"Twist" Makes the News

From Overachiever to Overmethylizer

Had this been a normal cycle, I would have started antibiotics again on Monday for the next three week cycle. However, we have thrown in a side order of Thanksgiving, so I am taking an extra week, as the Week One Babesia protocol renders me useless.

I continue to be intrigued by the possibility, the actuality in fact, of overmethylation and how this is effecting my improvement. Methylation itself is a pretty complex process, as I have understood it. In my case, having tested negative for the genetic mutations MTHFR and COMT which can be associated with a disruption in methylation, there seems to be some issue, rather large and disruptive issue in in the process that is throwing a wrench into my body's ability to properly metabolize methyl groups. The language I am using may be totally off, but this is just how I have understood it all. I am doing a blood test on Tuesday morning with my LLND, Dr. Steve, to check to see where in the process my system breaks down, causing such havoc during my antibiotic holidays. 

It's been so bad, that I have had to stay on two antibiotics when I am supposed to be on none. While I am more comfortable this time around in terms of joint pain, my sleep architecture has, once again, been flipped on its head and I am getting up at 2 or 3 in the morning. I have had other disruptive issues, but I do believe that cutting the Deplin, B-12 shots (25,000mcg every other day), and a couple of other supplements, in addition to adding Niacin as per Dr. Jemsek's order and Quercitin and NAC as per my own orders has helped a great deal with the side-effects I experienced after the last protocol when I went down to DC. 

I always try to play my hand of cards as best I know how and I am certainly known for throwing every ounce of strength I have at healing - mentally, physically, spiritually, and emotionally, but this round has made me feel a bit weak. That said, I have forged ahead and made April vacation plans, knowing and creating the reality that I will be well then, ready to take off for seven nights in the sun, far away from here - literally and figuratively.  

I repeat my 3 week antibiotic protocol on Dec 2. At least this time we all go into it knowing what we will experience. This round more than any other, except when I was on the IV PowerLine, has required more outside help than ever. My parents and assistant have had to really step up and take over for a longer period of time than any of us every wanted or expected. But, we will get to the bottom of this and I continue to keep my eye on the long-term remission ball. In several months my life should be completely normal again, or so Dr. J says. In the meantime, I keep on going, am vigorously compliant with my treatment, and passionate about spreading Lyme awareness. 

Organically, my book has sold VERY well, so far. It will be exciting to see what happens when my big PR campaign begins in January. Once I get back from Punta Cana, it will be time to put that tan to some use on tour.

Be well.

Not Even a Chuckle

Yes, it's been an incredibly exciting time. My book finally came to fruition and is out there, emails are coming in from around the country from people I do and don't know, thanking me for putting words to how they feel but have been unable to express. Between the covers of Twist lie most of the energy I had in 2012 and the beginning of this year.

By now, you all realize that my story is not over just because it has a gorgeous shiny cover and a byline. In fact, my story is far from over. Sometimes I wonder if it ever will be. As you can probably tell from my recent posts and the tone of my writing today, I have been suffering greatly as of late. My pain level has reached a new height and I am now at the point where I cannot be in any position comfortably without the excruciating pain in my sacrum. Having had Lyme for 28 years now, I know what pain is, but this is a whole new level of pain, one which has now brought me to a whole new level of medication.

Having worked with a Lyme Literate Naturopath for many years, I realize that my care must be integrative and that I must take antibiotics. I went the Powerline to the chest route for the better part of 2012 and into 2013. I remain on high dose oral antibiotics. And I continue to have Herx reactions that throw me through the roof. But this new pain, this astonishingly deep pain has me writhing in misery and I have given in and tried a new drug of which I only have a few,  to break through the pain so that I can then get on a cycle of less scary drugs... like Vicodin. Yes, Vicodin has now become the new Aleve. You see, it's not my muscles that ache anymore, it's pain from inside bone and from my spinal fluid. And it scares me.

