Tag: herbalist

For My 30th Birthday, I Was Going to Get a Neck Tattoo—Instead I Found Out I Have Ehlers-Danlos Syndrome

by Jenn

Thirteen years after my misdiagnosed autoimmune disorder, 18 years after having debilitating painful periods almost every month, and almost nine years after going gluten-free and feeling healthy, here I am with a potential new diagnosis.

In hindsight, it all makes perfect sense. Ehlers-Danlos and mast cell activation syndrome. I have many of the symptoms of each. Yet, no one—outside of my integrative health doctor a few months ago—told me that I had these disorders.

Yet I know that at least one of my doctors knew I had Ehlers-Danlos. She had me perform the maneuvers of the Beighton score during my appointment at the age of 21. At the time, I didn’t know that’s what she was asking me to do; all I knew was that she was surprised by my hypermobility. She never told me I had the disorder.

(I recently attempted to find this doctor—who told me I would be on chemotherapy for the rest of my life to manage my autoimmune disorder, and who I only saw once—to get my records only to find that the practice is closed and I cannot locate her. Very frustrating. She came highly recommended to me from some acquaintances who had lupus—she turned out to be a total joke. She knew I had Ehlers-Danlos, probably knew about the connection between Ehlers-Danlos and mast cell activation syndrome, and probably could have come to the conclusion that my “autoimmune disease” was a result of my body overreacting to foods that it didn’t like.) Anyway!

So how did I get from there to HERE?

You can read the full story here, but the short version is this: I walked out of that doctor’s office feeling hopeless yet determine that this was not going to be my life. I found an herbalist who helped me figure out that gluten was causing all my symptoms. I stopped eating gluten and have been fine for the past nine years without any medication.

And yet.

While I’m currently healthier than I’ve ever been in my whole life, there were still some nagging issues that I couldn’t quite figure out.

  • The insanely painful periods (which have improved SO MUCH with help from my herbalists, but still sometimes leave me in bed all day)
  • My unexplained anxiety and skin picking disorder
  • The bad reaction I’d often have to alcohol (I’ve since quit drinking for good)
  • Having brain fog after eating
  • My orthostatic hypotension and low blood pressure
  • Hives after eating food (never quite figured out which foods caused this)
  • Poor wound healing, scars, and dry skin
  • The fact that I feel cold almost all the time

I couldn’t put my finger on it, and often times I’d forget that many of these symptoms weren’t normal because I’d been experiencing them forever. I chalked it up to genetics: my dad has insomnia and dry skin, my mom and brother have some form of skin picking disorder (which is actually a mild form of OCD).

Brain fog and hives are classic symptoms of a food intolerance, but I couldn’t figure out what I was eating that was causing these symptoms. I already don’t eat gluten, dairy, alcohol, and genetically modified food. I also do my best to avoid refined sugars (although, of course, I do indulge once in a while).

So what was going on?

I blamed it on my parents: I got screwed with bad genes, blah blah blah. But that didn’t explain my low blood pressure (high blood pressure runs on both sides of my family), and it didn’t explain my bad periods. There were gaps that I didn’t understand.

And then.

I needed to talk to my integrative health doctor to get some paperwork for my job in DC. I tried to get reception to send it, but they said that I had to schedule an appointment. Boo. So I did, even though I didn’t really feel that I needed to see him. It was COVID times, so I had a phone appointment with him (I love my integrative health doctor, I just hate doctors in general, so I always have an attitude when talking to him).

We spoke about some of my symptoms and he suddenly but strongly suggested that I had Ehlers-Danlos Syndrome and mast cell activation syndrome after asking me some questions. After asking me to come in for bloodwork, we got off the phone.

At first, I didn’t think much of his suggestions, but then, I felt upset. Here I am with yet another disorder—ahem, disorders—at age 30.

So I started researching and read the material my doctor sent me. I was convinced that I had this. I had so many of the symptoms. Not only could I perform several of the actions on the Beighton score, but I also had Gorlin sign—the ability to touch the tip of my nose with my tongue—something I’d always been able to do. Only 10% of people can do this, but 50% of people with Ehlers-Danlos can.

I’m still learning about Ehlers-Danlos and mast cell activation syndrome, but I can’t help but feel that this is a huge missing link in the big picture of my health—a merging of my misdiagnosis and my current symptoms. I also found some tentative research about the role of mast cells in dermatomyositis, and how mast cells could not only be “the first cells” to become activated in dermatomyositis, but also how maybe treating mast cell activation could be a missing link for those with dermatomyositis.

I’m currently working my herbalist to address many of my mast cell related symptoms and am excited to see what the future holds for my health! And the neck tattoo? Don’t worry, it’s on the list for next year 🙂

5 Ways Herbalists Have Immensely Helped Me

by Jenn

Many of you know the story of how a crazy autoimmune disease I was diagnosed with was just the result of a gluten intolerance. I found out this monumental piece of information with the help of an herbalist when I was 21.

