Connective Tissue Disorders/Ehler Danlos, the ECM and Chronic Issues - MCAS, CIRS, POTS, CFS, IBS, Dystonias, Pain, Proprioceptive Disorders, ETC.!

[gottathink]

Let's review the subject of allergies and mast cell activation disorder, the kind of affliction that leaves you in total dysfunction for daily life. Many might have heard "histamine intolerance" instead.

Sums up my lifelong health issues.
Recently I have cut more out of my diet and the inflammation in my body has reduced further. Because I’m feeling better I am able to identify the foods that trigger inflammation, sneezing, and elevated heart rate. It sure is great to have more knowledge on the subject, thank you Gaby.

 

[Drea]

From Midwestern Doctor we also learn that "structured water is essentially the same as liquid crystalline water." He lists some of the ways that make structured water.

I asked Grok: How can I make structured water for health benefits?
One of the options that Midwestern Doctor didn't list was :

Using Crystals or Gemstones

• How: Place cleaned, food-safe crystals (e.g., quartz, amethyst) in water for several hours.
• Claim: Crystals allegedly impart energetic properties to the water, structuring it.
• Steps: Wash crystals thoroughly, place in a glass pitcher of filtered water, and let sit for 4–12 hours. Remove crystals before drinking.
• Caution: Ensure crystals are non-toxic (e.g., avoid malachite or cinnabar, which can leach harmful substances).

I then asked: How can I increase zeta potential in the body.

Methods to Improve Zeta Potential in the Body

-Optimize Hydration with Quality Water
Why: Zeta potential is influenced by the charge and structure of water molecules around cells. Well-hydrated cells maintain better surface charge, reducing clumping.

-Increase Electrolyte Balance
Why: Electrolytes (e.g., sodium, potassium, magnesium) influence the electrical charge in bodily fluids, affecting zeta potential. Balanced electrolytes help maintain proper cellular repulsion.

-Earthing or Grounding
Why: Contact with the Earth’s natural electric field may donate electrons to the body, potentially enhancing cellular charge and zeta potential.

-Consume Antioxidant-Rich Foods
Why: Oxidative stress can reduce cellular charge by damaging membranes. Antioxidants may protect cell surfaces, supporting zeta potential.

-Use of Ionized or Structured Water Devices
Why: Some devices claim to increase water’s negative charge, theoretically enhancing zeta potential when consumed.

-Exercise and Circulation
Why: Physical activity improves blood flow and reduces red blood cell clumping, potentially supporting zeta potential by enhancing fluid dynamics.

-Avoid Toxins and Pollutants
Why: Toxins like heavy metals or chemicals can disrupt cellular charge and reduce zeta potential.

Another one worth mentioning is DMSO for structuring water. "When DMSO is mixed with water, it can form hydrogen bonds with water molecules, affecting the hydration and structure of water. "

 

[Fluffy]

Quercetin’s Impact on Connective Tissue and Gastrointestinal Health​

Preserving Fascia, Muscle, and Connective Tissue​

The overproduction of inflammatory mediators like histamine and tryptase can weaken connective tissues. This is especially concerning for people with conditions like Ehlers-Danlos Syndrome (EDS), where tissue fragility is already an issue. Quercetin’s mast cell stabilizationeffects help protect fascia, muscle, and connective tissue from further degradation, making it a helpful option in supplements for mast cell activation.

Quercetin, Mast Cell Activation Syndrome, and Histamine Intolerance | The EDS Clinic

www.eds.clinic

 

[Fluffy]

Tetracyclines Inhibit Connective Tissue Breakdown by Multiple Non-Antimicrobial Mechanisms (2016)
https://journals.sagepub.com/doi/10.1177/08959374980120010501/
This study explains doxycycline’s protective effects on connective tissue especially through its MMP inhibition effects, including its effect on collagenase. It goes without saying that this is going to directly relate to its effects in connective tissue disorders such as Ehlers-Danlos Syndrome.

