If this is your first time visiting, you may want to begin by reading "In a Nutshell", following up with "When I Really Realized That Something Wasn't Right", and finally "The Team Persy Manual".
One question: how many times have you left your home in the last 3 weeks? I think I've left mine 5 times. Always to return home, back to my bed.
Today was my monthly f/u (follow up) with my doctor. Given how hard I've crashed and how badly I'm reacting to pretty much everything in my environment, we're discontinuing all treatment for Lyme & Co and instead focusing on MCS (Multiple Chemical Sensitivities) and basic immune support. You may be wondering what exactly this means, and you can read about it here, but briefly:
"Multiple Chemical Sensitivity; in broad terms it means an unusually severe sensitivity or allergy-like reaction to many different kinds of pollutants including solvents, VOC's (Volatile Organic Compounds), perfumes, petrol, diesel, smoke, "chemicals" in general and often encompasses problems with regard to pollen, house dust mites, and pet fur & dander."
As I stated in an earlier post, I began crashing as soon as I landed 3 weeks ago. I have yet to really get my feet back under me. If you've ever had an asthma attack, or witnessed one for that matter, you can imagine the reactions I've had to simple things such as candles, perfumes, animals, soaps, cleaning products, bug sprays, etc. Some of those reactions are milder than others. Many of those reactions are newer in the sense that I didn't react to them prior to going to San Diego but I certainly do now.
It appears I may be regenerating from Lyme & Co (we've been wondering for the last few months) but it's too difficult to tell because I'm too toxic.
Here's the catch with detoxing - as long as I'm living in a toxic environment it's going to be a waste of time, energy and money to focus on hard-core detoxing.
Anyone in my life knows how sick I've been over the years. It's heartbreaking to know that there is someone who is far more ill than I. She's literally hanging on by the scratchmarks of her nails.
In efforts to help Elizabeth get life-saving treatment, I decided to share her story here, as taken from her bookpage here.
"Note to Reader Foreword (from Elizabeth's book)
Dear Reader,
I don’t know if there is really a way for anyone to understand the depths of pain and suffering from which this work of Elizabeth’s springs. As one who has witnessed this firsthand, being physically with her in the day-to-day more than anyone else, it’s still unfathomable to me what she goes through. The reality of her minute-to-minute existence is far too unbelievable to wrap the mind around. Most of the writing was done in a very dark, cold room in complete silence. Much was done with the computer on Elizabeth’s lap, with her typing with her eyes closed, as the light even from the computer screen was too much, too painful. All of it was done with a continual headache/migraine, as those only change in level of severity. She worked in small increments in between excruciating, unbearable physical pain and exhaustion, and moments of reprieve where the physical pain/symptoms and migraines were “bearable enough.”
Most of us will never know the loneliness that she experiences or the fear as she watches uncontrollable things happen to her body each day. Even though I am with her as often as possible, and she is never out of my thoughts or my heart, most of this she suffers completely alone, except for her constant companion and angel of God, Symon.
Yet in this existence, that is impossible to call a life, she has never wavered in her faith. She has sought, screamed, challenged, asked tough questions, and been candid in her queries, and also candid in all of what she experiences. However, she has never abandoned her faith. Additionally, she has always been there to support those she loves in spite of the constant abandonment, with words of faith, encouragement, love, and wisdom, always giving beyond her strength and capabilities and often paying a huge price of increased physical pain and other symptoms for days or weeks, as her own health deteriorates.
To me, she is the epitome of what God wants for all of us. To love where there is no evidence, give when there’s nothing left and believe where there is nothing left to hold onto except “the scratch marks our nails left behind.”
Elizabeth, you are and will always be a daughter, very dear friend, and mentor to me. I congratulate you on completing this amazing project, this work of raw faith. Your perseverance is astounding and awe- inspiring. To witness the tortures you live every second of every day, the loneliness, the travesty, and injustices, and then to see the incredible genuine love you are, is truly phenomenal. God shines through you so brilliantly, such is evident to all who know you and know of you—and is equally evident through the God-inspired writing you have completed and now share with the world. I love you forever.
Dr. Corey Cameron
__________________________________________________________________________
Sudden loss and great destruction shattered the everyday world of Elizabeth Chalker. Facing difficulties from the beginning of life, her spirit had persevered. But when a serious, long-term, physical illness that went unnamed for most of her life devastated her body, her hope for a future and her very life were threatened and continue to be even today.
In a short time, this beautiful, educated young woman—already established in her career in forensics and
neuropsychology and engaged to be married— experienced the unthinkable. Her engagement was abruptly broken, her career was lost, and most family and friends disappeared from her life. Nevertheless, as Elizabeth’s health has declined and she has endured other life calamities that sent her into intense suffering, remarkably her faith in God has matured and proven to be steadfast. At times she has had nothing left in her dark apartment but Symon, her loving dog, and the “Presence” of her heavenly Friend. He never left. Elizabeth might have argued that point for there were times when even He became silent. During those long periods she could have said with Job:
“Oh, that I knew where I might find God, That I might come to His seat! I would present my case before Him, and fill my mouth with arguments. . . . Would He con- tend with me in His great power? No! But He would take note of me. There the upright could reason with Him, and I would be delivered forever from my Judge. . . . But He knows the way that I take; When He has tested me, I shall come forth as gold” (taken from Job 23:3–10).
In the years I have known Elizabeth and witnessed the merciless testing of her faith, I have watched this spiritual realization rise to the surface. Like Job, she has been abandoned by the majority who were closest to her. However, like Job, she has come forth as gold. Elizabeth has not allowed her mind to stagnate. Instead, she began to write. The ripe fruit of that writing is in your hands.
This is no ordinary book about personal loss, crisis, physical illness, and shattered ambitions. The message here runs much deeper. What I discovered— being mirrored back to me—were my own responses to life’s disappointments. Somewhere, Elizabeth disappeared and I saw myself struggling with personal issues that needed fixing. Many were issues I did not know were there. At that point, I realized the book had a “surface” message and a deeper, heart message. As you read, allow the book to read you. Let Elizabeth’s cries of the heart and spirit uncover what is sequestered in your own heart. Let Elizabeth’s words lead you on a journey beyond her illness and life tragedies to its conclusion— where you will emerge challenged and even strangely comforted by your own life struggles, knowing that you too can have access to this pure faith, realize the bigger purpose for your life, and “come forth as gold!”
Pastor Charles Carrin Retired from serving an individual church; now pastoring pastors."
I've yet to read this book myself but have heard nothing but great things about it.
They have finally found a LLMD who is willing to see Elizabeth despite how sick she is. There's a fundraiser frantically taking place to help get Elizabeth from her home in Florida to the doctor in Maryland. Given the severity of her illness, she is unable to ride in a car/van/bus etc. on the road and is unable to fly commercially. Her only hope is a chartered flight. Donations of and assistance for such extreme measures have been exhausted hence the reason for the fundraiser. If you can contribute at all to the $23,000 needed, please do so using the contact information on her website. There are folks who've been donating as little as $5.
