blissful but for my pounding and irregular heart beat.  

Trying to understand complex chronic health issues for myself and my daughter during ten years away from psychiatry and medicine, led me to functional and holistic medicine.  Everything I learned helped us and helped me help others when I did return to practice. Unfortunately and fortunately, there was always more to be unraveled.  The gastrointestinal candida/yeast overgrowth led me to the micro-biome which led me to nutrient imbalances (elevated copper, low zinc, methyl/folate imbalance, pyrrole disorder, etc.), which led me to bio-toxicity (in my case, mold toxicity), which led me to mast cell activation….which led me to things I had that I didn’t even know there was a name for.  Each step moved me closer to health, but none could explain why instead of just one or two or even three of these, I had them all.  This was also true for a handful of patients coming to my office for help.

Occam's razor is a problem-solving principle attributed to William of Ockaham (c. 1287–1347), an English Franciscan friar, philosopher, and theologian. His principle basically says - “Among competing hypotheses, the one with the fewest assumptions should be selected.”

How could so many problems be distilled down into one unifying theory? 

“Do you have a history of trauma?”  an internist once asked me after hearing my symptoms.  My cholesterol in the 400’s and my abnormal neurologic exam made it difficult to chalk this all up to being “in my head.”  I realized he must be referring to the landmark ACE study, which links childhood adverse events with adult chronic physical and psychiatric conditions.   “I suppose it depends on what you consider traumatic,” I responded...For me, sitting through the first 20 minutes of “Bat Man Returns,” was trauma.

I thought to myself, "I’ve been lucky.  I’ve not been neglected, nor physically, emotionally or sexually abused.  I did not have a time in my early childhood when I was separated from my parents who by all accounts loved and wanted me and my brothers and sister.  I was never bullied.  There was no trauma in the obvious sense of the word."
 

If not childhood adversity, then could there be another unifying theme for what at times felt like the seven plagues? Maybe the universe wanted me to learn intimately….about ALL of these conditions... so I could help others.  At least that would bring some purpose, some reason. 

***

The recognition that I fell on the hypermobility spectrum came only recently. I began noticing a number of health issues I'd struggled with, namely MCAS/Mast Cell Activation Syndrome and POTS (Postural Orthostatic Tachycardia Syndrome) also occurs in people with Ehlers Danlos (ED) - a group of genetic connective tissues disorders which can result in loose joints, stretchy skin and abnormal scar formation.  I am flexible (which is likely why I gravitated to gymnastics).  Though I don’t have Ehlers Danlos, I do fall on that spectrum, meaning I likely have an affected gene, but not affected enough to warrant that diagnosis.

MCAS/Mast Cell Activation Syndrome - again, very common in people on the hypermobility spectrum - results when mast cells release a range of immune mediators including high levels of histamine.  The result can be wide range of hard to diagnose symptoms throughout the body including migraines, diarrhea, sinus pain, burning eyes, syncope/fainting, distractibility, brain fog, irritability, interstitial cystitis (feeling like you have a urinary tract infection when you don’t actually) to name just of few. It looks different in different people.  If you know anyone who seems to react to “everything” they may have a mast cell problem.

POTS/Postural Orthostatic Tachycardia Syndrome  is a condition in which a change in position from lying down to upright results in increased heart rate.  Symptoms can include palpitations, lightheadedness, nausea, heaviness in lower legs, blurred vision or cognitive problems (due to decrease in blood flow to the brain).   Such symptoms can get worse with prolonged sitting, standing, alcohol, heat, exercise or eating a large meal. 

Many people with MCAS and/or POTS are diagnosed with Chronic Fatigue Syndrome, also called Myalgic Encephalomyelitis, and/or Fibromyalgia as I would’ve been, had I persisted on the conventional/allopathic path. 

***

Each time I thought I was improving, I would be humbled by a severe headache, or overwhelming fatigue. Over years (literally years), I learned this was a battle I couldn’t win,  in part because it was at battle with myself.  

Instead of fighting, I simplified - removed everything that didn’t matter to me. I'd lost energy for and could no longer tolerate TV, stuff, ego driven aspirations…. I let go of relationships and activities that were no longer meaningful for me.  By necessity, I made my life simple and closer to what nature had intended.