Matrix Metalloproteinases Inhibition by Doxycycline Rescues Extracellular Matrix Organization and Partly Reverts Myofibroblast Differentiation in Hypermobile Ehlers-Danlos Syndrome Dermal Fibroblasts: A Potential Therapeutic Target (2021)
Matrix Metalloproteinases Inhibition by Doxycycline Rescues Extracellular Matrix Organization and Partly Reverts Myofibroblast Differentiation in Hypermobile Ehlers-Danlos Syndrome Dermal Fibroblasts: A Potential Therapeutic Target? - PubMed
This is the big one, really. In short, doxycycline makes Ehlers-Danlos collagen look the same as the collagen of patients without Ehlers-Danlos under the microscope – in an extensive in-vitro study. This is linked to MMP inhibition. The summary here is worth reading: A Potential Therapeutic Target?

I found this webpage of someone else who’s put together some info from their own research. Lots of studies worth looking into.

Doxycycline / Doxycyclin – This might help: A collection of information, studies, and personal experience relating to supplements, medication and other treatments for Ehlers-Danlos Syndromes (EDS), Mast Cell Activation Syndrome (MCAS), Long Covid, My

 

[Gaby]

I still owe an update of proprioceptive problems in this thread, which is the subject that interests me the most because of its usefulness and lack of systematic coverage around the world. But for those wanting to learn more, and how various problems in EDS are addressed in Europe, you can get this book:

Amazon.com

Transforming Ehlers-Danlos Syndrome: A Global Vision of the Disease - The Epigenetic Revolution - Emergencies

"Transforming Ehlers-Danlos Syndrome" : What is the disease’s history? What are its clinical signs and symptoms? Is Ehlers-Danlos Syndrome really that rare? Is it necessary to modify the disease's current classification? How is it transmitted to children? How does it evolve over the course of a lifetime? How is it managed? What treatments are available to help patients improve their quality of life? How can confusing emergency situations for both patients and caregivers be managed?

These are only a few of the questions that this book attempts to answer precisely, with specific treatment regimens adapted to the unique situations that any family physician or specialist may encounter. Dr. Stéphane Daens collaborated with thirty specialists from around the world to get a better understanding of this disease, which remains underdiagnosed and poorly understood. Patients experience severe medical wandering and a more than two-decade delay in diagnosis because of the lack of knowledge about the disease. Although it is often confused with Fibromyalgia, Ehlers-Danlos Syndrome necessitates a completely different approach to treatment and management. It is a hereditary condition with currently unclear transmission pathways. This book introduces novel concepts involving the disease transmission and evolution over a lifetime. Aside from classical genetics, the role of epigenetics, mast cells, autonomous nervous system, proprioception, nutrition, and microbiota appears unavoidable.

Main author: Doctor Stéphane Daens. Co-authors: Doctor Isabelle Dubois-Brock, Professor Claude Hamonet, Professor Daniel Frédy, Doctor Trinh Hermanns-Lê, Mr. Olivier Hougrand, Professor Jaime F. Bravo, Professor Stephen W. Porges, Doctor Katja Kovacic, Doctor Jacek Kolacz, Mr. David Leroy, Mr. Dominique Ouhab, Professor Michel Vervoort, Professor Andràs Pàldi, Doctor Daniel Grossin, Doctor Pradeep Chopra, Doctor Norman Marcus, Doctor Jessica Pizano, Doctor Michael P. Healy, Professor David Levine, Professor Anne Maitland, Doctor Georges Verougstraete, Doctor Georges Obeid, Doctor Kambyse Samii, Doctor Richard Amoretti, Doctor Emmanuel Tran-Ngoc, Doctor Michel Horgue, Professor Antonio Bulbena-Vilarrasa, Professor Carolina Baeza-Velasco, Professor Andrea Bulbena-Cabré, and Mrs. Dominique Weil.

"This book is not only an anthology of what is currently known or said about Ehlers-Danlos; it is also a practical essay for both practitioner and patient." Prof. Claude Hamonet, Physical Medicine and Rehabilitation, Paris, France.

“In reading this volume, I have gained an appreciation for the progress that has been made in understanding and treating EDS.” Prof. Stephen W. Porges, Neuroscience, North Carolina, USA.

