Thursday, January 23, 2014

Cysts: Busting Out

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.


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."


Wednesday, January 22, 2014

A Quick Catch Up -

Wow, where has the time gone, right? I can't believe I haven't written anything in four months but thus is the life of a Lyme patient. Sometimes we're the windshield, sometimes we're the bug ... but really. If you're the betting sort, you can safely place your money on the bug (yes, that was a thinly veiled attempt at parasitic humor.)

It's been a hectic, busy, crazy four months for someone who rarely leaves the house. In a nutshell, and to be expounded upon later, here are the haps:

1. In September I was able to go to CA for a week and be with all four sons and wives/significant others to watch The Drummer wed The Designer. Truly a magical affair with little twinkly lights, amazing natural floral arrangements, to-die-for wedding cake, the woods, the breeze, and two people madly in love. It was awesome.

And then there was my nine month old grandson affectionally called Dug. I'd wax poetic about him but I'm biased. Let's face it, he is the current most adorable baby in the universe. About 30 years ago (plus or minus a few years) his father and uncles owned that title, but right now Dug is King.

2. Cyst busting. I knew it was coming and I knew it would begin when I got home from CA. It's kind of a Lyme chemo explosion in one's brain. All those nasty cysts get popped open and it rains down spirochetes into one's blood stream where a whole host of antibiotics and herbals gobble them up.

This will be its own separate post. I have this strange ability to both be able to participate in something and observe it. While the participation was not "fun" in any sense of the word, the observations were fascinating. Downright spirochete blowing.

3. My computer died a horrid death. In my quest for healing I drink as much lemon water, apple cider vinegar water, and plain old regular water as much as possible. It was with horror that I watched the lid of my bottle pop off in slow motion and dump lemon water all over my keyboard. Despite my quick action and laying on of hands, it was not healed. To fix it would be half the cost of a new computer and yeah, I can still do math etc.

4. The holidaze. A separate post.

5. The snow storms. Ok. No extra post needed. Anyone who watches the weather knows what happened near Lake Michigan or, shall I say, down the street. In fact, I'm in white out conditions as we speak ... all snug and warm with all liquids far, far away from my keyboard.

6. I have a new computer and this makes me very happy. Blessed, in fact.

Until I can figure a way to get my nifty little FB timeline words of wisdom here, I'll leave you with Dug and his two most adoring fans: Grandma Sue, and his Savta (moi.)