Welcome to Part 3. If you are still following along with me, then thank you. If you'd like to get caught up you can read Part 1 and Part 2 first. At this point we knew we were heading in the right direction. It was obvious that my autoimmune system was on overdrive triggering my MCAS, and now the hunt was on to figure out what the culprit could be.
Life works in really unexpected and wonderful ways, and this next part of the story was no exception. Through a friend I had been guided to a M.D who is an Integrative Doctor and also works with Lyme patients. I really felt like it was time for a pair of fresh eyes to take a look at me as a whole. I had been feeling like this for a while, and it's not because my current Doctor isn't incredible (because he is), but because I believe in trusting your gut & my gut said this was right. It was truly serendipitous how I met this Doctor (I'll call her Dr. A), and it was a series of perfect moments that got me there. She shared my same vision and values & I admired her "never say never" mentality. If you ever feel discouraged or healing feels out of reach, she's the kind of person you would want in your corner reminding you that the words "no" and "never" don't exist in her vocabulary. If there is a will there is a way. To top it off her wealth of knowledge is incredible (especially with taking genetics into account).
During my first appointment Dr. A she took a look at my medical files and genetics, took my history, and asked many questions. First things first she got me started on some supplements to help my methylation & cell detox. I have some genetic mutations which make things a bit tougher in terms of detox & getting the right supplements that work with my body. If anyone is familiar with HLA, MTHFR & COMT mutations, they are tricky and tedious formulations to work with. Each of the 3 play off of one another and it's essentially like solving a giant Rubix Cube. In fact I have tried and failed with a few "genetic experts" in finding a good balance for cell detox etc. Dr. A had complete ease decoding it all, and that my friends was a blessing. The other thing she suspected was that I was dealing with a neurotoxin and strongly suspected it to be mold.
Mold... I don't even know where to start on this topic. I have avoided exploring the idea of mold exposure with great resistance because I had a terrible experience with black mold in my work place (circa 2008) that was intense. The fact that I have the HLA mutation means that genetically I can't detox out mold biotoxins the way most people can. These biotoxins stay, they linger, and they mess with the body. The idea of thinking or accepting that my home could have mold, and the thought of what that would mean for me was just too much. My first knee jerk reaction was "No, absolutely not. It's not possible!" But once I took a real assessment of my symptoms and where I was at, my rational side kicked in and I knew I had to at least explore the hypothesis.
So much has changed in the world of biotoxin illness testing in the last 5 years. There are now really accurate markers in blood work that can point toward the presence of biotoxins and mold. It used to be limited to a urine test that detected a few mold mycotoxins, which was often unreliable. But now thanks to the pioneering research of some incredible Doctors they can get very specific. I first had a VCS eye test done, and boy did I fail that. I'm talking, complete big ole capital F. The VCS (Visual Contrast Sensitivity test) is a very specific test for mold, because the toxins they create mess with a specific part of the brain which will make this test impossible to pass. It's a great first line indicator if there is an issue, and I'm not going to lie, it wasn't too reassuring to fail it. Next up was blood work. MSH, C4a, Veg-F, TGF Beta 1, and MMP-9 to name a few. Each of these are specific markers in the blood which will either be suppressed or elevated at the presence of mold biotoxins.
The results started to roll in and one by one each test came back abnormal. Some markers can tell you if it's a chronic (long term or old) exposure, and those came back first. So this told us that yes I am dealing with biotoxins and have been for a long time. However the tests which would tell us if it's a current issue were still pending. These took the longest, and we waited with baited breath. When they came back and my TGF Beta 1 was at 14,000 (the highest range is 2300) my heart sank. I didn't know what to feel, it was such a jumble of emotions. I think it took 2 weeks to really process and accept what the lab work said. I've learned that I can't rush my feelings, and I need to feel the fear, disappointment & uncertainty in order to gather my strength and move into the action stage.
Dr. A said that with my test results being what they were, it's an absolute wonder that I am still functioning as well as I am. Looking solely at the blood work you'd think I was a character on the Walking Dead (ha). Truly, that gave me pause. In that moment I realized how much I under-appreciate my body. I am guilty of feeling like my body fails me, but truthfully it's pushing and fighting through SO much each day, and through this I was reminded of my strength. Every ounce of me is a fighter & as much as I knew that before, I certainly know it now.
