Sunday, April 5, 2015

And then there's this ...


Somewhere in between my last blog entry and this very moment two things happened: I couldn't remember how to get into my blog AND I started to get better. Contradictory? Not sure. Never sure.

SO. Although heading for remission I still have my fair share of couch days. Today is one of them as I've officially been sidelined for a couple of days by my LLMD. My knees hurt and are swelling and although a symptom of Lyme as well as a herx symptom, it's new to me and I'm on med known for the ability to do tendon damage. WAS on a med known for the ability to do tendon damage. I stopped Friday evening as I'm just not willing to risk it.

The other possible culprit is yoga, which I have been healthy enough to do four times a week since February 1. I spent the month of January in California (I know, the sacrifices I make) helping to love on my son, DIL, two year old grandson and brand-new-in January granddaughter (the first female James in 65 years, I might add.) It was, in a nutshell, crazy. Just lying here in my bathrobe and thinking about it makes me teary ... those people that make my heart swell: my son, my son, my precious, precious son; my brilliant, beautiful daughter in love (I know, corny) who is that rare combination of compassion and feisty (and with whom I feel I can share ANYTHING and be heard); my two year old grandson, Jack, my favorite roommate EVER; baby Luella, or "Wu" as her brother has named her, and YaYe, my DIL's mother, a woman with whom my heart audibly clicked. Oh. Stella Luna. My puppy, Stella, went with me. That was also crazy, but not necessarily in that "isn't life SWELL" kind of way.

My point, yes ... there is a point, is that they live 50 stairs up the side of a mountain. Yes, fifty. I know because I counted them. My goal was to go up and down them once a day and when doing so I tried to be stealth as I did NOT want to be seen as that women-from-the-flat-midwest who can't make it up and down the side of a mountain. So I huffed and puffed in private, absolutely proud of myself each time I did it. After a few days I didn't huff and puff so much. In a few more I could go up and down TWICE a day. Around week three I was noticing some calf muscles vaguely (very vaguely) reminiscent of my running days. By week four I went like Rocky Balboa ... with gray hair, glasses, and a diaper bag.

In any event I felt able to begin yoga after a month of mountain goatery and toddler carrying and it is AMAZING.

I missed going on Saturday and despite the fact that I THINK I could probably go tomorrow, I will do my LLMD's bidding and go on Tuesday (I'll shoot her an email just to make sure.)

I'll need to reread my own blog to see where I left off in Ruth's - Life - Story, but for now life is good. The snow is gone, I saw a robin, and I'm itching to get out in my yard and do some spring clean up (dressed like a dork and wearing tick spray.)

Oh. I turned 60. Happy birthday to ME ... I earned this one. Yes, I bought the t-shirt.






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.

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

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.)


Friday, September 13, 2013

New York: The Farewell Tour - The Graves Revisited



Hmmm. By accident I deleted the first portion of the Farewell Tour. Maybe some things are cathartic when writing but not meant to be read. I'm gonna go w/that.

So. Yeah. I never introduced my traveling partner and "driver," Vito. Vito has seen me at some of my finest moments ... the good, the bad, and the Lyme induced. This trip to NY leaned heavily toward the latter two although we did eat some great pizza (I know this is not "allowed.") Just this past weekend as we drove from his brother's home we were listening to NPR. One of the stories was about all the people a reporter met while hanging out at a NY Thruway stop for 24 hours ... several of them couples. Some "in love," and many just plain road weary. As the reporter said, "the way to test a relationship is to spend long hours in the car together" Vito snorted. Or chuckled. Not laughed. I pretended not to hear him. (Note to Vito: I heard that!)

That evening in the hotel room as I sobbed and wished I was alone, Vito announced he was was going out (probably also wishing to be left alone!) I suggested he go for round two at the great pizza place in town yet I swear, I swear, I SWEAR he said he was going to Walmart (which stunned me as we both HATE Walmart with a mad passion.) So off he went to Walmart and I lay on the couch and sobbed. Then I watched TV and sobbed. Then I took a bath and sobbed. Finally I climbed into my bed and sobbed. I really, really, REALLY had wanted to see my aunt and uncle's graves. REALLY. I felt ripped off. I felt hurt. And mostly I just FELT. Like ocean waves of feelings .. not lapping at my toes or lulling me to sleep. Kind of tossing me up on the shore over and over and over reminding me that it was bigger than I was and no amount of staring it down was going to allow me to "win." All that "feeling" bruised my heart, and the sobbing gave me a headache. Finally I got angry. I mean where the HECK was Vito??? Yes, he's an explorer by nature but how much exploring can one DO in a Walmart? REALLY!? So I texted him, "How long are you going to be at WALMART?" I got one right back that said, "I'm trying to get the key in the lock. What are you talking about?" I did not get out of my bed and open the door for him.

