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Life in Lyme Light Posts

Story 12

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How has Lyme Disease affected your life?

My Lyme story is long but the abbreviated version is that I have been really sick on and off for the past 25 years. At 12 years old I was diagnosed with Fibromyalgia. Now it is thought that it is more likely that I contracted Lyme disease at age 12 as I got bit by multiple ticks in my youth. I was treated for acne at age 15 with long term Tetracycline and started to function better and was able to live a relatively normal life. During this time I was sicker than most and always very tired. I also had a lot of pain in my body, mostly in my back and neck.

In February 2011 I woke up with incredible pain in my thoracic spine. As a result of trying to fix the pain I have three major spine surgeries (ACDF 5-7 that was revised again levels 5-6 and an 8 level thoracic fusion) with no pain relief. Through all of this I continued to get sicker and was unable to work as of October 2012. I have been on over 30 different medications trying to reduce the pain. Other symptoms over the past three years have been blurry vision, fatigue, memory loss, Bell’s Palsy, severe joint pain, trouble walking, tremors, rib pain, gastrointestinal problems, and depression due to all the pain.

Over the years I have had several Lyme tests and always had multiple positive bands but not enough to be CDC positive. In June of 2014 I tested positive through IGeneX. I have started on a long term treatment protocol which includes oral and IV antibotics. I have been diagnosed with late stage neurological Lyme (Borrelia) disease, Babesia, and Bartonella. My prognosis is that the treatment will take a long time and be difficult since I have had the bacterial and parasitical infections for 25 years. I struggle daily with extreme pain and fatigue. Every day is a challenge to get through and stay positive that I will someday feel better. I feel like I am a shell of the person I once was. Lyme disease hurts not only the patient but the whole family. It robs us of our spirit and passions.

What inspires you?

I am inspired to fight to make a difference in the Lyme community and to help spread awareness of the disease. I believe that something good must come out of all this suffering.

My favorite quote or inspiration as of late comes from the song Fight Song by Rachel Platten:

“This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
(Starting right now) I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me”

I listen to this all the time when I am struggling and need a boost!

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Story 11

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How has Lyme Disease affected your life?

I have had Lyme Disease for around 3-4 years. It started with aches, pains, inexplicable weight loss, anxiety and migraines. I was diagnosed 15 months ago, at 5’8″ and 82 lbs and have been in treatment for 14 months. Treatment for me has involved removing gluten from my diet (along with half a dozen other staple foods) over 9 months of oral antibiotics, 6 months of IV antibiotics via PICC line, and 40-50 pills a day of vitamins, herbs, mushrooms, etc. Treatment is rough, but much better than being told “there’s nothing wrong” and “it’s fibromyalgia- deal with it” or my favorite “you have an eating disorder.”

What inspires you?

The thought of life beyond Lyme. I have a very clear picture in my head. It’s sunny and warm. It’s the summer so I don’t have to work because I’m a professor. I’m with my boyfriend (my rock and motivation when I’ve got nothing left inside me) and our dog is running in the yard. I can get up and chase the dog. I can go for long walks at sunset. There’s no barf bucket in sight and I’m not constantly checking my watch to see when I have to take pills again. It’s simple but it’s inspiring.

I don’t do a lot of heartfelt motivation. We approach everything with humor, from midnight emergency PICC dressing changes, to fighting over the bathroom because my enema just can’t wait any longer. So my quote would have to be how I approach dealing with everyone who doesn’t understand Lyme: “God, grant me the serenity to not shank a fool today.” – Anonymous

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Story 10

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How has Lyme Disease affected your life?

I was 16 years old. An athlete. Honor roll student. Student pilot. I had big dreams for my future. Then I got sick. The first doctor told me, “I’m not sure why this is happening. We will do whatever it takes to find out.” He passed me off to another doctor. The second doctor told me, “The 50 tests we did came back normal. See a shrink. You will be like this the rest of your life.” The third doctor told me, “It’s probably a virus. You’ll be better in six months.” I waited. I wasn’t.
Specialist after specialist said, “This is not my problem. Do not come back.” I thought I was dying, but after countless tests and scans no one wanted to help me.

It has been over 8 years since my health crashed. I can’t work. I can’t continue my education. I can’t even leave the house most days. I finally have a name for the monster I’m fighting: Lyme disease. Along with that diagnosis came multiple co-infections.

Everything has changed and it will NEVER be the same.

What inspires you?

I take things one day at a time. Having hope that one day I’ll have my life back is too painful at the moment, so I just try to find one good thing each day-petting a dog, favorite TV show, etc.

“On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that is pretty good.” – Anonymous

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Story 9

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

My story to tell – Everybody has a story, something they battle with and I love hearing them. There is so much to learn from someone who has had a trial and becomes stronger; it explains who they really are and why they believe the way they do. I love connecting with people who will open their heart to me, share their story so I can become a better person. Through these stories we can find hope, peace, knowledge and the fight we didn’t know we had to get through our own trials. I want to share my story so I can be reminded of my fight but more importantly I want to help someone else who needs strength to get through their battle.

