Meds, Round 3

Course change. I insisted in the fall that we test for Babesia and Bartonella, and my IGenex results finally came in just before the holidays. Turns out I have Bartonella quite clearly, and maybe Babesia (on the borderline between having it and not).

So we’ve stopped the Doxy and switched me over to some Bartonella-targeted meds.

  • Minocycline
  • Clarithromycine
  • Rifampin

I’m also taking some stuff for fungal infections in my gut… specifically just starting on 3 weeks of treatment with Itraconazole.

I was surprised about the results, given the tiny red dots that I have on my torso are usually a symptom on Babesia, and I didn’t think I’d been having many Bartonella symptoms. But, I new doctor I am starting to see as an alternative POV did support the diagnosis of both the diseases based on his obsvervations. So, who knows.

Honestly I’m finding this illness to be a bit boring and tedious. I can’t even get the energy to post more here in my blog about it. Mainly, I just don’t feel like I’m seeing any changes, better or worse, as a result of my treatment attempts. The herxing seems to have mostly subsided, and my pain is just a steady and annoying fact of my life. I know I need to be patient and let them run their course… but how do I know I’m not losing time with ineffectual treatments, as I sit here assuming they are working?

At any rate, the most exciting thing aside from getting new meds is that I upgraded my pill case to a larger size. 💊 I’m taking so much medication right now (in addition to supplements), they were getting crushed in the other case… But perhaps this is just a sign of old age, haha. I mean… my 40th is right around the corner. Isn’t a bigger pill case simply a rite of passage?

Oh also, we decided that we’re going to convert one of our half-bathrooms in the house to an infrared sauna! The space has already been demoed and the panels have arrived, but we need to have some plumping and electrical work before the installation can start. That should be super cool once it’s up and running. I’ll try and post some pictures of the process.

As I mentioned in my last post, I really like using an infrared sauna for detox — especially when I’m on so many medications. I feel like it helps get all the nasty shit out of my body faster. If nothing else, it’s meditative and the warmth feels good especially during cold, winter months. I love ❤️ the idea of being able to start every morning out spending 20 mins in a sauna after rolling out of bed!

Meds, Round 1

In mid-August, my doctor started me on two herbal drops as a pre-cursor to my IGeneX testing… she wanted to do what she called a “challenged” test where you start treatment beforehand in hopes that it bumps up anti-bodies in the system making some of the strains easier to detect.

The drops I’m taking are:

(links are below to the manufacturer’s website)

I haven’t noticed much of a change other than improved sleep and better consistency with my poo (I’ll spare you details on that). But I also tweaked my thyroid meds at the same time to add in T3 to my NDT… is the better sleep because of the drops or the thyroid? I will assume the poo is better because of the drops at least. So… I think this is good. It’s not making me feel worse. In this game, the absence of bad is good.

Upon diagnosis, she started me on Lauricidin. It’s basically some derivative of coconut oil that comes in these tiny little pellets that you swallow with water. I’m taking this for my HHV6 infection though, not for the Lyme. I’ve been on it for 6 days, a low dose to start (1/4 scoop). Tomorrow I get to increase my dose a little, and will do so for the next ~3 weeks until I reach a “full scoop”.  Verdict after 6 days? Not noticing anything.

We’ll start antibiotics in mid-October after I get through a work conference where I have to give a presentation. She didn’t want to risk me feeling terrible during that period (and there is a risk that the antibiotics will make me feel terrible… it’s called having a Herx-a-something reaction…)

The Jarisch-Herxheimer reaction –often shortened just to “Herxheimer” or “herxing”—happens after you start antibiotic treatment for spirochetal infections like syphilis, Lyme disease, and tick-borne relapsing-fever.

https://www.lymedisease.org/lymesci-herxing/

I hope since my case seems mild I won’t ever have these reactions! But we shall see. Only way to find out is to start taking the meds and crossing my fingers.

So scientific. 😉

 


From Nutramedix, who manufacture my herbals:

Prequel

Here’s my Lyme story “origin”.

Please note, that this is not my “full” story — I have a pretty neat life outside my health and Lyme diagnosis… But I’m not starting this blog to go into those details. 🙂 I just think this is important to call out because sometimes society looks at people who are “sick” and erases all the other aspects about them that make them Human. We have to look past the diagnoses and at the people.

