Voices and stories: One day last week, in my office

The following quotes are not verbatim. I took some poetic license. But they are pretty close.

"I am 16. My body is has numbness and sever shooting pains. It is getting worse. My joints and muscles hurt. I am dizzy. I passed out. The cardiologist did a million test and said I have a low blood pressure. He put me on medicine, an adrenal like hormone to raise my pressure. The neurologist spent 7 minutes with me. 'Sure its Lyme: not'. 'Everyone thinks they have Lyme these days. It must be the latest fad. The media has got people confused and misinformed'. He said I suffered with a psychological problem, anxiety. He was rude and offered nothing. He sent me back to my primary care doctor. My pediatrician had no idea what's wrong. I asked for a Lyme test. No. It's definitely not Lyme disease. Doctor can you help me?"

" I was bit by a tick 2 years ago. I had the classic bulls eye rash. The doctor put me on Doxycyline for three weeks. I still had a fever and flu like symptoms. The rash wasn't gone. He said that's all I can do for you. I saw three or more other doctors; can't really remember. I went to the ER three times. Lyme tests were done. They were always negative. My body is racked with pain. I have overwhelming fatigue. I have headaches and dizziness and no sense of balance. My memory is shot and getting worse. I have had three spinal taps. The first two were normal. The third time they said I had meningitis, but it wasn't due to Lyme. Along the way I received two more three week treatments with Doxycyline. The same line was repeated: 'That's all we can do for you. Sorry'. Someone said it can't be Lyme because you would have been dead by now. The Doxy didn't work at all. I haven't been able to work. Money is tight. We called three Lyme clinics; they wanted $3,000.00 dollars up front to see me and send blood work off to California. I heard you might be able to help me..."'

" He just got out of the hospital; a big fancy University hospital. Docs there couldn't figure it out. He suddenly became weak and passed. He was confused. It has been going on for years. The spinal fluid was sent for Lyme antibodies. It showed some bands: IgM 23, IgG 39 and 41. Not enough to call it Lyme. Nonspecific results. He is an engineer, was brilliant. His memory, concentration and thinking is deteriorating. His body hurts. His joints swell. He has numbness and tingling. The headaches are getting worse. He is getting weaker and drops things. His balance is way off: he falls. He has trouble swallowing. They say its not Lyme. They are trying to figure it out. They think it might be an inherited nervous system disorder or a complication of cancer. They checked for AIDS. It was negative. I asked if they were sure it wasn't Lyme? They copped an attitude and looked at me like I was crazy. OK, they gave in and decided to humor the neurotic wife. They gave him some oral Doxycycline. It seems to have helped a little! My husband is an avid outdoors man: loves to camp and go fly fishing. He has had some tick bites over the years: no rashes that we know of. What do you think. Is there any hope? I am worried that he is dying."

