One summer, I experienced a very difficult setback in my healing journey from chronic Lyme disease. The months of July through October were perhaps the most difficult four months of my life. The reason? I was exposed to black mold in my home after a poor remediation job, and around the same time, had received some platelet-rich plasma therapy injections in my lower back, which caused an adverse reaction in my nervous system. These two things simultaneously set off a cascade of inflammation and horrific MS-like symptoms.
The inflammation incapacitated me and hindered my ability to drive, work, and function on a basic level. Dizziness, brain fog, severe depression, fatigue, numbness, a lack of coordination and tremors in my extremities, sleep apnea, chest pain, POTS, tachycardia and disorientation were just some of the symptoms that I endured. Most days, I couldn’t get out of bed before 5 PM, and was only able to get up and about for a few hours in the evening.
Prior to this, I had been doing pretty well with my Lyme disease symptoms, so the experience was disconcerting.
Many people who are suffering from Lyme, or who have battled it in the past—as I have, are also susceptible to sickness from mold toxins. Increasingly, Lyme-literate doctors are discovering mold to be a factor that causes illness in their patients. Lyme tends to make people more susceptible to environmental illnesses and allergies of all kinds, but environmental factors can also cause latent Lyme infections to become active.
Regardless, both must be treated if they are causing symptoms— although the symptom picture can be hard to unravel, since mold and Bartonella infections can cause near identical symptom pictures. In my case, circumstances, doing a test through RealTime Labs, and visiting a Lyme and mold-literate doctor helped me to understand what I was dealing with.
The good news is—after consulting with a variety of practitioners, I finally found one who knew what was going on in my body. The injections and mold had somehow simultaneously inflamed my spinal cord and brain, and caused my immune system to overreact.
Because mold is such an important issue in many with Lyme, many of the doctors featured in my book, New Paradigms in Lyme Disease Treatment: 10 Top Doctors Reveal Healing Strategies that Work share their strategies for healing the body from mold toxicity as part of a comprehensive Lyme disease treatment protocol. If you have a history of exposure to mold or water damage in your home or workplace, or simply suspect that you are mold-toxic, I highly recommend reading what these doctors have to say about mold diagnosis and treatment.
An Overview of Mast Cells
In addition to prescribing me some remedies for mold and mycotoxins, my doctor gave me a couple of natural supplements and a medication for mast cell activation disorder (MCAD), or systemic mastocytosis, which he suspected was caused by the mold. MCAD is a condition whereby the body releases an excessive amount of mast cells, which are immune cells that release histamine and cause inflammation in the body.
Like all immune cells, mast cells play an important role in immune function, by releasing wound-healing substances such as histamine and leukotrienes, but they can get out of control when the body is faced with chronic health challenges. MCAD can be caused by a variety of environmental insults (and may even be genetic, according to some sources), including mold toxicity, and in my case, it turned out to be an important cause of my symptoms.
I knew because the day after I took an anti-inflammatory medication called ketotifen that my doctor prescribed to me for the symptoms of mast cell activation—I was a new person in less than 48 hours. I’m still not healed, but I am able to function and work most days, and I no longer cry for hours daily. This little drug worked when dozens of other remedies and detox supplements did not, and literally reduced my symptoms by at least 50-60%, after months of intense suffering—in just under two days. A few of the symptoms, such as the chest pain and apnea—were completely eliminated.
Now, if I forget to take the medication, the severe symptoms come back full-fledged, because the root cause of the mast cell activation—which is the mold toxicity and whatever damage was done by the injections—hasn’t yet been fully dealt with, but the medication is helping me to function as I heal.
Unlike other commonly known antihistamines like Benadryl, however, ketotifen isn’t just a Band-Aid for symptoms, and it isn’t anticholinergic; that is, it doesn’t block the neurotransmitter acetylcholine in the central and peripheral nervous system. Some antihistamines do this, and it is why drugs like Benadryl have been associated with Alzheimer’s and memory loss, since acetylcholine plays a vital role in memory and cognition.