Let me give you a little background: I have played sports my entire life. I thrive on working out and working hard. I am competitive. I am fit but I have always struggled with what I wanted my weight to be and my body to look like which has caused some self-perception distortions as well as an emotional relationship with food. I played college volleyball then got my BA in Physical Education and Health, taught high school and coached for years in Utah. I got married and had 3 kids during the span of 8 years then in August of 2008 we moved to WI from Utah and this is where I will begin…

Although I don’t remember when “it” started I do remember approximately one year after living in WI, I noticed a drop in energy. I remember laying on my living room floor feeling so exhausted I wanted to do nothing; no ambition, no motivation and no energy which was very unusual for me. I would lay there and think, “What is wrong with me? This is not normal. I don’t like this; I’ve got to get up and get going!” so I did. Every day I would go to the gym even if I was tired because I thought if I didn’t work out I would gain weight. If I gained weight I would get fat and I dreaded the thought of that and what came with getting fat.

I had three kids and knew that being a mother was tiring but this exhaustion seemed different yet I didn’t have any reason to think that anything was really wrong. The bouts would come every month for 5-6 days then I would go back to normal for 3 weeks. Life continued, I got pregnant with my 4th child and I continued being very active, working out daily and going 24-7 despite my lack of energy or my bummed left knee that would always hurt. I wasn’t going to let the exhaustion or bummed knee get to me.

When my baby was 18 months old we moved to a new house and new neighborhood and I found myself on the floor more often. I also noticed that my period was different which was very unusual and although I was working out and eating healthy I could not get rid of 5-7 lbs that I typically could get off when I focused on my eating and working out a little more. I brought it up to my OB during a visit but he didn’t seem to think it was anything to be concerned about. Once again I brushed it off but deep down I knew something was wrong. Around this time (October) I was introduced by a friend and neighbor to Nutritional Cleansing. I noticed she lost her baby weight and some, looked healthy and energetic and I wanted to know what she was doing. Isagenix and Nutritional Cleansing was something I hadn’t heard before and although I was very curious and I trusted her I was VERY skeptical so I began to ask a lot of questions and do a lot of research on my own. I was looking for answers: more energy, better control with my eating, weight loss, something (but not just anything) and this was my answer.

After 2 months of research I was ready. I ordered my first cleanse and did the 11 days over Christmas break, talk about discipline! On my first cleanse day I actually threw up and didn’t have a lot of energy so when I called my friend to ask if this was normal she was a bit surprised and told me throwing up wasn’t – I chalked it up to catching a bug from the kids and continued to push through my cleanse. I actually loved it. I loved the discipline although it was challenging. I loved how lean I felt and even more I loved what I was learning about toxicity in our food, air, environment and how it is affecting our body. I loved the ingredients in the products and was BLOWN AWAY when I listed to a Product Analysis Podcast by Peter Greenlaw. He discussed key ingredients in the products, why they are in there, what they do for the body and why our body needs it. After my 11 days I lost 8 lbs and 13″ and I knew this was an answer to my prayers for NUMEROUS reasons.

I continued cleansing regularly, taking a shake every day and telling everyone I could about Nutritional Cleansing because it was making such a big difference in my life. I felt fulfillment educating others and myself about what I was learning everyday as I studied nutrition, toxicity, Isagenix and our bodies. I was able to help people reach their health goals and be more confident with themselves. I was happy but I still couldn’t figure out why I continued to have my week of exhaustion every month. I soon realized it occurred when my hormones were at their highest every month. Little did I know that Nutritional Cleansing was going to be more of a blessing than I realized.

Close to 1 year after I started Isagenix, in September of 2012 things took a turn for the worst. My exhaustion turned to CHRONIC FATIGUE, migraines and pain (which I had never had before) from my shoulders through my neck to the top of my head. I couldn’t sleep because my neck was so sensitive that it kept me awake, tossing and turning. My back and hip began to hurt, I was extremely nauseous and had GI issues and even more frustrating my vision was getting blurry and I kept forgetting things which wasn’t like me at all. I was internally torn knowing that I should be feeling so good because I was taking such good care of my body, making huge changes to my diet as well as my family’s yet I was worse than I had ever felt in my life. Frustrated, being challenged mentally, physically and emotionally I didn’t know what was going on but I knew I had to figure it out, this was NOT okay!

I started with my OBGYN since I knew symptoms were related to my hormones. I got blood work, ultrasounds, more blood work and all of them came back perfect. My OB sent me to a Family Dr and I knew the moment he sat down and started talking that he wasn’t going to help me. He looked at my chart, asked me a few questions and told me he thought it would be a good idea to get on depression medication. He even told me a story about a woman who thought she didn’t need them and ended up back in his office a few months later, tried them and felt so much better. I told him, “I have worked hard to balance my pH, cleanse my body and this is not what I am going to do when you don’t even know what is wrong with me. Thank you.” I left and called my OB for another suggestion. Over the course of 3 months I went to my OB 3 times for more tests all which came back normal; his last suggestion before I gave up on him was that maybe I had Seasonal Depression Disorder…I am not going to lie, I may have, WI has LONG, dreary winters and I love and need the sun but nice try Dr. that wasn’t it and I knew it. It was at that moment that I felt He along with the other doctors I had seen didn’t believe me. He sent me to another family physician who I actually liked and she took the time to listen to me, do more blood work on different panels and realized that my ANA panel was positive. That means that my autoimmune disease test was positive. She called me and told me not to freak out but look up Lupus because that is what I may have according to my symptoms and I need to make an appointment with a Rheumatologist. I was a little freaked out but at least had some relief that we knew what it was so we could work on fixing it. I called the Rheumatologist… and the chase continued. I sat on the table, he looked at my joints, my neck, my head and checked my chart over and over. It was very obvious by his body language and observing him that he was puzzled and didn’t know what was wrong with me. He finally told me that I don’t have Lupus nor MS nor Rheumatoid Arthritis so he didn’t know what was wrong but that he felt I should get a cat scan and go see a GI Dr. I refused the scan and made an appointment with the GI Dr. for the following week.

