Marching Forward

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.  
• The Navy's 25th Annual Bay Bridge Run/Walk benefiting the Navy's Morale Welfare and Recreation programs.  
• The 9th Annual May Ride benefiting Home Front San Diego. 

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

Jumping Back On Track

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 Vixen  Upcycled 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

January in April

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

With Every Leap Forward, There's a Stumble Backward

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.

What My Treatment Looks Like

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!

The First Month of Treatment

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?!