Search This Blog

Friday, July 27, 2012

Super bugs and immune responses

A thirty seven year old female presented for an evaluation at the end of 2010. She had previously been in good health until 18 months before the visit. She had been diagnosed with chronic fatigue syndrome and fibromyalgia by several other doctors. She had been informed that blood tests, including a Lyme test, had all been normal. She had recently moved back to Maryland from North Carolina. She had previous lived in Maryland 2007 to the beginning of 2009.

Her symptoms had included: fatigue, swollen glands, joint pain and swelling, headaches, nausea, vertigo, blurred vision, dizziness, loss of balance, facial twitches, tremor, memory loss, decreased appetite, muscle cramps, abdominal pain, flulike symptoms, night sweats, shortness of breath, numbness and tingling, disorientation, confusion, poor cognitive processing, random lactation, hot flashes and chills.

She is not an outdoor person although she has had many cats. She does recall walking barefoot through tall grasses on several occasions. There is no history of tick bite. There is no history of an EM (bulls eye) rash.

After 6 months of treatment, including 5 months of Rocephin she is feeling reasonably well. She is still weak but has good endurance. The fatigue is all but gone.  Cognitive problems have largely resolved. Muscles pains are gone. Overall, she is about 80% better.

Response to antibiotics is extremely variable amongst patients. Currently the combination of Tindamax and Levaquin have been very effective. The addition of Cortef seems to have been very helpful.
I would like to suggest that I(we) frequently do not know what we are really treating. We do not have a microsopic view of  tissues, the immunological responses, microbiological responses or cellular functions.

For example. From many quarters it would be assumed that I am treating Lyme, Bartonella and adrenal fatigue. Perhaps this is mostly wrong.

Regarding Lyme, we have no data regarding microbial resistance. A patient yesterday asked me if Lyme is a "super bug." Actually a good question. We know Lyme has a complex genome and we know Lyme should have the ability to develop drug resistance. Super bugs like MRSA and VRE have evolved the ability to resist multiple antibiotics. Efflux pumps within the bacteria pump out antibiotics of differing classes rendering these antibiotics to be ineffective.

Perhaps Levaquin works, and/or Tindamax, because the offending germs have not developed resistance to these antibiotics.

And Cortef. Treating adrenal fatigue? Maybe not. Patients with treatment refractory Lyme may have very high levels of cytokines such as IL6 and TNF alpha. These are potent mediators of inflammation. It is well know that one of the ways Lyme makes people so ill is because it causes  excessive inflammatory reactions. Steroids are the best way to tamp down these excessive immunological responses.

I really started writing this blog because of the patients measurable immune responses to the germ. Currently, the standard WB shows no reactivity but the C6 peptide, 1.55, is positive for the first time.  The WB sent to Stony Brook showed only 41 IgM and IgG bands.  One year ago, a Labcorp WB was positive for IgG bands (4/10) 66,58,41 and 28 and IgM band 23.  Six months prior to that, Labcorp found IgG bands (3/10) 66,58 and 41 and a positive IgM (2/3) 39 and 41.  Previous C6 peptides had been 0.4 and 0.7.

It shows that either the tests are completely unreliable or that immune responses are extemely variable over time. Maybe some of both.

Sunday, July 8, 2012

Toxoplasmosis and Lyme

The Archives of General Psychiatry has published two studies from Denmark demonstrating the relationship between toxoplasmosis and suicide. Especially violent suicide. Toxoplasma parasities hide within neurons and glial (supporting brain cells) in cystic forms.

Toxoplasma are persistent brain parasites. The immune system is unable to eradicate them. No effective antimicrobial therapy is available. As with Lyme infection, the organisms manipulate the immune system and are associated with alterations in cytokine levels including interleukin 6. Toxoplasma infection and Lyme also impacts metabolic pathways which lead to the production of kynurenic acid and quinolinic acid from tryptophan.

Elevated quinolinic acid levels has been associated with neuroborreliosis in at least one frequently cited study. These neuro-active substances are associated with glutamic acid excito-toxicity.

Toxoplasma infection has been long associated with depression, schizophrenia, autism, congenital disorders and many other brain disorders.

