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Help Heather Fight Lyme Disease

$22,301 of $100,000 goal

Raised by 230 people in 16 months
Created November 15, 2017
Help Heather Fight Late Stage Neurological Lyme 

Dear friends and loved ones of Heather,

As you may or may not be aware, my wife Heather is currently facing a serious medical crisis. She was misdiagnosed with an auto-immune disease 20 years ago, after waking up with no movement of her neck that lasted for four months. This was accompanied by severe fatigue, flu like symptoms, joint and muscle pain that was incapacitating.  

Earlier that same year she was also bitten by a deer tick and exhibited a bulls eye rash.  She tested negative for lyme.  At the time we did not know typical ELISA and Western Blot performed by your PCP are less than 50% accurate and false negatives are the norm. She was also tested immediately after being bitten, but Lyme antibodies will often not show up on blood work for 2-6 months.  This is when she began living with an invisible illness in chronic and debilitating pain, with no awareness that this was in fact Lyme Disease and not Fibromyalgia.  

I have watched Heather live in pain all these years with a host of medical problems, ER visits, surgeries, and hospital stays.  I am acutely aware of the fact she has had to work 10 times harder than a healthy person to accomplish her goals, but she has never given up. In spite of living with chronic illness Heather has always gone after her dreams and has lived life to the fullest.

She worked in film, traveled, and later earned her graduate degree.  She became a psychotherapist, using her gifts to help others, providing therapy to military personnel, and doing grief work with terminally ill patients and their families.  In addition to her work in hospice she opened her heart even further working in a hospital setting in pediatric oncology and also took on the role of managing programs and providing therapy services for adults and children for a non-profit cancer organzation.   While her work has been so meaningful to her, by far her greatest joy has been becoming a mother. With her health issues bringing our son into the world was not an easy journey.  Again, Heather never quit. She has always been an ambitious, loving, giving spirit, with a great sense of adventure, who appreciates all the beauty of life.  

This is what living with invisible illness looks like

Heather and Baylin before Lyme treatment

After our son was born in 2011 further health problems began to manifest and she was unable to return to work.  She began to rapidly decline over the summer of 2017 with severe symptoms that impeded her ability to physically function daily.  We knew something was terribly wrong.  

This past July, she received the answers to the medical issues that have plagued Heather her entire adult life. It was not until Heather had a full IGeneX DNA blood panel for Lyme and co-infections that she was finally properly diagnosed with a rare strain of Chronic Late Stage Neurological Lyme Disease (Borreliosis/Relapsing Fever). This strain of Lyme causes inflammation of the brain, severe neurological symptoms, seizures, involuntary body tremors, impaired muscle movement, flu like symptoms, joint, nerve, and bone pain.  Heather has also been diagnosed with three co-infections known as Babesia, Ehlichiosis, and Rickettsia.  These co-infections have infiltrated the body causing further damage.

Lyme has been called the great imitator mimicking fibromyalgia, chronic fatigue, MS, and ALS and other illnesses.  Because doctors are typically not educated on Late Stage Neurological Lyme, and often use ineffective testing, it is not uncommon for people to go misdiagnosed for 15-20 years. Since Heather spent 20 years treating symptoms of the illness but not treating the infection itself, her illness has progressed unchecked and is affecting many of her organs, tissues, and systems, including her brain and central nervous system.

In September, Heather began aggressive Lyme Disease treatment with her Lyme specialist and neurologist.   Unfortunately, she began having seizures, and now has daily difficulty with her speech, cognition, and suffers with painful involuntary full body tremors that can last all day.  This is due to antibiotic treatment, which causes herxheimer reactions as the bacteria dies off and often makes symptoms worse before they get better.  In addition she lives with head pressure, extreme weakness, fatigue and severe pain.  She recently suffered a Transient Ischemic Attack (mini stroke) and has been in the ER 3 times since the onset of treatment.  Heather's seizures are now accompanied by complete temporary speech loss.  She is primarily bed bound; and currently requires use of a wheelchair, which makes it difficult for her to function daily and care for our 6 year old son Baylin.