Burrascano: Dosing the drugs

Before the IDSA, a young doctor found himself in the midst of an epidemic. It was 1983, two years after Willie Burdorferi saw this new spirochete undulating under the lens of his microscope. Little was known about this new tick borne zoonosis. At first it was considered a cause of inflammatory arthritis in children. But it was much more. It was a multi-system disorder with wide ranging ramifications. Joe Burrascano tackled this mysterious illness head on. He was a pioneer in the field of chronic Lyme disease, his cause later taken up by ILADS. Joe developed diagnostic clues and guidelines for the diagnosis and treatment of Lyme disease. For 20 years he wrote down these guidelines and made them available to other practitioners. These 40 pages, last updated in 2005, which anyone can print of the Internet, appear unassuming. Yet these simple, unadorned pages contain profound insights and distilled clinical pearls which have become the basis for a new paradigm in medical practice. The definition of Lyme literate is unclear, but a prerequisite is the work of Dr. Burrascano. However, some differences exist between the Burrascano guidelines and the medication doses used by myself and other Lyme docs I am familiar with. The doses of oral medications seem exceptionally high. The doses exceed published recommendations of the maximal tested doses of the medications. Long term and combination therapy is the rule, not the exception. Even recent studies with IV Rocephin show that the benefits wane quickly when the medicine is stopped after three months. Treating chronic Lyme appears more a marathon than a sprint. The duration of therapy may be more important than the dose of antibiotic. There is a clinical sense that Lyme can only be cured at a particular pace. As the organisms are killed, the immune system has to make adjustments which allow the host to recover. Causing severe Herx reactions does not appear to shorten the duration of therapy. And in some cases, severe Herx reactions can have adverse clinical effects. Any dose of antibiotic sufficient to cause a Herx is killing Lyme. Dr. Burrascano recommends doses of Amoxicillin of 3 to 6 grams plus Benemid which increases drug levels by inhibiting urinary excretion. In my experience, doses of 2 to 3 grams per day, without Benemid are effective. He recommends Ceftin 2 grams per day. The maximum recommended dose is 1 gram per day. I am hesitant to exceed this dose. He recommends Zithromax up to 1200 mg per day. I am not comfortable exceeding 600 mg per day. Zithromax has a long half life and accumulates high blood and tissue levels over time. He recommends Biaxin, 2 grams per day. The maximal recommended dose is one gram. I have not exceeded this dose. He recommends Doxycyline doses up to 600 mg per day. The standard dose is 200 mg per day. I generally use 400 mg per day, but am hesitant to exceed this dose. He omits Minocin as an option. This drug is favored by many Lyme docs. It is reported to have better blood brain penetration and reported to have other positive neurological and immunological affects. The maximum recommended dose is 200 mg. Like other Lyme docs, I am comfortable pushing the dose for this drug to 300 mg. The higher doses of oral antibiotics are difficult to tolerate. Probiotics can only be pushed so far. GI intolerance, diarrhea and the risk of C. diff infection must be considered when pushing oral medicines to the higher doses. On the other side of the coin, some of my colleagues use doses of antibiotics which I consider "homeopathic." Doses of Minocin 50 mg per day with Zithromax 250 mg every other day are not effective. I recently saw a chronic Lyme patient who had been under the care of another LLMD for one year without any improvement. This patient had been on low dose antibiotic therapy. After only one month of antibiotics prescribed at the doses discussed above, the patient stated that she was finally improving. The Burrascano regimens for treating: Ehrlychia, Babesia and Bartonella are with lower doses of antibiotics, consonant with approaches agreed upon by most LLMDS (and even many IDSA MDs). None of this is meant to diminish the contributions of Dr. Burrascano. The lower doses I recommend may be based on the uses of combinations from the starting gate and an understanding that treatment is long term. Perhaps it also reflects some fear on my part to push the envelope too far. When higher doses of antibiotics are needed I reach for intravenous therapy which is more effective and better able to traverse the blood brain barrier. Of course I probably wouldn't be having this discussion without the seminal work of Dr. Joseph Burrascano. I have recently read about pulse therapy using very high doses. I have not found pulse dosing to be effective in my patients. but perhaps I need to reconsider this approach. Its a work in progess. Thank you Joe.

Babesia

I don't know if my comments about Bartonella are correct. But I am convinced Babesia is the real thing. Labcorp and Quest will only test for B. microti. Babesia duncati or W.A. is supposed to occur only on the west coast. My east cost patients test positive for this strain at IgeneX. Other strains may be pathogenic. We really don't know. There is no accurate test. Only acute disease is associated with positive blood smears. PCR is a nice idea but it only works if you know which strains you are testing for. The IgeneX FISH test only looks for microti strains as well. I look for malaria like symptoms: sweats, chills, flu like symptoms, fever and malaise which occur in a cyclical, undulating fashion. If severe Lyme patients without any of these symptoms fail to respond to treatment as expected anti-Babesial therapy frequently does the trick. The IDSA claims that the diagnosis requires a positive blood smear or PCR test in a patient with acute typical symptoms. The standard medical wisdom is that Babesia is generally a minor infection which the immune system readily clears in most cases without treatment. They seemed to have missed the boat on this one. I guess that doesn't shock anyone.

Do I have Bartonella?

