I had my first appointment with my new doctor on December 1st. I told him what I just told you and he gave me four possible reasons for the slight backward slide and two possible options for moving forward:
Potential reasons I was sliding backwards:
1. We simply didn't treat long enough and the Lyme and coinfections are still active.
2. Perhaps we were on the right track but the combination of antibiotics that I was on didn't bust open the cysts that the bacteria form to hide in, so as soon as you stop treating they come crawling back out.
3. Perhaps we did treat long enough and I'm experiencing "Post-Treatment Lyme Syndrome," which he said he firmly believes is a real thing... Not in the way that Western medicine refers to it (Post-Treatment Lyme Syndrome in Western medicine= You were treated with a short course of antibiotics, which should cure you, but you still have problems. There is no known cause or cure. They must be in your head. Seek psychiatric help), but instead meaning that you have treated, you have seemingly successfully treated, and your body is still healing from the damage the Lyme and co's have done to your body. This could take some time to heal (nervous system, hugely) and over time symptoms should continue to diminish, although a few may stick around from permanent damage.
4. I could have exposure to environmental toxins that are keeping me from completely healing.
Possible options for moving forward:
1. Jump right back in on antibiotic treatment because it sounds like a slow relapse. We could do oral, injectable, or IV antibiotics.
2. Hold off for the next month and see how things change, and in the meantime continue treating with just herbal tinctures and supplements.
-In either case, also check for possible environmental toxin exposure (i.e. mold).
At the time I was reluctant to jump back in on antibiotic treatment. I think he would have preferred IV, but no matter which route we took, I didn't want to do it again. This is only because I was holding out hope that over the next month things would start to get better again... Or honestly, that even if they continued to get worse, then we would know for sure that antibiotics were a necessary option again.
I continued on just a Bartonella tincture and my usual supplements from December 1-January 14. He did add in so many new supplements that it pushed me to over 40 pills a day. I hated that (I still do...) and it seemed insane to be taking that many things, but I understood his reasoning and liked where he was going with it. The supplements he added are specifically to bind and remove toxins from my body, and to aid in immune support. Both are things I really need. Lyme leaves a boat load of endotoxins in your system, and the medications leave who know's what behind. So, 40 pills a day it is.
Throughout December I still felt pretty well, overall. So much better than I'd been in so long. But as I looked back over my daily "health/symptom journal" for December and the first half of January, I noticed there were way more days than I realized that I'd written that I'd had some pretty rough days, or at least parts of days. Even more symptoms were starting to creep back in, and the severity was increasing a little bit. Still not to the point where I was thinking "this is bad, I'm relapsing," but reading my notes on January 14th was definitely a slap in the face to wake up and realize what was happening. I don't know if I was in denial or what. I just so didn't want to get worse again or to let myself even think for a moment that I possibly was. For some reason I thought I could keep it in check with mind-over-matter... Silly me, I know how Lyme works.
More backward slide:
On January 8th I had an entire day where I was bed-bound. Unbelievable headache/neckache/jawache; feeling suddenly flushed, fever-ish, chilled and nauseous; sensitivity to light and sound; feeling of heaviness upon standing and immediate weakness... Started the moment I woke up at 8am and lasted until 12am that night. I've experienced this many times. I knew it wasn't particularly a good sign, but excused it as a random bad day because although I stopped antibiotics, we were still treating with herbal tinctures.. So herx reactions were "allowed." Mind you, I hadn't had a day like that in a long time, so I should've known. Then the following Monday I got one of those horrible cramps... in my chest (aagghh), while I was teaching (aaaggghhh), that was so terrible I couldn't hide it if I tried. I did try at first. Then my student turned to me after asking a question and not getting a response, to find that I had tears streaming down my face and was grabbing my chest. She was so sweet and I was so thankful for that. I'd never had that happen during a lesson to the point that I couldn't hide it. I excused myself to our bedroom where Tyler was studying and burst into more tears until it passed then pulled myself together to go back out and resume her lesson. Ugh. Over the next few days I had an increase in traveling body aches and pains; more headaches; the weird thing were my vision rapidly shifts from left to right and back, like you're fast-forwarding a movie or something; more twitches; big heart flips; crawling sensation on my scalp; tingling in my left thumb...
January 14, 2016 appointment:
My appointment on January 14th was good for me. I hate change. I was not happy to be switching doctors at this strange point in my treatment, but this new doctor pulled through for a second time and I am really thankful to be working with him. Upon reviewing my December 1-January 14 symptom log, with special attention to the previous week in particular, we determined I was slowly relapsing, and that I could continue slowly relapsing for a long time, or I could wake up one day back where I was a year ago. Those are not options. This time I wasn't reluctant to start on antibiotics again (although I am really bummed that I have to). He started me back on 1,000mg of Ceftin/day and 1,000mg of Clarithromycin/day. These antibiotics target the spirochete form of the bacteria. In a month or two he plans on switching out the Ceftin to something else and adding in a 3rd antibiotic to bust open the cysts that the bacteria form to hide in.
He really wants me to do Major Auto-Hemo-Therapy (MAH) once a week for 12-15 weeks... This means they would draw some of my blood, mix that blood with ozone, then run it back into me via IV while simultaneously treating it with a UVB light. He says he has a great success rate with this treatment. It's also not covered by my insurance because it's performed in-office (out of network... naturopath) and is an "alternative" treatment. This would be something like an additional $650/month, out of pocket. We just can't afford to add that, so I chose not to do it and to "wait" until we're magically endowed with an additional $2,400. Sooo until then... Le sigh.
He recommended doing IV hydration in addition to the MAH therapy, but said it wasn't necessary if I treated at home by adding salt to my water. So I'm doing that... Kind of. The first time I did it, it made me sick for the following 4 days, so I've been afraid to try that again. He said that the skin on my forearms looked "muddled," meaning you couldn't clearly see my veins... Meaning that there's a problem with blood flow/circulation, which is common in people with low blood pressure, because there's not enough pressure to force the blood to pump through your veins properly. Makes sense. The goal here is to increase blood flow/circulation. I'll try to get back to adding salt to my water in the next few days.
Lab Results as of January 14:
-My ferritin levels were really low again (iron absorption). He wants me to do green veggie smoothies 4 times a week to help increase my ferritin, so I'm doing that. Every time I stop supplementing with iron, my ferritin goes right back down again. We already eat a ton of green veggies, good meat, a ton of beans and lentils... Hopefully the addition of green smoothies will help make a dent?
-My white blood cell count was on the low end, indicative that my body is fighting disease (Lyme...).
-My blood glucose level was on the low end...
-My BUN/Creatinine ratio was on the high end.
-My Alkaline Phosphatase was on the low end.
-My Pregnenolone was low.
-My Progesterone was low.
-My CD57 result was 32. If you remember reading about this in previous posts, this test is not used to diagnose Lyme, but is used in support of a Lyme diagnosis. A healthy number is over 300. 200 is a "safe zone." 60-100 is the "at risk" zone. 0-20 is "severe illness." My number back in August, 2014, before we started treating was 14. My number when we re-tested in December, 2014 (after treating for a few months) was 9 (serious strain on my body)... My number in December, 2015 was 33. It's gone up, woo hoo! Still indicative of the fact that my body is fighting hard and under major stress. We still have a lot of work to do to get that number way up, but I'll take that increase from 9 to 33!
Ending thoughts:
I'm not feeling too bad. I'm still doing way better than I was before and I am unbelievably thankful for that. When people ask me how I'm feeling lately I say "pretty good" or "not too bad," and I mean it. We'll keep chipping away at these little bastards and I'll get to remission. I know I will.
