Being a Zebra: Managing Ehlers-Danlos naturally

Warning this post is looooong but, if you are interested in how I have managed my Ehlers Danlos, this post is very comprehensive.

I mentioned in my story that I don't technically have an autoimmune disorder but a rare genetic disorder called Ehlers-Danlos Syndrome (EDS). Those with EDS call themselves zebras because doctors are often only looking for what is obvious when a diagnosis could be something not so obvious. EDS is very difficult to diagnose. I have been sick my whole life. I can't remember a time I wasn't in pain. The best way to describe EDS is that a person who suffers with this disorder, has faulty collagen production in their body. EDS is a spectrum disorder with different classifications. I happen to have the hypermobility type but have a lot of crossover to the vascular type. My geneticist told me that, although they can't genetically confirm EDS Vascular they can't necessarily rule it out because they really don't know enough about the genetics of this disorder to be confident and that was Cleveland Clinic! He asked me to come back in 2 years when, hopefully, they would know more. This is often common for those of us with EDS. EDS is also a spectrum disorder because some people have very few symptoms while others are completely disabled from it.

For me, I am somewhere in the middle. I have extra stretchy joints that, before changing my diet and lifestyle, were always in pain. I have osteoarthritis in both knees and both feet. I was diagnosed with fibromyalgia but about 6 months on the Autoimmune Protocol my rheumatologist has said that I no longer meet the criteria for. I have IBS that, before AIP, I had chronic constipation. It was the one thing that made me look beyond AIP into other alternative therapies. Last year, I suffered from such severe fatigue that there were days that I couldn't get up and go to work. After work I would come home and sleep on the couch, barely eat, and then go to bed. I missed a lot of life because I simply didn't have the energy for it. However, now I have energy to burn. I also have Postural Orthostatic Tachycardic Syndrom (POTS). POTS is a neurological disorder where a person suffers headaches, dizziness, irregular heartbeats, weakness, low blood pressure, and easily dehydrates. POTS has been my biggest nemesis. I usually end up in the hospital every two to three months for IV fluids. This becomes a nightmare because the vascular part of this disorder causes me to have very weak veins that are difficult to find for an IV. I have been stuck as many as 14 times in the endeavor to find a vein for IV fluids. It also causes me to end up in the hospital for a common cold. The good news is that in the last 3 months my blood pressure went from 90/52 to 121/78. I also had a cold and didn't end up in the hospital for it! Woohoo! Ironically, about 5 months ago, my neurologist recommended drinking bone broth on a daily basis as a treatment. Before his recommendation, I was drinking bone broth occasionally and using it in many recipes. I believe that adding at least one cup of it a day has been the difference in treating this disorder.

Along with my EDS, I was injured 17 years ago when a lifeguard threw me into the shallow end of a swimming pool head first. At that time, I literally broke my neck, cracked a vertebrae between my shoulder blades, and herniated a disk in my lower back. I also sustained a head injury. At the time of the injury, I was in the best health of my life. I had a friend who was a Functional Medicine practitioner who noticed my symptoms and gave me some great advice. Treat your symptoms through diet and lifestyle. No sugar (including fruit), no wheat, no yeast. She also recommended that I eat no carbs during the day and no protein at night to increase energy during the day and serotonin at night to help with sleep. This was so close to AIP that when I read about AIP it made sense to me. I ate this diet for 3 years but lost my way when I became involved with someone and eating at expensive restaurants became the norm. In retrospect, I can see that is when my health started to go backwards again. It took 4 years to recuperate from the injury and its effects still follow me to this day. I now get botox injections in my neck and back to keep muscle spasms to a minimum.

Fast forward to last year, I was sitting in my doctor's office. He had spent the last 2 years trying to figure out what was wrong with me to no avail. He kept sending me to different specialists. I would come back with some weird diagnosis that he would quickly dismiss. He kept saying "one day you will have that one symptom that will put everything in place." That day was in January of 2016. My doctor came into the exam room and apologized for keeping me waiting so long with the reason that he was with a 29 year old woman who had been diagnosed with fibromyalgia at 19 but, who in reality, was hypermobile. I stated "I'm hypermobile." I could see the lightbulb go on in his head. He demanded to know who told me that and started to scour my medical records. I told him that it was the rheumatologist he had sent me to a year and a half ago. He informed me that the doctor had never put it in my records. He said, "that's it!" "That's the symptom." "It explains everything." He then put me through the Brighton Scale that diagnosis for hypermobility. I was a 6 of 8. He wanted me to go back to the rheumatologist to confirm his suspicions. I left his office both hopeful and confused. I went home and researched hypermobility and came across EDS. It was like I was seeing myself. I emailed my doctor and asked him if that is what he was thinking. He responded with a resounding YES.

