For many POTS and autoimmune patients there is an underlying viral contributing factor or trigger such as Epstein Barr. There is even allegations that autoimmune is actually a response to the Virus running around in your body. Maybe you have Cytomegalovirus or another viral trigger but since my experience thus far has been with Chronic Active Epstein Barr Virus, or CAEBV, I will only speak to what I know.
Sometimes the virus becomes stronger than our often suppressed yet erratic immune system and wreaks havoc on our ability to control the immune system or what it decides to attack and how it makes us feel. Let me first say this: you are not alone and you have options. Yes, being sick sucks but we are not helpless. Treating it is not inexpensive, in my opinion, but the alternative is a far worse choice and I believe you are worth the investment.
We are told that if you have your health, you have everything. Well I don’t know about you, but I want everything. And I am determined to both have everything and to help you get it as well. I have beaten this multiple times (explained below) so I know it is possible. I encourage you to explore your options and find one that works for you and your body. As there are several strains of the virus, no one treatment works for every strain. (1) It is alleged that there are many more strains than have been discovered. (2)
CAEBV, for short, is part of the herpes simplex group of viruses that include cold sores, genital herpes, shingles, chicken pox and mononucleosis. Like a cold sore virus, EBV doesn’t actually die and leave you with immunity for life as chicken pox would. It stays in the body, hiding until it either does or does not see an opportunity to come out and do its damage. 75% to 90% of the population carry the virus but only a small percentage have it manifest as Chronic Active Epstein Barr or CAEBV. For this small percentage it becomes a serious and debilitating problem. At the advice of my own team of doctors and my own research to explore my options, I have been led to believe that the best course of action is to boost the immune system until it is strong enough to force the virus to go dormant. If you are on immune suppressants, then I am not sure if this is possible. However, I am no expert on pharmaceutical medications and their limitations. There are also treatments like UV IV therapy. I interviewed an individual that tried oxygen therapy and she did not have luck with that method.
I had the virus for 2 to 4 years years and it wasn’t until I was diagnosed with my 2nd autoimmune and had 2 more on the way before anyone thought to look for the virus. As my doctor put it, my antibodies were “through the roof” at that time. Treating it changed my life. In fact, it gave me my life back. But after I was feeling very good it was triggered again and this time, I discovered that I was allergic to the previously used cure. Depending on this as a long-term could damage my brain. It was also likely to drain my wallet and half a day from my schedule each time I utilized this treatment. I had to find alternatives. This last bout was worse than before, and I was forced to quit my job because I couldn’t hide how sick I felt nor do my job.
First let me tell you what the first “cure” was. My integrative doctor put me on Vitamin C IV for 6 weeks. It was very effective but took a while and was between 150 and 180 dollars each treatment. And it only worked until the virus became active again. If this is an option, I do suggest it as a support treatment. Pros: it works and is very high dose. Cons: it can be costly to some, takes half a day, has to be done weekly when the virus is active, and you will need maintenance doses or have to re-treat when you relapse.
My next treatment was developed by myself as a result of reading a controversial new book and mixing this author’s theories with my functional medicine background and education on related syndromes/diseases, and background in AIP/Paleo healing. I must warn you that this author seemed to me radical, crazy, a little kooky (and that says a lot coming from me) but he was the only one that had ANY answers. They were the only things I hadn’t already tried or ruled out as an option. The following account details how I took back my body from CAEBV. For your convenience, I have included affiliate links if you would also like to try them. For my full disclosure policy click here
The short version (aka nutshell version)
- I supported my adrenals because having the virus is very hard on the adrenals. Adrenal fatigue causes immune suppression and chronic fatigue. This creates a vicious cycle.
- I supported my immune function with anti-virals and supportive supplements and targeted foods. I used this book as my primary source of which foods to focus on, excluding any food that I knew was not compatible with my body as a result of my AIP background. I can also suggest this book, which is from the same author but was not released until after I began my protocol.
- I detoxified as if my life depended on it. I did this because the body will see virus bodies (as they die off and replicate they leave their dead viral bodies in your system which can then go to organs and cause havoc) as toxins and also because some things like metals can actually feed the virus. Detoxification became a bigger priority than ever.
- I opened myself up to the fact that I may have to tweak or troubleshoot this AIP/Wahl’s Paleo diet that had helped me so much. I had been AIP/Wahl’s Paleo for years and while it had gotten me a very long way and healed me to a great degree, it wasn’t keeping me from having CAEBV. My body just needed more. So I had to examine some parts of it against what this radical, controversial author was saying. So taking into account that he may be a kook and was not a doctor, I decided what the hell.
I then had to decide the logistics of how I was going accomplish these things.
- I determined what I needed and broke it down into the first 3 steps above.
