Hypermobility syndrome, Symptom relieve with supplements

Hypermobility EDS Symptom relieve

EDS; Ehlers Danlos Syndrome, Hypermobility Syndrome, Dysautonomia, POTS; postural orthostatic tachycardia syndrome, Histamine Intolerance, MCAS; mast cell activation Syndrome, all connected to MTHFR problems^1,2

Treating symptoms and getting better

Imagine: mostly pain free, no more bruises, no more bladder issues, no more dysautonomia, no more anxiety, having energy, you name it!

If you have an Ehlers Danlos syndrome or other hypermobility syndrome, there are things you can do. I have researched and have been trying for 2 years now and am mostly symptom free. I am only still hypermobile.If you should not achieve this, you maybe at least achieve a somewhat better quality of life.

However, when I go through my ankle again and fall, I can start again, but because I now know how, I can mostly manage this back in about one-two weeks.

I will tell my story:

I am 52, menopausal and have hEDS, histamine intolerance, MCAS and dysautonomia.

I am an optometrist and live in Switzerland. I have had one too many bad experience with conventional medicine, so I decided to take matters in my own hand and research and try for myself.

2022 I had a big crisis which I will describe below. Since then I have been puzling and researching to find my root cause(s). I have several EDS genes and other SNP‘s related to hypermobility. A SNP is a Single Nucleotide Polymorphism of a gene. I found thi out by taking the most simple gene test and uploading this in genetic genie: https://geneticgenie.org

I manage most of my symptoms with supplements, which I order at Iherb. I will explain in more detail later.

Short version:

Most of the time I am doing pretty well, I walk 3 km, 90 height meters 1-2 times a day and am mostly pain free. It took me years to get this far, in the past I was not able to walk 30 yards and had chronic pains, for which I have used gabapentin, Lyrica and I still use naproxen and Spirocort, when I have pain.

I have been having problems with sleep all my live, have problems with temperature regulation, I only started sweating when I got to menopause. I had to go to the toilet all the time, had several allergies and sensitivities, rashes, nasal congestion etc.

2022 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 very 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 blood vessel relaxants (vasodilator), which made my heart need to work even harder. It was an extreme stress reaction. Everything was checked, no heart attack, but also nothing to help me. I tried beta blockers (metoprolol) for the stress, this did not improve anything, but got nightmares from it, this worsened my anxiety.

I then did online research to what is depleted by stress and what I could be missing due to my lifestyle habits.https://blog.bioticsresearch.com/nutrients-depleted-when-you-are-stressed-and-what-to-do-about-it

I also tried to find a blood vessel stabilizer. I started taking Daflon; bioflavonoids with hesperidin. This got rid of my bruises.😀 I also started taking valerian and this reduced my anxiety, I even do not bite nails anymore. You cannot overdose valerian root. I took 500-1000 mg at bedtime.

I then found website from Dr Becky Campbell,https://drbeckycampbell.comwho also has hypermobile Ehlers Danlos and signed up for her emails. I then got an invitation from her and did the Mast Cell Activation Summithttps://mastcell360.com/mastcell-reboot/and here I found Trudy Scott, nutritional therapist, and bought her book. She works with symptom questionnaires.https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/

I kept a diary and only made one change at the time. I was very deficient in zinc, magnesium, B vitamins, Omega 3 and vitamin D, also due to lifestyle habits; I didn‘t eat fruits and fatty fish and drink alcohol

To see what is in which food I use this website:https://nutritionsource.hsph.harvard.edu/vitamin-b6/, this website also explains which functions these vitamin and minerals have in the body.

I then tried GABA; Gamma-Aminobutyric acid, this is a calming amino acid which works as a neurotransmitter in the body and this greatly relaxed my bladder muscle and made me relax a bit more. Trudy Scott is specialized in this, see her book/website for dosage.

I also started with zinc, which is crucial for the immune system and depletes with every inflammation and I was pretty much inflamed all the time, one way or another. For every deficiency one needs very high dosages for a longer time.

I also had extreme problems with the heat over summer and this is one of the items on the serotonin list from Trudy Scott. I highly recommend the book

Serotonin is a neurotransmitter which also controls blood vesselshttps://pubmed.ncbi.nlm.nih.gov/2939211/and gut movement. I also had extreme ruminating thoughts. This is also associated with low serotonin.

I do walk a lot, which also should produce serotonin, but apparently it is not enough. I started taking tryptophan; a amino acid building block for serotonin, but this did not work and made my rosacea 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 apparently does not goes in the serotonin pathway without activated vitamin B9 this is 5-MTHF, or methylfolate.