As we go through life with pick up micro-organisms. An untold volume of viruses and bacteria are added to our bodies like barnacles accumulating on the hull of an aging ship. Hopefully the ship will stay afloat. This is the natural order. We evolved to survive in a soup of microbes. Only a few make us sick. Of course that varies. Opportunistic infections. It has a nice ring. These are dormant germs, biding their time, waiting for the right moment or "opportunity"to strike and make their mark. They can only make a move when the ever vigilant immune system has taken some hard hits and dozed off while on guard duty. Of course Bartonella is the most common tick borne infection. This is no surprise. It comes from the bite of fleas, mosquitoes, flies and a host of other insects. It is impossible to avoid. It is a small gram negative, falcultative, intracellular bacteria with an affinity for red blood cells. This means it has a defined cell wall and is hard to culture. The healthy population is exposed all the time. It only gets you if your immune system is on the fritz. Lyme suppresses the immune system. Is that why Bartonella causes problems? Or does it? Unfortunately, the only thing certain about Lyme medicine is that little is certain. The blood tests are inaccurate. The Fry test is inaccurate. The Fry test finds BLOs, Bartonella like organism which are an entirely different matter. These are feline germs without cell walls more related to Mycoplasmas, not known to be transmitted by vectors (ticks). To add to the confusion, Dr. Burrascano and others call the tick borne Bartonella BLOs as well. What is meant here is that tick transmitted Bartonella behaves differently than other forms of the same species commonly associated with Cat Scratch Fever. Did you follow me? Clear as mud. Bartonella can cause a host of very serious illnesses in patients who are immunsuppressed by HIV, alcoholism, malnutrition, cancer and others. This unique Bartonella, associated with LBC (Lyme Borreliosis Compex) is said to have unique features. It doesn't cause the serious Bartonella associated diseases like endocarditis which are well documented in standard medical texts. It causes: More severe psychiatric symptoms, rashes and nodules, Lyme symptoms which are refractory to therapy and other symptoms listed by well known LLMDs. One problem is that all of the purported Bartonella specific symptoms are also seen with Lyme. Lyme causes serious neuropsychiatric symptoms of all sorts. Lyme is associated with all sorts of mysterious dermatologic manifestations and so on. Essentially what we are talking about then is: 1) a germ that everyone gets 2) symptoms which may be caused by just Lyme and 3) no reliable test to confirm that the organism is present or gone. One LLMD claims that treatment is very difficult. Standard therapies are ineffective. Patients should be treated with high doses of both Zithromax and Biaxin in combination. Another very well known LLMD says it should be treated with Levaquin for one to three months. He reports that Rifampin may be an alternative therapy. He claims that since Levaquin doesn't kill Lyme improvement must be attributed to the killing of Bartonella. One little problem. Where are the facts? These are anecdotal reports; there is no science to support them. Both treatment DO KILL LYME. Sorry. Look at the original studies on minimal inhibitory concentration of drugs effective against Lyme. Although Cipro is a more effective quinolone for killing Lyme, its cousin Levaquin also dispatches the little buggers.
Bartonella: We all got it and keep getting it. It is opportunistic. Does Lyme cripple the immune system enough to let it ravage our bodies? If so, why doesn't it cause any of the well known syndromes associated with the organism. Listen Lymeland: Gary Wormser and Allen Steere are gunning for us. Why are we loading their guns with ammo? We know that Lyme is hard to kill and that different antibiotics seem to work better for different patients. The notion of individual patient responses to medicines is accepted in all facets of medicine. If blood pressure medicine A doesn't work perhaps med B will. We can conjecture, theorize and pontificate regarding our beliefs that Bartonella may do this or that. But we need to be clear that we are just throwing out theories. When we start writing down symptom lists and medication lists, without the backing of science we are acting like, gee, the ID... As a favorite med school professor said: " Call 'em like you see 'em."