It appears my monthly updates are more like once every two months. I appreciate the 'check-ins' from those of you in the meantime. :)
To start, I still do not care for (in the words of my Gram who didn't allow us to use the term 'hate') the term 'better'. I know it's easy to ask if someone is feeling better or to tell them they look better or to even tell them you're glad they're feeling better. However, that's not a term to use with a Lyme patient. We fight so long for a diagnosis that we often end up so incredibly ill that we'll literally be fighting the rest of our lives.
In late-April I began a treatment targeting Bartonella. This is an herbal remedy that comes in a liquid form. I started with a single drop in about 1/2 ounce of water twice a day and slowly built up every 5 days. Once I reached 6 drops some pretty intense herxing started and my doctor had me drop back down to 4 drops. Through various fluctuations in drops vs herxes, I'm down to 3 drops for now. Amazing how just drops of a remedy can have that much effect, huh?!
At my monthly follow-up with my doctor in May she pointed out that by herxing it shows that a) I do have a Bartonella infection and b) we're on the right track for treating it. She was please to see how well I'd been doing and we were both anxious to see how I do when I returned home.
I've described what a herx is in previous posts but for those who are wondering what the experiences were like this time around it was a lot of neuro stuff. Lots of sporadic spinal and hip pain. Not necessarily sporadic in the frequency but the places. There are various spots along my spine where I get an acute stabbing pain. More seizure-like episodes and tremors, especially at night or after I've done anything that's stimulating during the day. Some disorientation. One evening as my friend & I were driving home we were coming upon the exit to my grandmother's house I nearly asked her if we could swing by but then I realized that it wouldn't exactly work since Gram's been gone since 2007.
I should probably clarify that nobody chooses to feel this way. I don't know of anyone who can have a seizure on demand. In the words of one neurologist I saw, "a seizure is nothing more than the central nervous system being overly-stimulated." For the first time in ages, I reached out to a friend, a non-Lyme friend who had seen Under Our Skin and who I felt was compassionate enough to understand. I shared with this friend that I was feeling more & more like Mandy and less & less like me. The response was shocking - "What can you do to change that?" And later "You're letting it win." I suppose this person was trying to be supportive but instead it was incredibly hurtful.
Despite the more severe herxes (I'd rarely herxed with treatment until then) I thrived while in San Diego. The warmer & drier climate made a HUGE impact on the way I felt. Pain was lower and other symptoms were milder. I still struggled but I wasn't 90% bed-bound like I am here in the PNW. My anxiety was even lower - allowing me to do things and go places that months or even years ago would send me into full-blown panic attacks. Which is quite odd when you think about where I was in relation to where I am - large city vs small town.
I was able to spend some precious time with family and friends and even made a few new friends. And yes, I was able to meet all three new babies and attend a soccer match. :)
As soon as I stepped off the plane my body began to crash. It has continued to crash to the point where I'm fearful of the long-term ramifications. I feel like I took several steps forward in my personal War on Lyme while there and have been pushed all the way back to where I was prior to starting treatment last September.
Given the difference, I've made the decision to move back to San Diego. Something I never thought I'd hear myself say, something many thought they'd never hear me say. I can't ignore the simple facts though. I'll load up as soon as God provides a way.
Lyme, Babesia and the rest have been laying pretty dormant the last couple of months so we haven't been treating for them but I think good ole Babs is sick of being ignored and is beginning to have little fits.
For those of you who wonder about Lyme and would like to know more, Under Our Skin is now streaming on Netflix. If you don't have an account there you can 'rent it' through YouTube, Amazon, iTunes and other on demand sites.
For those of you living with a chronic illness or wonder what it's like to live with a chronic illness, pick up Laurie Edwards's book Life Disrupted from either your library or favorite book seller. She's written in mostly-easy-to-understand language and in fairly brief chapters, both of which make this an easy read. I'm about half-way through it.
That's about all for the updates. Not a whole lot of excitement. I hope to get to the point where I can educate small groups about Lyme and its associated diseases. Those of you on my facebook know I post quite a bit there in hopes of educating. I apologize for the rather negative update - it's just where I'm at right now.
Time isn't the only thing that changed this month. My protocol began to change as well. (Do you like how I just dive right in here?)
After 7 months of antibiotic injections, 6 months of oral antibiotics and 2 months of antimalarials (it's almost a 12 months of Lyme song) we decided to discontinue all of those. I'd been on them long enough for them to become ineffective and possibly begin building a resistance - which we don't want to happen.
For the remainder of March and up until my next check up I was/am antibiotic free. We did do a 3-day blast of a hardcore antimalarial which reduced the Babesia symptoms but didn't totally kick its butt. I experienced some crazy herxing but continued with it because the herx was only supposed to last for the 3 days that I'd be on the medication. And even being only 50% effective the herx was worth it.
I also took a one week break from the homeopathics that I've been on since October or November. I won't share with you why but the one-week break was good.
Since I've been off the antibiotics I definitely see a difference. My stomach is back to be as sensitive as it was before I started treatment. My pain levels have increased exponentially - which is almost fascinating when you consider that they were already at a near-constant 7-8 on the good ole 1-10 scale. How much pain can a Lymie take? A LOT! My comprehension has dropped a bit. I have basically been experiencing some "sundowner syndrome" type symptoms. Oftentimes once 3:00 PM comes around I start forgetting things and am even less able to comprehend the world around me. I've had entire conversations with people in the evenings and not remembered having them. It's both humorous and frightening all at the same time.
Are you still reading this? Would you like to hear some positive news? Not one but TWO of my favorite authors had new releases this month. You might be wondering why that's positive or why this would be significant enough for me to blog about. Each book is part of a series. A series where the characters, settings, writing-styles, etc. are all familiar to me.
Karen Kingsbury is a Christian fiction writer and released the first book in her Bailey Flanigan series Leaving. What I love about Karen's books is that she writes about real life. There is happiness & sadness, love & heartache, birth & death, health & wellness. And it all is done with Jesus. I laugh and cry as I read all of her books. Her happy endings aren't always the endings that most authors would write. But they're happy nonetheless. If you have faith. Leaving has left me on the edge of my seat waiting for Learning which doesn't release until June. Because the characters were familiar I was able to really dive into this story (as much as my eyes would allow) and escape the life of Lyme for about 12 hours. I struggled with one character whose name I didn't recognize but felt that I should. After asking a couple of fellow fans it looks like the character is new so I'm all good. This is one of those books that you could probably pick up and read without having read the rest of her Baxter/Flanigan books but being the neurotic OCD individual that I am, I had to read them in sequential order. You definitely won't be disappointed if you choose to do the same.
Suzanne Brockmann is probably classified as a romance writer but she's not what I think is your typical romance author. Her books - especially her Troubleshooters series - offer a lot of adventure, suspense and humor. Breaking the Rules was no different. This is Izzy Zanella's long-awaited story. And I L-O-V-E-D it - for all 16 hours or so that it took me to read it! This was by far her best writing yet. The chemistry is like none other. Again, you could probably pick it up and read it without having read the previous books in the TS series but you probably won't experience the vibrancy of it. Sadly this is her last book in the series for the time being but I'm anxious to see what she's currently working on.
Yes, I just shamelessly reviewed/plugged two authors. Neither have anything to do with Lyme other than the fact that both gave me a much-needed break from my reality.
