Friday, April 10, 2015

Ghost story

I met this 58 year old male one month ago; I am now seeing him for a follow-up visit.  Seven weeks ago he went to the ER in his local Southern Maryland hospital. He presented with fever, malaise, chills, sweats, headache and achiness. He told the ER staff he heard voices. He states a psychiatrist evaluated him in the hospital and found nothing wrong. He was diagnosed with a virus. Upon discharge he adamantly insisted on a Lyme test which was reluctantly performed. The results were positive and he was started on a 4 week course of doxycycline of which he was in the middle of when we first met. Obtaining a history I asked about the voices. I dug for a little more information. The voices were fairly benign; they would repeat what he said and told him they were not going away. He heard three distinct voices, both male and female. I asked for how long had he heard voices. Although the voices became more boisterous and intrusive with the recent illness, he had in fact heard voices for 10 years. Otherwise, he functioned normally – did well at work, had friends and socialized appropriately and he denied any history of psychiatric disease or treatment. He told me the voices started when he moved into his deceased parent’s 170 year old farm house. He went on to tell me the house was haunted. He wasn’t the only one who experienced it. Things fell off counters, doors slammed, footsteps were heard on the stairs and he told me that something tugged or pulled at him at times. He told me that 8 separate friends had tried to stay over at the house and none could stay the night, terrified by similar ghostly encounters. He went on to tell me that ghost hunters came to the house; set up all kinds of equipment and never came back.  No one else ever heard voices, only he did. About 4 years ago he moved out of the home into a new domicile: the voices followed him. He thought that supernatural spirits followed him from one house to the next.

At our first visit he admitted to some brain fog; he was not as sharp as usual. Perhaps his mood was a little down and he was a bit snappy. He did complain of ongoing fatigue and malaise, low grade fevers and some aches and pains. He did not appear to be terribly ill.

Following the dictum: Lyme plus Bartonella makes you crazy; I ran some tests and I treated him with doxycycline and rifampin. I also prescribed a low dose of the antipsychotic drug Risperdal. 

A week later the results were back. The ELISA was positive and every Western Blot band on the MDL test was highly positive. All of the IgG bands were reactive. He was also positive for antibodies to Bartonella henselae. Interesting. He is a very likeable fellow. He appears to be sincere. His speech patterns are normal and his thinking appears cogent, clear and coherent. He shows no signs of delusional thinking (other than the story above) and no signs of paranoia.  

I saw him today after a month of therapy. He told me he felt 80% better.  “How about the voices?” “Gone, completely gone doc.” The voices had been gone for more than 2 weeks. This was the first time he had been free of voices for 10 years! This gentleman spends most of his time outdoors in a Lyme endemic region. Was this his first encounter with Lyme? No. The positive 31 and 34 bands only appear after some time, at least 6 months to a year. This was clearly not his first exposure to Lyme. Something acute had happened. The Bartonella was both IgM and IgG positive, suggesting a new infection. 

Could he be schizophrenic? 

I don’t think so. Aside from auditory hallucinations he is not psychotic. Schizophrenia doesn’t suddenly come on at age 48. The usual age of onset is around 20. Schizophrenics typically exhibit concrete thinking or loose, disjointed thoughts and expressions (psychosis), are socially isolated (this guy appears to have lots of friends) and I would have expected the condition to further decompensate over-time if left untreated.  Also, I would not have expected the lowest dose of Risperdal to have been so incredibly effective. What dispatched the voices? The antibiotics? The antipsychotic?  Time will tell. For now, the spirits are gone and his mind is peaceful.

