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Dig Deep For Don - Chronic Lyme Disease

$43,900 of $40,000 goal

Raised by 169 people in 3 months
Created February 20, 2019
Dear Beloved Friend or Family Member, Admired Acquaintance, or Complete Awesome Stranger,

I’m Kim Jordan and I'm writing to you on behalf of my dear friend, Don Wyatt, who is suffering immeasurably with Chronic Lyme Disease. If you’ve experienced this illness, directly or indirectly, you have an idea of what he’s going through. If not, please read my brief explanation. It could save you or someone you love from this misery.

LYME BASICS

Lyme is the most commonly occurring vector-borne disease in the US today. Humans get infected when they're bitten by a deer tick that attaches long enough to inject the bacteria Borrelia burgdorferi into the bloodstream. Signs of infection include flu-like symptoms and, in some cases, a bull’s eye rash. If identified and treated quickly, the right course of antibiotics can rid the blood of the infection. If not, the Borrelia spirochetes drill through tissue to invade other systems of the body.

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Once disseminated, Lyme can present symptoms within weeks or remain dormant for decades. The skin, joints, heart, and nervous system are common areas of infection. Because of the variety of symptoms, (particularly the neurological,) Lyme is called “the Great Imitator.” It mimics the diseases MS, ALS, and bipolar disorder, to name a few. To further complicate things, diagnostic testing has been notoriously unreliable. Many patients have gone from medical doctor to alternative doctor and back again - being misdiagnosed, inappropriately treated, and even told, “It’s all in your head.”  

Meanwhile, the disease has progressed and the spirochetes have become more deeply entrenched. They've also formed colonies that can evade attack by secreting a gelatinous shield called a biofilm. Adding to the challenge, hosts were often co-infected with other strains of bacteria as well as viruses and molds that exacerbate their level of toxicity.

Chronic Lyme patients can get well, especially now due to recent progress made by devoted researchers. The road to recovery, however, is long and must be strategic because of multiple system dissemination, the challenge of biofilm and co-infections, and the weakened state of the patient caused by delayed treatment as well as the toxic die-off from effective treatment.  

Insurance companies, however, aren't required to cover Lyme Disease treatment beyond one course of antibiotics. I won't go into the details here, but Chronic Lyme is a controversial and heavily-politicized topic. Suffice it to say that many individuals and families have gone into economic hardship from the combination of disability, desperation, and out-of-pocket expenses, as is the case for our hero, Don. If you want more info about Lyme Disease, you’ll find links at the end of this campaign.

OUR HERO, DON

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Prior to the presentation of this illness, Don was a wonder to behold. Most of you can conjure images of him as an animated storyteller of wild tales peppered with sound effects, expletives, and Southern simile. His laugh was infectious and he was generous to a fault. He was an adoring husband to his wife, Anna, and a smitten father to his daughter, Bo.

Though his love for his family is still as strong and his figure of speech is still intact, the sound effects are gone and laughter is rare. He struggles to process information, his voice is often faint and raspy, and most days he is bedridden for at least a good part of the day. In his own words, here's Don’s story. (Warning: I transcribed this story during a phone interview, and though I've edited out his searching for words, the expletives remain.)

Lyme can stay dormant for decades. There’s even a theory that Alzheimer’s is undiagnosed Lyme. Anyway, I grew up running through the woods of Crowder’s Mountain, NC -  climbing trees, catching crawfish and snakes, trapping rabbits. I’ve pulled a lot of ticks off of me, but when I was around 28 and living in Raleigh - that’s the bastard I remember because the bite got big and red and infected. I could have had a bull’s eye rash but I don’t remember because people weren’t looking for those back then. Besides, it was on my nuts.

I didn’t start to feel sick though until after I turned 50. I started getting skin infections, severe headaches, chronic sinus infections. I felt like I’d been snorting fiberglass, so I went to my doctor and was diagnosed with Hep C. I quit drinking, took the cure (Harvoni) and felt like something was lifted off me, but that only lasted six months. Then I started feeling bad again. I could' get out of bed a lot of the time, so I went to a naturopath who charged me 3K for blood work alone plus $750 visit. Nothing changed.

Next, I went to a holistic retreat where all they fed me was lettuce and I felt better again, briefly. Then I went to an infectious disease doctor at Stanford and he told me to go to a psychiatrist. I got an MRI. I’m still paying for that G@d D#@m thing. Hell, for a lot of this stuff.

