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Story 133

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

My name is Shymala, I am 34 years old. I grew up in Cape Cod, Massachusetts. I was diagnosed at the age of 30, but I have been sick since the age of nine. At the age of 9 I was running 5ks, seven, eight miles a day, grew up with a brother, sister, playing with them outdoors all the time. Came inside, did tick checks like crazy, grew up with a mother that was very into coming inside, drop your clothes, check us in the back of the necks. Of course being dark hair, she would check my scalp like crazy, under the arms, behind the knees. I don’t know if she really had us in white because of the ticks, but I mean, she was pretty thorough, she was just really scared of Lyme disease. But like I said, being an avid runner, I could have gotten bit by a tick on a trail, who knows. Back in the early 90’s my mom took me to several specialists, I was told it was the same experiences that people get today; chronic fatigue, so stop the running, she hasn’t grown into her body, she needs to slow down, you know, she’s running seven to eight miles a day, and she’s, uh, nine years old, ten years old, she’s not ready for this. She’s an overactive child. I don’t know what that means. She’s anemic, which you know, was true. I’m adopted, so we had no genetic background on me.

So she took me to a Hematologist and a-not quite Geneticist, but something along that line, and he said oh, well maybe she has Thalassemia, which is similar to Anemia, but really common in Mediterranean’s. So, my mom said well, we’ve explored kind of all our options. This is just something we’ll have to deal with — you learn to deal with chronic fatigue, you’ll deal with Anemia, this is it, you know? I’m really motivated, I don’t really give up. I continue to just keep going. So I continue to run, and I continue to go to school, honor roll student, just continued to fight and continued to be tired, and just kept going. And then I had a knee injury doing a [SIGH] 5k, maybe my freshman year of high school. I fell in a pot hole and I thought that was why I injured my knee, and that kinda slowed down my running for basically forever. Went to St. Mary’s, had to take a semester off my junior year, I was so tired, couldn’t get out of bed, again, chronic fatigue. Graduated college a year late, ’cause of that semester off. Went on and got my teaching credential that was all I ever wanted to be was a teacher.

I’m sure you’re aware of how many hours a teacher works. I worked in underprivileged schools so those hours are horrendous. I was tutoring a student when I fell asleep reading to the student, and they asked me if I was alright. And I said yeah, Ms. Hoffman just must be a little tired. And I was home one night, signing off on report cards, and I literally was just dozing off, and it had to have been like 6:00, 7:00 at night. The Reverend had to take the papers, move them away, like literally carry me to bed. He said this just is not right. You’re 30 years old, something’s just not right. So I walked into my GP, told her this is not right, and she said well, you’re healthy. I mean, everything’s normal, you just had a physical. And I said I don’t care what the physical says, I know my body, something is wrong. I said I want you to run every single test, and she said well, I can, but I’m gonna run tests that you don’t like. I said I don’t care. And she said but you have symptoms of syphilis, AIDS, Lyme disease, I said I don’t care. But I don’t have AIDS, I don’t have syphilis, and I don’t have Lyme disease.

So, I walked over to Lab Core, had my blood drawn, she called me back two weeks later, she said, you’ve been through Lab Core western blot, looks like you have Lyme disease, despite how inaccurate these tests are, I still wanna put you on a month of Doxycycline. I tested positive for the babesia and then tested positive for bartonella. So babesia, I had to be treated with an anti parasite medication. Bartonella is another set of antibiotics in addition to Lyme antibiotics. We did 30 days of Doxycycline. It was the worst month of my life. It makes you awfully sensitive to the light, I was vomiting, couldn’t get out of bed for probably 20 of the 30 days. It’s frustrating because it’s like the saying, you know, you’ve gotta feel worse before you get better, and you truly do. So I went back to my GP, she asked me how I felt, and I said I don’t feel any better. And she said I can’t do anything else for you. And I of course took that very personal, thinking like she was tossing me out as a patient and realized that was the best thing she could have done for me.

And then I went to a Lyme literate doctor. So, when I first saw him, I stopped going to work for basically a month and a half. I had no feeling on the left side of my body, from my fingertips up. Within about six, eight weeks I was back to work full-time with work accommodations, so in my eyes he was lifesaving to be able to return to work 40 hours a week. Two and a half years oral antibiotics, very, very strong regiments. One symptom would be better, and then a new symptom would come, which is another very frustrating part of Lyme disease. And then after two and a half years, we parted ways. I went to another Lyme literate MD and we were doing oral antibiotics and natural protocols together. The combination causes a lot of Herx reactions which, you know, is a detoxification of the Lyme fibers. Same thing, very frustrating path of some symptoms getting better, new symptoms coming along. After the second Lyme literate, I was getting really, really frustrated that I wasn’t making a lot of headway, so I was just doing some research, and found a naturopath in Connecticut about an hour away. You can just slide right into treatments to some of the top LLMD doctors on the east coast, I was blown away, for half the cost of what you pay on the west coast. 