"Doctors, patients, and anyone else interested in EDS will find everything they have ever wanted to know about this disease in this fascinating book." Prof. Michel Vervoort, fundamental geneticist, Paris, France.

“Here is a new bible for EDS patients, that serves as a beacon, lighting the way for those in pain, often despair, and hiding in plain sight of the modern, biomedical community.” Prof. Anne Maitland, Internal Medicine, Allergy & Immunology, New York, USA

It's not the best of translations, but the essence of the information is delivered. Contributors include Stephen Porges of the polyvagal theory fame.

 

[RedFox]

Thanks for this thread Gaby. At a cursory glance (I still need to go over it in detail) I fit a whole bunch of the symptoms.

People can be very good at yoga, having very extremely hypermobile joints, and have no health problems at all. The combined problem of hypermobility and proprioceptive issues due to the conjunctive tissue problem, leads to a propensity to luxations and subluxations, pain, and even dystonias. And people with little hypermobility can have a lot of dystonias too, due to an anomaly of proprioception at the level of the conjunctive tissue. As we revise in a future post the symptoms and health problems in people with conjunctive tissue disorders, we'll understand better the functions and physiopathology of conjunctive tissue disorders.

Proprioception, meaning the sense of self-movement, force, and body position in space, is a field that science is only starting to understand. Proprioceptive signals, from receptors in the connective tissue all over the body, are transmitted to the nervous system where they have to be integrated with other incoming signals coming from sensory organs to create this sense of self in space.

People with problems at the proprioceptive level are bodily stupid. They stumble against the handle of doors when they go through them, against people, corners, stuff falls from their hands easier, etc. Paradoxically, when they're in movement, their proprioception works better or even better than average, so they can be great dancers, martial artists, etc. Provided that luxations, pain and fatigue don't bring their career to an abrupt end...

Yup! Out of curiosity @Gaby you mention the corrective lenses - did you ever have trouble navigating stairs as a kid? They always appeared as an optical illusion to me. My vision and proprioception took a very long time to line up.
Some stairs still terrify me even as an adult, maybe I need the prism lenses?

Yoga was good for me and I was quite flexible, however just with all exercise I could easily over stretch myself to the point of a sharp stabbing pain/cramp. This has led to chronic caution when it comes to movements.

On the note of proprioception, I ran across something today that may be useful?

Targeted vibratory therapy as a treatment for proprioceptive dysfunction: Clinical trial in older patients with chronic low back pain - PMC

Proprioceptive function declines with age, leading to falls, pain, and difficulties in performing activities of daily living among older adults. Although individuals with low back pain (LBP) exhibit decreased lumbosacral proprioception in various ...

pmc.ncbi.nlm.nih.gov

Targeted vibratory therapy as a treatment for proprioceptive dysfunction: Clinical trial in older patients with chronic low back pain​

Introduction
Proprioceptive function declines with age, leading to falls, pain, and difficulties in performing activities of daily living among older adults. Although individuals with low back pain (LBP) exhibit decreased lumbosacral proprioception in various postures, the mechanism by which reduced proprioceptive function causes LBP remains uncertain. Vibratory stimulation may enhance proprioceptive function; however, its efficacy in treating LBP has not been investigated. Thus, we investigated the feasibility of improving proprioceptive function and its effect on alleviating chronic LBP in older patients through targeted vibratory therapy (TVT) administration.

Methods​

This single arm designed trial included older patients aged >65 years with non-specific chronic LBP. TVT involved applying vibratory stimulation, matching the frequency of dysfunctional receptors, for 1 min daily over 14 days to activate proprioceptors; patients performed TVT three times daily at home. In cases of reduced proprioceptive function at multiple sites, TVT was aimed at the lowest frequency band value. LBP and proprioceptive function were evaluated at 2 weeks after TVT and at 2 weeks after the end of TVT in patients with declined proprioception in the trunk or lower extremities.

Results​

Overall, 56 patients with chronic LBP were enrolled; 32 patients were recruited for treatment based on a proprioceptive dysfunction diagnosis and 24 patients were recruited with a normal diagnosis with no significant differences observed between the two sets of patients in sarcopenia-related factors and clinical proprioception-related characteristics. No patient had any adverse events. Two weeks after TVT, the numerical pain rating scale score improved to <3 points in 78.1% of patients, with 73.1% of patients achieving a score of ≤ 3 points. Proprioceptive function improved in 81.3% of cases, and engagement in activities of daily living improved significantly.