- I made a list of the supplements I was going to need and then narrowed the list down even further. I first picked the supplements that would treat more than one issue. Next I included some that, according to the author, were “the first ones to get”.
- After that I was onto tackling the food differences. After exploring other ideas, comparing them to what made sense to me and my own bioindividuality, I adopted the parts I was willing to add and identified what I felt would not work for my body.
- I had already learned valuable things about my bioindividuality, such as what foods made me feel good or bad (if you haven’t done this I suggest starting with a strict AIP or Wahl’s Paleo. These are great starting points and can be tweaked after you identify foods that you do well with and ones you do not). I felt so bad at this point that I had nothing to lose and everything to gain
- After some experimentation, I decided on doing Wahl’s level two but with less animal fat, only small portions of animal protein and added fruits. Wahl’s doesn’t limit food or dictate how much meat to eat although it does encourage organ meat and high quality choices. This was my baseline protocol and it allowed many of the foods suggested in this “new” protocol. The juicing got added later as I discovered whether or not it was beneficial to my journey.
My Actual Protocol: (the detailed version)
As a result I ended up being a hybrid of the Anthony Williams’ protocol and Wahl’s Paleo (I had already re-introduced the foods that Dr. Wahl’s allows in her protocol but Sarah Ballantyne omits from her elimination phase).
- While keeping the recommended number of vegetable servings of AIP/Wahl’s Paleo, I focused on specific fruits and vegetables recommended by Anthony Williams, this radical and controversial author of The Medical Medium.
- I ate 9 cups of vegetable divided into the 3 groups recommended by Dr. Wahls and focused on the specific fruits and vegetables recommended by Anthony Williams.
- The apples and bananas he recommended were in addition to the 9 cups, as Dr. Terry Wahls recommended they be for her protocol. The combination ended up being about 14 cups of fruits and vegetables per day total.
- This made a difference in my energy very quickly. I could feel a major difference in my adrenals and thyroid. My sjogren’s symptoms started fading. My mouth wasn’t so dry and my sex drive came back. I could enjoy sex for the first time in 2 years. These improvements were huge! I was getting somewhere.
- I added in more fruit than was recommended by the AIP protocol. I admit I had a fear of excess fruit. But I learned to balance the fruit with potassium and sodium instead of protein. I basically ate fruit for desserts and snacks in addition to my meals. These fruit based snacks improved my nutrition by incorporating more high potassium foods like coconut water and foods like apples. I noticed a difference. With a history of hypoglycemia I had never been able to eat an apple without feeling “wonky”. I love apples now. And coconut water. They both make me feel so good.
- I learned to listen to my body and I indulged in foods that I craved and were recommended. If bananas tasted good, I ate as many as I wanted. Another week it was asparagus and another it was kale. If I craved chocolate, I knew I was low on magnesium (a pattern for me) and ate magnesium rich foods. (Cocoa is a reintroduction for AIP, allowed on Wahl’s and discouraged for Medical Medium. Use your best judgement for your own body)
- I started to detox more aggressively. One day a week, I did a juice cleanse.
- Anthony recommended a few different ways to cleanse, including a 28 day protocol (it had no meat and almost no fat included. I made it 3 days even with cooked foods added. I had meat about 2ce a week for 2 weeks and then was craving meat so bad I decided I wasn’t going any further). luckily, he also mentions juice fasting.
- When I tried juice fasting, I couldn’t make it past dark so I just did it more often. I settled on once a week, juicing until dark and then having a regular Paleo meal with extra veggies, a small portion of meat and fruit and nuts (an AIP reintroduction) for dessert.
- Because of bioindividuality, I suggest that others experiment with different forms of detox protocols. Find one that feels right to you and that makes you feel good.
- I reduced my meat and animal fat intake.
- I didn’t become a vegetarian. I have so many food restrictions and food allergies that eating beans, seeds and grains were not a good idea for my body. I also know they challenge my hypoglycemia.
- According to this book, my body needs 85 grams of protein and I find that if I don’t get that much, then I am unsatisfied and crave protein. It contains a formula if you are interested in calculating your needs. My vegetables gave me about 1/2 of my requirement and allowed for a small portion at dinner (half of what I used to eat at 4 ounces) and a few ounces eaten as a condiment at lunch (about 2 to 3 ounces).
- I chose leaner cuts and left the excess fat on my plate.
- I love being paleo and know how good this change to paleo made me feel versus eating a grain based diet. I also know that vegetables are much more nutrient dense than grains. Even David Wolfe, a vegan, even refers to meat as a “superfood”. I also know my body needs things like liver, beef and wild caught fish. And bacon is delicious.
- I still ate avocados, nuts and coconut oil but switched out my full fat canned coconut milk for coconut water and started reducing my animal fats. I by no means am “low fat” but I am also no longer frying in bacon grease or eating fat bombs. I switched to turkey bacon on weekdays and cut back on fried foods. I tracked my fat and it was at about 30% of my calories where before it was much more.
