Rich is a 59-year old married father of a daughter, Rachel. At the age of nine years old his daughter came home after a night of camping with friends and started yelling that there was something on her. Rich got out a magnifying glass and found a nymph tick and properly removed it. They immediately took her to the doctor who said if she doesn’t get a bull’s eye rash that she was fine. A year later Rachel developed severe OCD and five after that she began to demonstrate significant fatigue. Prior to this Rachel was a very active child, played soccer, ran cross-country and then hit a wall and even more surprisingly started to flunk tests at school after being a straight-A student. She was diagnosed with sleep apnea and then a neurologist said that she was suffering from stress. Rachel said, “I know what stress is and this is not stress.” Rich talks about the controversy of Lyme and how frustrating it is for people that are suffering with symptoms that are real. In Rachel’s case, she tested positive for Lyme and three co-infections. Her symptoms became so severe that she had to take a year off from school, something that was very difficult for her parents to witness as they saw her falling behind from her friends. Rich talks about how difficult it was for his daughter socially. Today, Rachel has graduated from high school and is heading off to college, but Rich emphasizes that this will be a huge test for his daughter’s health.
Hi, my name's Rich and 59 years old. I grew up in a little town in Pennsylvania. Been a tech guy my whole career. Got married and then 10 years later had our daughter Rachel and, uh, Rachel's now 20, um, and she's our only... only child. I knew about Lyme disease. I knew you could get it from a tick and in fact my daughter was nine years old she was out camping with some friends and she came back and was taking a bath or a shower and started yelling, you know, mom, mom, there's something on me. And we got a magnifying glass out and found it was a little tick, they're so small they're hard to see. You have to be careful how you remove them. There's a lot of bad information about how to remove them, like using a match and trying to burn them off. You do it with a pair of very sharp tweezers and you grab it right where it's attached to the skin and then you pull it out from there. 'Cause if you pull the head off it'll actually release more of the poisons into you if it is a contaminated tick. So, we took her to doctor and the doctor said if she doesn't get a bull’s eye rash and a fever don't worry about it. So, we kind of put that out of our mind. Um, she never got the bull’s eye rash and fever. And about a year later she got very severe, uh, O-C-D and, uh, we never ever connected the two. They don't really know what directly causes it. They've been looking for some genetic factors and there seems to be some.
There has recently been something discovered called PANS which are-stands for something like pediatric autoimmune neurological syndrome, um, which is an autoimmune response to a bacteria, was first discovered with kids who got strep throat and got O-C-D right afterwards. Well-about five years later she started having some other symptoms. Her O-C-D doctor had been saying there's something else here that's not O-C-D. And then all of a sudden my daughter started having just incredible fatigue. She was sleeping 14, 16 hours a day, just had no energy. And this is a girl whose friends used to call her the Energizer Bunny because she was so energetic. She was always the person who was pushing go, go, go, go, go, go, very athletic, played soccer, ran on cross country team. For her to just sort of hit the wall like this was shocking and she started flunking tests and this was also a straight A student. And she was making just dumb little mistakes. And we, you know, we talked to her-her teachers and the teachers would say, you know, she understands the material 'cause we know from her questions and discussion in class. And she would make dumb little adding and subtracting errors on math for example but yet she clearly understood the hard parts of it. We initially put Lyme out of mind. Everybody said well you have joint problems with Lyme disease.
And she never had the problems in her joints. When we took her to her regular doctor who did blood tests and the usual stuff and nothing really showed up. You look for anemia for example because of her fatigue and her iron levels were good and they found she did have mild sleep apnea. They didn't think that the symptoms would be sever as they were giving the amount of sleep apnea but we put her on a CPAP machine just like old men tend to use, and did nothing to help her at all. We had a lot of exploration to what was going on and 'causing all these symptoms. And one of the more frustrating experiences was we had a, uh, a brain scan done, an M-R-I of her brain to see if there was some encephalitis, some swelling of the brain. She would have panic attacks and seizures and so we were worried about encephalitis or something 'causing the seizures. The nur-nur-pediatric neurologist said, you know, this is just stress, you know, and that just infuriated all of us particular my daughter. She says this is not stress, I know what stress is, and this is not stress. To have a 15 year old girl being told by a top pediatric neurologist that, you know, she's crazy and needs to see a shrink is disheartening. I mean she was furious coming out of that meeting as you can imagine because she's just not getting any help and she feels awful. Lyme testing was not in the agenda at all until I think it was my wife actually heard from some friends that, you know, maybe you should check Lyme even though we had dismissed it early on because of the lack of joint problems.
