© 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.

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

No one believed me. Until physical symptoms started to occur that were visible I suffered alone. It felt like being a tortured prisoner in my own body. I communicated how I was feeling with others (doctors, friends & family) for over 15 years. The more I tried to explain myself to loved ones and medical professionals, the Moreau symptoms and the pain was invalidated. I was told to see a psychiatrist. I went to many. Then I began a journey of collecting over 1,000 medical treatment papers. I felt like a guinea pig. I heard, “Sorry, I can’t help you. There’s nothing I can do until you have a proper diagnosis.”  I began to invalidate my own experience because nothing showed on routine testing and my health plummeted and nearly died multiple times. 

I decided I’m a warrior. I decided I wanted to survive. I decided I would stand up for myself and speak my truth. I decided enough is enough. I told myself I am worthy of proper health care, and I will receive it. I reclaimed my personal power. I began to allow others to see me as I am, share my story and hear my voice. Yesterday I had surgery to remove a large lymph node in my groin. I had a biopsy done to check for lymphoma. This disease is very real and it’s brutal. I never felt such validation for what I’m going and have been through. Keep going warrior, you can.

What inspires you?

“Smooth seas never made a skilled sailor.”

“Ships are safe at harbor but that’s not what they are made for.”

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

This is what a Tick Borne Illness/Lyme Disease feels like! I’m in so much body pain, exhausted, having a hard time staying awake, nauseous, my feet, spine and brain feel like they are on fire. I hate this, Chronic Lyme Disease hurts like hell! Top it off with losing my partner, The Burn is on! From the middle of my back to my toes! From minute to minute things can change and you can go from happy, to ouch and curled up in pain and crying. #lymedisease #fibromyalgia #chronicpain #cantwalk #cantstandonmylegs #dontfeelsorryformyelf #justneedyoutoumderstand #babeisos #burning #standingonhotcoals #feetaregonnaexplode #tickborneillness #Malaria #Alzheimersgene

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

Lyme is Afmattende moeheid. In mijn hoofd wil ik zoveel. Maar mijn lijf laat het afweten. 

Lyme heeft mijn leven veranderd van iemand die onvermoeibaar door kon gaan, naar iemand die altijd pijn heeft, moe is, en soms de energie ver zoeken moet. Maar ik probeer wel positief tegen het leven aan te, kijken. <3

~ English ~

Lyme is debilitating fatigue. In my head I want so much. But my body is failing.

Lyme has changed my life from someone who could go on tirelessly, to someone who is always in pain, tired, and sometimes has run out of energy. But I try to look at life in a positive way. <3

© Illustration by Life in Lyme Light.

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

At 23, El went on the road trip of a lifetime. But she came back with more than just memories, and a tick bite took away her 24. The worst part is, it nearly took her life, too. 

When she flew home last December, she had random symptoms. A pain in her leg she thought was a DVT. By April, she had meningitis (now known to be Lyme Encephalitis) She rapidly went downhill day by day. More symptoms emerging by the minute. 

We lost control. Blood pooling in her feet, making her faint – writhing in agony, slowly losing the use of her legs, full use of her brain, her organs were attacked and by the time the infection reached her heart – she nearly lost her fight with this harrowing disease

She’s lay in a dark room 24/7 for most of 2017 – only moving to be carried to the bathroom and even that was too much for her. She lost over 2 stone from sickness. She toughed it out for a year, scan after scan, test after test, trying her hardest to survive each day. She’s been forced to face fears and pain that no one ever should. 

Last week, she was referred to a specialist. They took one look at her and El was admitted for urgent treatment – IV medication twice a day. We’re praying it works – but it took her getting this severe for someone to treat her properly. The cardiologist was surprised she survived the VT. The physio said she may never walk again. The dietician thinks she needs a feeding tube. The consultant said to ‘let go of the person she was 12 months ago’. Last week brought more pain. Life changing news. But she is still here

This year, El got a PICC line into her chest for Christmas – she was given a chance to survive. She was given life – and that is the best gift we can ask for. The Doctors don’t know if this will cure her. But she’s determined, the strongest person we know, and one day we will fight to raise awareness about Lyme disease – a devastating, debilitating illness caused by ticks that are the size of a PENCIL DOT that can change your life forever. We will post more when we can, but right now, we’re just trying to make it through each day.

