Struggling to cover the financial impact of Lyme disease? This week on the Heal Podcast, Jessica Snajder talked to us about her foundation Partner in Lyme and how her family’s personal battle with Lyme inspired her to find a way to help others alleviate the financial burden that comes with fighting chronic Lyme.
The charity works to donate money to individuals who might not be able to keep up with their cost of living and Lyme disease treatment. Partners In Lyme has grown in the midst of a hard year and helps people who need help and hope.
To watch the video, click here.
Mimi: Jessica, thank you so much for coming on today. I would love to start by talking about how you got involved with Lyme and the personal connection.
Jessica: Sure. Thanks for having me. I came to Lyme, not unlike so many other people through my family member. My daughter, Grace, was diagnosed two years ago after a two-year battle to determine what was causing all these health problems. We bounced from doctor to doctor to doctor and finally uncovered that it was Lyme. And so, she’s still in the process of her healing. And through her healing journey, we were led to found a nonprofit to help other people in similar situations.
Mimi: That’s great. And so, can you tell us a bit about your non-for-profit?
Jessica: Sure. It’s Partner In Lyme, and we just celebrated our first anniversary in January. So growing a new nonprofit in the middle of the pandemic was an exciting experience. Still, it was great because so many people were in need, different need to afford medical treatments, and have goods and services and treatment options available to them that they didn’t have extra disposable money for. So we were able to help 11 people so far. We give $1,000 of financial assistance to residents of Connecticut who are in treatment for Lyme disease and need help with the financial impact.
Mimi: That’s great. And now, if someone’s interested in applying, is it just one time a year, or is it ongoing? How do they use it?
Jessica: We’re so small; we want to keep it personal. So we do rolling. So as our applications come in, we can process it timely and turn that money back over to them, so whatever it is that they’re waiting on, they can afford it quickly. We let them spend the money on anything that helps them heal in body, mind, and spirit. So usually, they’ve been putting off purchasing something or ordering a particular blood test that would give them more information or scheduling specific treatments. Because again, we all know how expensive Lyme disease is. Having that money quickly is a blessing. So we try to get it to them as soon as possible. It’s usually administered about a week to two weeks after we received a complete application.
Mimi: That’s great. And so you don’t dictate where they’re putting the money towards? You left it up to them to decide.
Jessica: As long as it falls under the umbrella of health and wellness and is specific for their Lyme treatment, we give them the discretion to put it towards what they feel they need best.
Mimi: That’s great. Now, how have you been getting donations to your charity?
Jessica: We have just a great base of supporters. And we have people that know of my family’s journey, know of Grace, know of her story, and have felt compelled to support us and her through this. Last year, she participated in the Front Steps Project, a national movement that went international. Photographers went around to people in the pandemic who were quarantining in March, April, May and took front steps pictures of families. And so, she was able to do that. And she was one of our largest donors last year. People had their photos taken, and instead of paying the photographer, they donated the money to Partner In Lyme.
Mimi: Who was the photographer that did that?
Jessica: My daughter. Well, she didn’t found it. I don’t know who the founder was. It was a Boston-based photographer. And as news of this project spread, it spread throughout the nation and then even into parts of Europe. And I’m not exactly sure where else it applied to. But yeah, photographers just did this out of the generosity of their hearts. And then, instead of taking payment, they asked the families to support whatever nonprofit that photographer was supporting. And in Grace’s situation, she helped Partner In Lyme.
Mimi: That’s fabulous. That’s fabulous. Can you talk a bit about her journey? As far as what has she been doing to try to get better and different modalities, if she’s gone the traditional route or what’s worked for her?
Jessica: When she came to her diagnosis, she was just 18. And we were new to Lyme disease. And at the time, we felt it would be best to do more of an integrative approach. So we did the antibiotics, we also did herbs and supplements, and we looked at ways to support her body holistically, just as she was going through this process. Unfortunately for her, the antibiotics didn’t work. They just made her very, very sick.
She got to the point where she said, “I just wanted to take a break from all of this.” She took a couple of months off and just focused utterly on healing her gut and getting her body strong again. And then took a different approach, and she decided to do an all herbal-based treatment protocol. Thankfully that’s really what her body responds to best. She’s been on that for about the past six months and is moving towards healing. I mean, she still has a way to go, but she’s so much better than where she was this time last year. We support her with essential oils and chiropractic treatment, physical therapy, halotherapy, nutritional therapy. We look at her whole body; what does her body need to get strong and fight this?
Mimi: Is she in school right now, or is she just trying to get better at home?