I took a Transcendental Meditation class for pain management. Did two years of immunotherapy. Went to a clinic in Mexico. I was willing to do anything to feel normal again. Spent globs of money and ended up bedridden for two straight months last winter. Then a friend came to visit and he told me I had the same symptoms his friend with Lyme Disease had, so I bought a book about it, took the clinical self-test, and scored an 82.

Then I just started reading everything I could about Lyme - on days when I felt good enough to. I read books, blogs, forums, and then found the movie Under Our Skin. The poor bastards in that documentary - their story is my story! It’s the same f*#@king thing! I found a Lyme specialist in SF who gave me the diagnostic test. I was positive for Borrelia and two co-infections, so I went on her strict diet and followed her protocol for over 6 months. I’m still too sick to get out of bed most days though. Healing and recovering from Lyme is hell. You have to detox your body, break down the biofilm, attack the spirochetes, detox the body, rebuild the body, and then do it again with different drugs. Now we don't have the money to continue treatment.

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Days go by and I can’t remember anything. It stresses my brain to think. If you asked me to do a simple math problem right now it would be painful. Sometimes I don’t know how to phrase things. I can’t do simple tasks. Can’t drive. But Chronic Lyme symptoms come and go - so occasionally I have a good day. I feel like a normal person and in my mind, I perceive I’m getting better. I exercise and do something fun with Bo. Then I’m down again. I feel like I'm strapped to the bed, like rats are chewing on my feet, demons are attacking my joints, my eyelids hurt, my skin hurts. Lately, I’ve been waking up in the middle of the night with every nerve in my body firing. I feel like I'm losing control of my muscles. I try not to think about what a relief it would be to not wake up in the morning because I want to live to see Bo grow up, but I feel like I'm dying. This disease is soul-sucking. I hope you never get it.

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UNCLE DON NEEDS YOU

So, dear friend, that is Don's story. You can probably tell he really wants his life back.

I offered to be his advocate when Anna called me in tears saying, “I have a crisis and I need help.” Don and Anna tapped out their credit trying to get Don well. He can't work and Anna is exhausting herself by caring for Bo, nursing her sick husband, and trying to save their business. They live in the Bay Area of California and have no hope of having money for out-of-pocket expenses for at least a year. They do have private insurance and it should cover the antibiotics, but that will be all. 

We fear what could happen if Don languishes without treatment. His worst days are a horror to witness. Many of you know Jamie Johnson. She called me sobbing while helping to care for Don this past summer because he was so ill she thought he was going to die. Many Lyme patients describe the experience as being in a torture chamber, and permanent neurological damage and death can occur with Chronic (late-stage) Lyme, so Uncle Don really does need your help! 

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HERE'S THE PLAN


After doing extensive research together, Don chose a new Lyme doctor with a more aggressive, integrative approach and a more positive outlook - Dr. Grieder of San Francisco Preventative Medicine is our guy. An ND who works with the MDs in his practice, Dr. Grieder utilizes cutting-edge treatments, has excellent Yelp reviews, is a little less expensive than Don's last doctor, and comes referred by a friend of a friend who was treated by him for a severe case of Chronic Lyme - and she’s been symptom-free for over a year and a half. 

I already collected cash donations to cover his first two visits. (Thank you so much, Raleigh, NC!) His initial visit just happened on 2/19, and Don and Dr. Grieder really hit it off. (Thankfully, considering Don filled out his new patient form with, "I feel like boiled rat sh*t.") Now, all we need is 40K to cover one year of treatment. That's the ballpark estimate I was given by Dr. Grieder's office. If we hit this goal, the amount will cover Don's office and follow up visits, prescriptions and supplements, Low Dose Antigen Immunotherapy, IV Ketamine Therapy (for pain relief), and Ozone Therapy (to destroy pathogens and reduce inflammation). If we fall short, Don will still move forward with treatment - he'll just have to suffer more while he's getting it. Regardless, all the money we raise will go toward Don's medical expenses only. You'll find links to more info on Dr. Grieder and these therapies in at the end of this campaign.

I’ve known Don for 30 years. He inspired me to move to San Francisco so I would have never met most of you had it not been for him. Though he’s been a solid friend in many ways over the years, he really blew me away when he and Anna gave me a goddaughter to adore. If you know Don, I'm sure he's done something for you, too.

The truth is, Don's given a great deal to his community over the years, so if he ever made you laugh out loud, or gave you a job, or booked your band, or hired you to DJ, or loaned you money, or bailed you out of jail (you know who you are,) or bought you a meal or a refreshing adult beverage (or many,) then please consider giving back. 