I didn't want to go back to the same rheumatologist who missed the diagnosis a year and a half earlier because he was looking for horses not zebras so I researched and found a Cleveland Clinic rheumatologist familiar with EDS. It took 3 months to get in to see her. This time I went to the appointment armed with information. I told her why I was there. She examined me and said Yep, its EDS. However, she told me that the only treatment was steroids, pain meds, fibromyalgia meds, anti-inflammatories, sleep meds...... As she listed the meds, I went home with a prescription for Lyrica and feeling shell shocked. I filled my prescription and was floored by the cost $120 WITH insurance. I saw some improvement of symptoms but still had severe pain in my feet. She upped the dosage. I started to research natural ways to heal your body. I came across AIP but everything I read said that it would not be effective for EDS since EDS is not an autoimmune problem. Every blog, medical journal, EDS webpage said that there were only minimal diet, supplements that could help with EDS symptoms. I decided that Paleo was at least worth a try. I wasn't willing to do the autoimmune protocol. That was too extreme for me.

At first I dipped my toes into it. I eliminated sugar and gluten and found a huge improvement. I then increase fat and eliminated vegetable oils. More improvement. The pain in my feet was gone! I had more energy. I had an appointment with my rheumatologist and told her that I wanted to try a more natural approach. She gave me a schedule for backing out of Lyrica but was very skeptical. I then started researching AIP. I started buying better vegetables, eliminated processed foods, and started eating only foods that I cooked however I quickly saw my food budget increase. It was time for a sit down with the husband. It was May and the school year was almost over. I told him that I wanted to do AIP full force. Being the wonderful man that he is, he said, "Do whatever you need to do for your health." I planned it for the day that I was on summer break. I purchased slowly. Adding a few things at a time to my pantry in preparation. I didn't want to break our bank on the first day.

The Paleo Approach I started the protocol full force the second week in June. I felt so much better quickly however I hit a wall about 2 weeks later. I was sapped in energy, had terrible diarrhea , headaches, rashes, itchiness. What I didn't know then that I know now is that is how my body detoxes. Every time I do a significant change in my diet I get these side effects. They went away after a week. After 30 days, I started to reintroduce foods. By August, I was eating a regular Paleo diet. By September, I was sick again. I figured that I had reintroduced foods way too fast and went back to the 30 day protocol. It was at this time, that I purchased the Kindle version of Sarah Ballantyne's book . I read it cover to cover and followed it religiously until about 2 months ago. What I eat is mostly AIP because it is focused on gut health and all of my research stated that EDS patients tend to have greater gut permeability. I have introduced all of the foods that I can on AIP. That is the great thing about it. You can really isolate what actual foods are giving you problems. However, it is clearly stated in Dr. Ballantyne's book that AIP is an elimination diet. There are 4 phases and the goal is to eventually know what your food triggers are and develop a lifestyle that works for you. I continued to do research specifically and nutrition, digestion issues, and collagen relating to EDS (though there is very little on collagen and nutrition together that is specific to EDS). I then read Dr. Terry Wahl's book: .

The Wahls' Protocol

Dr. Terry Wahls' book is based on her experience and research in healing MS and other neurological issues such as traumatic brain injuries and seizures. I was interested in her research because I listened to her Ted Talk "Mindy Your Mitochondria" where she states that it is possible to turn genes on and off through a nutrient dense diet that is divided into a specific ratio of greens, colorful, and sulphur based fruits and veggies. The book also states that it is possible to heal seizures through her Wahls Paleo Plus diet. The diet has three level Wahls Diet, Wahls Paleo, and Wahls paleo plus. Each is more restrictive than the prior. After doing independent research of her ideas, I discovered that there is great deal of validity to her research however the type of seizures that I have are not typically helped by this diet. Furthermore, my research in collagen, revealed that carbohydrates are necessary for collagen health. I took away from this how to increase my nutrient density and how to incorporate various foods to ensure that I was getting the right amount of nutrients to fuel my ever healing body. I also increased my coconut oil intake because it contains medium chain triglycerides (MCT). Plus I decreased carbs to one serving a day of vegetable based carbs such as sweet potato or plantains. I also don't snack between meals and stop eating after dinner and don't eat for at least 12 hours (recommended by Dr. Wahls, Dr Ballantyne and my sleep doctor). From here I started to fine tune what I could to specifically support my EDS through PubMed and Ehlers-Danlos UK research.

Here is what I finally fell on:

Those of us with EDS are prone to have POTS and IBS. It isn't understood why we are prone to POTS. However there are several studies on why EDSers have digestive problems. Most research agrees that we are more prone to microscopic holes in our intestines that leads to increased permeability. This leads to the ingredients in our digestive system leaking into our bloodstream. This is commonly known as leaky gut. There are a couple of theories as to why this is true. A couple stated that our defective collagen keeps the intestines from being able to maintain the appropriate cell structure that maintains the cell walls. Two other studies theorized that it could be a precursor to mast cell development. Either way no one really knows and the best way to heal leaky guy is AIP. As stated above, I researched The Wahls Protocol. Her approach helps your body heal the body at a deep cellular level. She theorizes that by increasing fats (especially MCTs) and decreasing carbohydrates to 1-2 times per week that you can heal your cells at the genetic level. I didn't find any hard research to corroborate this but I did find a lot of research that implied that we just simply don't know enough to know if this is possible or not. However, I did find a huge amount of research supporting the fact that a diet low in carbs and high in MCT is very healing to the neurological system. I found that 1-2 carb servings a week caused too many negative side affects for me and messed up my POTS. My research also revealed that sustained very low carb or ketogenic (removing all carbs) diets can really mess with your hormone levels especially cortisol. Another plus is that this type of eating is great at regulating blood sugar even for someone like me who has hypoglycemia.

