Fuzzy heads of Siberian onion perched on thick stems are resisting gentle swaying of spring ocean breeze while my dogs happily roll in the grass. I am sitting on the ground looking over my azaleas and phlox. Tulips, daffodils, and snow whites have finished blossoming. Popping buds of roses, clematis, and peonies are just about to burst into bloom. Small green berries of black and red currants ache for the sun and gooseberries are getting bigger each day.
The last two weeks have been beyond busy trying to get myself back into a routine. My little dog just arrived home from her trip to cranberry farm. My older dog is finally back to himself after two weeks of profound grief of perceived loss of his little sister. Unable to do anything other than eat and go out to pee without her now he is rubbing against my leg and nudging me to pick up a ball and throw it to him. We are a family again.
Yesterday was my first time back in church. I am so happy to see familiar faces, my church family who has been praying for me while I was away.
I will never regret this trip I have taken. I know exactly what is wrong with me and what I need to do to get better and to stay healthy. I have been taking Cholestyramine for black mold exposure. Last week I started Purify by The Life Tree for Protomyxzoa. I feel like I get a little better every day. I was told at Sponaugle that I would need three more months of treatments at the clinic to remove all toxins, break down biofilm, and kill all the pathogens. I need to go back in six months so that they can keep prescribing medication to me.
Right now my future is one big question mark. My last paycheck is in two weeks. I don't know how I will support myself after that. Somehow I am at peace with it and have been able to take one day at a time. I need extensive therapy and supplements neither of which are covered by insurance. Somehow I am fine with the uncertainty of my circumstances. I have done nothing to cause this. I cannot do anything right now to make it better. I am facing a fate that many Lyme patients have experienced. I know that I am on the way up. How long this is going to take and if I can ever make a full recovery is to be seen.
There are symptoms that have completely disappeared. I am able to jump on my rebounder, I am less light and sound sensitive. I am less emotional. I have way less pain and fatigue. Overall there is a lot of improvement.
I traded in my FJ Cruiser for a Prius. It is a perfect car for me and I am totally in love with it! The most practical and economical car I have ever owned, I feel like I am back to myself after the loss of my husband. Somehow after his death I needed the safety of the huge frame of the FJ. Prius, cleverly designed, 50 mpg, and thought through to the smallest details, embodies my philosophy of life. The car feels like an external sign of my healed grief.
I never thought I would publicly admit to doing things like colonics but it is the single most important therapy I have ever done for my health so I am willing to share. I have a colonic twice each week and now I have added ionic foot baths. The relief of symptoms I experience after each session is amazing. Sometimes I feel like I am near healed for several hours. Both colonics and foot baths remove toxins from the body. Any progress I have experienced started after I incorporated colonics into my detox regime. I will continue, with lesser frequency, for the rest of my life.
It is my intent to keep this blog going. I may not write frequently but so many people are desperate, facing this debilitating disease, and looking for answers. I took the chance and flew to Florida without knowing anyone who actually went to Sponaugle. I found excellent care, compassionate nurses, and an understanding doctor. I want others to have a reference point and to know how I am progressing and what I am doing to keep getting better and staying well. Time for Cholestyramine, see you next time!
Monday, May 26, 2014
Saturday, May 17, 2014
Black Death No.2
As much as I love to paint with words now I have not been able to write because my mind has been overwhelmed with toxins that were released during the kill IVs.
"Your body is killing on its own and I don't like you going home like this. I am worried you will not be able to detox quickly enough to remove the toxins the kill is producing!"
Dr. Sponaugle is not excited I am leaving. Neither am I. I know that there is a cure and I am not able to get it because of the cost. How disheartening! Five years ago my insurance would have covered 80% of the bill. Now they cover nothing. With the political changes that have been happening insurance covers less and less. I need three more months of treatment.
I am much more ill than anyone thought. Genetically predisposed to not be able to remove mold toxins my labs run almost twelve times the limit. Compared to other patient my toxicity is a walk in the park. Some patients' black mold levels are one, two, or even three hundred times greater than what they should be. Recently I started taking Cholestyramine and immediately noticed a difference. I am not well. But I am better. Any improvement counts.
On my way home my eyes skip over the dark spotty vents up in the ceiling of Tampa International Airport. I notice moldy dots on a canopy that leans against the plane as I enter. I wonder what is in the recycled air of the plane I am on. All of a sudden the world has become hostile and all I have to protect myself from it is a bottle of liposomal glutathione.
Landscape checkered with carmine stained glass windows of cranberry bogs announces we are nearing Massachusetts. My little dog is staying at one of the farms while I am getting my treatment. I may not be able to keep her. I may have to surrender her to a rescue. There are many changes ahead.
"I have to figure all of this out!"
"But you can't!"