Ketotifen seems to have a much safer side effect profile and in fact, may be healing to the body as a couple of doctors and pharmacists that I have spoken with believe that it actually resets mast cells in the immune system. However, this process can take many months, even a year or longer.
In any case, ketotifen has so far been for me one of those little miracles of medicine that has made a huge difference in my wellbeing. In addition to this, I have also been taking a couple of natural supplements that have been known to control mast cell activation; namely, quercetin and diamine oxidase (DAO), and enzyme derived from porcine kidney to breakdown histamine.
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I take my medication, quercetin and DAO 30 minutes before meals, since certain foods trigger histamine release, and taking these supplements before food helps to control histamine and thereby heal the gut.
A number of other natural substances and medications have anti-histamine or histamine receptor blocking effects, as well, but not all of these drugs or remedies will work well for everyone. Like most things in medicine, treatment must be tailored to the individual.
According to Lawrence B. Afrin, MD, author of Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, some medications that can be used to treat MCAD include the antidepressant doxepin, tricyclic antidepressants and benzodiazepenes. I am not a fan of drugs that cause other problems in the body, so I would recommend asking your doctor about others, if you suspect MCAD to be a problem for you.
Dr. Afrin also notes the beneficial properties of quercetin and states that, “It seems to result in reduced production of inflammatory mediators (e.g., leukotrienes and histamine). It may also serve as an inhibitor of tyrosine kinases and other regulatory proteins of interest in activated mast cells.” He notes that quercetin chalcone may be better absorbed than other forms. By itself, quercetin wasn’t enough for me, but it may be a good start for some of you who are reading this (if you have MCAD). Other supplements with anti-histaminic properties, such as Vitamin C, may also be helpful.
Mast cell activation disorder (MCAD) is not rare. In fact, it is now thought by some savvy doctors to be a major player in many chronic, degenerative diseases. For instance, in his book, Dr. Afrin lists at least a couple of hundred conditions that he suspects are at least indirectly due to MCAD. These include chronic fatigue syndrome and fibromyalgia. Lyme disease and mold are not listed, but a couple Lyme-literate doctors that I know believe that mold and Lyme can cause MCAD, and I can tell you from experience that it has been a major cause of the mess in my body that I had to deal with this past summer.
In any case, I have learned enough to believe that MCAD may be a major player in Lyme and mold illness, and that if you suffer from these conditions, you may want to seek out a physician who understands MCAD and who can prescribe a trial treatment to determine whether, in fact, it is a part of your symptom picture. Trust me, if MCAD is a problem for you, you will want to know.
In the meantime, and as I continue my recovery, I am thankful for this relatively recent discovery in medicine, which has provided some doctors with a fantastic new tool for helping their patients- and for people like me- new answers and hope.
This article was first published on ProHealth.com on November 15, 2016 and was updated on January 30, 2019.
Connie Strasheim is the author of multiple wellness books, including three on Lyme disease. She is also a medical copywriter, editor and healing prayer minister. Her passion is to help people with complex chronic illnesses find freedom from disease and soul-spirit sickness using whole body medicine and prayer, and she collaborates with some of the world’s best integrative doctors to do this. In addition to Lyme disease, Connie’s books focus on cancer, nutrition, detoxification and spiritual healing. You can learn more about her work at: ConnieStrasheim.
Afrin, L. 2016. Never Bet Against Occam. Bethesda, MD: Sisters Media, LLC.
Frieri, M. Patel R, Celestin J. Mast cell activation syndrome: a review.
Curr Allergy Asthma Rep. (2013 Feb);13(1):27-32. doi: 10.1007/s11882-012-0322-z.
Mast Cell Activation Disorder (MCAD), Chronic Illness, and its Role in Methylation. Genetic Genie. Accessed on Nov. 5, 2016 from: http://geneticgenie.org/blog/2013/01/31/mast-cell-activation-disorder-mcad-chronic-illness-and-its-role-in-methylation/.
Valent, P. Mast cell activation syndromes: definition and classification.
Allergy. (2013 Apr);68(4):417-24. doi: 10.1111/all.12126. Epub 2013 Feb 15.