Too, I realized my excessive focus on my health, was reinforcing a belief that I had total control over the outcome. Instead of putting my remaining energy into trying to further fix my biochemistry,  I started to grow a spiritual life - through writing and eventually reading books by spiritual writers. I learned to trust and listen to myself.  This brought moments of peace I couldn’t find in functional medicine forums or illness related facebook groups.  

Two weeks ago, while enjoying a whimsical book, the author charged me to ask (and expect) the universe to deliver a gift...within 48 hours.  The universe was to respond, “My pleasure.”   Not wanting much in the material sense, I was curious, what (if anything), I might receive.  After all I’ve described above, you’d think I’d have something to ask for...I didn’t...I’d mostly stopped looking and stopped grasping.  I was relatively at peace.

Within one hour of my request, I happened upon the work of Dr. Sharon Meglathery and her RCCX theory. There it was - my gift.  Brilliant.  It was all right there and in many ways, my story was all right there. 

Dr. Meglathery is a psychiatrist and internist with a health history very similar to my own.   Her theory explains a great deal for the many of us with both hyper-mobility (or with a family member with hyper-mobility) and an unusual mix of chronic health issues.  While I pride myself in my ability to connect the dots, here was someone who’s harnessed this ability tenfold.  We spoke at length by phone.  Aside from her obvious intellect, she’s remarkable in her generosity of spirit and sense of moral responsibility to get this information “out there”.

According to her theory, the “co-inheritance of a cluster of highly mutable genes,” collectively referred to as RCCX, “may confer vulnerability to familial clusters of overlapping syndromes of chronic illness (hyper-mobility, autoimmune disease, Chronic Fatigue, MCAS, POTS, and psychiatric illness, etc.).” Basically there’s a cluster of genes that are inherited together, they each can mutate easily and because they're big players, if they do have a mutation, they can make people vulnerable to wide range conditions and symptoms.

That these genes are inherited as a block as opposed to being inherited separately, doesn’t mean a mutation in one causes a mutation in all.  There does, however, seem to be a high rate of co-inheritance of mutations in two of the genes - the gene that relates to hypermobility and the gene that relates to an impaired hormonal stress response that can result in chronic physical or mental illness in large part due to the mast cell activation it causes. 

This makes hyper-mobility an especially important marker for physicians and other practitioners to consider when meeting anyone seeking help for chronic medical or psychiatric conditions.  This seemingly unrelated trait, can be big clue as to what's going on.

And for those who are not ill, hypermobility may suggest a vulnerability to becoming ill (physically and/or mentally) after acute or chronic stress.


While the conditions (described below) can occur in one person and/or sporadically throughout families with this RCCX gene cluster, women are usually impacted the most.  One person (ie. myself and Dr. Meglathery) in a family can seemingly be hit the hardest or at least with the physical aspects.  Brain related symptoms can predominate for many.

The genes (oversimplified):

(1) TNXB  - codes for tenascin, a protein involved in collagen architecture.  A mutation here could cause hyper-mobility to varying degrees (from none to Ehlers Danlos).   The integrity of our connective tissue is also important for our gastrointestinal lining, our blood vessels, our gut blood barrier and blood brain barrier.  Loose connective tissue can also impact us by way of upper cervical (neck) instability which can impact the vagus nerve, which has an important role in preventing brain related symptoms and inflammation. 

(2) CYP21A2 - codes for an enzyme, 21-hydroxylase which is pivotal in hormonal pathways involving progesterone, and less directly androgens.  A mutation here is associated with an “exaggerated stress response in the setting of low basal cortisol." This is best described as “tired but wired.” Seemingly, only one copy of this gene (meaning from one parent) is necessary for someone to be vulnerable to medical or psychiatric illness after severe acute or prolonged stress.  

(3) C4 - codes for complement C4 - a protein involved in the immune response.  A mutation here could result in autoimmunity - the immune system overreacting and essentially becoming destructive to specific areas/functions of the body such as in Type 1 diabetes, multiple sclerosis and rheumatoid arthritis, to name a few. 
 
“I posit that a child carrying a CYP21A2 mutation has the same brain as a child raised in adverse circumstances,” says Dr. Meglathery before describing the structural differences in the brain including enlarged limbic structures (amygdala).