By this time I was so frustrated, tired, mad and starting to feel a little depression from the lack of help I had received. NOBODY understood what I was going through: I felt like a 90 year old woman on her death bed and I didn’t know how long I wanted to hang on. I don’t remember ever feeling that way before in my life and I didn’t like it. I had no control and couldn’t do anything about it. I was sick and nobody believed me. I wondered if my husband, my friends, my family believed me because the doctors weren’t and they couldn’t find anything wrong. I would get up and try to go to the gym to get myself going but it only made it worse. It took everything I had to get up, take care of the kids and try to live a “normal” life. I put on my happy face because I didn’t want people to know how bad I was suffering on the inside because on the outside I looked fine. On my couch, on my floor, on my bed I would cry and pray that someone/something would help me.

My prayers unknown to me were being answered. I had a friend suggest that I see her natural path Sue as I was going through this but I pushed it aside, continued seeing doctors who I thought were going to do a test, find out what was wrong and get me on my healthy way. I was skeptical of Sue and her ability to help me, it sounded a little hocus pocus when my friend would say, “she works on you through energy, she can read your energy and tell you everything that is going on inside of your body!” Really? Well after 3 months of getting nowhere with doctors, feeling alone and that nobody believed the pain I was going through and that I REALLY WAS sick I decided to make an appointment with Sue. I had nothing to lose. In the meantime I did make an appointment with a GI Dr which was just as pointless as the rest. The only “good” thing that came of that is a couple days after my appt. with him I had blood in my stool so he got me in for a colonoscopy…awesome. I had had one before when I was first married for some bad stomach issues but the results were fine, so I knew what I was in for. Let me just say that NO a colonoscopy prep and Nutritional Cleansing have NOTHING in common. The Dr. did find a pre-cancerous polyp, which he removed and advised I get a colonoscopy every 3 years. Ugh.

The November day arrived for me to meet with Sue and I was nervous but more sick than anything. I needed help and I didn’t know that I was going to get it immediately from her. I found a babysitter for my little girls and was with Sue for 4.5 hours!! Her Quantum biofeedback was the COOLEST thing I have EVER done. Our bodies are made of energy and this machine reads that energy and can look through every panel of your body and tell you what is going on. She told me things about my body (like I am lactose intolerant) that I didn’t tell her. She is not an MD and does not diagnose but she did tell me that it was showing I had Lyme bacteria all over my body and as we went through the panels it was the cause for all of my issues. Late stage Lyme and I was affected neurologically. My body was a mess but at the same time she said my environmental toxin levels were lower than she had ever seen and she could tell that I was giving my body good nutrition…THANK YOU ISAGENIX! I knew it was awesome but what I didn’t know was how I got Lyme? I never saw a tick, nor a bull’s eye rash.

Long story short, my vagus nerve was severely damaged by the Lyme which was causing my neck and head to hurt and since it is the source of all automatic responses it is also the source of my blurry vision, plugged ears, memory loss and digestive issues but before I even left her office I felt better and I knew this was the answer to my MANY prayers. My next concern was how I was going to pay for all the treatments since insurance didn’t.

My symptoms returned a week later and I went back to see Sue. My husband wasn’t sold on the idea of me having to pay so much for an undetermined amount of time and questioned if I was sure this was the right thing to do. I knew people thought I was crazy and they were concerned for my health and wellness but what they didn’t know is what I was feeling inside and how I KNEW without a doubt that is what I needed to do. Once again Sue helped me feel better, educated me, gave me some supplements and discussed a plan… antibiotics came up. I was hesitant to take antibiotics and Sue wasn’t sold either, but knew I wanted to do everything I could to get rid of this hell inside me.

I began researching Lyme Disease, hours on end. I wanted to know everything about it, how to treat it, what it does and I wanted to talk to others who have gone through it so I could be prepared to fight this. I was able to get in contact with numerous people all over the US who have Late Stage Lyme and the symptoms and experiences with doctors all seemed the same. I learned that the natural healing route was the most successful; nutrition, rest and cleansing were a must. I had a new appreciation for Isagenix and knew it has been placed in my life for a reason. Every doctor, nurse, person who had experience with illness and natural healing all focused on cleansing. I would continue cleansing but I needed antibiotics.

Sue wasn’t able to give me a prescription for antibiotics because she was not an MD so I had to find someone who could. I went back to my GI Dr and without telling him I knew I had Lyme I asked him to test for it. He reluctantly agreed to test for that as well as Celiac Disease but was certain the Lyme could not be the cause of my problems. My test showed up negative so the Dr. would not write me an Rx for antibiotics so I went to my next option. I was referred to Dr. Whitcomb in Brookfield who was a practicing physician turned homeopath who specializes in Lyme Disease from a woman whose son had Lyme. It made me sick to think of spending $300 for 1 hour with him but I knew it had to be done. I was able to be diagnosed by him from my symptoms and was told to go gluten, dairy and sugar free. He gave me a plan, talked about the need to cleanse (I had taken in all my Isagenix products to show him and he was very impressed and told me to keep doing it) and said he wanted to see me in 1 month.