Giving feels good. Giving is good karma. I have no doubt your kindness will come back to you. So, I ask you to mobilize with me, people! In the words of Hunter S. Thompson, “WHEN THE GOING GETS WEIRD, THE WEIRD TURN PRO.”

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So, please donate whatever you can - whether 10 bucks, 100, or 1K+!  Then repost this campaign on your Fb page. Tweet! Post to Instagram!  Please also search your contacts and personally invite those you know who might want to contribute. Make phone calls or email those who are not on social media! We need everyone to DIG DEEP FOR DON! That's our hashtag and that is the beauty of crowdfunding. Everyone participates and miracles happen. 

(You can also use #lymewarrior, #lymedisease, #invisibleillness, #chroniclyme, #tickborneillness, #gofundme, #medical, #money, #support, and #campaign.)

So, I thank you for helping to bring Don Wyatt’s laughter back into the world, I thank you for giving Bo Wyatt back her fun-loving papa, and I thank for answering the call of our very beloved Anna Wyatt.

From the bottom of my heart, Kim 

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YOUR VERY OWN COMMEMORATIVE CAMPAIGN MUG!


Hoshi Hana of artlovefriend generously designed and donated some unique mugs for this campaign. They were a gift to individuals who donated $500 or more. Though we officially ended the incentives program on March, 9th, (two weeks after our starting date and just a few days after we were fully funded,) you can still buy a commemorative campaign mug through the artlovefriend.com website for. Proceeds at the point will be equally divided between Hoshi Hana and the LymeLight Foundation , a non-profit that provides grants for Lyme Disease treatment to eligible children and young adults.  You can also follow Hoshi Hana on Instagram: @artlovefriend. Scroll to see the mugs!

I call this item "Coffee with Don to Infinity." Come on! You know you'd enjoy seizing the day with a gander at Don while sipping your hot java! Scroll down and let your imagination wander.

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OR you can choose the commemorative "Cute as a Hair on a Biscuit" mug. It's really up to you! This item was designed in honor of my favorite Donism.  

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Just a few more things.

I'll keep this campaign open for a year so I can bring you updates of Don's progress.

Van Alston has generously offered to host a celebration party for Don when he is well. This event will be held at Slims in downtown Raleigh, North Carolina. It might take a year or so, but it will happen. We're making it happen! 

Th-th-that's all, folks!
Please check for ticks after enjoying the outdoors! We want you all well!

PHOTO CREDITS
 

Don w/ Cigar by Susan Crane
Borrelia burgdoferi image by the CDC 
Most recent photo of Don by Bo Wyatt
"Uncle Don Wants You" compliments of Marlene Deel
Hunter S. Thompson in Fuck (film) by Steve Anderson (director)

LYME LINKS 

As mentioned, Lyme is heavily politicized. I chose these links based on my recent research and knowledge of Don's experience. 

Most Commonly Occurring Vector-Borne Disease in the US (CDC)

Lyme Prevention 

Lyme Basics w/ symptoms list 

Lyme Stages 

Chronic Lyme - profound debilitation 

Under Our Skin - the film (This film delves into Chronic Lyme political theories, controversy and activism.)

Under Our Skin Part II - Emergence 

Lyme Tests

Lyme History

Biofilm 

Co-infections 

Lyme Brain 

Lyme & insurance 

Lyme Disease - Human Torture Chamber 

Lyme Carditis - can be fatal 

Long Road to Recovery 

San Francisco Preventive Medical Group 

Dr. Grieder 

Low Dose Immunotherapy 

Ozone Therapy

Ozone Therapy for Treating Lyme 

Ketamine Infusions for Neuropathic Pain 

Can Lyme Ever Be Truly Cured? 

Lyme Rage
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Don's Go Fund Me Update - Part II

My apology for having to split this update into two parts. GoFundMe restricts the length of the text. Here is the excerpt I cut out to make the first post. My thought was to save it for #3 but I missed deleting my comment on Don coming to NC for the summer, so here goes!

Spending the summer in NC
Don had one full week of feeling almost normal recently, but it was a rare week when the fog didn’t roll in. His remaining “bad days” are obviously being triggered by changes in the weather, particularly the barometric pressure changes the Bay Area is so known for. In his words, “The fog crawls inside me and squeezes my insides.” This type of sensitivity is very common with Chronic Lyme sufferers with extreme mold toxicity.