Cure Unknown

I am dragging my butt around today because I started reading Weintraub's book with above title last night. I couldn't put it down and finished reading at 2 AM. Great read! She spent 6 years on the book and provides invaluable insights as to how we got to where we are now. It reads like a novel: the politics, the personalities, the egos, the intellectual fraud, the vitriol, the personalization and degradation of what should have been dispassionate discussions amongst caring professionals into an all out street brawl with all the trimmings, the distortions, the lies, the backstabbing, the selective use of science to accommodate forgone conclusions, the "high tech lynching" of professionals by others with more "power" and testosterone; its all there in plain view. The patients who are left out in the cold are also clearly depicted. She talks about "Lymeland," a secret place where "Lymies" and their docs go, underground and in the shadows.
She said she had trouble ending the book. I hope that is because the final chapter has not yet been written. She talks about the 3 NIH studies relating to chronic Lyme. She exposes the deceit and treachery of those involved. The IDSA holds fast: there is no chronic Lyme. The Klempner study (which is open to much criticism) showed no benefits with prolonged antibiotics. But wait a minute. The Krupp study showed marked improvement in the target symptom, fatigue. The Fallon study for neuroborreliosis showed dramatic improvement which was transient and returned when intensive antibiotics were resumed. I must of failed math. Two of three high level studies demonstrated that chronic Lyme responds to long term antibiotics. The IDSA only looked at one study and ignores the other two. They must be better at math than me ( I went to a State University, not an Ivy League one) . She presents a wealth of data from animal models, but this doesn't count either. Maybe only in horseshoes and hand grenades? My only curiosity about the book is why she decided to completely omit the whole L-form issue. She certainly mentions more controversial issues including Mycoplasma fermentans.
Double kudos to Pamela Weintraub!

Some people are really sick!

Sometimes I don't know what to do. A patient in his late 50s is dying before my eyes. He has had Lyme for 5 years (that we know of). He is barely functioning. His MRI shows extensive brain damage which the radiology says is compatible with Lyme disease. All 13 standard WB Lyme bands are positive. His C6 peptide index is off the charts. He watched his mother die from Alzheimer's disease and knows he is suffering the same fate. He has seen numerous doctors in the past. He has taken courses of Rocephin to no avail. I have tried everything I know and then some. He can't afford a second opinion with a world renown Lyme doc. I am it. Finally I tried a very aggressive approach using 3 intraveous drugs: Rocephin, Zithromax and Flagyl. For the first time he was showing some progress. For the first time he told me he was cautiously optimistic. His energy level was improving and his pain was improving. His cognitive issues were even perhaps a little better. The insurance company cut him off after two months. This treatment is not approved for Lyme disease they told him. He rapidly relapsed and quickly returned to his prior state. He needs a lot more treatment. He can't afford it. He is trying to keep his business (which is failing) and his family going. Every day it takes heroic courage for him to get out of bed, put his shoes on and with unbowed, indomitable determination, push through yet another day. He is dying. We, yes all of us, have given him a death sentence. We have stood by and allowed arrogance, greed, ignorance, pseudo-science, politics and professional bellicosity rule the day. I think about him often. I worry and I fret. There is nothing I can do. Perhaps readers of this blog can help me make a difference. Perhaps nothing ultimately can make a difference for this patient. Perhaps it is already too late. But I am a fighter. I learned it from my Dad- a great physician-who remains my greatest mentor, may he rest in peace. This suffering soul should at least be given a chance. Medicine is about caring; but is also about fighting and hope: fighting for our patients and keeping the embers of hope alive; and never giving up until the fat lady sings. Thanks Dad!

Lyme: A patient I saw today

There she sat before me: fearful and worried. She knew the remicaide prescribed by her rheumatologist wasn't working. She had been chronically ill for more than 10 years. She had seen many doctors. She was besieged by pain which racked her entire being. She had lost weight. Her muscles had atrophied. Now, her brain was clearly failing. She had to take notes of everything that transpired during the visit, because her memory was shot. Her list of symptoms could take up pages if I were to list them all. I had told her I suspected Lyme for several years. She was skeptical. All the usual lab tests were negative or equivocal. Finally, I convinced her to cough up the $200.00 for an IgeneX Lyme WB test. It lit up like a Christmas tree. She had 10/14 IgM bands and met CDC criteria as well. She had recently viewed Under Our Skin and was becoming a believer. At this point it was hard for her to remember most of the film. She is 37 years old. By chance, another Lyme patient was in the office. I asked them both if she could could share her story; she jumped at the opportunity. This 46 year old patient was doing great! I forgot how sick she had been. She had suffered with partial paralysis, severe fibromyalgia, severe cognitive dysfunction, many other symptoms and had been essentially disabled. She had been tossed about by many doctors over many years without finding answers or help. By chance, one of my patients whom she knew casually and seldom saw gave her my name. Today, after one year of treatment she was bright, energetic and sharp as a tack. This was the best she had felt in over ten years. Her only fear was that this all wasn't real or permanent, that she might wake up from a dream to find herself back in the Hell that had been her former life for so many years. The boyfriend who had left her because he thought she was a hypochondriac was back in her life and appropriately remorseful. As she shared her story with the frail and terrified woman who sat before us, I noticed a glimmer of hope light brighten those eyes which had been dim for too long. I know she will be tough. There are many factors which make her case particularly difficult. A and long and bumpy road awaits us. Today we started.

