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