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

Opis Małgosi jest jeszcze sprzed badań, które nam zasugerował pewien Pan. W tym momencie wiemy ze Gosia ma boreliozę, która ulokowała się w układzie nerwowym w koinfekcji z bartonellą (badania wykonane w centrum Wielkoszynski) ponadto na wysoką homocysteinę i w klasie IgG dość wysoki EBV. Od lutego jest już na antybiotykach, suplementach i witaminach,  które zapisał nam dr Kozub z Będzina. Wyniki krwi się pogorszyły trzeba było odstawić na miesiąc leki. Jest bardzo ciezko. Serce mi pęka jak patrzę na jej cierpienie i nie mogę jej pomóc. 

Wszystko zaczęło się w czerwcu 2017 roku moja, wtedy 13 letnia córka, została zaszczepiona szczepionką przeciwko błonicy, tężcowi i krztuścowi i wtedy wszystko się zaczęło…

Pół godziny po podaniu szczepionki córka zrobiła się czerwona na twarzy jakby cała krew jej uderzyła do głowy a odpłynęły z niej wszystkie siły – jakby miała zemdleć. Nie można było jej zrozumieć, bo bełkotała zamiast mówić. Nie miała siły wstać z krzesła i taka niemoc trwała około 5-7 minut. Później wróciło wszystko do normy. 

Wieczorem córka zaczęła się uskarżać na rozpierający ból głowy. Porównywała go do czegoś takiego, jakby jej głowa była balonem i ktoś ją pompował. Później taki sam rodzaj bólu był w miejscu podania szczepionki. 

Od dnia podania szczepionki córce dość często przez okres około 2 tygodni robiło się słabo, była senna i apatyczna, spała w dzień po kilka godzin, gdzie nigdy wcześniej to nie miało miejsca. Pojawiły się bóle stawów a w miejscu podania szczepionki odczyn. Ręka była nabrzmiała, czerwona i było na niej twarde zgrubienie. Przez cały czas utrzymywała się temperatura 38,6 stopnia. Kiedy poszłyśmy z tym do lekarza usłyszałyśmy, że to nie ma związku ze szczepieniem. Stwierdził, że było to nasilenie alergii, bo córka jest uczulona na lipę, która akurat pyliła. Zrobiłam badanie IgE i wyszło 18 w zakresie od 0.0 do 200 więc wyniki tego nie potwierdziły. 

Od tamtej pory córka skarżyła się na ból kolana lewego, aż do momentu kiedy zaczęło się ono blokować. W listopadzie zaczęło to bardzo przybierać na sile. Okazało się ze jest przerost fałdu błony maziowej. Kolano zostało zoperowane w kwietniu 2018. W czerwcu czyli rok po szczepieniu córka zaczęła odczuwać dziwny ból, drętwienie, zimno, utrata czucia w palcach lewej dłoni. Gdy pojawiło się to uczucie, pojawiła się również przeczulica na zimne. Mówi, że gdy dotyka zimnych przedmiotów sprawia jej to ogromny ból. Oprócz tego ciągle odczuwa jakby kurcz w śródręczu.  

W sierpniu 2018 pojawił się pierwszy kurcz stopy, który trwał 20 minut, a stopa była cała powykręcana – to było straszne. Ona tak bardzo cierpiała, a ja nie umiałam jej pomóc… Później te kurcze pojawiały się dość często w różnych dziwnych miejscach, ale zawsze z przewagą lewej strony i pojawiają się nadal. W grudniu był pierwszy kurcz w kręgosłupie i miała ogromny problem z oddychaniem. 

