whatamitochondriac-blog

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Facebook August 23, 2017 - Here's to starting the day on a good path. I don't quite know what to make of it but during my shower (!!) this morning, the handfuls of hair that came out (yes, this is a sad part of this journey) were almost exclusively comprised of the grey ones. I noticed because the clumps are usually dark. I am going to take this as a sign that my body really is rebuilding itself new. Sending lots of love. 🙏💚😇🍀🤞

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Facebook August 21, 2017 - Started early! Fingers crossed 🤞😇🙏💚

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Major Autohemotherapy

Facebook August 21, 2017 - Ok my friends and family here is treatment phase 2. I begin "major autohemotherapy" tomorrow and will be participating in a study sponsored by the American Academy of Ozonotherapy to prove the efficacy of ozone as a medical treatment. This therapy is used all over the world and has been proven safe and very effective for stealth infections. It involves withdrawing blood and cleaning it with ozone before infusing it back into the body. This is done in concert with IV glutathione and other things to support detox as toxins/organisms are targeted by the ozone. This clinic does the largest amount of this kind of therapy in the country -7500 patients per year. Nobody has ever even gone to the hospital from any treatment complication. Today I saw with my own eyes a parasite - a potential spirochete - zooming around in a drop of my blood. As you know I have many parasitic infections but the one we are going after first is a fluke, which is a kind of flat worm (gross). I also learned I have not one but two forms of pneumonia. But no problemo; all of this will be addressed with the rest of my infections during this next phase of treatment. I will start at a very low dose. 50cc, one pass through the machine. My port will be used to draw the blood and to feed it back into my body. My treatment is expected to last about 3 months. I should know within a week if I am responding well. Heads up: all of this treatment was pioneered and is commonly practiced in Germany for all of the illnesses I have and more... and all of the machines that will be used for the autohemotherapy come from Germany... and the treatment is cheaper in Germany. So I may be moving my treatment to Germany if I can get into one of the clinics that have been recommended. This form of treatment often graduates to stem cell work, which is illegal in the USA... but we'll talk more about that in another phase. I am very optimistic after this consult and looking forward to my first treatment in phase 2! PS want to meet a parasite? I have a video which shows the little fecker in action in my bloodstream. I can't post it here bc the doctor asked me not to (I'm part of a study so I think no photos can be shared publicly until it's published), but I can send it individually to friends. 😅

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Facebook - August 23, 2017 - Ok. Let's start this week off right! First, I am extremely pleased with myself. I figured Mouse had the same thing I had, because her only observable symptoms were loss of appetite, pain and weakness and fatigue. So after a million vet visits where they couldn't pinpoint the source of these symptoms (sound familiar?) I decided to ask the vet to do an experiment with me. Lower her histamine levels (mine are exceedingly high and she has sneezing fits and eye drainage which indicates hers are too) and give her an anti-inflammatory (inflammatory cytokines are the result of toxic mold exposure and the parasites and bacteria cause even more inflammation). Within ONE HOUR of administration of zyrtek (ok for cats) and an NSAID, she was walking, running, eating jumping and playing. See pics. Yesterday she couldn't lift herself up off the ground. My mom mentioned my investigation into treatment in Germany. It turns out they do MAH for cats too, which is a much better long term solution. Maybe we both need a consult! In any case, as a result of her for-now restored well-being, she has been officially approved for international travel and we will see what this German treatment is all about very soon! For now I stay the course and head to the clinic for MAH at 2 pm! Thank you for all the encouragement, thoughts, prayers, donations, offers to help and general support. We both love you guys!

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Facebook, August 27, 2017 - Well, it was a bad day. Mouse almost certainly has what I has; she continues to be too weak to stand and walks painfully when she can. The ER vet gave her a narcotic this time. I am just so grateful for the uber drivers and vet staff; I didn't have to carry her myself. But we were there until 2, and my body was already struggling. Keep us with you in your hearts this weekend.

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The herx, the herx, the herx

