A Diagnosis

A Diagnosis

It’s been over a month since I last posted about my health struggles. My mental health deteriorated quite a bit during that time as well, which is why I think I couldn’t bring myself to write anything for the blog until now. I’ve been struggling with increased anxiety, overreactions to stress, and crazy up and down emotions. Whether this was the sickness or just a response to waiting for answers, I can’t say — it was probably a mix of both.

This post itself, I have a feeling, isn’t going to sound like me. I feel robotic typing about all of this. Thinking about everything is overwhelming, emotional, and causing a lot of anxiety. But for those of you who have been praying and messaging me with such sweet, encouraging notes, I wanted you to know what’s been going on for the past six months and what lies ahead.

First, I wanted to share a list of symptoms, but I want to be clear that I don’t share this to gain sympathy or add drama. One of my intentions in blogging about my health to begin with has been to educate others and maybe help someone else out there like me who is looking for answers.

My current symptoms in a nutshell are:

  1. Fever
  2. Joint pain and stiffness
  3. Extreme fatigue
  4. Increased headaches that are burning or feel like sinus
  5. Intensified migraines
  6. Severe nausea
  7. Body temp regulation issues
  8. Cold and numb sensations
  9. Stiff neck
  10. Sleep issues — insomnia, restless sleep, sleep paralysis
  11. Dizziness — extreme episodes where I feel like my brain is sliding and I’m going to pass out
  12. Brain fog
  13. Constant sore throat
  14. Difficulty swallowing
  15. Blurred vision/sensitive eyes
  16. Anxiety/panic attacks
  17. Muscle twitches/tremors
  18. Depression
  19. Mood swings
  20. Tender subcutaneous points
  21. Itchy skin
  22. Weight loss
  23. Taste bud changes
  24. Irregular appetite
  25. Shortness of breath
  26. Irritability
  27. Pressure and ringing in ears
  28. Foot pain, particularly in soles of the feet
  29. Heart palpitations
  30. Overall feeling like I’m coming down with the flu

Things became so bad at the end of last month that I bought a cane to help me get around on flare days — days when the fatigue is extreme, the joint pain makes it hard to stand up, and dizziness has me feeling like I’m going to pass out instantly.

I was beginning to feel like there was no end in sight. Using a symptom tracker over the past month proved to be a grounding daily practice, but also showed me there is no rhyme or reason to my symptoms. One day I can feel well enough to go out for an hour, the next I’m in bed all day. I can be up to do something one minute and five minutes later fall asleep on the couch. Not to mention nothing relieves symptoms for more than a few minutes.

Coping with something you have absolutely no control over and can’t explain why is exhausting.

I have never received a concrete diagnosis in my life. There are a few things tacked onto my medical chart, but they hold question marks above them. There’s never been solid proof of anything, no blood work that shows definitive answers, and anything I have is always irregular or atypical.

But now, for once in my life, I have a true diagnosis.

 

I have Bartonellosis.

 

Bartonella is a bacteria that lives in your blood vessels and attacks your red blood cells and tissues. Commonly misrepresented as being solely a co-infection of Lyme Disease, Bartonella is its own infection and, while it can be spread by ticks, it can also be spread by cat scratches, fleas, mosquitos, and transferred in utero. It can cause damage, sometimes permanent, to your nerves, heart, and brain.

Testing from IGeneX, a lab that has 25+ years experience testing for tick-borne illnesses, showed a positive result for Bartonella henselae, or cat-scratch disease, and indicated I probably have another form of Bartonella lurking as well. While we can trace symptoms back to multiple times and can’t say for certain when everything started, our consensus was that I have been struggling with this for many years, possibly 16+.

The good news? We know what it is. We know how to treat it. And according to my doctor, my age is a benefit as most my age, even if they’ve had it for years, bounce back after treatment.

However, there is also a question of whether or not I have underlying conditions. Bartonella tends to mask other conditions, and even though my tests for Lyme and Babesia came back negative, there’s still a possibility those bacterias could be lying dormant. Treatment for Bartonella will awaken any hidden bacteria, so I have to keep an eye out for new symptoms during treatment.

