My EDS Protocol

mortar_and_pestle_rxHaving Ehlers-Danlos Syndrome presents a wide variety of symptoms and health challenges. Sometimes you have no choice but to seek medical intervention for these issues, swallowing pills prescribed by your doctors. Often these pills come with myriad side effects that are sometimes worse than the symptoms they’re prescribed for, especially since we have delicate constitutions that tend to react poorly to such things, especially for those of us affected by a mast cell activation disorder. I am one of those zebras.

A few years ago, I began turning to “alternative medicine,” herbs, antioxidants, vitamins and minerals, desperate for relief that I was denied after years of trial and error with dozens of drugs. I simply can’t tolerate any of the drugs traditionally prescribed to spoonies and zebras such as Lyrica or Cymbalta, the effectiveness of amitryptiline was short lived, I have a severe allergy to codeine and the nausea and constipation caused by opiates is so unbearable that I’d rather just be in pain. But it didn’t take me long to realize that there are alternatives if you know where to look and how to do the research and that often pain relief comes from taking care of other symptoms.

What I’ve come to realize is that for optimal health, we should all be utilizing some combination of holistic medicine to compliment the care of our doctors. The natural world, right down to the food we eat, the sport and exercise we engage in, our self-care and body work, our supplements and vitamins are key to maintaining and preserving our health and our doctors should be there in the event of their failures, not to keep us healthy. Let’s face it, our medical system, at least in America is not built on wellness and prevention. It’s centered on sickness and repair. For more on these thoughts, see this blog post.

The wonder of alternative medicine is that it’s completely natural and often quite good for your health and longevity, while the prescription drugs prescribed by your doctor are often toxic, poorly tested and can have lasting, devastating effects to your long term health. That is not to say that something is safe just because it’s natural. Cyanide and arsenic are naturally occurring compounds, but they’re still poison. That is why one doesn’t simply grab a supplement and give it a go without first fully vetting it first to be sure it is safe to take. Once you’ve been through that process and decided a supplement is right for you, you also want to be sure its effective. The first article in the general section below will teach you how to do all this.

Below, I have or will provide links to every article I have written on the substances that either are now or were at one time part of my personal protocol. If I no longer take them, I explain why I discontinued them and whether or not I recommend them. As well as my personal insights on their performance, they include all of the research (along with links) that persuaded me to take them in the first place, so long as it’s publicly available information on the internet. I also try to point you toward places where you can conveniently locate these items in their most affordable forms, as many of us have few resources and little energy to go maintaining our own gardens or making our own concoctions. I do have a couple of pharmacopeia’s I use at home, one of Cherokee origin and one written by a Naturopath that I may occasionally quote. Books like these are great resources and borrow from cultures that have practiced holistic medicine for thousands of years. No, there is no clinical testing to go along with these remedies, but they withstood the test of time from one healer to the next in a long line. They include common uses, how to properly administer the substance and include safety precautions.

Below is a list of articles I have written on the subject, by category. The list will grow as I have time to write these articles and as I try new things. Once I have completed everything I have tried, I may begin to include some information on supplements I have not tried personally, but I have mixed feelings about sharing information on things I have no personally tested. Still, there are many supplements out there popular in the community that I have not tried due to expense or hesitation about side effects and I think they’re worthy of a conversation for those reasons alone.

General Articles

  1. Getting Started with Supplements: This handy how to guide will show you how to select, research and determine whether or not a natural medicine is safe for you, along with how to test its efficacy.
  2. What Got ME Out of Bed: This is the first article I wrote about my protocol. At the time, I still thought I had ME/CFS. Regardless, it’s still what worked to get me out of bed and I still take many of the supplements listed. I’m working on writing individual articles for each item listed. In the meantime, this is a good place to go, if you’re looking for a place to get started.

Supplements, Herbs and Remedies

Antioxidants:

Antioxidants are substances which work on our mitochondria to help fight the oxidation process. They “clean out the rust” from our cells, so to speak, allowing them to function properly and encourage the repair and production of new, healthy cells. There are many antioxidants, many of which do something a little different. The best part of taking an antioxidant is that they always provide a lovely boost of energy and are some of the most powerful anti-agers known to man.

  1. Acytl-L Carnitine: an antioxidant which supplies energy to the mitochondria and assists in the repair and production of the myelin sheath (the protective covering of nerve endings) and muscle tissue; provides a significant boost in energy and aids in healing cognitive dysfunction.
  2. PQQ: It isn’t technically an antioxidant, but does much the same thing. Get great relief from this wonder substance with its power to quell inflammation, reduce brain fog, regulate blood pressure, improve sleep, give you a big energy boost and even grow new mitochondria.
  3. Glutathione: Coming Soon.
  4. Co-Q-10: Coming Soon.
  5. Curcumin: Coming Soon.