Circling back to what I said about God putting people in my life at the right moments, He knew it was the right moment to uncover this missing piece. In all my years on this journey I had never once investigated the possibility of mold exposure or what role biotoxins might play. I say that now was the right time because I finally have this incredibly wise Doctor with a wealth of knowledge on the topic, and from that perspective the timing could not have been better. I mention timing for a second reason as well, because even 3 years ago there was only 1 option for mold. You have to practically tear your house apart to find the source (we have 0 visible mold), and remediation is grueling. You have to evacuate the home for months, they use toxic chemicals & you lose most everything due to mycotoxin exposure. It is an absolute nightmare to even fathom. Dr. A had a mold issue herself recently and recommended an all natural gentle remediation that uses a natural enzyme (not harsh chemicals) to treat the home. They can get into the walls and do not require any demolition (unless you have to do re-piping due to an existing leak etc), it take 4-5 hours to fully treat & you can go back to your house the same day. This will all take place in the coming weeks and I will do a detailed post on how it worked out.
We did ERMI testing & found elevated values of mold on the first 2 floors and very high values in our finished basement. The scale is -10 up to 20. For someone like myself with low MSH levels I need a 0 to -2 range to be able to recover from biotoxin illness. The basement was an 11, and that's incredibly high in the ERMI world. And that's with ZERO visible mold. At this point we don't even know where it's coming from, and until the home inspection it will remain a mystery. Our home is relatively newly built, it hasn't had any major water damage, and it looks pristine. I will say that I have read a plethora of statistics about mold in homes, and many of them echo the same statistic that about 50% of homes in America have enough mold to produce symptoms. If that blows your mind trust me you are not alone.
So, through the many many months we have ended up here with a very clear answer. Although these last 3 posts were way more detailed than my usual update posts there were many reasons for me disclosing so much information. For one, it's important to see just how much time and effort goes into developing a treatment plan and making steps. For us to land on the conclusion of mold illness it took about 5 months total. From all the blood work, the waiting, the tests, more waiting, the Doctor's appointments, and even more waiting, it really adds up. 2016 has fully been spent healing from C. Diff and figuring out this next piece of my puzzle. With a chronic illness people sometimes wonder where all the time goes. It's a totally valid question, and I hope that although this was just a taste, perhaps it could be a useful explanation. I also wanted this 3 part series to encourage those who feel they hit a plateau or don't quite know where to go next. This was my blueprint, and yours may look very different, but never stop looking and searching until you feel well. It might take months, and it might lead you to many dead ends before you hit the finish line, but ultimately it is all worth it.
The plan going forward is to first remediate the home, and then get started on a comprehensive mold and biotoxin rehabilitation. I will talk more about this as they occur and I can share details. Thank you for following along on my health update, and it is my hope that in the coming months and year I will have more uplifting health updates making great strides.
xoxo,
Christina
Life works in really unexpected and wonderful ways, and this next part of the story was no exception. Through a friend I had been guided to a M.D who is an Integrative Doctor and also works with Lyme patients. I really felt like it was time for a pair of fresh eyes to take a look at me as a whole. I had been feeling like this for a while, and it's not because my current Doctor isn't incredible (because he is), but because I believe in trusting your gut & my gut said this was right. It was truly serendipitous how I met this Doctor (I'll call her Dr. A), and it was a series of perfect moments that got me there. She shared my same vision and values & I admired her "never say never" mentality. If you ever feel discouraged or healing feels out of reach, she's the kind of person you would want in your corner reminding you that the words "no" and "never" don't exist in her vocabulary. If there is a will there is a way. To top it off her wealth of knowledge is incredible (especially with taking genetics into account).
During my first appointment Dr. A she took a look at my medical files and genetics, took my history, and asked many questions. First things first she got me started on some supplements to help my methylation & cell detox. I have some genetic mutations which make things a bit tougher in terms of detox & getting the right supplements that work with my body. If anyone is familiar with HLA, MTHFR & COMT mutations, they are tricky and tedious formulations to work with. Each of the 3 play off of one another and it's essentially like solving a giant Rubix Cube. In fact I have tried and failed with a few "genetic experts" in finding a good balance for cell detox etc. Dr. A had complete ease decoding it all, and that my friends was a blessing. The other thing she suspected was that I was dealing with a neurotoxin and strongly suspected it to be mold.
Mold... I don't even know where to start on this topic. I have avoided exploring the idea of mold exposure with great resistance because I had a terrible experience with black mold in my work place (circa 2008) that was intense. The fact that I have the HLA mutation means that genetically I can't detox out mold biotoxins the way most people can. These biotoxins stay, they linger, and they mess with the body. The idea of thinking or accepting that my home could have mold, and the thought of what that would mean for me was just too much. My first knee jerk reaction was "No, absolutely not. It's not possible!" But once I took a real assessment of my symptoms and where I was at, my rational side kicked in and I knew I had to at least explore the hypothesis.