So, what is treatment?

Treatment…is tricky. As a “best-case-scenario,” treatment is 6-8 weeks of two antibiotics coupled with supplements, and then a 6-9 month recovery time supported by more supplements.

Sounds long, but okay, right? Wrong. 

Unfortunately, in order to get rid of the bacteria, you put your body through a detox process. While detoxing bacteria such as Bartonella, you can  will experience Jarisch-Herxheimer reactions, which are a reaction to endotoxin-like products released by the death of harmful microorganisms within the body during antibiotic treatment. They are miserable and potentially dangerous in some cases.

Everyone reacts differently, but what I can expect is my symptoms to worsen, to feel like my body is shutting down, and like I have the worst case of the flu. These coupled with the fact that my body has never handled any sort of detox process well and my system hates antibiotics (I have little hope the ones I’ve been prescribed will be something I can see through the full 6-8 weeks), I’m looking at being very, very sick. Herxheimer reactions, or “herxing,” can start about 3-4 days after treatment has begun and last anywhere from 3 days to several weeks, and from there sometimes come and go.

I am going to have to watch my body carefully through all of this. Watch for new symptoms, try to determine if I’m having a detox reaction or medicine reaction, watch what I eat (no gluten, dairy, or sugar), and keep an eye on my mental health.

Most people with Bartonella infections recover completely, though about 5% continue to have issues sporadically for the rest of their lives. I have no idea what the future holds with this, only that I need to keep my headspace centered around that all of this will work and I will be healed by the end, or I may be tempted to give up.

I’m attaching a couple of short articles about Bartonella infections and Herxheimer reactions if you would like to learn more. Unfortunately, Bartonella is not a commonly known infection and disease — you’d learn more from a veterinarian than from most doctors — and so there aren’t many articles out there that talk about chronic infections, as they themselves are only just beginning to be recognized by the medical community.

I can’t stress how smart of a choice it was to see a Lyme Literate doctor and how blessed I am to have found one fairly locally. With every fiber of my being I recommend contacting an LLMD if you are at all suspicious of having a tick-borne disease or one of its common co-infections. Many doctors, especially those in Infectious Disease, are turning a blind eye to the seriousness of tick-borne illnesses and not recognizing that these conditions can turn chronic and need more than a 2-4 weeks course of antibiotics. The CDC-approved tests for tick-borne illnesses are only 40% accurate at their best, and insurance companies also govern how doctors will treat their patients. It’s a messed up system, leaving a lot of sick and hurting people with no options.

It has been difficult for me to be gracious in my thoughts towards the previous doctors who told me this was all in my head or caused by anxiety. I want to wave my Bartonella lab results in their faces. I know it will gain me little and do nothing to change their medical beliefs, but I also feel sick thinking what would have become of me if I had listened to those doctors rather than my own body. But for now I will content myself with the fact that someday, hopefully soon, these doctors will have to recognize the seriousness of these diseases and start treating patients not only in the correct medical way, but also with respect.

More About Bartonella:

https://www.columbia-lyme.org/bartonellosis

https://www.lymedisease.org/lyme-basics/co-infections/bartonella/

More about Herxheimer Reactions:

https://globallymealliance.org/what-does-it-mean-to-herx/

https://rawlsmd.com/health-articles/lyme-herxheimer-reactions-your-guide-to-feeling-good-again

 

But truly God has listened; he has attended to the voice of my prayer.

Psalm 66:19

3 Comments

  1. Eileen Marsh
    June 27, 2019 / 2:17 pm

    Your last paragraph…I think most of us would have difficulty being gracious. These are raw, honest feelings you are sharing with us. Thank you.

  2. Paula Jordan
    June 27, 2019 / 5:06 pm

    Sarah, you are an inspiration! You haven’t given up even though you have been through some really rough times! I am guessing God is going to use you to help those doctors get more educated in the tick borne diseases!!
    We continue to pray for healing!
    Paula

    • Sarah
      Author
      June 27, 2019 / 7:50 pm

      Thank you for your prayers!

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