My next check up is in 2 weeks. I know we'll be adding something to continue the Babesia treatment. I'm not sure if we'll go herbals or antibiotics or both for the Lyme, Bartonella and other co-infections. Looking forward to whatever is in store.
Then I head to San Diego for about a month to visit with friends, friends who may as well be family, and family. I will finally be able to attend my god-niece's soccer game (she's only been playing for 8 or 9 years I think). After a little over a year I'll finally chow down on rolled tacos from my favorite taco shop (nope, these aren't part of the Lyme diet). I'll be seeing friends whom I haven't seen in nearly 20 years! Visiting parts of the county that I've never been. Hopefully meeting all 3 new babies that arrived in late 2010. Should be a good time! If you're one of my SoCal peeps and you'd like to get together please give me a call or send me a message!
There are 3 non-Lyme events happening in San Diego while I'll be there. Please consider participating in one or more!
The Relay for Life in Ramona. My friend Sean is a Team Leader and is recruiting more team members and collecting donations. Please visit Walking for a Cure's page to make a donation and/or join the team.
You're now caught up from January through March. Talk about a fast-forward through life!
May is just around the corner. May is Lyme Disease Awareness Month. Please, please, please help spread the word about this disease. See the film. Help others see the film. Paint May Lyme Green. Saturate May!
Prayer is a powerful thing. I know - I'm experiencing it!
"Each day we make it through makes us survivors. Having the fight to do it day after day makes us Badasses." - Eric Dominic Rutulante
The most newsworthy event of February was the Under Our Skin screening. If you have yet to see this film please check the website for a screening near you - if it isn't playing near you consider hosting one! PBS is also airing it throughout the month of May (Lyme Disease Awareness Month). If your local PBS station isn't airing it and being around people isn't your thing visit the website above and purchase it.
It wasn't quite the turnout that I'd hoped for with about 60-70 folks attending - some who drove as much as 5+ hours to attend. Out of those 60-70 about 10 did not have Lyme disease. I had hoped to educate many more but as those Lyme patients looked around the room and saw all the hands raised signifying that they too are fighting this disease and its co-infections I realized that this event wasn't just an awareness for those who don't know about Lyme disease. It was also an event for people to realize that they're not alone.
We had four LLNDs who attended the follow-up discussion/Q&A by fielding questions and offering basic suggestions. Of those who viewed the film about 50-60 attended the discussion piece. Many great questions were asked which allowed us to educate ourselves even more. Some of the questions even prompted new thoughts and theories on the parts of the doctors!
If you're ever in need of one-of-a-kind gifts please check out the following craftivists: Victorious VixenUpcycled by Ash, Lymenaide, and Affairs of Living. Each of these ladies/organizations donated an item to the screening to be used as a door prize. Each of these ladies either have Lyme & Co or have family members who have Lyme disease. They use all proceeds to support themselves as well as their causes. I also had friends who donated a hand-made beaded watch and those nifty cozy packs that you can either microwave for a heating pad or freeze for an ice pack. They don't have websites but if you're looking for items such as these let me know and I'll send you their contact info! If you're in need of a photographer or poster-quality images I highly recommend Studio A Photography. I had mentioned to family & friends that I was looking for someone to do snapshots throughout the screening. Studio A donated their time to do this. It is truly heartwarming to see the generosity of these friends!
Just a couple of days after the screening I hit rock bottom. I'm thankful I had the strength and stamina to make it through the event. The fact that I fell so ill afterward is a clear indication that my body still cannot handle working.
A few weeks after the screening I had my monthly check-up. At this point I was at a plateau of sorts. And a low one at that. We weren't sure if the treatment was becoming ineffective, if it was because I was still recovering from the bug that hit me after the screening, if I simply overdid it by coordinating the screening or a combination of all three. My doctor and I discussed all of these as well as the variety of options. Together we decided to continue the protocol, adding this and tweaking that.
She strongly advised I go on an anti-inflammatory diet. The term 'diet' has such negative connotations in American society today so I instead call it 'nutritional therapy'. Basically I was to avoid all pork, luncheon meats, hot dogs, farm-raised fish, orange roughy fish, cow dairy, potatoes, breads, rice, corn, pastas, other grains, frozen or canned vegetables, starchy vegetables, frozen/canned/dried/packaged/processed fruits, mayo, salad dressings, canola, soy, safflower, cottonseed, whit sugar, brown sugar, honey, molasses, brown rice syrup, corn syrup, fruit sweeteners, maple syrup, agave, artificial sweeteners, roasted/salted/honey nuts, caffeine, alcohol and spice combinations.
I avoid much of that already - especially the processed foods. But my basic meals involve eggs, bread, sweet potatoes/yams, teas (usually unsweetened decaf), corn tortillas, cheese, beans, and some fresh fruit. I don't have the energy to prepare MEALS. I attempted this nutritional therapy but after three or four days of not eating much of anything it was eat what I know I can prepare and eat or end up worse. I do plan on trying this again but I don't feel that now is the right time. And in all fairness, I was only to do this anti-inflammatory diet for one month and then slowly add back in some of the more nutrient rich foods and see how I react to them.
An ideal Lyme diet avoids all sugars (Stevia is okay but I react to it), gluten, cow dairy, preservatives, chemicals (non-organic foods), soy, caffeine and alcohol. This leaves organic meats, vegetables, fruits, gluten-free grains, water, real juice, decaf teas, coconut/rice/almond/goat products (cheeses, milks, oils, etc.)
She also wanted me to try doing a green smoothie. In theory it's packed full of nutrients and is quick & easy to prepare and drink. I probably sound like a whiny-butt when I say that my reality is much different. For the most part, I like the suggested ingredients. It takes a whole lot out of me to gather, prep, blend, drink, and clean-up though. Not to mention how painfully loud my blender is! I feel like I'm in a catch-22, really. I know this would be good for me and would go a long way to ensuring I'm nourished.
There are some who have commented on my weight. Which is still a touchy and off-limits subject. My weight does not define me. As ill as I am I'm actually right where I should be according to the BMI. To be totally honest, I don't care about that. My focus is on getting well not on attaining a certain size.
February was the second month of the antimalarial medication. I still wasn't seeing that much of a difference but I continued with it because I suspect Babesia has been proliferating in my body since I was about 7 years old - if not younger. A month and a half of treatment likely isn't going to kill off such a profound infection that quickly.
I continued working with OLDN albeit not as much as I had hoped. My energy levels had decreased, my comprehension decreased, my language processing decreased. I was (am) a ditzy blonde!
Towards the end of February a friend of mine found a fantastic app called iLog Lyme which enables us to enter our most common symptoms then record them on a daily basis. From there we can email either weekly or monthly reports to ourselves, caregivers or our medical teams. It's quite the fantastic tool for monitoring our symptoms and tracking herxes & flares!
When I shared this with another friend who has Lyme he in turn shared Dosecast which is an app that not only lists the various meds & supplements we take but also has alarms for each, records when doses are taken/skipped/postponed, alerts users when a supply is running low and also email reportability.
Neither of these may sound exciting or even logical but when you struggle to remember when/if you took a medication, when you struggle to remember when you felt this or that symptom, when you struggle to remember the whole ball of wax when seeing a doctor - it's a lifesaver! While the iLog Lyme is specific for Lyme patients, Dosecast can be used for anyone. Both are quite reasonably priced as well. Since using both I've felt much more 'in the loop' with my body and my treatment than I have since all of this began. And even better, I haven't missed any doses which means I'm that much closer to beating this! Or at least beating it into remission.