I felt a flood of emotions regularly: frustration that this disease is so controversial yet so detrimental to the body. MAD that insurance won’t pay for natural medicine when that’s what works best for some (most) people. Guilty for spending so much money on me. Sad for the people who had been suffering for years with no relief. Worry that I would have to deal with this for the rest of my life but happy I found what was wrong so I could work on getting better.

For the next year I would have good days and bad days but I learned many life lessons along the way. I took a month off the gym and rested my body, eventually I was able to get back 1-3 times a week. It was during this time that my obsession of the gym was thrown out the window. I realized I would be okay if I didn’t make it daily. I couldn’t go daily, and I knew it wasn’t because I was lazy but because my body was telling me it needed rest, from working hard to fight. My feeling toward my body changed, I was more appreciative and felt blessed for the good days I had and took advantage of those days. I had my bad days, bad weeks and I would struggle to find peace that I was ever going to get over this. Would I ever be able to work out as intense as I’d like again? Would I have energy to play with my kids, go hiking, biking, play volleyball, work in the yard even half of what I did before? I felt a lot of discouragement at times but I knew with the support of my family (thank goodness they believed me and did everything they could to help) and my knowledge that my God would help me, I could get through this.

It is now May 1, 2014 which is 1.5 years after I found out I had Lyme and I am doing well…not 100%, I still have my days of fatigue but instead of 5-6 days a month it is down to 3-4. Well enough that I wake up in the morning ready to go to the gym instead of having to get up wanting to sleep longer. I am able to go to the gym or exercise 5 days a week, play volleyball, play with kids, coach volleyball, and be a wife and mom without feeling like I need to go to bed by 7 pm. I have energy, I have motivation and ambition, I feel like there is hope and that I can overcome this battle as I continue to eat clean, cleanse, and exercise but rest when I need to. I have the energy, motivation and passion to help others achieve their health goals and I feel extremely blessed to have the knowledge, experience and tools to do so. Life is good. Life is hard and challenging but my challenge has made me a better person. I am strong. I am a fighter. I am blessed tremendously to have Isagenix and my natural path as tools to help my body and mind heal.

What inspires you?

I am inspired by the knowledge that I have in Jesus Christ. Faith. He sacrificed His life for me, He felt every pain and emotion that I have gone through and more- knowing that gives me hope that I can have all of my suffering taken away if I have FAITH and take every step that I have been led to take to heal. I have faith and tell myself daily that I am healed. I feel good, my pains are gone. I pray numerous times daily to help me stay positive and to increase my faith in Christ that this burden will be removed. That is what inspires me and has given me hope that is available for anyone and everyone no matter what suffering they are going through.

Health is a battle worth fighting for and I am winning the fight.” – Anonymous

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Story 8

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How has Lyme Disease affected your life?

My name is Jordan and I’m 21 years old. I was catapulted into the gruesome world of chronic Lyme disease in March of 2013. At the time I was training for a marathon to raise money for cancer research and doing well at Cal Poly San Luis Obispo studying to be an entomologist/taxonomist. I was salsa, swing, and blues dancing every week. I was surrounded by new fun-loving friends, a great boyfriend. I was in peak health and exuding youth and happiness. It was a great time to be me. Then the horror began as my body slowly began to fall apart.

One week in March/April, I noticed I was feeling funky. I was a little dizzy, tired, and not very hungry. I paid no attention. It was probably a cold. The days, weeks, months ticked by and my body was failing more and more every day. My appetite was gone. I was so dizzy that I became accustomed to always feeling like I was going to fall over. I was haunted by a persistent feeling of someone strangling me, and my throat was always spasming. I rarely vomited but would spend literally hours a day with my face in the toilet right at the verge of vomiting, hoping, BEGGING for my body to please just let me throw up so the crippling nausea could stop for a few minutes. I wasn’t sleeping well, or at all.

Despite all this I ran a half-marathon, pushed through my classes, (even was on the Dean’s list) and stayed in San Luis Obispo over summer to work two jobs. I spent countless hours at the Health Center on campus. I practically lived there when I wasn’t in class or working. They made me take probably about 15 pregnancy tests. Blood tests kept coming back abnormal but no doctor could tell me why. They tentatively diagnosed me with various diseases for short periods of time before moving to another.

I was anorexic one day, I had GERD the next, then mono, then depression. I knew they had stopped taking me seriously when a physician’s assistant told me, “Sweetie, I’m going to take you to see the women’s mental health counselor and she’ll help you work through your problems.” Eventually I was referred to a gastro-intestinal specialist. I had an endoscopy done which showed that my stomach was inflamed. I was diagnosed with gastroparesis. My upped digestive tract was partially paralyzed, my vagus nerve was damaged.

When I asked why the doctors never had an answer. They called it “idiopathic,” which was medical speak for “we don’t know why you have this.” Meanwhile, I was dropping pounds and losing the ability to go to class. I was prescribed a myriad of medications that were supposed to increase motility. Looking back, many of them were very dangerous. I took everything from hardcore antidepressants intended only as a last resort medication for suicidal patients, to a drug that had a not-as-rare-as-you’d-hope side effect of incurable tardive dyskinesia, to an FDA black-listed drug that I had to get shipped from outside the country that had caused people in the past to drop dead from cardiac arrest. None worked except the FDA-blacklisted drug which made life somewhat bearable. So here I stayed in this somewhat bearable zone of borderline misery for a long time dragging myself to class, thinking that I was crazy, and wondering why my life and my body were falling apart.

