Today Dan and I took a second trip out to New Jersey to see the Lyme Specialist. Many have asked questions over the last month so let me start by answering a few:
My most asked question...YES, I have started treatment. It has been exactly one month since I started the antibiotic treatment. To answer my second most asked question....YES, I can feel it is doing something as I am having some Herx reactions which is good but no real improvement is expected for quite some time as it takes many months or years to see major changes. Instead I get to look forward to a whole new list of symptoms that will come and go as the antibiotics slowly kill off the bacteria that has spread all throughout my body.
One of the other popular questions and a good one is, "Does the Lyme diagnosis mean you don't have Epstein Barr like the doctors thought?" Actually...NO. I do have the Epstein Barr virus in my body as it still comes up positive on my blood work and it is on active levels in the blood. It is very common for Lyme patients to have several other viruses and bacterial problems so it is one of the thing effecting me but it is the Lyme causing all the major problems I am dealing with. For this along with the symptoms from the Lyme Disease I have begun seeing my Homeopathic doctor regularly along with the Lyme specialist.
Here are some of the things the Lyme Specialist told me today:
* I have tested positive for additional tick born bacteria in my body along with the Lyme bacteria. This means he will be targeting each bacteria with very specific antibiotics.
* He has started me on a second antibiotic. So now I am on two different oral antibiotics a day. He is hitting the bacteria harder this month and hoping for more Herx reactions. (see my last blog for an explanation of the Herx reaction)
* I have been having chest pain and pain down my left arm over the last three days. My heart races regularly and I am short of breath at least 50% of the time. These are all symptoms of the disease as the bacteria can attack every organ of the body and the heart is often one of them. I also have a heart murmur. All that to say that he is sending me to a cardiologist to have an echo cardiogram and maybe a stress test to check for damage or further problems. I will let you know what happens after I have those appointments. Needless to say...even if it is a part of the disease it is a very scary symptom!
* I will see him again in a month.
I want to give you an overview of how I am doing as I know so many have asked and really do want to know how I am feeling day to day. This is my new normal:
Physically:
Night: Insomnia, pain and difficulty breathing (usually can't sleep till after 1:00am and can be up till 5:00am on my worst nights)
Morning: Waking is very difficult as it comes with extreme weakness, pain and pressure on my chest (can take up to an hour just to rise out of bed)
Days: Are up and down. I gage how I am doing not by the day but by the hour as my symptoms change constantly. If you ask if I am having a good day I will usually say "I am good/bad right now" the rest of the day, who knows!!! Most days I experience some or all of the following:
* pain behind my eyes
* facial and upper body muscle twitching (like palsy)
* difficulty breathing
* extreme weakness
* extreme fatigue
* difficulty walking or unable to walk (in a wheelchair when we go out at least 90% of the time)
* pain in my teeth & jaw
* pain in my joints especially knees and hips
* pain in my bones and or muscles throughout my body
* pain in my chest and left arm / heart racing
* mind weakness which effects talking, writing, memory and anything that requires thought (so now you have to excuse any of my mistakes in this blog!!)
* most days I still cannot be left alone with the kids as I am unable to care for them fully
On a positive note my good days are better than they where. Even though I do not remotely appear as my old self on these days, I feel I have been given a little reprieve from symptoms with small amounts of energy to accomplish some household tasks, run an errand with the family or play a little with the kids. I had some very special celebrations with family and friends over my birthday this month. God gave me enough energy to enjoy them and for that I am very grateful!!
Mentally:
This is obviously a lot to take in and deal with all though it has been going on for 7 months and of course the 17 years before that. With a diagnosis comes some relief mentally and on the other hand makes you face the reality of what you are dealing with. I have done a lot of reading and research over the last month and have been overwhelmed with what I am learning about the disease. This disease is very serious at the stage I am at and it is equally complicated!! It was a hard month for me to blog because I did not know how to take it all in and process it myself far less try and put it into words to explain it to others. It is still hard. In all honesty I have good and bad days mentally and that is ok. I know my God is steady and unchanging.
Spiritually:
Dan and I feel all the prayers and know God is covering us with so much grace during this time!! We want to thank each and every one of you who are praying and ask you to keep on praying as this is a long hard road. I am leaning more into the Lord daily and trusting Him in each circumstance. We have many decisions that need to be made as we figure out how to continue life during this healing process. We covet your prayers!
Financially:
We now know that our monthly visits with the Lyme Specialist will cost us $80 plus travel. We have not had the chance to really figure out the full financial weight of this but hope to get a better handle on it over the next month. We have seen some wonderful gifts come in that are helping us move forward and we are so grateful for each and every one! Our primary goal is to increase our monthly support so we can cover these extra medical expenses over the next few years and not accrue any major medical debt. Dan is working on this whenever he can but balancing me, the kids, daily household chores, YWAM, All Access and fundraising all at once is overwhelming. Again, we covet your prayers!
I think that is more than enough info for now. I will do my best to blog more this month and hopefully be able to share my thoughts as well as what I am learning. Thank you again for all your love and support! A special thanks to my parents, sisters and friends here in New York who continue to drop everything at a moments notice to help us...we could not make it through this without you!!! It is appreciated more than words can express !! All our Love!!
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