Update on Heather's Lyme Disease

I know - I lied - my previous post said I wouldn't be blogging for a while.  Oh well - let's just say the more I learn, the more anxious I become.  When my mind is spinning at night with all the information, putting pen to paper (fingers to keyboard), helps me to put things in proper perspective.   When I am drafting these blogs, I feel like I word vomit and spill out all my feelings, medical information, and frustration with the establishment.  I usually laugh when I re-read the initial draft.  It is then that I take the time to stay focused on the positive and all the things that we can control.


As I have mentioned, Heather was diagnosed with Lyme December 2014 and received a six week IV PICC line treatment.  That is all that is allowed by the guidelines set by the the Infectious Disease Society of America (IDSA).  In my mind - Heather was cured.  Sure it would take her a few months to recover and regain her strength and energy, but I was unaware then that Lyme is a very complicated disease and it is very difficult to kill the bacteria.  Remember, there isn't a cure.

Back on topic -  last week was a HUGE week for Heather.  Sadly, she has been suffering a lot with her Lyme symptoms, so this meeting with her Lyme Literate Medical Doctor (LLMD) couldn't  have come at a better time.   She finally received confirmation that her Lyme Disease is chronic and will require extensive treatment.  The meeting was enlightening, overwhelming, informative, factual, and  honest.  Heather loved the medical team and has 100% confidence in them.  She is ready to take on this unknown next phase.

In the six weeks leading up to the first treatment, Heather will be having several scans and tons of blood work to determine and better understand the negative effects on her body (brain scans, organ scans) and to get a baseline.  Fortunately they will be able to compare some of these test results with testing from 2014 when she was first diagnosed.  As we have shared before, Heather's nerve damage is getting worse (was confined to feet and is now moving back up the legs), her brain fog/memory is worse, and she has some other health issues that we will share at a later date.

The best thing is that her medical team has a plan for her.  We know that the next 18 months will be a difficult journey, but a journey that is necessary.  Heather is known for her signature Live, Laugh, Love, Lyme - she is ready to just Live, Laugh and Love.  Lyme needs to be dropped.

For the next few weeks the medical team is changing her nerve medications to provide her the best nerve relief possible which will allow her body to get ready for the treatment.  They are adding about 20 vitamins and supplements and changing her diet to gluten free.   Bottom line, they are trying to prepare her body, control her pain, allow her to rest, then begin the treatment to attack and eradicate the bacteria.

Sounds pretty simple doesn't it.  Sadly it isn't simple at all.  However, I am confident that Heather is being seen and treated by one the best Lyme doctors in the world. 


I will save my personal and political comments about the need for changes to the CDC and IDSA guidelines which are out of date and don't acknowledge the need for long term treatment and don't allow insurance companies to cover the expenses for Lyme patients. 

I do know that I will be writing letters to politicians asking for them to carefully review any Lyme guidelines/bills and that they reach out to Lyme infected constituents to get a reality check about the emotional, physical and financial toll that Lyme patients must deal with.

Live, Laugh, Love, Lyme ........and please say prayers for my Heather.
xo
Lisa

Big Day March 9, 2016

Heather will be seeing a Lyme Literate Medical Doctor (LLMD) March 9, 2016.  They will review her medical history and determine the best treatment plan for her.

Prayers, positive thoughts, and love please. I am determined to make sure that Heather gets the best care possible.  She is my everything.  I love you Heather.  We will beat this disease. 

xo
Lisa

Until I write again..........

Banner that we will carry during our May We March for Lyme 
Rally at the Lincoln Memorial

To anyone that has been reading my blog, thank you.  I have tried to stay positive and upbeat about Lyme and put that happy spin on Heather's health and life.  Heather is a fighter and I am hopeful that she will beat this nasty disease.  The last 16 months have been a whirlwind.  Life sometimes hands you more than you think you can handle.  I have learned to never say "can it get any worse"?   Yes, it can.  

This quote sums it up beautifully:

“You never know how strong you are until being strong is your only choice.”

Heather is strong.  

Before I sign off for a bit, I wanted to thank you for reading and hopefully sharing what you have learned about Lyme disease.  As I have said before, if it is quickly detected, an easy and cost effective treatment and recovery is possible.  

Remember, each year an estimated 300,000 Americans are diagnosed with Lyme disease, and the prevalence is rising.  That number is staggering.  However, the most mind blowing thing to me is how difficult and expensive it is to get the proper diagnosis and treatment.   

There are two Lyme documentaries if you are interested: Under Our Skin, and Under Our Skin 2: Emergence.  They are tough to watch, but the latest one offers hope.  The patients that were followed in the first documentary have regained their health and lives.

In a perfect world, Heather would have never been infected with Lyme.  Heather and her boyfriend would be like any other 30 something couple -  working, traveling, and going out with friends - burning the candle at both ends.  Heather wouldn't be dealing with fatigue and debilitating pain that leaves her curled up in bed for hours.  Kevin has been supportive, patient, understanding, loving, and he makes her laugh.  Such a blessing that they both ended up at the same party in the fall at the beach. 

The next six weeks are big for Heather.  She is closing out her residence in NC and NYC.  That requires visiting both cities, catching up with amazing friends, packing, than hauling a lifetime of stuff to Falls Church. 

In addition, she will be seeing two new doctors -a highly recommended Internist and a Lyme Literate Medical Doctor (LLMD).  We can't predict what the treatment will be, but it may involve an aggressive mix of antibiotics, new meds, herbs, dietary changes, etc. I need to focus on Heather and of course all of the other daily responsibilities (job, family, etc.)  

Heather is venturing into an unknown treatment plan and duration.  We are confident and hopeful that Heather will be better once all is said and done.  If you want something to work, the first thing that you have to do is believe in it. The second step is to trust it, and the third is to commit to it until what you believed would happen becomes a truth.

One of my reasons for not writing every few days on the blog is that Heather has final approval about what I have written.   She is already living this reality, she doesn't need to read about it during her treatment.  Of course, I will be providing some updates about Heather - but I have no clue how often I will be posting.

My future blogs will be about her treatment to help others learn what worked and didn't work for Heather.
 
Heather is ready to start a new life and career in DC, however she is well aware that she needs to be healthier to accomplish this.

I appreciate all the kind words.  I appreciate that my blogs have been read by thousands of people all over the world.  I am humbled beyond belief.  Heather and I both don't want to talk about the daily woes of being sick.  We have both seen how the media has supported and attacked Yolanda Foster about her Lyme journey.  She is either portrayed as being brave and honest, or being dramatic for reality TV.  

It is because of "celebrities" that Lyme disease is getting more media attention.  I am sad that it took someone famous, but I am glad that now maybe this disease will starting getting the attention it needs for more research money, better testing, and ultimately a cure.

My closing advice for now will be to never take what you have for granted, be thankful for family and friends, work hard and play hard, and pay it forward and help someone else less fortunate or in need.  

So for now I say "until I write again."  

May the next few months bring good health, happiness, and love to all.

xo
Lisa

P.S.  You will be hearing from me in May during Lyme Disease Awareness Month.  Please check out the following link for an event in DC http://www.themaydayproject.org/


Enjoy these cute pictures that make me smile.

Kevin and Heather

Heather and Andrew (best friend)

Anticipating the celebration that Heather is cured

Mom, Dad, and Jesse (we would be lost without their love and support)

live, laugh, love , lyme

Heather and Pearl

Lyme Awareness Patio

Summer of 2015 - living at the beach

Crazy winter hats - they helped this year

My beach bum

2007- What happened in Cabo stayed in Cabo!