Then the infection entered full-blown stage 3- total systemic infection. I could go to class no longer. I sat in my dorm room desperately trying to study for missed midterms while suffering seizures. My legs hurt too much to walk very far. I kept 911 dialed on my phone ready to call because it would get so hard to breathe that I was often sure I was going to die. I dropped most of my classes that quarter. My heartbeat was erratic and skipping constantly. My ears were ringing so loud it was hard to hear. The saddest part was rushing to the hospital only to have the ER staff give me odd looks, hand me an informational flyer with “How to calm yourself during a panic attack” written on the top, and send me home.

I left school, I just couldn’t do it any more. I continued to decline at home. My parents desperately tried to get me to eat. I could no longer go outside because the sunlight burned my eyes like a vampire. I wouldn’t sleep for 2-3 days at a time. I’d stand in the shower for 10 minutes trying to remember how to wash my hair. My gums bled, my nails cracked, I heard voices that weren’t there. My skin erupted with open sores and scars. We were in the middle of scheduling a procedure where I would get a Botox injection in my stomach to try to force my pyloric sphincter open so food could get through. We were considering getting a pacemaker placed on my stomach to shock it into working. I google searched the phrase “total gastrectomy” quite a few times and I was actually considering it. At this point I had secretly accepted the fact that my life was over and that I was going to die.

My memory is a little fuzzy, but I remember one day talking to my uncle over the phone and him telling me about his symptoms. He has Lyme disease that he contracted years ago and still suffers from chronic Lyme and persistent co-infections. I vaguely remember saying to him “Yeah me too… yeah, I get that too, yeah me too. Yup, yup, yes, YUP, YES ME TOO!!!” Symptom after symptom after symptom we shared. I googled Lyme disease and found stories from other people with the exact same symptoms as me. My uncle told my family and I to go to our primary care doctor and get a quick prescription for oral doxycycline, take it for a few days to piss off the bacteria so they are out and about in my blood then get a Western Blot. The ELISA, he explained, was completely unreliable.

Fast forward to my father and I sitting in a room with the Dr, his two young female interns in the back with a computer actually pointing at me, whispering and giggling while ignoring my father’s story about my symptoms and why we need these antibiotics. The Dr proceeds to take my stack of medical files showing that I have real serious health issues and places it on his desk without a single glance, leans over in his chair, and says, “Now, what I’m about to say may anger you, but I’m just going to throw it out there…”Anorexia.” My father and I were stunned. Soooo…. that’s a no to the antibiotics then huh? “We can get you a team of anorexia mental health professionals who will help work with you through your illness. If you just gain 20 pounds I suspect that all of your problems will go away.”

What. an. incompetent. doctor.

I had to get this test to prove to all the Dr’s out there that I wasn’t an anorexic attention-seeking loon. And lo and behold here I am today in the middle of my long-term treatment for late-stage Lyme disease, Babesiosis, Mycoplasma pneumonia, and Bartonellosis. I’ve clinically tested positive for all except Babesia, but unfortunately the tests for Babesia especially are very unreliable and I have all the classic Babesia symptoms.

Treatment has been absolutely the most difficult thing I have ever had to go through in my entire life. With these diseases you get much-much worse before you get better. I have spent countless nights curled in a ball on the floor screaming and BEGGING for the pain to stop. The brain swelling from the Bartonella die-off makes me see things, hear things, convulse with seizures. There have been days where both legs have been completely paralyzed for hours and I get around by dragging myself on the floor. Sometimes I will lose hearing for 5 minutes, lose vision for 15 minutes, or lose the ability to talk properly for a half-hour.

In my deluded states I have contemplated suicide and thought about bashing my head into a wall to stop the unbearable pain. Many a night I have fully accepted death as I was absolutely 100% no doubt in my mind certain that I was about to die. But I’m not going to die. In fact, I’m improving. Only 5 months of hardcore oral and IV antibiotic and anti-malarial treatment has brought this girl to her knees, but I’m seeing the faint light at the end of the tunnel. I’m seeing improvements. Less trouble breathing, less fatigue, less dizziness, better memory, fewer heart palpitations. Slowly but surely I am gaining a hold of my health again. When not on IV antibiotics (and actively herxing) I am about 50-75% better than I was before treatment started. I am a living-breathing best case scenario.

I will never forget this suffering and it is far from over but by golly is it worth it. Because just knowing that in another year, maybe two, I can go back to school, run another marathon, spin around on the dance floor again, and live my life again. That alone is worth any amount of pain. I will be left with a lot of permanent damage from these infections. I will never be cured. It is called chronic Lyme for a reason. But someday I’ll be healthy again. And I will be a different person. I will be a better person. Life and health are precious things I know that now. I know who my true allies are. And I know that no one is invincible.

I am not going to be a silent statistic. I am going to fight during and after my treatment for Lyme patient rights and chronic Lyme disease awareness. 25% of the ticks on my college campus carry the Lyme spirochete and there are students getting infected at my school right now. But I’m going to do whatever I can to help them. I am so lucky. The pain and suffering I’ve experienced is nothing compared to other Lyme warriors out there. I can still walk, talk, remember a lot of things, and function. Many with Lyme cannot or are bedridden. I owe it to those who cannot fight to fight for them.