I don't like having these drugs around, so I don't keep many around. I only fill prescriptions as needed, not ahead of time. And today, well, it was as needed. I don't think I have ever felt so drugged, not even when I had my allergic reaction to Lyrica during that hell week last year when I was slumped over like a rag doll. I don't like feeling this way. I prefer to feel clear-minded, in control so that I can use my positive affirmations and brain power to muster some level of physical, emotional and mental strength. But it is what it is and thankfully, I had my assistant here when I took it because I found it to be unnerving. After a couple of hours of nodding in and out of, I guess, consciousness, I called her up to come and sit with me. She saw right away that I was in a different state than she had seen me in and we talked for a solid 30 minutes until I started to feel myself come out of it and be a little more functional.
While it did break through the pain as promised, I feel entirely shattered energetically, as I often do after a seizure. I am just SO EXHAUSTED now.

I wanted to write while still in this aftermath eight hours after having taken the pill. I wanted to write now because if and when I write about it in retrospect it will definitely be funny and witty and full of wise-cracks, but I want to acknowledge how serious this is and how real it is for me and for so many people out there. I have never experienced such pain for such a prolonged period of time in the same place and I know I am not alone. All of these hours later and I can barely keep my eyes open, I don't feel even the sense of a chuckle anywhere within me, and I don't know when it will stop. This, is the grim reality of where I stand right now in my treatment - on antibiotic holiday, yet still on two antibiotics because I cannot even imagine how I would be suffering if I were taking none at all.

And so while I apologize for the somber tone of this post, I think it is important to share because if anyone finds health in humor, it's me and yet, I cannot seem to find any sense of humor at all right now. And that must mean that I am suffering more than I even realize, because I have never NOT been able to write an entire post without SOMETHING funny to say. And I long for that. I could use a good laugh right now, but instead, I will turn on the alarm and call it a night, hoping the funnies will creep back up on me in my sleep.

Full Moon

Tonight is another full moon and I go into this one fully aware - armed and ready. People with Lyme are very often affected by the full moon, which sets off all kinds of havoc in a Lyme infected body. There is very little information available as to WHY this is such a phenomenon, but it is a reality for so many of us.

"So what do we humans know about this subject matter?  Well, we know that a full moon occurs every 29.53 days.  We also know that the reproductive cycle of Borrelia Burgdorferi is roughly every 28-30 days.  What has been observed, but not understood or proven why, is that these two events seem to coincide; they happen at the same time continuously.  Based on these facts, one may be inclined to reason that the uncanny and mysterious affect of a full moon acts as reminder or alarm clock, if you will, for borrelia burgdorferi to reproduce.  Possibly, but many people experience an increase in symptoms in not just a full moon, but a new moon as well.  Without definitive, certain or conclusive evidence, one can only assume there is a mysterious correlation between lunar activity as a whole and Lyme Disease. " -http://www.tiredoflyme.com/full-moons-and-lyme-disease.html#.UojdmWRgb64

We do know that a day or two before the full moon our symptoms begin to worsen and on the actual night of the full moon, we can count on complete insomnia, no matter how many sleep helpers we have - I have 7 powerful pills a night for sleep to change my "sleep architecture", as Dr, J calls it, in order to turn my clock back around so I sleep at night and not all day. But this is not the case during the full moon. 

I have been having complications with Lyme/Babesia acting up in my spinal fluid and it has gotten worse in the past couple of days. I have spent a lot of time under an electric blanket with a heating pad on high on my back. It's rough to say the least. 

So what are my worsened symptoms during the full moon? Swollen joints, increase in muscular-skeletal pain, confusion, exhaustion with inability to sleep, nausea, and etc.  Sound like fun? 

Yesterday Mom and I took Mini to see her first movie in a movie theater. It was great fun to watch her watch the movie. She was very excited and I am glad we did it. In order to get anywhere from our town, we have to drive 40 minutes. On the way home, I began to feel light-headed and very out of it, Yes, I overdid it. When we got home, I have no recollection of dropping my coat on the floor and getting right in my bed, falling asleep immediately. I woke up at 5:30 when Mini woke me to say she had eaten and my mom was going to leave. She played with her iPad while I slept on. 

Mini, having skipped her nap that day, asked if she could go to sleep at 6p.m. I helped her get into bed, put the dogs to bed and immediately fell asleep again. It is apparent to me that 4 hour excursions are not something I am ready for yet. If I can't pull it off on an antibiotic-free holiday, then I am just plain not ready. 

