another detour

Alright, about my appointment on Monday…it went well and was productive, which I’m thankful for. It was incredibly draining and overwhelming too. I’m glad Spencer and I work well with our doctor and we’re all on the same page.

All three of us concluded that Cipro (the antibiotic I've been on for the past month to treat Bartonella) just isn’t working for me. I so wanted it to work, but it wasn’t…no improvement whatsoever and I was getting sicker and sicker. It was also increasingly evident that my liver was really struggling.

So, my doctor pulled me off of Cipro. No antibiotics for the time being. I’ll be taking various herbs, focusing on detoxification, and giving my liver a break from drugs.

My doctor is considering putting me on Rifampin in the future, as she feels that my Bartonella infection is severe enough to warrant that strong of an antibiotic. That kind of freaked me out, but I’m thankful she’s willing to do what it takes. She has had quite a few Lyme patients with Bartonella really improve with Rifampin.

She is increasingly concerned about the severity of my Lyme and Bartonella infections and says that I NEED aggressive antibiotic therapy in order to get well, but until we can figure out how to better support my liver, we need to stay off antibiotics. We're hoping that by May, my liver blood work will indicate improvement and if so, we'll consider starting up a low dose of Rifampin.

A bit of background to explain my liver issues – most Lyme patients have trouble with their livers at first during antibiotic treatment, but we already know I have some underlying issues that further complicate things…if medical details cause you to glaze over, I suggest you skip the following italicized portion :)
Thanks to a genetic test I had done years ago (pre-Lyme diagnosis), when my family was desperately trying to figure out what was wrong with me, we found out about genetic issues that significantly cripple my liver’s ability to deal with toxins. Basically, I’m missing a whole gene crucial to the process of conjugating glutathione, an antioxidant that is vital in helping your liver get rid of toxins. The gene flat out doesn't exist in my body. Quite a few of my other genes responsible for phase I and phase II detoxification are also significantly altered (polymorphisms), leaving me, as one medical practitioner called me, “a horrible detoxifier.” I’m glad we have this information, but golly, I have the wrong genes for someone in need of aggressive antibiotic therapy! Flooding my body with antibiotics and endotoxins from the bacteria being killed off isn’t going to do me any favors if my liver can’t handle the toxin load.

I’ve begun doing a sulphur detox with a supplement called Sparga, which should help me better tolerate and utilize glutathione and n-acetyl cysteine supplements, both of which are crucial in helping the liver deal with toxins - I won't take either of them until I finish the detox. I had been taking an oral form of glutathione, made to be readily absorbed via liposomes, but we weren't seeing any benefit. We'll try it again after I finish the sulphur detox and if we still don't see much benefit, we'll explore other ways to supplement glutathione, since my body can't make enough on its own and blood tests indicate that I'm deficient.

In the mean time, I'm continuing milk thistle, alpha lipoic acid, lots of epsom salt baths, sweating, and some other not-so-fun approaches to aid in detoxification.

As we went over my symptoms and talked about the patterns I’m beginning to notice, we both agreed that Babesia (another Lyme co-infection) is something we need to strongly consider despite the negative blood test. The tests aren’t that accurate, so you really have to go by symptoms in order to rule it out. I’m experiencing weekly flares of severe symptoms, which is similar to Babesia’s growth cycle. In a couple weeks, I’ll begin taking an herb called Enula, which supposedly helps fight Babesia– we’ll be looking for a change in my weekly symptom flares to help us determine whether Babesia really is an issue that needs to be addressed.

We’ll continue to slowly fight Lyme with the herb Cat’s Claw.

We’re also going to be focusing more on fighting systemic yeast, since antibiotics can cause major yeast overgrowth issues – I’ll be taking a supplement containing caprylic acid, garclic, and oregano in addition to the candida diet (no sugar, minimal carbs) that I have already been following for quite some time.

I feel like we made wise decisions and ultimately am at peace about what we’ll be doing over the next six weeks, but I am also discouraged that we can’t treat as quickly or aggressively as I’d like. I have been so miserable and debilitated for so long, and it’s difficult to hear that an already slow treatment process has to go even slower – how I long for relief from physical suffering. What an exercise in trust and patience this illness is!

We keep reminding ourselves that God IS in control of all of this - He knows the exact state of my struggling liver, the severity of our symptoms, the depth of our heartache, and the placement of every single destructive Lyme spirochete embedded in both our bodies. Nothing is too small or insignificant for Him to miss. He has proven Himself faithful to care for us over and over and we trust that He will continue to do so.

This is not the road we anticipated being on - it has been a rough, dark, lonely journey - just last night, broken and in tears, I told Spencer I didn't like the road God has us on. But, despite my dislike of this particular path, I know He graciously placed us on it and that it IS for our good. "He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?" (Romans 8:32). How could I doubt His loving kindness? Once again I quote J.C. Ryle:

"See in every sorrow and trouble of your earthly pilgrimage the hand of Him who gave Christ to die for your sins! That hand can never smite you except in love! He who gave His only begotten Son for you, will never withhold anything from you which is really for your good. Lean back on this thought and be content. Say to yourself in the darkest hour of trial, ‘This also is ordered by Him who gave Christ to die for my sins. It cannot be wrong. It is done in love. It must be well.'"