Look out Lyme, you just infected the wrong gal!

What inspires you?

Science, salsa music, insects, fuzzy socks, and Neil deGrasse Tyson. 🙂

“In the depth of winter, I finally learned that within me there lay an invincible summer.” – Albert Camus

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Story 7

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Lyme and the co-infection Babesia, have completely changed my life.  Before Lyme, I was one of those people in perpetual motion. I loved my job, my hobbies – my life!  Work was nourishment to me – whether in the office or at home gardening, renovating our 270 year old home (purchased 2 years before I got sick), or helping family.  Now I am severely limited physically – can’t stand or walk for more than 5 minutes, and can’t sit upright for more than 30 minutes without excruciating pain.  The pain never relents, and affects nearly every muscle and joint in my body. I have lost all strength and stamina to do even simple tasks.  I can no longer think.  I can no longer read a book.  I can barely make it through a news article without the feeling my head will explode.  I used to write business plans!  I could research an entire industry in two weeks for background, and now I can’t remember a conversation I had a few hours ago!

It took 3.5 years to get diagnosed with Lyme, and another 5 years of unsuccessful treatments.  I have seen 35 doctors in total in these 8 years, many outside of insurance.  We estimate that, so far, this disease has cost us over half a million dollars in lost wages and out of pocket expense.  Our dreams have been robbed.  No travel, no afternoons on the beach with the backgammon board (we live on Cape Ann, MA), no DIY projects on our lovely home that still needs some TLC to preserve it, no kayaking, no hikes in the woods, no COOKING (I was a gourmet cook when I could stand long enough to play in the kitchen), no gardening…. and worst of all, I can’t even sleep in my own bed with my husband!  Perhaps the easier question would be, what part of my life has NOT been affected by Lyme?

But I continue to be positive.  As a trained problem solver, I view this as a problem for which I simply have not yet found the answer!  On days when I can think and read, I do research on what is working for others living this nightmare.  I have learned to appreciate all of the gifts I still have, rather than focus on what I have lost.  Love and laughter are the only true balms that help, and I have both every day.  Not a person alive is luckier than I am, with tremendous love and support, and that is what keeps me going.  My wish is that everyone in the midst of this hell, had those blessings, too!

What inspires you?

I find the greatest inspiration from the tremendous human spirit I have come to know in Lyme support groups on social media.  Compassion, kindness, and true caring are abundant.  That fighting spirit that keeps people searching for answers, as they grasp hope with both hands and try to understand why there is so little help for so many seriously ill and suffering people. Perhaps it is those who suffer most and truly understand life-altering illness, who gain wisdom and insights that healthy people take longer to acquire, or simply miss altogether.   It would be impossible to witness such hope, optimism, and fierce determination and not be inspired!  And for their warrior spirit, kindness and true compassion, these people deserve to be helped!  We matter, despite being more broken than most people can imagine.  We all want to get better, find answers, and fix what is broken in our medical system so we can contribute our gifts to society, rather than burden society with our inability to be productive.  I am also inspired to keep going in the name of those “Lymies” who simply gave the fight everything they had and lost – either taken by complications (yes, Lyme can be fatal), or by taking their own lives (suicide is not uncommon with this disease!).  Life is a precious gift, and too many with tick-borne diseases are taken far too early.  We have lost friends in all age groups – from children to seniors, as a direct result of this hideous disease and they MUST be remembered!

“There is always an answer if you seek it with an open heart and mind. Listen for it…” – Anonymous

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Story 6

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

I was diagnosed with MS 15 years ago. Two years ago I was told there was nothing else I could take to stop the progression of the disease. Through Facebook I learned about chronic Lyme disease and how MS can possibly be a misdiagnosis of it. I sent my blood away to a lab in the states since the Canadian Elisa test is faulty and inaccurate. My results came back with a positive for chronic lyme also active lyme and at least two co-infections. I began treatment with a lyme literate ND in my city since no doctors are allowed to treat chronic lyme because “it doesn’t exist” . A few months later I also started to be treated by a Lyme literate MD in the states. Its been about 1 1/2 yrs of treatment now. My mobility is still a big issue but my fatigue, energy, cognitive issues have all improved. I had suffered for 15 yrs with the wrong treatment it will take a few years with the correct one. All appointments both ND and MD are paid out of pocket, all supplements, homeopathy, and prescriptions are all out of pocket. We also cover travel cost, food, and hotel when I must go see my American MD. My heart just aches when I think of the total we have spent on this. I have no other options. This is my last hope to walk again.

What inspires you?

My husband and my two wonderful sons. I use to be  very active volunteering with my community. I look forward to doing so again. I want to be an involved grandparent someday. I go to bed every night saying thank you for the past day and I wake the next morning thankful for being able to greet the day..

“Never give in and never give up!” – Hubert H. Humphrey

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Story 5

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How has Lyme Disease affected your life?

Lyme disease hijacked my health and thinking power. It gave me brain pressure and rage which I used on my teenage children for not picking up their socks, or for wanting to sleep in. I abandoned my 5-acre garden/orchard/pond and retreated indoors to sit in front of Farmville. I gave up my volunteer work because there was no energy left. I lost my career as a technical writer because there were too many memory and cognition problems slowing me down.

