It has been awhile since I spoke of Amanda, my daughter with CLD. She has had active disease since she was 15 and will soon be 37. As I look back on this journey with her for the last almost 2 years, I remain optimistic that she will completely heal.
Amanda has been bedridden for the last 5 months. For the first part of her treatment we tried oral antibiotics, a binder, probiotics, multiple supplements, some homeopathics, and herbal tinctures that target the different infections, but nothing worked. Her GI tract was riddled with Bartonella, causing horrible nausea and vomiting, and she had leaky gut. From September 2010 to September 2011, we visited the ER 17 times because she became dehydrated from vomiting out of control. Seven times in that year she was hospitalized. Each time I would plead with the hospitalist to treat her for infection with either Rocephin or Gentamycin and each time I was refused. "Your daughter does not have Lyme disease as it doesn't exist! Let's call in the therapist". The last time she was in the hospital we had to deal with a particularly challenging young MD who had been involved in her care there at least three previous times. Amanda was so distraught about having to "be at his mercy" that I took her out and we never looked back. Now I have emergent IV meds at home in case her vomiting gets out of control again. Fortunately, we have avoided this by ensuring that Amanda receives her meds every four hours around the clock. With the PICC line I am able to keep her hydrated and give her extra nutrients. We are treating her with IV antibiotics and it has made all the difference.
Once I realized that the current health care system was not going to help her, and we started to treat her at home, she started to turn around. It was scary to start the antibiotics at home initially. Dr. Nathan and Dr. Gordon are supportive and helpful, which gave me the confidence to proceed, but it was still scary. What if she had an adverse reaction to the meds? Or she started to herx so bad that I couldn't control her symptoms? But I knew if we didn't do it she would not make it so it was a no brainer to proceed. We, my incredible husband, and a friend, Emily, and I stood around Amanda and blessed the medicine and it's effectiveness and away we went!
We have completed two rounds of Gentamycin, which targets the Bartonella primarily, but also targets the Chlamydia pneumonia, Mycoplasma and Lyme a bit. During the first round her joint pain increased and her nausea almost went away. it was the first time in over a year that much of her energy was not wasted on stopping herself from throwing up and she started to really rest, sleeping deeply for up to 18 hours a day. The second round the nausea came back but the pain decreased. Instead of 8/10 pain, even with morphine, it is now consistently a 5/10. She no longer has severe abdominal cramping and sharp shooting pains. Her mind is clearing and she is more present when she is awake. Her world is not as small. Her daily headaches are less and the sharp-shooting nerve pains are gone from her legs, feet, arms and hands.
Now we are using Rocephin which targets all the bacterial infections, but especially the Lyme, Mycoplasma, and C. pneumonia. We will be using Flagyl and Rocephin in a pulsing manner to get at all forms of the Lyme. We are giving IV Phosphatidyl Choline daily for use as a binder as it helps to remove cellular debris and supports the liver. We are making progress.
Now she needs to gain about 15 pounds, eat more protein and alkaline foods.
Amanda must work on the emotional, mental, psychic and spiritual issues to clear them. She will not get well unless this is accomplished.
From this experience I am learning to move past my own anger over how Lyme patients and their families are treated. The truth is the current system does not get it yet, so it is necessary to work around this denial. As a group, the Lyme community is strong, supportive, discerning, courageous, full of love, and compassion. But many are still stuck in their rage. Rage that their illness was not treated in time to prevent CLD and all the suffering that goes with it. Rage at the ignorance of the current health care system and the IDSA. Rage at insurance companies for failing to cover expenses that having insurance should cover. Rage of family members as they watch their loved one suffer.
Anger keeps us in fear and enslaved. It keeps us stuck. It steals our personal power and our life force. It stops us from moving forward and into love. We are either in fear or love. While fear takes away personal power, love gives it back. By forgiving and moving past the anger, we are able to heal and move past the limitations caused by CLD and the trauma that is a part of it. Love empowers us, not just to stand united and demand proper treatment and recognition, but in our everyday lives in every moment. And, individually, by moving past all the trauma we get to heal, completely heal all parts of our being. The spiritual and emotional must be addressed in order to heal. I have stated before that I have not met anyone with CLD who has not experienced some type of significant trauma-abuse of any kind, loss of a loved one, physical trauma, or severe physical illness that precipitates the expression of CLD. This must be resolved. By staying in anger this cannot happen. Find some way to get past the rage and into a state of love and forgiveness, and in doing this, reclaim your power.
One last comment I wish to share is this: It is time for the world to learn about CLD. If those that are unfamiliar with the danger of a tick bite become informed then CLD can ultimately be eradicated or, at the least, relegated to a very small percentage of the population. If providers are educated about the necessity of 6-12 weeks of antibiotics after a tick bite or the first signs of symptoms then CLD doesn't happen. My fervent desire is to spread the word and increase awareness so that people can learn to demand proper care after exposure to a tick bite. Since the health care system is not responding to the epidemic, then as individuals, we must. Let's shine the light on this so awareness grows. Let's save some lives!