Have you ever considered what your life would be like if you suddenly fell extremely ill? If you were suddenly unable to walk, carry on basic conversations, live pain-free, work, run, read, drive, etc.? I don't bring this up to be a downer but to instead encourage you to take care of yourself and those around you. None of us know what tomorrow will bring. We just know that God will be there. Thank you for all your prayers and support!
Do not be afraid of tomorrow; for God is already there. ~ Author Unknown
I bet all 7 of my followers have been anxiously awaiting my next update! I apologize for slacking off - I was waiting for something update-worthy.
January flew by with the coordination of a public screening of the Lyme disease film Under Our Skin here in town.
My treatment protocol stayed about the same in January with the exception of adding a antimalarial that targeted Babesia. For those of you who are unfamiliar with Babesia the symptoms include: significant fatigue, coughing, dizziness, trouble thinking, fevers, chills, air hunger, headache, and sweats.
We ended up cutting the dosage in half because my body didn't tolerate it as well as we had hoped.
I stayed pretty quiet the rest of the month. Not a whole lot of excitement, let me tell ya! Hence the lack of updates.
As always, your prayers are most welcome. I'm not doing as well as I was a few months ago but I'm still better than many of my Lyme friends. There are some who wonder how I can maintain the faith that I have throughout all of this. It's easy when you feel Him with you.
"Visualize the most amazing life imaginable to you. Close your eyes and see it clearly, then hold the vision for as long as you can. Now place the vision in God's hands...and consider it done." ~ Marianne Williamson
The healing power of prayer is a priceless but most precious gift one can give to a person battling illness. I had an extreme realization of this for about a week in December. I was feeling like a new woman!
One Thursday evening I joined my mom and the two ladies from our local food bank where Mom used to work and the rest of us have volunteered for the last 18+ years or so on a shopping "spree" for the remaining gifts from the Sharing Tree. I enjoyed shopping for one particular family who happened to be essentially homeless this year. All I had to go on were the children's first names their ages (14-, 12-, and 2.5- year-olds, all girls) and the gift suggestions the mother provided. The distribution of these gifts was set to take place the following day. Knowing how busy this time of year is for the food bank and celebrating the fact that I was feeling so well I volunteered to come in the following day and sort all of the gifts. With the ever-present disclaimer of "as long as I'm feeling up to it", of course.
Friday morning rolled around quite early - 0200. Not surprising at all since I often wake up at "Lyme time" but I was certain I'd end up being completely useless before my tasks were done. While sorting the gifts I received greetings, hugs and prayers from folks I hadn't seen in a couple of years. Who needs energy drinks when one receives those throughout the day? I had nearly completed the family packages I learned the last name of the homeless family I had so enjoyed shopping for the night before. As it turns out the 2.5-year old is one of my former students and isn't 2.5 at all. She's 14 (how's that for making one feel old?)! So while I was sad that the youngster I spent so much time picking items out for wasn't even part of the household, I was ecstatic the the items I chose for the 14-year-old were perfect! Paying attention to how much energy I was using throughout the day but cautiously blazing forward I ended up staying for the distribution. The entire day was exhilarating. Especially after having such a bad flare up a month before.
After pushing myself the way I did, I made myself lay low for the next few days. The memory of the previous month's flare up was still quite vivid in my mind and I don't care to EVER repeat that again.
The following Tuesday I drove myself to my LLND appointment. Everyone there was surprised and excited at such an accomplishment. It's always a good sign when a Lymie can drive themselves that distance. The appointment itself was a positive one. Since I had been doing so well she removed 3 items from my protocol - 2 of which I was to just simply finish out the current supply, the other were the Vitamin injections (I was heartbroken about not having to do that quite painful activity anymore) and added only 1 different item. We also decided to continue with the abx injections because I was still responding to them.
I also found a fantastic bead store just down the street from my doctor's office! Thankfully it's a good 1.5 - 2 hours away so I won't be going there very often.
Soon after that I started to slide downhill again. I expected it, given how much I had done but was more than a little disappointed. For a couple of days there I thought I would soon be able to return to work.
One of my closest friends came into town for Christmas and we were able to spend a couple of hours together the day after Christmas. If it had been anyone else in town, I probably wouldn't have kept the date. She's one of those friends who knows all there is to know about me and still loves me. Who gets me in ways that nobody else does. Who allows me to be me. Add to that the fact that we only see each other about twice a year, well NOT meeting her wasn't an option.
I stayed incredibly mellow throughout Christmas and New Year's. The holidays themselves stress me out, which exacerbates the symptoms. Factor in a rather large and loud family in a small space and it just isn't a good idea for me. Luckily I enjoy being on my own and am able to find peace & joy in the little things.
My friend (& fellow Lymie) and I continue to work on our screening of Open Eye Picture's Under Our Skin. We've made great progress securing the location for both the screening and the follow-up discussion afterward (special thanks to both the development group and the property manager for their incredibly generous donations), the screening kit has arrived, flyers have been designed and are ready to be printed and an invitation to our previous doctors has been drafted. We're both excited to see this come to full fruition.
I was also able to finally begin applying for disability. It's quite silly that one must be unable to work for more than a year before being able to apply. It's usually always denied the first time around, and for Lyme patients sometimes more. We're praying that everything goes smoothly.
If you're looking for a way to help promote Lyme and associated diseases awareness, please visit the January Letters for Lyme site and participate by sending letters to your local lawmakers, the IDSA and anyone else who needs to know about this. Please continue to educate yourselves. Visit the Under Our Skin website for screenings in your area. Request the video from Netflix (it isn't available there yet but maybe they'll move forward with the purchase of it if enough people request it), Blockbuster or your independent video rental store. It's also available for purchase on the UOS website. Pay attention to your body and all that doesn't seem quite right. The sooner you realize you (or a loved one) may have an infection the better your prognosis.
Physical strength is measured by what we can carry; spiritual by what we can bear.~ Author Unknown.
I've had some friends ask about the treatment I'm currently using for Lyme. Many Lymies are on 40+ pills a day - all staggered strategically to both maximize effectiveness and minimize cross-reactions.
As of today, my meds depend on the day. On Day A I take one type of probiotic. On Day B I take another.
As soon as I wake up - take the thyroid medication. I have to wait an hour after taking this before I can eat.
One hour later - take a multi-vitamin, something to help break down the biofilm, the chill pill, an immune booster/adrenal support and probiotic A (10 capsules in all) plus 5 drops of Vitamin D. I also mix 3 homeopathic remedies into a tea and drink that. They're supposed to help with pain/inflammation, adrenal support, and nervous system. If it's Day B then I take probiotic B, wait an hour and then take the rest of these items. I usually eat about this time, too.
If it's injection day I pull the solutions from the fridge.
40 minutes later I heat up the hot pack and sit on it.
20 minutes later Mom & I do the injections. She does the antibiotic and I do the vitamin. This is usually pretty close to two hours after taking the probiotic.