So, Don talked to Dr. Grieder about the benefits of spending a couple of months in NC this summer and the doc agreed that the relief his body and mind would get would be worth it. If he gets to take this hiatus, he will remain on his strict diet and regimen of Chlorostyromine and will take vitamins at night to replace the ones excreted by the binder.

How is he going to pay for that?!

A good question and I’ll answer it in a minute, but first a financial report: Don has spent 13.5 K of his GoFundMe money so far, with the most expensive (and intensive) treatments already completed.

As for the trip, Don has been wanting to sell his Harley Davidson for some time but didn't have the energy he needed to get it ready to sell or even deal with the sale. Now he’s ready to bust those moves. Assuming he finds a buyer and continues to feel better, he will use the money from the sale to pay some bills and also get to NC. More on that if and when it all happens.

To conclude, let me say that I’m very happy with the results of our combined efforts thus far. To say that our hero Don has been exercising some impressive will to get well is an understatement. I’m also fully supportive of him getting out of the fog for some relief this summer as he has noticed definite improvements in his symptoms when he has visited NC in the past. I think it will do him a world of good and help him stay on the nasty mold-binder protocol.

(Thank you, Melinda, for submitting the great pics of you & Jody enjoying your Don mugs. Also, I included a pic of the poem I wrote for the back of Danny's custom mug, Cheers!)
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GO FUND ME UPDATE #2

Dear Dig Deep for Don Donors,

I bring you a very promising update. Don just completed his 6th week of treatment with Dr. Greider, and guess what? His health is noticeably improved in almost every way. In his own words, he is no longer “an invalid with a mush brain.” Yay!!! Go, team!!!

Now, let’s get specific with what he’s done, where he is at now, and what he will be doing next. This post is detailed and thorough because you deserve that. If you don’t have the time to read it; however, feel free to skip to the end for a quick quote from Don.

Ketamine
You may recall that I already reported some improvement in the constant, extreme nerve pain/tingling/numbness that Don was experiencing in his feet. This neuropathy was one of the main symptoms that compelled me to start creating his campaign, back at the beginning of the year when it began creeping up his legs to his knees. In addition to the above symptoms, the neuropathy was causing sleep deprivation, extreme anxiety and depression. I remember him saying that it felt like a ghost was growing inside him.

This “ghost” was a huge concern because late stage Lyme patients with neuropathy have been known to lose their ability to walk. Thanks to all of us though, Don was able to address this issue by completing a full course of 8 treatments of ketamine therapy at SF Preventative Medical Group. His symptoms are absent on most days now and are much milder on days when he does experience them! As he continues to work through the rest of his treatment plan, we hope that the remaining symptoms will resolve. As for the depression and anxiety, Don is acting and sounding more like himself again. He is talking more animatedly and with a very positive tone. He is even laughing again.

Ozone
Don has also completed his rather intense course of ozone therapy. This protocol required him to have a quart of blood pumped out of his arm with a 20 gauge syringe. The blood was then collected in a glass jar, pressurized with ozone, agitated and pumped back into his body. This treatment was repeated 10 times during each session for what is called the Ozone Ten Pass. Don completed 10 Ten Passes (plus two shorter runs to prep him for the 10.) There were times when the process went smoothly and times when it didn’t. It would take anywhere from 1 1/2 to 3 1/2 hours to complete a ten pass, depending on whether his blood coagulated. He said it was grueling but totally worth it.

The Ozone Ten Pass, which filters the Lyme bacterias and mold out of the blood, is touted as being highly effective. Judging by Don’s energy level, I think it’s safe to say we concur. Don used to have mostly bedridden days with a few good days a month thrown in. Now, he’s having up to four good days a week and those “good days are giving him the wherewithal to work through the bad ones.”

The bad days are still bad though - I won’t lie! Some days he tells me he feels like someone is drilling into his spine or driving a spike through his neck into his skull, or his lips feel like someone put acid on them, and his last text to me just said, “I feel like a moldy pile of bear shit.” But it’s hard to say how much of his current misery is due to active Lyme and/or mold or the dead Lyme and mold that backs up in his body from the detox treatments. Or some horrible combination of both.
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On a positive note, Don also reports that his brain is “working faster” though he’s still worried about his memory. Some days he still can’t remember things like his SSN or the name of the town he lives in. BUT he does have the mental wherewithal to go to work for an hour or two on his good days now and he’s also able to help Anna out at home and spend more quality time with Bo.