But the other symptoms were so consistent with Lyme disease that neurological responses and the fatigue. So, we had her tested for-for Lyme, the western blot and the ELISA test and the-the problem with these things is there statistically tests that measure antibodies in your system. They're not a proof positive of whether you have it or not. For example the C-D-C's bar for saying you have Lyme disease is very high and I think she was like ant-antibody short of meeting the C-D-C's definition of having Lyme but giving the rest of her symptoms, giving her history of-of we knew she was bit by a tick. Um, the pretty much said, yeah she-she has Lyme disease. It's very, uh, heartbreaking when you find out that you're only child has Lyme disease because there's no cure for it. And the fact that it's not an absolute positive diagnosis is also very difficult because you want certainty with your kid, right. I mean when my wife had breast cancer they went in, they did biopsy, they D-N-A typed it, and we knew everything about her particular breast cancer. We caught it early and you just had this confidence that you knew she was going to be okay. With Lyme you think she has it but you're not absolutely positive. It's quote controversial, a lot of frustration, and uncertainty around what does this mean for her life.
The controversy is very frustrating because when you're suffering with symptoms they're real [LAUGH] and you-you know you can call it whatever you want. One of the things I think that's also frustrating about Lyme, we use the term Lyme disease to actually mean more than one thing. Technically speaking Lyme is a specific borrelia bacteria but we use Lyme disease to mean all the tick borne diseases. And the last time I talked to somebody from the C-D-C I think they said there were 14 known bacteria viruses transmitted by a tick. In my daughters case she was shown to have four different infections and, so that made it even more frustrating because now you're not just treating one thing, you're treating more than one thing. So, my daughters symptoms were sever enough that we decided that she wasn't ready to go back to school, so she sat a year of high school to be treated. So, she was taking antibiotics and they started her off with one and then they add two and that's when her, uh, digestive system got tanked despite the pro-biotics. In addition to that she was on an IV treatment that was basically minerals and vitamins and things like that to help boost her immune system because she had the neurological aspects of the disease the belief was that the bacteria had gotten into her brain. Antibiotics are large molecules that don't pass through the blood brain barriers, so it's very hard to kill Lyme once it does get into your brain.
And, you know, a lot of this stuff wasn't proven, so it's experimental and you try this, and try that, and insurance companies don't cover most of it because it is experimental. From the antibiotics we did see progress and after a year she was able to finish high school. It took her five years to get through rather than four. Very hard on her, you know, to see all her friends move ahead and for her to sort of fall behind a class. The-one of the first things you do is learn everything you can about Lyme disease, you go out and buy all the books that have ever been written and then you read them cover to cover two or three times. And the question with Lyme because there's no proven way to-to resolve this illness is, you know, which ones are wacky and which ones actually have some potential. And so we've even done some wacky things, you know, I hate to say that but sometimes you experiment with things because it can't hurt her. It might only be able to help her. You know, things like a-a Rife machine which is electronic current that is supposed to stimulate the immune system. The electrical system of the human body is not really well understood. Whether this works or not I don't know but we've tried it.