At least two hours later I eat again then take the oral antibiotic. Because I don't have a whole lot of energy throughout the day and I'm not able to eat much this second eating is usually dinner time. The oral antibiotic must be taken about 2 hours outside of a multi-vitamin or the probiotic.
Two hours after that I take more multi-vitamin, the sleep aid, (4 capsules) and the homeopathic tea.
I'm supposed to also be doing a smoothie on a daily basis that helps balance the GI (stomach). I slacked off on it a couple of months back because it ended up being 32 ounces and the only thing I would eat throughout the day (that's a lot for me). Plus the blender is WAY too loud. The doctor's given me some ideas for alternatives which would still allow me to have the benefits of the smoothie without having to use the blender. I need to get a few of the foods to go into it though.
This is just the non-refrigerated stuff. One of the prescription bottles is an antihistamine to take as needed and the long box is albuterol solution in case I have problems with my asthma and my inhaler is ineffective. The rest is taken daily - some twice a day.
Never apologize for showing feeling. When you do so, you apologize for the truth. ~ Benjamin Disraeli
Yikes! I didn't realize it had been so long since I last updated folks.
We had a pretty good visit with my LLND at the end of October. By then the antibiotic injections weren't as uncomfortable and I discovered that if we do them in the morning and I go run a couple of errands it helps to loosen up the muscle and work the bug killers throughout my body - alleviating the discomfort I was feeling for days after the injections.
We had the results from the co-infections tests. None of which were really surprising, given my symptoms. Much of Lyme & co-infection diagnostics are done clinically (based on symptom patterns) rather than labratory (based on blood work, etc.).
She added Vitamin B12 and B3 (niacin) injections to my protocol, as well as a combination therapy (amino acids, herbs, vitamins, minerals, etc.) to help me sleep, an immune support, and an oral antibiotic to treat Bartonella. The vitamins are injected twice a week, on the same day we do the antibiotics. I had some friends ask about them so I decided to take a picture of the two injections and share it. The top is the B-vitamins. It stings horribly going in but I've found that if I slowly exhale while pushing, it isn't quite so bad. The bottom is the antibiotic. Yes, that's a big needle. The paperclip is there for reference of size.
Up until this past Friday (more on that later) I had been feeling some improvement. Still tire very easily but the pain seemed to have decreased and the rest of my symptoms were still in existence but had mellowed. I was well enough to have lunch or coffee with some old friends from high school - some of whom I hadn't seen in 16 years! If I could bottle up the healing powers of friendship and sell it as part of the treatment protocols for various illnesses, I'd be a wealthy woman. I also met with a couple of fellow Lymies. Time with those who have been there and done that - or in our case are here and doing it - is also very beneficial. I was also able to read more, too. Was almost feeling like my old self!
But then I had a flare up. I don't know if I did too much - was out for several hours 3 days in a row with various friends, if it was the full moon (many of us have noticed a pattern of our symptoms exacerbating during the full moon), if it was because I ran out of (and thereby was off) the aminos that help calm my nervous system (I didn't think they were that effective but apparently they are!), if I was in a herx or if it was because I ate french fries twice in 3 days. Over the last few months I noticed that potatoes (yes, one of those few foods I could eat last winter) ramped up my pain levels. I could eat sweet potatoes and yams without a problem but Idaho potatoes were a no-go. I removed those from my diet and didn't think too much of it. Oh boy do I now.
Whatever it was started with a horrendous headache Friday morning and just progressed into pain levels in the 9 - 10 range . Saturday was the absolute worst day since I began treatment. The crackles of the fire place, the door to the microwave closing, the sound of someone walking too heavily, and other seemingly benign sounds darn near pushed me over the edge. It isn't just that the sounds hurt my ears. It's waves of pain that go through my ears, into my head and travel all down the body. When I was trying to think of how to describe it the only thing I could come up with is standing beside a piccolo pete as it goes off while someone drags their nails down a chalkboard and hits you with a baseball. Not a pleasant image, I know.
Here it is, the Tuesday after the flare up. Dad & I chained up and made it down to my regularly scheduled LLND appointment yesterday. We had 4 inches of snow here. She's not really sure what caused the flare-up either but it could very well be a combination of the above mentioned triggers. We refilled my chill pills (nerve calming aminos) and believe you me, I cracked that bottle open and swallowed two of those puppies as soon as she gave it to me. I'm still sensitive, still in quite a bit of pain but I'm no longer feeling like I may need to be completely sedated until this latest flare-up passes; which I was seriously considering on Saturday. Yes, I was tempted to break my 'no hospital' rule. The one thing that prevented me from doing so is the belief that the docs there would more than likely discontinue my Lyme treatment and I'd just fall further behind and end up worse.
We decided to continue my current antibiotic regime for another month (December 2nd was supposed to be my last day of this round of the injections). Which I'm fine with given the alternatives - more orals or dealing with a PICC line or port.
Many people have a hard time understanding the lives those of us with a chronic illness are living. Christine Miserandino wrote a piece that explains it quite well. Please read her Spoon Theory. It's only a couple of pages and is an easy read. It takes less than a spoon to read ;).
There still isn't anything that most folks can do for me. Prayer is always helpful. Another helpful thing is educating yourself on prevention, treatment guidelines, and what living life in the Lyme-light is like. Check Under Our Skin's screenings page for a screening near you. If there isn't a screening listed, you can host one! If you live in my area, hang tight because we're actually planning one for mid-January/early February! Edit: You can also view the film on Amazon.com
Until the next update: Please be safe while celebrating this holiday season. If you drink, don't drive. If you drive, don't drink. Remember (and use) safe food-handling practices. Wash your hands and gargle often to prevent the flu bugs. Make sure your smoke detectors have live batteries. Embrace the therapeutic aspects of cooking from scratch - it'll give your kidneys and liver a break from processing the junk that's in the packaged foods!
I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've brought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me! ~ Dr. Seuss
This last month has been less than troublesome. At least a whole lot less than I expected. I began my first round of treatment with the first of 24 antibiotic injections on September 14th. I was told to expect the experience to be painful - the thick suspension is injected into the upper-outer hip using a 21 gauge needle. The needle itself is enough to give some a complex - even me if I think about it too hard. It takes about 6 minutes to inject with little pain. The faster it's done, the more it stings. I typically sit on a heating pad for about 20 minutes prior to the injection, which also seems to help a bit. As does sitting on it afterward. The discomfort after each injection is much like what I remember my last tetanus shot to be. We typically do injections on Mondays and Thursdays, alternating hips each time. The right hip will ache until Wednesday, just in time to shoot the left hip on Thursday which will ache until Sunday.
Aside from one injection, the discomfort hasn't been bad enough that I feel the need to discontinue this form of treatment and seek out another. I've lived in chronic pain for so long that it doesn't really bother me too much anymore. And with each injection, I pray that I'm that much closer to regaining my 'old' life.
Many have asked if I'm feeling a difference. In some ways I am but in other ways I'm not and I'm not able to really identify it yet. All of my symptoms are still there but they may just be less severe at times. Hard to say.
I haven't experienced any herxheimer reactions to speak of. Herxing is basically when the treatment kills off the bacteria creating a toxin that exacerbates all the symptoms. In general terms - getting a whole lot worse before getting any better. It's unusual to not experience herxing. Unfortunately, I don't know if I'm just lucky or if I'm on the wrong treatment because my doctor hasn't had time to answer my questions.