Jessica: At the beginning of her diagnosis, she was in college. She was an art major specializing in photography. And it was very, very hard for her. As she began treatment and got sicker than she already was, I was able to help her. I would drive her to school and home. She was commuting, so that was fortunate, but then it got to the point where it was too much for her, and then COVID hit, and she could not do school online because of the brain fog and the cognitive issues.
Reading has always been a problem. It causes her to have migraines. So online learning wasn’t an option. In-person, she can’t mask for very long because that causes migraines. So she decided to take a break and focus entirely on her photography business. And last year, that business took off, and she got into the area of small intimate weddings. And that just opened up a whole new avenue for her. So she’s had a successful year professionally and is taking a break from her education traditionally right now.
Mimi: That’s great. That’s wonderful. I’m so happy to hear that. Yeah. And so, it’s interesting about; I did a blog article last week about different charities that people could go to, to turn to, to get financial assistance. There are not many of them out there. I came up with, I think, less than 10 or 12. It’s interesting because it is such a financial burden for Lyme patients. It’s exciting. I mean, do you have any insight as to, I don’t know the answer, but I love your opinion, of like why? It’s incredible how it’s just not covered by insurance. And I don’t know as you’ve dove into and created this charity if you’ve had any insight as to why this is happening.
"When you get diagnosed with other diseases, you have this team of people that rally around you. They have walked in your honor, and people put on t-shirts and really lift you emotionally and financially. And that doesn't happen with Lyme disease. "
Jessica: I strongly recommend watching the documentary Under Our Skin. It gives you a real good solid backstory to answer that question. It comes down to many politics surrounding this disease, which is really unsurroundinguse I don’t see it in teases. When you get diagnosed with other diseases, you have this team of people that rally around you. They have walked in your honor, and people put on t-shirts and lift you emotionally and financially. I think it’s because the CDC refuses to accept chronic Lyme disease as an official diagnosis. They’re calling it Post Lyme Treatment Syndrome.
Lyme patients are forced to bear the financial impact of the illness. And unfortunately, Lyme doctors, Lyme literate medical doctors, those people who will step outside that boundary that the CDC has set saying that Lyme disease is something that is cured with two weeks of antibiotics.
Jessica: We know that that might be the case if you catch the tick on you and you pluck it off, and you test it, and you get that two weeks of antibiotics. Hopefully, you will be okay.
If you’ve had Lyme disease for a while, and it’s gone systemic in your body, two weeks of antibiotics isn’t going to do anything. So for a doctor to treat you according to your body needs, they have to step outside of that boundary that the CDC has set, and they won’t take insurance. We have to self-fund it. And the average Lyme patient can pay up to $50,000 a year out of pocket to finance their treatment. And for some people, that’s just not… It’s not possible. So many people are left untreated and getting sicker because they can’t afford even to begin to finance their treatment.
Mimi: Yeah. It’s heartbreaking to see that it’s not being covered, and it’s just… Especially cause of the fact that it’s not recognized and other diseases have like what we’re going through now, they realize those long haulers. It’s like, why are they recognizing those but not what we’re going through? So it’s frustrating. And for anybody who’s listening, who doesn’t live in Connecticut, do you have any other organizations that you’ve kind of know about or chat with that maybe they can look for funding if they’re not a Connecticut resident?
Jessica: On our website partnerinlyme.org, I have a resource section where I’m compiling information. Books that people recommend that you read places can get your tick tested if you find one on yourself or your child, organizations, charities, foundations that will provide funding. I have researched what other organizations are out there, and I provided links.
So if you’re not a resident of Connecticut, I want you also to be able to come to us for resources, and I will help you find something that is in your area that you might qualify for financial impact assistance. We also have some Zoom support groups and prayer groups, and book studies. That’s available to everyone, knowing that the financial impact is universal and not location-specific.
Mimi: Right. I love Chronic Book. I just finished that. I just interviewed Dana as well for the podcast. And it was a great book because I felt like it dove into the politics that’s not talked a lot about Lyme. So it’s been interesting. Is there anything else that we haven’t covered about your organization or Lyme or treatments you think my listener’s treatments?
Jessica: The one thing that’s weighed on my heart this past year with everything we’ve just had to walk through as a country is how much we need each other. When it comes to Lyme disease in particular, so many people who are either in treatment or waiting to get treatment have a sense of almost hopelessness sometimes when it comes to this disease, and I encourage people listening to this to reach out to somebody if they feel like they’re in a place where this journey is just really hard, or this illness is just too overwhelming, or it’s breaking up a family or causing stress on a marriage. We know that money is the number one stress and it’s the cause of most divorces. When we talk about costs involved with Lyme, it’s a snowball effect of stress.
