Hello Everyone, I am writing my first update after being on antibiotics for 2 months now. I am currently taking doxycycline and rifampin, the length of time I could be on them is 6 months to 1 year depending on how my body reacts. The first 3 weeks of this “trip” were absolutely awful. Some of the hardest times of my life occurred over these 3 weeks. Unfortunately when treating chronic lyme and bartonella once medications are started the disease gets angry and worse. Prior to starting the medications I thought I was very sick, given I was compared to how a 27 year old should be feeling normally. Sadly it was very minimal compared to the pain and suffering the was ahead of me. Truth be told the only way I know how to explain this is I felt like I was dying. Its not an easy thing to explain when you feel sicker then you’ve ever felt in your life. A type of sick you would never wish upon anyone.
Starting with my head I was delirious and completely confused. Unable to put thoughts together, very simple things like walking to the washroom were a struggle. The light sensitivity was off the charts accompanied by noise sensitivity worse then I had already been experiencing. It was like every symptom I was suffering from before the meds was amplified. My memory got even worse, I had the hardest time communicating and even being understood due to slurring.
All the pain I had in my body got much worse. My muscles all felt like they had needles inside them, my joints felt frozen unable to move. Not only did I feel this way but physically my spine, hips, neck were being manipulated and moved from the disease somehow. I even stopped recognizing my hands, I didn’t know if this was because of how badly my eyesight has been changed or if the arthritis in my hands were causing them to physically change. Rashes and burning sensations under the skin are a common symptom of bartonella. These got much worse being on the antibiotics like everything else. The rashes were absolutely mind blowing. Having marks appear out of no where that looked like I had been mauled. They burned and itched only ice would sooth them. a regular part of treatment is detoxing the body in as many ways as possible. I have been taking almost daily detox baths. This would draw out these toxins causing the rashes making them more prominent.
The nausea was too much to handle. My stomach had never been in more pain before. I could barely eat causing my weight to drop to 90 pounds. I hadn’t been that skinny since I was 16 years old. Half of the time when I could eat I would end up so sick to my stomach I would automatically throw up. I can’t really explain how upsetting and scary it is looking at yourself in the mirror naked and seeing a frail 90 pound body. Especially when just one year ago you were 25 pounds heavier and full of muscle.
I was completely stuck in bed over these 3 weeks. Too weak to function or even be able to make yourself a meal. Having been sick many times over the last almost decade due to the undiagnosed lyme infection I knew what it was like to feel low with no energy but it truly never compared to what this was like on antibiotics. Even unable to brush your own teeth till 4pm in the afternoon. Your pure exhausted and all you want to do is sleep. Unfortunately all the pain your in keeps you awake often or when you are asleep being woken up by shooting aches or pains.
After the 3 weeks passed by the fourth week I felt some life in my body again. I was able to start eating more regularly keeping food down. My mind started working again, Not well I will add but working none the less. Able to spend time in the living room, sit outside for a few minutes, rather than being stuck in my bed. I felt a flicker of hope at this point. However this did fade. I soon realized nothing would be consistent about this journey I’m on. Everyday by 3-4pm I felt a black cloud roll over me. Absolute and utter exhaustion, sever nausea, Sharpe migraines unlike the dull headaches I’m always accompanied by, chills/or sweats, and pain increase in the body. I dreaded this time of the day it felt like a hell I was trapped in. By about 8-9pm id come around again. Feeling more revived and able to eat another meal.
I had come to realize by this point I wasn’t going to be feeling well anytime soon. This is a very surreal thing to go through. Unable to see your future clearly even knowing if you will have your health to count on. When going through a chronic illness you truly grieve for yourself and the life your missing out on. The whole world keep revolving without you and your left helpless but to pray brighter days are ahead. This of course brings on a deep wave on depression, anxiety, fear, and uncertainty in yourself. I promise you being sick like this the mental side of the fight is just as hard and painful as what is physically happening to your body. That is why people living with chronic illness are true warriors fighting daily for a better life.
At this point I didn’t think things could get worse but they did. My body hasn’t felt good in months. I’ve come used to being stiff and having my body not moving how a body is supposed to. A regular part of my treatment is getting weekly chiropractor adjustments. Each week my right hip would be out of place, my neck and my spine would need adjusting. I had been seeing the same chiropractor over the last year and had great relief from this. Each week it felt like my body had a harder time moving in the adjustments. They started becoming painful almost feeling like my joints were stuck. One adjustment in particular my shoulder blade didn’t want to move and suddenly a snapping noise occurred. The pain I felt in that second was excruciating. It completely felt like a large knife was stabbed into my shoulder blade and sitting there. Upon further investigation it appear my rib may be cracked. I was in an extreme amount of pain and couldn’t move my torso, arm and even neck. I had x-rays done but like many fractures nothing showed up. over the next week I could barely move, breathing was difficult and forget coughing or sneezing. I visited my chiropractor 1 week later and very small adjustments using a tool were made to adjust my rib cage. I woke up the next day in much less pain and feeling relief. After the next 2 weeks I felt 95% recovered from the incident. I will never know what really happened to my body that day. I 100% know Lyme disease caused it. This would make for 2 fractures over the span of one year. I went my entire life being rough on my body and never broke a single bone. Suddenly over the last year I’ve had nothing but problems with my frame. Unfortunately there is barely any research done on the effects Lyme disease has on your bones.
Fast forward to 2 months into my antibiotic treatment I’m feeling about 10% better then before I started taking the meds. My energy is still terrible but I’m able to spend a few hours a day out of bed. I have the energy and strength to do light stretching throughout the week to keep my body mobile. I’ve been feeling more aware and able to put together thoughts. My ability to read is improving however I still suffer greatly from sensory overload. I still have regular rashes and burning under my skin but the look of these rashes have changed. The rashes no are widespread and less bold. Looking more like spider veins under the skin. At this point in my treatment I am feeling more mentally exhausted then ever. Its extremely hard to stay positive and believe by summer time I will be functional again. I think as my brain function becomes more active/aware I have more time to think/worry about my future and what my abilities will be. Now the I have been on antibiotics for 2 months I feel a yeast overload inside my body. This causes great discomfort with extreme low abdominal swelling, sometimes leaving me looking 4 months pregnant. Im finding more then every my diet is so crucial needing to be careful of what I consume. I feel almost as if I have hit a plateu on the medication. My light and sound sesitivity is getting worse again some days are worse then others. My heart rate is elevated needing further investigation. Doing a slow paced short walk my heart rate sits around 140 beats per minute. This is alarming considering last year I had to run to get my heart rate up that high. Even my resting heart rate is rather high. My blood pressure is borderline reaching high something that needs to be watched closely. All things that require further investigation and monitoring.
I knew going onto antibiotics it wasn’t going to be easy but I really had no clue what I was in for. Like in many situations for things to get better they must get worse. Hoping and praying moving forward I see more improvement. Putting my faith in the lord that better days are ahead.