No one I knew had ever seen an herbalist and I’m not sure why I felt driven to find one. Maybe it was because I was facing a life of chemo. Maybe because I was in chronic pain. Or maybe it was just something bigger telling me that this wasn’t the end of my journey.

I’ve worked with two herbalists since the one I originally saw moved away. Here’s how these women have immensely helped me improve my health and quality of life with some simple suggestions!

Note: I am not a doctor. Please take the following information from my experience only. This information is not intended to provide medical guidance.

Discovering the Cause of My Autoimmune Disease (Hint: It was Gluten)

When I was 21, I was told by a well-known doctor in a city near me that I would most likely be on chemotherapy for the rest of my life. Although I felt like I wanted to give up hope at that time, I ended up pursuing another option—finding a natural treatment for my autoimmune disease, dermatomyositis.

Through an herb shop about an hour away from me, I located an herbalist who agreed to see me. During my second visit with her, she told me that she thought gluten was causing my illness. I thought she was crazy. I hardly knew what gluten was.

She turned out to be right. A protein named gluten was causing my immune system to attack all my muscles and my skin. Within a week of going gluten-free, all my autoimmune symptoms disappeared and I was able to stop taking all of my medication. That was seven years ago.

The fact that I spent over four years on detrimental pharmaceutical medications, gained 30 pounds, and felt sick all the time was all undone by a woman who knew that food could make us sick. Her simple but profound knowledge dramatically changed my life for the better.

Without discovering that root cause of my illness, I would likely still be on all those medications today and still feel terrible. My quality of life would have been compromised all because doctors are still grasping the idea that food can cause such severe illnesses.

Saying Goodbye to My Crazy-Bad Menstrual Cramps

I have more or less always had bad menstrual cramps. They aren’t consistent, though. Some months are absolutely terrible. Other months aren’t bad at all. Trust me, I’ve yet to find a pattern (although I have a few theories after trying to figure it out for the last 16 years).

When I began working with an herbalist to learn more about the Fertility Awareness Method, we also worked on addressing the cause of my crazy bad cramps. The solutions she suggested have helped me to remain mostly pain-free during my period today.

Through drinking a ginger infusion, taking magnesium glycinate, and taking omega-3 supplements, my menstrual cramps have majorly improved. In the last seven months, I have only had one episode of bad pain thanks to her suggestions.

Since, unfortunately, I’ll be having a period for a long time, her help has enabled me to not feel like I want to die just because I am a woman.

Helping Me Realize Fats Are Not Bad

I have yet to have an herbalist not recommend fat to me (except, of course, the horrible kinds like trans fats).

Saturated fat such as animal fat and coconut oil as well as monounsaturated and polyunsaturated fats such as avocados and olive oil are all part of a healthy body. Yes, people will argue against this. I’m not getting involved in that discussion here. I’m here to say that my herbalists helped me realize that fats are not bad—in fact, they’re pretty essential.

Through their help, I’ve been getting more fats from all types of sources (except for Twinkies) and have more energy and better skin!

Implementing a Natural Method of Birth Control

The Fertility Awareness Method has been an enriching experience for me and my husband. I would have never been able to learn the method as intimately as I have without my herbalist.

The method enables my husband and I to forgo conventional methods of birth control, many of them toxic, and simply track my cycle via taking my basal body temperature (BBT) and monitoring my cervical fluid to know when I’m fertile and avoid intercourse on those days.

Implementing a natural method of birth control has allowed me to honor my body and also choose a conscious form of contraception that doesn’t rely on toxic pharmaceuticals. This is a huge benefit for someone who doesn’t want kids (cough, that’s me).

Allowing Me to Realize Food Is Medicine

Before I began working with herbalists, I didn’t understand how much food impacts our health. Food is everything to our health. What you put in your body, the supplements you take, whether you choose to smoke and drink, all have huge effects on our systems.

Perhaps this is the most important gift herbalists have given me, being able to realize that I have so many chances to put either medicine or poison into my body. By choosing the foods that I feel are best for me, I choose medicine (by medicine obviously meaning plants and grass-fed, free-range meat).

Whether it’s probiotics or herbs, food and supplements are a powerful form of medicine, one that I feel grateful to have tapped into with the help of a professional.

Working with an Herbalist

I would absolutely recommend working with an herbalist if you’re facing any health issues that do not yet have an identified root cause. In many instances, conventional doctors are only trained to treat our symptoms, not the cause of our illnesses.

Even for people who believe they have discovered the root cause of their illness or symptoms, an herbalist can help you better manage your health. I’m so grateful to have worked with my herbalists to be as healthy as I am today!