Lyme Branch Founders
"What do you do when life hands you Lymes..."
Hi! My name is Amanda Raccuglia (aka Lilly). My story is long so grab a bag of popcorn and pop a squat in a comfy chair!
My story begins when I spent my summers by Bull Shoals Lake at my Aunt Pat's farm. We would hike out in the woods on a daily and come out with ticks on us 90% of the time. Back then no one thought of Lyme Disease. They were only worried that we would get Rocky Mountain Spotted Fever, never Lyme. So, up until I was 16 I was out there every summer. It was great fun to go hiking, canoeing, white water rafting and camping on the farm.
I always had aches and pains in my joints and always felt tired, I just thought this was normal and I did not complain much about it. I played softball, soccer, volleyball, basketball and ran track for Mansfield & the Lady Tigers the better part of my youth to teenage years. An all american that made good on getting scholarships to fund my passion to be a medical research scientist. I had BIG dreams and huge aspirations for myself, but I never got that far.
When I was 16 I had my first laparoscopic procedure for endometriosis. It was then, I was told I would never have children because of the extent of the damage done by the endo. I of course coming from a large family was totally devastated by the news. Came to grips with the reality of the situation and marched on like any good solider would.
By my 20's I had numerous lap procedures done and no signs of the endo going away, but in 1997 a miracle was born. I did get pregnant with my first daughter and I was ecstatic that I would have at least one miracle baby. The pregnancy itself was pretty good for being my first and I did have alot of anxiety but that was to be expected. During the birth was a different story, it was barbaric. Like traveling back in time to medieval days. After 121 stitches, 4 metal buckets under me (I will let your imagination run wild on what they were full of), Demerol being sucked out of the pores of my left arm and a blood transfusion, I was finally a mother.
After the birth of my daughter I started back to college and started to notice that alot more was going on than before. I started to become clumsy (which I was not before...very graceful lol), speech impairments, major anxiety issues, memory loss
(My saying "I forget.... until I remember!"),
reoccurring pneumonia, bronchitis, kidney/bladder/UTI infections, swollen lymph nodes, toxic shock and many other symptoms.
During this time I had 14 miscarriages and numerous D&C's. Most of the babies I lost were during the first trimester but towards the end I carried two back to back to 6 mths and one to 6.5 mths. The loss of these two babies at that stage completely broke me. I slipped into the worst darkness I have ever faced. I was not sure if I would ever pull myself out of it. I took this depression to a deep dark place and I had convinced myself I did not want to live anymore. If it weren't for the love of my life swooping in to save me, I would not be writing this today.
Moving on up to 2005, I got pregnant again and I was bound and determined not to loose this baby. I went to see a maternal fetal specialist in Fort Worth, TX. After genetic testing I was told I had the MTHFR gene mutation ( http://ghr.nlm.nih.gov/gene/MTHFR) and a blood clotting disorder. I was put on heparin injections right away and monitored closely. He explained to me that the reason I miscarried all those times before is because I was passing a blood clot to the babies.(I know now its because I had Lyme to) I gave birth to a healthy baby girl in July of 2005.
Things seemed to be looking up for me for awhile as things had mellowed a bit. I was still having symptoms but I had learned to deal with the pain and brain issues. In 2006 things changed again. I was at work and people kept telling me I was not looking well and they were right, I had not been feeling well for the last two weeks and it seemed to be getting worse. I had lost 11lbs in a week, I knew this was not normal. While I was at work that day I was walking up to HR and I just fainted. The medics at our facility called an ambulance and off I went.