In utero and infancy, the brain (of someone with a CYP21A2 gene mutation) is exposed to low basal and spiking cortisol levels which leads to a brain that is essentially wired for danger, not unlike the brain of someone with PTSD.  Decreased cortisol levels result in the brain releasing ACTH (Adrenocorticotropic hormone) and CRH (Corticotropin-releasing factor) - a hormone involved in the stress response.  When stress is too high or too chronic, the pathway is overwhelmed and brain inflammation occurs.

This decreased ability to deal with stress (and thus propensity to inflammation), according to Dr. Meglathery, “raises one’s susceptibility to PTSD/Post Traumatic Stress Disorder  or other forms of disordered emotional processing.”  The overwhelm of this 21-hydroxylase (the enzyme that’s not working up to speed) can trigger an inflammatory cascade resulting in  all of the conditions mentioned above ie. MCAS, POTS, CFS/ME, (as well as chronic inflammatory and/or biotoxin illness as is seen in Lyme Disease, Mold Toxicity, Epstein Barr Infections, etc.).  Associated psychiatric issues cover the full range from anxiety, panic, OCD, depression, bipolar disorder, ADD/Attention Deficit Disorder, hyper-focus, autism, sensory processing, and psychosis. 

RCCX Theory will likely change the way we think about chronic physical and mental illness.

***

While I’ve worked with many children and adults with early trauma and disrupted attachment, I’ve also worked with many who didn’t have this (known) history, but seemed wired as if they had.  Some were told by therapists they must have had trauma they couldn’t recall.  Some even decided they were abused as a way to make sense of their heightened sensitivity and stress response.

At the “expense of emotional processing and possible psychiatric illness,” Dr. Meglathery describes a potential for "brilliance and high intellectual capacity.”  She says, “With increased threat detection and enhanced stress response, if present in moderation, comes some gifts, including enhanced empathy, ability to hyper-focus/obsessions/special interests and unusual abilities (often in music, arts or abstract thinking).” 

I’m not the only person in my family with some seeming “out of blue” abilities.  And while I’ve claimed few of these, I’ve quietly wondered how it is that I was able to write music and make art without formal training. And, yes, at times in a hyper-focused and obsessive manner. 

Also striking is the uncanny tendency for those with the RCCX phenotype to marry or have friendships with others on the RCCX spectrum.  If you are someone who falls on this spectrum, your relationships will likely confirm this.

***

But is this theory worth knowing?… Is it fatalistic, self-indulgent, or is there something of use here?  Is there a reason to share this information...not in 25 years when this gets fleshed out by geneticists, but right now? 
 

I’ve had tremendous benefit from dietary interventions, exercise, specific targeted nutrients, appropriate treatments for infections and toxicity, and multiple lifestyle and supplement strategies to lower my histamine levels. I’ve also made lifestyle changes including, as I said, simplifying (everything), reducing stress, doing more of what I love and building a spiritual practice that reminds me that I control very little in this world, and that I'm part of something larger than myself - here for a purpose...no matter how flexibly inflexible or brilliantly brain foggy I may be on a given day.  Had I known this theory, would I still have changed my life?.. or would I have accepted that much of my destiny was in my genes?

I might actually have changed my life sooner.  I might have welcomed a “good reason” to take better care of myself.  I might have taken the phrase "daily stress” more seriously.

My lifestyle changes and spiritual growth helped me - to put it in more physiologic terms - “shut off my acute stress response,” which was making me sick.  And according to Dr. Meglathery, “If you can figure out how to do that, then the whole cycle of elevated CRH (the stress hormone), inflammatory cascade, Mast Cell Activation Syndrome, and elevated progesterone decreases (not gone but lessens).” 

I wrote this post, because I do believe this understanding can move people more quickly to a diagnosis/es, assist in more effective targeted treatments and help those already in treatment recognize their vulnerabilities and adjust their lifestyle choices accordingly.

There are many roads to healing.  One is the path of intellect and information.  There are endless online groups overflowing with smart people who have a great deal to share.  Such groups have helped me connect some dots. They’ve also kept me focused on illness.  Another path is more mindful, spiritual, or however you want to call feeling at peace in the moment and in your body.  In my own healing, I used and still use both.

I look forward to using the new tools and understanding that Dr. Meglathery’s work brings me for my own health, as well as those who come to my office.  I’m already asking patients, “Are you hyper-mobile, double jointed, extra flexible, have lax joints or is there anyone in your family that you know of who does?”  I’m surprised at how many actually are, or say they aren’t before they unintentionally demonstrate to me that they are.

