- M
I need the support of my community to allow me to go to a functional medicine clinic to address the root causes of my illness.
For several years I’ve been struggling with intense chronic fatigue, which intensified this summer after I moved into an apartment I later learned had toxic mold in it. I started developing intense food sensitivities and gut issues, my chronic fatigue worsened, my nervous system became much more dysregulated, and my capacity to engage in relationships and pursue my curiosities became much more limited. With the help of an herbalist friend listening to my symptoms and helping me piece together the puzzle pieces, I learned I had many of the symptoms of mast cell activation syndrome (MCAS)—histamine intolerance, fatigue, brain fog, skin rashes, POTS, etc. It typically takes people with MCAS years to get an official diagnosis within allopathic medicine, and within that model treatment options consist of pharmaceutical anti-histamines to ameliorate symptoms, but they never get to the root of what’s causing the illness in the first place. Most typical diagnostic testing covered by insurance does not show anything out of normal ranges for MCAS patients, which is why my primary doctor pretty much told me my labs were normal and that she didn’t have anything to offer me.
I started researching ways to get to the root of the MCAS symptoms and chose to start working with a functional nutritionist who specializes in histamine issues. With the nutritionist, I was able to identify dietary and supplement changes with which I could avoid the worst of my food reactions. The nutritionist also recommended I do a mycotoxin test to see if mold exposure was causing my MCAS symptoms and it came back with the highest results she’d ever seen in one of the mold categories, Citrinin. According to the test, the safe level of citrinin is under 25ng/g, and I have 139ng/g in my system.
It turns out I am part of the 25% of the population who are highly sensitive to mold and unable to detox from it without significant support. My supposition is that I have been accumulating mold toxicity since childhood, and that the four months in the highly toxic apartment building put me over the edge into a full blown Chronic Inflammatory Response Syndrome (CIRS) that caused the MCAS and my chronic fatigue symptoms.
My life has totally changed from this mold illness. I have had to go down to half time levels with my grad school program and extend the timeline of my studies with a disability accommodation. I am barely able to exert the energy to work 6-11 hours a week as a PCA for my partner, who has muscular dystrophy and also struggles with mold illness but thankfully is on a disability waiver program that can cover his treatment.
Although I am blessed that I was able to move out of the toxic mold apartment into a much more healthy home from which I can begin healing, even being out of the toxic environment, the mold toxicity inside of me is still making it difficult to function on a daily basis. I have almost continual fatigue, brain fog, difficulty word finding, mood swings, and chronic pain from gut and hormonal issues. In addition, I’ve spent the past three weeks sick with a virus (thankfully the covid test came back negative so at least it's not that) and my immune system has been so compromised by CIRS that I’m feeling afraid I’ll be stuck as a long-hauler with additional fatigue and respiratory symptoms on top of what I’m already dealing with. Quite honestly, this last week of dealing with coughing, stabbing gut pain, and muscle spasms in addition to my daily life symptoms has put me over the edge into an intense fear response and realization that I really do need a holistic medical team supporting me through this as my insurance-covered primary is doing zlich.
I know I need a level of support to heal from this illness beyond the options available through allopathic medicine. I was able to find Synapse Center for Health and Healing, a functional medicine clinic with the only nurse practitioner in Minnesota certified to treat CIRS. Unfortunately, the clinic is out of pocket and very expensive—I will probably be looking at over $4000 to pay for my treatment. I’m currently very low income, making less than $16,000 a year (a combination of unemployment and PCA hours) and my savings have been completely depleted by the need to make a costly move out of the mold toxic building and the expensive supplements and diet I’ve needed in order to maintain a basic level of functioning. I need the community’s help to make it possible to go to Synapse. I’m hoping to raise $2,700 in donations to make up the funding gap after the $200 I can put towards a monthly installment plan and maxing out my credit card.
I want to acknowledge that making this request for support feels complex at such a difficult time when so many people are under so much financial and survival stress right now. Even being low income and chronically ill, I have a deep awareness of the systemic privilege that moves through my life in being able to receive income and be housed and fed right now.
One of the main metaphors of my cultural healing research has to do with the mycelium, the fractal entanglement of relationship that life emerges from. Even in the midst of this illness, I’ve noticed a life-poetry in the way that mycelium has entangled deeper in my body and slowed me down to the pace of the present movement. As I heal from the mold toxicity, I also want to hold awareness of what these mycological beings have to teach me. I fully intend to pay this healing forward in the bone-knowing that my healing is connected to the mycelium of wider relationship rippling out from my life.
