Wednesday, May 2, 2012

Everything I Have: Updated

Since I last blogged, I've seen both my Lyme-literate endocrinologist and a notable Bay Area ART expert, which can only mean one thing — yes, I've got some new test results, new treatments, new frustrations and new successes to share.

We've made three new discoveries: a blood clot disorder, a cortisol deficiency, and a new co-infection — Bartonella. (Note that while they're newly discovered, they're not in fact new conditions.)

Because my blood is so thick and clotted, I'm at increased risk of stroke or heart attack (risks that are further increased by my elevated homocysteine levels per my genetics). My poor circulation — brought on by my sludge-like blood — could also partially account for why aerobics have always been near-impossible for me. Apparently, the vast majority of Lymies have this condition. 

To treat it, I'm giving myself two injections daily of heparin, a blood thinner. I immediately noticed an increased energy level when I started the heparin shots. Three or four days after I started it, I had one of the best days I've had in several months — I was able to go to the mall, practice music with my band, and have dinner with a friend all in one day! Unheard of!

But the days since then haven't been quite so super-human, due to a combination of wearing myself out, possibly herxing from the heparin since increased circulation allows my medications to work better at killing the bugs, and lastly, side effects of the new cortisol medication (see below).

To address the cortisol deficiency, I just started Cortef. In fact, I've only taken two doses as of right now. But instead of making me feel calmer and less stressed, it's having the opposite effect, which can happen when your dose is too high. So I'm going to try decreasing my dosage until I find the right level for
me. Because there is no "standard" dose of anything for anyone. 

The Bartonella diagnosis actually came as a huge surprise to me. It's the most common of Lyme co-infections, according to ILADS, but it's always turned up negative during past blood tests, ART sessions and muscle testing. I really didn't want to have it (in fact, I don't want to be adding anything to my ever-growing list anymore) but I guess it's not really my choice.

This time, it was definitively positive during my ART session. And since the ART practitioner is one of the best of the best (and even double and triple checked when I expressed my surprise), I believe it. It turns out that sometimes the less dominant co-infections can appear negative for some time until they are somehow triggered or rotate into dominance. 

On the bright side, my Babesia is now in remission! I no longer test positive for it at all! (Doing the happy dance). Sure, it (and everything I have) can come back down the road if I don't make proper lifestyle choices — hence the "remission" and not "cure". But at least for now I can stop taking A-BAB and artemisinin.

It's also possible that, now that Babesia is in remission, the Bartonella had an opportunity to finally enforce dominance and test positive.

On another note, I can't remember if I've mentioned yet that I've been taking the Cholestyramine for about a month now (I blogged about my intent to start it, but I don't think I've shared my reaction to it yet). This is the medication that, if you recall, works as a toxin binder and also helps alleviate mold symptoms — to help with my mold-susceptible genetic mutations. Well, so far I'm on a low dose, but I'm tolerating it well, and ART confirms that it's effective and working!

My other genetics treatment — for methylation — includes RNA drops and methyl donor supplements, and I am ART testing well for that, too.

We're also still working on correcting my hypothyroidism, as it appears I'm still hypothyroid on one grain of Armour.

But at least my parasites are down in numbers, my candida is taking a beating at the hands of my awesome probiotic supplement, I'm on a great detoxification and lymphatic drainage regimen, my heavy metal toxicity is lower, my EMF (electro-magnetic field) exposure is lower (thanks in part to my deactivation of Smart Meters in my house), my hormones are getting some much-needed balancing, and most recently, my clotted blood is finally flowing as it should. Overall I'm seeing some slow but steady improvement.

Yes, I still test positive for active Lyme (borrelia), but I'm not surprised, considering it was late-stage before we started treatment. I'm continuing with my antibiotics and anti-microbials for the active Lyme infection.

Bottom line: generally speaking, I'm in a good place. Things are working. I'm on a good plan. I'm feeling hints of improvement here and there. By no means am I healed yet, but I'm moving in the right direction!


  1. Hooray for moving in the right direction!

    Can I ask how you put your babesia into remission!? I feel like it is my biggest offender right now.

    1. Hi Sebnova, I put my babesia into remission using artemisinin, A-BAB, and samento. Good luck :)