Help me take back my life
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However you stumbled upon this page - thank you for being here, here is my story...
For too many years, I have been stubborn when it comes to accepting help. But this disease has completely taken away my life, and is only going to cause further damage if I do not reach out for help and finally try to beat this with anyone's help possible.
This plea for help is to anyone who may know me or not - I am a 27-year-old solo mother who has run out of hope.
At 21, I was lethargic, stuck on the couch with my 2-year-old coloring on the walls and I could not even lift my phone to ask for help. The emergency room ran tests for brain tumors because of my seizure-like muscle spasms and pounding head. I could not get off the couch for a week when they called me confirming I had Lyme Disease. I was given a month of antibiotics and told to ask for more if I did not feel better, but when I did call back for more, they told me Lyme simply would always be present in blood tests from now on and they do not give further treatment, so I went on with my life.
Over the next few years, my life fell apart. I stopped being able to leave my bed unless it was for work or a planned activity and even then, I would sometimes cancel. I stopped being able to take my daughter outside most days without having a Lyme flare for a week. In the last two years, I have developed a heart condition called Postural Orthostatic Tachycardia. My heart will spontaneously shoot to 150 beats per minute and drop to 50 beats within seconds and I pass out. This condition is brought on by standing, heat, or stress. I have learned it is caused by my co-infection, Babesia. My heart condition has taken a huge toll on me in the last year. It is exhausting just to shower, and I know that sounds pathetic, but try to imagine keeping up with an 8-year-old and having your heart continuously attacking you. Not to mention how dangerous this is. Babesia is a malaria-like parasite that has invaded my red blood cells. Randomly almost every day, you will see a red rash spread across my face and chest. It is coupled with sporadic fevers. Babesia can cause acute respiratory failure, adrenal failure (which is hard enough already having Kidney Disease) & liver failure. The fatality rate is 20%, but keep in mind this is just one of my co-infections with Lyme. It is not my only one, and Lyme has completely torn apart my bodies ability to defend itself.
They call Lyme the imitator, because so many people are misdiagnosed with Fibromyalgia, MS, ALS, Parkinsons, Alzheimers, and so much more...when the root problem is Lyme Disease. I currently suffer from Polycystic Kidney Disease, Chronic Lyme Disease, Postural Orthostatic Tachycardia, Fibromyalgia, Chronic Fatigue Syndrome, Migraines, Depression, Anxiety, Vertigo, Reynauds, Cognitive impairments and a million symptoms I won't get into that are all being caused by Lyme besides my Kidney Disease. I pay hundreds of dollars a month for multiple medications that insurance will not cover. I am on over 20 oral medications a day, which will take years to see any improvement at all. I have been doing this for over a year, and getting worse. I have declined in health enough to know that I need to ask for help. I can't continue putting on a smile every day and going to work and acting like everything is fine. I am attached to my bed because it physically hurts me to be awake, I desperately need to know that I can have my life back because right now, I am not living, I am hanging on to hope and suffering. I want to say the hardest part is not being able to be active with my daughter the way I used to thrive, but to be honest the worst part is the absolute terror I feel regarding my health. I don't know how many times in the last few months I have turned to someone close to me and told them with tears in my eyes that I know I am dying. I can feel my body running out. Invisible illnesses are so heartbreaking, because I CHOOSE to be a positive and bubbly person, but unfortunately along with that comes no one taking me serious. No one understands or really knows how sick I really am because I will literally smile and tell you I am fine until I pass out. I can't live like this anymore. I am terrified of when my heart is going to finally give out, and I am so tired of my body attacking me.
A Picc line looks like an IV, and threads a catheter directly to my heart where it will bring the medicine to be pumped throughout my body. These are $1000 a month, and insurance will not cover the medications I need, which is usually needed for at least a year, sometimes longer. This battle gets far worse before it will get better. A herxheimer reaction is what occurs during the treatment of Lyme disease and its co-infections. The common misconception is that when a patient is treated with meds, it should be all uphill from there. Medication should make you feel better, right? Very wrong. When spirochetal bacteria (like Lyme) is killed off, it releases a massive load of toxins in the body. These toxins are "neurotoxins" and "endotoxins", which putting it simply means that it is a toxin to the brain and the patients' organs. Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process (hence the need for tons of detox supplements, herbs, and strict diet). Herxing can cause a whole host of symptoms, ranging from seizures, migraines, excruciating pain, dizziness, relentless hours of crying, anxiety, heart rate issues, pain, inability to breathe, insomnia, episodes of rage, confusion, memory loss, and much, much more. This, therefore makes Lyme treatment grueling, and very similar to cancer treatment with chemotherapy.
I am now 27 (going on 92) and have been raising my 8-year-old daughter as a solo parent. I am fiercely independent, but I need let that go and reach out. I don't know if I will ever be able to come even close to raising enough to get any type of treatment, and if I do I know it will most likely take a long time - but I have to try. Thank you so SO much for taking time out of your day to visit this page and if you do donate or even just share this page and please give any good vibes and hope possible it would be absolutely the world to me. I can't do this alone, anything will help get me closer to getting this disease out of my body and having a chance. Thank you again.