Dr Chambers also found an association between EDS MTHFR POTS etc.

https://www.researchgate.net/publication/371956371_MTHFR_and_LCCFSPOTSMCASSIBOEDS

After that I also (accidentally) found out, that I do not process vitamin B6 very well, or not enough and now I take activated vitamin B6, called P5P or PLP. Research also showed, that inactivated vitamin B6 can block receptors and do nothing. https://pubmed.ncbi.nlm.nih.gov/28716455/ This is why people like us should always use the activated B6.

I found out I am homozygote for the NBPF3 SNP rs 4654748, which reduces P5P: https://www.geneticlifehacks.com/genetic-variants-that-decrease-vitamin-b6/, https:// pmc.ncbi.nlm.nih.gov/articles/PMC2773275/

I also have a Molybdenum cofactor deficiency SNP which, probably in combination with all these other SNP‘s deactivates my P5P all the time.

P5P levels in the blood are lower for man than for women and when one gets older it also gets lower.Plasma pyridoxal 5′-phosphate in the US population: the National Health and Nutrition Examination Survey, 2003–2004 - ScienceDirect

P5P and zinc are also depleted by inflammation.https://www.mdpi.com/2072-6643/13/9/3229,https://pmc.ncbi.nlm.nih.gov/articles/PMC3374666/, see the pyroluria question list from Trudy Scott: https://www.everywomanover29.com/blog/pyroluria-questionnaire-from-the-antianxiety-food-solution/

With the P5P things got much better😀 I sleep much better, have a better mood, can tolerate heat better. At the moment I take a capsule every time I feel palpitations or notice, that my temperature regulation is not working well, when I wake up in the night and with bad dreams. With the P5P, my body odour also changes and the insects don not like my taste anymore.

I take the 5-MTHF/methylfolate, when I notice that I am getting more body fluids / slime in my throat. With this I can take a high dose and spread it out over time. I also use aminoacid betaine/ trimethylglycine (TMG) for this, this stimulates the alternative pathway, and goes faster.

Off course, these cofactors 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 threw toxic people out of my live. I chose for myself and my own health and have set firm boundaries.

I think that, because of our extremely flexible blood vessels, we need a lot of serotonin and therefore also a lot of these co-factors i.e. high dosage. Somewhere we decompensate and things get worse and worse if we do not supplement and then we are so depleted, that high dose is necessary.

Collagen reduces serotonin, thus serotonin may also be low due to this, because with every injury, we produce collagen.

Vitamin D shifts serotonin 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

My sleep is improving, I have been a severe insomniac all of my live. (melatonin production also needs 5-MTHF). My dysautonomia is pretty much over, I am much less frequently urinating/drinking (this is kidney/renal blood pressure control) dreams are getting better, I am less clumsy. My blood pressure is in the green area now.

I noted everything in a diary since starting supplements last summer.

I think my root causes are the MTHFR gene and having enough P5P. It gets deactivated all the time. I am mostly stress free now.

Caution though; before supplementing with 5-MTHF/ methyl-folate first start with B12, because you will be depleted in this too, I made the mistake not doing this and depleted my B12 even further; ending up with peripheral neuropathy, which went away after 2 months of taking lozenges under the tongue with methyl-cobalamin and adenosyl-cobal

Both vitamin B12 and B6 are also needed to make red blood cells. These live for about 3-4 months.

I also found this website, also seeing a cause in the serotonin pathway and MTHFR :https://www.mthfrheds.com/

Along with this I found out I can greatly reduce my rosacea (I need to avoid vitamin B3 in the form of niacin, niacinamide is OK) and histamine 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 apply it in a meal.

https://www.factvsfitness.com/blogs/news/dao-deficiency-increase-dao-enzyme

With now much lower concentrations of histamine in the body, I did not react to insect sting that bad anymore, at least not systemically.

Stress; physical or psychological: adrenalin depletes magnesium, SAMe and vitamin B1, when something stresses my body, my adrenalin surges and I need to supplement extra with those to replenish this. At such times I could smell the Vanilla mandelic acid in my urine which is a breakdown product of adrenalin. I already took vitamin B1, called thiamine, high dose for a long time because of the alcohol. I take 500 mg from Nutricost now. I also used the natural sources, but those are tablets.

I eventually managed to get a circadian rhythm back with liquorice tea in the morning, this reduces the enzyme which breaks down cortisol. I am permanently low with cortisol. When I have inflammation I do need to take cortisol tablets.

For anyone else trying to find and manage their root cause, I also highly recommend the book Dirty genes, website and Youtube movies from Dr Ben Lynch: https://mthfr.net

For MCAS and histamine intolerance; Look especially at the histamine workbook which one can download from this website. I use Dr Lynch‘ pathway planner to look which enzymes use which cofactors.

Conclusion is, that my metabolism has been out of whack my whole live with far reaching consequences and I am finally catching up.

