David, I was wondering if you have any insights you can share into possible therapeutics and useful supplements for Ehlers Danlos Syndrome. I am aware that there are many subtypes of this genetic disorder, but there is a seemingly black hole concerning herbals used to support this connective tissue disease, regardless of the subtype. In knowing several patients with Ehlers Danlos, they all seem to have one thing in common...gut dysfunction/food sensitivities/allergies and absorption issues. I know this is a broad question, but I would appreciate any knowledge you might have obtained over the years by treating individuals, and any resources that may be helpful for me. Thank you!

There are several challenges to answering your question, as an herbalist I treat people, not diseases, so if i treat 10 people with Ehlers Danlos, they will have 10 very different protocols. All of these people will have connective tissue issues - skin, joints, muscle/tendons, so I support those areas with herbs such as Amla fruit, Blueberry, Teasel root, Solomons Seal, Achyranthes, Horsetail, Rose Hips, Hawthorn, etc. Which ones I use depends on the specifics of the case and the persons energetics. Neuropathy is also common and there I might use St John’s wort, Prickly Ash, Ligusticum root, Alpha-Lipoid acid, Sweet Mellow, etc, As you mention many people (but not all) have GI issues and you need to look at gut dysbiosis, probiotics, bitters, diet, etc. Some people have diarrhea (Amla, Rose Hips, Yarrow, Witch Hazel, Kudzu), others constipation (Butternut bark, Cassia tora seed, Dandelion root, Artichoke leaf) , GI pain (Wild Yam, Cyperus, Catnip, Chamomile). I cannot think of any good resources, but if I find any I will let you know.

David, Thank you for your insight. I am finding that is it quite challenging for me to adequately articulate question, personally knowing the specifics of the case, without sending you a novel! I thoroughly understand that people need to be treated and not conditions, as I am one of "those" patients who became extremely frustrated at practitioners who tried to fit me into a one size fits all kind of medicine. It's a terrible way to practice any kind of medicine. Rebekah is a fiery individual with a definite zest for life. She describes herself as a "balls to the wall" type of individual. Chats easily and voice sounds positive. She is trim and fit, and eats well, although she doesn't consume much fat. Red meat is hard to digest for her. Mainly eats fish. She faces challenges head on, yet it is my opinion that she is harboring some fear regarding her fate. Her father had breast cancer, a double mastectomy, and ultimately passed away from bone cancer. In addition to EDS, she has had a double mastectomy, lymph node removal, and a hysterectomy and ovarian removal due to BRACA gene. Obviously inherited. Symptoms involve wandering musculoskeletal pain, gut issues, "not feeling good", fatigue, fullness in liver area, left arm edema, interrupted sleep and menopausal symptoms. All symptoms have been exacerbated post hysterectomy. Especially sleep. Bloodwork is indicating hypochlorhydria, vitamin B12 and folate deficiency, borderline low parathyroid levels, and very high Alkaline Phosphatase levels. Lipid panel normal, thyroid function normal. Doctors then ran additional ALP fraction tests which indicate low liver fraction, normal intestinal fraction, but very high bone fraction levels. She is cranking out osteoblasts. She's very concerned this is leading to bone cancer. I'm hoping this is a temporary reaction to her body adjusting to severe hormone changes. (Is this a possibility?) Bone scans remain clear. Live blood analysis indicates prevalent blood cell rouleaux. To date, I have recommended Digestive Bitters before meals, and a detox tea with added lymphatic herbs. (Nettle, Dandelion root and leaf, Calendula, Chickweed, Red Clover blossom, Cleavers, Burdock, Schisandra, Cinnamon, Licorice, and Ginger.) She reacts negatively to Milk Thistle. I have also suggested a nourishing tea ( Oatstraw, Nettle, Alfalfa, peppermint, red raspberry, red clover blossom and horsetail). She is doing well on the teas, which she is excited about as she has negative reactions to a lot of different things given to her in the past. I have also suggested magnesium (400mg bisglycinate), methylated B12 and methylated folate, D3 and K2, grass fed butter each day, alpha lipoic acid, and as much vitamin C as she can tolerate (which really does help her). Whew! Now for the final question...am I missing something BIG? HaHa! I just have to chuckle sometimes. Honestly, I feel like I don't know what I am doing most of the time, because I don't! I told my husband last week that my only goal moving forward is to NOT ask you a question where I get the reply "We treat individuals, not diseases", and look what happened;) I appreciate your patience. Thank you.

