Alix is a 50-year old mother of two teenagers. She was diagnosed with later stage Lyme disease at the age of 42. Alix graduated from a top business school and then began a high-powered career at Apple. She knew something was wrong when she could no longer understand what she was reading in the Wall Street Journal. She admits to knowing nothing about Lyme disease in 1991 when she discovered a rash on her leg. She dismissed it as an allergy from grass. It wasn’t until she had to get a number of vaccines to travel that her health took a severe downward spiral. She took a leave of absence from work and went in search of answers to all her medical issues. She talks about dealing with the doubters, even her father asked her to be seen by a top psychiatrist at the University of Chicago, who said her depressive symptoms were secondary to her physical health issues. Alix talks about horrific, constant migraines, brain fog and finally Bell’s Palsy that led to her seeking out a doctor that diagnosed her with Lyme disease and a number of co-infections. Her journey with Lyme had a significant impact on her married life, leading to divorce (not uncommon in this disease state) and her financial standing, as she ultimately lost her house due to the costs of treatment, most of which are not covered by insurance. Today, Alix is about 80% recovered and faced with the decision to go backwards to step forwards. Such is the case for many Lyme patients.
I'm Alix and I'm 50 years old. I was first diagnosed with Lyme disease when I was 42. Life before 42 included young twins, I have a boy and a girl who are twins, and I was married, I'm not married anymore. Lyme disease will do that, it'll break up marriages. Not that that was our only problem. I had an MBA from a top school, I was running a worldwide research group at Apple, and I got really really sick in 1996 when I was about 30 years old and it got progressively worse over the course of six months. I lost the ability to read and understand and remember and so I was doing what every MBA loved to do which is read the Wall Street Journal every day before you go to work and I was reading an article, and I thought, oh my gosh, this is the worst writer I've ever read, I can't understand the article at all. The commonality was me and I was unable to understand anything I was reading anymore. And so that was the day, um, I went in and I took a medical leave of absence at the long-time urging of my friends, my family, my doctor, everyone around me knew I was really really sick and so I finally had to do it when I couldn't use my brain anymore. I had a bullseye rash in about 1991 and it developed underneath my hiking sock, so I literally pulled down my hiking sock and I saw this raised pink rash, and it had a clearing, it was, kind of looked blotchy to me. But at the time I had never even heard of Lyme disease. Very few people had heard of Lyme disease in the early 1990s and I thought I was just allergic to some grass that had gotten underneath my hiking sock and so even though that summer I had classic symptoms, I ran a summer flu, I started to have digestive problems, I had no idea I had Lyme disease. I thought I had gotten, like, giardia or something. And it wasn't until I got six travel vaccines that I just slid out and became disabled. As the symptoms started to present themselves I thought I had allergies. I mean, I really wanted to blame it on the environment and everything around me because I just didn't know what was going on, if I [of course?] started to see lots of different doctors, starting with an allergist, got no answers there. The eye doctor actually laughed at me and called me the pink eye girl, which made me really upset that he just dismissed me.
My dad thought I, you know, was, like, [LAUGH] had a psychological issue, and so he sent me to his friend who's the head of psychiatry at University of Chicago and he basically said that I was perfectly normal and that any kind of depressive symptoms I had were secondary to being physically ill. I was like, yes, my certificate of normalcy is right here, I was happy with that. My family members thought that I was probably overworked and stressed out and I would just look at them and say listen, I graduated with 400 other people from Kellogg at Northwestern, and why aren't the rest of them sick? Half of us were women and why am I the only one? The symptoms started to pile on at that time and it started with feeling like I had a headache and was really sleepy. Extremely sleepy like sleeping 12 to 16 hours a day and still not feeling rested, that headache turned into a migraine headache with nausea 24/7. I had joint pain, I had digestive problems, and so I ended up at a doctor who diagnosed me with Lyme disease, because he decided to run a Lyme disease panel for the first time ever. And this was, you know, 18 years after my tick bite and bullseye rash. I tested positive but I was not CDC positive and I thought, hm, what's the treatment for that? And he said, well, it's two or three years of antibiotics. And so I said, hm, um, I've been on a lot of drugs already and I don't like the treatment so I don't have Lyme disease. [LAUGH]
And I just decided I didn't have it. So for another two years I went untreated and then what happened was really interesting. I'd been in what we call Lyme denial for two years and I got Bells palsy in my face. So the left side of my face was sagging, the left side eyebrow was sagging, my eye was sagging, I couldn't really smile fully on the left side. And I started freaking out because in the midst of everything else I was dealing with, Bells palsy was just frightening. Frightening, it was like, an outward sign that I was sick. After I got Bells palsy in my face I decided to see a few of the Lyme disease doctors in the area and I ended up going with one who, ironically, is known for being the one who gives you just a boatload of antibiotics, but he was willing to treat me with herbs, which was very acceptable to me. And lo and behold I started on the herbal protocol for Lyme disease with this doctor and in six weeks I had another bullseye rash. It's called a secondary bullseye rash, or a treatment rash, and it came out on my arm. It was very large, and I have a picture of it. By definition I was diagnosed with chronic Lyme disease.