Conclusions​

TVT demonstrated efficacy in improving proprioception and alleviating LBP in older patients with impaired proprioceptive function without affecting non-targeted proprioceptors.

And:

Effects of Rhythmic Sensory Stimulation on Ehlers–Danlos Syndrome: A Pilot Study - PMC

Ehlers–Danlos syndrome (EDS) is a connective tissue disorder characterized by joint hypermobility and skin extensibility and is often accompanied by chronic pain. Rhythmic sensory stimulation (RSS) can be defined as the stimulation of the senses in ...

pmc.ncbi.nlm.nih.gov

Effects of Rhythmic Sensory Stimulation on Ehlers–Danlos Syndrome: A Pilot Study​

​

Abstract​

Ehlers–Danlos syndrome (EDS) is a connective tissue disorder characterized by joint hypermobility and skin extensibility and is often accompanied by chronic pain. Rhythmic sensory stimulation (RSS) can be defined as the stimulation of the senses in a periodic manner within a range of low frequencies. Music plus sound delivered through a vibroacoustic device is a form of RSS and has demonstrated utility in managing pain. In this current study, we conducted an open-label pilot study of 15 patients with hypermobile EDS using RSS as the intervention. Posttreatment improvements were seen in 11 of the 15 patients (73%), whereas 3 of the 15 patients (20%) experienced worse outcomes. Of the 14 patients that completed the experiment, 6 participants (43%) were classified as “responders” to the device while 8 participants (57%) were classified as “nonresponders.” Responders demonstrated significant improvements in pain interference (51.5 ± 16 preintervention vs. 43.5 ± 16.4 postintervention BPI score) and depression symptoms (34.0 ± 15.9 preintervention vs. 26.8 ± 12.1 postintervention CESD score). Poststudy interviews confirm the improvements of pain interference, mood, and bowel symptoms. Furthermore, analysis of medical conditions within the responder group indicates that the presence of depression, anxiety, irritable bowel syndrome, and fibromyalgia may indicate a greater likelihood for patients to benefit with vibroacoustic applications. These results indicate a possible potential for RSS, delivered using a vibroacoustic device, in managing pain-related symptoms. Further research is necessary to elucidate the exact mechanism behind the physiological benefits of RSS.

 

[Gaby]

Yup! Out of curiosity @Gaby you mention the corrective lenses - did you ever have trouble navigating stairs as a kid? They always appeared as an optical illusion to me. My vision and proprioception took a very long time to line up.
Some stairs still terrify me even as an adult, maybe I need the prism lenses?

I don't remember having difficulty with climbing stairs as a child.

Prism lenses are needed if a check-up by an optometrist who is usually specialized in neurology and/or posturology, determines that your posture and perception is corrected or better with the prisms. People with Ehler Danlos, and possibly other non-hypermobile conjunctive tissue anomalies, tend to have double vision and this is corrected with the prisms. Normal people aiming to improve their sport's performance might need them for a few months until their posture is better. People with EDS usually have to use them for life. I'll do a little summary about this subject in the future about this info.

On the note of proprioception, I ran across something today that may be useful?

Yes, very useful stuff! Any stimulation in your conjunctive tissue like that will improve things. Even if it's scratching your skin... Though a massage would be better.

 

[Weontv]

Dupuytren's disease (also known as Dupuytren's contracture or Viking disease) is a condition where the fascia (connective tissue) in the palm and fingers thickens, causing fingers to pull towards the palm and become fixed in a bent position. It is named after French surgeon Baron Guillaume Dupuytren, who first described it in 1832.

As someone who has this, I am pretty sure it is not just localized in the fingers. It is one of those things where I think people say "I am just inflexible" and it probably manifests more often in the hands because people use their hands more than the other fascia in the body. This is also why I think its more prevalent in men, as men tend to work with their hands more.

