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EMERGENCY: Laura Needs Your Help!

$30,765 of $45,000 goal

Raised by 518 people in 1 month
Created October 23, 2018
My sweet daughter, Laura MacLeod, a beautiful, animal-loving, vivacious young woman is fighting for her life against Chronic Late Stage Neurological Lyme Disease.

It is difficult to convey how hard life has been for Laura over the last few years. She feels the person she was has been stolen from her. She wants so badly to work, to do something she enjoys (surf/travel/teach) or to find the energy to call and talk to an old friend. She has so much passion to change the world,  but most days it is difficult for her to leave her bed. Days consist of 5 hours of IV drips and 100+ pills/day just to keep her going - and it’s not working anymore.

The disease has progressed quickly over the last few years and Laura is a  different person than she was in her 20s. When Lyme spread to her brain, it started causing debilitating neurological problems and constant headaches. The memory loss, difficulty speaking, disorientation, and nerve damage have taken away her ability to function the way she used to. It is difficult for her to read (which used to be her favorite activity), do math, find the right words when she is speaking, etc. and the damage has created problems with balance and coordination. The neurological damage will continue to get worse unless we can send her to an in-patient treatment clinic that specializes in Lyme Disease. If we don’t get her there quickly, it may be irreversible.

A future without treatment looks like: loss of speech, severe and constant seizures, loss of motor function (she will likely need a wheelchair), tremors and debilitating, whole-body pain.

I know that Laura had not seen many of you in years - but know that you are in her heart - she misses all of you (and her social life!) deeply. This fight is serious, and we need your help.

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The treatment center that her doctor recommends is called Klinik St. Georg Center for Internal Medicine, Oncology, Immunology & Environmental Medicine  in Bad Aibling, Germany. It is the best in the world and specializes in the advanced type of Lyme Disease that Laura has. They are known for curing “hopeless patients” a label given to Laura by the US medical system because of their lack of understanding of this disease.

We've been told that $40,000 is the base cost but that it could cost as much as $80,000 because of the severity of her case. We hope to reach $40k so we can give the deposit but we will likely need more so please keep donating! (The total has been updated to $45k to account for the % that GoFundMe takes from the donations)

During the three weeks there, Laura will undergo intensive treatments that are not available anywhere else in the world. Twice her body temperature will be raised to 106-107 degrees through infrared lighting while she is under anesthesia (hyperthermia) in tandem with an accelerated detoxification and repair treatment to flush neurotoxins out of her body after the Lyme bacteria is killed, similar to dialysis. She’ll then receive a week of stem-cell like injections to help reboot her immune system. It has a 70% success rate and even though it’s a risky, last resort treatment, I know Laura is strong enough to get through it. This will be the cure she has so desperately been searching for and her only shot at an illness-free life.

Unfortunately, this is a financial burden that our family cannot bear as we have already spent close to $100,000 on Laura's medical treatment over the last 3 years. The treatments, recovery, supplements and travel expenses are very expensive and have to be paid out-of-pocket as no insurance will cover the cost of anything related to Chronic Lyme  (a break down of costs is at the end). All of the money donated will be used on Laura's treatment and giving her a second chance at health + happiness.

Please help our family save Laura from progressing further into Lyme by helping us raise the money to get her help by FEBRUARY 2019 - that gives us 3 months.

She is far too young to have this be the end of her life. (You can read about her symptoms, below)

I know many of you donated to Laura's 2017 campaign, and we are so very grateful. Because she was unsuccessful in raising the amount needed for a treatment center, she spent the money on antibiotics, a bandaid solution that makes her feel very ill every day. It is no longer working, but is the best the US medical system can offer us until more research is done on Lyme here. That’s why we need to get her to GERMANY!

With St. Georg we have the opportunity to GET HER WELL for LIFE, without the need for the 100+ pills she takes every day or the IV antibiotics that are destroying her from the inside out.  

Please do not put her through another year of waiting for this *life saving* treatment!

I would appreciate ANY and ALL support you could give, be it financial or spreading the word.  By donating, you are giving Laura the opportunity to become the vivacious woman she has always been meant to be -- and I know she looks forward to giving back to the world once she is healed by St. Georg! 

With immense gratitude, 
the MacLeods

Ps. If you’ve read this far but can’t donate, PLEASE hit the share button and share with your networks on Facebook or via email. 1/3 of the donations so far have come from the generosity of strangers and friends of friends, which is so humbling.

PPS. We've found out that GoFundMe takes a % of every donation, so if you would like to donate cost-free via Venmo, that is appreciated as well (@lauramacleod). PayPal is also a no-cost option (Laura.a.macleod@gmail.com)

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WHAT YOUR DONATION WILL COVER

The treatment runs for 21 -28 days. We've been told that $40,000 is the base cost and that it could cost as much as $80,000 because of the severity of her case.