Big herx last night. Having a toolbox handy is vital, because it can really happen at any time in any form. Last night it was at midnight. Histamine levels rose first (body has only so many defense mechanisms and histamine levels are high already in patients like me so it doesnt take much). I developed a rash all over and itching like crazy. Then the die-off of parasites and bacteria: flu-like symptoms with fever and chills. I had forgotten what even chills felt like! The first few were almost pleasant until they became constant and kept me up till 3:30). The reason the body has the herx is because every organism gives off some form of toxic gas when it dies. So the die off of hundreds of millions of organisms is hard to stay 100% ahead of. However my herx reactions are very manageable in that I can manage them myself. I owe that 100% to all the very good guidance I have gotten about having/following a detox regimen to the letter. The emergency detox and histamine blocking stuff - liposomal glutathione (way better and faster acting than the most often used glutathione supplement), and the benedryl - all did its job last night pretty effectively and upon waking I just have some allergy type post-nasal drip. Now I have to continue regimen before I go back to sleep. (Several things I have to take in the am on an empty stomach. How does one do this? Wake up, take one of them, go back to sleep for an hour, wake and take another, and so forth before getting in the supplements that are intended pre-food... and then food and then the ones with food. Not at all complex. 😅🤕) Anyway that's my update for now. I'll let you know what my energy levels are once I wake up for good. For now I just want to say that when I woke up and checked my email I had all these notifications from yesterday from Andy's fundraiser, including donations from many people I don't even know in addition to many of you, my fb family. I'm overwhelmed and humbled by the generosity of people and the help is truly going to make a difference, but spiritually speaking I just have to acknowledge that feel the compassion and love in such a tangible way that I feel like I'm being held by the largest angel I ever saw. 😇🙏 With so much love 💚💚💚💚💚 cherie

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Andy has been one of my best friends since 2009 when we first met. When he told me he wanted to do this I felt very humbled, and when he did do it and I read what he wrote, I was overwhelmed with gratitude. Yesterday was one of the toughest days yet and when I came to fb and saw his post, I cried hard and for a long time. Because Andy had no idea how bad I was doing that day but he does know better than most what is going on, having seen some of the more gruesome and vulnerable moments. He came in June 2016 when I had my first total-system crash and couldn't stand up or walk for a few months; he made me a week's supply of turkey burgers so I could just reheat them. He has come to visit me so many times over 10 years and been content just sitting in my living room to chat when I couldn't come out to visit. And when I had good stints, he wouldn’t mind going to brunch at the same place evey time because it was quiet and the food didn't make me sick, and he would watch Mouse when I wanted to get away to sit on a beach or in a Therma and try to ground the electrical current that plagues my body and brain on so many of even my "good" days. It means a lot to have someone stick by you this way. And I guess in that way I should be grateful because one thing this illness is doing is teaching me what friendship and compassion feel like when they really are needed most. I am not sharing to create any pressure to donate, but because I am so grateful it exists and because these days, I am ready and willing to be honest about what this period is my life looks like. And Andy, I love you and I'm bawling my eyes out that you did this. Both the fundraiser and the donation you made. And one of your friends who I don't even know has donated. I don't know what else to say but "you are so loved" too, and thank you, so much. I love all of you guys very much and I'm so grateful for all the support and care I feel. Sending all my best to you, and staying the course. Tomorrow is phosphatydl choline again with glutathione, and MAH (major autohemotherapy) and then the weekend, when I get/have to have a break and hopefully get to sleep a lot more. 💚🙏😇🦄🤞🍀🤕🐣

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Facebook August 25, 2017 - Major autohemotherapy. 50cc. All that blood is now back inside my body where it belongs, cleaned, and now the glutathione is doing its job, and I am beginning to feel that familiar infusion of strength. It means so, so much after such a long period with so much weakness and every single time I feel it I am so so so thankful. When I am stronger and can spare more blood we'll do more, and then when I'm stronger still I'll graduate to multiple passes via the machine. Yesterday's illness is quickly abating and I'm feeling a good amount of energy. 🙏🙏🙏😇😇😇💚💚💚

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Facebook August 25, 2017 - Photo: The miracle worker. Phosphatydl Choline. At first, I have to drip the IV no more than 10 seconds between drops. For the first hour, the herx knocks loudly at the door with jaw pain, pain in my arms, nausea and dizziness. Then, something shifts and all of that starts turning into a feeling of strength in addition to the herx-knock in the background. I have been going for 2.25 hours and am now at one drop per second, with the goal to be at full speed by 3 pm. Then, comes the major autohemotherapy (MAH). That takes my blood out and cleans it with ozone (kills anything bad) and then puts it back in. Then we do the glutathione drip, to grab all the toxic stuff we are pushing out of my cells, and bring it out of my body. I should be done around 4:30 today. Thanks to all of you for your kindness, your positive energy and your love. It helps me every single day, and Andy and Tania and Mick, you have each gone above and beyond these past few days in ways I never thought I'd [have to] see anyone go in support of my health and strength, and I am sitting here feeling gratitude with each drip. Lots of love coming back to each and every one of you 💚💚💚

