Status update

Chris’s Lyme test came back from Advanced Labs positive for Lyme disease. In early 2012, before antibiotic treatment, it took  three months for sufficient spirochetes to grow in order to confirm the diagnosis. This time, six months after termination of treatment,  it took just a few weeks.  This suggests to me that, after antibiotic treatment, the Bb was more active! Did our “successful” year long treatment with three oral antibiotics simply kill most of the Borrelia burgdorferi  while selecting out the more virulent organisms and allow them to add to any already-existing biofilm? They call it persistence. All bacteria do it. Apparently Lyme does it with a vengeance. From the vantage point of the spirochetes, what doesn’t kill you (Bb) may make you stronger. This raises interesting questions vis a vie the IDSA (Infectious Disease Society of America) and ILADS (International Lyme Associated Disease Society). The former says Lyme does not persist. (Chris’ symptoms would be caused by a condition called bipolar disorder, not his immune response to chronic Lyme disease and other pathogens.) ILADS  says it does persist. IDSA says long term use of antibiotics don’t help. ILADS says they do. I know that Lyme diseases persists and does respond to antibiotics. However, no one has claimed that antibiotics can cure Bb. I am beginning to suspect that antibiotics help, as do psych drugs, but neither is curative. Chris has been holding his own. He has come close to mania several times, but with the help of family, and caregivers, he has been able to hold a job and stay out of the hospital.

He does not want to start antibiotic treatment again.   He says he can always take more Haldol if he starts to become psychotic. There is no question that the Haldol helps. Besides antagonizing dopamine receptors, it lowers kynurenic acid and facilitates restoration of the blood brain barrier that is compromised by infections. As I write in Beyond Mental Illness, it even inhibits the spread of some pathogens.  However, over time, it can cause brain damage and increase the risk of Parkinson’s disease.

For 19 months he took the antibiotics and was fine. In November, Advanced Lab testing  found no evidence of infection. (See previous blogs.)  His psychiatrist, my wife and I all noted how much more mentally clear he was while taking the antibiotics. He was doing so well that his psychiatrist eventually stopped his Haldol. But then he went on to have two more episodes, one in August 2013 and one in November 2013.

Is there a middle ground where Chris and I and his psychiatrist can meet? I read of a woman who, after 30 years of Lyme disease,  was treated with a high temperature regimen(about 106). She claimed she was cured. I read of rats whose response to infections was 1000 times more effective when nanosilver was added to antibiotics. There have got to be better treatments out there.

Chris, based on your comments it is clear you still view your illness as a spiritual malady. I believe many people still have this mindset.  I warn readers of that point of view in 10 Ways to Keep your Brain from Screaming “Ouch!”  Frankly, I don’t see much difference between your view that the Devil caused these dysfunctional thoughts and the mainstream idea that you had these thoughts because of “bipolar disorder.” The “villain” is not the Devil, or the “mental” illness. It is the myriad of biological processes, including your immune response to pathogens, that can compromise your emotions and thoughts.  I’m glad that your faith helps sustain you. However, if your faith in God or in your psychiatrists prevents you from finding more effective targeted treatments, then it becomes harmful.

At this point, while I understand some of the biological processes needing treatment, I am starting to doubt the long term  effectiveness of antibiotics. I’m convinced they helped you, as has Haldol.  Yet I persist in believing that treating all your relevant biomarkers (discussed in Beyond Mental Illness) will be curative. I still believe that proper nutritional intervention can be helpful, in some cases curative over time. You still see your illness as a spiritual one involving sin. The word “sin” literally means missing the mark, like when you shoot an arrow and it misses the target. We are sinning (missing the mark) on your treatment. The mental health establishment is sinning (missing the mark) with you and thousands of patients who could be accurately assessed and effectively treated.  Based on your history, when your  “spiritual” orientation dominates you, I become more anxious.

Mine is clearly an uphill struggle, with you, your psychiatrists, and, the mental health profession.  I can only hope that folks will be open as research continues to support the need for individualized assessment and treatment.