To treat or not to treat that is the ?

A 46 year old male looks well, the picture of health. His wife has Lyme disease. His IgeneX WB for Lyme shows a 41 band and an indeterminate 31 band. He feels tired. He feels somewhat forgetful. He forgets names, numbers and generally has difficulty with word retrieval. It has progressive over several years. Perhaps he has other vague cognitive symptoms. He functions well at work as an engineer, but has to "push himself harder" to do well there. He has no pain. He has no neurological symptoms other than than the "subjective" cognitive complaints. A brain MRI is normal. A spect scan has not been performed, but I suspect it will negative as well. Of further interest, he has taken a course of antibiotics for several months in the past and felt he was improving. His symptoms seemed to worsen off treatment. It is clear to me that other doctors would say his symptoms are compatible with aging, depression or something else. I don't even know if most LLDS would treat him. My gut tells me spriochetes are busy multiplying in his brain. I feel compelled to treat. I don't know if its the right thing to do. This is where the "art" of medicine supersedes the "science." Comments welcome.

Parkinsons revisited

I have a group of patients who have developed Parkinsons disease after infection with Lyme. They have not improved with intensive anti-Lyme therapy. They have had only moderate responses to typical drugs used for Parkinsons disease. I recently saw one such patient and I remembered that Amantadine, an antiviral drug used for influenza was considered a mildly effective adjunct in the treatment of Parkinsons. I considered the fact that HHV6, the most neurotropic virus known, which infects virtually everyone, has been treated with Amantadine which inhibits viral replication, with some success.. I started this patient on Amantadine. The other drugs prescribed by both his neurlogist and me prior to Amantadine had been disappointing in their effectiveness. I was surprised to see this patient smiling in my office the other day, after a month of Amantadine. (Parkinsons causes a mask like loss of facial expression as one of its typical features.) He reported that his tremors and gait had improved. It was the first time his Parkinsons had improved after more than a year of Lyme and Parkinsons therapy. Literature also indicates that HHV6 has a causal role in MS. This may be an exciting development. So far its only one patient.

North Carolina: Shame on You

Today I saw a patient who came all the way from North Carolina. She has sero-positive neuroborreliosis with all the classic symptoms, an abnormal mental status and neurological exam and an abnormal brain MRI showing extensive white matter disease. The doctors in her home state agree that she needs IV antibiotics, but know one will prescribe them. After what happened to Dr. Jemsek there, doctors are afraid to treat this disease appropriately.
To make matters worse she made an appointment with a "Lyme specialist" at John Hopkins University here in MD. While waiting months for the appointment she read an article describing this physician's approach to Lyme disease. She was in tears. It was clear that the physician did not treat chronic Lyme disease and that he was an orthodox IDSA guy. She spoke with him on the phone. He said based on a review of her case that he would not be able to treat her. But he suggested she see an ILADS doctor "because they do a good job." Apparently he couldn't treat her by anything other than IDSA guidelines, which he apparently knew were wrong: A bad career move at the John. The patient is a credible source. She is an optometrist. She had a good attitude. She kept telling me the truth will eventually come out. I hope she is right.

