MY FOUR MONTH TREATMENT UPDATE

Instatus 29-03-2014 23:21

This week, I had my four month follow-up via phone consultation with my Lyme Literate Nurse Practitioner. I had spent much of 2012 and 2013 bedridden and unable to perform most of my activities of daily living. I required the assistance of my husband for most everything and I estimate I was functioning around 5% of my normal self for nearly a year and a half. I have written a few posts describing those dark days and grappling with the reality that Lyme Disease was slowing stealing my life. Somewhere between late October and mid November, I reached a point of desperation as the treatments I had been trying with my previous doctor had yielded no results. After reaching out to others in the Lyme community and hearing their experiences, I decided there was still enough hope and fight in me to once again look for a new practitioner to treat me.

Enter Nurse P.  I had known about Nurse P. for several years. Her story is much like mine where her initial symptoms presented as a bladder condition and then eventually progressed to the point where a series of tick borne infections were identified. I felt that since Nurse P. had experienced both my bladder condition and Lyme Disease herself, she would be the right person to develop a new plan of attack for me. I had my first phone consultation with her in mid October. She ordered a series of tests including vitamin D, CD 57, a urine culture, 23 and me genetics testing, Adrenal Stress Index and a blood stain from Fry Labs. By mid November, all of my test results had returned and the picture of what I had been dealing with for nearly a decade, finally became clearer. I was both happy to have some answers and overwhelmed by the long road that now was in front of me.

Nurse P. confirmed an abysmal vitamin D level and a very low CD 57 indicative of the Lyme bacteria, Borrelia burgdorferi, and an immune system that was slowly being drained. The blood stain from Fry labs showed evidence of the Lyme co-infections, Bartonella and Protomyxzoa. Finally, the 23 and me genetics results revealed MTHFR and COMT mutations reducing my body’s ability to perform methylation making me feel even more fatigued and impairing my liver’s detox capabilities. Armed with this new arsenal of information, we were ready to put my treatment and detox plans into action.

Areas of Improvement:

1) I have been treating with a combination of medication, supplements and herbal antimicrobials from the Cowden Protocol. When I began treatment, I had a very poor tolerance for any sort of medication or supplement and would often have a bad reaction or major set-back. Thus far, I have slowly been able to increase all medication, supplements and herbal antimicrobials without any set backs.

2) I have been able to effectively manage recurring herxheimer reactions, an intensification of symptoms caused by an increase in the body’s toxic burden when the Lyme bacteria die, throughout my treatment by implementing a variety of detoxification strategies.

3) I have a slight decrease in the burning sensation I often feel in my brain and spinal cord.

4) I notice an improvement in my mood and my sense of optimism.

5) There is a small reduction in my sensitivity to sound. I can talk on the phone, watch a movie and listen to music with the volume at a reasonable level.

6) I am able to get out once or twice a week for a few hours at a time. This generally involves going to the grocery store, acupuncture or the chiropractor.

7) My vitamin D level has now improved to a healthy level.  I am very happy I now have one area in which I can say I am “normal.”

These are the areas I HOPE will continue to improve over the next 4 months:

1) As we increase the killing power for the infections, this phase of treatment is proving to be more difficult to tolerate than the previous 4 months.  Over the next 4 months, I would like to be ble to work up to the full doses of the antimicrobials I am taking.

2) A recent blood test indicated hypothyroidism, which may very well be contributing to my fatigue and need to stay wrapped up in my infrared heating pad 24/7.  Rather than giving me thyroid medication, my Nurse Practitioner believes I may in fact I have an iodine deficiency and that my thyroid is lacking in the raw materials it needs to make adequate levels of the hormone. I hope to have my thyroid in a normal level in the upcoming months.

3)  I hope to be able to increase my b12 levels as they are low as well.

4) I hope to regain more energy and stamina, although this symptoms seems to be among the most stubborn of all of them.

5) I would like to see my ability to sleep improve as well as my ability to nap return.

6) I would like to begin implementing a condition program to try to regain some strength.

My four month consultation ended with Nurse P. saying, “I just want you to know I am so proud of you and all of the hard work that you have been doing. I believe whole-heartedly we are on the right path. You have done all that I have asked of you and more.” I too am proud of the commitment I have made to myself to continue on the path of wellness and hope that my efforts are rewarded with better days ahead.

In an effort to protect the identity of my healthcare practitioner, I have chosen not to use her name. I hope one day, all health practitioners are able to treat Lyme Disease freely and openly without undue scrutiny, but sadly, such is not the case yet 2014.

EMERGING AGAIN

One of the most heart-wrenching realizations I have ever had to accept was the fact that I was not well. For years, I agonized over this truth.  Slowly, I was being swallowed up by a list of unexplainable symptoms that insidiously began stealing life’s joys and highs from me. I thought I was doing everything right. How had my life taken this path?  Why was I unable to help myself despite having spent nearly a decade helping others? Would I ever be strong enough to heal from my illness and enjoy life again?

