This...is probably one of the reasons i began this blog....and i am finally getting around to writing about it. I am not certain how i will section this up but it will be in multiple parts as i've been extensively experimenting in this area. Please remember my situation is severe, i've had very little access to medical care and had to get very creative. Please use your intuition and know each of our bodies are so different. But, we already know this.
Lets start. So, i began developing symptoms of mast cell in 2008 but i didn't know and either did any Drs at the time. I would go through periods of losing most foods, medications, supplements etc. In 2013 i went through a seemingly amazing partial remission after being on an antibiotic for a month and a pregnancy that really helped my system. But...it all disappeared and i crashed into the abyss in 2016/2017. My world kept growing smaller and smaller. Maybe you can relate. except for a year of pregnancy, the past decade has meant i mostly take containers of foods places...back when i could. Then in February 2017, it was my last attempt of being out in the world beyond Dr's and hospitals. My husband and i went to a restaurant and i decided to try food something....and it went really bad. I went into tachycardia, couldn't feel my legs, lips swollen and i have never stopped the vertigo that severely began that day...5 years later. My husband believed i was having a panic attack and refused to seek medical care but i knew it was much different and i had no benadryl or anything with me. So i immediately began pressing the spot right under my nose. It is a potential life saving meridian point in sticky situations. I have had to utilize that point along with other maneuvers MANY times as i eventually became allergic/intolerant to most every antihistamine etc. It did help avert more crisis but my body began a cascading mast cell situation over coming months induced by many perfect storms of herxing, lyme treatments, stress and other things that completely collapsed my body to the bedridden state i remain in.
In 2018/2019/2020 i had daily at times back to back to back mast cell episodes in my neuro system that would leave me completely unable to move. Even eating safe foods was dangerous at times and full body hives, swollen lips and at times mildly swelling throat was a common occurrence if i wanted to eat...to maintain life. It felt like russian roulette...like should i chance eating? or chance not eating and eventually wither from blood sugar drops that were now happening every 45 minutes (was told it was adrenal related by cardiologist). My practioner in 2018 did not think there was a high likelihood with the state my adrenals etc were in that i would survive an epi pen attempt. Also, you can't use an epi pen 3 times a day. So, i had difficult choices to make, as some of you can relate. I had to keep that histamine threshold at levels that didn't kill me whilst not being able to tolerate any meds or supplements at this point. I also had severe cognitive issues from the constant inflammation and episodes and so little help. I was disassociated 24/7 for large portions of these years. I had no allergists etc because remember i was constantly sent home and told to get to Mayo clinic somehow by most Drs at this point.
Sooooo....i knew i was going to die if i didn't get some vitamins in me. My D level was a 6 and it is presumed it went much lower than this as i got more severe but was not tested due to obvious reasons. My B12 levels went from 700 to under 400 in 2017 and many levels just absolutely plummeted in me. All of 2019 i worsened extensively. I was having mini seizures in the night. I lay in fetal position with my eyes closed all day shaking violently at times. My neighbor is an acupuncturist and would be called over instead of ambulances at this point...because whats the point? I couldn't handle needles anymore at that point but she would apply points to try, even a little to bring my adrenals back from obvious collapse. She felt helpless though and it pained her greatly to watch me suffer without being able to give my body any herbs. The tachycardia and blood sugar drops every single overnight were very difficult, understatement. My current lyme practioner has said i am the worst metabolic syndrome case shes ever seen. No amount of meditation or neural retraining would alter it significantly. Only tiny temporary amounts. I would awaken unable to move, blurry eyed and in incredible distress...every morning...plus my family left me be. My husband refused to assist me. So i would leave sweet potatoes in here overnight and glasses of water to survive the mornings with so little help or assistance. I began developing large sores in my mouth and other areas in 2019 that it is now thought to be scurvy. I developed rectal bleeding that was incredibly painful. My period mostly ceased in early 2018 for 4 years. It was like i could not produce enough blood (some type of hypovolemia? a theory of mine). I could not move to my side...daily...without my heartbeat going above 175 bpm and massive shortness of breath as well as other things that go along with these states. In June 2019, i attempted to put vitamin C drops on my belly and my throat and lips began swelling. Another similar situation and i had to call ambulance. It was like a bad movie that just kept getting worse. HOW was i going to get these vitamins in me that i needed? And was not absorbing correctly. Dr's knew i needed vitamins, i was routinely told. Iv's were tried with more reactions to most and it felt like people just gave up on my case.