Cały czas ma problem z lewym barkiem, który jest cały czas bardzo spięty i bardzo boli do tego stopnia ze czasem z bólu wymiotuje i ten bark przy ruchu bardzo głośno przeskakuje. Lekarz twierdzi ze to nic takiego… 

Od maja 2019 oprócz wszystkich wyżej wymienionych objawów, które się utrzymują a nawet się nasilają, dołączają nowe jak bardzo silne drżenie lewej dłoni i nogi. Mogę to porównać do choroby Parkinsona. Również pojawiła się bardzo dziwna senność, która przychodzi nagle i sen jest tak głęboki, ze kiedy byłyśmy w szpitalu to nawet pobieranie krwi nie było w stanie jej obudzić. Pojawiły się od lipca bardzo silne migreny ze światłowstrętem, suche oczy, zaczęły jej bardzo wypadać włosy i w ciągu niecałego roku bez diety i odchudzania schudła 14 kg. Ciągle utrzymuje się jej silny ból kręgosłupa w odcinku piersiowym i lędźwiowym. Do tego stopnia, ze jak myje głowę to później przez pół godziny nie może się wyprostować. Dołączyły również od niedawna silne napadowe bóle głowy, które nie pozwalają normalnie funkcjonować oraz bardzo niskie ciśnienie np. 70/28 

Tułamy się po szpitalach i wszędzie w wywiadzie zaczynam od tego szczepienia i jaka jest reakcja? – ironiczny uśmieszek pod nosem. Mam wrażenie ze jestem brana za wariatkę, a moje dziecko za symulantkę. A ja szukam dla niej pomocy bo Ona cierpi. Dodam, że córka jest po dwóch próbach EMG, które wykazały wybitnie dodatnią tężyczkę, natomiast wyniki krwi tego nie wykazują. Lekarze nas odesłali z niczym. Nie wierzyłam w to, że Gosi nic nie jest i miałam rację.  

Pozdrawiam Ewa M.

~ English ~

Małgosia’s description is still before the research, which was suggested to us by a certain Lord. At this point, we know that Gosia has Lyme disease, which is located in the nervous system in a co-infection with Bartonella (studies performed in the center of Wielkoszynski), in addition to high homocysteine ​​and in the IgG class quite high EBV. She has been on antibiotics, supplements and vitamins since February, which Dr. Kozub from Będzin has written for us. Blood results worsened and medication had to be stopped for a month. It’s very hard. My heart breaks when I look at her suffering and I can’t help her.

It all started in June 2017, my then 13-year-old daughter it all began…

Half an hour after, my daughter turned red on her face as if all her blood had hit her head and all her strength had drained out of her — as if she were to faint. You couldn’t understand her because she was babbling instead of talking. She had no strength to get up from the chair and such weakness lasted about 5-7 minutes. Later everything returned to normal.

In the evening, my daughter began to complain of a distracting headache. She was comparing it to something like her head was a balloon and someone was pumping her. Later, the same type of pain was at the injection site.

From that day, she often became weak for a period of about 2 weeks, she was drowsy and listless, she slept a day for several hours, where this had never happened before. Joint pain appeared and the reaction site. Her hand was swollen, red and there was a hard swelling on it. The temperature was 38.6 degrees all the time. When we went to the doctor with this, we heard that it was not related. He stated that this was an increase in allergies, because my daughter is allergic to linden, which was just dusting. I did an IgE test and it came out 18 in the range from 0.0 to 200 so the results did not confirm this.

From then on, my daughter complained of left knee pain, until it began to block. In November it started to gain momentum. It turned out that there is hypertrophy of the synovial fold. The knee was operated on in April 2018. In June, i.e. a year after, my daughter began to feel strange pain, numbness, coldness, loss of sensation in the fingers of her left hand. When this feeling arose, hyperalgesia also appeared. She says that when she touches cold objects it causes her great pain. In addition, she still feels like a cramp in her metacarpus. 