We've had two follow-up appointments. The first was supposed to be an hour and may have only been 15 minutes. Just long enough to educate Mom & me on how to do the injections at home. The second was supposed to be a half-hour and we saw the doctor for less than a minute. Her answer to my questions was that we could discuss it at my next follow-up appointment in 3-4 weeks. I'll be 2/3 of the way through treatment by then. We'll see how that appointment goes but I'm seeking out another provider in the meantime. I know there are very few LL providers compared to the number of lyme patients. I can appreciate that I'm not nearly as bad off as most patients. But I still need to know if I'm doing all that I am supposed to be doing or if I need to change things up a bit.
We've been very blessed with a mild autumn, which allows me to still get out to a few of the kids' games or just meet with friends at the park. Both activities allow me to get out for a few hours, get fresh air and sun, as well as spend time with those who are able to accept my limits and celebrate the fact that (for the moment) I'm not bed-ridden.
I've also been blessed with support from childhood and high school friends (some of whom I haven't seen in 15+ years). Thank God for Facebook! Most of them had never heard of Lyme, or didn't know much about it, until I was diagnosed. But they still celebrate and provide encouragement throughout this journey I'm on.
A year ago my vestibular system was so imbalanced I had to brace myself on the wall as I walked from my bedroom to another part of the house. I still have moments now but they're fairly brief. We'll see how the next few months progress and compare them to the twelve months prior. I still have limited energy - only about 2-3 hours a day for activity. I started some amino acids last month in hopes of calming the nervous system but I'm still quite sensitive to stimuli - I can watch my shows on my laptop but struggle with the television; I occasionally have to wear earplugs at the kids' games to provide a buffer from the cheering & whistles and the other morning the carbonation fizzles in a can of ginger ale sitting beside my bed woke me up; lights tend to bother me but not as badly; I seem to be running warmer this year than last; I'm still sensitive to touch - featherlight is as painful as being hit but deliberate, whole-hand pressure has been okay. I went about a month or so of not being able to read any books. My comprehension was that low. I've since been able to get back into books - provided they're part of a series in which I'm already familiar with the story line or there aren't a whole lot of characters/detail to process. I sometimes come across simple terms that I have to look up because I don't recall the meaning of them. If it were humanly possible to examine my innards and compare them to that of a healthy person and I would jump on the chance!
I came across an article featuring Pamela Weintraub's speech at the Institute of Medicine's Lyme workshop recently. I struggled with some of the terms she used but feel that over-all, it's a very well-written example of what Lyme patients have to deal with. Please educate yourself as well as those around you and please do not be afraid to advocate for yourself and those around you. You can find the article here.
I don't know exactly what lies ahead but I do know what lies behind. I'm thankful for the blessings of family & friends, thankful for the acupuncturist who finally identified the reason behind my life-long illness, thankful for the prayers that have been and continue to be prayed, and thankful for the strength and the will that I never knew I had until I needed it to fight. Who says stubbornness is a bad thing?!
Dad & I made the trek to see my Lyme-Literate Naturopathic Doctor (LLND) on Tuesday. We both liked the fact that she explained things clearly, didn't beat around the bush, and didn't sugar-coat anything but wasn't really grim either.
When diagnosing Lyme she looks at a variety of factors:
~ history of exposure - between our dogs having had ticks while I was growing up, a variety of bites from mosquitoes and unknown insects throughout my years, and spending the last nearly 18 years living in the sticks the risk of exposure is pretty high.
~ antibodies - this is where the blood work comes into play. According to the blood work done in July, I've been exposed to Lyme at some point in my life.
~ symptoms - I have MANY and all indications show that it has crossed the blood-brain barrier and is now in my nervous system. Which isn't news to me.
She reviewed the vitamins, herbs, supplements, etc. that I've been taking and made recommendations on what I should continue taking and what I should add. There were a couple of them that she said I didn't really need to continue taking.
She also provided me with a G.I. Smoothie recipe which I'm to drink 1-2 times a day. The goal is to calm my gut issues so that a) I'm better able to absorb nutrients and b) treatment won't be as rough on the stomach. When I tried it yesterday it was horrible. I changed a couple of things today and it's now tolerable. I can't say that I really look forward to it yet, but we'll see. It seems to be bringing back my appetite except that there still isn't anything that sounds really tasty. Except ribs. But ribs always sound good to me.
She offered a couple of initial treatment options. One option is antibiotics in the herbal form. I use the term antibiotics fairly loosely because I've heard anti-, micro-, and macro- throughout this entire learning process and I honestly don't remember which terms she specifically used during the appointment. The other option is an antibiotic injection that is done twice a week. This particular drug is in the family of one I'm allergic to but because the reaction is gut rejection she believes it's fairly safe to take as an injection. The first dose will be done her office so if her belief is wrong, I'll be in the presence of someone who can begin immediate treatment.
The injections are painful both during and for about a day or so after. She's of the opinion that I've had pain for so long that this kind of pain isn't going to deter me the way it could some patients. I tend to be very cautious about drugs but in this particular case I'm comfortable trying. My folks will be at this first appointment and will be trained on how to do it properly. From what I've seen on YouTube, this goes in the upper/outer hip so it isn't something I can do myself very easily. Once they've learned and demonstrated how to do this safely, we'll be able to do this at home. This round will be twice a week for three months. After that we'll re-evaluate. I also have the option to discontinue this course of treatment and try something else should I decide that I'm really not comfortable with it.
Given the symptoms, the length of time I've been experiencing them, and the severity of them, her prognosis is 1-2 years of aggressive treatment. Her hope is that I'll regain some of my 'normal' lifestyle but cautioned us that I may never be 100% again. Before my dear loved-ones shout an expletetive at that thought, please keep in mind that all of this is happening for the good of God and He does have a plan for me and you in all of this. We just don't know what it is yet.
It has been about 10 months since Lyme was first suspected as the culprit in all of my health issues. In that time, I've "met" several other "Lymies" - some of whom have just been diagnosed. I'm amazed by the number of people who are suffering from some unknown disease that eventually turns out to be Lyme. I'm astounded by the sheer courage and mental strength I've seen among those who are fighting this disease. I'm amazed at how there are those in the medical, insurance and government communities who insist that we're all just crazy. Seriously, I wouldn't wish this life on my worst enemy.
The next few weeks will be pretty big in some ways and pretty boring in many ways.
I'm going to begin taking an amino acid that will hopefully help calm my nervous system so things that I can once again do some things that I used to take for granted like talking on the phone. That's a wait and see deal but it's something I'm very hopeful about.
We return to LLND in just under 2 weeks to learn how to safely administer the antibiotic. At that time she will also test for co-infections. Most people have these co-infections and never realize it. They only rear their ugly heads when one's immune system plate is over-loaded. She treats with the goal of minimal herxing, too.
Then in another 2 weeks we go back to LLND to check-in, get the results of the previous visit's blood work, and ??
In the meantime, I've got an email out to the folks at Under Our Skin and am rounding up a crew to host a community screening of the documentary in efforts to promote awareness. I'm not sure what the timeline usually is for something like this but it gives me something to do. Well, something productive to do.