Anything left over will be used to cover flights, accommodations and the medicines she needs to survive until she can get to Germany, which cost more than $3,000/month. We are anticipating that when she returns, her maintenance medicine will cost at least $1,000/month.

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IF YOU WOULD LIKE TO READ LAURA'S STORY IN HER OWN WORDS

Because it went undiagnosed for more than 10 years, my Lyme has run wild, boring holes through my organs, tissue and bones while weakening me so much that I have developed other problems - including a rare MAST Cell syndrome.

I never felt quite right after my diagnosis in high school, but after taking the meds my doctors said I was cleared and that any lingering symptoms were “all in my head” (spoiler alert: they weren’t) and suggested talk therapy as a solution. All the talking didn’t help and my health declined rapidly in 2013-2014 but doctor after doctor was stumped so I put my head down and went back to work, convinced I was just stressed out and adjusting poorly to life in New York City.

By 2015 I couldn’t deny my intuition any more - something was really wrong. I started experiencing debilitating physical symptoms: seizures, blurry vision, arthritis, muscle weakness, migraines, Facial paralysis , insomnia and chronic pain. Plus that time my eyelashes all fell out... cute, right? 

Test after test came back negative until I finally got my neurologist to retest me for Lyme. You guessed it, I had picked up the infection as a kid and the Lyme had been slowly breaking down my system for years. 

While my medical team struggled to figure out why I wasn’t responding to the traditional treatments it spread to my brain, causing debilitating neurological problems. The memory loss, difficulty speaking, disorientation, and nerve damage have taken away my ability to function. The brain damage will continue to get worse unless I can secure treatment, and all of it may not be reversible. (See bottom of post for more info on symptoms)

I am now lucky enough to be in the care of an amazing specialist, but am unable to afford continued treatment because of the overwhelming cost-- Chronic Lyme is NOT covered by insurance because it is STILL not a recognized disease in the eyes of the CDC.  I have exhausted my savings, as has my family, and it’s now time for me to humbly ask my friends and loved ones to support me in any way you can. I am SO CLOSE to beating this thing- I just need a little extra help from you guys to make it happen.

In the last 3 years I have spent more than $150,000 JUST to get diagnosed with this rare set of diseases, seeing 30+ specialists until my current doctor cracked the case: a complex mix of Chronic Lyme , Babesia, SIBO, Bartonella , Epstein Barr, Thyroid Disease, MAST Cell, POTS , PANS, and ME/CFS. Yeah, you read that right; pots AND pans (wish I was joking!). 

With your help, I can do an aggressive round of treatment in  which will be more than $40,000 (thanks, PharmaBro!), plus the additional cost of my medications, antivirals, physical therapy, daily IV treatments and ongoing radiation/ozone therapy. After 15 years on this ride, my hope is that by the end of 2019 I will be in remission and will be able to LIVE and WORK again. I am SO CLOSE to beating this thing, I can feel it.


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Q &A: The Questions I'm Most Commonly Asked

Q. I don't know anything about Lyme. Give me the highlight reel.
A. Watch the trailer for the documentary, Under Our Skin , for the 60 second overview of the disease, how it's spreading (quickly!) and what life looks like when you have Lyme. (  http://underourskin.com/)


Q. I've heard of Lyme, but I thought it was pretty common and easy to treat?
A. Lyme is the fastest growing disease in America, infecting more people than AIDS and Breast Cancer COMBINED, so it is pretty common. 20% of people find the tick, go to the doctor, and are cleared after 30 days of antibiotics. If you don't find the tick, or if you are bitten by a lyme-transmitting insect that leaves a smaller mark (mosquito, spider, etc),  symptoms will appear months or years later (like me). It is also transmitted to children in-utero, so it's possible to have Lyme without even receiving a bite. 

Q. What does it feel like to have Lyme?
Lonely. Most patients see 10-15 specialists before they find a Lyme-literate doctor who is willing to treat them. Hearing that it's "all in your head" from doctor after doctor is devestating -- especially when your body is screaming for help -- which is why the biggest killer of Lyme patients is suicide, not their symptoms. For more on this, check out the trailer for Under Our Skin or Unrest , the documentaries that helped me recognize my symptoms and made me realize that it is real and that I am not alone. 
https://vimeo.com/37403735)
https://vimeo.com/ondemand/unrest)

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Announcement For New England Friends :

If you've "had" Lyme, but still feel off, consider this list of symptoms and get re-tested!! If it goes untreated, Lyme disease can lead to problems with your skin, joints, nervous system, and heart. These can occur weeks, months, or even years after your tick bite (like me!). The problems can get better, but if mistreated will last the rest of your life.