Dr. Meglathery’s theory has taught me many things, but perhaps none more necessary than the acceptance that my greatest vulnerabilities which have brought me some of my “darkest days” are intimately intertwined with my greatest strengths, which have brought me joy and purpose.  Instead of shying away from some of my abilities, I’m more likely to claim them now.  In all, her discovery has moved me closer to a sense of wholeness - something I wish for anyone reading this.

Thank you to Dr. Sharon Meglathery, her patients and to all of those who are helping to move this information forward.

​For a more detailed explanation of Dr. Meglathery’s work, as well as a list of associated conditions, visit RCCX Theory at: http://www.rccxandillness.com/
38 Comments
Caite
7/1/2017 09:00:44 am

Thank you for posting this fascinating article and sharing your remarkable health journey. It certainly does "tie some dots together"!

Rookie question here, regarding this quote from Dr. Meglathery: “If you can figure how to do that, then the whole cycle of elevated CRH (the stress hormone), inflammatory cascade, Mast Cell Activation Syndrome, and elevated progesterone decreases (not gone but lessens).”

I didn't realize elevated progesterone was involved in mast cell response? I've been under the impression that progesterone could help quell the mast cell over-activity. Would you be able to provide any clarification on this matter?

Many thanks, and all the best to you in health and wholeness!

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Lorraine
7/1/2017 04:06:04 pm

You really ought to be considering chiari as one of your problems.

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Courtney B Snyder link
7/2/2017 09:21:31 am

Thanks Lorraine - Yes, some of my past symptoms would suggest that. I no longer have the neurologic symptoms (ie. neck pain, subtle problems using my hands, leg weakness, etc. When I did I saw a neurologist and neurosurgeon and my MRI's were normal. For space, I had to leave out much of this information. Thanks for commenting.

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Courtney B Snyder link
7/1/2017 06:27:32 pm

Thank you, Caite. I don't believe she was suggesting Mast Cell Activation Syndrome led to elevated progresterone, but that elevated progesterone is another result of the 21-hydroxylase not working well (because of a CYP21A2 mutation). Due to space, I didn't discuss the other hormonal dysregulation that usually occurs as well. While MCAS can certainly be a big part of RCCX, people can have MCAS without this RCCX phenotype. Thank you for your great question - I think I need to make that clearer. Courtney

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K
5/31/2018 09:28:10 pm

I'm interested in the progesterone angle. Specifically, I show symptoms of progesterone *deficiency* (spotting in the week before my period, luteal phase defect, ovarian cysts late in each cycle, clear estrogen dominance with a longer 2nd finger than 4th finger, even though I have most of the markers for CAH too). I ran across a source somewhere that suggested that excess testosterones and androgens could be converted to estrogen in female bodies, which could explain this (at least in androgen insensitivity syndrome, but that seems like quite the opposite situation here)

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Keith Berndtson, MD link
7/1/2017 08:33:34 pm

What a beautifully written description of the genetically associated problems that so many of are seeing in practice. I treat CIRS. Whenever the ordering physician runs a C4 level rather than a C4a level, the C4 level is low because of rapid conversion into C4a, which is high. I welcome your detailed perspectives on methods of coping with RCCX. I hope you will continue raising awareness about this syndrome without neglecting your mission to simplify life. - kb

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Courtney B Snyder link
7/2/2017 09:32:05 am

Thank you, Keith. I look forward to writing about more specific areas that I have already been addressing, ie. Mast Cell Activation Syndrome, Biotoxicity, addressing acute stress response, etc. There are other areas involved with RCCX, that I still have a great deal to learn about, but hope to write about them as I gain more experience. Thanks again, Courtney

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Sandy Sitzman
7/2/2017 07:46:27 am

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Laura link
7/2/2017 10:28:45 am

I am not a scientist by training, nature or call so absorbing some of the info herein is difficult but very worth the effort. It seems connected, for me, to my sense of living in an era where everything is shifting. My intuition arising from my experience as a psychotherapist as well as my own life experience is that some sensitive individuals are manifesting this shift in their physiological experiences. In other words, what is happening to us in our bodies, including our brains, is connected directly to what is going on all around us in the world. We are poisoning ourselves as we are destroying our Mother Earth and seeing and experiencing that is also an opportunity for awakening and engaging in a deeper level of healing and enlightenment. My sense is your work is that manifestation.