Toxoplasma infection is common, infecting up to 1/3 of the world's population.

As the microbiome projects has shown. Microorganisms inhabit communities within special niches. Many bacteria commonly found in places as prosaic as the skin remain unknowns. It is clear our bodies are loaded with unknown "mystery bugs."

Perhaps the brain also frequently hosts communities of microbes: Toxoplasmosis, Lyme, other spirochetes. Of course, only those in the Lyme community think of Lyme, Babesia, Bartonella and other co-infections as frequent denizens of the human brain.

An unknown, perhaps endogenous, protozoan has been observed within human cells and the nervous system (unpublished) with genetic/morphological features borrowed from both Malaria and Toxoplasma. (We may all be born infected with this unknown parasite). This is all I can say regarding this topic at the present time). 

One investigator has suggested such organisms could even be symbiotic? mutalistic at times. This is certainly the case with many other microbial communities, natural flora. At times usually beneficial organisms, under the right opportunistic conditions can become troublesome.

Most Toxoplasma infected individuals have no symptoms or apparent ill effects. The same is likely true for most individuals harboring brain infection with many of the other microbes listed here.

Why or when infected individuals is unpredictable. Experience has shown that other infection, trauma or stress can provoke illness with Lyme. It does seem clear that mixes of co-infection increase the severity of Lyme syndromes including neuroborreliosis. One could postulate that at times Toxoplasmosis acts a co-infection.

Many patients with extensive, systemic Lyme seem to have immune dysfunction. Many have subtle decreases in varying IgG subclasses. This may turn out to be a key factor.

From a treatment perspective, anti-Babesia drugs are used for chronic forms of the disease. It should be noted that many anti-psychotic medications also have anti-parasitic properties.

The authors note that two other studies have shown the association of toxplasmosis with suicide, one in Maryland, my home state. Great.

Saturday, July 7, 2012

Fatigue in a complicated patient

After a long struggle, the patient is doing fairly well. The cognitive improvements have been superb. But the fatigue and lack of endurance have recently been unbearable. The fatigue has improved and worsened in fits and starts. Recently, she has pushed herself just a little too much;  rebound fatigue with no endurance became unbearable. No reserves.

Long term intravenous antibiotics, 7 months and counting, have worked great. For three months, IV Flagyl as mono-therapy has been effective.

Despite normal lab studies, I clinically diagnosed adrenal fatigue. I treated her with Cortef and Florinef with a very positive result. Fatigue and energy much improved.

She has a history of very clear cardiac Lyme and has a permanent pacemaker. Her cardiologist has been carefully adjusting the pacemaker, recently increasing the top heart rate. The increased heart rate allowed with exercise seems to have helped as well.

POTS cannot be easily diagnosed. Her heart rate, recent exam, decreased with standing rather than vice-versa expected with POTS.

Surprising, at our last visit she reported relief in other symptoms. Her face was oily for the first time in more than a year (under autonomic/sympathetic control). A sensation of incomplete bladder emptying resolved (under autonomic/parasympathetic control) control. The sensation of hot/cold temperature dysregulation improved. These are POTS symptoms, not generally considered  adrenal fatigue symptoms.

I prescribed Florinef, a mineralcorticoid analogue of aldosterone made by the adrenals for the treatment of Adrenal fatigue. This hormone is widely prescribed for POTS because it increases salt and water retention helping with postural dizziness. A strictly symptomatic therapy. In this case it was prescribed for adrenal fatigue, not POTS.

Adrenal fatigue patients describe salt cravings. Perhaps this is due to adrenal/aldosterone dysfunction.

My treatment of adrenal dysfunction seemed to improve dysautonomia. An unexpected outcome.

She also started taking Ritalin again which has been very helpful for fatigue. Many clinicians prescribe Provigil/Nuvigil for fatigue. Ritalin usually works the same but is much more affordable.

Stimulants like Ritalin/Adderall, augment the effects of dopamine and norepinephrine. Adrenal insufficiency is associated with decreased norepinephrine excretion - stress hormones.

Taking Ritalin hopefully does not make adrenal fatigue worse. Like cortisol, it may take pressure off a mis-firing adrenal system. Anyway, it helps.