I began reading the most recent book by one of my favorite authors. This book is one of several of her series so the characters are all familiar, as is the general story-line. I'm still struggling with comprehension (I notice I have an especially hard time when I come across the occasional error that slipped by the editors) but I enjoy her books so much that I'm not really willing to put it down and wait for the day when I can read once again. I'm also too stubborn to do that because that means it's one more thing Lyme has taken from me.
This feels like a rather random update but random and boring seem to be the norm for me these days. I'm a little freaked out and hopeful all at the same time.
At this point you may be wondering what you could do to help. And there honestly isn't all that much, although prayer is ALWAYS helpful. It would also be helpful if you could keep the following in mind that:
~ while I may look healthy, I'm likely just having a good moment. If that's the case you can bet I'm rejoicing for that moment, too!
~ if I get forgetful, start slurring my words, or have trouble getting my thoughts across I haven't suddenly become an airhead or started drinking, it's merely just "one of those things".
~ if you speak to me and I don't respond, I probably didn't hear you. I typically don't hear language well these days unless I'm face to face with the person who is speaking to me. If there's other noise (voices, music, television, etc.) then there are times that having an even remotely intelligent conversation with me isn't happening.
~ hugs are great! As long as they're solid. Featherlight touches are painful. Weighted pressure is painful.
~ I prefer to live in pain than live in a state of painful loopyness - which is why I won't take pain killers. Seriously. Even when my pain is the worst I've ever felt, I don't take anything. My coping mechanism for that is to remind myself that it's nothing like being nailed to a cross. If Jesus could do that, I can do this. Granted, He died on the cross but that's beside the point.
~ that going to the ER is not going to give me an answer, nor will it give me any comfort. ERs tend to be freezing. They have you strip down to almost nothing and give you a sleeve with sheets. Then they start offering you every drug under the sun and the moon. They might eventually get around to diagnostics. In the meantime, I get so cold the only remedy is to sit in a hot bath. If I have a broken bone, a wound that needs stitches, or something obvious, I'll hit the ER. If it's related to Lyme, not a chance. My experiences with hospitals has left me less than confident in their usefulness.
~ same goes for just admitting myself to the hospital.
~ the term 'better' feels like, and seems to be, a jinx word. Makes me feel like I'm not being taken seriously. Please do not use the term 'better' in conversation about this journey. Of course the goal is to "get better". "Are you feeling better?", "You look like you're feeling better", "Good I'm glad you're better", "What happened, I thought you were better?" and similar statements and questions are the most unsupportive things that have been said. I know that they're meant with good intentions but I'm looking at a one-step-forward, three-steps-back type of journey here and I'm a superstitious woman.
~ you're free to ask how I'm doing - if you want to know the real answer. The answer will almost always be "I'm okay." Which I've found can be a short and sweet phrase with a variety of meanings. It's never a lie (I'm not big on dishonesty) because compared to the alternative I probably am okay. I will usually follow it up with a brief explanation. Sometimes I'm feeling a bit dizzy, exhausted, drained, have a lot of brain fog, feeling pretty good. Other times it's simple thankfulness to not be bed-bound.
~ I've honestly never cared too much about my weight. Ironically, now that I've lost a lot I am incredibly insecure about my body. I realize this is irrational but it is what it is. Please, please, please do not comment on my body or my weight. Some comments and stares have left me feeling as though I'm nothing but an object. I know that in most people's eyes and hearts that's untrue. It's just those few who have ruined it for everyone else.
~ that I don't have a whole lot of stamina - for crowds (even small groups of 10), for noise (my fan sometimes is too much noise for me and it's fairly quiet), for physical exertion (good thing I've never been a mall rat because I have a hard time just walking from the car to the doors), etc. It really isn't that I'm an anti-social hermit. Living a life that 99% of the population considers normal is usually a sensory over-load experience for me. Exposing myself to too much for too long can send me into a tailspin for weeks. Too long can be just minutes.
~ I don't want, nor do I need, anyone to walk on eggshells. There's a fine line between respecting my limits and walking on eggshells. I don't have much advice to offer other than that.
~ that I'm fighting. Despite my limitations, I'm not going to live in a bubble. There have been so many days where I have been bed-bound and only able to get up to take care of basic needs that I've learned to LIVE in whatever moment I'm in. If you're at all familiar with LeeAnn Womack's song I Hope You Dance, you'll understand. I'm dancing. Even though I don't actually dance.
~ while I am choosing to live and dance (figuratively), there are some things that I won't do. Spending the day at the San Diego Zoo, going skydiving or river rafting, etc. anytime soon would probably not be in my best interests. Same goes for the growing list of foods that I'm known to react to. One of which is chocolate. Yikes! I know. I weigh my choices: if I do ____ or eat ____ then ____ is probably going to happen and will last for ___ days. Is it worth it? Sometimes it is. Sometimes it isn't. It just is.
~ pretty much everything I choose to do is weighed.
~ this disease could kill me. The treatment could kill me. None of us know when we're dying we just know it's going to happen. I could beat this disease in the way that everyone is hopeful and have many years left here on earth. If God uses this to call me home, I a) will have beat it because I'm finally whole and complete and pain free again and b) know where I'm going (do you?). I could end up living this alternative life until the ripe old age of 100.
~ I refuse to "suffer". I am not suffering from Lyme disease. I am FIGHTING. Charging rhino, remember? I am actually considering getting a lime green rhino tattoo. I just haven't figured out where yet. I did find a company online that makes temporary tattoos. I might do that instead. Less likely to react to the ink. Back to the subject - the fight is also weighed. I pick and choose my battles. Some days I rest. Other days I power through.
~ I have always been commitment phobic. There isn't a word to describe it now. I dislike making plans because I never know when I am going to need to cancel them. If I have to cancel/postpone/raincheck plans I feel like a liar and a flake! Most plans contain terms/phrases such as "That should work", "tentatively", etc.
That's about all that I can come up with at this point - which actually turned out to be quite a bit. Hunh.
I’m not sure when I contracted Lyme – it could have been while growing up, it could have been later on in life. Not all bites result in the tell-tale bulls-eye. However, judging by how long I’ve been symptomatic, I’ve had it for close to a decade, it's just in the last year or two that things really started to get wacky.
2010 (and going backwards)
I went in for a follow-up appointment with a doc in April. I had only lost 13 lbs since February. I was down to the lowest weight I'd been since high school - and down nearly 50 lbs from the heaviest I'd ever been.
In January I experienced some seizure-like episodes. One neurologist says they weren't really seizures because I was aware of them while they were happening. No theory on what it was or why it was happening though.
2009
Back in December (when things REALLY started getting frightening) I noticed that I was having a lot of difficulty with spelling - which is something I was normally quite accurate with. When speaking I couldn't think of the right words, even when they were literally right in front of me. If it was late and I was cold my speech would start slurring. My hands, feet, & legs started turning blue - not just when I was exposed to the cold but heat as well. I get some numbness and tingling in my arms and legs. My primary care doc said I needed to see a neurologist. The neurologists - well, I won't go there right now.