During the Walmart discussion it became clear to me that I was dealing with some Lyme issues. Vito didn't go to Walmart, said he never mentioned Walmart. I believe him ... he hates the place. It would be much more like him to go take photos (which is exactly what he did.) Clearly my brain was not working correctly nor were my out of control emotions. I'll admit to being an INFJ and really good at "feeling" but this was crazy over the top. This was more than tired. This was Lyme brain/emotions at its finest. (Worst.)

In the middle of the night I sobbed on the couch because I hadn't found my aunt and uncle's graves and the likelihood of being in the neighborhood again was pretty slim. So close but yet so far. I sobbed for my memories, I sobbed for my losses, I sobbed because I was tired, I sobbed because I hurt, and I sobbed because I couldn't stop sobbing. Not wanting to wake the sleeping Vito I dragged myself into the bathroom for another bath where I could, you guessed it, sob some more. No, the bath did not help. Still sobbing I sent Vito a long somewhat vitriolic email outlining my hurts. I was certain he would check his email when we got home a few days later.

Shortly there was a knock on the bathroom door and I asked, "WHAT!?" in my very best "isn't it OBVIOUS I'm in the bathroom" voice. Vito mentioned he read the email. Oh. That. Through the closed door I told him I thought he'd read it when we were back home and he made it clear that he checks his email every morning just like I do. Oh. That. Ok. Ugh. Apparently I really HAD hit "send."

He offered to take the day and go back up into the mountains to find the graveyard. I protested that it wasn't necessary and I was FINE! (Vito knows me well. Really well.) After some explaining that he knew I wasn't fine and that he really didn't want to be blamed for my not getting to see my family's graves I relented ... and mentally congratulated myself for doing so because I HATE LOSING FACE. After a couple of false starts we found the graveyard. And then things got good.

First of all, I LIKED the graveyard. It was on a hill (duh) overlooking mountains ... just what I'd want to look at with my spiritual eyes. As we found my Aunt Millie's and Uncle Putt's grave we drove past a grave that said, "Willard" and I realized that another one of my aunts was buried there. I was stunned ... and thrilled that they were all together. My Aunt Millie was glamorous: she went to Julliard, played the organ for voiceless moving pictures, smoked, drank, wore incredible clothes, and drove a new Cadillac every two years in some frivolous COLOR like frosted mint or lilac (we always drove neutral colored cars ... much more sensible.) My Aunt Alma was hysterical. Went to Julliard (where she met my Aunt Millie and they introduced my parents to each other.) Aunt Alma could talk like Donald Duck (a trait shared by my father) and would laugh so hard she'd snort. Who doesn't love a woman who snorts with laughter???

While Vito was busy taking photos of interesting gravestones I was saying goodbye to my Aunt Millie and Uncle Putt. Wrapping things up. Making them all "J" ... nice and tidy. I thanked them for all the awesome presents they sent me over the years (seriously awesome.) I thanked Uncle Putt for teaching me how to water ski and drive a motor boat. I thanked Aunt Millie for being my Aunt Millie ... for letting me sit and watch her parties. For letting me observe her life. For letting me "in" on the high life. Even if was just for 15 minutes before my bedtime.


Then I wandered over to Aunt Alma half wondering if my Uncle Ray was buried there also. My Aunt Alma died when The Lawyer was just a baby and I know my Uncle Ray later remarried in another state. I can't find him and wondered, where do widowed people get buried? With their first spouse? Or second? It was obvious from the grave that he had intended to be buried with her ... yet he isn't there. And, quite frankly, he's too old to still be living.