In August 2018, the first cramp appeared, which lasted 20 minutes, and the foot was all twisted – it was terrible. She suffered so much, and I could not help her… Later, these cramps appeared quite often in various strange places, but always with the predominance of the left side and they still appear. In December was the first spasm in her spine and she had a huge breathing problem.

She has a problem with her left shoulder all the time, which is very tense all the time and hurts so much, with time she vomits from pain and this shoulder jumps very loudly when moving. The doctor says it’s nothing…

From May 2019, in addition to all the above-mentioned symptoms that persist or even intensify, new, very strong tremors of the left hand and leg are added. I can compare it to Parkinson’s disease. There was also a very strange drowsiness, which comes suddenly and the sleep is so deep that when we were in the hospital, even taking blood was not able to wake her up. Very strong migraines with photophobia appeared, since July, dry eyes, her hair began to fall out and she lost 14 kg in less than a year without dieting and losing weight. Her severe back pain in the thoracic and lumbar spine continues. To the extent that when she washes her head, she cannot straighten up for half an hour. Recently, severe paroxysmal headaches that do not allow normal functioning and very low blood pressure, e.g. 70/28, have also joined.

We wander around hospitals and everywhere in the interview and what is the reaction? — ironic smile under his nose. I have the impression that I am taken for a madwoman and my child for a liar. And I am looking for help for her because she suffers. I will add that the daughter is after two EMG trials that showed an extremely positive tetany, while the blood results do not show it. The doctors sent us away with nothing. I did not believe that Gosia was okay, and I was right.

Regards Ewa M.

© Illustration by Life in Lyme Light.

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

This could happen to anyone of any age. Fighting the UK system that doesn’t believe that chronic Lyme exists, even though the scientific evidence is overwhelming, when the rest of the world seems to have it dialed, makes being sick that much harder. There is still no 100% cure for everyone and most treatment is mega expensive, but there are treatments that help you feel better. If you get Lyme in England don’t let doctors fob you off, it’s not their fault they have to follow guidelines or they get in trouble.

Guidelines that say 1 course of antibiotics fix you even though there are thousands of us still struggling with Lyme symptoms. Even though the medical world has recognized and proved this bacteria is a persister. But according to the NHS you coincidentally get MS or fibromyalgia or chronic fatigue syndrome or rheumatoid arthritis or lupus or Hodgkins lymphoma at exactly the same time. 

Luckily had the tell tale erythema migrans rash which is a given, so they say I definitely had it but now it’s gone.??? You tell my muscles that when they twitch and cramp all night or my glands when they swell every other day, or my head when it hurts so bad I can’t speak, or my joints when they swell and click or when my kidneys start hurting so bad I want to cry. And when the brain fog hits it’s hard to understand anything you get so confused. This bastard bacteria fucks with every little part of your body.

As soon as I am strong enough, I am going to fight this inadequate outdated protocol to get better testing currently 15% (I think) reliable. And help to get at least one Lyme specialist in the NHS. Approximate figures are 30,000 people suffering in the UK alone but not one specialist, not one research centre that I know of but would love to find one.

It has ridden me bedbound, it has taken me out of life, it has given me more pain and discomfort than I ever thought possible. But it has also made me appreciate my life and my body. Lyme sucks, it’s hard to endure, it is like going to hell and back and then some.

If you are suffering from Lyme disease hang in there. And read ‘Why Can’t I Get Better? Solving The Mystery of Lyme and Chronic Disease’ by Richard Horowitz an actual expert on Lyme and other co-infections the tick gives you. You will stop feeling like you are losing it. There are so many of us just like you.

Where there is a will there is a way.