"Globally, the male-to-female ratio ranges from approximately 3:1 to 9.5:1, with men being significantly more affected. A comprehensive meta-analysis estimated the worldwide prevalence of Dupuytren's disease at 8.2%, with higher rates in men."

I have stretched regularly for upwards of 15 years and have yet to see an increase in range of motion, in fact my flexibility is lowering as I age. In some of the basic movements I do, it feels like I can strum my tendons like a guitar string because they are stretched to their max.. and I can do certain things that will pinch nerves, it feels like some parts of my body are "too long" or "too short" for the rest of it.. its hard to explain.

Perhaps some of whats going on relates to the genetic expression of your parents? I am no expert but my dad was tall, and my mother is short.. I ended up tall.. maybe I got her tendons and my dads bones

Many of the same symptoms listed I have also experienced, a lot of them lessened or went away entirely once fat adapted.. I remember writing stuff in my skin when I was a kid.

It seems to be the complete opposite of Ehler Danlos, and yet very similar, interestingly enough.

Im gonna get some Quercetin and see if anything changes.

 

[lilyalic]

Thank you for all the useful info Gaby!! I believe I have MCAS but have always referred to it as histamine intolerance as it's mentioned in a lot of info regarding PCOS, endo and hormone imbalances in general.

I don't have hyper mobility I don't think, but suffered from eczema from a very young age, had throat and ear infections very regularly, lots of nosebleeds and was generally quite sick as a child.

It explains why I always get very itchy whenever I take opioids and it brings my eczema back temporarily, also why I feel like I've been in a car accident the day after yoga whereas my friend feels absolutely fine! Lots of years of inflammation to address personally. If I steer away from carnivore I wake up very sore everyday, headaches and the sciatica stuff! It's quite hard to stay on track sometimes with stress and when the pain makes you miserable, the miserable keeps you down in brain fog etc.

I may have missed it but is it passed genetically, could my son also have this? Can it lay dormant as such and be activated through stress factors (just thinking in relevance to Gabor mates stuff). Apologies if this has been mentioned, been trying to read as much as I can in free time.

Again thank you for your research!!! X

 

[lilyalic]

The genetic question was silly, ofcourse it's genetic, pretty sure if was mentioned too just realised as I was getting ready! Brain fog

 

[Alana]

Dupuytren's disease (also known as Dupuytren's contracture or Viking disease) is a condition where the fascia (connective tissue) in the palm and fingers thickens, causing fingers to pull towards the palm and become fixed in a bent position. It is named after French surgeon Baron Guillaume Dupuytren, who first described it in 1832.

In herbalism there is a specific plant for this condition, with a high rate of success: Cleavers (Galium aparine). I haven't used it personally for Dupuytren's, but I heard many stories from seasoned herbalists that have. It might be worth giving it a try?

The recommendation is to use it both internally and topically. Internally, alcoholic tincture, something like this one. Topically, extracted in oil as in this one. I don't know where you are located so I am just giving whatever links came first in my search. You can also make your own infused oil and/or alcoholic tincture if Cleavers grow in your area. And if only one option is available to you, get the tincture so that you can take it internally and apply it on your hands too, adding castor oil on top to drive the tincture deeper, below the skin. In general, Cleavers is a great lymphatic mover/cleaner with affinities to the lymphatic vessels in the face, neck, hands and the male reproductive system.

 

[Gaby]

I don't remember having difficulty with climbing stairs as a child.

What I meant is that stairs in my childhood were non-existent. There were literally no stairs in my upbringing.

People with fragile connective tissue due tend to be afraid of movement, kinesio-phobes. All within a context, many are great gymnasts, and then they get luxations. Then they hesitate to do something they were able to excel before. It's a syndrome of extremes and opposites: they can have attention deficit disorder, yet they're the brightest of the class. Prof Hamonet explains his point of view: they listen to an explanation once and that's enough, they got it. After that, any repetition is pure boredom. They seem to be dispersed, but they have paid attention to every detail. When he, Prof Hamonet, will wonder where he left his medical seal in the office, the patient will always respond, it's here/there, pointing at it. They will always come with the most complete medical dossiers, classified by orderly sections.