The doctors told me I was pregnant but only a couple of weeks along. I had them call my specialist and he came to the rescue. I was diagnosed with Hyperemesis Gravidarum (http://www.helpher.org/). I was told it would only last till 18 wks tops, man were they wrong! I was placed with a PICC line and given TPN (Total Prenatal Nutrition) through the PICC line 24/7. I could not eat or drink ANYTHING! No water or food could touch my mouth or I would be sick. I had a pump in my leg feeding me zofran continuously 24/7. I had a nurse that came everyday to change my TPN and to check on me. I reached a point when my body started to shut down, it just could not sustain two lives like this anymore. I had a fever over 107, my brain was frying like an egg on a hot summers day. My organs were systematically shutting down and I was on the outs. When I arrived at the hospital I was packed in ice for three days, I was delirious and hallucinating. I don't remember a whole lot. I do know it was close to Christmas Eve and I was taken out of the "ice bed" and I was being given strong antibiotics to try and fix whatever was wrong. My guess is that they had no idea. The doctor informed me that he did not think I would make it through the night and wanted to know if I would consider ending the pregnancy. I was mortified at the suggestion and told him to send me home to die around my family. He refused so I just signed an AMA and was outta there, but he did not give up on me and sent my nurse with orders for vancomycin balls. I was to be given one ball every two hours for a whole day (It was a last ditch effort).
That was one of the scariest moments in my life, not knowing if I was ever going to meet my son or see my babies ever again. Words can not describe the emotional impact that has on someone. I had made my peace with God that night and asked him to take me only if it was the right time and my time on Earth was done and I had fulfilled my purpose here. I woke the next morning with tears in my eyes knowing he had heard me and he was telling me that I was not done yet. A true blessing. In April of 2007 my son was born.
Immediately following the birth of my son my body soon went into total chaos mode. I had six surgeries to fix the damage that had been done to my body while being pregnant with him. I had my gallbladder removed, bladder sling placed and a total emergency hysterectomy. My health truly declined even more after this point. My symptoms became more intense and I was struggling.
In 2010, we moved back to Louisiana were my husband is from and I thought things were starting to get a little better, then BOOM! A landslide of events started and there has been no stopping since.
Shortly after moving there I developed a welt like rash on my arm but it did not hurt or itch. I went to see my doctor about it and we tried everything to get it to go away but it wouldn't. My lymph nodes had also become swollen and would not go away. While I was hiking in the back of our house I was bit by a tick and did not notice it till alot later. This brought on an onslaught of symptoms that left me lifeless.
Endless doctors telling me I am crazy and its all in my head was enough to drive me crazy. I knew something was really wrong and after all the endless tests and procedures I still did not know anything. I finally saw an Infectious Disease doctor that had the welts biopsied and it came back 100% positive for Lupus.
I was ecstatic to finally have an answer but when the meds stopped working a few months later I knew something else was still wrong. None of my doctors wanted to hear this, they really thought I was crazy then, and I was seriously ticked off!
So as my lovely co-founder Kim (Astrid) states in her bio she posted a video of "Under Our Skin" and I bawled like a baby through the whole thing. Blurting out "This is me, This is me!" I could not contain myself when I was telling Kim all about it. She reached out to me and extended a helping hand that saved my life. As Kim states it was a huge leap of faith to go out on a limb and see if this is what I really had all along.
I took that helping hand and she helped me through one of the most challenging times in my life. I took the labs for Igenex and sent them off and by a small twist of fate I did not get my results before heading to my appointment with the LLMD Kim was seeing to. So, on 11-6-2013 I met my long lost friend once again.
We sat and waited in the room trying to catch up on old times when the doc came in to deliver my results. As I was sitting on the table and Kim holding my hand we heard him say under his breath "Jesus". I looked at Kim and I was mortified. She started crying and I am like "WHAT!" I must have missed after that "Jesus" that the doctor said I was CDC positive for acute & chronic lyme disease. He looked at us and told me I was a very, very ill lady. I was in total shock, the rest of the appointment was a total daze for me. I could not comprehend after all these years I had an answer to all my problems, all my symptoms and to top it off I was sitting in front of the man who was going to make it all better for me.