Lyme and Science

American or Western trained physicians follow something called "Evidence Based Medicine." This means that a treatment is only used if there is science to back it up. The medical community has decided that there are different levels of "evidence." The best evidence comes from rigorous studies at major teaching/research facilities with the results confirmed by further studies at a second such institution. The studies are meticulously controlled through a process called a randomized double blind placebo based method. The results are carefully reviewed by a detailed statistical mathematical process. If the results demonstrate that there is "statistical significance" that treatment A works for disease B, then it is claimed that the treatment is "Evidence Based." The results are "Peer Reviewed" by experts in the particular area under study and published in a major, prestigious journal. Voila: Science has shown that the particular hypothesis which was tested is true. Physicians should use the results in clinical practice in order to follow the "Standard of Care." This was a legal concept which doctors have readily adopted for some unknown reason.

When there is no such research based evidence, a panel of "Experts" may be convened to offer opinions and recommendations. This sort of information acts as a surrogate for information obtained through a scientific process and is frequently referred to as evidence based as well. The evidence is based on opinions and conjecture of experts, who are held in high esteem in the community of physicians at large. These opinions and recommendations also become woven into the standard of care fabric.

The above process is open to criticism. Most medical research is funded by monied interests such as big Pharma. Typically only new drugs or therapies which are patentable and potential "blockbusters" get studied. Frequently the efficacy of the new therapy can only be proven by statistical analysis. This means the benefit may be small. Medical research is difficult because it involves many variables which are hard to control: does the cohort studied really have the same disease, are there genetic differences, do they follow different diets, do they exercises the same amount? and so on. Of course all of these differences are supposed to come out in the wash when the group is studied so that individual differences balance out. Then what does this mean for an individual patient who is not an "average" of the group, but has unique characteristics?

How can opinions substitute for science and be called "evidence based?"

Most questions which clinicians would like answers to are never studied out all. Diseases may be complex and nuanced. The same can be said for treatments. These things are not amenable to the scientific process as described above.

It turns out that patients instinctively distrust this process.

Studies showed that consumers (patients) were spending more money on so called alternative medicine they they were on science based Western medicine, called allopathic medicine.

Patients were taking herbs, consulting with herbalists and homeopaths, taking vitamins and supplements by the handful, going for body therapies of all sorts, going to chiropractors, massage therapists, acupuncturists and seeking out many other alternative and complementary therapies.
Physicians and institutions became cynically aware of the lost revenues. The bastions of scientific medicine like Harvard opened alternative and complementary medicine clinics. Of course they thought it was a bunch of nonsense, they just wanted to capitalize on the potential profits.

If a doctor prescribes herbs and mind-body medicine he is considered a crackpot and left alone.
When doctors start prescribing real medicines, like antibiotics for a supposedly fictitious disease that was another matter.

Most Lyme doctors come from an alternative medical background. That is why many heavily promote herbs, electromedicine and other "off beat" therapies. I approach Lyme from an allopathic perspective. I believe this is more threatening to the status quo. There are limited studies which show that long term antibiotics are beneficial for chronic Lyme. There are no studies showing that prolonged therapy for clinically diagnosed Babesia and other co-infections works. There are certainly no studies which support the use of vitamins and supplements as recommended by many LLMDs. Many therapies commonly used in the "Lyme community" come from word of mouth and anectdotal reports. Lyme clinicians over time, develop an experiential sense of what works. Medicine used to be considered an art and a science. Those physicians who with to rely solely on the science have unfortunately thrown out the baby with the bath water.

IDSA recommendations are opinion, not fact. They have been discredited.
Texts which mainstream physicians follow not only ignore this fact, but they fail to discus the legitamate controversy which has been swirling around the Lyme issue for years.

Hundred of articles and studies related to Lyme disease have been published. The IDSA and mainstream medicine have cherry picked those articles which support their pre-existing conclusions.

Science is a word which in this case without meaning. It is used to cloak an agenda of mysterious origins and purpose. The cynics and disbelievers should at least consider the profit motive. I have a dream that a major teaching institution will open a Lyme treatment center. LLMDs, neurologists, infectious disease experts, immunologists, psychologists, psychiatrists, radiolologists and others will cooperate to treat and research this terrible disease.
You can stop a guy from dreaming can you?