Casey's Road to Recovery
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Hi friends, family and to whom this may reach. My name is Casey Gwinn and I am currently fighting Interstitial Cystitis, Chronic Lyme with co infections of Bartonella, Babsia, Protozoa and extreme Mold Toxicity. I fight every day for life and most days stay dormant in my home as I am not able to do much. Many of you may have never heard of these diseases unless you know someone who has been diagnosed. Let me help you understand some of the symptoms I deal with on a daily basis.
I have severe Fatigue everyday with horrible nausea and headaches. I always have extreme bladder pains that shoot through my swelling pelvis into the bladder or urethra on a daily. Not able to pee without sharp pains and go like 40time a day. I get numbness and tingling in my toes, feet, legs and hands daily mainly at night. Also the terrible burning in my heels like they are on fire. Some days it makes it hard to walk on them. I am now dealing with anxiety spells when I get heart palpitations that shoot pain in my right shoulder. My spinal cord shoots pains as well like a nerve type pains through my back into my neck. I suffer from very high fevers about 5 nights a week where I wake up in puddles. That is if I ever sleep that week, I get horrible insonmia as well, some times for 7 days straight. I am suffering alot with brain fogs and confussion. I always feel as if I have strep throat because my lymph nodes are almost always swollen and pain or ringing in my ears. I just started with really bad air hunger mainly in the middle of the night as of there is no air to breathe and I wake up gasbing. This I just the frequent symptoms I get. These diseases were over looked for so long that it has literly taking every aspect of my body over in one way or another. I have an invisible illness that is very dangerous. I also have not shared this much about the impact my diseases have had on me to very many. Very few understand. Here is a little about all I have been through to get me to here.
I was not always sick I actualy lived a very normal life.
I was an outgoing person who loved to enjoy life and finally found my career calling. I worked 50hrs a week like most of you. I also loved spending the down time with my husband and family. I will never forgrt the day it started.I was away in upstate NY for work when I woke up extremely sick one morning in severe pain. I knew something was wrong so I rushed home 7hrs later to see my doctor. 4 month had passed of many doctor appointments and lots of labs and screenings to still not know what was happening to me. Finally was sent to a specialist who did an exploratory procedure that same week. I woke up to be told I had Interstitial Cystitis and my urethra and pelvis was very inflamed. I started treatments of many oral meds and anti-inflammation meds as well. For 6 months of these medications and things had gotten so bad that I could barely get into work most days and sometimes could not make it off the couch. I was wrapped into a ball in pain. So my urologist sent me off to a specialist out of Sinai Hospital. Our first appointment he had followed through all my papers and told me it was an advanced stages of Interstitial Cystitis and we had started extensive treatments and 9 surgical procedures with a regimen of 4 pelvic nerve blocks wkly for about 7 more months. Also in this time I had surgery to remove a lot of endometriosis that was found over the bladder liner and by my bowels. I noticed had a raise in symptoms and not sure why within these 7 months. The pain was becoming unbearable and spreading all over. I left to have a second opinion done with a woman specialist who mainly focused on Interstitial Cystitis. She proceeded to send me for more multiple testing and broke the news to my husband and I. I was told that I not only had severe IC but the labs showed I had Lyme, Protozoa, Bartonella and Babsia and that’s why I had pains that were moving throughout the body with no explanation. We had no clue what to expect but started more treatments. I was now on oral medication, Herbals and supplements. I also started bladder installations at home 2 times a day for the chronic infections. I was in treatment with her for about another 6months of these regiments before we had both relized that it was not helping me I had not felt any better and my body was in a weaker state of pure exhaustion. This disease had gone too far and my body was not responding well. The Lyme and co infections were now affection my nervous system and making it hard to remember anything. So my current doctor sent me to a wonderful integrative medicine and llmd specialist whom I am currently seeing. When we first saw her she ordered more extensive testing again and that’s when I found out more. I was suffering from extreme mold toxicity in the body. I literally broke down I didn’t think it was possible to find more infections in my body. I was then at rock bottom and too tired to fight for answers. My poor family and husband had spent tons of money and all our saving for all these treatment’s I had been through to find out that I couldn’t fight the infection because my body is overran by mold toxicity. We had no choice and listened to my doctor who recommended that I go on iv picc line infusion treatments daily. She said my kidney and liver had taken a beaten already with all the pills and that we needed to go straight to the blood stream with medications. So I was sent over to Suburban Hospital to have my Picc Line Placed and started treatments. One month had passed and I ended up with a blockage in my line and it was backing up in my shoulder. So I ended up at hospital to have old line pulled and new location set.
So I am currently in Extensive IV treatments about 6-7 hrs daily depending on the daily meds not counting also still on lots of oral medication, supplements, and detoxing regiments daily. I am still in need of my IV treatments for at least an estimate of 8-11 more months but we are no longer able to afford them. My husband is now the only income because of how debilitating these diseases have been. My treatments with all included cost us an average of $1480 every Month. We have drained our entire 401k, savings and our poor parents. These past 2 1/2yrs have been very difficult on us physically and financially. We never thought we would have to rely or ask for financial help just to give me life again. We have stretched our finances to the max with no more room for bills and medical. At this point we must set our pride aside if we ever want the possibility of recovery for me. We are asking you to please share our story to help me further my treatments. Thank you dearly for taking time to read about my medical journey.