I don't let this get me down, because it is too easy to do that. A quote from the wonderful Kris Carr echoes in my head, "When we accept ourselves, our body opens up and can start healing."  

Books Are Out!

It's been a very exciting AND obviously exhausting week on the home front. My book is finally available on Amazon, B&N and will slowly find its way to bookstores near you. PLEASE! Consider requesting that your bookstore carry A Twist of Lyme: Living With a Disease That "Doesn't Exist". While of course you can order it online, imagine the power the book will have when people stumble across it at your local bookstores. My purpose has always been to raise awareness, so let's get that amazing book cover on shelves EVERYWHERE so LYME CANNOT BE HIDDEN ANY LONGER!

I have spent a good deal of time this week signing books in the morning to those who have ordered off the website. I am still waiting for the delivery of the hard cover books. I can only sign books when I have enough feeling in my right hand, my writing hand, so that can be somewhat limiting. I find myself wiped out after all of these signings and often slump down into a three hour nap afterward. It may not seem like a big deal to sign some books, but to sign them, then package them for shipment is pretty exhausting for a person with Lyme. I will have to pace myself, a hard task, since I find it very exciting.

It took a solid week for me to come off my antibiotics this time and while I am on an antibiotic holiday until December 1, I am actually taking two antibiotics to ease the suffering I tend to endure while on holiday. It's helped a big, but I still Herx and I am very tired.

I am now seeing a new acupuncturist who leaves the needles in your body, with small band aid-type adhesives to keep them in. It has helped tremendously with my spinal pain. I may very well have written about this already, I just don't remember, which is the norm over here.

This morning I decided to just get Christmas and birthday shopping done for my daughter so it's one less thing on my plate. I am thrilled with what I found and I know she will have a couple more things on her wish list for Santa, so I am sure he will pull through too. Nice to have the bulk of it done though.

I haven't written because I haven't much to say. I feel a little emptiness inside my brain, perhaps because with all that I have been working on it's been way beyond capacity for so long and now it's come to a halt. I have a bit of writer's block. I am hoping that will let up as time goes. For now, I live by the hour and so for now, this is all I have to say, but perhaps in an hour or a day or two, I will have something more profound for you to read about. I guess what I really logged on to say is that I am grateful for everyone's amazing support of the book. I can't wait to hear what you think of it.

Climbing Out of the Darkness

I feel like I have been the star of a show about vampires lately. I have literally spent the greater part of the last 3 weeks in the pitch black darkness. This round has been a rough one. The first week was the worst. I was completely not functional, taking Septra, Omnicef, Rifabutin, Artemisinin, Mepron, Diflucan, and Flagyl. This combo is a full-fledged war against Babesia and judging from how I felt and the nearly ten days I spent in complete darkness, my own energy and every ounce of my existence being a temporary casualty of war along with, hopefully, millions of spirochetes and their friends.

Week two was easier on my body - taking just Omnicef and Cipro, but I was still expelling the remnants of the week before, so I remained in a state of emergency, without power physically or electrically in my room for that week.  I do fine on Omnicef, but Cipro for me, like most is very upsetting to the stomach and so trips outside my bedroom remained mostly a direct route to the bathroom.

I just finished Week 3 of treatment, which was Coartem alone, of course with the usual 50 pills a day of neurotropics and natural supplements, and my body, once again took a beating.  I've required a lot of sleep and rest and with that, a lot of help. I am now on a three-week antibiotic holiday, so as not to start the wretched Week One of the same cycle over Thanksgiving.

Most of my readers know that I historically feel AWFUL on my antibiotic holidays, a time when one is supposed to feel better. I never do, although I can at least sit up and sometimes eat a little. I am considered "highly reactive" to everything and will remain on Rifabutin and Minocycline during my holiday, making it not exactly "antibiotic-free". I am, however, willing to do what needs to be done to be gentle on my body.

I had a scary episode five days ago, while lying on my bed. All of a sudden, out of nowhere, my body heated up, I started to itch everywhere and then I broke into full body hives, the worst being on my arms and my bright red face. My Benedryl had expired and I had just thrown it out. So I raced around, trying to find anything that would work. I found a bottle of Children's Benedryl and chugged half the bottle. That helped. In the meantime, I feared my breathing may be effected, so I called my parents and they came over in case there would be a hospital visit. As a Lyme patient, you want to avoid all ER visits unless completely necessary, because if you are to get injected with any kind of prednisone/steroid, it can completely disrupt treatment. Thankfully, by the time my parents arrived, the itching started to calm and Dad had brought real Benedryl, I promptly fell asleep and everything was fine.