Failure, that overwhelming presence of insufficiency, in my life was never as strong as it was the moment I said my final goodbyes and left work.  A large portion of my identity disappeared that day.  I believed rest, a few select medications and supplements would help me regain my energy, but one year into treatment, it became apparent that this would not be the case.  As relapse after relapse occurred, I became more fearful that exerting any amount of energy would cause me to go further into the depth of my illness.  Moving, talking, laughing, listening–nearly everything became my enemy as all forms of stimulation became an energy zapping experience.  More and more, I was becoming my illness.  Lyme Disease had brought me to a frightful place and I could no longer imagine what it might be like to live life with it, yet still pursue happiness.

If I close my eyes, I can imagine myself fearfully lying in the bed for months on end.  After all, I am not yet far removed from such days.  I recall a sad time late last fall at my doctor’s office.  While sitting across from my doctor, I tearfully told him that a full recovery was not likely, but at the very least, I hoped for a day where my mind would be filled with thoughts other than Lyme Disease and sickness.  Indeed, my expectations had become quite low.

Two weeks ago, I caught myself pondering some new thoughts.  As I thumbed through the food in our pantry, I recognized my head was filled with ideas about the future and questions like “where will our first vacation be when I am well enough to travel?”  The mental milestone that I had been hoping to one day achieve had, without a doubt, been conquered.  What was it that had shifted my thought process so I was able to dream?  I realized that somewhere along the Lyme Road I allowed myself to like, even love things again.  I gave myself permission to find me once more in spite of the struggles I may be having.

Much to my pleasant surprise, I have not relapsed and continue to slowly grow stronger and braver.  I am finding that my sense of humor is returning, that I have an addiction to quirky-patterned button up shirts and my voice as an advocate for this illness is quite loud and clear.  I will admit that rediscovering myself through this illness has been scary, but I truly like the person I see emerging.  Yes, I have a chronic illness, but this illness no longer has me.

#EmergingAgain

10 SIMPLE EXAMPLES: CHRONIC ILLNESS AND QUALITY OF LIFE, PART 2

In last week’s post, I suggested that rather than seeking to solve or being critical of the persistent list of symptoms that those with a chronic illness may endure, a different approach may be more beneficial.  I proposed the idea that by displaying empathy, love, kindness and compassion, you can help improve the quality of life for your loved one.  I would like to emphasize that a few simple actions can help sustain those of us on the long and grueling road of chronic illness.    

Below are ten examples in which others have demonstrated simple acts of empathy, love, kindness and compassion towards me that have encouraged my heart as I battle Lyme Disease.

1.  Several people have taken the time to ask me about my illness.  It is always okay to ask me about treatments I’m undergoing or have tried, whether or not they have made me  feel better or worse and how long I will be on those treatments.  Please continue to ask.  I will never fault a person for not knowing the “Lyme lingo.”

2.  A few friends and family members have connected me with other Lyme sufferers that they knew about from their churches, work, etc.  I have met some wonderful people this way and have made some great friends even though I have not yet met any of them in person.  We are able to ask questions about treatments and symptoms to one another and that has allowed me to form relationships with people that do carry the experiential knowledge that many of us desire.

3.  One friend took the time to mail me an article she had seen in a local newspaper about Lyme Disease just to make sure there was not some new information being released that I had not yet heard.

4.  A few friends surprised me with well thought out care packages while I was still bedridden and unable to leave my home.

5.  As soon as my mother had heard my doctor suspected Lyme Disease was at the root of my health issues, she immediately downloaded some ebooks to her Kindle and began reading about it.  She knew from the stories of others that the fight to regain my health would take a very long time.

6.  Both my wonderful mother-in-law and my best friend had taken on the task of walking my dogs twice a day for nearly two years while my husband was working because I had been much too weak to go up and down the stairs or hold the dog’s leashes.

7.  My amazing husband has enthusiastically celebrated every victory, every milestone with me from my first days out of bed after a year and a half to my first trip to the Farmer’s Market and everything in between.  We have made a tradition out of capturing those moments and commemorating them with a pic on Instagram.  Rather than feeling sad about what I may have missed, I feel victorious about what I have just accomplished.

8.  My friend has offered on a few occasions to help me clean and organize me house.  When you are ill, cleaning and organization are two of the first things that usually fall to the wayside.

9.  My acupuncturist has generously remained flexible with her scheduling of me.  She recognizes the severity of my illness and decided she would not implement her cancellation fee in the event that I would cancel my appointment with less than 24 hours notice.

10.  Since I began posting more about my battle with Lyme Disease, I have many friends, family and even my doctor who have taken time out of their busy schedules to read my blog and post a comment.  This is very touching to me as I now know that there are many people who are rooting for me in the quest to conquer Lyme.

Please remember: A few simple actions can help sustain those of us on the lingering and unpredictable path of chronic illness to experience a better, more fulfilled  quality of life.