- I added in celery juice for gut health since I am always fighting low stomach acid. (and it helped other things too). Every morning on an empty stomach. It was basically my coffee.
- Anthony has an entirely different theory about “leaky gut” and how to fix it. So I combined both theories, thinking I’d do everything I could. Which meant drinking fresh celery juice every morning. I also got serious about daily bone broth or collagen. I started rotating my probiotics and exploring fruits that helped gastrointestinal health. If nothing else, the added minerals from this daily juice are giving me some great energy and nutrition. I’m still waiting on having great hcl but I feel better when I drink the celery juice than when I do not.
- The probiotics that I rotated were DaVinci Labs Probiotics, Douglas Labs muti-probiotic 40 billionand Garden of Life Once Daily Ultra 90 billion Probiotics. I particularly like the first two because they do not have to be refrigerated but decided to also include the third because of it’s great quality and strength.
- I started juicing in addition to my vegetable servings. When I started the juicing days, I wasn’t sure about this. But I noticed I started to feel better from the extra nutrition and my digestion started to improve some. I wanted to see what more would do. My hair and nails started to get a little strong and thicker and I had less breakage in both. I was getting healthier.
- I started some supplements he recommended that treated multiple conditions. To get them all was unrealistic and there were many to choose from. So I narrowed it down and chose the ones that were mentioned for more than one of my 3 categories of focus: immune system, detox and adrenal support. After that, I chose the ones that were listed at the tops of the lists, as that was recommended. I did what I could afford and what I thought would make the biggest impact with my limited budget.
The Supplements that I take.
These are the supplements that I take. They contain no allergens or non-AIP ingredients and are very effective. They are also free of any tapioca (with the exception of the Ascerola Cherry Powder) and of any yeast, fungi, or ferments. There are no grain derived ingredients of any kind. No soy or gluten.I love the way they make me feel. So much that I went to my doctor so he would “prescribe” them and my flexspend account would help pay for them. He did that for me and I am thankful. You will notice some repetition because these supplements serve multiple purposes, as noted previously. For a gallery version of these supplements, click the photo beneath each category.
- LICORICE. I particularly like this because liquids are more absorbable and this is very potent. This supplement is not recommended for those with high blood pressure. But if yours lowers, you may want to add it at that time and see how your body reacts. This formula is free of alchohol (which is usually grain derived and fermented) and other restricted ingredients.
- VITAMIN C. Most forms of vitamin C are synthetic and made from corn. My corn reaction restricted the use of vitamin c and when I found whole food supplements, the dosage was much lower than recommended to treat a disease. After much research I found 3 good sources that fit my needs to be AIP/Allergen free and to also get the job done. It was a bonus that they were whole food and therefore would be better for me in the long term.
- I used this ascerola cherry powder for high doses but then found it contained tapioca (which is a gluten cross reactive but you may not be sensitive to this)
- I then found this brand of ascerola cherry powder which is without additives but it was not as economical.
- I landed on Garden Of Life Vitamin C for a maintenance dose. My dosages are explained below. You will see this in every category for good reasons but it helps support the adrenals and heal them also.
- ADREN-PLUS. This is a blend of herbs sold at doctor’s offices and is pharmaceutical strength. It is also standardized to be consistent.
- ENERGY AND VITALITY BLEND . This blend by Gaia Herbs gives you energy throughout the day without the crash. It is made with adaptogens so unlike coffee or energy shots, it won’t cause you to be even more tired later. I was concerned about the small amount of caffeine because I tend to get tired if I have too much caffeine (due to its stress on my adrenals) but I have taken this for an extended period of time with no such negative experiences. Nor have I built a “tolerance” to it, whereas even the lowest dose of caffeinated drinks only helps me for a week before it is no longer helpful.
- B-12. This vegan friendly formula is also paleo friendly. I don’t remember what the company told me it was derived from but I remember being pleasantly surprised it was not derived from a grass, seed, grain or coal-tar. It also had no allergenic ingredients or those derived from them. This helps with methylation.
- SPIRULINA. The author recommended this brand because it was Hawaiian and apparently that is better. I don’t remember why but I’m guessing it has to do with contaminants.
- VITAMIN C. See the supplements listed above. Vitamin C is a chelator and can help get rid of metals. For that reason, at high doses (which are great for the immune system) it can also chelate necessary minerals. For that reason, I added lemon and sea salt to my vitamin c water both for taste and to replace minerals while I temporarily did higher doses. It seemed to help.
- VITAMIN C. I’m sure you see that this is a no brainer for immune support and have already read the options above. For the dosing, see below.