The moment was truly life altering and since then it has been Kim & I's goal to pay it forward and extend that helping hand to others like us who are suffering and who are lost. That is how Lyme Branch came to be, two girls wanting to extend a "Lyme Branch" to others in need.
That's my story in a nutshell, and if you have any popcorn left over...PLEASE SHARE! :)
Peace, Love and Sunshine!
Hello! My name is Kim Lumley (aka Astrid, Little Kim Sunshine) and I am 36 years old. I have been sick off and on my entire life. When I was 8 years old in 1985 in a suburb of Ft.Worth, TX, I contracted Cat Scratch Fever. The lymph nodes were so large and inflamed under my left arm that I was unable to lower my arm and I had fever and flu-like symptoms for 1-2 weeks. I was treated with antibiotics for 7 days and the lymph nodes decreased somewhat and the doctor thought that I had been adequately treated for Cat Scratch Fever, which is caused by the Bartonella bacteria. Little was truly known about CSF and now we know that I could’ve contracted Lyme Disease at that point via a cat scratch and/or a tick bite. Insects and animals can carry Lyme Disease among numerous other co-infections. I was always tired growing up and just could’t ever get going like other teenagers around me. I had awful endurance and always had really bad bone pain and muscle cramping.
Fast forward to 1999, following the birth of my daughter, I was hospitalized after having a grand mal seizure. I went on to undergo years of testing and medication trials. Eventually, the seizures became something referred to “absent seizures” whereas I would just zone out and lose my bearings for 5-10 minutes. The seizures and symptoms seemed to finally be under control with the use of Carbatrol, and anti-convulsive medication, and Celexa, an antidepressant. I went on to graduate college and began my teaching career in 2001. I was virtually symptom free for many years, other than the perpetual exhaustion and some memory/concentration problems. In October 2006, I had a miscarriage at 6 weeks and it kinda came and went. In May 2007, at 12 weeks pregnant, an ultrasound revealed that the heart had stopped a week earlier in my unborn baby. I was devastated and so incredibly confused. I was immediately scheduled to have a D&C, Dilation and Curettage, a procedure where the cervix is widened and the walls of the uterus are scraped to remove the fetus. I was under general anesthesia for roughly 30 minutes. The tissues were sent for examination and it was determined that the baby was healthy, but something must have been wrong so the baby couldn’t thrive. Following surgery upon returning home, I had awful mood swings, crying fits, and global amnesia. I could no longer remember how to get to my house nor which light switches controlled what lights in my house that I had lived in for more than 2 years.
My husband, at the time, and I left a week later to go on a camping trip in Arkansas. We were outside for the better part of 7 days and while camping in White River, AK, I was bit on my left hip. There was a small raised bump. It hurt and had a little fever in it, but there was no “bulls-eye” rash nor other symptoms. We returned home in mid June, but I never returned to “normal.” My brain had become so scattered, I would forget full conversations, my own birthday and everything else. I had the worse ADHD you could imagine and the mood swings persisted. Years after seeing every kind of medical specialist imaginable, multiple hospitalizations (4-5 I believe)…I was eventually diagnosed with Fibromyalgia and Narcolepsy. My problems persisted and I continued to deteriorate. I had been to the Mayo Clinic in Rochester, MN and the Amen Brain Clinic in Newport Beach, CA. There were strange findings at both facilities, low ferritin iron, brain toxicity, etc, but there was never a diagnosis, just random findings.
As time marched on, I began to exhibit more and more symptoms. By far, my worst symptoms were all cognitive, but my body began to ache and squeak and it was relentless. My neck, my hips, my shoulders were so horribly arthritic that I could no longer sleep at night and moved like an elderly woman during the day. But, somehow, according to others, including my doctors, I “didn’t look sick”, there was nothing wrong with me, and it was all in my head. I must just be depressed is what I was told over, over, and over again. But, I wasn’t depressed, I was dying and losing hope and all faith in the medical community and the Lord, for that matter.