Improvements of symptoms and function hopefully help the overall healing process.

Too much stimulant may have a negative effect causing dependence -  decreased endogenous neuro-transmitter function.

It is all complicated and outside the box, but working for this heretofore desperate and hopeless patient.

Wednesday, June 27, 2012

Adrenal fatigue

Stress - anxiety - palpable across the room, emanates from her  pores. Everything is going wrong at the same time. Unfortunately, this is not new. There has been no  response to everything I've thrown at her. The tell-tale Babesia symptoms:  night sweats, flu-like feelings, air hunger, have not budged

I prescribe a dose of Cortef/cortisol.

Adrenal fatigue is not a real diagnosis according to the Mayo Clinic. Look for real diagnoses like fibromyalgia or depression the web page suggests. No science.

There are decades of published, peer-reviewed research showing alterations in adrenal function in depression, chronic fatigue syndrome, fibromyalgia and other related conditions. The results are abnormal, but confusing and difficult to make sense of.

Adrenal function is regulated by a system of feedback loops. One structure in the brain, the hypothalmus, sends a message to another part of the brain, the pituitary, which in turn sends a message to the adrenal glands. The system is called the Hypothalmic-Pituitary-Adrenal axis. Abbreviated HPA axis. The brain is able to sense whether enough adrenal hormones are made and take corrective actions.

The same system works for thyroid and reproductive hormones.

Over-worked adrenals, secreting  "stress" hormones such as cortisol and adrenaline, are unable to keep up with the demands placed on them. The whole HPA system becomes sick in variable ways.

Adrenal fatigue is associated with chronic debilitating illness like chronic Lyme disease.

The adrenal gland is complex in anatomy and function, releasing a wide array of hormones which I will not address here.

Organized medicine likes blacks and whites. There is no gluten sensitivity, only Celiac disease or not. Likewise, only extreme adrenal disorders, Cushings and Addison's disease are accepted. Black and white. No shades of gray.

The adrenal fatigue syndrome is associated with a plethora of symptoms :  Total  exhaustion. Lack of endurance. Anxiety, panic attacks and depression. Dizziness. Dizziness with standing. Aches and pains. Brain fog. Inability to cope with trivial stress. Fatigue more prominent in morning - or -evening. Second wind at night. Insomnia.  Salt and/or sugar cravings. Weight gain. And numerous others.

Testing of saliva, urine and blood may give confusing results.

Cortisol levels peak level at around 8 am. There is a slight spike at 4 am. Otherwise, levels  decline and stay low throughout the day and into the night.

For this reason cortisol should usually be given in the morning.

I have found measuring DHEA, another adrenal hormone, which can be supplemented,  to be helpful.

For the most part, the diagnosis is clinical.

The immune system works better with small doses of cortisol called "physiologic", even though it is a "steroid." High doses of steroids suppress the immune system and must be avoided.

A little cortisol hopefully takes pressure off the overworked, dysfunctional, HPA, system. Hopefully the hormone can be gradually withdrawn as the disease abates. Tapering must be done slowly as the sleepy adrenals wake up.

The above patient needs to reduce stress, get more rest and eat a nutritious diet. She is a tough case.

Monday, June 11, 2012


A generally very happy thirty-four year old female came in for a followup. She feels tired but attributes this to allergy medicines. In fact, Astepro causes drowsiness. She presented for ongoing care for migraine headaches. The headaches seem to originate in her neck and radiate up into her head. These are classic migraines: unilateral,  pounding in nature, associated with nausea and classical visual changes. Migraines run in the family and she has had a longstanding history of migraines. But the headaches have been difficult to control.

By far, the best migraine prevention medicine is Topomax. However, its nick name is "dopomax", because it is frequently associated with brain fog.

She has been off antibiotics for a year and insists her Lyme is "cured."

She presented in 2008 with an illness that went back 12 years.

Previous symptoms have included: memory loss, disorientation, anxiety, depression, nightmares, joint pain, numbness and tingling, night sweats, flu-like symptoms, dyslexia -  problems with writing and reading, brain fog, getting words mixed up and others.

She was previously treated with an aggressive program which included several months of intravenous antibiotics.