My kids lost their college scholarships because they were sick too — and couldn’t keep up. We had to sell our dream home and move in to a fixer-upper.

My husband battled Lyme disease, too, and had ER trips with breathing difficulties. Those were scary times.

We had to fight for a diagnosis, and finagle for treatment, and keep trying until everyone turned the corner and started getting better. Everyone had a different path to wellness. But we hung in there, and pulled together.

What inspires you?

I’m inspired by people who have endured great loss — whether by war, illness, disaster, or otherwise — and they are still able to find joy.

Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future”

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Story 4

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

This following story took me a while to post it online, I was insecure about it, and I really needed to get out of my comfort zone for it. In fact I’m already 3 weeks busy with it to write it down. (Also my rheumatic pain in my hands aren’t helping to make it easier to type.) But this “story” is my story, and it’s not to be pathetic, or get people to feel sad for me, but I just want to raise more awareness about this disease and what it does. This is why I share my story, if I had my diagnosis 10 years earlier my life would be totally different, but hopefully if people read this and think they might have Lyme disease, get yourself tested and get the right treatment, because if you respond quick to it with the right treatment you’ll be able to fight it!

A lot of people have an invisible illness, and with that comes a lot of ignorance, and judging. On my instagram and my website : www.bijzondersmakelijk.com I try to raise as much awareness as possible, including pictures, which I think is scary as hell, because people can see you on your weakest moments, but the fact is, people can read stuff, but pictures makes an more effecting response.

It’s hard to hear from people: “Oh but you look good!” Uh yeah thanks, but from the inside I feel like crap! I’d rather have looked miserable on the outside and felt great on the inside. With some make-up you can hide a lot of things, and I always felt more secure, it was like I could put on a mask. Sometimes I ask myself, what does a sick person look like? Because people judge way too fast, and they think that you always need to see it when somebody is sick. And they think that you need to be in your bed the whole day, but it’s not the flu or something, it’s a chronic disease, and we have our ups and downs. And when we have our ups, we want to make the best of it, and try to do something! And those people judge you by that, but what they don’t see is that the day after you’re bedridden for a day or a week. Just because you wanted to be “normal” for one day or even an hour. Somedays I can’t even shower myself or walk to the toilet, and the other day I can do it. It’s just a day by day thing, and you get thankful for every moment that you can spend with people you love and all the little things! But so many people have invisible illnesses. (Ofcourse my family sees that I lost more than 60 pounds, lost a lot of hair, I even needed to cut my long hair off because of all the hair loss.) But a lot of people don’t know about Lyme disease, or what it can do to you. If people hear that I got 2 cysts in my head, or have pancreatitis, or got things with my veins then they’re like, “Oh that’s so bad!” Well, Lyme is bad! Normally I don’t like to talk about these kind of things, but I think it’s good to raise more awareness about Lyme and help other people who are also struggling with invisible diseases.

I’m already more than 10 years sick, the symptoms began with just some viruses, having every month the flu, then some back-pain, problems with my stomach and slowly there became more and more severe things with it, but I could still live my life. When I was 18 I moved away from home to start living together with my boyfriend, (I’m from the east, and he is from the south) So for me it was a big deal, I left my family, friends, and was trying to start a new chapter of my life, with a new school and job. But at that moment, just 4 weeks later my health escalated. We went from doctor to doctor, but nobody could tell me what was wrong with me. I could barely walk anymore, so they sent me to a revalidation center, but 5 months later it only went worse. So the doctors from the revalidation center told me, there is something, but we don’t know what.. So we continued our journey to find what was wrong! And finally we found a doctor who listened to me, and said.. Well, I think you got Lyme disease, so let’s test your blood, and in a few weeks we know more. And after a few weeks, I finally got my answer, I got lyme disease with 5 co-infections. First I was happy, I finally knew what was wrong with me, and I thought after some antibiotics that I would be fine. But after one and a half years of trying different antibiotics I got more sick, and the Lyme got stronger and stronger, and has taken over my body and organs. Now I live with constant joint/muscle pain, headaches/migraines, nausea, dizziness and much more.. Only because my diagnosis came way too late, I got Chronic Lyme Disease, and it will stay with me forever. Lyme also got the nasty habit of hiding, sometimes you can be fine, and then it can be triggered through something and you’re life can be turned upside down again. After the antibiotics I tried a lot of different treatments both alternative and the normal health care, but nothing could fix me. After all that trying I got very weak, and I need a wheelchair now, first I was ashamed of it, but for now I know because of that wheelchair I can be at some places that I couldn’t be without the wheelchair. Sometimes for pictures I get out of my wheelchair, because you don’t want that wheelchair in all your pictures when you look back. People are always judging, with Lyme you have good and bad days, most days I’m in my wheelchair but if I have one bit of energy I try to walk.. Unfortunately I have currently more bad days than good days, but the good days will come, I’m sure of that!

Currently I’m just 6,5 weeks back home in The Netherlands, after an intensive 6 months treatment in the USA, far from my family, months away from my family, my home, my dog, everything, just to get daily IV treatment in the USA, and fighting to get a little bit of quality of life back. I couldn’t be more thankful for the people and nurses who I met over here, first they were strangers but they became family, and they helped us get through it! I couldn’t be more grateful for how they handled everything, I came in with life threatening blood clotting factors, so high that I was a walking time bomb.. After 3 weeks I still was rushed in to the hospital because I had a tremor, the whole left side of my body was numb, and I spent 2 nights in the hospital, but I can’t remember anything from it, my short term memory has had a real kick in the butt from it..

