Okay, so now that we got the Fry testing out of the way for co-infections (in Part 1) you might be wondering, "What else could you possibly have?" Well, this is where a plethora of other things come into the picture. Things like viral loads, parasites, autoimmune disorders, neurotoxin syndromes such as CIRS, heavy metal toxicity, things like Candida, and so much more. Oh yes, the layers of Lyme Disease have deeper roots than what meets the eye, and it's also why it's such tangled web to unweave and heal. Essentially when the body gets hit with something like Lyme Disease which compromises the immune system so deeply, it gives way for other things to take hold in the body (such as viruses, such as autoimmune conditions etc). That's not to say it's impossible, but just that it is a process which you have to take step by step and check off the boxes as you go along. Each of the items listed above can produce a handful of debilitating symptoms, so just because they are talked about along side of Lyme Disease, it doesn't make them less serious in nature. They all deserve the utmost attention and proper protocols.
As I had mentioned in my post from May, I was dealing with a lot of crazy heart symptoms which came to the surface, along with a flare of neurological symptoms, feeling exceptionally run down, feverish, exhausted, and battling migraines (among other things). I did a CSA and got a newly updated MRT food intolerance test done. These helped take the burden off of my body by not eating things that would cause more inflammation and pain in my system.
The next avenue of investigation for me based off of my symptoms was testing for MCAS. MCAS is short for Mast Cell Activation Syndrome. MCAS is an immunological condition in which mast cells inappropriately and excessively release inflammatory mediators, resulting in a range of body-wide symptoms. Primary symptoms include cardiovascular, gastrointestinal, neurological and respiratory problems. Patients with MCAS have a normal number of mast cells, but these mast cells do not function properly and are defined as "hyperresponsive." I would describe the mast cells as being trigger happy.. they explode and release in overwhelming quantities from the smallest (and sometimes even no) stimuli. Mast cells are a type of white blood cell which are found in various parts of the body and are part of the immune and neuroimmune system. Their role is to be protective agents, and when they are triggered they rapidly release vast amounts of histamine and other inflammatory agents. In low or normal levels this is okay. In someone with seasonal allergies the reason they are sneezing so much is due to mast cells releasing histamine, which in turn they take "anti-histamines" for. In the case of MCAS the mast cells in the entire body (not just the nasal passageway) are releasing inflammatory substances at a very high rate from the tiniest triggers. Symptoms include (but are not limited to):
Cardiovascular
-lightheadedness, dizziness, presyncope, syncope
-tachycardia, palpitations,
-hypertension
Gastrointestinal
-diarrhea, cramping, intestinal discomfort
-nausea, vomiting
-inflamed spleen & spleen pain
Psychological & Neurological
-brain fog, short term memory dysfunction, difficulty with recalling words
-headaches, migraines
Respiratory
-congestion, coughing, wheezing
Vision/Eyes
-ocular discomfort, conjunctivitis
Constitutional
-general fatigue and malaise
-food, drug, and chemical intolerances (especially fragrances)
-sense of being cold all the time
This seemed like the right next step because I had pretty much every single symptom listed above, and then some. I lived on Benadryl, various antihistamines, my inhaler, and anti-inflammatories. Even with all of that I was still struggling. One big thing that became necessary was to re-home our cat. This was one of the toughest things for me to do, but it had to be done. I have been allergic to cats since I was 5, but as long as Cali kept a bit of distance I used to tolerate her dander okay. But as things changed and my mast cells became an obvious issue I knew I would never get better with her around. Re-homing her was the right choice, but it gave me great sadness that it had to come to that. My health is priority #1, and I feel lucky that a friend was able to take her and has given her the moving loving home. So, among the sadness I am thankful for that.
As I had mentioned in my post from May, I was dealing with a lot of crazy heart symptoms which came to the surface, along with a flare of neurological symptoms, feeling exceptionally run down, feverish, exhausted, and battling migraines (among other things). I did a CSA and got a newly updated MRT food intolerance test done. These helped take the burden off of my body by not eating things that would cause more inflammation and pain in my system.