When pressed a bit further she admits to some mild muscle and joint pain but all other major symptoms have been  banished.

I would have to agree with her that her Lyme disease is largely in remission.

But headaches frequently persist after Lyme treatment, at times disabling.

Ironically, this patient works in medical research and studies Botox which can be used to treat migraines. (She has given me permission to publish her story).

Some patients are  treated "forever" -  with the thought the headaches are due to Babesia or perhaps another infection. I have found this akin beating a dead horse.

Standard treatments for migraine are usually effective. A new FDA approved treatment which frequently works is Botox which she is reticent to try.

Monday, June 4, 2012

Trouble with ticks

Bumper crop of ticks this year. Our dog came down  with a lame paw and was diagnosed with Lyme disease. Family members have unfortunately had tick bites. (I know).We live in a zero-lot-line community with minimal grass, no deer - but - lots of rabbits. Our dog is always trying to dislocate my shoulders eager to pursue these critters.
The term "deer tick" is misleading. Deer, like us humans are incidental hosts. The animals feed, neck bent, in tick infested brush. Deer heads and necks covered with Ixodes is a testament to just  how dense the population of ticks is. not that deer are a necessary part of the equation. Any warm blooded animal (even us  humans) can severe as the tertiary host for adult female maturation.  In my case, rabbits are generally the final host.

The problem is the primary host: the white footed mouse. Newly hatched larvae take feed on mice having  Borrelia swarming through their bodies (and co-infecting organisms)  then morph into nymph forms which are the primary culprit for human transmission.

The 6 legged larvae become the  8 legged nymphs, well equipped for the job at hand. They can move very quickly and then lie still, perched for action, sniffing out the carbon dioxide and body heat of their next unwitting meal.

When we pull off an adult tick we don't  really know how many others smaller forms may have attacked us unseen. The issue of how long the tick needs to be in place in order to transmit Lyme disease may be a moot point since most tick bites are never seen.

Some have suggested that most of the ticks are not infected and that we need not worry so much. Informal data from Clongen labs indicates the infection rates may range from 30-70 percent depending on the time of year in our area.

Any effective prevention programs must focus on  effective ways to kill the ticks and perhaps the mice if possible. Thinning out deer populations, as some have suggested, will be of no help.

As for my bunnies, their population does thin out - spring to fall - meals for predators like our fox. Unfornuately, the fox become the next host for the stubborn ticks.

Friday, April 27, 2012


Ultimately, any blog about Lyme disease must cover the entity know as POTS. This stands for postural orthostatic tachycardia syndrome. My patients first  educated me about this. Admittedly, when patients first came saying  POTS,  I thought of Potts, bone infection with tuberculosis.

When a person goes from a lying to a standing position gravity causes 25% or more of the body's blood volume to move into the lower half of the body. Receptors in blood vessels immediately send a message to the brain to correct the problem. The heart rate increases, the vessels constrict, the heart beats with more force and the blood supply is properly redistributed. The part of nervous system responsible for making thes corrections is called the autonomic nervous system. I always remember autonomic because it sound like automatic.

The autonomic nervous system has a variety of other functions. It controls things such as body temperature regulation, sweating, urinary and gastrointestinal functions and others. The generalized dysfunction of the autonomic nervous system is frequently called dysautonomia. Symptoms may include: palpitations, extreme fatigue, exercise intolerance, dizziness, fainting, shortness of breath, memory problems, difficulty concentrating, feeling hot and cold, bowel/bladder problems and intolerance of heat.

There are different forms of POTS. One type is primary and the other types are secondary. Secondary POTS is triggered by a variety of factor, Lyme is of interest here.

Occasionally POTS is due to an endocrine problem instead of dysautonomia. Here are other symptoms are reported to include: anxiety, shakiness, headaches (migraines), cold sweaty limbs and hypertension.

The overlap of Lyme and POTS symptoms is quite dramatic.

I saw a very ill young woman today: Weak  and wobbly, barely able to stand or walk. Supine her heart rate was 80. With standing  her heart rate increased to 120 -  the hallmark of the disorder.  I am comfortable making the diagnosis with this simple test in the right clinical setting.  Some doctors will only make the diagnosis with a Tilt Table test.