I have all of the following:

Cognitive Symptoms Of Chronic Lyme:
Memory impairment/loss.
Slowed processing of information.
Word-finding problems/ reduced verbal fluency.
Dyslexia and problems dealing with numbers.
Processing impairment (losing things, getting lost)
Poor abstract reasoning
Losses in executive functions such as inability to maintain divided or sustained attention
Poor mental tracking and scanning (loss in ability to follow daily affairs, which is complicated by persistent distractibility)

Neurological symptoms:
Headaches.
Neuralgia: a pricking/stinging pain, excessive sensitivity to light touch or pressure.
Cranial nerve disorders: facial palsy, double vision, hearing loss, dizziness and tinnitus.
Seizures.
Autonomic dysfunction – problems in regulation of pulse and blood pressure eg POTS 

Lyme-related Psychiatric Symptoms:
Emotional lability: rapid mood swings, episodes of rage, crying, reduced impulse control.
Depression.
Anxiety/Panic attacks.
Sleep Disorders.

A note about finding the right doctors (LLDs) and why it is not covered by insurance:
The CDC refuses to acknowledge that many Lyme patients are not cured by short-term antibiotics, so patients (like me!) who continue to suffer from Lyme are often not covered by insurance. 

Doctors who do understand Chronic Lyme Disease and offer longer term treatment for patients are often cloaked in secrecy because they risk their licenses for treating an illness that “doesn’t exist”, or for billing their care in such a way as to get coverage for their suffering patients. The names of these doctors only spread by word of mouth and through secret lists maintained by Lyme Disease advocacy groups and do not take insurance. These doctors who understand Lyme Disease and treat beyond the short-term are known as Lyme Literate – LLMDs, for short.

I now have binders and binders of information on this subject if you or a loved one find yourself with Lyme or other auto-immune challenges. Please contact me!

No one should have to face bankruptcy to recover from an illness obtained from a bug bite in this day and age. No one. And that is why I speak out, and will continue to speak out about the cost of getting well.






 


 
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SURPRISE!!

Looking for last minute gift ideas, stocking stuffers or just a little #selfcare goodie? Just want to support a good cause?

I have something new in the mix when I first started going to IV treatments it realllllllly freaked me out so I brought this big green stone Buddha with me to help me stay zen when I was there alone.

Wellllll, as I started to do more and more treatments for my Late Stage Neurological Lyme Disease, the the big stone Buddha became less and less convenient and the Buddha Buddy was born!

Handmade by yours truly from super light wood, these double-sided little babies are up for grabs.

They help me remain focused on your healing and bring a little bit of humanity to often sterile doctor/hospital environments. I bet they could also work their magic in an office or home altar area. ✨

They’re $15/each and about 5 inches tall. Message me if you’re interested; I can get them to you lickity split.

All proceeds go towards my life-saving treatment in Germany at #stgeorgklinik ✨✨✨

(read more at GoFundMe.com/savelauranow or email me at laura.a.macleod@gmail.com)
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Hi beautiful people!

My dear heart of a friend @yarndiva11 made this *gorgeous* quilt by hand for me to raffle off to anyone who donates to my Treatment Fund until the 22 (so I can get it to you by Xmas if you’re the lucky winner!).

Just donate any amount via Venmo, PayPal or My GoFundMe (GoFundMe.com/savelauranow) and you’ll get one entry. You can get multiple entries for donating multiple times, don’t worry

It’s queen size, all cotton and easy to wash. It’s a traditional Amish pattern but with the coolest Batik fabric.

I’m still very far away from being able to afford my life-saving treatment at #stgeorgklinik in Germany, and every donation gets me one step closer to beating this horrible disease.

Please consider donating and/or sharing with your own communities - I believe in miracles!

Maximum love and dreaming of better, healthier days,
Laura
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Thank you SO much to everyone who has donated. Many of you have chosen to do so anonymously so I have been unable to thank you personally. Please know how grateful I am for your love, support and inspiration.

Love,
Laura
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HEALTH UPDATE// I have been experiencing the weirdest symptoms over the last few days including massively swollen eyes and near constant facial twitching.
Turns out, these are symptoms that the #lymedisease is traveling rapidly through my brain and it sure does feel like it. Geeze, this pain is serious.

If I don’t make it to #stgeorgklinik in Germany soon, things will get much, much worse. Thank you to everyone who has already helped me get one step closer to living life again.

If you’re feeling the holiday spirit, please consider donating to my #gofundme (link in bio) or sharing my story. You are SO loved.

Xoxo,
Laura
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$30,765 of $45,000 goal

Raised by 518 people in 1 month
Created October 23, 2018
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