Mimi:
Welcome to The Heal Podcast, for all things related to Lyme disease and other chronic illnesses. I'm Mimi MacLean, mama of five, founder of Lyme 360 and a Lyme warrior. Tune in each week to hear from doctors, health practitioners and experts, to hear about their treatments, struggles and triumphs to help you on your healing journey. I'm here to heal with you.

Mimi:
Before we get started with the podcast, I wanted to talk to you about what is in your personal care products and cosmetics. What you put on your skin, which is your largest organ, is just as important as what you consume. Your body immediately absorbs what is on the skin, but did you know that there's limited regulation in the personal care industry? And the last law that was passed was 1938. So the chemicals and ingredients in your products have not been tested for human safety.

Mimi:
So for those of you struggling with your health, it is super important to use clean products. Eight years ago, I started using Beautycounter for my cosmetics and personal care products. They are the leaders in clean, safer products that work. Beautycounter has done the research and taken the guesswork out of what is safe. Go to lyme360.com/beautycounter to learn more. Reach out to me at mimi@lyme360.com if you want to learn more or find out what my favorite products are. Welcome back to The Heal Podcast. This is Mimi. And today we have Jessica Snajder, and she is a Lyme activist and founder of Partner In Lyme, along with her daughter. She founded her foundation in response to her family's experience with Lyme. Her daughter was diagnosed after searching for two years and seeing over 10 doctors. Jessica founded Partners In Lyme with the goal of helping people with financial burden of fighting Lyme disease.

Mimi:
The charity works to donate money to individuals who might not be able to keep up with their cost of living and the treatment of Lyme disease. Partners In Lyme has grown in the midst of a hard year and help people who are in need of help and hope. To get my detox for Lyme checklists, go to lyme360.com/detoxchecklist.

Mimi:
Jessica, thank you so much for coming on today. I would love to start out by talking about how you got involved with Lyme and the personal connection that you have.

Jessica Snajder:
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 find out 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 who are in similar situations.

Mimi:
That's great. And so can you tell us a little bit about your non-for-profit?

Jessica Snajder:
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 a really interesting experience, but it was actually really great because so many people were in need, extra need to afford medical treatments, and have goods and services and treatment options available to them that they just 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.

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 apply?

Jessica Snajder:
Because we're so small, we really want to keep it personal. So we do rolling. So as our applications come in, we are able to 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 special blood test that would give them more information or scheduling certain treatments. Because again, we all know how expensive Lyme disease is. So having that money quickly is really a blessing. So we try to get it to them as quickly 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 really dictate where they're putting the money towards? You kind of left it up to them to decide.

Jessica Snajder:
Mm-hmm (affirmative). As long as it falls under the umbrella of health and wellness and is specific for their Lyme treatment, then we give them the discretion to really put it towards what they feel they need best.

Mimi:
That's great. Now, how have you been getting donations to your charity?

Jessica Snajder:
We have just a really 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. She actually participated in the Front Steps Project last year, which was a national movement that I think went international, where 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 picture taken and in lieu of paying the photographer, they donated the money to Partner In Lyme.

Mimi:
Who was the photographer that did that?

Jessica Snajder:
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 spread to. But yeah, photographers just did this out of the generosity of their hearts. And then in lieu of taking payment, they asked the families to support whatever nonprofit that photographer was supporting. And in Grace's situation, she supported Partner In Lyme.

Mimi:
That's fabulous. That's fabulous. Can you talk a little 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 Snajder:
Yeah, we've done a little bit of both. When she came to her diagnosis, she was just 18. And we were really 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 really looked at ways to support her body holistically just as she was going through this process. Unfortunately for her, the antibiotics didn't really work. They just made her very, very sick. She got to the point where she said, "I don't want to do this anymore. I just wanted to take a break from all of this." And she did. She took a couple of months off and just focused completely on healing her gut and getting her body strong again.

Jessica Snajder:
And then we took a different approach and she decided to do an all herbal-based treatment protocol. And thankfully that's really what her body responds to best. So 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. And we support her with essential oils and chiropractic treatment, physical therapy, halo therapy, nutritional therapy. We just kind of look at her whole body, what is her body need to get strong and fight this?

Mimi:
Is she in school right now or is she at home just trying to get better?

Jessica Snajder:
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 then she already was, I was able to help her. I would drive her to school. I would wait for her to do classes. I would drive her home. She was commuting, so that was fortunate. But then it got to the point where it was really too much for her and then COVID hit and she just could not do school online because the brain fog and the cognitive issues. Reading has always been a problem. It causes her to have migraines. So online learning really wasn't an option. And in person, she can't mask for very long because that causes migraines. So she decided to take a break and just focus entirely on her photography business. And last year, that business really 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 really 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's 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 really interesting. I mean, do you have any insight as to, I don't know the answer, but I just love your opinion, of like why? It's amazing 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.