I'm an engineer by back ground and I'm used to sort of controlling variables and you change one thing at a time. But when it's your health you don't have the time to do that. And so, you kind of throw everything at it, so it's hard to know what one thing made her better or 'cause a flair up in symptoms. You know, it's difficult when there's so much uncertainty around it and when she's feeling bad, kids having a panic attack or anxiety attack in the middle of the night that keeps everybody up and it's af-f-fected my wife and my lives, it's affected, you know, my career, but it's a choice we make as, you know, she didn't ask for this disease, it's a horrible disease, and you do what you have to do. We love her to death and-and we'll make every sacrifice we need to for her. Chronic fatigue's been one of the more difficult ones and-and that sort of combined with the brain fog she would come home from high school and take a three hour nap because she was just exhausted. And then she'd be up half the night doing homework. It does disrupt your sleep cycle entirely, so you know day and night sort of merge all into each other, it really messes up your circadian rhythms and despite taking melatonin and things like that to try to get back on a normal scheduled it just hasn't really worked. And the schools have been great at supporting her, uh, give her a schedule where she didn't have really early classes because mornings a very difficult for her because she does tend to be up a lot of the night.
We've heard others horror stories of schools that didn't understand the fatigue, wouldn't give flexibility in schedules and other things like that which on top of all the suffering must be unbearable. And managing expectations is one of the more difficult things. You want to have hope that you'll be normal someday, that you'll be cured, yet it doesn't always happen and Lymes just not well understood. Whether it goes into remission or whether you're actually cured I don't think anyone really knows. We're hopeful people, you know, just keep praying that she gets better and can lead a normal life. And she has gotten better, she's finished high school and expects to go to college in the fall. The financial burden is huge. We're fortunate that-that we're in a position that we can make the payments but the insurance companies don't cover much of it. They cover antibiotics and prescription drugs but a lot of this is herbal types of things to support your immune system. You know chiropractic visits are usually limited, and nutritionists are not usually covered, so there's a lot of expenses that are not covered by insurance. And we max out the deductibles every year. I don't know how some people do it to be honest.
Now the social impact has been difficult because for my wife and I in particular and more so even my wife. She's basically s-staying home and taking home of our daughter. We're trying to give our daughter as much of a life as we can and, so we do a lot of the things for her that a normal kid of her age would do for themselves because we want her to, uh, use her energy to work on her health and to have a little bit of fun with her friends when she can. I mean she took the years off of high school one of the things that just touches my heart is her friend said, you know, if you think this is going to break up our friendship you're wrong, we're coming after you if you don't come after us. So, her friends have been just great in staying in touch and even when they've moved away and gone to college and she fell behind and was still in high school. Whenever they're home they're with her and the beauty of the social media now is there skyping and texting each other all the time. That's been a real God send to us. She has felt bad a lot of this last year but she has gotten significantly better and wants to make that leap this year and-and move away to college. But it's a very anxious time for all of us particularly for her.
Because we have been here for her moving half way across the country and being in a university where you're on your own is a challenge. The school has been great. They've given her a single dorm room where she doesn't have to worry about roommates waking her up and she can sleep on her schedule. And they have her in a suite where they share a bathroom but the other girls, two of them also have health problems. And in fact the other-one of them is also on a gluten free diet which will help, they can share some of the food that they have to eat. No, I think those type of things help a lot to give her some encouragement that other people have issues to deal with as well. I think you have to be driven to kind of get through this. But you know there is light at the end of the tunnel, there is a reason to keep pushing on. We're hopeful that she starts college and everything works out. We would hope that over the next few years she continues to get better and better to the point where she doesn't think of herself as having Lyme.
There are people who seem to be in remission and don't feel like they're living with Lyme disease every day. Well our big desire in life is for her to go on and-and lead a normal life and have the experiences that other college kids have. You know, we want her to date and go to parties and have fun like other kids do. But that hasn't been in the cards so far but hopefully in the future. One of the more encouraging things that we found was that-was a video made by the, uh, Lyme Light Foundation, uh, of a skier, my daughter, uh, our whole family loves to ski but my daughter in particular and a woman was, uh, a professional skier got Lyme disease. I think she was in bed for two or three years but came back and made the finals of the Sochi Olympics. So, that's an inspiration that you can come 'cause you don't make the finals in the Olympics and come back 90 percent. You got to be 100 percent to make that. So, there are people who've recovered even if they've been bed ridden for years. That gives us hope that, you know, Rachel can lead a normal life and she hasn't given up on that and we haven't given up on that.
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