A variety of medications may be helpful, including: Florinef, Midrine, Ritalin, Pyridostigmine, antidepressants, clonidine and beta-blockers.

Patients should avoid heat, alcohol, dehydration, other triggers and certain medications. Reconditioning through exercise, physical therapy with emphasis on leg strengthening is an integral part of treatment.

Of course the trigger, in this case Lyme, must be treated at the same time.

The Lyme/ POTS patients are sicker and more challenging to fix. But most POTS patient improve with Lyme therapy and physical therapy.


Yesterday was bring your child to work day. So my 17 year old sat in on a visit. The patient recapitulated her story. She contracted Lyme 15 years ago, and over the past two years things had really gone down hill. A one-time physically active/fit brilliant CEO became disabled with  profound fatigue, cognitive dysfunction and other constitutional symptoms. At this point I had treated her for over one year. I heard things I had never heard before.

Let me first say this is a happy patient. Six months of oral therapy prescribed by me, superimposed on previous, intermittent oral therapy prescribed by others had been largely unhelpful.

Intravenous therapy -  now into the forth month has made a magical difference. Cognitively she is almost back to normal, weakness and endurance are improving weekly.

Not wanting to share an  exact recipe, because I have found some patients have taken it as gospel, I limit my comments here. I will say very aggressive, somewhat outside the box antibiotic "cocktails" are frequently required. And in difficult cases I have found a combination of three drugs works best.

A common problem is that most Lyme patients look a lot better than they feel. This patient naturally has a sunny disposition and has never suffered with depression.

I really cannot imagine how horrible it feels to have tertiary neuroborrelios. (I also can't imagine what's like to have never felt  depressed).

But she told my daughter she had set a date.

If she was not better by a certain date she planned to commit suicide.

I never knew such as a date existed and I glad I didn't.

How many Lyme sufferers have contemplated suicide?  I hear the number is great. Recently a patient told me if he couldn't afford the needed care he would just let the disease progress and die.

I don't know what the message here is. That is for the reader to decide. Just comments from the trench.

Thursday, April 26, 2012


I see a lot of new patients. I am frequently asked the same question by perplexed souls who have heard contradictory information from disparate sources. "Can Lyme be cured?"

Just not the question I want to hear at our first meeting. I sigh -  then frequently launch into a long winded diatribe. When I stop, hoarse and breathless,  the would-be patient is frequently none-the-wiser.

Lyme bacteria-parasites are uninvited quests who take up residence in our bodies/hosts.  Having limited metabolic capabilities they live off the land. From an evolutionary point of view they certainly don't want the host/new home to perish.  But they don't care if they make us sick. In fact, sick is better. A crippled immune system helps them flourish.

These long, thin, undulating bacteria slither through our skin and quickly disseminate throughout our bodies thwarting the best efforts of our elegant immune system. It  seems no matter what our immune system throws at them they are always in the ready with ingenious counter-measures, seemingly always one step ahead.

The details of all this are elaborated elsewhere. Briefly: Lyme bacteria  make the most of the tick environment, alter host immunological mediators (cytokines) to their advantage, camouflage themselves, continually manipulate developed targets of the host immune system,  sequester themselves in protected niches such as "immuno-prievledged areas like the brain, hide in deep tissues poorly supplied by blood as they do not require oxygen,  survive in biofilm communities, or simply role themselves up into a ball.

Studies in both animals and humans have proved the stubbornness of these micro-organisms repeatedly.

If cure means the eradication of all the Lyme bacteria the answer is no.

If cure means feeling normal again the answer is yes.

Getting there is the trick and  usually not so easy.

Does that help?

Sunday, April 8, 2012

Bait and Switch

Lyme advocacy groups along with "their" doctors have been called anitiscience in a recent Lancet editorial. According to the piece the group is part of a greater conspiratorial movement promoting an agenda, allied with groups who deny that AIDS is caused by a virus or that vaccines are effective.

The agenda of the group, including physicians and scientists from many disciplines, is to stridently advocate for a group of frequently desperate sufferers ignored and marginalized by a failed system hiding behind a banner of science.