I was not aware of coinfections w-the first time I was diagnosed but when I got out of the Lyme denial, which as I said lasted two years, I was aware of coinfections and for some reason that was one of the reasons why I was able to accept that I had Lyme disease also, because I'd also tested positive for having babesia and ehrlichia. And to get there I first did herbal antibiotics, and then I did oxygen healing therapy so, like, ozone and UVBI, which were very, very successful. Ozone involves taking out some of your blood, and ozonating it with ozone gas, and then putting it back into you and it's an amazing treatment because, it's antiviral, it's antibiotic, it's antifungal, antiparasitic, and what people don't realize when they have Lyme disease, they think it's a bacteria, it's a bacteria, it's a bacteria, it's not. It is an immune system failure and you have everything going on. You've got overgrowth of viruses, of bacteria, of fungus, and of parasites so if you're just trying to hit it with antibiotics you're missing 75 percent of what's going on. And so when I discovered oxygen healing treatments, they're broad spectrum and they were able to hit everything that was going on at the same time and they're amazing treatments because typically they don't make you feel so bad afterwards. Most Lyme treatments will give you what's called a Herxheimer reaction, where you feel bad, but most oxygen healing therapies for some reason, we just feel better typically when we leave the IV room. Detoxification is really important when you're treating Lyme disease because you have a buildup of heavy metals because you can't eliminate them as well as other people, you have bacteria that you're killing and they leave debris that you've got to get out of your body, you've got viruses that you're killing, you've got to get that debris out and so detox protocols are really, really important in Lyme disease because you're going to overwhelm your organs, you're going to feel really, really, really sick when you're treating otherwise and so if you're detoxing and getting everything out as you're treating you'll feel a lot better. You can take some stuff to make your organs work better, you can take things called binders that will bind to these little pieces of dead bacteria and you can do things to just get things out, like you can buy an infrared sauna and sit in that and your skin is an amazing detoxification organ, when you're sweating and so sitting in an infrared sauna for 30 minutes is really helpful for detox.
Another, uh, detox strategy is to do ionic foot baths. They sound stupid and crazy but now, like, some people have been, actually, measuring what comes out of you, not only in the water in the foot bath but out of you for the next like three to seven days, and people are dumping aluminum and mercury and all kinds of stuff that you had no idea you had in you at very high levels, like, better than any of the drugs people use to get metals out. It's really important in Lyme disease that you find one Lyme literate medical doctor to be the hub of your wheel and you can get complementary treatments from other doctors, naturopaths, chiropractors, pain specialists, everybody else, on the spokes, but you always come back to the hub to your Lyme literate medical doctor and report on what's going on with those other doctors, and a really good Lyme literate medical doctor will encourage you to do that because they know they can't offer you everything but you pretty much need everything if you have Lyme. The mental and emotional aspects of having Lyme disease are almost worse than being so physically ill. I mean, you are so physically ill that you are disabled, you've lost your career, you've lost everything, you lost the ability to make money, you lost the ability to live where you want to live, do what you want to do, eat what you want to eat, dress how you want to dress, you've lost everything but the worst part isn't all that, it's actually how people treat you. And the assumptions they make about you, if I do end up writing a book about this journey it's going to be called lazy and crazy. Because that's what people assume when you haven't worked for so long and there's no diagnosis. And it gets worse when you start treating because you're doing unconventional treatments, even if you're doing antibiotics you start to get criticized when your antibiotic treatment goes on for six months or a year or years in a lot of cases, and those of us who can't use antibiotics for various reasons, then we start doing other treatments and my advice to people is don't tell anyone what those are because they're going to judge you more. They don't need to know, they won't understand. And it just makes it worse for you.