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Facebook August 23, 2017 - Ok my fb family, some time for real talk. Today was one of my best days in 5ish years. I felt healthy and able, I was able to walk upright without pain or debilitating weakness, and I had ZERO pain in my lungs. I made it all the way to 6:30 pm before the exhaustion kicked in. Susan has been gracious enough to let me have some downtime before we work on my new medicine schedule. I am watching the storm outside the window and petting my cat and letting myself fall asleep if I need to. In the meantime, I have decided to post this video in honor of what I hope are days belonging to a soon-to-be distant past. It is from my intake evaluation upon arriving in Tampa (no sound). This will be hard for those who have not seen me this way, but this has been what many days have looked like especially over the past few months. It makes me sad that my loved ones have had to feel they are in the process of losing me, and that I felt that way myself, in the past. My goal, my wish, my hope, my will is to have energy all day, to be able to sleep all night, to be able to walk through a grocery store and an airport, to be able to once again snorkel and SUP, to breathe with ease and joy, to climb stairs, to run, to do yoga again, to be able to watch tv, to wear sunglasses only outside and only in the daytime, and to feel electricity in my veins only if I am ever so stupid as to put my finger in a light socket. I wish I wish I hope I hope I will I will. I've got a long journey ahead of me but I am so incredibly hopeful after seeing that such progress is possible from where I began my journey of treating this illness. I really don't know if I could be doing it without all of the love coming to me from so many wonderful people. I love you, I thank you, and I miss you. And that made me tear up so that's the end of this one. 💚Cherie

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Facebook August 22, 2017 - So this is an example of one of the types of tremors/involuntary movements that happen on days my body is struggling like today. Sometimes it happens in multiple places simultaneously which can get pretty lame because once it starts it can go on for a while. This time was only the finger and only for 20 or so minutes. Today's been pretty sucky so I'll sign off for the night but thanks again to everyone and especially Susan who is going to help me tomorrow with some organizing that my brain can't do right now. Love you guys lots. 💚

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The Herx

Facebook August 20, 2017 - Anyone in a medically necessary detox process will tell you the ups and downs are real. Friday I felt like at least a hundred bucks 😅, and today went ok, but now I'm up late tonight having a very intense herx*. I have taken basically all of the meds I can without much change. Even Benedryl, bc a fun part of herxing with a very backed up liver is your body can really ramp up the already high histamine. So I have post-nasal drip and itch everywhere on top of the headache/muscle and joint pain, which is the main stuff today. Mousey is a very good companion, and every time I get up she does too, and every time I get back in bed, she does too, and even though I'm miserable it's very comforting to hear her purring. I still owe some of you responses to your kind messages... bear with me. 💚💚💚  *herxheimer reaction caused from the detox process = joint and muscle pain, nausea, headache, sweating, etc.

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Facebook, August 19, 2017 - My world has become rather myopic due to illness but this is relevant to me. I have spent about $17k in healthcare in the last two weeks (let that sink in) because my insurance doesn't cover 70% of my treatment. Mold toxicity and the coinfections it presents are the Lyme disease of 10 years ago. The USA is behind places like Germany, France and even China if you can believe it, when it comes to biotoxin illnesses. It seems hard to understand until you realize that there is more money in treating symptoms than causes. And biotoxin illnesses cause a lot of symptoms. With the number of symptoms I had, I would have been on pharmaceutical drugs for the rest of my life and my life expectancy was markedly shorter than I want it to be. Free market healthcare is a conflict of interest, and the proof is in the outcomes - when you address the cause people get better and then... they become medically liberated. That should be the goal. But insurance isn't what will help me do that. I It's a hard lesson to learn but it's the truth.

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Facebook, August 17, 2017 - I know I said I would step away from fb... but I feel so strong and good today that I had to say so! It's Friday so no IV this weekend - so my port got deactivated (needle out) so it's just my chest with a lump in it - no more flushes till it gets accessed again! AND I felt well enough to get mousey to the vet during their normal hours so it was only 8 mins away... AND they gave her medicine that helped her walk AND eat... AND be this delightful creature you see here, whom I have loved with all my heart for 12 years!!! I feel so so so relieved and happy. I learned about some additional treatment options for myself today which I feel very optimistic about and the only bad piece of news was that I have walking pneumonia BUT I feel so grateful and so hopeful at this moment that I am positive I'll fix that up in no time. 👌Thanks to everyone who has been reaching out to help in whatever ways they can and sending me so many good wishes - and especially thanks to Jody for helping me find some concrete options for help going forward here in Tampa. I really love you guys. PS look at this beautiful pain-free Mouse!!! Good night Facebook family 💚💚💚.

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Poor mouse

Facebook, August 17, 2017 - My dear Facebook family, I need to step away a little bit to focus on my health and my little mouse. She is having trouble walking again today, and I was too weak to take her to the vet, which was extremely hard to accept. I got her into her carrier and down to the street, but in the end I had to ask a stranger to help me get her back to my apartment. Once I had rested, I made her as comfortable as possible, with more medicine and her food and water and litter much closer. She and I will both go to sleep early now, and hope to wake up feeling new health and hope. It may be a while before you hear from me again but please keep us in your thoughts and prayers. You all are in ours, with such gratitude for your ongoing support during this challenging time. With love, Cherie