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Courtney B Snyder link
7/3/2017 02:49:01 am

Thank you, Laura. I do believe there is an interconnectedness to all things. A good friend of mine, Dr. Judy Tsafrir, recently wrote a post which is very much in line with your point. It is at: http://www.judytsafrirmd.com/a-total-solar-eclipse-in-leo-and-holistic-health/
Thanks again, Courtney

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Angela Farris
7/31/2017 01:08:21 pm

Wow! Wow! Wow! I'm having a difficult time explaining how I feel right now because your article has helped me to connect some dots that I've been trying to connect for myself for years now, but the situation has escalated to me being desperate to connect them for my son who's really struggling right now. Wow! I cannot thank you enough for taking the time to explain this information in such great detail and in laymen's terms.

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Courtney Snyder link
8/2/2017 09:00:57 am

Angela - Thank you - for your enthusiasm. I do hope some of those dots you're connecting will help you both. The feeling you're conveying is how I felt when I came across Dr. Meglathery's work. Likely your own story will go on to impact another...and so on...and so on. Thanks again.

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Kate Barnes link
8/1/2017 01:14:35 pm

Found your blog fascinating. So many extraordinary parallels to my life & health problems. Thank you for writing such an interesting & uplifting piece ..

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Courtney Snyder link
8/2/2017 09:06:29 am

Thank you, Kate, for taking a moment to comment. I think one of the challenges of these types of health issues is how seemingly "healthy" one can look. It makes it difficult to not only find answers, but to have this experience validated. It was my hope in writing this to offer that to others with similar struggles.

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Kate Kolb
8/6/2017 09:53:16 pm

Courtney, thank you for sharing your research and your experiences here. I always find what you have to share to be so intriguing. To be honest I came to your page after feeling a need to look at your art, which I find so calming, after viewing some fiber art today at a gallery and being reminded of your work. And then being reminded of you again tonight after reading about breastmilk and it's relationship to gut health. Upon visiting your page I was excited to see this somewhat recent post. Thanks for sharing your knowledge and insights!

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Courtney Snyder link
8/14/2017 09:57:41 am

Thank you, Kate - So nice to read this from you. And thank you for commenting on my art - I've felt ambivalent about having it on this site, but comments such as your makes me glad to have it here.

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Megan
8/17/2017 07:39:16 am

Hi Dr. Snyder--As a mental health therapist currently undergoing a total paradigm shift based on what I have learned about the relationship between epigenetics, the microbiome, toxicity, etc., and all forms of illness, I've found your blog immensely useful for synthesizing the information I've picked up here and there from different resources. It's also incredibly refreshing to encounter a truly holistic psychiatrist, as evidenced by the range and depth of your blog posts. (not to mention the gravity of your personal journey with healing). It's deeply inspiring, and if I were a physician, I would absolutely be contacting you for mentoring services.

This is the first place I've run across this RCCX theory, and it's so fascinating. In addition to being really inspired by Dr. Meglathery's dedication to the work and advancement of awareness, I'm excited about her “I posit that a child carrying a CYP21A2 mutation has the same brain as a child raised in adverse circumstances,” says Dr. Meglathery before describing the structural differences in the brain including enlarged limbic structures (amygdala).

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Megan
8/17/2017 07:43:27 am

I accidentally submitted my reply before I was finished typing. I was referencing Dr. Meglathery's quote-- “I posit that a child carrying a CYP21A2 mutation has the same brain as a child raised in adverse circumstances--'' and was going to clarify something: According to the theory, could someone carrying the mutation and experiencing the psychological responses NOT also express the hypermobility feature?

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Courtney B Snyder link
8/17/2017 05:29:01 pm

Hi Megan - Thank you for you kind words. And, no, someone doesn't have to have the hypermobility feature to have he CYP21A2 mutation, but it seems to very often if not most often, be the case. If someone doesn't have hypermobility, it is very likely they will have a family member who does. Also know that HYPOmobility (having less than normal joint mobility) which is less common, can also occur due to a TNXB mutation which again confers a much greater risk of a CYP21A2 mutation, but not 100%. I hope this answers your questions. Another interesting potential marker for the CYP21A2 mutation (remember a mutation can have a range of impact from slight to more significant) - anyway, for women with this mutation, if you look at their hands palm down - the ring finger will often be longer than the index finger. This is usually the case for men, but not necessarily women. This relates to again hormonal effects in utero. This marker doesn't have to be there for someone to have this mutation. I have this marker as well.