ER with seziures, loss of speech, elevated heart rate 

$1,088.00 Out of pocket on medications this month


The financial burden that comes with Lyme disease treatment is significant.  It is my hope we can create a network of financial support to aid us on Heather's fight to regain her health. With the lack of awareness and research that comes with Neurological Lyme Disease, almost all of the costs are out of pocket due at the time of service. The political division of the medical community around proper Lyme treatments is a major culprit in insurance companies refusal to pay medical costs such as diagnostic tests, bi-monthly labs, doctor visits, brain scans, certain medications, and supplemental treatments that can help the body detox and increase bacterial die off while easing symptoms. 

The total treatment protocol will last approximately 2 years and will most likely require installation of a picc line for IV antibiotic treatment once all three co-infections have been targeted.  Each co-infection will take 3 to 6 months individually of oral antibiotics to treat.  IV treatment may be 6-12 months and can be up to $25,000-35,000 a round. All donations will go to these medical expenses, medications, and supplemental treatments not covered by insurance, in addition to medical meal delivery service and caregiver for her and our son. 

Another day in the life of Lyme treatment

Brain Scan not covered by insurance, payment due at the time of service

Heather continues to fight against what seems like a insurmountable journey with grace and humor.  She remains a loving wife and mother in the darkest times and is still envisioning the life she will regain.  Her heart is broken for Baylin, who has lost the mother he once knew.  He has had to endure seeing Heather having seizures and witness medical personal caring for her.  She remains acutely aware of how precious life is and what a gift family and friends are.  We consider the love of friends, family, and strangers our personal arsenal to remain steadfast in our determination to beat this illness.  

Thank you for reading and for your support, friendship and love.  Please consider donating towards Heather’s medical treatment and giving her the chance to live life as it should be lived: thriving and healthy.  We would appreciate you sharing Heather’s story with others and encourage them to donate if they feel called, or to simply send prayers and healing thoughts for her long challenging journey of treatment.  

With gratitude,
Chris, Heather and Baylin

www.Ilads.org
www.lymedisease.org
www.underourskin.com
https://www.huffingtonpost.com/dana-parish/lyme-the-infectious-disea_b_9243460.html
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Written By Heather

It has been just about a year and a half of treatment.

We began an aggressive protocol for Babesia treatment in June of 2018 with a new drug protocol to treat malaria like parasite coupled with antibiotics. Babesia is the culprit that causes inflammation of the brain, burning in hands and feet, night sweats, cognitive overwhelm, seizures, difficulty with motor function, and cardiac symptoms of rapid resting heart beat and arrhythmia’s.

My October labs sadly showed a doubled number of active and chronic infection of Babesia, which makes sense as you start a protocol it draws out the parasites and bacteria. Since, October I have had more frequent cardiac symptoms, extremely low blood pressure for periods of time, nausea, headaches, and dizziness coupled with severe joint pain, swelling in my ankles and feet, and my usual crushing fatigue and seizures.

Though, I have been dealing with these debilitating and frightening symptoms I have also begun to experience significant improvements that clearly indicate we are on the right path. My dystonic movement is almost gone entirely (which I had everyday for more than a year), my speech has improved significantly, motor coordination is improving. My neuropathy has been manageable. My seizures have decreased from 6 times a week to a few times a month. That often oscillates back and fourth and can be very difficult to have improved seizures and then begin having them more frequently. It is pretty much heart breaking for all of us.

My January appointment with my LLMD indicated my B-12 and iron was finally in normal range, my anemia resolved, my white blood cells count is climbing again after being dangerously low. My Babesia numbers are starting to improve. My Remitting Relapsing Fever, Rickettsia, and Ehrichosis remain in remission. Unfortunately, my inflammation markers remain astronomically high as is the inflammation of the brain. We are hoping for more improvement in Babesia/Lyme active and chronic infection numbers come April. Treating Lyme is a game of time.