- LYSINE. This amino acid is routinely used in the treatment of Epstein barr and related viruses. I knew a doctor that recommended taking 1000 mg of this to treat mono so I started there. I would not recommend exceeding the directions on the bottle unless directed by a medical professional.
- RED ALGAE. This is a potent anti-viral. The link will take you to several brands, but I can only attest for Solaray and Pure Planet brands but wanted to give you choices in quality. This herb will also potentially effect thyroid so use responsibly. My thyroid likes it, for what that is worth.
For the above supplements, I took what was recommended on the bottle (except for the vitamin C). For the Vitamin C, I took 5000 mg daily until I felt great and then reduced to 1000 to 2000 mg per day per the recommendation from Dr. Susan Blum in her Immune System Recovery Book. For daily support I felt confident taking only 500 mg but increase it if I start to feel run down or need extra support. As for the high dosing, there is a lot of research on high dosing vitamin c but the original research was not done using synthetic vitamin c and this could effect the affects on the body and side effects and effectiveness (phew, that was a lot of “effect”!). I do recommend taking a whole food supplement whenever possible. I also do not recommend high dosing unless under the recommendation of a medical professional. It could lead to mineral deficiencies, as I mentioned below.
The parts that made the biggest difference for me. (coming from AIP/Wahl’s Paleo- which had already improved my health dramatically)
- Adding fruits to my diet gave me a nutritional and energetic burst.
- High dosing vitamin c made the biggest difference in my not feeling sick all the time.
- Vitamin C, if you notice from my supplements above, works on al 3 categories (immune, detox and adrenals). It also heals the gut. Too much vitamin C can cause a loss of minerals (because it is a chelator).
- When I was taking higher doses, I became more thirsty ( a sign of a loss of minerals/electrolytes) so I added lemon and sea salt to my ascerola cherry powder to replace minerals. It seemed to keep me from being so thirsty.
- After detox/ juice fast days, I sometimes would get energy the next day. I noticed better digestion on these days. I noticed detox symptoms on these days (indicating that I had something to detox). I had changes in my skin after a while.
- Doing a juice for breakfast and mid morning snack increased my nutrient intake and improved my hair and nails.
- By using “cooling” or “warming” foods in my juices I could influence my body temperature. This gave me control over my hot flashes (we think they are from thyroid or POTs, no one can tell me for sure) and temperature control as a result of my hashimotos.
- Pacing myself. I got stronger as time went on but I will always have to listen to my body to keep it strong so it can win the fight over and over again. Taking a break when I need increases my productivity and the duration of how long I can go. (The mental clarity ain’t so bad either)
- I have enough energy to work full time, workout (I’m working my way up and am gaining strength again), clean my house and get dressed (with makeup and hair!) and have time for my family. Before I was lucky if I brushed my teeth and ate in the same day.
- I have more moisture in my body.
- I can enjoy sex again and an improvement in my sex drive
- My hair is thicker and my nails are stronger
- I am able to workout more, harder and have increased both my strength and the time of my workouts, modestly. I heal quicker from my workouts.
- I no longer feel sick and tired ALL THE TIME.
- After 20 years (or more) of chronic adrenal fatigue, I no longer suffer from the chronic fight for energy and productivity in the morning. I can get up!
- My blood pressure has improved.
- My heart rate has improved.
- My joy in life has improved
The Take Away
If there is one thing that my research and training has taught me is that each body is bioindividual. Some do better with more meat and some do better with less. Some are effected by low nutrients more than others. One person’s cure is another’s poison. What worked for me may not be your exact protocol and for some, a more strict one or one with less fruit but more starchy vegetables may be the answer. But what works for another may be a good starting point.
If Paleo/AIP did not work well for you, then I encourage you to try Anthony’s protocol as a starting point. Maybe the vegan version of this will be good to your body.
But if Paleo/AIP worked well for you but you need a little more to get to where you feel great (I DO FEEL GREAT!) then my protocol may be a good starting point instead. However, which foods you need to focus on may be different for your individual situation. What nutrients your body needs may be slightly different. What methods you use to detox may be different. What you need to detox from may differ also. But I encourage you to start here and explore your body’s differences: Modify this to your body by reading the resources and being methodical about trying new things and examining how your body reacts to them. Question everything and explore alternative theories, no matter how wild they seem to be. Trust your instincts to guide you and your body to tell you what it needs. And good luck on your own crazy journey. If you have any questions or comments, or want to shoot a comment back to tell me how you modified this to make it work for your body, feel free to comment below in the box provided. I’d love to hear from you.
The Paleo Approach by Sarah Ballantyne
The Wahls’ Protocol by Dr. Terry Wahls
The Medical Medium by Anthony Willams
Life Changing Foods by Anthony Williams.
- Medical Medium by Anthony Williams
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