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Megan
8/18/2017 08:17:24 am

That does answer my question, thank you. Interesting that hypomobility can occur too.

Audrey Walker
11/22/2017 05:28:19 am

Very interesting. This explains why limbic retraining (DNRS or the Gupta Programme) is helping so many of us with all these chronic illnesses.

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Courtney Snyder link
3/5/2018 02:27:53 pm

Yes, Audrey. I think you are absolutely right. I suspect that many people who are benefitting from DNRS and other limbic system training strategies, are actually impacted by this RCCX cluster.

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Terri
12/12/2017 08:46:05 am

Hi
I have hypermobility, ADHD an autistic daughter and many of the other things listed. Are there any tips or guidelines to follow to alleviate any of these symptoms

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Courtney Snyder link
3/5/2018 02:40:17 pm

Hi Terri - Part of why this is difficult to answer is there are so many potential "downstream effects" of each of these genes - treatment approaches really get at what is being evidenced in a given individual. There are strategies to address mast cell activation, strategies to lower the acute stress response, strategies to address elevated pyrroles and other nutrient related issues, strategies to address hormonal dysregulation, strategies to address autoimmunity, and so on. For many if not most there will brain related symptoms that can benefit from having specific nutrient imbalances corrected. For more on this, you may want to read my post about Dr. Walsh's work. While hyper-mobility is not part of that understanding, I and others who follow RCCX theory, believe that many (if not most) people with brain related symptoms are impacted by RCCX. Dr. Walsh's work identified the most common nutrient imbalances in those with brain related symptoms. Correcting those imbalances for most people is very helpful in improving symptoms. I find that to be a good starting point along with addressing mast cell issues. There is a lot online on Mast Cell Activation. I hope to write more about this.
Courtney

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Sarah McCunn (England, UK)
4/6/2018 01:08:28 pm

Thank you so much for this piece. I've just wept my way through it and am now typing on a wet keyboard..

I'm hypermobile, as was my grandmother before me: I did ballet and gymnastics and I always remember the day at school when the boy who sat next to me recoiled in his seat having caught sight of my elbows which were bent in a rather disturbing fashion as I set my hands on my legs. I'd never realised this till he pointed it out.

For as long as I can remember I'd had these sudden violent head pains that would come and go quickly, but scare me, and palpitations. I was very clumsy, especially through puberty. Anxiety and high levels of empathy (so I absorbed too much of other's stress) meant I turned to unhealthy escapes such as alcohol and drugs. In my early to mid 30s I spent 4.5 years in a very toxic and emotionally abusive relationship and from there it seemed my systems started to collapse on me. Hives, dreadful fatigue, muscle and joint pains, food sensitivities left right and centre, dreadfully painful periods, hirsuteness, complete inability to deal with stress. what felt like ADD coupled with Alzheimers, endless napping, I could go on and on.

On the positive side, as you describe, I've always been talented in the musical arena and people tell me I have a magic which makes them want to confide things in me they never have before. People gravitate to me which can be a good and a bad thing. Bad because I'm not good at bounderies.

To cut a long story short-ish, after it all started to get too much, I turned toward a spiritual path (having been raised a complete skeptic). I've got into yoga, meditation. I've done native medicine retreats to help get a grip on my health anxiety and tendency not to look after myself. I've made so much progress here, and most importantly, peace with myself to a large degree, but still though the issues persisted. In January I cut out carbs and went keto, in a last ditch attempt to improve things. Micraculously, my symptoms all but went away, life was a different place for me. IN this state I instinctively simplified and minimised down my life as I knew I'd survive better this way. In the last few days though, my symptoms have returned. Not full force, but they've snuck back in and I was distraught. An hour ago I was sat in the park near my house, crying and praying for help. An hour later, I read this article and you describe my life in the above. So thank you infinitely. I will look at the work of Meglathery now. I just feel so relieved to understand this witches brew of symptoms I've been having. On some level I just knew they were connected and now I feel vindicated. Thank you, thank you.

