For the uninitiated, Borrelia burgdorferi (aka: Lyme) is one sneaky little bacteria. Genius, in fact. It will strike any part of one's body any time to avoid its own death via treatment. To wit, we get crazy "sick" while on treatment and it truly does get worse before it gets better. TRULY worse. Really. Believe me.
Lyme has three forms: spirochetes, cell wall deficiency, and cysts. The first two are easily addressed (ha!) with antibiotics (ABX for those in the know,) but cysts require their own special artillery used in conjunction with some cell wall ABX.
A little bit about the cyst:
These are dormant bacteria and do not cause symptoms. They can survive pretty much anything including antibiotics, starvation, pH changes, hydrogen peroxide, temperature variation, and most other adverse conditions.
The ONLY time it will convert back to spirochete form is when conditions are favorable.
ENTER THE CYST BUSTERS!
Traditionally the two meds of choice have either been Flagyl (Metronidazole) or Tindamax (Tinidazole.) However, Evi Sapi has done some exciting research that proves Tindamax to be the absolute preferred choice. Why?
Tindamax kills 90% of cysts AND spirochetes and probably works by an intracellular mechanism. Wouldn't this make it useful in treating cell wall issues as well? But wait ... there's more! Tindamax is the only drug which does a great job on biofilm colonies, too! This is good stuff, Maynard.
It passes the blood brain barrier and penetrates into most tissues making it effective in patients with neurocognitive deficits - neuroborreliosis. (THAT WOULD BE ME!! I have neuro Lyme.)
"What does that feel like?" you ask.
Hell. Which is why most LLMDs work up to it gradually; both to prepare the system to handle the spirochete fall out as well as to spare Lyme Warriors undo pain and torture.
Personally, I was supposed to add it to my protocol at around six months with the goal of two weeks on, two weeks off. I seem to be a perpetually hexer so we added it around the 7th month. I was afraid to even LICK the stuff, but one day after a pep talk from a Lyme friend, and being sick unto death of being sick unto death, I popped one thinking it would either kill me or I'd die fighting. The bottom line was the same, but I'd rather go out as a Warrior. Always. Be the Warrior.
Annnnd, I thought it was going to kill me. Warrior like, my LL Bean men's flannel nightshirt and I crawled into bed an hour after taking one dose and began to writhe in pain. I have a lot of words in me and I'm not sure I have enough for this one. The best analogy I can come up with is "killer bees riding on chain saw conveyer belts." With. No. Off. Switch. This went on for a day. I didn't even have the strength to shed tears. The following week I did NOT increase it to two days. Instead, upon the suggestion of the aforementioned friend, I took 1.5 days ... and only felt like I was dying for two. Encouraged I upped it to two days a week for a couple of weeks. Until I talked to my LLMD.
I think I've probable mentioned elsewhere that I have a girl crush on her. I do. Really. Not only do I suspect she an INFJ (oh, sistah!) but she's that incredible combination of warmth, compassion, genius, creativity, and the iron fist in the velvet glove do-not-mess-with-me-and-I-mean-it. I spoke with the latter that day. Yeah, she did. She told me I had to increase it to three days a week by the time I spoke with her again. Always the compliant patient, I said, "Ok!" and then got off the phone and cried. Then I got angry. "FINE. FINE, Dr. You Know Everything, I will go forth unto my death by your command. Remember me as a Warrior." (Of course this comment occurred only in my head, and now here. I may be a Warrior, but I am not rude.) That week I took three days worth, and I did not die.
By the end of the third day I thought, "HUH! Now what?" So I took a fourth day and then a fifth day. While at a friend's house I took days six and seven. On the eighth day I rested ... and shot her an email. Then a miracle occurred ... my brain worked for an hour. Just one hour but it was enough to complete as many tasks as it took my pre-Tindamax brain a week to accomplish. Someone even called me "smartypants." I was stunned.
A week later I did it again and while I do hurt a lot at night (legs, legs, omg my LEGS) it really wasn't THAT bad. So I shot her another email and she shot me a smiley face and six words: "Two weeks on, two weeks off."
I did it. I actually did 14 days in a row. It exhausted me, my mouth tasted like I'd chewed my way though a landfill, and I just wanted to STOP! Which I did on the 15th day.
So here we are. I'm into my second week OFF Tindamax and my hands are swelling. According to my massage friend I'm "crunchy," which she suspects are toxins settling in my feet (oh why not?!) When I was whining to the aforementioned friend I was told, "Yeah. Told you. Your body misses it."
It does. So Sunday morning when I take my first of 28 doses I'll envision myself popping open brain balloons of cysts and PacMan antibiotics gobbling them up in my bloodstream. I will not even think, "killer bees."
References:
http://www.lymebook.com/top10forms
http://lymemd.blogspot.com/2011/07/everything-you-thought-you-knew-about.html