I will complete my 7th month of IVIG infusions with my home nurse in February and will continue these blood transfusions through August of 2019. It takes 1,000 blood donors for one bottle of treatment. Blood plasma is clarified and put through a process to create immunoglobulin. In my case, the immunoglobulin is infused to replenish a compromised immune system that needs antibodies to keep fighting bacteria and disease, treat severe neuropathy, and hopefully continue to improve some neurological symptoms involving motor coordination and speech.

It has been a challenging time as you all know Chris is essential federal law enforcement employee who must report to work and has not been paid. Though, they say this will temporarily be resolved for 3 weeks, we do not know what to expect or when we will be paid. We have spent spent over 20,000 out of pocket on treatment in 2018. We currently owe 3,500 for medical bills for 2018. Come February we will have to pay 5,000 to continue IVIG treatment.

As vulnerable and hard as it is to share my story and reach out for help. I want to get well and we would not have been able to access care without each and every one of you that has donated. There are no words to express my gratitude for this financial support and the caring and kindness of others during this time. My mother has been here for a year and a half of in home caregiving since I have been disabled. She is truly remarkable as are the other family members who have been care givers along the way. I want to live a beautiful, healthy life with my husband and son. I do not want this disease to steal one more minute of my life or affect the life of the ones I love.

Your donations can help me find my way back to health and independence. We hope you will donate if you can and continue to share this campaign with others. Thank you for holding good wishes for me and my healing as well as my family. My husband, son and mother are incredibly strong, loving, and continue to drive me to fight this disease even when it feels like I haven’t the strength anymore.

With deepest gratitude,
Heather, Chris and Baylin
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Hello Everyone,

August 31st, 2018 marked a year of treatment for me. One surgery, one central line study, ambulance transports, two hospital stays, 6 ER visits. A trip to the east coast for a second opinion that turned into a dead end. One unexpected central line removal due to complications. One possible upcoming surgery for another central line. Countless labs, tests, doctors appointments, medication protocols. Multiple seizures a week, dystonic movement, lack of motor coordination, chronic fatigue, day after day of joint, nerve pain. Fevers, chills, nausea, headaches, cognitive deficits, sensitivity to light and sound. Days in bed, inability to do the things I love. Watching others lives unfold while mine stands still. Losing my independence, my freedom.

This is a year of living with the trials and tribulations of treatment for chronic neurological tick borne disease. A roller coster, a nightmare, a time of learning how strong and resilient you are, feeling loved and supported, feeling alone, isolated, and hopeless. Having a sense of humor when facing the worst. Embracing the days of improvement, cherishing the moments of being out in the world, appreciating all the small beauties and gifts of life, hearing my own voice, dreaming of restored health, holding on to the indications of light at the end of the tunnel. Getting back up when you have gone 5 steps forward to fall 10 steps back.

I have just completed my second month of IVIG infusions 5 days a week 6 hours a day every 4 weeks. It takes 1,000 of blood donors for one bottle of treatment. Blood plasma is clarified and put through a process to create immunoglobulin. In my case, the immunoglobulin is infused to replenish a compromised immune system that needs antibodies to keep fighting bacteria and disease. I am also on a new protocol using malaria drugs to treat Babesiosis, a major culprit that is causing inflammation in the brain. Awaiting my results from my last set of test and my upcoming LLMD appointment in October.

Here we are moving into at least another full year of treatment. Improvements since June have been decrease in seizures, and dystonic movement, decrease in flu like symptoms. Some relief from joint pain, and a decrease in headaches. I will take all victories big or small.