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Courtney Snyder link
4/7/2018 06:02:17 am

Sarah...Thank you so much for reaching out...from across the Atlantic. I'm sorry that you to have struggled with what you described (and more, I know). I very much relate to the experience of feeling like you have things figured out and "under control" only to be hit with symptoms out of the blue. It can be demoralizing. Thank you to for sharing what has been helpful for you. I've recently returned to eliminating carbs and as before have found significant benefit. For me, those out of the blue symptoms, that are much less now, usually seem to be related to mast cell activation (of which there are a number of things that can be very helpful). It took me a long time to recognize what was going on and what the triggers were for me. In the functional medicine world there is a great deal of information out now about mast cell activation. For many of us, biotoxicity, (for example mold toxicity or toxicity from yeast, lyme, etc) is worsening the mast cell issues. Addressing these if present can have a big impact. If you're not already familiar with mast cell activation, you may find this comprehensive blog post useful (see link below). You may also find the RCCX facebook group helpful.
Thank you, again. Your story had me in tears.
I'm wishing you further peace and healing.
Courtney

https://www.hoffmancentre.com/2017/11/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/

Reply
Sarah McCunn
4/7/2018 06:21:25 am

Thank you for your lovely and caring reply Courtney. Tears again for me haha! I spent quite some time looking at histamine intolerance a couple of years ago and yes, it makes sense! I've been sneaking certain 'super foods' back into my diet, and lots of avocado, and I think I've tipped over in the histamine bucket. On top of that, we had lots of flooding outside my basement flat and the wall in my room had lots of mold! The landlord is sorting this out now but it might explain why I ache so much. Anyway, thank you thank you for the care and the resources. I'll get on the case.
Namaste and infinite gratitude!
Sarah

Reply
Courtney Snyder link
4/16/2018 12:40:40 pm

Sounds like you may be discovering the roots (mold) of the roots (mcas). A great and short resource on mold toxicity is Neil Nathan's online book - it summarizes the 2 schools of thought on Mold toxicity, testing and treatment.
https://www.amazon.com/Mold-Mycotoxins-Current-Evaluation-Treatment-ebook/dp/B01ITWZRH6/ref=sr_1_1?s=books&ie=UTF8&qid=1523907326&sr=1-1&keywords=neil+nathan

I love your phrase "infinite gratitude" and will be passing that on.
Peace to you as well,
Courtney

Reply
steve
12/16/2018 04:21:01 am

If the woman running the RCCX theory website mentioned anything about nutrients (she doesn't, other than zinc), and didn't instead prominently state that research was needed to develop "Pharmaceuticals", then donating to her work might be worthwhile. Her work is steering directly to drugs which will cover up problems, instead of to nutrients which ARE needed at different levels by different genetic bases. What a shame.

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Courtney Snyder link
8/9/2019 05:15:36 am

Hi Steve. Thank you for raising this point. I do think it's important. My own interest in RCCX moving from theory to an established understanding is so that any and all modalities that people seek can be employed. Though I don't prescribe psychiatric medications at this point (as my own education is primarily focused on addressing root causes), they are still lifesaving for many and also allow many to have the necessary stability to do use nutrient approaches. I suspect for a lot of people seemingly touched by RCCX, they would gladly welcome any intervention that would allow them to function, not be in pain or suffering. Thanks again, Courtney

Reply
Erika
3/10/2019 06:47:49 pm

This article was a fantastic read. I found an article on joint hypermobility and was stunned on the all the other correlating disorder and diseases. I have within the past year been exhibiting MCAS with strong flare ups of hives all over my body, headaches and other relating symptoms. My mental health deteriorated and I became suicidal. I changed my diet, my surroundings and became obsessed with finding the cure to this chronic urticaria. I thought h.pylori was the cause as I came out positive and it did go away for a couple months after....but it came back with a vengeance recently. Apart of me is still convince it may be parasite and mold toxicity related as I have done massive research into it but now I'm seeing other factors are coming into play. I'm hopeful. I've made it this far by doing my own research and I feel like this time around it's asking for me to surrender control. When it first happened I was obsessed to the point of making myself sick. Now, I'm working on finding a balance and not allowing my constant state of enhance threat detection to drive me insane. Thank you Thank you Thank you.