I then heard about the book on Dysautonomia and Thiamine Deficiency. Although i could not read books at all then, i was able to watch some youtube videos on it. I had so many symptoms of berberi, yet no ER tests for that and unless you are a current alcoholic, they really don't explore it much in that setting. I was experiencing mental signs of it, some type of worsening brain swelling/inflammation with intense pain and pressure most hours (bubbles were constantly felt in brain and spine at this time), constant tachycardia and other issues. In December 2020, my lyme practioner confirmed i was onto something, that i absolutely had a overlooked B1 deficiency. Thats been a huge part of this journey for me, looking and listening within more and more. Trusting. My body gives me the information, if i will just listen.
In June 2020, i remember i made a phonecall at midnight to a church ( i am not religious) and someone prayed over me. I left an email of where i wanted my cremated ashes to be placed. I knew i was dying a slow death from severe deficiencies. I could hardly digest food or lift my head up. An attempt at the hospital sent me home crashed further. I prayed every day when i went that it would not be torturous and not be when my daughter was sleeping with me. Then, i got strong inner guidance to re- try magnesium and B complex...on my skin as it felt like i was out of most options. I had attempted this before in 2017. I did raise my D and B levels but quit it because i couldn't figure out what was causing me to worsen. The bottles were retrieved. I decided there was an order to this after some research. Not much because my brain would go black very quickly with thoughts or stimulation at this point. I was NOT going to start with C and D this time but magnesium and B. I also began a few crystals of celtic sea salt on my tongue same week. So, i began. One drop on my knee on B complex. One pump of magnesium lotion on my buttocks. And, from that tiny amount....i felt shifts. Like my bodys cells were desperately soaking these in. I had NO reaction. So that fall i spent building my B up, then i bought a B1 liquid on top of complex because to treat berberi in hospital setting you need HIGH amounts. Which i didn't safely have access to and most likely would cause a cytokine storm in me. I had to explore this as a pioneer and slowly keep adding drops. Within DAYS of starting B1 the severe daily heart pain and related symptoms began diminishing!! The brain swelling and pressure and severe regular pain began shifting within a month. The massive heart rate irregularities from rolling over were now only when i tried to sit up to use restroom. The vein or artery in my left neck was shrinking and no longer hugely pulsating (yes, it was visible daily on outside) especially when i tried to move or sit up for restroom. I was doing something...i was really, really doing something. How was this overlooked?
Here is the book i am referring to:
https://www.sciencedirect.com/book/...se-dysautonomia-and-high-calorie-malnutrition
Part 2 is next....
Lets start. So, i began developing symptoms of mast cell in 2008 but i didn't know and either did any Drs at the time. I would go through periods of losing most foods, medications, supplements etc. In 2013 i went through a seemingly amazing partial remission after being on an antibiotic for a month and a pregnancy that really helped my system. But...it all disappeared and i crashed into the abyss in 2016/2017. My world kept growing smaller and smaller. Maybe you can relate. except for a year of pregnancy, the past decade has meant i mostly take containers of foods places...back when i could. Then in February 2017, it was my last attempt of being out in the world beyond Dr's and hospitals. My husband and i went to a restaurant and i decided to try food something....and it went really bad. I went into tachycardia, couldn't feel my legs, lips swollen and i have never stopped the vertigo that severely began that day...5 years later. My husband believed i was having a panic attack and refused to seek medical care but i knew it was much different and i had no benadryl or anything with me. So i immediately began pressing the spot right under my nose. It is a potential life saving meridian point in sticky situations. I have had to utilize that point along with other maneuvers MANY times as i eventually became allergic/intolerant to most every antihistamine etc. It did help avert more crisis but my body began a cascading mast cell situation over coming months induced by many perfect storms of herxing, lyme treatments, stress and other things that completely collapsed my body to the bedridden state i remain in.
In 2018/2019/2020 i had daily at times back to back to back mast cell episodes in my neuro system that would leave me completely unable to move. Even eating safe foods was dangerous at times and full body hives, swollen lips and at times mildly swelling throat was a common occurrence if i wanted to eat...to maintain life. It felt like russian roulette...like should i chance eating? or chance not eating and eventually wither from blood sugar drops that were now happening every 45 minutes (was told it was adrenal related by cardiologist). My practioner in 2018 did not think there was a high likelihood with the state my adrenals etc were in that i would survive an epi pen attempt. Also, you can't use an epi pen 3 times a day. So, i had difficult choices to make, as some of you can relate. I had to keep that histamine threshold at levels that didn't kill me whilst not being able to tolerate any meds or supplements at this point. I also had severe cognitive issues from the constant inflammation and episodes and so little help. I was disassociated 24/7 for large portions of these years. I had no allergists etc because remember i was constantly sent home and told to get to Mayo clinic somehow by most Drs at this point.