The next avenue of investigation for me based off of my symptoms was testing for MCAS. MCAS is short for Mast Cell Activation Syndrome. MCAS is an immunological condition in which mast cells inappropriately and excessively release inflammatory mediators, resulting in a range of body-wide symptoms. Primary symptoms include cardiovascular, gastrointestinal, neurological and respiratory problems. Patients with MCAS have a normal number of mast cells, but these mast cells do not function properly and are defined as "hyperresponsive." I would describe the mast cells as being trigger happy.. they explode and release in overwhelming quantities from the smallest (and sometimes even no) stimuli. Mast cells are a type of white blood cell which are found in various parts of the body and are part of the immune and neuroimmune system. Their role is to be protective agents, and when they are triggered they rapidly release vast amounts of histamine and other inflammatory agents. In low or normal levels this is okay. In someone with seasonal allergies the reason they are sneezing so much is due to mast cells releasing histamine, which in turn they take "anti-histamines" for. In the case of MCAS the mast cells in the entire body (not just the nasal passageway) are releasing inflammatory substances at a very high rate from the tiniest triggers. Symptoms include (but are not limited to):
Cardiovascular
-lightheadedness, dizziness, presyncope, syncope
-tachycardia, palpitations,
-hypertension
Gastrointestinal
-diarrhea, cramping, intestinal discomfort
-nausea, vomiting
-inflamed spleen & spleen pain
Psychological & Neurological
-brain fog, short term memory dysfunction, difficulty with recalling words
-headaches, migraines
Respiratory
-congestion, coughing, wheezing
Vision/Eyes
-ocular discomfort, conjunctivitis
Constitutional
-general fatigue and malaise
-food, drug, and chemical intolerances (especially fragrances)
-sense of being cold all the time
This seemed like the right next step because I had pretty much every single symptom listed above, and then some. I lived on Benadryl, various antihistamines, my inhaler, and anti-inflammatories. Even with all of that I was still struggling. One big thing that became necessary was to re-home our cat. This was one of the toughest things for me to do, but it had to be done. I have been allergic to cats since I was 5, but as long as Cali kept a bit of distance I used to tolerate her dander okay. But as things changed and my mast cells became an obvious issue I knew I would never get better with her around. Re-homing her was the right choice, but it gave me great sadness that it had to come to that. My health is priority #1, and I feel lucky that a friend was able to take her and has given her the moving loving home. So, among the sadness I am thankful for that.
This shows the role of Histamine in body-wide symptoms. Just 1 of the many things excreted by Mast Cells
So, back to MCAS. There are specific blood and urine tests which can be ran to diagnose this disorder. Since Mast Cells release the substances histamine, prostaglandin and leukotriene, these can be readily measured via a 24hr urine sample. PGD2, PGF2a and n-methylhistamine can also be checked via urine. In some cases if these show an elevation and the symptoms match up it will be a good first indicator. However, you have to go further with some blood work. Tests include: serum chromogranin A, plasma histamine, chilled plasma PGD2, and stat chilled plasma heparin. Shew, what a mouthful. Needless to say I had another month full of many prokes and prodes and tests galore. And what did we determine? I definitely have an issue with my mast cells, histamines, and an over abundance of inflammation throughout my body.
Now that we knew this was an issue, the next question was why it was happening. What is the cause, and what can be done about it? Unfortunately there isn't a ton of great info out there on the interweb about this topic. The consensus is that there are various supplements that can be tried, but ultimately its important to find the root cause to fix it. Otherwise it will just be like a band-aid holding up the dam and eventually it will become useless as the body adjusts. There are many different schools of thought on what the root cause could be. Some say genetic mutations are the underlying issue, others say infections or parasites are the cause, and the majority agree that it varies greatly by person but its likely a mix of a few different things.
Here I was, now knowing I had another clue, but not necessarily an answer. So guess what? It was back back to more testing, and more digging to continue to pin-point the root of my troubles. For now I will end Part 2 here and continue on with Part 3 in the next post.
xoxo,
Christina
Now that we knew this was an issue, the next question was why it was happening. What is the cause, and what can be done about it? Unfortunately there isn't a ton of great info out there on the interweb about this topic. The consensus is that there are various supplements that can be tried, but ultimately its important to find the root cause to fix it. Otherwise it will just be like a band-aid holding up the dam and eventually it will become useless as the body adjusts. There are many different schools of thought on what the root cause could be. Some say genetic mutations are the underlying issue, others say infections or parasites are the cause, and the majority agree that it varies greatly by person but its likely a mix of a few different things.
Here I was, now knowing I had another clue, but not necessarily an answer. So guess what? It was back back to more testing, and more digging to continue to pin-point the root of my troubles. For now I will end Part 2 here and continue on with Part 3 in the next post.
xoxo,
Christina
Sources:
1. http://www.mastattack.org/2014/10/mast-cell-mediators-recommended-testing-for-mcas-diagnosis/
2. https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome
3.http://www.dysautonomiainternational.org/blog/wordpress/a-tale-of-two-syndromes-pots-and-mcas/
1. http://www.mastattack.org/2014/10/mast-cell-mediators-recommended-testing-for-mcas-diagnosis/
2. https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome
3.http://www.dysautonomiainternational.org/blog/wordpress/a-tale-of-two-syndromes-pots-and-mcas/
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