Reply
Courtney Snyder link
8/9/2019 05:09:06 am

Hi Erika. You're very welcome. Thank you for your comments. As this is a very last response, I'm hopeful that you've found more answers and continue to find and seek balance. Courtney

Reply
Shelly
7/11/2019 01:31:45 pm

Do you believe that this cluster of genes if presented in a woman (ie, me) could increase chances of autism in children?
I ask bc these symptoms seem very similar to mine and I now have 2 children on the spectrum

Reply
Courtney Snyder link
8/9/2019 05:06:52 am

Yes, Shelly. Though RCCX is theoretical at this point, autism spectrum disorders are one of the associated conditions. https://www.rccxandillness.com/
If you scroll down the page on the above link, it will list the many associated conditions. You may find the facebook group (RCCX and chronic illness) useful. Courtney

Reply
Jolene link
7/15/2019 09:57:04 pm

I have recently done the mold illiness panel. And had two tests to come back abnormal. Mmp9 was 661 and msh was 23. Should I be concerned

Reply
Courtney Snyder link
8/8/2019 02:33:30 pm

Jolene - Here is a link to the optimal ranges that those doctors who use Dr. Shoemaker’s approach us. I used to use these, but now rely instead on the mold toxin tests. I think you’ll find this link helpful.
https://www.survivingmold.com/diagnosis/lab-tests
Courtney

Reply
Lisa Marlene Edelsward
12/3/2019 08:43:23 pm

Thank you for this great post -- I will be sharing it.
I have suffered almost all the physical symptoms described by the RCCX theory, but I have been fortunate to have avoided most of the psychiatric ones. Severe fatigue always led to mild chronic depression, but it was so obvious to me that this was am aspect of the physical issues and not an emotional one. I always felt that my mental health was the only strong and healthy part of me!
I have two questions. The first is regarding hormones. When I was young and first married, I was diagnosed with endometriosis resulting in infertility. The "cure" given me was to "rest the system to allow the endometriosis to heal." I was given 6 months of hormonal medication to stop my menstrual cycle -- two days before flying to a remote location abroad to conduct my PhD research, with NO guidance re side effects or warnings or anything. So, of course I took it the whole time, never suspecting that the terrible illness that began shortly thereafter could have been caused by it. I was also rendered permanently infertile, chronically ill, and my hormones have been a mess. It's been thirty years. There have been periods when I managed to get myself better, even complete my studies & get a job, before something else would cause the next crash. (The whole list, I won't repeat it all.) Last year I was doing better and even started writing again -- my bucket list, get the books written that have been germinating in my brain for decades. Recently, a new relapse, not so severe, and this time no evidence of mast cell activation (which has been truly horrible). My question: given the implications of hormones, how should I (ask my doctor to) modify my hormone supplements? As I said, my hormones have been a mess and I've been on hormone meds for decades (thyroid, sex hormones). I am currently on bioidentical estrogen and progesterone. I've been told that progesterone is essential to balance estrogen. Does this relapse suggest that my dose is too high now? any thoughts or suggestions?
Second question: I really believe in and have benefitted from orthomolecular approaches. I take a ton of supplements (my only meds now, other than hormones and antihistimines in event of mast cell activation). My schedule of supplements was based on extensive testing and consultations. But if this theory were unknown even by them, they would have have known to include whatever specific supplements would help to balance my system. Any suggestions here? Where or how could I learn how to tweek my supplement regimen?
Thank you so much! Lisa

Reply
Courtney Snyder link
7/18/2020 04:17:01 am

Hi Lisa. Apologies for this very late response. You raise a lot of excellent questions. While I'd be unable to give you direction as far as hormones, re: your second question - Not unlike conventional medicine, even in functional medicine, there are different schools of thought and things can be pretty compartmentalized (even though our bodies don't work that way)- ie. those who focus on nutrient imbalances, others on inflammation and the gut microbiome, others on mast cell activation and others on toxicity, such as mold toxicity. In my own work, I try to integrate these different perspectives. For many , I find that at the root of their mast cell activation, nutrient imbalances, and hormone dysregulation, they have mold toxicity. When it comes to brain related symptoms, but also chronic fatigue, this is much more common than we ever thought. If you've had mast cell activation, you might find my last post about mast cell activation helpful (and there again, I talk about the role of biotoxins specifically mold toxicity).

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    Courtney Snyder, MD

    I'm a conventionally trained child, adolescent and adult psychiatrist.  My current approach to health is both holistic (pertaining to the whole person) and functional (addressing the root causes of illness). I write this blog to share what I've learned.

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