It's been almost 10 years since the onset of the my chronic Lyme disease symptoms following a car accident in 2008 and I can't believe the roller coaster this journey has taken me on! Looking back, there were a few key discoveries and turning points that really shifted my healing into the next level and allowed me to make significantly more progress.
One of those things was figuring out that I was suffering from Mast Cell Activation Syndrome (MCAS). Mast cells are a type of immune cell that are present in almost all tissues in the human body but especially in the gut lining, connective tissue, cardiovascular system, respiratory system, and nervous system. They are part of an allergic response used to protect us from injury or threat. When mast cells encounter a "threat or perceived threat" they release chemical mediators like histamine, leukotrienes, interleukins, prostaglandins, and cytokines. These mediators are like signals to the immune system - you can think of them like a fire alarm, letting the fireman know its time to fight a fire. The mediators are a signal to the immune system that there is threat or injury that needs healing or addressing. We all need mast cells in times of allergic response or injury to heal, however in MCAS, your mast cells are hyper-stimulated and over-activated, releasing large amounts of mediators and setting the stage for chronic immune activation and autoimmunity along with a host of pretty serious multi-systemic symptoms. My MCAS manifested as extreme body pain, even after 3 years of Lyme disease treatment my pain wasn't getting any better, in fact, it was getting worse!! I also found myself becoming very sensitive and reactive to foods, smells, chemicals, EMF's, and even most of the medications and supplements that were supposed to be helping me feel better. I would have constant migraine headaches, my heart would race and my body would feel hot and in terrible pain after I would eat a meal. I was down to like 5 or 6 foods that I could eat without having a reaction. It was incredibly frustrating and I felt so stuck!! When I started to get rashes all over my body (which I had never had prior), my new functional doctor at the time suspected MCAS and we added some anti-histamine and mast cell stabilizers into my protocol. Her suspicion was confirmed when after a month or so, I slowly started to stabilize, my pain dropped a noticeable amount, and I was having less migraines. This is when I took a deep dive into researching and understanding not only the manifestations of MCAS and how to get the immune system to calm down and act normally but also identifying the root causes behind this type of immune activation. The protocols I've implemented based on my research have helped me to accelerate my recovery and live a much more functional life while I continue to heal from chronic Lyme disease. I find that MCAS is a very common condition in the chronically ill and especially so for patients who have not responded to standard treatment protocols well. I've now worked with dozens and dozens of people who suffer from this type of immune dysfunction and I want to help you as well! So how do you know if MCAS might be playing a role in your illness? Here are some clear symptoms to look for... 9 Signs You May Be Dealing with MCAS or Histamine Intolerance:
How Does MCAS Differ from Histamine Intolerance? Histamine intolerance is a term that you may have heard more commonly than MCAS and is typically categorized as someone who is histamine sensitive specifically due to a genetic mutation in which they have a deficiency in the enzyme (DAO) needed to break down histamine in the gut. This causes histamine levels build up and people start reacting to high histamine foods or to environmental stimulus easily. Excess histamine is the main problem here. In MCAS, the mast cells are being over activated which is causing the release of more than just histamine but other mediators as well like cytokines, leukotrienes, interleukins, and prostaglandins. Testing & Treatment to Consider for MCAS: Standard testing includes serum and urine analysis inlcuding: Serum Tryptase, Serum ChromograninA, Whole Blood Histamine (chilled plasma) Heparin (chilled plasma), N-Methylhistamine (24hr urine), and Prostaglandin F2alpha (24hr urine). But again, these tests are not very accurate and will often give a false negative picture. That's why its a clinical diagnosis based on the presence of the symptoms above in at least two body systems and a positive response or symptom reduction with anti-histamines and/or mast cell stabilizers. Next week's blog post will be spent discussing the anti-histamine and mast cell stabilizer options along with tips on how to find the right combination of medications/supplements to help reduce over-active mast cells and get symptom relief. I will also share important steps to take, outside of medications and supplements, that will help to reduce your mast cell reactions and help you get your life back! I look forward to catching you all next week! Thanks for tuning in! Billie P.S. - You may also be interested in my Free, Live Webinar, Mast Cell Activation Solutions, which is scheduled for Saturday, 9/29 at 10:30am MT. Click the image below to learn more or sign up.
5 Comments
Susan Dorn
4/17/2022 07:59:45 am
Trying to help daughter. Ongoing issues,nerves,pain, mainly joints, primarily hips and burning stinging nerve pain in hips etc…rash on stomach, hives on face,
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Terri Russell
8/24/2022 09:20:19 pm
I was in the same place for 7 months and decided one day to do a 180 on everything I was eating and return to the blood typs diet in extreme, Carnivore diet. And I started getting well within 12 hrs. I am about 85% healed but still have some lethargy. I upped my zinc and B complex. I am noticing that the face bumps are drying up. I am O blood type which is the carnivore type I am so grateful !
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Lena Fox
4/30/2024 01:43:20 pm
I have been having issues with my tryptase levels being elevated to a 42. I am not high enough to have leukemia but I have had many of the symptoms you describe above. I am on Montelukast, Levocetrizine, and Duluxetine for nerve pain. All have improved my symptoms. I think I may have MCAS based on my symptoms.
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12/9/2024 02:12:04 pm
I have been exposed to mold,treating.Now my right nostril has been running for months,also my lips severely chapped and peeling for almost 3 months.Burning tongue with almost all foods.I have been taking benadryl for years.Did not know until recently how bad withdrawal symptoms can be if trying to get off.Cant do it right now
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Billie Shellist, FDN-P
I practice functional nutrition, an approach that allows me to look at your entire health history and help you find the "root causes" of your chronic health complaints. This cuts out the trial and error process and helps you get real symptom relief and resolution! Food is medicine and knowledge is power -I hope you enjoy my anti-inflammatory recipes which are gluten, dairy, and soy free as well as very low grain and sugar. If you'd like to heal from the root cause(s) of your chronic symptoms, try starting with a complimentary 15-minute consultation. Click here to request your free session. |