The Life of a Lyme Sufferer

I lost the ability to work in 2004 and was diagnosed with bipolar disorder. This was one of the lowest and darkest times of my life. I lost my career, country dream home and most of my hope. Worst of all I lost countless precious years with my children. I was having so many health issues that none of my doctors would attribute to anything other than the bipolar disorder or the medications used to treat it.

There were almost daily headaches, terrible brain fog, joint pain, muscle pain, extreme fatigue and many cognitive issues. I also had anemia, very low blood pressure, low body temperature, hair loss, impaired vision and dizziness. My brain just didn’t work anymore. Once at a doctor’s appointment I couldn’t remember my address or my son’s middle name. I often had to pull over in my car because I couldn’t remember where I was going. I couldn’t drive anymore as I just didn’t have the normal reflexes to navigate traffic.

I suffered along for the next 8 years and was given a Chronic Fatigue and Fibromyalgia diagnosis with no further help whatsoever. Every single doctor blamed all of my symptoms on the mental health diagnosis, and so I suffered….

I usually woke up with left-sided numbness and tingling. I would limp to the bathroom, as the soles of my feet were so sore I could barely put weight on them. Headaches were a daily issue, as were extreme fatigue and muscle weakness. Every day of my life felt like I had the flu. If I had to measure my un-wellness on a scale of 1 – 10 with 10 being the worst, I spent most days between 8 and 10. I was exhausted every single day and dragged myself along, often by sheer force of will.

A very lonely time

I was finally diagnosed with Lyme in August 2012. By this time, I had lost most of my friends. Friendships take energy and I was mostly housebound by this time. Most family members offered little to no support. I received blaming and shaming comments like, “we know she suffers from depression” or ” why don’t you bake a cake for someone” or ” you really do have a lot to be grateful for” or “so, are you working anywhere?” or “she just needs to be prayed over.” My personal favorite was when that one person would declare over and over for all to hear, “Oh! But you look so good!” In other words….you can’t be sick. What people didn’t realize was that when I was really sick, I never left the house. Most never saw me at my worst. Needless to say, these kinds of comments just drove me further and further into isolation.

Eventually, I just stopped trying to explain to anyone what I was going through. It was better for me to just stay quiet and not invite the judgemental comments. I began limiting the number of visits with people who had not been supportive or interested in what I was going through. The only support I received was from my husband Tony and a number of friends from my recovery groups. I was so grateful for their love and care. These were the ones who watched me almost crawl into a meeting and turn 50 shades of yellow before the hour was up. They simply said, “Wow you look bad. Hope you feel better soon.” I also had the support of my fellow Lyme warriors on many different Lyme forums. This was probably what helped the most because they knew exactly what it meant to live with this disease. Many were quick to offer encouragement and help with treatment options.

Lyme treatment and feeling worse

What most people don’t know is that when a person begins treating the Lyme, things usually get worse. When something is taken to kill these pathogens, they release endotoxins that make the person feel exponentially worse. In the early stages, we have to deal with active infection plus all of the endotoxins creating die-off reactions (also called Jarisch-Herxheimer Reaction). Here is a post that offers some strategies for dealing with die-off.

Common die-off symptoms for me were nausea, dizziness, feeling hungover, body pain, constipation, migraines, vomiting, headaches, weakness, fatigue and emotional upset. These symptoms can be very similar to those accompanying an active Lyme infection but magnified.

It took about 5 months before I started feeling better on the herbal protocols. By this time I completed a bowel cleanse, parasite cleansing and Buhner’s Lyme Protocol. It takes time to get the infectious load down low enough to finally experience some relief.

Many missed occasions

There were so many missed birthdays, weddings, family gatherings, retirement dinners, school events, sporting events, coffee dates, lunch dates, shopping trips and everything else that required personal grooming. This would mean having the strength to take a shower, get dressed and leave the house. Most people don’t understand that the simplest of tasks requires a Herculean effort on the part of the Lyme sufferer. Many days it would take all the energy I had to get showered and wash my hair. But I rarely had the strength to lift my arms above my head for any length of time. So hair washing was an infrequent occurrence. There were so many times that I was too weak to walk from the house to the car or even sit upright in a chair.

I learned to say that I couldn’t commit to anything anymore. This took a huge burden from my shoulders and I no longer let the guilt of canceling bother me. I was too sick to care anymore about what others thought of me. It was a very liberating time.

It was a good day if I could get dressed. It was a better day if I could take a shower and do my hair. It was the best day if I could leave the house and go to a recovery meeting. While there were some good days, they were unpredictable. I might have one good day every 2 weeks if I was lucky. I could only make plans based on how I was feeling each day.

Huge financial drain

Those of us with Lyme not only have to deal with the loss of income but the huge expense of trying to treat ourselves out of pocket. We spent thousands and thousands of dollars and I mostly self-treated: herbs, supplements, tests and visits to see alternative health practitioners. Many of these are not covered under our health insurance plan. The Lyme Literate Doctors (LLMDs) are very expensive and beyond what we could have afforded. In Canada Lyme was not even acknowledged yet. So there was the constant worry about paying bills and making ends meet. Due to decades of illness, I do not have a big retirement fund to fall back on.

I live in Mexico because I can live simply here on 1200 USD per month. It would cost me a lot more to live in Canada. My hope is to be able to spend more time there in the future.

Lack of research, proper testing and treatment

Many of the Lyme tests are inaccurate. This is why I chose to see a health practitioner that could provide a clinical diagnosis. Lyme is such a complex disease that requires a functional medicine approach. It is important to address not only the Lyme and co-infections but correct the diet, fix digestion, address food allergies, nutritional deficiencies and detoxification strategies. There are often other issues that need to be addressed like balancing blood sugar and adrenal and thyroid disorders. Most medical doctors will not take this kind of healing approach.

There is hope!

People are recovering! I have been in complete remission since November 2014 and no longer deal with that long list of symptoms every day. I feel better than I have in decades and I have a new freedom and appreciation for life. I can hike, swim, snorkel, socialize and feel very proud of all that I have overcome. I chose Buhner’s Original Lyme Protocol , bowel cleansing, parasite cleansing with my own herbal recipe, Wahls Paleo Diet and a few other natural therapies. So if you are suffering from Lyme just keep fighting and search for what you feel will work for you. The human body is an incredible self-healing machine if given the right nutrients and care. I do believe we all have the ability to help ourselves to not only overcome Lyme and co-infections but to emerge better than ever. I know I have.

Best of Health!

Brenda♥

Everything that I have done to heal myself is available for free on my blog. If you are interested in some additional help I offer online health coaching. Please go to this page for nutritional therapy and hair analysis.