One of my fellow patients mercifully brings my mind back to earth. I wrote these words with a lipstick on my mirror. I can't figure it out. Every day brings major changes and what was one way yesterday is completely different today. My type A personality is taking a beating and I hope that I am once and for all cured from planning and fretting over what I cannot figure out. All I can do now is take the next step and wait how it all shakes out.
My car has just puttered through five light changes right next to Charles River in early evening Boston traffic. I got a good look at college kids practicing their rowing skills. "WHO IS MAN THAT YOU ARE MINDFUL OF HIM?" An inscription on the front of the building where I am supposed to take my final. I wonder if other people read this too or if the voice of God has become just another prop in the hustle and bustle of the city. Once inside I can feel the musty air coming from the air-conditioning vents. I need to be quick. This building was built in 1908 and there is filth inside the vents that can seriously hurt me. The exam is supposed to take two hours. Thirty minutes into it my mind is shutting down already with the dirty air circulating throughout the room. I hand my exam in after one hour. I only did the absolute minimum to get a 90 and no extra credit. I run out of the building. Once in my car I start sobbing uncontrollably. Does this mean that I will not be able to finish my degree? Though online my program has four on-campus classes requirement. The entire campus is over a hundred years old.
I have learned to observe my emotions from a distance and understand that they are largely affected by mold and toxicity. There is something inside me that never allows me to give up. That something rises without fail every time I need to fight for myself or others. Like now. I observe this something that simply refuses to give up on me, my life, and my dreams. I realize I can finish. Even if I have to wear a HAZMAT suit and a respirator to every class. I can finish. I can ask to get an exemption due to health reasons. Where there is a will there is a way. Every day presents a new set of twists an turns and nothing is set in stone.
Thursday my house passes mold inspection with almost an A+. Some very minor non toxic mold in air conditioners. The rest of the house is mold free. I breathe a sigh of relief. I am safe in my home. The inspector agrees to look at the church. The church is completely mold free. There are two buildings I am safe in. My house and my church.
The car dealership is raking me over the coals. I have to trade my car in and get something cheaper and more economical. After my husband's death I needed a bandaid bigger than a box of chocolates so I got this big, bad, and beautiful Toyota FJ Cruiser. I needed the car. I felt safe in it. It was faithful in rain, sleet, and all the snow storms we have had. Now it's time to part with it. I am tired and don't have the strength to argue with the sales rep. I end up leaving because I know that what they are offering is not a good deal. Will try somewhere else on Monday.
Time for more Cholestyramine. My schedule of supplements and medications has become very regimented now that five of them cannot be taken with anything else. I basically take medications all day. The reward is six hours on uninterrupted sleep for the first time in years. I will do anything to avoid black death No.2 and its consequences. To be continued tomorrow!
"Your body is killing on its own and I don't like you going home like this. I am worried you will not be able to detox quickly enough to remove the toxins the kill is producing!"
Dr. Sponaugle is not excited I am leaving. Neither am I. I know that there is a cure and I am not able to get it because of the cost. How disheartening! Five years ago my insurance would have covered 80% of the bill. Now they cover nothing. With the political changes that have been happening insurance covers less and less. I need three more months of treatment.
I am much more ill than anyone thought. Genetically predisposed to not be able to remove mold toxins my labs run almost twelve times the limit. Compared to other patient my toxicity is a walk in the park. Some patients' black mold levels are one, two, or even three hundred times greater than what they should be. Recently I started taking Cholestyramine and immediately noticed a difference. I am not well. But I am better. Any improvement counts.
On my way home my eyes skip over the dark spotty vents up in the ceiling of Tampa International Airport. I notice moldy dots on a canopy that leans against the plane as I enter. I wonder what is in the recycled air of the plane I am on. All of a sudden the world has become hostile and all I have to protect myself from it is a bottle of liposomal glutathione.
Landscape checkered with carmine stained glass windows of cranberry bogs announces we are nearing Massachusetts. My little dog is staying at one of the farms while I am getting my treatment. I may not be able to keep her. I may have to surrender her to a rescue. There are many changes ahead.
"I have to figure all of this out!"
"But you can't!"
One of my fellow patients mercifully brings my mind back to earth. I wrote these words with a lipstick on my mirror. I can't figure it out. Every day brings major changes and what was one way yesterday is completely different today. My type A personality is taking a beating and I hope that I am once and for all cured from planning and fretting over what I cannot figure out. All I can do now is take the next step and wait how it all shakes out.