Monday, April 6, 2015

Oyxtocin and outside the box supportive therapies

This 40-year-old female has been under my care since the fall of 2014. She has an illness which dates back to 1998 which she contracted when while attending a university in Central Pennsylvania she had a typical Bull’s eye rash, diagnosed acutely and treated early with an appropriate course of antibiotics. She became part of the group of 10 to 20% of people who fail initial, standard IDSA sanctioned therapy. Another case of “post Lyme syndrome” of course - not.  Symptoms had been mild until 2011. She went down the usual road and was first diagnosed fibromyalgia. She was started on Lyrica, which was very helpful for pain management, but progressive weight gain of over 60 pounds due to this drug has made her very unhappy. In general, I have not found this drug to be helpful for my patients. When we met she was highly symptomatic but still able to work full-time, barely. Some prominent symptoms included night sweats with air hunger, severe joint pain, constant flulike symptoms, profound fatigue, poor sleep, easy fatigability, daily headaches, cognitive dysfunction, memory loss, anxiety, irritability, weakness and episodes of tearfulness. Depression has been a prominent issue for her. Chronic diffuse pain, diagnosed as fibromyalgia, has been a big problem for her. Readers, I am sure, are familiar with these symptoms and their attributions to Lyme and coinfections.  A previous treating prescribed aggressive antibiotic therapy, including months of intravenous therapy and a plethora of supplements including herbs and vitamins. She had been treated for with detoxifying regimens without much help. I can say her former treatments had been a hybrid approach of allopathic medicine and CAM (complementary and alternative medicine). This is the term allopathic doctors use for treatments not taught in medical school. Her case has been resistant to a wide array of therapies. She is gradually, slowly getting better with a tailored cocktail of variable antimicrobials.

It is important to address symptoms directly to improve her function and sense of well-being.
I have been treating her with a "modified allopathic" approach which has proved to be very helpful. I say modified allopathic because chosen therapies come from the allopathic armamentarium but are used out of turn. Supportive medication with a focus on symptoms can be invaluable; her case is illustrative of this principle.

First off, she has had tremendous success with oxytocin. Oxytocin is a hormone made by the hypothalamus and cycles through the hypothalamic, pituitary, endocrine cycle. Oxytocin is used by allopathic doctors to stimulate uterine contractions in the obstetrical setting. As of late, oxytocin has been called the “love drug” and been attributed with numerous therapeutic benefits. After one month of taking compounded oxytocin lozenges she noticed a significant change.

A problem for many Lyme patients is that they experience social isolation. They stop answering calls of friends who want to be helpful but do not understand. Patients who manage to work - barely - return home exhausted, unmotivated and unable to anything productive. They may become increasingly distant from erstwhile friends and acquaintances. Oxytocin improved her sense of well-being and a feeling of sociability and gave her the push to go out with friends even though it was tremendously difficult. Returning home, exhausted, she was glad she went out. 

Marinol is an overlooked drug. This THC derivative has been available since the 1980s. It can be a powerful analgesic. Despite its propensity for increasing appetite, my patient has been able to lose weight with the transition from Lyrica to Marinol. It has no addictive properties like opioids which may be less effective. Marinol is a safe and effective drug and may provide an array of therapeutic benifits - for some patients. 


Tuesday, March 31, 2015

Potential for new Lyme therapy: bursting the bubble.

A say the problem with Lyme is “6 old men”. I say this somewhat metaphorically. But a small group of older academic physicians developed a paradigm years ago and has continued to successfully convince the faithful. 

A current patient has been admitted to multiple hospitals. This suffering teenage female suffers with severe neurological signs and symptoms. I had the opportunity to speak with one of her hospital doctors, trained in both infectious diseases and immunology. He asked me why I thought the IDSA guidelines were wrong. He let me speak and he was a good listener as I waxed eloquently (or so I thought). At the end of my well-crafted diatribe he was entirely unconvinced. My patient, a young woman, suffering in the most horrific way has been bandied about from one hospital to the next. It seems each institution is more eager to get rid of her than the last. At the last hospital her mother was told, there are some patients that never get diagnosed. Lyme had well been treated with more than a month of Rocephin. It was something other than Lyme. Why do I think the IDSA is wrong?  The patient’s mother was challenged with same question and she gave her best lay explanation. When Mom read “Cure Unkown” she had an “Ah ha” moment and realized the disease is political and has now learned to save her breath. The IDSA is wrong because of history, politics and a paradigm war. Perhaps there has been a debate about the "science" as is oft said. I think the answer to this question can only really be explained contextually.