I am now fine tuning more and more and still learning each day.

As to the how I would advise to start:

Search for MTHFR or methylation on Youtube, you will find a wealth of information! Start learning.

Speak with your doctor first, otherwise if you have a doctor, who is willing to help you, testing can help if done in the right way. You might want to look for a functional medicine doctor or naturopathic doctor for this.

My protocol

Start with, in this order:

Vitamin B12 (you cannot overdose this) I like the KAL methylcobalamin and adenosylcobalamin. Symptoms of deficiency are burning and tingling extremities, fatigue, pain stings in the lower legs or maybe arms. This is often masked because of the B9 deficiency. You need B12 to make stomach acid, so you can digest well, but you also need intrinsic factor in your stomach to absorb B12 and you only have a small amount of that. To circumvent this you take a lozenge under the tongue, this way you can absorb much more, much faster.
A good multivitamin free from copper and folic acid. I personally like the Kirkman multivitamin and mineral for adults. See how you react, try taking 2 capsules a day initially.
Vitamin C and Bioflavonoids. I personally like the 1000 mg Natures way vitamin C with bioflavonoids, I take them twice a day. I have also used the Citrus bioflavonoids with hesperidin from natural Factors, these are without vitamin C and resemble the Daflon. This also helps with hemorrhoids.
Vitamin D3, in the beginning you will need up to 10000 IU per day. I use NOW 5000 IU soft gels. You can also add in a version with vitamin K2 added to it, which aids with bone health. When I go under 5000 IU, I get problems again in the form of muscle stiffness around my hips and it also negatively interferes with my sleep. Vitamin D also aids with upregulating potassium levels.
Omega 3 fish oil DHA/EPA you can dose up to 4 grams a day. I have used the Now brand 1000 mg and the California gold, I find them equal. If I take less than one a day, my sleep gets off again
Vitamin B6 activated version; called P5P, PLP or co-enzymated B6. I like the NOW P5P 50, it has a little magnesium added in. I also like the nutricost 50 mg. I also used source natural co-enzymated B6, but those are tablets. Your belly should be ‚gurgling‘. But maybe you might start with 25 mg doses. Also see Trudy Scotts book for this. At the moment I take a capsule every time I feel palpitations or notice, that my temperature regulation is not working well and when I wake up in the night and with bad dreams. With the P5P, my body odour also changes and the insects don not like my taste anymore. My experience is; as long as you have any kind of pain or inflammation you will need a lot. It also is needed for making red blood cells.
Zinc also see Trudy Scotts book for this. I now use the Natures way Lozenges. Stop if they start tasting bad, or if you get nauseous from them. You can dose up to about 90 mg per day, but this is also in the multivitamin. Zink might not go well with coffee. Copper and zinc should also be in balance, but because zinc is depleted all the time by inflammation,https://pmc.ncbi.nlm.nih.gov/articles/PMC5490603/, you probably have too much copper; copper can generate inflammation and pain. If I start noticing, that I am not walking straight anymore, then I take only one Copper 2 mg.
Magnesium, I like the Magnesium-glycinate from NOW, I take about 3 daily when I am ‚off‘ on top of what is in the Multivitamin. Magnesium is tightly correlated to calcium. Magnesium is relaxing, calcium is excitatory. Symptoms are for example, that you get muscle twitches, especially in the night. If you take enough magnesium, your calcium will regulate itself.
olive oil, I take one tablespoon twice a day or take evening primrose oil. The olive oil enhances the DAO-enzyme and lowers histamine. together with the SAMe from methylation, which helps the HMNT enzyme, this cleared my histamine so much that I do not have an systemic bodily reaction to the insect bites anymore. If you have more problems with histamine; Seeking health www.seekinghealth.com has several products for this.
GABA, amino acid: Gamma-aminobutyric acid, also see Trudy Scott's website for this. This is her specialism. GABA relaxes and heals the gut and reduces anxiety. I only took this for a few months. If you get the ‘flush’ you have too much. You could start with GABA calm, this is 125 mg.
5-HTP, amino acid, I take 200 mg from NOW, I have also used the one from Fitness Foods, this one is only pure 5-HTP. Take one in the mid-afternoon and one before bed. This has Niacinamide in there and not niacin. Do not take this one timely together with P5P, then this causes diarrhea. I now only take one before bed
Do NOT eat or take anything with synthetic vitamin B9;folic acid in it! Do not eat foods fortified with this, because we cannot process this, it accumulates in the blood, causing pain and other issues.
Do NOT take collagen; it depletes serotonin.
too much sugar during the day also negatively impacts my sleep

Maybe you maybe needing extra iron, I have used the Thorne Ferrasorb, but stopped because I noticed my feces was getting black and I knew in the past I was not deficient.