My car has just puttered through five light changes right next to Charles River in early evening Boston traffic. I got a good look at college kids practicing their rowing skills. "WHO IS MAN THAT YOU ARE MINDFUL OF HIM?" An inscription on the front of the building where I am supposed to take my final. I wonder if other people read this too or if the voice of God has become just another prop in the hustle and bustle of the city. Once inside I can feel the musty air coming from the air-conditioning vents. I need to be quick. This building was built in 1908 and there is filth inside the vents that can seriously hurt me. The exam is supposed to take two hours. Thirty minutes into it my mind is shutting down already with the dirty air circulating throughout the room. I hand my exam in after one hour. I only did the absolute minimum to get a 90 and no extra credit. I run out of the building. Once in my car I start sobbing uncontrollably. Does this mean that I will not be able to finish my degree? Though online my program has four on-campus classes requirement. The entire campus is over a hundred years old.
I have learned to observe my emotions from a distance and understand that they are largely affected by mold and toxicity. There is something inside me that never allows me to give up. That something rises without fail every time I need to fight for myself or others. Like now. I observe this something that simply refuses to give up on me, my life, and my dreams. I realize I can finish. Even if I have to wear a HAZMAT suit and a respirator to every class. I can finish. I can ask to get an exemption due to health reasons. Where there is a will there is a way. Every day presents a new set of twists an turns and nothing is set in stone.
Thursday my house passes mold inspection with almost an A+. Some very minor non toxic mold in air conditioners. The rest of the house is mold free. I breathe a sigh of relief. I am safe in my home. The inspector agrees to look at the church. The church is completely mold free. There are two buildings I am safe in. My house and my church.
The car dealership is raking me over the coals. I have to trade my car in and get something cheaper and more economical. After my husband's death I needed a bandaid bigger than a box of chocolates so I got this big, bad, and beautiful Toyota FJ Cruiser. I needed the car. I felt safe in it. It was faithful in rain, sleet, and all the snow storms we have had. Now it's time to part with it. I am tired and don't have the strength to argue with the sales rep. I end up leaving because I know that what they are offering is not a good deal. Will try somewhere else on Monday.
Time for more Cholestyramine. My schedule of supplements and medications has become very regimented now that five of them cannot be taken with anything else. I basically take medications all day. The reward is six hours on uninterrupted sleep for the first time in years. I will do anything to avoid black death No.2 and its consequences. To be continued tomorrow!
Tuesday, May 6, 2014
Two Steps Forward and One Step Back
The doctor and his nurse are examining my latest labs. It is clear that I am much sicker than anyone had suspected. Toxin markers have been getting worse each week meaning more and more toxins have been pulled out of my brain and my nerves. My treatment will take longer than I thought and I have to go back home and take out a substantial loan so that I can finish. It will take my nerves six to twelve months to heal once all the toxins are gone.
"Let's start a double kill today"
I asked for an aggressive protocol again and I got it. Single, double, and triple "kills" break up the biofilm releasing mycotoxins, neurotoxins, heavy metals, and microbes that have found a hiding place in the goo. More and more toxins escape into my blood stream and my brain is trying to stay afloat in this toxic soup. I was warned about this but it is part of the cycle so I don't complain. Detox drips and colonics help with removing the mess.
When I arrived here at Sponaugle I began to be able to write for the first time since last August. With the kill releasing all the toxins my brain is down in the dumps again and I am just surviving in bed. It's not terrible, I just feel unwell and all I want is to stay in bed and not have to do anything. There is the Salvador Dali museum, Cape Canaveral, Bush Gardens, Epcot, and other attractions within driving distance but I am simply not able to pull myself together to manage a trip like that. Reading, watching TV, or listening to music have no draw on me. Right now I just want to exist as comfortably as possible.
Saturday night my friend takes me to a beach in Clearwater. For several hours, I have a clear mind and enough strength to manage a short walk. An endless stretch of fine sand like I know from Italy softly glows in the sunset. We quickly take pictures as the sun changes shape and color while the Earth is turning away from this wonderful, magic, glowing ball of burning gasses. As the rays bend in the atmosphere the sun looks like it's overflowing into the ocean and pouring out somewhere beyond the horizon. Then, quickly, it is gone! People clap and a bell clangs commemorating this important event. I allow myself to immerse in the wonder and beauty of this spectacle. I need to use these several hours of semi normalcy to give my overburdened mind much needed rest. I choose to not think about my symptoms and simply exist for right now. All of my senses are on alert for the performance that nature prepared for this evening. Parrots are trying to solve their domestic disputes over our heads. My friend and I share our joys and sorrows. Clusters of people around us hum with conversations and the wind carries over whiffs of cigarette smoke.
I have improved a lot since last August but I still have long ways to go. Toxins need to be pulled out of my nerves and removed from my body, biofilm broken up, microbes killed, all the while my malfunctioning immune systems tries to rally and fight on its own. My hormones need to even out. My gut must heal so that it can properly absorb all the nutrients I am trying to give it.