I suspect no matter how long someone does this (for me 45 years) , in complicated cases you always wonder if you are seeing the whole picture and if you have missed something. The answer is probably yes, but since few of us rarely sees the whole picture and none of us knows everything (or even a fraction of everything), we do the best with what we have and see how the person responds to our treatment and adjust as needed. Dr Ng one of my early teachers would say” if your treatment works your diagnosis was correct, if it doesn’t your diagnosis was wrong”. This is a complicated case and I do not do case histories on ATP because there is no way I can get all the information I need and I simply do not have the time. Still I will try to make a few helpful suggestions, we know Rebekah has a genetic disorder, and I would not be surprised if she also has an MTHFR gene snip or two that makes her so sensitive to so many things. In addition the removal of breast, ovary and uterus means she is having a very quick and more complete hormonal change/menopause than would occur naturally. This can cause all sorts of issues including elevated ALP (Bone) isoenzyme Aging Clin Exp Res . 2015 Aug;27(4):413-8. doi: 10.1007/s40520-014-0296-x. Epub 2014 Dec 23. Elevation of serum alkaline phosphatase (ALP) level in postmenopausal women is caused by high bone turnover Keijiro Mukaiyama 1, Mikio Kamimura, Shigeharu Uchiyama, Shota Ikegami, Yukio Nakamura, Hiroyuki Kato Because she is so sensitive, I do not not know what will work and what she will have a negative reaction to. In cases like this I tend to use simple formulas, with small doses and work slowly to find what she can tolerate or not. Some herbs that may be of use include Vitex, Licorice (depending on BP), White Peony, Shatavari, Amla, GOTU KOLA (!), Turmeric. The wandering pain seems like a liver wind pattern (can be associated with surgical menopause) and herbs that may be helpful include Suan Zao Ren (also may help her sleep issues) , Skullcap, or White Peony. I think you are on the right track with bitters to enhance digestion and absorption, the other tea, I would mention that it is rare to find decent dried Cleavers or Chickweed in the marketplace.. Unless you are growing or wildcrafting them yourself, most of what is available is not worth using. I see you are supplementing Vitamin D, be sure to check her serum levels, I agree with the methylated B vitamins and magnesium. Lastly for post-surgical lymphedema I use fresh tinctures of Self Heal, Sweet Melilot and Cleavers, with tincture of Horse Chestnut. I do not know if she can tolerate these herbs or tinctures. I hope this is of some help. blessings, david

David, You are correct regarding the MTHFR snip. She is heterozygous for C677. She also has some other SNP's affecting Phase 2 liver detoxification, and one homozygous SNP that affects liver detoxification in all phases. In her case, she can generally initially tolerate a therapeutic, but then it turns south for her...rotating therapies seems to work the best depending on what is going on at the time. I appreciated Andrew saying last night that we need to treat what we see at the time. That cleared a lot of "stuff" out of my mind, as I tend to overthink sometimes. It's my dominant "earth" element personality (mind/thinking) Clearly out of balance. I told one of my mentors that I didn't know how in the world I would be of any good to anyone if I had to think so long about everything! I am fortunate to have such wonderful friends, who are allowing me to "guinea pig" them! Ironically, they are all complicated cases. Regarding Vitamin D. When she doesn't supplement, her levels are low. When she does supplement, she has to be careful about the dosage, as her levels will rise rather quickly. Her blood pressure was sporadic and high post hysterectomy but has stabilized. On a side note, one supplement that really bothers her is zinc. Zinc has so much effect on the immune system, and with her history of cancer, one would think that she would need to supplement. Her diet contains very little. Zinc gives her horrible stomach aches. I did a liquid zinc taste test. It took her 10 seconds or so to taste the zinc, and then it turned into an extraordinarily strong taste. I am so fortunate to live where I do as I have access to a wonderful herbal shop in Chandler, AZ called Desert Sage. While chatting one day with one of owners, (I loiter quite frequently in their store), I mentioned I was attending your herbal studies. She says to me, "Oh yeah! I know David's wife!" Her name is Vicki Greener, and her daughter, Brittney Sounart is an herbalist and they co-own and run the business together. I am able to purchase just about anything I want to recommend or try. What a blessing! I'll make sure I ask where she gets her Chickweed and Cleavers;) One final question regarding Rebekah...in addition to what I am already attempting to support, I need to figure out how to additionally support her system in order to normalize her bone turnover. With her history of cancer and immune dysfunction, her spleen/ liver qi deficiency, and the fact that mushrooms act on the marrow level and are chocked full of minerals and nutrients like zinc, do you think that adding in Seven Precious Mushrooms would be beneficial for Rebekah? Thank you for your time and suggestions:) Have a wonderful rest of your week. Jami

I don’t think the 7 precious mushrooms is the best fit for her, it would be ok. I wonder if something like Nettles powder and Amla might help with her bone issue. As for zinc eat zinc rich foods like pumpkin seeds.

David, Thank you:) Jami