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Life in Lyme Light Posts

Story 132

© 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.”

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Story 131

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

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Story 130

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

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Story 129

© 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.

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Story 128

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.

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Story 127

© 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.

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Story 126

© 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).

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Story 125

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.

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Story 124

© 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. ☀️

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Story 123

© Illustration by Life in Lyme Light.

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

Hola soy Michell de Hermosillo Sonora Mexico.

Hace 1 mes me diagnosticaron la enfermeras Lyme, después de 3 años sin saber lo que tenia ! Y hoy ya tengo un diagnóstico para seguir mis tratamientos, después de muchos dolore s de espalda, brazo, cabeza y muchas partes más, y ahora día sigo batallando y luchando para recuperarme de todo !!!

~ English ~

Hi, I’m Michell from Hermosillo, Sonora, Mexico.

1 month ago I was diagnosed by the Lyme nurses, after 3 years without knowing what I had! And today I already have a diagnosis to follow my treatments, after a lot of pain in my back, arm, head and many other parts, and now I am still struggling and struggling to recover from everything !!!

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