I had memory loss. Not just the "What did I come in here for again?" kind either. I've forgotten huge chunks of the last 10 years or so. I know this because every now and again a wisp of a memory will flutter back like a butterfly. Sometimes it stays and other times it flutters away again. That could be because of age. Except that at my age, I doubt I'd forget that my grandfather passed away earlier in the year. Yeah - for about 14 hours I thought that Papa was still alive and kickin'. Standing there washing a dish and WHAM! - holy coconut oil, Papa's gone to the big dessert bar in Heaven! Not quite the most comfortable of experiences. Shortly after that I couldn't figure out how many days were in a week. I was (somehow) convinced that there were 8 days in a week. The rest of me knew this was incorrect but I couldn't figure out what was going on. Even looking at a calendar and counting the days was unhelpful! I think I now know what amnesia patients feel like as they regain their memories and I think I now know what early Alzheimer's patients feel like when they notice something isn't right but aren't quite sure what.
I was also freezing all the time. 2-3 layers of fleece and sweats, extra blankets, those nifty heat-packs that you can toss in the microwave, and a beanie. That was when I was indoors, too. I know I'm a cold-blooded woman - I always have been. But this is getting a bit ridiculous.
Exhausted. Absolutely.no.energy. I didn't do anything all day except read. But I was exhausted. I'd be up until 2, 3, or 4 in the morning but need to sleep for 10-12 hours. Some wondered if it was depression. Makes sense given the turn my life took. Except I wasn't depressed. I was, however, getting frustrated. I'm too young to feel this old.
Back in early September I had to prep for a diagnostic procedure. Sparing you all the details, suffice it to say that my body did not tolerate the prep and the diagnostic didn't happen. What did happen though is dizziness, vertigo, memory loss, disorientation and similarly frightening symptoms/reactions. One theory is that through the rejection of the prep I just royally messed up my system. Ever seen a bobble-head doll bobble? Imagine feeling like that doll on a constant basis. I had to take Meclizine or Dramamine just to ride to doctor appointments. I've basically felt intoxicated for the majority of the last year or so.
Back in July I started getting these pin-point headaches. It's just a spot on the top of my head that feels like I've been stabbed with a knitting needle (Yes, I know what that feels like because I accidentally stabbed myself in the leg with one when I was 12). At first I thought they were just tension headaches because they'd start around 1700 and last until I fell asleep. When I woke up, they'd be gone until 1700 rolled around again. Then in August/September they'd start around 1300 and last until bedtime. One morning in October I woke up with it and it has never gone away. It's not a migraine, a hunger headache, a 'junk-food' headache, a stress headache or any variation of the above - I've learned the difference over the years. I saw a poster in one of the many doctors' offices I've been in that detailed various headaches and what fits best is "cluster-headache".
You may be wondering why this would be concerning - just take some Tylenol or another drug and move on. It's concerning because on a scale of 1-10 with 10 being the worst pain I've ever felt, these were at a 7. Tylenol wouldn't touch it. My migraine medication wouldn't touch it. Tried some heavier stuff but that just made me loopy and goofy but didn't touch the pain. Why put my body through the toxins of drugs that aren't going to provide any relief? Another concern is that when these headaches get worse they spread across the top of my head and forward in this web-like form. Then my hearing and vision start to dim. One second I can hear and the next second I can't.
Throughout all of this time I have seen 4 neurologists (although one was just for a diagnostic), 2 ENTs, an oto-neurologist, 2 primary care physicians, an acupuncturist (who was the first to suspect Lyme - and during the first 5 minutes of intake, too!), and a naturopathic doc. VNG (I think I actually experienced this twice), EEG, EKG, EMG, MRI, CT, and a slew of other alphabet tests, countless blood-draws, and still no answers. One primary care doc ordered the Lyme titer, which is known for being most inaccurate. Then she ordered the correct test but used a lab that is known for giving incomplete results. You might be wondering why I still suspected Lyme. Because it's the only answer that FIT. As one neurologist stated "There's nothing that is structurally wrong. You don't have cancer, MS, Parkinson's, or any other nasty illness. You just have a hyper-sensitive nervous system."
Really?! The fact that feather-light touch makes me cringe in pain, my diet is down to eggs, bread, potatoes, tea and water because I react to nearly everything else. I can taste food going bad weeks before it actually does. I can't watch television because it makes me woozy (I can sometimes watch things on my laptop - my thought is it's smaller, not as loud and so therefore isn't nearly as much stimuli). I can't talk on the phone, attend church or other indoor functions, or anything else that's even 'remotely' loud because it sends me into a tailspin and I'm down for weeks. Most perfumes and cleaning products close my lungs up. Yep, I have a hyper-sensitive nervous system.
I was also handed a variety of prescriptions - some that were even known to cause allergic reactions in patients with one of my drug allergies. Most of those I just used as bookmarks.
Here's my thought on drugs: I will use medication to treat a known ailment. An example being thyroid. I have a funky thyroid. Medication makes it function properly. Totally willing to take that medication. I will not take something 'just to see if it works' and is therefore a diagnostic tool. Throughout most of this experience I've come to the conclusion that many doctors (note: I did not say all) are nothing more than legal drug dealers anymore.
Most of these experiences have just manifested over the last couple of years. The sensitivities - for as long as I can remember. People use to think that I hated having my feet tickled as a kid when in reality it sends hot searing pain all the way up to my head. Folks thought I was just a picky eater. Since I've never been one who was concerned about my weight, it isn't likely that I'd make myself vomit the meal I just ate. Many foods just don't settle.
A person really shouldn't have to go through the experiences I've been through just to find out what is wrong.
After years of being unwell, a year of diagnostics with ‘normal’ results, and 10 months of being bed-bound 90% of the time I FINALLY have a diagnosis. Lyme disease.
I decided to create this blog for a few reasons.
1. One symptom of Lyme is memory loss. This way, I won't have to remember who I included in my last update (or didn't include).
2. Another symptom is a hyper-sensitive nervous system. I haven't been able to use the phone without pain since April. Actually, over the last several years there have been times when the phone was painful. Now it's just excruciating. I can write though (please excuse all spelling & grammatical errors!) Writing tends to be a good form of therapy.
3. Those family and friends who WANT to stay in the loop can do so here. Those who just want to know whether or not I'm alive can drop me a text.
You may be wondering how I came up with TeamPersy. James 1:2-4 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking in anything." When I think of 'perseverance' I think of a rhinoceros. Really, what would stop a charging rhino? I decided I would find a stuffed rhino that I could cuddle up with on those days when I'm feeling horrible. I was going to name this rhino Persy (short for Perseverance). Days after sharing this with some of my dearest friends, I received a stuffed rhino. The Team comes from those who have been praying for a diagnosis, a treatment plan, wisdom, comfort, guidance, helpful answers, and everything else.
That's it in a nutshell. I started to write quite a bit more and realized it was going to be a whole vat of nuts if I kept going so I decided to break it up a bit.
, something to help break down the biofilm, the chill pill, an immune booster/adrenal support and 
(10 capsules in all) plus 5 drops of 
. I also mix 3 homeopathic remedies into a tea and drink that. They're supposed to help with pain/inflammation, adrenal support, and nervous system. If it's Day B then I take probiotic B, wait an hour and then take the rest of these items. I usually eat about this time, too. 