Jessica Snajder:
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 a lot of politics that surrounds this disease, which is really unfortunate, because I don't see it in other diseases. When you get diagnosed with other diseases, you have this team of people that rally around you. They have walks in your honor and people put on t-shirts and really just lift you up emotionally and financially. And that doesn't happen with Lyme disease. And 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. And as such, insurance companies won't cover a syndrome. So we, as Lyme patients, are really forced to finance our own treatment. 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 Snajder:
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. But that's not the case, not even for acute line, but it is not the case for chronic Lyme. If you've had Lyme disease for a while, and it's really gone systemic in your body, two weeks of antibiotics isn't going to do anything. So in order for a doctor to treat you according to what your body needs, they have to step outside of that boundary that the CDC has set and they won't take insurance. And so again, 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 to even begin to finance their treatment.

Mimi:
Yeah. It's heartbreaking to see that it's not being covered and it's just... Especially cause the fact that it's not recognized and there are other diseases that have like what we're going through now, they're recognizing those long haulers. It's like, why are they recognizing those but not what we're going through? So it's definitely 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 touch base with that maybe they can look for funding if they're not a Connecticut resident?

Jessica Snajder:
On our website partnerinlyme.org, I have a resource section where I'm compiling information. Books that people recommend that you read, places that you can get your tick tested if you find one on yourself or your child, and organizations, charities, foundations that will provide funding. So I do have links. Like you, I have been doing some research into 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 absolutely help you find something that is in your area that you might qualify for help.

Jessica Snajder:
And through Partner In Lyme, we realize that although we keep it geographic and we only give financial assistance to residents of Connecticut, we do have programming that we make available to everyone. So we have some Zoom support groups and prayer groups and just book studies. We did the Chronic Book, we had a book discussion based around that. So I try to do programming. That's available to everyone, knowing that the funding really is only available to residents of Connecticut.

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 really 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 either about your organization or about Lyme or about treatments that you think my listeners would love to hear about?

Jessica Snajder:
I think the one thing that's really weighed on my heart this past year with everything that we've just had to walk through as a country is how much we need each other. And I think when it comes to Lyme disease in particular, so many people who are either in treatment or waiting to be able to get treatment, have a sense of almost hopelessness sometimes when it comes to this disease. And I just encourage people that are 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.

Jessica Snajder:
And I think trying to hold that up yourself and trying to carry that burden alone is just too much. So I just really encourage people no matter where you are to just pick up the phone, reach out to somebody, say that you just need someone to just listen to and help carry that burden for you. And so that's just something that's kind of been weighing on me is that we need each other in a way that we may not have realized until this past year has showed us just how interconnected we all are. So if you know of somebody in your family that has Lyme disease, reach out to them and just check in on them and ask them how you can help. Because even if they're not asking for help, there's ways that you can help support them in this illness.

Mimi:
Right. No, it's true. And I think having gone through it, me personally, 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 kind of 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 just 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 whole new doctor. And so, yeah, I think you're right 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. Just to have that support of someone just kind of being like, "That makes sense. That doesn't make sense." Or trust even in your intuition.

Jessica Snajder:
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, and you usually walk out with a prescription and you fill it and then 10 days later, you're hopefully good to go. These Lyme appointments can last one to three hours sometimes.

Mimi:
Hours. Yeah.

Jessica Snajder:
And so you're going into it, like you said, not feeling 100%. 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 really open to having me be that support person for her.

Jessica Snajder:
I mean, my binder is three inches thick with just blood work and notes and symptom checklists and diet plans. It's a lot to maintain. So 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 just to be that person for you. And to go to the appointments with you, to be a note taker, or to just record the doctor appointment on your phone so 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 you should go this route. If you want to go to the antibiotic route." So finding that advocate is super important, like you said.

Jessica Snajder:
It is.

Mimi:
That's a great point. But thank you so much for everything that you're doing for the Lyme community. I think 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.

Jessica Snajder:
I hope so. There's been some encouraging signs. I mean, just today, The Cohen Foundation announced that they're awarding $16 million to Columbia University.

Mimi:
Oh, good.

Jessica Snajder:
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 diseases 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 that for the Disulfiram program that they're going through or is that just general for Lyme?

Jessica Snajder:
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 treatments that are experimental. 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 Snajder:
Yeah. So this is a big expansion on that program.

Mimi:
That's great. That's great. Well, thank you so much. I really appreciate it.

Jessica Snajder:
Thank you for having me.

Mimi:
And for anybody who's listening and wants to either submit or go to the resources, you go to partnerinlyme.org.

Jessica Snajder:
Mm-hmm (affirmative). Correct.

Mimi:
Perfect. Thank you so much.

Jessica Snajder:
Thank you.

Mimi:
Each week I will bring you different voices from the wellness community so that they can share how they help their clients heal. You will come away with tips and strategies to help you get your life back. Thank you so much for coming on and I am so happy you were here. Subscribe now and tune in next week. If you want to learn how I detox and you want to check out my detox for Lyme checklist, go to lyme360.com/detoxchecklist. You can also join our community at Lyme 360 Warriors on Facebook and let's heal together. Thank you.