6 Things I'm Learning About Life with an Autoimmune Disease
Health issues I’m currently dealing with:
Activated Epstein Barr Virus (EBV)
Leaky gut (permeated stomach)
MTHFR gene mutation (poor detoxification and fatigue)
Chronic Fatigue Syndrome
Numbing + weakness in my left leg
Arsenic, lead and mercury poisoning
Previously, I’ve also had:
SIBO (misdiagnosed as IBS, overgrowth of bacteria in small intestine)
Very little good bacteria in my microbiome (likely caused from SIBO)
Chronic yeast infections
How I’ve managed to treat EBV:
I was actually misdiagnosed for 13 years. Originally the doctor (a Rheumatologist) said I had Fibromyalgia. It wasn’t until the summer of 2017 that I found my Functional Medicine doctor and found out I have EBV, which accompanied the mononeucleosis I had for 8 months at 17 years old. Because of this, I just recently started treating the EBV a year ago. I have taken Low Dose Naltrexone to increase the endorphins and help calm my immune system which was forcing my left leg to be numb and dead. I took Valtrex for 4 months at a relatively high dose to help kill the virus. I tried UVLRX which is a light therapy to kill the viruses in your blood. I then switched to Ozone Therapy which has made the most massive change. A handful of 10-pass treatments have completely transformed my body. The first three treatments created a horrible herx reaction, and I was down for days following each one in pain and fatigue. But after the fourth, I had almost no herxing and felt so much better!
Leaky gut: What is it and how do you treat it?
It’s THE WORST. Basically, leaky gut is gut permeability. Think of it like this really thin layer of an organ with holes in it. So every time you eat something, it will leak into your bloodstream. So if you have chronic inflammation and pain, things like nightshades (tomatoes, egglplant, etc.) will leak into your blood causing horrendous pain and inflammation. It is really tough.
So, knowing some of this, I did a ton of research and found Dr. Sarah Ballantyne (The Paleo Mom) and followed her Autoimmune Protocol which includes a very strict elimination diet. I recommend doing this for a minimum of 6-9 months without cheating. Every time you have something you shouldn’t, you have to go back to day 1. NOT EASY. But it is the single MOST EFFECTIVE thing you can do for yourself. If you can’t afford a doctor or special treatments, this is a huge thing you can do for your healing. I recommend purchasing The Paleo Approach by Dr. Sarah Ballantyne. That book should be your best friend and daily resource.
Aside from her food protocol, I also added in glutamine 10g/day and collagen peptides 2 scoops/day.
What is SIBO?
Small intestinal bacterial overgrowth. It is exactly what it sounds like. It causes horrible digestive issues, bloating and a whole host of other problems. Once we treated this, everything changed. It truly cleared the way for me to have a chance at healing. And I’m pretty sure I’ve been dealing with it since I was at least 17.
The problem is that it is commonly diagnosed as IBS. So you have to ask your doctor for a SIBO test. Most don’t know anything about it so you need to advocate for yourself.
We treated mine with botanicals, antobiotics and a Low FODMAP diet for months. My doctor and I agree on this one big time- you need all three or it won’t go away. And you must re-test after you finish the protocol to make sure it’s gone. That’s the only way to know.
My thoughts on supplements
The common question I often get asked is: What supplements do you take? Well the answer to that is “too many!” But honestly, this is an ever evolving answer for me. Sometimes, I am on 30/day. Other times, I cycling off them all. Taking too many supplements for too long can be very taxing on the liver so I highly recommend rotating and cycling on and off. I also don’t believe in taking supplements unless there’s a specific test that said you needed it. Otherwise, we can just be constantly trying new things, popping different pills and never knowing if that’s actually something our body needs. Regular blood work, stool tests, etc. will give you the answers to really get specific.
So that being said, I won’t be giving you my entire regimen. I will say that Energy Bits are a staple for me. Chlorella and spirulina are great at detoxifying the liver.
I also love Rhodiola 500mg once every morning as I work through cortisol and adrenal issues and also just a natural energy boost.
Celery/coriander oil are also wonderful additions to help detox the liver.
Magnesium, GABA Melatonin and L-Theanine are clutch for sleeping. Sleep is the most important thing you can do for yourself. So I’m not messing around.
I love CBD oil and bath bombs as well for sleep. There are a ton of different great brands on the market - you need to see which dose or brand is most beneficial for you.
The Medical Medium protocol
Don’t get me wrong. I love doing celery juice and its healing properties are proven time and time again. I’ve also taken colloidal silver and incorporated fruits back into my diet. But I don’t ascribe to everything he talks about. I am fully into the AIP and know that is what works best for me.
My biggest recommendation: seek out for people who can help you!
One of the biggest concerns a lot of people express to me was also a huge concern of mine in the beginning, money! So what do you do when you can’t afford a Functional Medicine/Naturopathic doctor? Step up your game! AIP should be the first step. Get all the inflammation and toxins out of your life ASAP. Ask for EBV blood test, cortisol and adrenal urine tests, SIBO breath test, stool tests, full hormone panels and if you suspect heavy metals/mold, test for those too. Even if your doctor doesn’t know how to treat these things, at least you will have tests, covered by insurance, that you can do research with OR you can spend money on a functional doctor and already have all the tests done so you minimize the costs as much as possible.
No matter what disease or issue you are battling, I know from personal experience that spending a little money now can save a TON and help you out so much in the long term. Do your research, don’t just go to any doctor. After many different doctors and even mis-diagnoses, I’ve managed to find the right people to help me heal. Having the right doctor and support system has made my journey much easier and given me the answers to live the best I can with my autoimmune disease.
My story continues and the journey is long, but I can only hope that by telling it that I can educate and help others to recognize and take action.