Perhaps I've mentioned my spiritual vibes before ... I can't remember (Lyme brain.) So in short, about 30 years ago I realized I'm "vibey." I know things I shouldn't. I "hear" things I don't want to know. And (worst of all) I FEEL them in my body. Right. Call an exorcist.
Although they're not BAD things ... they're knowings (for lack of a better term.) I fought them long and hard for several years as it's not rational, and then I gave up. Now when I'm feeling vibey I ask G-d, "just tell me ... what do you want?" Then I do it.

I get in front of my Aunt Alma's grave and feel overwhelmingly weepy. (Moreso than my usual Lyme weepiness.) So I cry. No big deal. Totally reasonable. I loved and love my Aunt Alma. And then "it" happens. I get vibey. So I asked G-d, "What do you want?" Yeah. Ok. To put my hand on her grave stone. Ooooook. Not a totally unreasonable request and nothing "wrong" with that. So I put my hand on her gravestone and say, "Hi, Aunt Alma. Sorry. I've just gotta do this." My entire body floods w/warmth (nice warmth ... not a hot flash, and certainly not Babesia sweats.) I look around. Nada. So I ask, "G-d? Do you want me to just stand here like this?" Apparently so. And I do ...while sobbing wracks my entire being. What is up with THAT? If it was my dad's grave I'd get that but my Aunt Alma? Sure I loved her ... but really? Really. I waited until it subsided and then went to find Vito who was happily snapping away. As we left I thought it was likely to be normal that I had cried. Vito asked if I was ok. I lied and said, "yes." But I don't do well lying ... especially to Vito, so I had to say, "Ok. No. Not really." And then I explained what had happened, waiting for him to either say nothing or give me the Michael Corleone look. I got neither. Instead he said, "You thought you were coming here to release New York. It sounds to me like New York just released you." Quite frankly, I was stunned. Not because maybe he was right (Vito is right 99.99% of the time.) But because maybe I was letting go.


Although I'm undecided about what to do with my shell when my spirit no longer fills my body, this is where my aunts and uncle hang out. Nice, huh? I could look at that for years.



The next day it was off to say the final goodbye to my birth mother ... it wasn't over yet.







Thursday, July 11, 2013

An Open Goodbye to My Birthmother: Barbara



Goodbye, Barbara -

Although I don't remember meeting you the first time I certainly do remember finding you 40 years later ... dead. Ultimately, I've come to recognize that this is a good thing as all a child's/adolescent's/young woman's/young mother's hopes and dreams of having a "real mother" certainly weren't going to come true in you.

Yes, it stung. Yes, I sobbed. Yes, I thought my life had ended. Yes, the first time I laid eyes on your grave in Sunbury, PA I thought I'd claw my way through the dirt to be next to you ... if only until I got hauled away. Somewhere there are a couple of photos of "us" taken in the rain by my now ex-husband. You, as I have come to know you through your gravestone, were elegant, formal, and have perfect punctuation. Me - wearing an amazingly tear stained poker face ... being photo bombed by two cranky little boys in a minivan already worn out from from a visit to their own grandparents, and a heavy dose of Gettysburg. Were it not for the tears, my face was as blank as that of one hailing a cab. The irony that a self proclaimed genealogist gave birth to a researcher is not lost on me. For as much as I curse the evil medical DNA you shared with us we also got major doses of "smart" along with some other fairly more than ok things. Oh. Yeah. I found my siblings ... and I thank you for that very detailed genealogist like obituary you wrote for yourself! Most helpful!

I had hoped to travel to NY to attend my own high school reunion this weekend, with maybe a visit to the "family plot" on the side. But Lyme, being the adversary that it is, may not make that possible. Given the opportunity I was going to stop by and tell you I won't be coming to see you anymore. I was even going to write you a letter, put it in a zippered plastic bag, and place it atop your grave with a stone (catch that spiritual significance?) But then I decided I'd worry about the potential of the letter getting lost in the rain, or the bag becoming unsealed and all my Lyme wobbly words being smeared (damn gel pens.) What if my computer crashed and I lost the Word doc ... etc., etc., etc.? Then there was the very real issue of the literal delivery. For as public as THIS is, there is also some sort of faceless anonymity behind it all. Mostly for me. Oh, it's "real," but it's not as "real" as my wanting to throw myself on the ground or worse ... sobbing stone faced in a car for 100 miles or so. Or both. I've done it before so clearly it's a possibility. What if, what if, what if. Too many shades of gray for this black and white woman!