Trying to hold that up yourself and trying to carry that burden alone is just too much. So I encourage people, no matter where you are, to pick up the phone, reach out to somebody, say that you need someone to listen to, and help carry that burden for you. And so that’s just something that’s been weighing on me because we need each other in a way that we maybecauseve realized until this past year has shown us just how interconnected we all are. Revealed know of somebody in your family who has Lyme disease, reach out to them, check in on them and ask them how you can help. Because even if they’re not asking for help, there are ways that you can help support them in this illness.
Mimi: Right. No, it’s true. And I think having gone through it; I realized like once I started feeling better, I said to my husband, “You realize when you’re down and out…” I mean, because he was leaving on me to find my cure and my treatment. And it’s just like to expect someone when they don’t feel well to do the research, and even make that phone call to a doctor’s appointment is just monumental. It’s like climbing a mountain because when you don’t feel well, the last thing you want to do is fill out the paperwork and start a whole new protocol with a real new doctor. I think you’re correct to say, if you’re listening and you are struggling right now, get somebody else to be your advocate and do your research.
Mimi: I don’t know; when I was that way, I couldn’t even read. The thought of reading and researching. And even if I was reading, I don’t remember what I was reading the chapter before. To have that support of someone just being like, “That makes sense. That doesn’t make sense.” Trust even in your intuition.
Jessica: Absolutely. I can’t imagine having to walk through this alone because what people don’t realize is when you go to these Lyme appointments, they’re not like your traditional doctor appointments with your primary care, where you’re in and out in 15 minutes. You usually walk out with a prescription, and you fill it, and then ten days later, you’re hopefully good to go. These Lyme appointments can last one to three hours sometimes.
Mimi: Hours. Yeah.
Jessica: Possibly struggling with neurological issues, unable to read and concentrate for very long. And you have to answer these questions and remember from appointment to appointment how your protocol has changed, how your symptoms have changed. You can’t do that. I’ve been able to do that for my daughter. And she’s been open to having me be that support person for her. I mean, my binder is three inches thick with just blood work and notes and symptom checklists and diet plans. If you’re trying to do this, if you don’t have a spouse or someone going with you, encourage them, encourage a friend or someone in your family to be that person for you. Have them be note-takers, or record the doc appointment on your peso that you can go back and reference it because it’s a lot of information to manage when you’re not feeling great.
Mimi: It is a lot. Yeah. There was one person I also interviewed a while back, Daisy White. I don’t know if you’ve ever come across her. She does that. She’s a Lyme advocate, and that’s what she does for people. I mean, from like delivering groceries to like, “Hey, this is your symptoms. This is the type of doctor you should go to, this neurological Lyme doctor. Or it would help if you went this route. If you want to go to the antibiotic route.” So finding that advocate is super important, like you said.
Jessica: It is.
Mimi: That’s a great point. The more we can get the word out there and work with each other, maybe there’ll be some changes in the government and covering of insurance, or a cure, or even some treatments, or even a proper diagnosis and diagnostic tool. But thank you so much for everything that you’re doing for the Lyme community.
Jessica: I hope so. There have been some encouraging signs. I mean, just today, The Cohen Foundation announced that they’re awarding $16 million to Columbia University. And they’re going to start a specialized treatment facility for Lyme. So, that’s great. I do think that there’s an opportunity through COVID. Like you were saying, there are long haulers with COVID, and their symptoms are very similar to the symptoms of chronic Lyme. So as the world opens up to the awareness that not all diseases look the same and not all conditions have a timeline, as that becomes something that’s more accepted, hopefully, the Lyme community will be at the acceptance that we’ve been waiting for for a long time.
Mimi: That’s true. Now, the Colombia investment that they just made is for the Disulfiram program they’re going through, or is that just general for Lyme?
Jessica: No. I think it’s a more rounded approach. So it’s a care treatment facility that will offer all different components of care centered around Lyme disease. And I know that they will have access to experimental treatments. So something like Disulfiram could fall under that.
Mimi: Yeah. Because I know that’s where they’ve been studying there. That’s been their primary focus.
Jessica: Yeah. So this is a significant expansion of that program.
Mimi: That’s great. That’s great. Well, thank you so much. I appreciate it.
Jessica: Thank you for having me. And for anybody who’s listening and wants to either submit or go to the resources, you go to partnerinlyme.org.
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