Low Dose Immunotherapy
Don has finished Phase I of the LDI. This immune-enhancing treatment is designed to have long-term effects, so it should continue to improve Don’s health for months to come. Woot!

Lymphatic Drainage
Don is injecting himself with a medicine that helps his lymphatic system handle the heavy load of toxic die-off. He will continue these shots as long as he is detoxing the Lyme, Babesia co-infection, and mold.

Mold
Though the Ozone Treatments have surely knocked Don’s mold count down, his next course treatment will focus mainly on this issue. (You may recall from my last update that his mold count was off the chart. Dr. Grieder has never seen anything like it.) So, Dr. Grieder is shifting Don’s plan from the more expensive Ozone and Ketamine treatments to a lengthy course of Cholestyramine, a cholesterol medication that was discovered to have mold-binding properties. He takes it in a powder form that he mixes (in large doses) with water. He says it’s like drinking a glass of concrete that forms into a rock in his stomach, and yes, he says that it hurts. Plus, he has to take it two times a day on an empty stomach and then 30 minutes later he has to eat a small snack to stimulate bile production. Then he can’t eat again for 4 hours. These two medication rounds take all day to complete so he doesn’t eat a “full meal” until dinner. (Such as it is, for he is on a radically restricted diet.)

IV Lounge
There’s a complication with the mold-binder though; it also binds to the nutrients in Don’s food. So, he’s going to Dr. Grieder’s “IV Lounge” to get Meyer’s Cocktails (vitamin infusions) as well as the PK Protocol (a cellular detox for the brain and nervous system) and intravenous Glutathione. (Lyme patients are notoriously deficient in this anti-oxidant and immune-enhancer.)

Quercetin
Don is also taking a supplement called Quercitin for Mast Cell Activation Syndrome. Once the mold issue is abated, his next step will be to focus on healing this hyper-allergic situation that is a complication of the Lyme Disease and the cause of his years of chronic sinus infections.

To conclude, let me say that I’m very happy with the results of our combined efforts thus far. To say that our hero Don has been exercising some impressive will to get well is an understatement. I’m also fully supportive of him getting out of the fog for some relief this summer as he has noticed definite improvements in his symptoms when he has visited NC in the past. I think it will do him a world of good and help him stay on the nasty mold-binder protocol.

And now, a few words from the Don himself:

I was like a lobotomized person not long ago. Even when I could sleep, I dreamed I was being tortured. But I can engage with people mentally now. I just had a really good day and almost ran a 10-minute mile! I don’t really know how to thank everyone. I wouldn’t have been able to get any of these treatments without this campaign. It saved my life.

Thanks for reading, everybody. I included some pics for your viewing pleasure: Don, Anna & Bo on the very recent eve of Bo's performance in A Midsummer Night's Dream; the custom mug that Hoshi Hana created for our generous megadonor, Danny Moore; and Jody from Kentucky enjoying his "Coffee to Infinity with Don" mug.

Love, Kim
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Dear Dig Deep for Don Donors,

Don had several treatments with Dr. Grieder in March, so we're issuing our first progress report:

The Ketamine infusions have already alleviated some of Don's nerve pain (though the other nerve symptoms such as tingling & numbness remain.)
His first Ozone Treatment proved to be "very intense" but he's determined to continue with the protocol.
He's getting daily B-12 shots (self-administered) and IV glutathione 2X/week (in office).
He already received his first injection of the Low Dose Immunotherapy protocol.
He's taking oregano essential oil to break down the Lyme bacteria biofilm.
His blood work revealed extremely high levels of mold, so treatment is being added to address that issue.

Don really likes his doctor and all the office staff. They're very attentive and positive and he's feeling deeply grateful to be getting such expert care. He said to say thank you to each and every one of you... again!

Anna & Bo and I are all so relieved that he's getting this care, so we also want to thank you again... and again and again! I hope you are all enjoying the renewal of Spring.

Love, Kim
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Dear Friends, I want you all to know that our campaign has been fully funded. If you haven't heard already, a beloved ex-boyfriend paid off the entire balance. Details are on my Fb page!

Now, here's the Incentive Form link: https://goo.gl/forms/GMlExByfoz21H6oa2

All the incentives were donated by the artists (stickers, mugs, and the skull that will be raffled off.) So, if you'd like to claim the incentive(s) you qualify for, you won't take any money from Don.

This has been a truly amazing campaign thanks to each and every one of you. May all your dreams come true, Kim
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$43,900 of $40,000 goal

Raised by 169 people in 3 months
Created February 20, 2019
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