Help Maggie Beat Lyme Disease! Fund
Donation protected
As long as I've known Maggie, since seventh grade to be exact, she's been active. 
Here we are in those wonderfully awkward middle school years. Circa 2001.
Softball had been her world, and she kept on the move pretty much all the way out of college.
In early August 2016, two weeks after Maggie and Gary arrived in Los Angeles, she contracted what she assumed was a "summer flu." Acute, localized migraines began recurring every few days, and each one put her out of commission for at least a day. No more Maggie on the move.
Eventually these migraines led to fully exhausting all of her PTO and sick time, creating a big problem.
An odd mix of chronic fatigue, nausea, shortness of breath, even when taking the dogs out to the back yard, drove her to see a pretty amazing doctor.
She's extremely lucky in that her insurance coverage found a doctor in West Hollywood who practices integrative medicine. Instead of just drawing vials of blood (probably up to 50+ now), he pulled out all of the stops trying to figure out what was wrong with her.
As it turns out, Maggie is now one of the 30,000 people per year who is diagnosed with Lyme disease. It is a difficult disease to diagnose and sometimes more difficult to treat.
This disease is almost completely invsible. Most suffer in silence. Currently, Maggie is dealing with unexplained tremors, severe sensitivity to sound, blurry vision, vertigo, car sickness, short term memory loss, difficulty speaking, difficulty reading, overnight rash, and nerve pain. Many would say, "You don't even look sick." That's one of the worst parts: the outside world thinking you're one way, and knowing on the inside just how horrible you truly feel.
This is where you all hopefully will help! Because Lyme disease takes a lot of time, money, and resources, insurance does NOT cover medication and appointments. That's right. Think about the adjustments you might see on medical bills. Maggie won't get those. Full price. Maggie will also have to take leave from work, which means she's also not getting paid. She MAY be able to collect 60% disability, for an undetermined amount of time. And we all know bill collectors don't care, as long as they get their money.
Lyme doctors generally don't take insurance because they would lose money if they did. Insurance companies reimburse doctors based on the amount of time they expect an appointment to take. Ever notice when you see a regular doctor, he generally spends about 10 minutes with you, or 15 max...That is because that is all the time he can spend with you and not lose money.
LLMD's (Lyme Literate Medical Doctors) also treat their patients the best they know how--and that usually involves long term antibiotics. There's not a whole lot of research around these, only living proof that it works. The CDC doesn't approve of this method, and any doctor who prescribes these drugs for Lyme patients risk losing their medical licenses. LLMD's are activists--involved in the Lyme community, working towards a cure, and speaking out against the politicizing of Lyme Disease. There's no reason anyone should have to worry about managing an insane amount of bills while fighting for their life.
Your donations will help with medical costs as well as living expenses--the first appointment, not including labwork, supplements, or medications, is $375. And it's just the first of many she'll have.
Below is a a timeline of all she's been through, plainly laid out with facts. Many of you who will donate likely know Maggie, and I am so thankful you've loved her enough to help her fight this, because that's what she is. She's a fighter. She's fought for me more times than I can count, and she's been a fierce friend. Though I can't be by her side through this, and that hurts, I can at least hope this may do some good. This world needs a little more love. Let's help her through this.
The Timeline
1. In early August, she went to an urgent care clinic in Hollywood 3 times in 10 days. An EKG and plenty of blood drawn produced 2 interesting results:
-Vitamin D deficiency (later disproved)
-Hypercalcemia (high calcium levels)
2. She had some trouble understanding the test results so a co-worker who has a thyroid condition helped her. She noticed a couple things that seemed off and recommended that Maggie see her endocrinologist. The endocrinologists did additional testing and only came up with hypercalcemia. Back to the drawing board again, but at least she could rule something out.
3. This is where her new primary care doctor comes in. A friend recommended she see this doctor who specializes in infectious diseases and diagnostic medicine.
4. Dr. Spar—immediately thought Autoimmune, did emergency MRI after finding hyper-reflexive joints (issue related to motor neurons, signaling something neurological)
5. MRI for Multiple Sclerosis and similar illnesses came back clear
6. Dr. Cook – Neurologist, diagnosed migraines. Topamax made her worse, second medicine made her feel like I was having a heart attack. Suggested Botox injections for migraine treatment.
7. Dr. Spar – Doesn’t think migraines is the right way to go. 1 of 2 Lyme tests came back positive, and he felt pretty sure that rash is related to whatever illness this is. Suggested she see Lyme specialist.
8. Dr. Spar—went back to Dr. Spar to see more test results. Not all are in yet, but he suggested again that she see a Lyme specialist because she did test positive on 1 of 2 tests and another is pending. Lyme is a clinical diagnosis, and she has been officially diagnosed.
9. Dr. Gisler—setting up appointment with Lyme Specialist on November 30.
We don’t yet know for sure exactly what the treatment will be as every Lyme Disease sufferer can carry different co-infections and viruses and will react differently to different protocols. These are some of the options:
- IV antibiotics
- Oral antibiotics
- IV vitamin infusions
- Antimicrobials
- Detoxification methods
- High quality supplements
- Holistic therapies
Recovery from this awful disease is definitely possible and I am hopeful that she can slowly regain her life back. I know that it’s going to be a very long road and a tough process both mentally and physically as the treatment often makes you even sicker (when you start to kill off the bacteria) before you start to feel better. Although definitely not at the top of her game, this girl has a very strong mind.
I would really appreciate your support in any way you can. Any donation, no matter how small would be amazing! This process can last years, and costs tens of thousands of dollars, all while you're forced to put your life on hold. This whole experience can be terrifying, and helping take the edge of it is my goal.