But I digress.

Let’s back up a tiny bit…

Last year (2017), I simply wanted to figure out a few things that seemed off, in the spirit of getting healthy before I get old. Like… after a lifetime of normal periods, why was I starting to get them every 2 weeks? Also, why couldn’t I lose weight despite a year of strict Keto and moderate exercise (9 years after my daughter was born, and after 30 years of being thin without trying)?

I started with my traditional Gynecologist and Primary Care Physician. No offense to “Western” medicine, but they were useless. They either said everything was fine, or disregarded me entirely.

I turned to naturopathic/functional medicine. Enter doctor #3. She helped me think about things like hormonal imbalances and adrenal fatigue, but we mutually broke up because she didn’t know what to do with my weird labs. I was too “complex” for her.

I found a 4th doctor, also functional medicine, and she was great. She took action quickly. Hypothyroid diagnosis? Check. Low Progesterone and DHEA? Check. Stage 2 Adrenal Fatigue? Check.

I would have continued to work just with her, happily, except that my arms started to do the “numbing and tingling” thing again. A year before, I had had this happen… laying in bed, flat on my back, both of my arms would feel like they’d “fallen asleep” (pins & needles). It made no sense. How could I have my circulation cut off when I’m not lying flat on top of them? Eventually it went away so I didn’t think much of it… until it came back again. With a vengeance. Not only did my arms feel weird, my wrists started to ache and my feet started to feel swollen all the time. Sleep quickly went to shit.

My doc wasn’t really sure what to do… and neither did I. I had tried some massage therapy and chiropractic work to no avail. I was pretty sure there was not a skeletal/muscular issue at the root.

This mystery got me to start question things… like WHY am I suddenly hypothyroid? Was my Adrenal Fatigue was really due to stress? Am I going into menopause in my 30’s? Is this just middle age? Ugh.

I was starting to feel a bit crazy. Maybe it was all in my head?

Then I had a visit from an old friend who herself has been battling Lyme for several years. We got to talking and she asked me a simple question that I couldn’t shake…

“Have you ever been tested for Lyme?”

Fuck. Once that was out there in the universe, there was no taking it back. I had to know.

I started reading about Lyme symptoms, and peeling back more layers of my health “onion.” Once I took stock, I noticed how many mysteries I had endured throughout my life as a seemingly healthy child, adolescent, and then adult. They may not all be due to Lyme, but I have to think many of them were… The pieces started coming into focus.

Why did I get that strange cloudy mass in my eye as a 4th grader that stumped my eye doctor? Why did I have that extreme allergic reaction on my face in college that has never appeared again since? Why was I hospitalized with a “mysterious” pelvic infection in my twenties? Why did I get a “mysterious” swollen, painful lymph node in my 30’s? Why did I get a heart palpitation for a few years in my late twenties? Why do I get eye twitches so easily? Why am I constantly congested and dealing with post nasal drip? Why does nothing seem to help my psoriasis? Why did I get strep so regularly as a teenager? Why did I get mono? Why did I suffer through a period of extreme nightmares in my early thirties? Why did I endure two years of night sweats and insomnia? … and all that on top of the aforementioned issues.

I asked my doc what she thought, and she said, “It’s a good theory. But I’m not the right person for you to work with on this.” She shared some names of doctors she recommended, and reassured me she’d support me however I needed it.

Now I have my 5th doctor and my recent diagnosis… It might be “borderline” by some standards, “negative” by others (like the CDC). But it’s good enough for IGeneX, doc #5, and me.

  • IgM “Negative”
    • Positive (+) band 23
    • Indeterminate bands 41, 93
  • IgG “Positive”
    • Positive (+) band 18
    • Positive (++) band 39
    • Positive (+) band 41
  • Plus sprinkle in a few co-infections…
    • Mycoplasma
    • HHV6
    • Epstein Barr

I’m taking some herbals now, and will be starting antibiotics in a few weeks. I’ll write more about what little I know around meds and treatments in the future.

I don’t know if dealing with this will eventually correct all the symptoms that triggered this wild goose chase in the first place — but it’s worth a shot! I just want to get back to feeling like me again.

So yeah. That’s how I got here.