Another opposite: they have the urge to urinate all day long, or they can go an entire day without going to the toilet.

I believe I have MCAS but have always referred to it as histamine intolerance as it's mentioned in a lot of info regarding PCOS, endo and hormone imbalances in general.

Yes, in the nomenclature, you'll start hearing less and less about histamine intolerance and more and more about MCAS. The latter encompasses the syndrome better, the nature of its reactive origin in the connective tissue. Those who have mastocytosis from a bone marrow disorder are much more extremely sick and might require bone marrow interventions. It's a rare condition, but it exists.

Hopefully, one day, we'll see the entire medical establishment learning about the functions and marvels of the connective tissue, breaching the gap of everything divided by systems and organs. Connective tissue, connects everything.

 

[meadow_wind]

That's one side of the story. The other side of the story is that some people with EDS have hypermobility only in one joint or a few joints, which don't have to be the ones described in the Beighton score. Still others had hypermobility in the past, but no longer in the present, yet they're afflicted with various systemic health problems related to their connective tissue anomaly.

It seems unlikely that I would have this health problem, but reading this thread has me scratching my head because there are a few things that I can relate to:

As a kid, I was able to pull both big toes up to touch the foot. I can still almost touch the foot.
I was also able to wrap my feet behind my head (can no longer), and I sprained my ankles quite a few times.
Since my 20's I felt the need to take naps because of tiredness. I thought it was due to training or a lack of protein.
I've always had easy bruising. My skin is translucent; we can see the green veins.
I suspect I might have pelvic organ prolapses, but no diagnosis yet. I can't go on a trampoline anymore. Even in my 20's, I would leak all my bladder content as I jumped. I always needed to wear a thick menstrual pad.

Often, as I can attest, a deep fascia neck massage made with great force can exacerbate pain and all systemic symptoms of EDS.

That's what happened a few days ago: I vigorously massaged my neck and pectorals many times during the day because I felt tension. That night was the night I couldn't sleep due to back pain radiating up to my neck.

So the above is a standard questionnaire to orient people in their conjunctive tissue state of health, but it also serves as an initial questionnaire for anyone suspecting of having EDS.

I answered yes to many things in there. What should I do with this info?
Does this mean I should give a try to the carnivore diet? It's true that I always feel much better and energised after eating meat...

 

[Gaby]

I answered yes to many things in there. What should I do with this info?
Does this mean I should give a try to the carnivore diet? It's true that I always feel much better and energised after eating meat...

Remember that there are many varieties of connective tissue anomalies, as there are possible genetic recombinations of anomalies coding at this level. The spectrum of disorders for certain people do tend to fall under a certain syndrome. You can find out from your local society for Ehler Danlos and/or Hypermobility Spectrum Disorder if there's a contributing practitioner in your local area receiving patients. That is, if you find yourself in such a state that you need professional help. As per official guidelines, a diet low in FODMAPS is already the way to go. This is basically like a "carnivore diet for dummies" because it includes other non-carnivore foods that are generally very easy to digest for people with conjunctive tissue disorders :

FODMAP 101

Small carbohydrates called FODMAP are responsible for all sorts of digestive concerns. A low FODMAP diet can help reverse them.

www.healthline.com

Knowledge protects, IF applied. If you know the carnivore diet is good for you, and you don't do it... No amount of knowing will help you unless applied.

 

[meadow_wind]

If you know the carnivore diet is good for you, and you don't do it... No amount of knowing will help you unless applied.

Thanks for the info!
I don't know if it's good for me yet. I never tried it nor paid much attention to it because I thought it was helpful only for extreme cases, such as autoimmune diseases, which I don't have. But this recent info makes me think twice...

I'm still at the stage of trying to implement the basic Metal / Candida Detox plan from Laura, but I'm struggling to implement it firmly. This said, a Low FODMAP diet would be more realistic considering my tendency to cheat all the time.

The next step I need to investigate is whether there are psychological or emotional aspects to the way I relate to food that would explain why I can't stop cheating. Laura's words keep echoing in my mind from the last session: "It's not worth it. Being in pain for days just for a bite of tasty food."