In my initial email to Sponaugle I included following symptoms:
"Let's start a double kill today"
I asked for an aggressive protocol again and I got it. Single, double, and triple "kills" break up the biofilm releasing mycotoxins, neurotoxins, heavy metals, and microbes that have found a hiding place in the goo. More and more toxins escape into my blood stream and my brain is trying to stay afloat in this toxic soup. I was warned about this but it is part of the cycle so I don't complain. Detox drips and colonics help with removing the mess.
When I arrived here at Sponaugle I began to be able to write for the first time since last August. With the kill releasing all the toxins my brain is down in the dumps again and I am just surviving in bed. It's not terrible, I just feel unwell and all I want is to stay in bed and not have to do anything. There is the Salvador Dali museum, Cape Canaveral, Bush Gardens, Epcot, and other attractions within driving distance but I am simply not able to pull myself together to manage a trip like that. Reading, watching TV, or listening to music have no draw on me. Right now I just want to exist as comfortably as possible.
Saturday night my friend takes me to a beach in Clearwater. For several hours, I have a clear mind and enough strength to manage a short walk. An endless stretch of fine sand like I know from Italy softly glows in the sunset. We quickly take pictures as the sun changes shape and color while the Earth is turning away from this wonderful, magic, glowing ball of burning gasses. As the rays bend in the atmosphere the sun looks like it's overflowing into the ocean and pouring out somewhere beyond the horizon. Then, quickly, it is gone! People clap and a bell clangs commemorating this important event. I allow myself to immerse in the wonder and beauty of this spectacle. I need to use these several hours of semi normalcy to give my overburdened mind much needed rest. I choose to not think about my symptoms and simply exist for right now. All of my senses are on alert for the performance that nature prepared for this evening. Parrots are trying to solve their domestic disputes over our heads. My friend and I share our joys and sorrows. Clusters of people around us hum with conversations and the wind carries over whiffs of cigarette smoke.
I have improved a lot since last August but I still have long ways to go. Toxins need to be pulled out of my nerves and removed from my body, biofilm broken up, microbes killed, all the while my malfunctioning immune systems tries to rally and fight on its own. My hormones need to even out. My gut must heal so that it can properly absorb all the nutrients I am trying to give it.
In my initial email to Sponaugle I included following symptoms:
Low energy and no stamina, overall exhaustion, choking, losing my voice, hoarse voice, difficulty swallowing (food and medication gets stuck in my throat), terrible nausea- more like a feeling like I am drowning without the pulmonary distress, vision problems-seeing black spots fly by in my peripheral vision, also unable to read 1/4" print- this comes and goes, hearing- unable to distinguish what people are saying, this also comes and goes, sensitivity to sound. Terrible night sweats, brain fog, memory loss, word retrieval issues. I am a teacher, I have not been able to remember about 20% of my students' names, if I meet them in a hall or outside of school I cannot remember their name and if I teach them or not. If the kids dramatically change their haircut (happens quite frequently with teenagers) I am not able to remember the student's name. Making frequent mistakes on the board (not on paper), cannot remember students who graduated. My muscles are like jello and I have lost 12 lbs. Food allergies- almonds, nutritional yeast, candida, etc, environmental allergies- smoke, perfumes, diesel fumes etc. My gums have recessed about 1/8". Joint pain, muscle pain, neuropathy in left hand, neck and shoulder pain and stiffness, having a hard time walking due to pain and cannot exercise, loss of balance every now and then. My hips and knees are giving up under me. Tingling and numbness in my face, hands, and legs. Change in taste- every now and then when I eat chicken it tastes like metal. My hair is falling out and I feel like I am 100 years old. Terrible sleep disruptions, last night got 2 hours of sleep. I am also very emotionally sensitive and easily irritated by small things and that is not my usual self. I am not able to watch any movies because any drama makes me cry. I am unable to watch or read about other people's suffering without crying. My handwriting is atrocious. My heart feels like I drank a gallon of coffee. I have had several episodes of irregular heartbeat. If I don't take major amount of probiotic I have terrible GI problems, even with the probiotic I feel like there is yeast in my stomach. My liver and my spleen hurt, I am assuming it's from all the antibiotics I have been on.
Current symptoms, severity is for the most part much reduced:
Names still present a major challenge for me. Brain fog, memory loss, word retrieval issues, fatigue, joint pain, muscle stiffness and occasional pain, food and environmental allergies, still some neuropathy in left hand, occasional tingling in hands, occasional air hunger, hair loss, sleep disruptions (about 3-4 hours of sleep per night), GI problems. Emotionally sensitive on occasion. Occasional night sweats.
This is a good list to make for myself. When I was so horribly ill in the fall I thought of documenting my progress but I was so overwhelmed with the disease that I was not able to write anything. I am in a much better place now. Thank God!
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