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Another question on hypermobility  RSS feed

 
Posts: 35
Location: Atlanta, GA
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I read Nicole's thread with interest, as I've been diagnosed with Marfans and have been struggling with joints dislocating.  I'm about to start physical therapy to try to strengthen the muscles around my elbow, as it's spent more time dislocated than properly located over the past year.  Are there any herbs I could research that might help support my body during the process?  
 
steward
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I'm also interested in support for people with hypermobility.  I don't have Marfan's, I'm on the Ehler Danlos spectrum but likely below the threshold for formal diagnosis.
 
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Location: Pleasant Hill, Oregon
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I am going to answer this in a little bit different way than you might be expecting. I always  want to get to the root of the problem. Another way to imagine it is to fix things upstream rather than downstream. So, we may not be able to change the genetic factor (at this current time.), but we might be able to correct what that genetic variant has done. I do want to make sure you know that I have very little knowledge of Marfans and it has been many years since I worked with someone with Marfans. Back then I had no idea what to do for them. Now I think I have an idea that could be helpful. You will need to discuss this with your general practitioner though. We have to get some history first here.

Marfans is a disorder of the connective tissue, there is a variant of the FBN1 gene that provides instructions to make fibrilin-1 which is needed to give strength and flexibility to connective tissue. It also is needed to bind to growth factors and release them for repair of tissues and organs. In Marfans, the FBN1 has a variant that reduces the amount of functional fibrillin-1 that is available to make microbibrils. As a result, microfibrils are not able to bind to growth factors, so excess growth factors are available and elasticity in many tissues is decreased, leading to overgrowth and instability of tissues in Marfan syndrome.

There is specifically an excess of TGF-B 1 (transforming growth factor-beta). TGF-B 1 is also in excess in people who are sensitive to mycotoxins, so years ago I researched which herbs would lower TGF-B 1 – or perhaps I should say which herbs will normalize it as sometimes the same herb will increase and lower TGF-B 1 to a normal amount.

So, although I don’t have an experience in treating Marfans, I would suggest you discuss the idea with your physician of using herbs/supplements to lower TGF-B1.  

The herbs I am mentioning here specifically lower TGF-beta 1.Herbs and nutritional supplements that have been found to lower TGF-B might be useful. The drug Losartan which lowers TGF-beta 1 has been used in research to help in Marfans specifically because it lowers TGF-beta 1. I would mention that Losartan is acting on multiple mechanistic pathways besides TGF-B too. Losartan is also used by some physicians as part of the treatment for people sensitive to mold as well as an antihypertensive. (Those who do not use herbs/nutrition.)

I would also provide basic building blocks in the diet for healthy connective tissue to be made.  These could include: Bone broth, grass fed, organic gelatin.

An individual could also take flavonoids, b vits, glutamine, magnesium, vit. K, sulfate (magnesium and sulfate can be obtained by epsom salt baths - some people have trouble changing sulfur or sulites into sulfate that is needed to make collagen), zinc, copper, and vitamin C  -  in your diet or as a multivitamin/mineral to help you  make new connective tissue.


Some natural items that have been shown to decrease high TGF beta-1 are below. You can find many more on my website.  http://www.herbaltransitions.com/TreatmentOfCIRS.html

Resveratrol – Ecological Formulations 100 mg from Polygonum cuspidatum root. 1 capsule BID - (Resveratrol is high in red grapes with seeds and skin as well as the herb Polygonum cuspidatum - Japanese Knotweed)

Barley extract (procyanidin B-3 in it) and apples: Procyanidin oligomers in apples and barley counteract TGF-beta1

Panax ginseng

Rhodiola rosea have been shown to lower TGF beta-1.

Ginkgo 24% also inhibits TGF beta-1: This herb has contraindications, so if you do not know them, learn them before using it.

Boswellia serrrata - Has been shown to down-regulate TGF beta-1.

Salvia miltiorrhiza - This is especially helpful if the person also have a kidney transplant or they have CHF as this herb will additionally help in these areas. People with organ transplants have high TGF beta-1 due to medications they take also. They are more complicated to work with.

Taurine: 500mg -2 grams per day. Take in 2-3 doses. - Thorne has a 500 mg Taurine product. The amino acid that is so important for bile conjugation (glycine too) has been shown in research to lower TGF b-1.

Green tea polyphenols - Take 500 mg BID or two cups of strong green tea per day. epigallocatechin gallate (Green tea catechins):(EGCG), a major (and the most active) component of green tea extracts inhibits TGF-beta.

Genistein (high in beans): Lots of yummy beans to eat. Always pre-soak them. Red clover tea is nice also.

(S)-[6]-Gingerol has been shown to lower TGF beta-1. This is found in Zingiber officinalis - Ginger.


Vitamin D & Sunshine: Vit D decreases levels of TGF-β and NF-kappaB. Monitor levels fof vitamin D for correct dosage.

Research shows safflower and canola oil increase TGF b-1   I mention this as these horrible oils are in many prepared foods.

 
Kirsten Simmons
Posts: 35
Location: Atlanta, GA
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Thank you so much for such a detailed answer!  I actually take a low dose of losartan, and over the past several years it has reduced the width of my aorta to normal range.  I'm a farmer, so I have a pretty decent diet and get plenty of sunshine, but I can definitely boost my consumption of bone broth.  I'll do some research on the herbs you've suggested, talk to my doctor and go from there.  
 
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