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.