I'd like to think that as a "mother" you thought about me on my birthday. G-d knows I sobbed my way through every one of mine thinking of you, and then sobbed my way through that song by that stupid mouse about being underneath the same moon. I saw you everywhere. Wondered if you walked the same beaches I did, read the same books, had any sort of style. I'm guessing "no,"no," and "hell yes."

So here it goes. In the mid-50's in NYC, Spence Chapin was THE place where all the "right" WASP college girls relinquished their children fathered by all the "right" WASP college boys so rich WASP NYers (Westchester Co, please) could adopt them.

ADOPTION WAS A LIE. Everything about it. Barbara, you signed no paperwork promising confidentiality. I was placed in foster care and adopted at age two. My non-identifying information told me things like you were small (true,) had blonde hair (lie,) blue eyes (lie,) and were majoring in elementary education in college. Lie. Lie. Oh. You were quite secretive about my birthfather (true) although he held a very prestigious position (big time true.) It was fortuitous that my dad kept ALL my adoption paperwork including the one where I became a ward of the State of NY. Me. Constance. ME. Two years later, by the stroke of pen and the Seal of the almighty State of New York, Constance vanished. Gone. Like into thin air. In her place, Ruth Ellen appeared. My dad told me there was a very loud verbal brawl between my foster mother, the social worker, and me (on one side of the wall) while my dad and adoptive mother were on the other. Given that all my clothing belonged to the State of New York they had to pin me down to get my clothes off and then I refused to let go of my foster mother. When I was delivered into my dad's arms I was one limp hot mess clutching a stuffed rabbit that the State, in its benevolence, had allowed my foster mother to give me. Apparently I had slept with it for the first two years of my life and she didn't want to me to be scared with nothing familiar around me. Now THERE'S a mom.

Babs, you've been the subject of much counseling over the years and most recently I rather defiantly said to my current counselor, "You know what? I didn't HAVE a mother. I had three chances and NO ONE wanted me. Not my birthmother, not my foster mother, and not my adoptive mother. I'm my OWN damned mother." (Oh, and thanks for that defiant spirit, btw, it's gotten me through a LOT.) I was rather proud of myself for that little nugget of realization only 56-58 years after the fact, and was kind of glazed over when he responded. I had to ask him to repeat himself and as I leaned forward he said again, "You're so much farther than that, Ruth. So much farther. You know what love is and isn't. You know what family is and isn't. You don't like it, but you know the truth. You're past accepting the unjust and have moved on to redefine yourself and those you let into your life through those lenses. If you make this trip, it will be a journey ... one you'll be glad to have made." I kind of shrugged it off as I was paying him until he said, "Don't forget to bring something home with you so you can remember where you've been and what you've accomplished. You do that." (He's right ... I do.)

So yeah. Next time I visit I won't be bringing you any flowers, or letters, or a stone for your grave. But I will be taking one home with me, because MY adoption is about ME. Not you, and not my adoptive mother. ME. Constance. Ruth. ME. You're in the mountains of PA ... I've got some slate from my dad's backyard in NY. I think some slate from PA might be in order. Even if all I do is walk all over it.

Goodbye, Barbara. I'm thankful I found you and am equally thankful I never met you. I don't think I'd like you at all.

Constance -

Oh. I just googled that stupid mouse song and here are the lyrics. I still can't bear to listen to it ... I guess my healing is not yet complete. But it will be ... believe me, it will be. Listening to it no longer makes me weep for you, Barbara. It makes me weep for me.

Somewhere out there beneath the pale moonlight
Someone's thinking of me and loving me tonight

Somewhere out there someone's saying a prayer
That we'll find one another in that big somewhere out there

And even though I know how very far apart we are
It helps to think we might be wishing on the same bright star

And when the night wind starts to sing a lonesome lullaby
It helps to think we're sleeping underneath the same big sky

Somewhere out there if love can see us through
Then we'll be together somewhere out there
Out where dreams come true

And even though I know how very far apart we are
It helps to think we might be wishing on the same bright star

And when the night wind starts to sing a lonesome lullaby
It helps to think we're sleeping underneath the same big sky

Somewhere out there if love can see us through
Then we'll be together somewhere out there
Out where dreams come true


Wednesday, July 3, 2013

Why Dressing My Truth Does Not Involve DYT Recommended T4 Colors: Quasi Redux



First of all, I can't even believe how many "hits" my DYT post got. I mean, really, I'm dying on the vine over here, people.