I've met some of my best friends who have Lyme disease or other chronic illness in IV rooms and instead of telling people that we met in an IV room we say we met pole dancing because it sounds a lot more sexy than an IV room. [LAUGH] But we were around poles, just not the kind that you think of. But they are the gold, they are your golden ticket to your social support, everything you need that the other people aren't giving you, are the people going through it just like you are. So my expectations for myself kind of all in two categories. One is you know, gosh, I should still be running a major group at a high tech company, and the other one is you know, gosh, you know, I should be feeling a lot better than I do or the expectation that doing a certain treatment is not going to make me feel as bad as all the other ones have. So the expectation of having to... to adjust my work schedule and not be the career person I thought I was going to be still weighs on me really heavily every day. I meet people who I think are kind of in a parallel world to mine where, you know, they didn't get sick and they started at this company or that company and they're doing really well and all I can see is myself in them and say, that's where I would have been. That is Alix's parallel path and I can never stop beating myself up for that. I've managed to turn lemons into lemonade, I'm a health consultant and medical researcher, which I love doing and I really can't think of anything else I'd rather do right now but I still beat myself up about not having that big career that I trained for and was so excited to have. In terms of expectations about treatment and where I'm going to get treatment wise I'm at 80 percent recovery, it's a very managed recovery meaning I need, like, my healing tools available and around me to keep up with, at that 80 percent. And I have an expectation still that I'll still get to 100 percent. And so I'm willing to try new treatments still to get to 100 percent. However, whenever I try a new treatment instead of being at 80 percent when I'm not treating, when I try a new treatment I can slip down to like 60 or 70 percent in order to try to get to the 100 percent, so it's always this conversation I have with myself, am I ready to take a hit to maybe get to 100 percent? The treatment roller coaster is the biggest roller coaster in the world.
So the cost of Lyme disease personally has been astronomical. It's one of the things that led to my divorce, it has cost me 50,000 dollars a year on average since 1996 so it's been 20 years and it means I can't afford to buy a house in the town where my kids go to school, it is the most expensive disease to have, it's multi-systemic, it lasts a long time and the treatments are not covered by insurance. And even if you choose to do, uh, a conventional route, which is antibiotics insurance companies won't pay for your antibiotics past a month and those bills can be in the thousands of dollars if you're getting IV antibiotics, which is sometimes the only way forward for someone with a severe case of neurological Lyme disease. What is also a problem is that if you go to a naturopath who has amazing remedies that help most of us much more than antibiotics, none of it's covered. Absolutely none of it, every herb you buy you pay for 100 percent out of pocket, every appointment you have with the naturopath, one hundred percent paid for out of pocket. You get no help at all, but for most of us that's the only way forward and I'm not willing to not spend the money. I need to spend the money to get there, I think I can get better and that's what you have to go on but if you realize that this journey is going to be so expensive it could bankrupt you, you would start where most people finish. You would start where people finish when they run out of money. You would start with the cheapest treatments that are highly effective but highly controversial.
When I first got sick I couldn't lift my arms long enough to take a shower to wash my hair. Being misunderstood by your colleagues and your peers and your family is horrible. Lyme disease will make you horribly physically ill to the point that most people are disabled, you will lose your friends, you will lose your family, and a lot of people get really angry and I'm really angry. I'm so angry I want to cry and the way I've dealt with that is to find my own support group of people I met in waiting rooms and IV rooms. Lyme first disabled me in 1997 and I ended up giving birth to twins in 2002 and I was neither diagnosed nor recovered at that time and I got a lot worse during pregnancy. So it was really really hard not to just have one baby but to have two babies, my mom came in to help, she died when the twins were four and a half months old. That was very hard. [LAUGH]
Being sick and losing your mom and having twins all in the same year was very very hard. Raising kids with Lyme disease has been really hard because I've tried to hide it from them as much as possible, you really don't want your kids to grow up with a mom who they think is sick and who they need to worry about all the time. I just didn't want them to worry. The kids see through it. I mean, they knew, I mean, [LAUGH] mom's at home with an IV in her arm, or mom's giving herself injections or you know, mom's on the bathroom floor moaning again. They know. They know something's wrong but I tried to hide it as much as I could. My daughter really seems to get it, she's had some health issues herself but she's totally healthy now, she tested positive for Lyme disease, which she got from me in utero, but she never had to be treated and just by keeping her on a healthy diet and other things that I do for her, she is completely healthy and normal and enjoying life like any normal high school kid would.
My kids are 15 now. Her twin brother is great, he's doing well, he doesn't seem to have any signs of Lyme disease or anything else and they're both healthy and thriving in high school and for anyone just starting out their journey in Lyme disease, find a peer group, find a doctor you trust who's willing to work with other doctors, and use that person as the hub of your network, and make sure that you have a way to continue to make money while you go through this because you can't run out of money before you get better. Any way you can to make money, do social media for somebody, if you can make your house or a room into an Airbnb do that, do writing for someone, do anything you can, if it's a craft, do that, anything you can to make money because you're going to need it for your treatment and if you think, if you lost your job, and you don't know that you're entitled to disability, get on that right away, you're going to need that money, that's your treatment money, your treatment money is from disability if you can get it. In my journey with Lyme disease I went from 80 percent housebound to now 80 percent recovered and that took a lot of work and it is worth it because you can get there. And with the right team and the right support group around you, you can get there.