In the past I was just on a few different herbs and drops. Now I’m on about four tinctures, so they’re like drops you put in your mouth, or you swish in water and throw in your mouth. And then I’m on about seven or eight oral supplements, herbs, and then a couple herbal syrups, and it must be that they’re gentler on the stomach, I tolerate them much, much better. And I, overall I just  feel better. I mean I’m not supposed to be working over 40 hours a week, but I’m able to if I really have to, on the natural supplements, I’m able to walk five miles a day, a couple times a week. So, I have — they say — Lyme in the brain, so it causes brain swelling. It’ll cause neurological issues, so a lot of confusion when you talk sometimes, a lot of repetitive speaking and to be able to continue working and engage in a normal lifestyle. My first LLMD had prescribed me a pill that’s used for patients with narcolepsy, people in the military, they have work shift disorder. So if they work really odd shifts, you know, 3am on, that would mess up their sleeping routine. It’s been a game changer for me, it has allowed me to have a normal lifestyle. It has allowed me to be able to stay up to nine, ten o’clock at night and maybe actually have a date night with my boyfriend and be able to get up at five o’clock in the morning and go to work.

My joint muscle pain really became noticeable the past five to seven years, and that might be because I had to stop working out, I wasn’t running as much, I wasn’t as active. I primarily have it on the left side. I treat it with a Fibromyalgia medication. I also treat it with a series of natural medications through my naturopath. I do a lot of stretches, see my Chiropractor. I do a lot of soaking, detox baths hoping just to loosen up muscles. I live on a heating pad even in the summer. I sleep with a heating blanket, so every night I will sit and do different types of mind puzzles, just to keep my brain active, or push myself to do some sort of reading. It’s really frustrating, I get really angry, that I’m not sharp maybe as I used to be, but it’s super important to keep the brain active. And try to stay positive. I have overcome many symptoms, and then I have gotten a lot of old symptoms back. They come and go sometimes, and it gets really, really upsetting, it’s super upsetting.

Last weekend for instance my Palsy came back, and it was devastating. It’s been gone for nine months, I thought we overcame that. So next Friday I have my consultation with my Neurologist and guess what we got to talk about, my Palsy’s back. I get to talk about that. I did a half a smile, my eyelid could barely open, I get random blind spots. I just go almost blind in the right eye. I’ve gone about three or four months, five months perfect, absolutely perfect it’s been fine. The last six weeks, it’s going blurry again. And it’s scary because, do I wanna get in the car and risk somebody else’s life? On the right side I’ve had seven days pain free, and that’s pretty darn awesome too. You have to look at those things and you’ve gotta stay positive. I’m in a Lyme chronic illness retreat group for healing and getting to know yourself. I have met four girls that are just amazing, and I don’t know what I’d do without them, and that’s the best part about Lyme disease. If we haven’t heard from each other almost within two days we’re checking in on each other to make sure we’re alright. We’re very in sync with each other, worry about each other, somebody’s depressed about something, we’re there.

I have been with my boyfriend for five years, of course pre-diagnosis as well. He does not have to go through this with me, and he’s there through the whole thing. So he’s there a lot for me. And I have an amazing family. I think in regards to my own child expectations, I’ve had to learn to lower them a bit, and understand that it’s okay some days to say no. It’s okay some days to just have an average day, and it’s been really tough. But I have to do that to just maintain and not end up having a week in bed. It was very challenging for my boyfriend at the beginning so it was very difficult to not be out till two, three in the morning to get adjusted to you know, order in, monopoly, movie night. I think it’s a lot easier for people that see it every day, to adjust their expectations. They see you on your good days, your bad days. I have a manager that is just totally understands a chronic illness, he can just tell when I’m having a rough day and will just come over and say, pack up your stuff, go home, and work from home.

 The financial impact is really difficult. We moved out of a two bedroom, two bath apartment, into a one bedroom apartment. I’ve had to choose which treatments to better my health, which is the worst part. I mean, it’s awful to say oh, well this treatment, because I can afford it. I mean, nobody should have to do that, we’ve had to stop going on vacations. My vacations now are going back east for me medical treatments. That’s what my PTO time is for. I feel like our whole savings funds have gone towards my medical. I want patients to understand that you’re your own medical advocate, that’s the first thing, and you understand your own body, so you have to fight for yourself. That’s it. Plain and simple. Two, we need to increase Lyme awareness. People need to understand this disease, we need to get so much more awareness. I’ve come really far. I will probably always have up and-ups and downs. I’ve been fortunate to have an amazing family, an aunt that allows me to come stay with her while I get treatment back east. A wonderful boyfriend, and amazing supportive friends, and I think that is what allows me to stay determined and focused through my long journey and treatment. I would hope more patients will do that in the future to help with their healing.

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