In the USA the doctors where I went to, they are taking everything serious and tried to get to the bottom of it, and make it a little bit more comfortable for me. I got so much more answers thanks to the Doc who kept searching and doing more tests, and I couldn’t be more thankful for that!

I needed to go back home because I was too weak, underweight, my stomach couldn’t handle the iv’s, so I only detoxed for 6 months. I went back home to get stronger, and then I want to go back to the USA to fight my ass of, and kick Lyme some serious ass!

What inspires you?

Everything, even the sunlight. I get inspired from other people, from their stories, and trying to help them as much as I can with what I know, because I went from doctor to doctor, and tried so many treatments from the natural path to the regular hospital way..  I’m trying my part to raise as much awareness for this disease, because it surely is a killing disease, that can take everything away from you when you are too late diagnosed.

“You never know how strong you are, until being strong is the only choice you have.” – Bob Marley

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Story 3

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How has Lyme Disease affected your life?

Lyme Disease has affected my life because my best friend of 15+ years has this horrible disease. We started her story in a blog and hopefully soon we can add to it.

I don’t know what anyone is going through dealing with Lyme Disease, Chronic Lyme Disease and the Co-Infections. I had never heard of it until my best friend, Bella was diagnosed with Lyme Disease in 2002 after being bit in 1996. She was misdiagnosed by other doctors for so many years and when finally diagnosed, it was too late as it was already in the late stage. She has been through 5 miscarriages. Sent to an Infectious Disease doctor, after having a positive Elisa (Enzyme-linked Immunosorbent Assay) Test the doctor wouldn’t hear of it that she has Lyme. She was told she had a fever with a swollen spleen, and then sent to an Internist, then a Rheumatologist, then Aquatic Physical Therapy. All non LLMD’s saying she had Fibromyalgia and Chronic Fatigue. The Physical Therapist told Bella she didn’t have either one, then read to her from a medical book, looked at her and said “…I really think you have Lyme Disease…” She asked the Physical Therapist to tell her doctors, which they did and she was taken off PT and put on muscle relaxers and anxiety meds. She left home in 2008 in search of treatment in CT, NY & now in NC (her first 4 treatments and remissions were in Florida). She was so appreciative of her remissions to be able to dance, play, work and feel like herself again. Unfortunately, she fell ill with MRSA & relapsed again. She hasn’t been able to do much of anything since. She was interviewed for “Into the Light” in hopes of walking again and much faith in medical system & treatments. “Into the Light” Gala for Lyme back in 2009 with new famous LLMD that was very involved in Andy Abrahams Wilson’s documentary “Under our Skin”. During treatment the Edema was so extreme; she was so swollen and weighed 170 pounds. She currently has Chronic Lyme Disease and many of the Co-Infections that go along with it. She is too sick and her body too frail for treatment at this point. But her current LLMD is working on that – improving her muscle atrophy with Aquatic Physical Therapy exercises in her bathtub, as well as Magnesium baths for cleansing & detoxing. She drinks most of her food made in a blender with organic veggies, fruits, with green powder with lots of minerals and adds protein powder, which is her breakfast. Her LLMD has made diet changes as well. She takes a lot of pills both holistic & pharmaceutical. She will take a lot more pills when treatment starts. She will be starting 2 new pharmaceuticals in hopes of making her body stronger and eat more. Then more blood tests and treatment for Borrelia, Bartonella (both types), Babesiosis, and Rocky Mountain Fever. She also has Stage 4 Endometriosis & Mono. She has a positive Elisa Test with bulls eye rash. Positive Western Blot with 9 bands, positive Necrotic Lyme node (said to be cancer initially in surgery), but proved to be Bartonella. Yet still no one treated her for Bartonella, or anything else. She has had a positive Spinal Tap & MRI showing white matter in brain suggesting progressive MS, however the Spinal Tap proved otherwise. No MS flags in Spinal Fluid, rather evidence of Lyme & Co-infections. She is currently in a wheelchair and has been for 6 years, since MRSA destroyed her body with lots of help from Lyme & Co’s. Now in 2014, weighing less than 90 pounds, still in a motorized wheelchair, bedridden, life has become harder each day. Her vision is going, which scares her. And, EXTREME PAIN is her main companion. Always with nausea, too much suffering! Her organs are under attack. She soaks in her magnesium filled tub, drinking water, listening to music to try and make herself feel better. Remembering the days of who she once was and wishing for the day to be that person again! I wish every day I could be by her side and for “My Bella” to get better and be who she once was when I first met her, so full of life, love, and happiness! This disease is a growing epidemic with cases emerging regularly. I will continue to support this disease in whatever way I can and spread the word.
Bella’s story … to be continued … Click here to view.

What inspires you?

Bella inspires me to do everything I can to raise awareness for Lyme Disease.

“We don’t meet people by accident. They are meant to cross our path for a reason.” – unknown

There was a reason why Bella walked into my office and applied for a job.  We have been best friends ever since.  I couldn’t imagine my life without her.
#FightBackBella #BF

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