I thought that was the end of that, but it happened again last night and I am not sure why. I have been told now to take Benedryl around the clock for 48 hours (and each time this happens) because something from the treatment is blowing up in my body causing me to react. Hives does not seem to be a positive step, but if I look at it as a rash of illness trying to expel itself from my body, I find myself quite content with the idea.

Yesterday I saw a new acupuncturist. She was very Lyme-knowledgeable and I was referred to her by my wonderful massage/physical therapist. After a lengthy intake, we started treatment. She used traditional needles in my ears and I certainly feel an electrical jolt in areas which do not surprise me - liver, spleen, and emotional areas all located on the ears. Then she did energy work to find where my body was calling for acupuncture. It was amazing because she would say "What do you think about right here?" and I would either say "Yes, I have pain there" the feel the pain of the needle followed by an eventual release, or I would say "Nah, I am fine there." "No, I'm not sure about that" and WHACK! YOWZER  You win!

The cool thing is that she uses these tiny needles that you keep in you. They have small caps on them and circular band aids and when they fall out after showering, you thrown them away until the next treatment when you get new ones.  The beauty of this? I have NO SPINAL PAIN whatsoever for the first time in years. I am so thrilled. What a gift.

As of today, I still needed a three-hour nap, but my mind feels lucid and I think I can finally take care of my daughter on my own tonight. That feels very rewarding. Since I tend to have terrible holidays, I expect it won't be this way every day, but I have learned to live for the moment and in this moment, unless I have a crash, I get to be Mommy again and climb out of the darkness.

The book is now available for purchase on the website using PayPal. Gift wrapping will also be an option for the holidays and will be added shortly. THANK YOU to those of you who have already bought your copy. Please consider those around you who may need a copy. If you have a book club, email me about how you can get your free copy. I am grateful for the support I have been shown so far and hope that the book will reciprocate that support through being relatable and common ground.

Halloween and BOOK'S AVAILABLE FOR PRE-ORDER!

Well, I made it through trick-or-treating with Mini, even if it was only 10-15 houses. For me it was quite an ordeal mentally and physically to make it happen, especially in the pouring cold rain, an obvious challenge since we know rain makes all of my swelling and pain worse. It was rough, but Snow White was thrilled with her loot and we got home in time for her to go to bed on time (school night) and me in a tub to thaw.

I still have no feeling in the right half of my right hand. It's been a month now. Clearly the reappearance of Babesia has brought some nerve issues along. It's frustrating because I really need to be able to write and at the moment, I can only type with a couple of fingers.

I had several days since the "CRASH" entry of poor leg strength, but it seems to be coming back a bit. Dr. J has written a script for a wheelchair, which I have avoided but feel more secure having in the car now just in case I want to... go somewhere. I need to go somewhere. Problem is, I spend all day in bed either in pain or completely exhausted. I have now cleared week 2, which was better than week 1 by miles, but still rough. This round has a week 3 involved, so we'll see how that goes. Then I will be on holiday through the end of the month. That said, I am so reactive on my "holidays" that I will still be taking two daily antibiotics throughout to ward away the pain and symptoms that tend to creep up.

I finally finished watching all seven seasons of The West Wing and THANK GOD Josh and Donna got together because I would seriously have gone postal had that not worked out. I am so glad I watched it over 3 weeks and not 7 years or I might have been picketing the producers' trailers...

It's a nice day out. It's very warm for November, in the 60s, and I wish I had the desire to go out. The truth is, I am pretty down these days, having been stuck in this bed and now not quite knowing what to do with myself. My fall in the shower has scared me into going somewhere even for a little while, though I need to force myself to do it.

The book has gone to print! While it won't be ready to ship for a few weeks, you can find it on Amazon now and add it to your cart to be shipped when it's been printed in the next couple of weeks. I am really excited about this and hope it will help so many out there. Please spread the word.