In April 2013, after months of chronic pain, sleepless nights, full-time parenting and working as a teacher, volleyball coach, and Special Olympics coach, my body gave out. On a fateful Thursday night, after putting my children to bed, I slowly shuffled my feet into my bedroom. I was a mere 2 feet from my bed and my body totally froze, became rigid, and I collapsed on the carpet. I was crying and shaking and begging for mercy. I said aloud, “Lord, we’ve been here before. i have asked you time and time again to help, to intervene, to guide me, to strengthen me. There is nothing left, Lord. I have nothing. I can’t go on. I can’t live like this. I quit. I have written letters to my children and family and I will never know what took me before my time, but please take me to Heaven to be an angel and to serve you there….”
I paused and being a very stubborn woman, a fighter, a warrior, I then said, “BUT…if you know that my work is not done here on Earth, you have to grant me strength and guidance. I have none of either of them left in my heart, soul, spirit or body. I need you to work in my life. I don’t need you to miraculously heal me overnight, I need you to show me a path, I need something." I passed out from exhaustion on the floor of my bedroom as my children sleep peacefully in their beds and my husband was away on business. I woke up on Friday morning! I took the kids to school, taught the entire day, came home, curled up on the couch and grabbed my iPad. A newcomer to Pinterest, I was looking for some way to help my aching body feel better. I searched “Homeopathic Bath Soaks” and within a minute or so, I found a pin for a documentary film called “Under Our Skin.” The cover had a picture of a young, blonde girl just like me, with piercing blue eyes, coming out of blue water.
I clicked on the pin, watched the trailer, and then watched the movie right then on my couch on You Tube. The opening scene showed the main character, Mandi, walking across her front yard, her body seized up and she went to the ground, just like I had the night before…I said, “Oh my God…I have Chronic Lyme Disease.” And I sure did. I contacted Igenex labs in Palo Alto, CA and they sent me a test kit. I took the kit to a walk-in lab in Austin and begged the director to contact the overseeing physician to sign my orders. I was crying and desperate, I was not under a physician’s care any longer. THEY had all given up on me and I, in turn, gave up on all of them. The overseeing physician agreed to sign the orders and signed them from his phone on the golf course. On July 3, 2013, I received a copy of my lab results and I was off the charts positive for Chronic Lyme Disease. Using an “underground” online network, I was given a list of Lyme Literate Medical Doctors in the South. There were very few and the movie “Under Our Skin” explains why there are not a wealth of physicians willing to test, diagnose, and treat Chronic Lyme Disease.
I had contacted a specialist in a neighboring state way before I had received my lab results because I knew there would be a long waiting list. Alas, my appointment was scheduled for August 14, 2013. The night before my appointment, I posted this video on Facebook and Amanda, the co-founder of Lyme Branch, watched the video and we immediately began texting. She, too, had been gravely ill. She, too, had been misdiagnosed, and was dying. Amanda and I had grown up together and lost touch over the years as our lives took us to two totally different directions. I begged Amanda to take my hand as I extend her this "Olive Branch” to Lyme Disease Awareness. She was suffering so much and so desperate, just like I was…she took the leap of Faith and we got her tested. On November 6, 2013, we reunited after 18 years and I sat in my…our doctor’s office and held her hand as the doctor told her she was CDC positive for Chronic Lyme Disease. I began to cry and I was covered in chills. Amanda was in absolute shock and remained in that state of shock for many, many days. She took my hand and I led her to answers, just like the Lord took my hand and led me to answers in April 2013.
We are both undergoing intensive antibiotic treatment as well as IV, infusion therapy through a port leading to our heart. Amanda, in Louisiana, and Kim in Texas have joined forces to spare others their lives…we extend you this Lyme Branch and ask that you keep paying it forward, keep reaching out, keep extending your hand to others suffering and dying needlessly from this devastating and deadly disease.
“Take My Hand, Beloved One, we will walk the rest of the way together.”