The last part was researching nutrition specifically for EDS. There are only about 3 studies out there that are directly related to this topic. There was also one case study done. All of the studies came to the same conclusion about nutrition but they used supplements in their research. I decided to figure out what foods contained the same nutrients that the research was recommending. I got the idea from reading doctor Whals' book. She ran into the same scenario when she was researching PubMed for information to heal her MS. From studying nutrition, I knew that supplements are never as effective as eating whole foods. Furthermore, you can some many more micronutrients when you actually eat the food. I also read where those of us with EDS are more sensitive to toxins in our food and are more prone to food allergies and sensitivities.

Here is the breakdown to what the EDS studies suggested and the foods that you can eat to get those nutrients. I haven't broken down the serving size to the milligram suggested in the research. So I eat a basic AIP phase 2 diet, with the ratios of the Wahls Paleo Plus diet, 1 serving or carb rich food, 1 serving of fruit a day, no sugar including honey and maple syrup. Personally, I don't eat dairy except an occasional feta, blue, or goat cheese. Any more and I get sick. I also don't eat nightshades except an occasional potato because I react to nightshade but if you do the AIP elimination and find that you can eat them then enjoy! In that I make sure that I hit all of these EDS suggestions several times a week (I'm working on organ meat) and include at least one cup of bone broth a day (my POTS has been under control since doing this one thing).

Protein: (Dr. Wahls suggests 6-12oz depending on your size and gender: small women 6oz large men 12oz) From grass fed meat, (grass fed meat is leaner, has fewer toxins because toxins are stored in animal fat), wild caught fish (lower toxins again), free range chicken (high nutrients because of the variety of their diets), eggs (make sure you do AIP before you include eggs they are one of the highest in food sensitivities)

A note about supplements: I listed the supplements that I take and why. This has been a lot of research. There is so much info about a miracle herb or supplement. The best advice I read is only take a supplement if you know why you are taking it. It is also recommended that to see if you are really reaping the benefits of a supplement, that you take it for at least 30 days then go off of it for 2 weeks and see if there is a difference. The reality is that, under normal circumstance, eating this way you would never be deficient but those of us with EDS have to have the listed nutrients at higher than normal levels to make a difference.

C-Linoleic Acid-Meat, organ meat You can get other linoleic acids from flaxseed and primrose oils. Primrose oil is also healing for nerve pain. It has really worked for me.

Magnesium-greens, nuts, seeds, (after AIP) seaweed (not AIP recommended but has lots of vit B too), I also take 400mg at night for sleep and leg pain.

Vit. C- greens, citrus (we need so much vit. C that I take a supplement 2x a day)

Carnitine-organ meat

Q10- organ meat

MSM- black and green tea, swiss chard, alfalfa, apples, raspberries, cabbage, broccoli, cauliflower, brussel sprouts, bok choy, onions, garlic

Silica- leeks, green beans (elimination phase of AIP), strawberries, cucumbers, celery, asparagus, rhubarb, radishes, romaine lettuce, marjoram

pycnogenol- the only natural source is pine bark tea and I happen to be allergic to pine. It is an antioxidant and other substitutes that I read could be apples, cinnamon, dark chocolate, cranberry, green and black tea (I make myself a cup of coconut milk hot chocolate with cinnamon and vanilla almost every evening)

Vit D- the only way that non-prescription vit D is made is through sunshine. I really work on getting at least 15 min/day. Next winter I will probably use a tanning bed. I have had to weigh the pros and cons of this but I have been severely deficient in vit D before.

Supplements

turmeric 2 x a day but make sure that the turmeric you take is 95% turmeric extract so you actually get the benefits of it. I have to order it from Thrive Market

Alive: multivitamin (reasonably price multivitamin at Walmart that is food based)

Magnesium: 400 mg at night (research recommends 2 x day but I find I can't tolerate it since I get so much in my diet)

Vit C- They recommend 1000mg/day. I can't each that much!

Fish Oil- They help maintain a good Omega 3/Omega 6 ratio. If you eat a lot of fish then you probably don't need it but my husband isn't fond of fish so I only eat it a couple of times a week. Don't cheap out on this one. Low quality fish oil degrade quickly

Primrose oil- it is a linoleic acid that helps collagen and settle parasympathetic nerve problems. My skin used to be crazy painful. Docs said it was from nerve damage in my spine.

Flax Seed Oil- I just reintroduced this. It is a great source of Omega 3, 6, and 9. Just do the oil. The seeds are not digestible.

So if you made it this far then good for you! I hope that my research helps you come to some conclusions for yourself. If you have a question let me know.

#EhlersDanlosSyndrome #EDS #EDSZebras #paleoautoimmune #Paleo