But as I've languished for the last few years and lost most of what was once mine, I've had lot a of opportunity to think through, and more fully process information I may have at one time espoused.

Here's the deal. I am very, very thankful for DYT and very, very thankful for learning that I am a T4. And whew ... am I EVER. That's called "Energy Profiling" and Carol Tuttle communicates that brilliantly. But where I "fell down" is believing that my best look involved the colors associated with it. What to do, what to do. First off, sell of all items I KNOW make me look like death warmed over (goodbye, ORANGE) and usher in the colors that work for me.

Just that easy, just that quick.

I think Energy Profiling is brilliant and every single human being should have this in their "tool box" of self awareness tools as well as communication. I raised three T4s and a T2. The Entrepreneur wasn't called "Mr. Sensitive" for nothing. His "just the facts, Jack" brothers were undeniable. All felt like strangers in a strange land. All are T4s. I wish every single teacher on the face of the EARTH had to read about varying personality types and associated learning styles. IF education is about the student (yes, I'm still that idealistic) then how much easier would it be to KNOW what techniques to try to best help a child achieve their potential?

But I wax philosophical ... which is one of the reasons I was drawn to DYT years ago. It's not about "being pretty." It's about knowing oneself and being one's best self. BUT. Correlation does not imply causation. YUP. This means don't pin me down and I am my own authority. I'll do my research, listen to those I respect, and take everything under advisement so I can PROCESS. VERY T4. Color does not fit into that equation anywhere. I LOVE Energy Profile and am so grateful to have that self awareness. But color? Color does not equate to an EP type, an MBTI type, or any other personality profile.

Yup. I dress my truth and live my truth ... which is much more important to me anyways.

Wednesday, June 19, 2013

My Personal Lyme Story: Part 2 - Treatment



Let it suffice to say that I started writing this in May. Maybe I don't really need to say much more regarding how treatment is going. It's hard, it's working, it's like taking baby steps across a bed of hot coals.

But back to the beginning ...

When I learned I had Lyme Disease I spent a lot of time online researching different treatment protocols. There are many options from which to choose, but I decided that as I'd had it for easily a decade, I needed aggressive treatment. Having seen "Under Our Skin," I decided to go with an LLMD who followed Dr. Burrascano's treatment protocol.

Not as easy as it sounds ... first of all many LLMDs SAY they will follow Dr. B's protocol yet have never read it (really.) OR, they'll work that into their own favorite protocol (a deal breaker.) I made an appointment with a doctor in Chicago who, although controversial, had some great recommendations. The weeks/days leading up the appointment were fraught with fears/tears/and much indecision.

We all know I "plug in" spiritually and so was in almost constant prayer about this and try as I did, I did NOT feel settled or at peace about any of it. Vito always loves a chance to go to Chicago and go grocery shopping; I also know he was very, very, VERY concerned and wanted me to see a doctor ASAP. Vito is Mr. Prepared. Really, the guy should have been a Boy Scout (actually, it's just fine with me that he never was) ... my point being, when I am with him I NEVER worry that we will get lost, run out of gas, or anything! He puts my ability to plan to shame ... almost obsessively so. Needless to say, when he called me the night before we were to leave to ask for the address, I was STUNNED (and a little perplexed.) I mean, addresses and directions are HIS thing, not mine. Now I have to be sick AND figure everything out? Not cool, Vito. Not cool.

A little huffy I opened up my computer and typed the doctor's name into Google's search engine. BOOM. The Chicago Tribune front page popped up outlining his grievous offenses (all of which were ABSOLUTE deal breakers for me.) I have never been so upset in my life. Vito probably offered to come over for moral support. Who needs help crying? I was doing a really good job all on my own. In truth (as I reread this) he DID come over as I was actually, and I'm not even close to kidding, hysterical. He hung in there with me while I sorted things out, fully agreeing that trust is an issue for me and if I can't trust my doctor I'll NEVER have a good relationship w/that physician. Point taken, V. The next morning I called the doctor's office and cancelled. I'm sure the receptionist knew why and I didn't even feel good enough to murmur words of encouragement.