Energy Production and Muscle Health:

  1. D-Ribose: Coming Soon.

Pain Reduction:

  1. Biofreeze or Arica Rubs: A good natural pain relief rub for joint and muscle pain.
  2. Stinging Nettle Tea: Helps alleviate joint pain by alkalizing and releasing uric acid.
  3. Cannabis: Coming Soon
  4. Bromelain: Coming Soon
  5. Acytl-L Carnitine: Since this powerful antioxidant helps supply the myelin sheath that protects and helps nerves to communicate, it also offers some relief from neurological pain.
  6. Curcumin: Coming Soon
  7. Heat and Ice: Never underestimate the power of icing or heating to get pain relief. Water therapy is incredibly helpful for me, even if it’s not particularly cold or warm. Just getting the weight off all my joints and floating for a while always brings me added pain relief for several hours. Just remember, heat brings inflammation, so you don’t want to abuse it. Ice is usually the better option.
  8. Exercise: Yes, I am seriously going there, on a drug list, no less! Exercise is essential medicine for the body and yes, it offers serious pain relief. It releases uric acid from the joints and builds muscle to stabilize them. It also increases serotonin and dopamine, two very powerful pain fighting substances.

Digestion:

  1. Salt Water Cleanse: Using pure sea salt or pink Himalayan salt in warm water to cleanse your bowels is a natural alternative to using laxatives or stool softeners. I discovered this after realizing that miralax was actually partially to blame for the chronic inflammatory state of my bowels.
  2. Lemon Water: Lemon Water has a number of benefits, but I use it primarily to help keep my system regular. Much gentler than the salt water cleanse, but still quite effective.
  3. Stinging Nettle Tea: I could list this one under almost every heading on the page. It does an excellent job fighting heartburn, reduces nausea, helps to keep my bowels regular and keeps the chronic yeast problems in my mouth and esophagus at bay. It also offers mild pain relief, and relieves MCAD bladder irritation and helps to eliminate uric acid from arthritic joints.
  4. Baking Soda: A tsp of baking soda dissolved in 4 oz of water has been our home remedy for heart burn for as long as I can remember. Upset tummy? Baking soda. Baking soda also works well as a rinse against oral yeast infections and for teeth whitening (not too often, our zebra teeth are weak thanks to our defunct collagen).
  5. Probiotic w/Prebiotic: Whether you struggle with IBS, gastroparesis, a FODMAP issue or just the occasional digestive issues, a good pre/probiotic combo is a great addition to help keep your intestinal flora healthy.
  6. Low FODMAP Fiber Supplement

Vitamins and Minerals:

Most EDSers suffer from mineral and vitamin deficiencies to varying degrees. Most of us don’t digest our food properly due to IBS, gastroparesis and other digestive issues. While there are many debates about the worth of multivitamins, I do recommend that zebras take a good quality multivitamin and I will tell you why. My corneas have been thickening for years and my ophthalmologist couldn’t explain why. It wasn’t until I started researching the topic recently that I discovered that it’s likely due to a vitamin A deficiency and that it can actually lead to them cracking. As it is, my eyesight is already affected by my EDS, glaucoma runs in my family and the thickened corneas are leading to very high pressure in my eyeballs. All not good for my long term vision. In a perfect world, we would all have access to full panels for vitamin and mineral deficiency, but that isn’t always the case. If you don’t know, supplement.  Here’s what I take.

  1. Magnesium: Magnesium supplementation is recommended for anyone who suffers migraines and is an extremely common deficiency in EDS, fibromyalgia and POTS.
  2. Vitamin D3: Another common deficiency among spoonies, vitamin D deficiency can sap you of energy and lower your immune resistance. Without it, our body doesn’t process calcium well, contributing to osteoporosis, as well.
  3. Vitamin A: extremely important to eye sight.
  4. Super B complex: Another common offender for migraine sufferers and EDSers, vitamin B12 is essential for energy and neurological health.
  5. Flax seed oil or fish oil: Omega 3 fatty acid is essential to soft tissue and cardiac health and can help relieve joint pain.
  6. Vitamin C: Gives the immune system a boost and helps to prevent infection. Also helps a bit with bruising.
  7. Potassium: Potassium supplementation can be tricky, as it is something you can have too little or too much of and it effects the regulation of your heart. However, many of us with POTS are deficient in potassium and supplementation is often necessary. Testing is usually recommended for this vitamin. I get it from drinking Oral Rehydration Solution and supplement only when needed based on my symptoms.

Antibiotics and Anti-fungals:

There are many natural antibiotics and antifungals. Since many conventional antibiotics are known to damage connective tissue, they’re a great alternative to getting a script from your doctor. These are the ones I’ve tried and have worked and how I use them.

  1. Colloidal Silver
  2. Unrefined Coconut Oil
  3. Vitamin C

 

 

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