Monthly Archives: January 2025

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

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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

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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!

SIBO – What is it? Is there a correlation between SIBO and Fibromyalgia?

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Have you ever heard of SIBO? Most people will say no to this question. I hadn’t heard of SIBO until I started seeing a naturopathic doctor. SIBO stands for small intestinal bacteria overgrowth – it is not the same as IBS or c diff.

I started seeing a naturopathic doctor (ND) in April of 2024 to treat chronic Lyme disease. Before we had even tested for Lyme, the ND was positive I was dealing with SIBO. She immediately put me on a herbal treatment for it and it was gone in three weeks. It is said that 70% of people who have lyme disease often get SIBO. This is my third time being treated for SIBO and it has been the worst case I have had thus far.

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What is SIBO?

SIBO is a condition where there is an abnormal increase of bacteria in the small intestine.

Symptoms of SIBO:

You can find more information about SIBO at the Mayo Clinic here.

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How is SIBO diagnosed?

  1. Symptoms. If medical providers know the warning signs of SIBO, a conversation with your provider may lead to a SIBO diagnosis. In my case the ND I see treats SIBO often and she knew what was wrong before we even sat down to discuss details.
  2. There is a breath test that can be done to determine how much hydrogen or methane one breathes out after drinking a mixture of glucose and water. I do not think this test can be ordered in a regular medical lab ( maybe in some areas of the world) . I do know many naturopathic doctors offer the testing, but it can be fairly pricey.
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SIBO and Fibromyalgia

Out of curiosity I began googling fibromyalgia and SIBO – and found many studies indicating there is a correlation between the two conditions. Over the years, I have read that gut health needs to be corrected if one has fibromyalgia, but never understood the connection. I continue to do reading on how the gut biome can affect many health conditions to try to understand. Experts state the gut is connected to many parts of the body – including the brain.

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In one study, 815 people were tested for SIBO using the breath test. 123 people in the study were known to have fibromyalgia. Out of the 123 people tested for SIBO, 96 tested positive. That is 78%. The study concluded that small intestinal bacteria over growth is associated with a fibromyalgia and when treated for SIBO intestinal symptoms improved. You can read about the study here.

Another study conducted in 2004, concluded that 100% of the participants with fibromyalgia had SIBO. This study can be found here

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Even though these are both older studies the findings/results were consistent. I found a few other studies regarding SIBO and fibromyalgia, but due to very little information on the studies themselves, I chose not to include the links in my blog. I think this is due to the fact that the studies are older so only giving you the quick run down of the studies. It would be interesting to see some current studies on the subject conducted to see if the findings are still similar.

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After beginning treatment for SIBO through herbal routes, I mentioned to a few medical doctors that I was being treated for SIBO. To my surprise, their response was, “What is that?” Medical doctors do not seem to even know what SIBO is – yet alone how to diagnose it or treat it. SIBO can be treated with antibiotics, but in my case heavy antibiotic use for seven months for lyme treatment was the culprit to why I developed SIBO in the first place. I was on several probiotics while on antibiotics to help counter act the gut biome from being destroyed – sadly in my case it didn’t seem to be enough and the SIBO bacteria got away on me.

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After 4 weeks on various herbal supplements provided by the naturopathic doctor, I began to see improvements. The stomach bloating began to settle down, along with severe cramping, loss of appetite and severe diarrhea. Week 6 – has been fairly up and down with SIBO symptoms yet again. I am attributing the increase of symptoms due to having to switch to another supplement that may not have been strong enough to keep eliminating the bacteria.

I often wonder how I would have gotten the proper medical treatment without the naturopathic doctor being able to recognize the warning signs of SIBO – being medical doctors don’t seem to know what it is. I know I have several months left of treatment, but at least it is slowly getting better.

Next time you may be having major gut issues, consider SIBO as a possibility. You may have to advocate for yourself as many health care providers may not know what SIBO is.

Here is a good ebook i found online about SIBO symptoms. I thought I would include it for those interested in reading more information.

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