If you have GERD, IBS, SIBO or leaky gut you also need to heal this. First detoxify gently and afterwards try to build up, maybe with pro-biotic. I personally did not have this problem but look at the following link

https://stuschaefer.com/resources/and the website of Dr Becky Campbell.

If you are too sensitive, you can open a capsule and take smaller amounts and spread over time.

If you would notice side effects from an amino acid, especially GABA can cause a niacin like ‚flushing‘, the vitamin C counteracts this. Do not take vitamin C together with an amino acid supplement.

After about 1-2 weeks I would add in a B-complex with the activated vitamins. I personally like the Codeage Methylfolate B-complex or the Thorne Methylguard+, but this one is more expensive. They contain vitamin B2, riboflavine, which is a cofactor for the MTHFR enzyme, and activates D3, vitamin B6/P5P, Folate as 5-MTHF, activated vitamin B12 and amino acid betaine/TMG.

I also take the B-Complex, when I notice that I am getting more body fluids / slime in my throat. It also helps with digestion. The B2 makes your urine yellow.

If you do not respond well and have problems with certain foods; problems can exist with sulphur containing foods, then also supplement with vitamin B1 and molybdenum first, before dosing up on methylation. See https://www.drlaurendeville.com/how-histamine-and-sulfur-are-related/andhttp://nutripath.com.au/wp-content/uploads/2016/09/NPATH-METHYLATION-MTHFR-Manual-v3.3.pdfpage 32: NOTE.

I have used the Codeage Molybdenum with charcoal, I liked this one, I now have the trace minerals from Life extension, which I take once every now and then. You can dose up to 500 mg a day (UL 2000 pd), but if you get gout like pain in your big toe, then you have enough. https://ods.od.nih.gov/factsheets/Molybdenum-Consumer/

Problems can also exist with high histamine foods. Follow a low histamine diet for a while. I still use Ceterizine 10 mg once a day.

When you respond well to this you can try to boost your metabolism more with methylating by taking Vitamin B9, activated version. I have tried Methylfolate/5-MTHF from Thornes, Seeking health, Protocol for life balance, Best naturals, for me I notice no difference between the brands.

For the methylfolate start low and titrate up to get your body to adjust. remember, there is already a little in the multivitamin and in the B-Complex.

Read about the ‚pulse method‘ of Dr Ben Lynch. I am now at a maintenance dose of 15 mg every other day. This is 15000 mcg and 25500 mcg DFE. DFE stands for daily folate equivalent. This can be confusing in dosages. I also am much less clumsy with this.

I also use an additional Betaine/TMG when I get teary eyes, nasal congestion etc. I use the source natural; there is however a bit calcium in there which is not good when I have a ‚flare up‘ of symptoms, I then use the TMG from Nutricost.

I order most of my supplements at Iherb. You can use code JXI9024 for 5% discount Some at Fitness foods, this is also because they deliver in Switzerland where I live.

All in all; because one will be so deficient, try to eat a great variety of organic whole foods, try to always eat a whole meal; carbs, protein and fruit or veggies and try to eat the most early in the day. Consider taking whey protein. Leave carbs out after 4 pm. Try to eat more, not less, eat smaller meals more frequently. This will stabilize blood sugar. source: https://stuschaefer.com

Last I started with butyrate, which is a natural pre-and postbiotic. It is also a natural GLP1 agonist like ozempic and stimulates the vagus nerve, which helps me relax and with sleep. https://www.sciencedirect.com/science/article/pii/S0925443922001478

I also started with seeking health probiotica which has bacteria, which can potetially produce all B vitamins and so hopefully resolve my problems further. I take a higher dose as prescribed, after seeing, that my 10 kilo dog gets twice the dose and I weigh 90 kilos. You have to be careful though if you are sensitive.

Nicolien Janssen-Otto, B.Optom.

Contact:

nicolien.janssen@bluewin.ch

https://www.facebook.com/profile.php?id=61568147846593

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

Links:

Hypermobility, EDS, dysautonomia

https://www.researchgate.net/publication/371956371_MTHFR_and_LCCFSPOTSMCASSIBOEDS

https://link.springer.com/article/10.1007/s13668-021-00373-1

Additional Links:

https://mthfrgenesupport.com/2018/07/5-common-mthfr-symptoms-and-how-to-manage-your-gene-mutation

vitamin B6

https://scielo.isciii.es/pdf/nh/v22n1/revision1.pdf

https://www.fxmedicine.com.au/blog-post/importance-pyridoxal-5-phosphate-p5p

https://www.mikronaehrstoffcoach.com/en/micronutrients/micronutrient.vitamin-b6.html

Hypermobility, EDS, dysautonomia

https://link.springer.com/article/10.1007/s13668-021-00373-1