Sooooo....i knew i was going to die if i didn't get some vitamins in me. My D level was a 6 and it is presumed it went much lower than this as i got more severe but was not tested due to obvious reasons. My B12 levels went from 700 to under 400 in 2017 and many levels just absolutely plummeted in me. All of 2019 i worsened extensively. I was having mini seizures in the night. I lay in fetal position with my eyes closed all day shaking violently at times. My neighbor is an acupuncturist and would be called over instead of ambulances at this point...because whats the point? I couldn't handle needles anymore at that point but she would apply points to try, even a little to bring my adrenals back from obvious collapse. She felt helpless though and it pained her greatly to watch me suffer without being able to give my body any herbs. The tachycardia and blood sugar drops every single overnight were very difficult, understatement. My current lyme practioner has said i am the worst metabolic syndrome case shes ever seen. No amount of meditation or neural retraining would alter it significantly. Only tiny temporary amounts. I would awaken unable to move, blurry eyed and in incredible distress...every morning...plus my family left me be. My husband refused to assist me. So i would leave sweet potatoes in here overnight and glasses of water to survive the mornings with so little help or assistance. I began developing large sores in my mouth and other areas in 2019 that it is now thought to be scurvy. I developed rectal bleeding that was incredibly painful. My period mostly ceased in early 2018 for 4 years. It was like i could not produce enough blood (some type of hypovolemia? a theory of mine). I could not move to my side...daily...without my heartbeat going above 175 bpm and massive shortness of breath as well as other things that go along with these states. In June 2019, i attempted to put vitamin C drops on my belly and my throat and lips began swelling. Another similar situation and i had to call ambulance. It was like a bad movie that just kept getting worse. HOW was i going to get these vitamins in me that i needed? And was not absorbing correctly. Dr's knew i needed vitamins, i was routinely told. Iv's were tried with more reactions to most and it felt like people just gave up on my case.
I then heard about the book on Dysautonomia and Thiamine Deficiency. Although i could not read books at all then, i was able to watch some youtube videos on it. I had so many symptoms of berberi, yet no ER tests for that and unless you are a current alcoholic, they really don't explore it much in that setting. I was experiencing mental signs of it, some type of worsening brain swelling/inflammation with intense pain and pressure most hours (bubbles were constantly felt in brain and spine at this time), constant tachycardia and other issues. In December 2020, my lyme practioner confirmed i was onto something, that i absolutely had a overlooked B1 deficiency. Thats been a huge part of this journey for me, looking and listening within more and more. Trusting. My body gives me the information, if i will just listen.
In June 2020, i remember i made a phonecall at midnight to a church ( i am not religious) and someone prayed over me. I left an email of where i wanted my cremated ashes to be placed. I knew i was dying a slow death from severe deficiencies. I could hardly digest food or lift my head up. An attempt at the hospital sent me home crashed further. I prayed every day when i went that it would not be torturous and not be when my daughter was sleeping with me. Then, i got strong inner guidance to re- try magnesium and B complex...on my skin as it felt like i was out of most options. I had attempted this before in 2017. I did raise my D and B levels but quit it because i couldn't figure out what was causing me to worsen. The bottles were retrieved. I decided there was an order to this after some research. Not much because my brain would go black very quickly with thoughts or stimulation at this point. I was NOT going to start with C and D this time but magnesium and B. I also began a few crystals of celtic sea salt on my tongue same week. So, i began. One drop on my knee on B complex. One pump of magnesium lotion on my buttocks. And, from that tiny amount....i felt shifts. Like my bodys cells were desperately soaking these in. I had NO reaction. So that fall i spent building my B up, then i bought a B1 liquid on top of complex because to treat berberi in hospital setting you need HIGH amounts. Which i didn't safely have access to and most likely would cause a cytokine storm in me. I had to explore this as a pioneer and slowly keep adding drops. Within DAYS of starting B1 the severe daily heart pain and related symptoms began diminishing!! The brain swelling and pressure and severe regular pain began shifting within a month. The massive heart rate irregularities from rolling over were now only when i tried to sit up to use restroom. The vein or artery in my left neck was shrinking and no longer hugely pulsating (yes, it was visible daily on outside) especially when i tried to move or sit up for restroom. I was doing something...i was really, really doing something. How was this overlooked?
Here is the book i am referring to:
https://www.sciencedirect.com/book/...se-dysautonomia-and-high-calorie-malnutrition
Part 2 is next....
