Tag Archives: #lymedisease

The Silent Struggle: A Personal Reflection on misdiagnosed/ misunderstood conditions

I recently had to attend a doctor’s appointment with a doctor who had ordered a lung function test way back in the fall. At the end of August I got extremely sick with what she thought was pneumonia. After weeks of antibiotics, trips to the emergency room and the cough worsening over time, she decided to order further testing on my lungs.

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Fast forward to a few weeks ago…2025

My results were normal. The doctor was left puzzled to why I got a viral infection which worsened by the day for almost two months straight – instead of getting better over time. “The test results don’t make sense. They don’t match how sick you got and for the duration.” I knew it was lyme and bartonella complicating my health struggles – lyme is known for shutting down the immune system from functioning properly and bartonella co infection is known to affect one’s respiratory system. After ten months of not informing my doctor of the lyme diagnosis, I decided to “let it slip”. I decided to bring up lyme due to the fact that I do think it is impacting my lungs in some capacity. You may be wondering why I withheld such important information – most medical doctors do not believe in lyme.

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I had prepared myself for her reaction – which was exactly what I expected. I was told the lyme tests are unreliable and most likely I had a false positive. She is right, the two tier lyme tests are unreliable and often produce FALSE NEGATIVES even if one has lyme disease. It is very RARE to have a lyme test produce a false positive. However, the lyme test I had done is more in depth and is even recommended by Canlyme ( Canadian lyme disease foundation). We are also told over and over again that we do not have ticks here or have ticks that carry lyme disease – I totally disagree with this statement.

I also mentioned the SIBO gut issues I was being treated for -“SIBO is controversial, we don’t really know if it is a thing!” Say what? If you do a quick google search on SIBO, thousands of medical articles are found. In a matter of a minute, two of my biggest health struggles at the moment were dismissed just like that! I did get referred to a pulmonary specialist – maybe the specialist will be able to to run more in depth testing on my lungs.

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Over the last week, I have stepped back to reflect on this experience. How are we supposed to get proper treatment/help when so many medical providers do not think our health struggles/issues are valid and are labelled as controversial? Many medical providers world wide still believe fibromyalgia is not a legitimate condition and is often labeled as a mental illness. I wish I had some inspirational advice to give everyone, but I don’t. It is a frustration many of us face with invisible illnesses or misunderstood conditions.

I often thought my fibromyalgia was diagnosed too quickly. Even though my doctor at the time was thorough in running tests, there were symptoms that just did not match a fibromyalgia diagnosis. These symptoms were left without an explanation for years. I eventually just “accepted” the fibromyalgia diagnosis and tried to move on with life managing symptoms – with little success. Symptoms got worse as did the intensity of the pain. I saw no positive changes, because lyme was the underlying cause of my pain and symptoms – most doctors are not trained to diagnose lyme or simply do not believe lyme disease is an issue. I do have fibromyalgia, but the lyme diagnosis was the missing link.

According to one law firm lyme disease is one of the top misdiagnosed diseases.
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When medical professionals fail to understand a condition or simply do not believe a condition exists the following may take place:

  1. Being misdiagnosed with the wrong conditions.
  2. With the misdiagnosis – insufficient support and improper treatment .
  3. Health consequences. People continue to get sicker because because of delayed treatment.
  4. Psychological distress

It is hard for me not to think..

1 “If only the lyme had been caught sooner, I wouldn’t have become so sick!” The longer lyme is left untreated the more damage it can cause to one’s body head to toe. It can cause damage to vital organs if left untreated. This week I go for for an ultrasound on my heart to make sure the lyme bacteria has not entered into the layers of my heart muscles – it is known to cause an enlarged heart.

2. ” If only I had reached out to the naturopathic doctor (ND) sooner, instead of repeating the same lab tests over and over which all reflected normal. A friend of mine had given me the ND’s contact information two years prior to me actually reaching out to her. I wish I had done so way sooner.

3. The doubt from some medical providers ( not all) contributed to my anxiety disorder. If I had to see a doctor who was unfamiliar with my file, they would immediately blame the symptoms on anxiety. I’ve also been told by several health providers I was not trying to get better.

I am working on not focusing on the what ifs, as I can’t change what took place. All I can focus on is what is in front of me now – today. The what ifs were only contributing to my anxiety levels – increasing symptoms and making me sicker.

The Struggles of Maintaining Friendships Amidst Chronic Illness: A Personal Journey

We often form friendships with people who have similar hobbies and interests as we do. However, what happens when chronic illness takes away our ability to take part in those activities? Those friendships often cease to exist because we no longer have ” things in common”. This does not happen just with having a chronic illness – but at times friendships just tend to grow apart. Our hobbies and interests may change over time as well as our life goals – it is just how life goes.

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How do we make new friends when we have a chronic illness? I often found it difficult to make new friends as an adult before chronic illness set in- it seems like unless one is into the bar scene it is near impossible. It is even harder when you factor in a chronic illness. I soon realized I was hearing from friends less and less even if I reached out first – messeges often showed read and I received no response. For myself, when I got diagnosed with fibromyalgia in 2019, I started joining online support groups to be able to interact and chat to other people who understood the struggle with chronic pain and every other symptom fibromyalgia seems to throw at us. I found a few people on the group that lived locally and we started going out for lunch or coffee. There was never any hurt feelings if we had to cancel last minute due to not feeling well. I later started fibrofighters – there are quite a few followers who I speak to daily, eventually adding them to my personal Facebook account and consider them to be some of my closest friends. I can always count on them to be there to listen to my struggles even though they are half way around the world. They get it! Strange how people who you have never met can become your main support systems.

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In April 2024, when I received my lyme diagnosis I found myself facing another bout of lost friendships. When I expressed how disappointed I was in “friends” reactions to being diagnosed with lyme disease to the doctor treating me, she looked at me and asked me one simple question , ” Do you really want/need people like that in your life?” Of course my answer was no. Even though it still stung for several weeks, she was right – I don’t need people like that in my life. These “friends” decided to voice their opinions on my treatment routes – it is fine to have an opinion ( we all have opinions), but was it necessary to launch a personal attack and name call?! NO!! You would think my decisions were impacting their lives directly – when they were not. I know their responses were due to lack of knowledge on lyme – however this did not give them the right to treat me in this manner.

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We can’t control how people react and respond, but what we can control is how we react and respond to them. Over the last week I have been listening to Mel Robbins “The Let Them Theory” audiobook. It has been an eye opener for me. I won’t be going into detail about the book itself in my blog as there is just too much information to cover. ” The Let Them Theory” has gone viral and was only published December 24, 2024! I kept seeing her book in every store I went into the last several weeks, so I decided to listen to the audiobook version.

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“If they want to leave… let them.

If they choose someone else…let them.

If they don’t support you…let them.

If they don’t invite you…let them.

Stop wasting your energy trying to change or control other people.

Let them show who they really are.

And then you can choose what you do next!”

These seven sentences resonated with me. I felt a sense of peace take over. I realized “friends” opinions and actions reflect who they are, not who I am as a person. The way I respond reflects who I am. I wish I knew about this theory months ago when these situations took place. I would have responded way differently. I think I am going to put this theory to the test. It is going to take time and commitment – but I think it will also better my mental health and over all well being.

LET THEM!