For several years I’ve been struggling with intense chronic fatigue, which intensified this summer after I moved into an apartment I later learned had toxic mold in it. I started developing intense food sensitivities and gut issues, my chronic fatigue worsened, my nervous system became much more dysregulated, and my capacity to engage in relationships and pursue my curiosities became much more limited. With the help of an herbalist friend listening to my symptoms and helping me piece together the puzzle pieces, I learned I had many of the symptoms of mast cell activation syndrome (MCAS)—histamine intolerance, fatigue, brain fog, skin rashes, POTS, etc. It typically takes people with MCAS years to get an official diagnosis within allopathic medicine, and within that model treatment options consist of pharmaceutical anti-histamines to ameliorate symptoms, but they never get to the root of what’s causing the illness in the first place. Most typical diagnostic testing covered by insurance does not show anything out of normal ranges for MCAS patients, which is why my primary doctor pretty much told me my labs were normal and that she didn’t have anything to offer me.
I started researching ways to get to the root of the MCAS symptoms and chose to start working with a functional nutritionist who specializes in histamine issues. With the nutritionist, I was able to identify dietary and supplement changes with which I could avoid the worst of my food reactions. The nutritionist also recommended I do a mycotoxin test to see if mold exposure was causing my MCAS symptoms and it came back with the highest results she’d ever seen in one of the mold categories, Citrinin. According to the test, the safe level of citrinin is under 25ng/g, and I have 139ng/g in my system.
It turns out I am part of the 25% of the population who are highly sensitive to mold and unable to detox from it without significant support. My supposition is that I have been accumulating mold toxicity since childhood, and that the four months in the highly toxic apartment building put me over the edge into a full blown Chronic Inflammatory Response Syndrome (CIRS) that caused the MCAS and my chronic fatigue symptoms.
My life has totally changed from this mold illness. I have had to go down to half time levels with my grad school program and extend the timeline of my studies with a disability accommodation. I am barely able to exert the energy to work 6-11 hours a week as a PCA for my partner, who has muscular dystrophy and also struggles with mold illness but thankfully is on a disability waiver program that can cover his treatment.
Although I am blessed that I was able to move out of the toxic mold apartment into a much more healthy home from which I can begin healing, even being out of the toxic environment, the mold toxicity inside of me is still making it difficult to function on a daily basis. I have almost continual fatigue, brain fog, difficulty word finding, mood swings, and chronic pain from gut and hormonal issues. In addition, I’ve spent the past three weeks sick with a virus (thankfully the covid test came back negative so at least it's not that) and my immune system has been so compromised by CIRS that I’m feeling afraid I’ll be stuck as a long-hauler with additional fatigue and respiratory symptoms on top of what I’m already dealing with. Quite honestly, this last week of dealing with coughing, stabbing gut pain, and muscle spasms in addition to my daily life symptoms has put me over the edge into an intense fear response and realization that I really do need a holistic medical team supporting me through this as my insurance-covered primary is doing zlich.
I know I need a level of support to heal from this illness beyond the options available through allopathic medicine. I was able to find Synapse Center for Health and Healing, a functional medicine clinic with the only nurse practitioner in Minnesota certified to treat CIRS. Unfortunately, the clinic is out of pocket and very expensive—I will probably be looking at over $4000 to pay for my treatment. I’m currently very low income, making less than $16,000 a year (a combination of unemployment and PCA hours) and my savings have been completely depleted by the need to make a costly move out of the mold toxic building and the expensive supplements and diet I’ve needed in order to maintain a basic level of functioning. I need the community’s help to make it possible to go to Synapse. I’m hoping to raise $2,700 in donations to make up the funding gap after the $200 I can put towards a monthly installment plan and maxing out my credit card.
I want to acknowledge that making this request for support feels complex at such a difficult time when so many people are under so much financial and survival stress right now. Even being low income and chronically ill, I have a deep awareness of the systemic privilege that moves through my life in being able to receive income and be housed and fed right now.
One of the main metaphors of my cultural healing research has to do with the mycelium, the fractal entanglement of relationship that life emerges from. Even in the midst of this illness, I’ve noticed a life-poetry in the way that mycelium has entangled deeper in my body and slowed me down to the pace of the present movement. As I heal from the mold toxicity, I also want to hold awareness of what these mycological beings have to teach me. I fully intend to pay this healing forward in the bone-knowing that my healing is connected to the mycelium of wider relationship rippling out from my life.