For too many years, I have been stubborn when it comes to accepting help. But this disease has completely taken away my life, and is only going to cause further damage if I do not reach out for help and finally try to beat this with anyone's help possible.
This plea for help is to anyone who may know me or not - I am a 27-year-old solo mother who has run out of hope.
At 21, I was lethargic, stuck on the couch with my 2-year-old coloring on the walls and I could not even lift my phone to ask for help. The emergency room ran tests for brain tumors because of my seizure-like muscle spasms and pounding head. I could not get off the couch for a week when they called me confirming I had Lyme Disease. I was given a month of antibiotics and told to ask for more if I did not feel better, but when I did call back for more, they told me Lyme simply would always be present in blood tests from now on and they do not give further treatment, so I went on with my life.
Over the next few years, my life fell apart. I stopped being able to leave my bed unless it was for work or a planned activity and even then, I would sometimes cancel. I stopped being able to take my daughter outside most days without having a Lyme flare for a week. In the last two years, I have developed a heart condition called Postural Orthostatic Tachycardia. My heart will spontaneously shoot to 150 beats per minute and drop to 50 beats within seconds and I pass out. This condition is brought on by standing, heat, or stress. I have learned it is caused by my co-infection, Babesia. My heart condition has taken a huge toll on me in the last year. It is exhausting just to shower, and I know that sounds pathetic, but try to imagine keeping up with an 8-year-old and having your heart continuously attacking you. Not to mention how dangerous this is. Babesia is a malaria-like parasite that has invaded my red blood cells. Randomly almost every day, you will see a red rash spread across my face and chest. It is coupled with sporadic fevers. Babesia can cause acute respiratory failure, adrenal failure (which is hard enough already having Kidney Disease) & liver failure. The fatality rate is 20%, but keep in mind this is just one of my co-infections with Lyme. It is not my only one, and Lyme has completely torn apart my bodies ability to defend itself.
They call Lyme the imitator, because so many people are misdiagnosed with Fibromyalgia, MS, ALS, Parkinsons, Alzheimers, and so much more...when the root problem is Lyme Disease. I currently suffer from Polycystic Kidney Disease, Chronic Lyme Disease, Postural Orthostatic Tachycardia, Fibromyalgia, Chronic Fatigue Syndrome, Migraines, Depression, Anxiety, Vertigo, Reynauds, Cognitive impairments and a million symptoms I won't get into that are all being caused by Lyme besides my Kidney Disease. I pay hundreds of dollars a month for multiple medications that insurance will not cover. I am on over 20 oral medications a day, which will take years to see any improvement at all. I have been doing this for over a year, and getting worse. I have declined in health enough to know that I need to ask for help. I can't continue putting on a smile every day and going to work and acting like everything is fine. I am attached to my bed because it physically hurts me to be awake, I desperately need to know that I can have my life back because right now, I am not living, I am hanging on to hope and suffering. I want to say the hardest part is not being able to be active with my daughter the way I used to thrive, but to be honest the worst part is the absolute terror I feel regarding my health. I don't know how many times in the last few months I have turned to someone close to me and told them with tears in my eyes that I know I am dying. I can feel my body running out. Invisible illnesses are so heartbreaking, because I CHOOSE to be a positive and bubbly person, but unfortunately along with that comes no one taking me serious. No one understands or really knows how sick I really am because I will literally smile and tell you I am fine until I pass out. I can't live like this anymore. I am terrified of when my heart is going to finally give out, and I am so tired of my body attacking me.
A Picc line looks like an IV, and threads a catheter directly to my heart where it will bring the medicine to be pumped throughout my body. These are $1000 a month, and insurance will not cover the medications I need, which is usually needed for at least a year, sometimes longer. This battle gets far worse before it will get better. A herxheimer reaction is what occurs during the treatment of Lyme disease and its co-infections. The common misconception is that when a patient is treated with meds, it should be all uphill from there. Medication should make you feel better, right? Very wrong. When spirochetal bacteria (like Lyme) is killed off, it releases a massive load of toxins in the body. These toxins are "neurotoxins" and "endotoxins", which putting it simply means that it is a toxin to the brain and the patients' organs. Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process (hence the need for tons of detox supplements, herbs, and strict diet). Herxing can cause a whole host of symptoms, ranging from seizures, migraines, excruciating pain, dizziness, relentless hours of crying, anxiety, heart rate issues, pain, inability to breathe, insomnia, episodes of rage, confusion, memory loss, and much, much more. This, therefore makes Lyme treatment grueling, and very similar to cancer treatment with chemotherapy.
I am now 27 (going on 92) and have been raising my 8-year-old daughter as a solo parent. I am fiercely independent, but I need let that go and reach out. I don't know if I will ever be able to come even close to raising enough to get any type of treatment, and if I do I know it will most likely take a long time - but I have to try. Thank you so SO much for taking time out of your day to visit this page and if you do donate or even just share this page and please give any good vibes and hope possible it would be absolutely the world to me. I can't do this alone, anything will help get me closer to getting this disease out of my body and having a chance. Thank you again.
Organizer
Alissia Glitch Guest
Organizer
Nashua, NH