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Life in Lyme Light Posts

Story 5


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

© 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 : 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


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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Story 2


How has Lyme Disease affected your life?

Let me count the ways..
Our CDC refuses to recognize Chronic Lyme, as a real, life threatening disease. They say everyone can be cured with antibiotics in 30 days. That would be comical if it weren’t for the fact that it has rendered me disabled, and has taken me from merely existing. Chronic Lyme is not only very real, it is devastating. Insurance will only cover short term treatment, and most cannot afford to pay for the incredibly expensive, out of pocket treatments that are necessary to survive and thrive. Chronic Lyme and it’s common coinfections (Bartonella, Babesia, Ehrlichiosis, RMSF, Mycoplasma) are truly a silent epidemic, nationally and globally. I have spoken to patients across the U.S., Norway, even Australia…and we all share two things in common. We all struggle to find and pay for costly, necessary treatment with doctors who practice privately, out of the eye of insurance and the CDC for fear of losing their medical licenses to save our lives…and we ALL have a fierce determination to LIVE, to truly live, not just exist. This disease can damage every organ, even the brain and heart, and invades our nervous systems, causing a neurological nightmare.

I am a 37 year old mother of two daughters (11&14), and a wife. I have displayed very minor symptoms throughout my life, but the perfect storm of unfortunate events caused my immune system to finally give up in 2012. I rapidly lost over 40 lbs., leaving me looking skeletal at 92 lbs.. I was losing the ability to swallow, had extreme anxiety/panic, insomnia and unbelievable fatigue, muscle and joint pain, daily tremors, extreme sensitivity to light and sound, and much more, but most prominent..feeling ‘fluish’ every day. I saw countless ER doctors, specialists, even a psychiatrist because I thought I was losing my mind (and doctors added to that belief, sadly). It wasn’t until I wracked up several chronic illness diagnoses, and found out that I had a hereditary condition (EDS), that I thought I was on the right track. I had spinal cord surgery, then a brain procedure..hoping these extreme measures were the answer, only to eventually recover and still feel sick and lost. I asked every doctor if I could have Lyme and they were all adamant that I did not. Low and behold, I finally went to a neuropsychiatrist, who had suffered from Chronic Lyme herself for decades, and within ten minutes of hearing my journey she stopped me and said ‘I am certain that you have Chronic Lyme Disease’. It hit me hard, but was also music to my ears. There were several things that led me to think this all along, but I couldn’t find a doctor to agree. I was finally tested with IGeneX, the most reliable test available, and sure enough, this doctor said I had the most severe case she has seen in over 14 years of working with Lyme patients. I then went to an LLMD, who wasn’t sure if he wanted to take my case, because he thought I was near death’s door. Luckily he did, and even stuck with me after I landed in the hospital for ten days after my very first injection of antibiotics. He had never had a patient as sick as I was. This scared me…but I was determined.

I am now in my 5th month of treatment, after having a picc line placed, and receiving IV antibiotics, supplements for GI issues that help boost the immune system, vitamin C, a great probiotic, and my secret weapon…IV Ozone. This regimen has brought me more progress in 5 months than I had seen in 3 years. I am slowly but surely improving, and I want everyone to know that they can too. I researched endlessly, for over 6 months, convinced my doctor to take chances with me, and most importantly…held onto hope that I would one day be the mother and wife that I once was. I’m not 100% yet…but I am fighting my way there. To my fellow Lymies/Spoonies….keep fighting and hold onto HOPE. It truly can get better!

What inspires you?

There are several things that inspire me, but if I had to choose just 3, I would say the love of my children and husband, and their unwavering support have gotten me through some of the darkest of days. I also think that certain chronically ill women that I have met through social media, have become like family as we’ve shared this rocky road together, especially my beautiful inspiration Anita, from Norway. She has fought Lyme even when it took her ability to walk, put her into a coma, has her living in a nursing home in her early twenties, completely dependent on others, and has now taken her ability to eat. She continues to fight with the most beautiful smile I have ever seen in my life. She amazes me, constantly. Finally, helping others. When you lose your ability to do almost everything you once knew and loved, you have to find new purpose. Advocating and educating inspires me to continue this fight for my family, myself and the millions effected by this cruel disease.

“When ‘I’ is replaced with ‘We’, even ‘Illness’ becomes ‘Wellness’.” – Malcolm X

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Story 1

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Lyme Disease has affected my life because it affects the people around me. Although I, myself, do not have Lyme, I am still fearful of its impact. My childhood best friend has the disease, this is how I truly became aware of its weight and opened my eyes to its controversial and very real side. I may not fully grasp what it’s like to have Lyme, but I am receptive enough to see its impact. I soon realized other friends, mentors and deceased family members had it. It affects those that endure it physically for sure, but I can say confidentially it affects those around it as well because I can feel it. Lyme Disease has affected me because my empathy is not strong enough to heal those I love battling it. Lyme Disease has put a damper on my happiness and caused a lot of helpless pain, but has opened my eyes and heart to devote myself and my abilities for awareness and a cure.

What inspires you?

The impact I could create for others inspires me. People inspire me. The chance to change even one person’s life inspires me. Freedom of expression in all forms inspires me. Love inspires me. Laughter inspires me and baked goods generally spark some inspiration as well!

“Laughter. An essential ingredient for survival. And we laughed a lot.” -Patti Smith, Just Kids

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