No News is Good News

Posted by on Sep 25, 2012 in Dave's Blog | 2 comments

Chris is doing fine. He takes the Byron White formula A-L Complex, psych drugs and a number of supplements including EMPowerplus. He has been on an aggressive antibiotic regimen for about two months now. We waited to start it until we got an EKG to get some baseline data since both Haldol and these antibiotics are known to increase risk for heart attacks.
The antibiotics he is taking include Azithromycin, Cefdinir, and Tinidazole, the latter for two weeks on two weeks off. As Dr. Z explains, one kills the spirochetes, one kills the cyst form and one kills the cell wall deficient form. (Borrelia burgdorferi is pleomorphic. It morphs into different forms depending on the environment.) The medications also kill C. pneumonia as well as a number of mycoplasmas he has. We now know that when Chris was treated with IV Rocephin years ago, it killed spirochetes but didn’t touch cysts and cell wall deficient forms. The cysts are metabolically inert, until they unwind out of their shell and form spirochetes again. Cell wall deficient forms are more difficult to kill because most antibiotics attack cell walls. For that we need to inhibit production of the proteins that comprise the cell wall deficient forms. This is a long term proposition. It is not a sprint. It is a marathon.
In the past there has been no way to determine if the treatment has rid the body of these microbes. In the future we will be able to tell if the Borrelia burgdorferi are still present through the Advanced Lab’s test.
I suggested to Dr. Z. that the antibiotic Minocycline has proven to be highly effective with psychosis and depression. In a recent study it reduced the need for Haldol from 20 mg to 2 mg a day and lowered the Positive and Negative Syndrome Scale (PANNS) from 40 to 20. Suggested it might be good to change one of the antibiotics to Minocycline if it is as effective against Borrelia burgdorferi as what he is taking now. Chris didn’t want to rock the boat so we are staying with the current treatment. For all I know these other antibiotics may be just as effective. They just haven’t been tested in this patient population. I discuss the role of Minocycline in treating both depression and psychosis in Beyond Mental Illness which, now will be published in 2013. The interesting question is whether the benefit of Minocycline is just from reducing inflammation or reducing of inflammation by killing pathogens.
I expressed some concerns about how Chris was going to take two antibiotics and probiotics since it is hard enough to get him to take them twice a day. Dr Z said that antibiotics are absorbed through the stomach and probiotics are absorbed much later in the gut. He said they could be taken together. I had never heard that before.
Chris’ new psychiatrist is willing to reduce Haldol from 5 to 4 mg a day.

2 Comments

  1. I wish you and your son, Chris, the best of luck in terms of his health and recovery. I, too, am living proof that infections can wreak havoc on the brain. I was diagnosed with neuroborelliosis in 2008 and have gone through several years of IV antibiotic treatment, with some success. It’s been a very long road, one that included drastic variations in my mood and concurrent psychotic episodes, all of which have shown improvement with IV treatment. Ironically, I also work in the mental health field as a therapist, so I can also attest to psychiatry’s reluctance to see symptoms from an infectious angle. It’s maddening! Thank you for being brave enough to post about these complicated and needlessly controversial issues. One day, it will be common practice to look for an infection first, and it will be because people like you were willing to share their stories.

    • Kelly,
      Thank you for those supportive words. Nice to know we are not the only family struggling with a system that insists on calling my son’s condition bipolar disorder. I know how hard it must be for you to convince your peers. That has been the story of my life. Glad we have a psychiatrist now who is at least willing to listen. The last one exemplified all the negative stereotypes. “Lymes disease, even if it exists has nothing to do with his bipolar disorder.” You have probably heard that too. When you hear them say “Lymes” you know it is time to go elsewhere.

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