Lyme disease and co-infections are such a complicated and complex disease as is the treatment for them. I am at the end of my third year of treatment and to my sadness just found out my babesia is back and now in my kidney. I have begun treatment again for it and to say it has been excruciating is an understatement. It is not just the new amount of pills added to the previous ones, along with new detox treatments but also the pain that us Lymeies call the herx reaction.
As defined by Holtorf Medical group “The Herxheimer response is a natural bodily process triggered by a greater prevalence of endotoxins. These substances are released when harmful microorganisms and bacteria are destroyed or die off. As damaging bacteria are destroyed, they release previously contained endotoxins into the bloodstream. This allows the toxins to be transported to the appropriate system and subsequently expelled from the body. However, rapid destruction of bacteria can cause an influx of endotoxins resulting in greater toxicity. When this occurs, the immune system responds by triggering an acute immune response resulting in inflammation that may be experienced throughout the body. This can cause worsening of current symptoms and the development of new flu-like symptoms such as brain fog, lethargy, chills, cold sweats, sore throat, muscle pain, and more.”
In patient words, “you get worse before they get better”. A herx reaction can be extremely painful and for me, takes all my symptoms and times them by what feels like 100! These past two weeks my whole body pain has been a strong 10, brain fog has worsened, and I feel like the inside of my body is on fire.. every piece of me hurts. I have found through this journey that no day will ever be the same. Each morning you wake up to something else, good or bad and you do your very best to tackle the day. Today brought with it a new herx reaction and one that shocked my morning. Every inch of me’s covered in what would be similar to hives . This journey never seems to end and can bring you to your knees. It is sometimes hard to find the strength to continue the fight when every time you turn around there is something new to deal with, to fight with, to endure while still continuing to struggle through the rest. It is a fight that appears to have no mercy and no real light at the end of the tunnel. It brings with it fear, hopelessness, and down right sadness for the person you once were. The longing to wake up one morning for this nightmare to be over and for you again to have your once healthy life back. To not have to cancel appointments, not hide in your house, to not hate the person you have become. It is not only a struggle but a brutal fight! I am hopeful that those in my same shoes take time to process, feel, cry, yell, and do what they need to make it feel less heavy. To not bottle up the pain and sadness but to feel it as you need to and deserve to. This journey is not easy, never let anyone tell you differently. However, once you go through the stages of what really is grief, step on that moving train again and continue to fight. The hard times are plenty but so are the good. Maybe the fight helps us to appreciate the good times just that much more. Maybe it helps filter out those things in life that just do not matter. Maybe it is to remind us of just how tough we really are. There truly has to be a reason and I am determined to find it.
The struggle is real, the fight is real but you are strong enough to find the light at the end of the tunnel and if by chance you need a buddy to help you along the way, call me. We can be superheroes together. This journey just might take a larger village then I ever thought possible.
Mel
Hi! May I ask how you knew that the babesia was in your kidney? Thank you!
Hi . I was just reaching things on the Internet and came across this article . I have Lyme , bartinella , and babesia . I don’t know if I was reinfected or if it came out from 19 years ago . ? But I have it . I have a feeling it came out 3 years ago when I had a lot of stress from loss of job and Covid happened . I was misdiagnosed again like I was 19 years ago . I was told it was in my head . Like they told me again . Till I found my llmd . And he tested me and found it . After having to endure severe pain coming off of pain meds and phyc meds I was put on . Because of misdiagnosis, I am now having severe herx reaction . I am taking bolouke and Courtem right now . But I am 2 weeks on it and I am having severe pain herx and scared to death . If anyone can relate or be there for support I would be grateful. Thank u
I’m so sorry you’re going through this! I am going through similar (severe herx reaction to Lyme treatment). Years of misdiagnosis, so much pain. It’s scary to experience this and I’m praying for you that it is getting better day by day.
This is exactly what I’m going through! After four years of progressive symptoms, thousands spent in tests and specialists, they finally tested me for Lyme, and surprise I’ve had it before and I have an active infection now. Years of asking myself “Am I crazy?”. Years of doctors looking at me like I am. I knew by the time my heart was getting worse there was something seriously wrong. Lyme slowly took away my life, my socialization, and now 2.5 weeks of Doxy I not only have the symptoms I’ve had but they are tenfold and are accompanied by new ones! I can barely walk at times. Why doesn’t anyone talk about this? Why is this a big secret causing us to feel crazy and all alone? I’m sad for the patients who suffer because of the lack of information out there. I told my PCP how awful this is (muscle spasms, so much pain in my joints and muscles, my knees are now swollen) and she said it’s probably not the Doxy/die off. Throughout all I read it’s definitely the Lyme die off. Yet doctors don’t know or believe this? My heart goes out to all suffering from this <3
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