It is so brutally unfair that anguished parents fighting for their critically ill daughter are asked to take part in this fight.

This article published in the NYTs is very instructive in this regard. 

Stalking Dr. Steere Over Lyme Disease, By DAVID GRANN Published:   June 17, 2001

Although this piece was written 14 years ago, nothing, or very little has changed. Dr. Steere, a once virtuoso violinist whose career was cut short by a finger injury turned his focus to medicine. By serendipity Lyme fell into his lap and he has been a Moses of the field for the last 40 years. Comtempory medicine has no experience with a multisystem disease such as Lyme disease. The specialization of American medicine makes it more difficult for physicians to see recurring patterns of the disease. Patients instead are diagnosed with psychosomatic disease, fibromyalgia or chronic fatigue syndrome. It is fascinating that Dr. Steere says that chronic Lyme has become a garbage can diagnosis and that fibromyalgia is frequently the real answer.   Dr Steere tells the reporter: “there is no controversy amongst scientist.” The 6 old men and their cohorts live in a bubble, have lunch with each other and validate their beliefs: Lyme is easily treated with short courses of antibiotics. Their influence continues to have far reaching consequences leading to devastation for so many Lyme patients.

Personal attacks, such as in the case of Dr. Steere, have an effect opposite of that desired. The besieged only become defensive, clinging more tenaciously than before to their flawed system of belief.

Science is the best weapon we have. It is finally catching up.

Fourteen years later after this interview, when nothing seems to have changed, a study published a few days ago in PLOS one by Auwaerter, (Feng, Zhang) a stalwart “Steerite” leading the charge in the Lyme war against the Burrasconites, firmly contradicts the basis of the Steere hypothesis. 

In this study the Hopkins’ group admits the cause of ‘Post-Lyme” is uncertain. The idea that Lyme bacteria persist after 2-4 weeks of amoxicillin is “controversial” according to the authors of the study, who then proceed to provide clear, concise and convincing evidence that Borrelia burgdorferi, the Lyme agent,cannot in any world, possibly be killed by this recommended therapy.
The evidence is clear, there is no single drug is capable of eliminating Lyme persisters in mice, dogs, primates and humans -- or in a test tube.  There is no known combination of two drugs that can eliminate Lyme persisters.The authors have discovered a single combination of three drugs: daptomycin + cefoperazone + doxycycline  processing the unique ability to eliminate Lyme persisters in a test tube. This is a huge step forward. 

We may not be able to readily adopt this study for clinical purposes. Daptomycin is an extremely expensive drug and is currently reserved for the sickest hospitalized patients. Infectious disease physician's "stewardship" over antibiotics will likely be a roadblock against the use of this potent drug, and, third party payers, hiding behind the banner of FDA approval will likely not pay for it.  Cefoperazone I have tried to prescribe; pharmacists have told me it is not available.

Only a veritable nuclear bomb of antibiotics could kill all the Lyme in a test tube. Still, Dr. Auewater (at his other job), along with the coterie of Steerites  will continue to tell us the pea shooter therapy is all our patients should ever need. 

The young woman described above, in a wheelchair, delirious half the time, in incredible pain, diaphoretic, with apnea and with constant “pseudoseizures and lapses of consciousness whose blood tests show serological evidence of Lyme, Babesia and Anaplasmosis cannot be helped by science, only by the art of medicine based on years of learning and experience. The Steere camp has no answers but is quick to judge.

The nuclear option, if available, would have to used for care. For example, the patient above has severe Herxheimer reactions with low dose minocycline. Medicine will remain an art as well as a science for the foreseeable future.

New research at the test tube level with drugs such as Claritin and the "nuclear option" may prove to be helpful. Test tube science does not always translate into clinical cures but may certainly provide key, new evidence.

The study gives us another rock to throw at the edifice of the Steere - IDSA - CDC dogma.  It remains a David vs Goliath battle. For now, Lyme remains a political disease. We know the science, which are adversaries claim to hide behind, will prevail in the end.