So much has changed in the world of biotoxin illness testing in the last 5 years. There are now really accurate markers in blood work that can point toward the presence of biotoxins and mold. It used to be limited to a urine test that detected a few mold mycotoxins, which was often unreliable. But now thanks to the pioneering research of some incredible Doctors they can get very specific. I first had a VCS eye test done, and boy did I fail that. I'm talking, complete big ole capital F. The VCS (Visual Contrast Sensitivity test) is a very specific test for mold, because the toxins they create mess with a specific part of the brain which will make this test impossible to pass. It's a great first line indicator if there is an issue, and I'm not going to lie, it wasn't too reassuring to fail it. Next up was blood work. MSH, C4a, Veg-F, TGF Beta 1, and MMP-9 to name a few. Each of these are specific markers in the blood which will either be suppressed or elevated at the presence of mold biotoxins.
The results started to roll in and one by one each test came back abnormal. Some markers can tell you if it's a chronic (long term or old) exposure, and those came back first. So this told us that yes I am dealing with biotoxins and have been for a long time. However the tests which would tell us if it's a current issue were still pending. These took the longest, and we waited with baited breath. When they came back and my TGF Beta 1 was at 14,000 (the highest range is 2300) my heart sank. I didn't know what to feel, it was such a jumble of emotions. I think it took 2 weeks to really process and accept what the lab work said. I've learned that I can't rush my feelings, and I need to feel the fear, disappointment & uncertainty in order to gather my strength and move into the action stage.
Dr. A said that with my test results being what they were, it's an absolute wonder that I am still functioning as well as I am. Looking solely at the blood work you'd think I was a character on the Walking Dead (ha). Truly, that gave me pause. In that moment I realized how much I under-appreciate my body. I am guilty of feeling like my body fails me, but truthfully it's pushing and fighting through SO much each day, and through this I was reminded of my strength. Every ounce of me is a fighter & as much as I knew that before, I certainly know it now.
Circling back to what I said about God putting people in my life at the right moments, He knew it was the right moment to uncover this missing piece. In all my years on this journey I had never once investigated the possibility of mold exposure or what role biotoxins might play. I say that now was the right time because I finally have this incredibly wise Doctor with a wealth of knowledge on the topic, and from that perspective the timing could not have been better. I mention timing for a second reason as well, because even 3 years ago there was only 1 option for mold. You have to practically tear your house apart to find the source (we have 0 visible mold), and remediation is grueling. You have to evacuate the home for months, they use toxic chemicals & you lose most everything due to mycotoxin exposure. It is an absolute nightmare to even fathom. Dr. A had a mold issue herself recently and recommended an all natural gentle remediation that uses a natural enzyme (not harsh chemicals) to treat the home. They can get into the walls and do not require any demolition (unless you have to do re-piping due to an existing leak etc), it take 4-5 hours to fully treat & you can go back to your house the same day. This will all take place in the coming weeks and I will do a detailed post on how it worked out.
We did ERMI testing & found elevated values of mold on the first 2 floors and very high values in our finished basement. The scale is -10 up to 20. For someone like myself with low MSH levels I need a 0 to -2 range to be able to recover from biotoxin illness. The basement was an 11, and that's incredibly high in the ERMI world. And that's with ZERO visible mold. At this point we don't even know where it's coming from, and until the home inspection it will remain a mystery. Our home is relatively newly built, it hasn't had any major water damage, and it looks pristine. I will say that I have read a plethora of statistics about mold in homes, and many of them echo the same statistic that about 50% of homes in America have enough mold to produce symptoms. If that blows your mind trust me you are not alone.
So, through the many many months we have ended up here with a very clear answer. Although these last 3 posts were way more detailed than my usual update posts there were many reasons for me disclosing so much information. For one, it's important to see just how much time and effort goes into developing a treatment plan and making steps. For us to land on the conclusion of mold illness it took about 5 months total. From all the blood work, the waiting, the tests, more waiting, the Doctor's appointments, and even more waiting, it really adds up. 2016 has fully been spent healing from C. Diff and figuring out this next piece of my puzzle. With a chronic illness people sometimes wonder where all the time goes. It's a totally valid question, and I hope that although this was just a taste, perhaps it could be a useful explanation. I also wanted this 3 part series to encourage those who feel they hit a plateau or don't quite know where to go next. This was my blueprint, and yours may look very different, but never stop looking and searching until you feel well. It might take months, and it might lead you to many dead ends before you hit the finish line, but ultimately it is all worth it.
The plan going forward is to first remediate the home, and then get started on a comprehensive mold and biotoxin rehabilitation. I will talk more about this as they occur and I can share details. Thank you for following along on my health update, and it is my hope that in the coming months and year I will have more uplifting health updates making great strides.
xoxo,
Christina
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