If you can't donate you can always share my Gofundme page on your social media. :)
Here we are in those wonderfully awkward middle school years. Circa 2001.Softball had been her world, and she kept on the move pretty much all the way out of college.
In early August 2016, two weeks after Maggie and Gary arrived in Los Angeles, she contracted what she assumed was a "summer flu." Acute, localized migraines began recurring every few days, and each one put her out of commission for at least a day. No more Maggie on the move.
Eventually these migraines led to fully exhausting all of her PTO and sick time, creating a big problem.
An odd mix of chronic fatigue, nausea, shortness of breath, even when taking the dogs out to the back yard, drove her to see a pretty amazing doctor.
She's extremely lucky in that her insurance coverage found a doctor in West Hollywood who practices integrative medicine. Instead of just drawing vials of blood (probably up to 50+ now), he pulled out all of the stops trying to figure out what was wrong with her.
As it turns out, Maggie is now one of the 30,000 people per year who is diagnosed with Lyme disease. It is a difficult disease to diagnose and sometimes more difficult to treat.
This disease is almost completely invsible. Most suffer in silence. Currently, Maggie is dealing with unexplained tremors, severe sensitivity to sound, blurry vision, vertigo, car sickness, short term memory loss, difficulty speaking, difficulty reading, overnight rash, and nerve pain. Many would say, "You don't even look sick." That's one of the worst parts: the outside world thinking you're one way, and knowing on the inside just how horrible you truly feel.
This is where you all hopefully will help! Because Lyme disease takes a lot of time, money, and resources, insurance does NOT cover medication and appointments. That's right. Think about the adjustments you might see on medical bills. Maggie won't get those. Full price. Maggie will also have to take leave from work, which means she's also not getting paid. She MAY be able to collect 60% disability, for an undetermined amount of time. And we all know bill collectors don't care, as long as they get their money.
Lyme doctors generally don't take insurance because they would lose money if they did. Insurance companies reimburse doctors based on the amount of time they expect an appointment to take. Ever notice when you see a regular doctor, he generally spends about 10 minutes with you, or 15 max...That is because that is all the time he can spend with you and not lose money.
LLMD's (Lyme Literate Medical Doctors) also treat their patients the best they know how--and that usually involves long term antibiotics. There's not a whole lot of research around these, only living proof that it works. The CDC doesn't approve of this method, and any doctor who prescribes these drugs for Lyme patients risk losing their medical licenses. LLMD's are activists--involved in the Lyme community, working towards a cure, and speaking out against the politicizing of Lyme Disease. There's no reason anyone should have to worry about managing an insane amount of bills while fighting for their life.
Your donations will help with medical costs as well as living expenses--the first appointment, not including labwork, supplements, or medications, is $375. And it's just the first of many she'll have.
Below is a a timeline of all she's been through, plainly laid out with facts. Many of you who will donate likely know Maggie, and I am so thankful you've loved her enough to help her fight this, because that's what she is. She's a fighter. She's fought for me more times than I can count, and she's been a fierce friend. Though I can't be by her side through this, and that hurts, I can at least hope this may do some good. This world needs a little more love. Let's help her through this.
The Timeline
1. In early August, she went to an urgent care clinic in Hollywood 3 times in 10 days. An EKG and plenty of blood drawn produced 2 interesting results:
-Vitamin D deficiency (later disproved)
-Hypercalcemia (high calcium levels)
2. She had some trouble understanding the test results so a co-worker who has a thyroid condition helped her. She noticed a couple things that seemed off and recommended that Maggie see her endocrinologist. The endocrinologists did additional testing and only came up with hypercalcemia. Back to the drawing board again, but at least she could rule something out.
3. This is where her new primary care doctor comes in. A friend recommended she see this doctor who specializes in infectious diseases and diagnostic medicine.
4. Dr. Spar—immediately thought Autoimmune, did emergency MRI after finding hyper-reflexive joints (issue related to motor neurons, signaling something neurological)
5. MRI for Multiple Sclerosis and similar illnesses came back clear
6. Dr. Cook – Neurologist, diagnosed migraines. Topamax made her worse, second medicine made her feel like I was having a heart attack. Suggested Botox injections for migraine treatment.
7. Dr. Spar – Doesn’t think migraines is the right way to go. 1 of 2 Lyme tests came back positive, and he felt pretty sure that rash is related to whatever illness this is. Suggested she see Lyme specialist.
8. Dr. Spar—went back to Dr. Spar to see more test results. Not all are in yet, but he suggested again that she see a Lyme specialist because she did test positive on 1 of 2 tests and another is pending. Lyme is a clinical diagnosis, and she has been officially diagnosed.
9. Dr. Gisler—setting up appointment with Lyme Specialist on November 30.
We don’t yet know for sure exactly what the treatment will be as every Lyme Disease sufferer can carry different co-infections and viruses and will react differently to different protocols. These are some of the options:
- IV antibiotics
- Oral antibiotics
- IV vitamin infusions
- Antimicrobials
- Detoxification methods
- High quality supplements
- Holistic therapies
Recovery from this awful disease is definitely possible and I am hopeful that she can slowly regain her life back. I know that it’s going to be a very long road and a tough process both mentally and physically as the treatment often makes you even sicker (when you start to kill off the bacteria) before you start to feel better. Although definitely not at the top of her game, this girl has a very strong mind.
I would really appreciate your support in any way you can. Any donation, no matter how small would be amazing! This process can last years, and costs tens of thousands of dollars, all while you're forced to put your life on hold. This whole experience can be terrifying, and helping take the edge of it is my goal.
If you can't donate you can always share my Gofundme page on your social media. :)
Organizer and beneficiary
Blake Haney
Organizer
Nashville, TN
Maggie Renfro
Beneficiary