Please, Help Us Pay for Lyme Treatment for our Son

Hello everyone!  I’d like to begin by saying thanks to everyone who has helped us over the last couple of years.  Friends and generous strangers, you have helped us raise over $12,000 which we have used to pay for medical bills and insurance and I don’t know how we would have gotten through this time without you.  I am forever grateful!  Our immediate need is a service dog for our son to help with mobility issues and for emotional support.  This illness is very isolating and is creating extreme depression and he responds so well to dogs.  Unfortunately, it can cost a lot for a fully trained service dog, between $25,000-$50,000 depending on level of training.  We believe this will help our son when he’s having mobility issues, but also help him want to stay in the fight for his recovery.  If, by the end of 2 months, we haven’t raised enough for a dog, the money will go to medical expenses and insurance payments.

I am updating this campaign because it is being discussed on a podcast by John Alan Reese for his show, “Comin’ Home With John Alan,” ( https://johnalanpod.com/loyal-oak-hands/)The show is based in Norway, but has an international audience, and I wanted to condense the info here to make it easier for those who come to view our campaign,  instead of having to go through all the updates.  I have mixed feelings about the podcast.  First, I am deeply honored and grateful to be included and that there will be a spotlight put on this situation so many Americans find themselves in.  I am also horrified and angry that it needs to happen in the first place, that the United States of America has taken on the status of a third world country where healthcare is concerned and that so many are losing everything in the endeavor to stay alive.  This is us.  We’ve lost a great deal ourselves, from our savings and our retirement to having to move from our home into a much smaller place because we could no longer afford the rent where we had lived for 11 years. We’ve lost our privacy and pride with these campaigns as well, but it’s all worth it if it means we can help our son, Atticus.  Here is our story:

Atticus has autism that wasn’t diagnosed until he was 9.  He’s has mysterious health issues since he was little that we were able to manage with, if not fix. He required a full time caregiver, so I stayed home while my husband worked as a film editor which deeply impacted our income potential.  As a family, we had already spent a great deal out of pocket in trying to treat these before he became too sick to function in 2018. 2018 was a game changer which is deeply unfortunate because it was also the year Atticus graduated high school, began college and was doing so well, he was ready to soar.  Then he got his with a bout of e.Coli food poisoning requiring ER care for unrelenting projectile vomiting.  They treated this with the antibiotic, Cipro, and the e.Coli and the vomiting were cured, but this experience opened to door to lasting problems.  

The nausea never left and he lost 50 pounds in the space of 4 months, coming very close to needing a feeding tube.   His symptoms, then and now, included constant nausea, debilitating headaches, full body pain, dizziness, irregular heartbeat, chronic constipation, fatigue, anxiety, depression, neurological symptoms that look like a stroke: Bell’s Palsy, wandering eyes, slurred speech, stuttering and sudden bouts of weakness in his body causing him to fall down and unable to walk for short periods of time.  Short term memory loss often occurs during these episodes and is not really himself. We took him to a lot of specialists.  The 4th GI specialist we saw, because the others hadn’t helped, went out of the box and began testing for less common pathogens.  After a lot of expensive blood work that was not covered by insurance, he was diagnosed with Lyme Disease, Babesia and Bartonella, all tick borne illnesses which can be gotten with one bite from one tick.  It was theorized that he’d had Lyme disease for most of his life as it explained other mystery symptoms he’d had since early childhood and that the parasites had been in a period of dormancy that was awakened by the antibiotic therapy when they came out in attack mode, awake and angry.  So, we began seeing doctors who specialize in Lyme Disease.

