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