I could not have made it through this year without the tremendous support from so many sources. Your thoughts, prayers, and donations keep us moving forward. Please share my story with others. I want them to know what this disease is capable of and know what symptoms can be an indicator of Lyme disease and co-infections. Donate if you can, keep sending love and healing. We are still in need of financial support to continue to get the medical care I need. There are no words to express how appreciative I am for every contribution be it financial or otherwise. I am blessed to be surrounded by so many with such big hearts.

With love and gratitude,
Heather
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Heather is in the Emergency room once again. I wanted to let everyone know she is doing ok. Please send messages on Facebook to let her know you’re thinking of her. I had to go to work and she’s there by herself. I wish I could call everyone individually but this seems like the best way to get info across without going completely insane explaining things a couple hundred times.

She had a severe seizure last night and resulted in complete loss of functioning movement to her right side. CT scan showed clear of stroke like blockages in the brain, and the experts are saying that mobility of her right arm and leg might take a few days.

Very sad, right when we thought we’ve experienced everything, we’re rushing off to the hospital in the middle of the night.

Many thanks to Nana for taking good care of us over the past few months. Not sure how we would be surviving without you.

Heather is probably going to kill me for posting a video of her, but this shows the reality of what she’s going through from week to week.

We’ll have a more detailed post of current changes in treatment and long term possibilities shortly. Thanks again for everyone’s support.
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This update has felt particularly difficult to write. Come May we will be 8 months into treatment and unfortunately, Heather has been living with the same symptoms with very little significant change. This update is actually very important as most of the funds raised thus far have been utilized toward surgery, medical treatment, the cost of home nursing, and IV medications. We hope to continue to raise more money for this needed imperative, aggressive level of treatment. In addition, after much consideration we have decided to travel to Washington DC to see another one of the most respected LLMD’s in the country for a second opinion in May. This will be a great financial expense and physical stress, but at this stage we know with certainty that a second opinion with the best of the best is warranted and an absolute necessity.

After potential issues with Heather’s line were resolved and she was recovering form surgical pain, she had a brief period of decrease in seizures and more manageable herxing symptoms than previous protocols. The tide turned quickly and she went from only 6 seizures in 2 month period of January-February to 8 seizures just in the month of March. Painful daily dystonic movement, her typical symptoms and completely debilitating fatigue have kept her bed ridden with little stamina to leave the house for short outings.

At her March LLMD appointment her labs revealed a even lower drop in B-12, which led her to develop anemia. Her killer cells have dropped significantly as well reflecting her body still working extremely hard to fight infection. She began a new seizure medication mid March, which has been being slowly increased over time. Heather began having episodes of severe abdominal and back pain over the past month. We thought it may be a kidney infection, but test were negative. After an ER visit, a week ago yesterday for unbearable abdominal/back pain for which they could find no cause, and a seizure brought on by pain, they increased her seizure medication to a higher dose. This seems to be controlling some of the dystonic movement over the last few days and she has had no seizure activity at this point since last Friday. She will be following up with a gastrointestinal doctor for further work up. She will continue IV antibiotics which she has only been on now for 3 1/2 months. IV antibiotics often need to be utilized for 6-12 months to be of benefit. We will retest with a new more comprehensive lab test for lyme and co-infections in May, which will come back in June.

We want to express our deepest gratitude for all the love, support and donations. Your kindness, generosity and support is always with us. We appreciate your willingness to share Heather’s story, to contribute to her campaign. We are holding all of the encouraging loving words and prayers you have sent our way. We are a strong family that just happens to be going through something beyond challenging. Eight months of treatment feels like an eternity, but in the grand scheme of Lyme Disease and Co-Infection treatment it is only a blink. We have a long way to go, but we are determined to fight for the best quality of life for Heather. We will continue to believe that remission is possible and life will return to normal. One day in the future there will be much to celebrate. Please help us make this possible.

With love and appreciation,
Chris, Heather, and Baylin

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$22,301 of $100,000 goal

Raised by 230 people in 16 months
Created November 15, 2017
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