In case you don’t know, Lyme Disease is a very controversial topic in medicine in the USA. The criteria set by the CDC for diagnoses is much too narrow, including too few species.  Many people seek alternative labs that are more comprehensive, expensive and not covered by insurance.  I think our first round of Lyme testing was $1500 out of pocket.  As a result of the CDC guidelines and lack of education on the topic, many doctors here don’t believe chronic Lyme disease exists.  I actually had an ER doc at UCLA tell us that the hospital doesn’t believe in chronic Lyme disease.  So, it is necessary to see specialists.  They cost anywhere from $800-$1500 for the first visit and anywhere from $250-$475 for follow ups.  Many don’t bill insurance so you must pay up front and then get reimbursed by insurance.  Here’s the rub, the insurance company only pays what they think is “usual and customary” and anything above that is your responsibility.  There’s a great deal they don’t cover in general, but especially for Lyme disease because the insurance companies follow the CDC guidelines.  

At first, we tried the fully Western Medicine approach.  We tried attacking it with antibiotics and did a lot of tests, including brain scans, spinal taps, CAT scans, MRI’s and more. He couldn’t tolerate the antibiotics, so we found another specialist who used both Western and alternative healing techniques, but we did learn he had brain inflammation. He began a regimen of anti microbials, supplements and IV Ozone therapy 2 to 3 times a week.  We were spending about $4,000 a month seeing this doctor.  Insurance covered only a small portion of the doctor visits, but we were seeing improvement so we continued for about a year or so.  In that time, there was great improvement in terms of his ability to eat and his neurological symptoms vanished.  He’d gained enough weight to be 136 lbs, gaining 132 pounds. The treatments for Lyme were definitely beneficial.  We decided to take a break from treatment and a few months later, Covid hit and my husband, our sole breadwinner, lost his job as did most people working in the film industry.  We could no longer afford treatment.  

We spent $140,000 on healthcare for him and our family in the first couple of years, having cashed in our retirement to have the necessary funds. I have lost track of how much we have spent since.  It’s been less because we are seeing doctors sparingly due to financial constraints, but his health is declining as a result. He is dropping weight again.  He is getting daily headaches and frequent neurological symptoms.  He has constant nausea and pain.  He has multiple other diagnoses including Postural Orthostatic Tachycardia Syndrome, ankylosing spondylitis, fibromyalgia, anemia, migraines, bile induced gastritis, SIBO, encephalitis and PANS. He has been hospitalized several times. His blood work is always off in one way or another. He needs to be in treatment again.

All of this is a lot and feels pretty unattainable to us given our current circumstances, but I hold a window open for miracles.  We would be homeless now if not for the help of friends this last year. My husband has been unemployed since Covid began in April of 2020.  I am receiving income from the state of California as Atticus’s caregiver which is helping us get by, but is not nearly enough.  What we need more than anything is to help our son heal so that we can return to work and, more importantly,  so he can live to his full potential which is enormous!  He is a gifted composer of music and has an ability to make a career out of it given the chance. He’s also a great performer who wants to advocate for others who have been through similar trials.  His road has been challenging from the beginning and he has come through so much.  His perseverance and courage through all the pain and suffering is inspiring, but I can see that he’s tired now.  It’s becoming harder to bear.  I hope to help him through this part too.  Any help you can offer little or small is appreciated.  Here is a link to Atticus’s music if you’d like to hear or if you have any connections that might help him get a foothold making money with his music:  https://linktr.ee/Atticus.Jackson 

 We would very much like to support ourselves once more.  I am an artist with a large body of work looking for representation.  If you know of anyone that might like to help in that area, that would be amazing.  If you’re interested, you can see Sara’s artwork and photography
here: https://www.prettyzybos.com/digital-artwork You can purchase some of her work here on a variety of items here:  https://www.redbubble.com/people/PrettyZybos/shop?asc=u  You can also follow her instagram: https://www.Instagram.com/prettyzybos

My husband is a film editor looking for work in Los Angeles.   Here is his website:   https://www.cragercouger.com/

Thanks so much for reading this far!  I’m very grateful that this in being featured on John Alan Reese’s podcast.  Thank you for raising awareness about this situation so many American’s find themselves in.  Thank you for the opportunity to be a part of it!  Huge thanks to everyone who has already contributed.   You have my undying love and gratitude!