I decided to see a widely known LLMD in New York and had to wait about nine more weeks of agony. Vito flew into NYC with me, we drove to see my mom upstate and visited an awesome doctor and human being (as well as a nature photographer ... a HUGE positive indicator for Vito.) After a review of my latest lab tests (which were way more negative than those in August) and a brief physical exam he declared that SOMETHING was wrong ... but that he couldn't label it Lyme Disease although he was convinced it was a bacterial infection. Yeah, ooook.

As I had seen Babesia squiggling across a Darkfield screen he treated me for Babesia for a month, and when it didn't make a difference he took me off the med and put me on a single antibiotic. This went on for almost a year until I asked him, "We all know Lyme is a clinical diagnosis, what's it going to take to get one out of you?" When he responded with, "A Bull's Eye rash" I knew we were done. Really. Even disabled I know the difference between objective data and a clinical diagnosis. A Bull's Eye rash is pretty objective.

Quite frankly, I was terrified all over again as I knew I was going to be starting at ground zero IF no damage had been done by my previous treatment. I fairly quickly zeroed in on a couple of east coast doctors and then was directed to another website. It was intriguing. This doctor absolutely followed Dr. B's protocol aggressively yet while treating the WHOLE patient (diet/lifestyle/supplements/meds.) Having worked in the field of "Chronic Fatigue Syndrome" and "Fibromyalgia Syndrome" for 11 years this doctor was well acquainted with the myth that there is no root cause of either "syndrome,"(see also: collection of symptoms.) When tested for Lyme Disease all this doctor's former ME/CFS and FMS patients were positive. I had found my doctor!!!

About six weeks and many vials of blood later, a good friend of mine drove me half way across the country to meet the stranger who would become my new BFF (doctor style.) I IMMEDIATELY felt comfortable with the doctor and staff. My test results are clearly positive and I'll never have to take another Lyme test again to "prove" myself to ANYONE. To recap, in the bacterial department I have: Lyme Disease, Bartonella, Babesia, and Erlichia/Anaplasma. No need to run down the four viral components as there is no specific treatment for them.

So. The nitty gritty.

Drug 1 - No problem. (Treats Bartonella and Anaplasma)
Drug 2 a week later - A slight headache and dizzy for a few days. No big deal. (Treats Babesia)
Drug 3 a week later - This one is THE mainstay of Babesia treatment and, whoa. I sweat so much I felt like a Slip and Slide.
Drug 4 at the end of Month One - NOW it's getting tough. (My first official Lyme med!)

I am not yet cyst busting and my symptoms for the past month have been nothing but frightening. I held my own for the first couple of weeks and then hit the wall. (This is a figure of speech as I don't have the strength to hit a wall ... although I do have the lack of coordination.) I was no longer just feeling like I had been curb stomped. My glands have swollen so much it has become hard for me to turn my head. I drool. I stagger like a drunk. Sometimes I can't hold my head up. I have some nifty psychological symptoms.

Last night my IC (interstital cystitis) kicked in to the point where I couldn't move. Couldn't drive myself to the ER. Couldn't dial a phone. I felt like I was being continually stabbed with a dull knife. (Note added in June ... Vicodin worked but I was a complete blithering idiot in an email to my LLMD.)

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And now it's almost mid-June.

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And now it's a few days later.

The good news: Based on the past 60 days of pure torture I'd say I'm winning. It's just not fun. But I've always chosen winning over "fun" every day of my life. If the cliche' "what doesn't kill you makes you stronger" holds any weight, then I Am Superwoman.

THAT is how my treatment is going.

Oh. Another Lyme patient recently asked me, "Is there any other way to go through this?" Um. No. No. No. No. No. This is moment by moment, breath by breath aggressive warfare. There are no Warriors who have not gone head first into battle. Personally, I'm blasting away with all I've got (unilaterally.)

YSMV (Your Symptoms May Vary.)