I have severe Fatigue everyday with horrible nausea and headaches. I always have extreme bladder pains that shoot through my swelling pelvis into the bladder or urethra on a daily. Not able to pee without sharp pains and go like 40time a day. I get numbness and tingling in my toes, feet, legs and hands daily mainly at night. Also the terrible burning in my heels like they are on fire. Some days it makes it hard to walk on them. I am now dealing with anxiety spells when I get heart palpitations that shoot pain in my right shoulder. My spinal cord shoots pains as well like a nerve type pains through my back into my neck. I suffer from very high fevers about 5 nights a week where I wake up in puddles. That is if I ever sleep that week, I get horrible insonmia as well, some times for 7 days straight. I am suffering alot with brain fogs and confussion. I always feel as if I have strep throat because my lymph nodes are almost always swollen and pain or ringing in my ears. I just started with really bad air hunger mainly in the middle of the night as of there is no air to breathe and I wake up gasbing. This I just the frequent symptoms I get. These diseases were over looked for so long that it has literly taking every aspect of my body over in one way or another. I have an invisible illness that is very dangerous. I also have not shared this much about the impact my diseases have had on me to very many. Very few understand. Here is a little about all I have been through to get me to here.
I was not always sick I actualy lived a very normal life.
I was an outgoing person who loved to enjoy life and finally found my career calling. I worked 50hrs a week like most of you. I also loved spending the down time with my husband and family. I will never forgrt the day it started.I was away in upstate NY for work when I woke up extremely sick one morning in severe pain. I knew something was wrong so I rushed home 7hrs later to see my doctor. 4 month had passed of many doctor appointments and lots of labs and screenings to still not know what was happening to me. Finally was sent to a specialist who did an exploratory procedure that same week. I woke up to be told I had Interstitial Cystitis and my urethra and pelvis was very inflamed. I started treatments of many oral meds and anti-inflammation meds as well. For 6 months of these medications and things had gotten so bad that I could barely get into work most days and sometimes could not make it off the couch. I was wrapped into a ball in pain. So my urologist sent me off to a specialist out of Sinai Hospital. Our first appointment he had followed through all my papers and told me it was an advanced stages of Interstitial Cystitis and we had started extensive treatments and 9 surgical procedures with a regimen of 4 pelvic nerve blocks wkly for about 7 more months. Also in this time I had surgery to remove a lot of endometriosis that was found over the bladder liner and by my bowels. I noticed had a raise in symptoms and not sure why within these 7 months. The pain was becoming unbearable and spreading all over. I left to have a second opinion done with a woman specialist who mainly focused on Interstitial Cystitis. She proceeded to send me for more multiple testing and broke the news to my husband and I. I was told that I not only had severe IC but the labs showed I had Lyme, Protozoa, Bartonella and Babsia and that’s why I had pains that were moving throughout the body with no explanation. We had no clue what to expect but started more treatments. I was now on oral medication, Herbals and supplements. I also started bladder installations at home 2 times a day for the chronic infections. I was in treatment with her for about another 6months of these regiments before we had both relized that it was not helping me I had not felt any better and my body was in a weaker state of pure exhaustion. This disease had gone too far and my body was not responding well. The Lyme and co infections were now affection my nervous system and making it hard to remember anything. So my current doctor sent me to a wonderful integrative medicine and llmd specialist whom I am currently seeing. When we first saw her she ordered more extensive testing again and that’s when I found out more. I was suffering from extreme mold toxicity in the body. I literally broke down I didn’t think it was possible to find more infections in my body. I was then at rock bottom and too tired to fight for answers. My poor family and husband had spent tons of money and all our saving for all these treatment’s I had been through to find out that I couldn’t fight the infection because my body is overran by mold toxicity. We had no choice and listened to my doctor who recommended that I go on iv picc line infusion treatments daily. She said my kidney and liver had taken a beaten already with all the pills and that we needed to go straight to the blood stream with medications. So I was sent over to Suburban Hospital to have my Picc Line Placed and started treatments. One month had passed and I ended up with a blockage in my line and it was backing up in my shoulder. So I ended up at hospital to have old line pulled and new location set.
So I am currently in Extensive IV treatments about 6-7 hrs daily depending on the daily meds not counting also still on lots of oral medication, supplements, and detoxing regiments daily. I am still in need of my IV treatments for at least an estimate of 8-11 more months but we are no longer able to afford them. My husband is now the only income because of how debilitating these diseases have been. My treatments with all included cost us an average of $1480 every Month. We have drained our entire 401k, savings and our poor parents. These past 2 1/2yrs have been very difficult on us physically and financially. We never thought we would have to rely or ask for financial help just to give me life again. We have stretched our finances to the max with no more room for bills and medical. At this point we must set our pride aside if we ever want the possibility of recovery for me. We are asking you to please share our story to help me further my treatments. Thank you dearly for taking time to read about my medical journey.
Organizer
Casey Gwinn
Organizer
Boonsboro, MD