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

It was 3 or 4 days after I found the tick. I’m thinking it was probably attached to my ankle for 3 days prior to me finding it. I had sat in the grass early one morning and then walked in the woods kicking around the leaf litter and kneeling down into the green mossy forest floor right after that and found the tick 3 days later when showering. We were camping in Thompkin’s county in a rural area of New York State. I am from New Mexico so had absolutely no idea how bad the ticks and Lyme disease risk were at the time. I had ankle socks and didn’t do a tick check. I didn’t shower for 3 days because we were camping. So, by the time I found it I already had the rash and it was after I removed the tick that I started getting other symptoms.

Bullseye rash with a wriggling tick swollen with my blood in its belly, high fever with body aches at the beginning and then the bad stuff hit. Had positive WB after a tick bite. Still having symptoms and MCAS with a negative WB after oral Doxy capsules. I was told it’s Post Lyme Disease Syndrome by my GP. Some days I feel like it’s worse than when they said it was positive. My joint pain and swelling is out of control. My Homeopathic doctor says it’s because the Lyme likes to hide after treatment with antibiotics and isn’t picked up by the WB, but is most likely still there. Been battling every day since September 2017.

Lyme has changed my life completely, changed me completely. Even the smallest things that you wouldn’t think about get shaken up and changes made because of Lyme.

Like music for example, someone who knew me before Lyme would say, ‘yeah Sharon the metal head’ when after having Lyme—I cannot listen to anything that makes loud noise or has a heavy bass. I ended up changing my music style to folk music like singer songwriter type music with only lyrics and acoustic guitar. 

Then, there were food changes that had to be made almost immediately after I got sick, allergies to clothing and make up lotions and perfumes. Physical changes, I lost weight, had to start wearing glasses, the rashes from MCAS… it takes a toll in every aspect of life.

What inspires you?

I spend time in my garden (nothing too difficult, but I sit with the plants, harvest herbs and connect to the earth) and I make quilts. It’s therapeutic and meditative. My mantra is Look to Mother Earth for healing. Nature is the most healing place with all the medicine readily at hand. It’s ironic that the place I was bit by a tick (in nature) would be where I find the most healing from Lyme (herbal medicines and gardening).

How has Lyme Disease affected your life?

I was diagnosed with Lyme as a senior in high school. I was 17 at the time, and now I’m 23. I don’t remember what it feels like to not be sick. Lyme has impacted my life so much and been such an uphill battle. But what Lyme has taught me is that I want to help others feel less alone and I’m so passionate about helping people live well with chronic illness. Because of that, I’m currently a virtual health coach and I’m a soon to be Occupational Therapist. More than anything, I want to take my experience and my struggle with lyme and turn it into something that I can use to positively impact others.

What inspires you?

What inspires me is knowing that I’m not fighting this fight alone. There are so many of us who are living this battle day by day and continuing to be courageous and strong, and show up even when it’s hard. What inspires me is knowing that those of us who are continuing to share our stories are letting people know that this is real and scary, and we have to do something. And each time one of us shares our story, we’re spreading hope and awareness, change is going to happen. That’s what inspires me more than anything.

© Illustration by Life in Lyme Light.

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

Ich war vor kurzem beim Privatarzt. Ich wurde immer schlimmer. Ich hatte auch 7 Jahre lang mit meiner Gesundheit zu kämpfen. Angefangen bei Sehstörungen bis hin zu Muskelkrämpfen, Brennen und Schmerzen. 7 beschissene Jahre. Ich habe die Diagnose letzte Woche erhalten. Ich weinte vor Freude. Ich weiß endlich, was los ist. Ich wusste 7 Jahre lang nicht, was los war. Nichts wurde jemals gefunden. Der Kampf kann jetzt beginnen. Ich denke positiv. Greetz aus Deutschland. ☀️

~ English ~

I was recently at the private doctor. I was getting worse and worse. I also struggled with my health for 7 years. Starting with visual disturbances, to muscle cramps, burning and pain. 7 shitty years. I received the diagnosis last week. I cried for joy. I finally know what’s going on. I didn’t know what was going on for 7 years. Nothing was ever found. The fight can now begin. I think positively. Greetz from Germany. ☀️