Science is a systemic enterprise that seeks to uncover truths and predictions about the universe which can be tested in some reproducible manner.

Science and advocacy groups are both after truths.

Science is not static, it is always a work in progress.

Now, I have just completed reading a book called: " Borrelia, Molecular Biology, Host Interactions and Pathogenesis."

The otherwise excellent text, comprehensive according to the authors, is dogged with non-science politics.

In the preface: "The field of Lyme disease research has been under assault from self proclaimed 'Lyme literati' that have used misinterpretations, misrepresentations, and bold fabrications to promote their ill-conceived and self-serving agenda... This book is intended to dispel accusations that scientists have conspired with their clinical colleagues to conceal from public view the 'real truths' about Lyme disease and its aetiological agent."

The book has chapters on genetics, metabolism and physiology, structure and function, evolutionary biology, ecology, tick interactions on other clinical issues, but none on the ill-conceived notions of "literati."

In point of fact, much of the information supports many of the conspiratorial underpinnings of literati party line. Much of the text helps elucidate intricacies of the microbe's unique ability to evade the immune system.

The first chapter recapitulates the seminal work of Steere which helped uncover the underlying cause of a mysterious epidemic of arthritis. The text states that, "The enlarging investigation revealed that approximately on-quarter of the patients had developed an erythematous cutaneous lesion that in some cases appeared to expand into reddish, often annular, concentric rings.

In contemporary times the literati and the their compatriots who have felt that EM rashes occurred in less than 50% of cases have been emphatically chided by the IDSA types who have claimed EM is nearly always present.

The claim that Lyme advocates don't believe in vacccines has an antecedent. In the introductory chapter it is said the LYMErix vaccine was pulled because of poor market penetration and not because of issues related to effectiveness or safety. Apparently advocacy groups had a meeting with the FDA raising concerns about the vaccine. The groups are accused of mucking up the waters in the face of scientific facts. In the chapter "Lyme disease vaccines," different circumstances are observed. The auther here notes that the class action law suit may have been meritorious and that some evidence supported the claim the vaccine could lead to antibiotic-refractory arthritis especially in certain genetic groups.

According to the text: Bb is suited for extended or indefinite survival in mammalian hosts. The illness is associated with very low levels of bacteremia with primary tissue localization of the bacteria. Bb has a prediliction for certain organs/tissues. A hallmark of infection is the induction of a powerful imflamatory response despite a paucity organisms. The bacteria adhere to extraceullar matrix proteins. The bacteria has a specialized diderm membrane and a powerful flagellin which helps propel it deep into tissues, along and through endothelial cells. The bacteria can penetrate deeply into avascular cartilage and collagen. Bb can sequester in protected niches included tendonds. Bb is a sophisticated parasite, effectively co-opting host nutrtients and metabolites. Bb does not utilize oxygen or iron and metabolizes glucose via an alternative pathway. Bb is slow growing, fastidious, difficult to culture. Unique surface proteins play a role in bacterial survival. Lyme can readily change its antigenic appearance to avoid humoral antibodies. In mice, dogs and monkeys treated with extensive courses of antibiotics the organisms persists after 6 or more months. The disease can be seronegative and treatment refractory. Currently available testing modalities, including the two tier serological are limited. Symptoms of the disease can be non-specific and vary over time. Neurological disease is protean. Some patients have a syndrome of fatigue, cognitive changes and mood changes. Coinfection with Babesia has been established and may make the illness worse. Bb do produce blebs and cystic forms. Cystic form express different antigens and may promote resistance to the immune system and antibiotics. Intracellular infection has been observed athough thought to be rare by most researchers. Lyme is still a new and emerging disease. Although much is known, the science of Borrelia is still new and emerging as well.

The book is a superb source of basic scientific knowledge and I know I will be re-reading many chapters in the coming months.

The literati and the "cognoscenti" may agree on more than is commonly recognized. That is not to minimize the enormous gap between the two sides of the Lyme debate.

The text does not deliver as promised at the outset. It fails to show that literati have some self-serving agenda - apparently one of fleecing despartely ill patients, or hypochodriacts, but certainly folks who do not suffer with manifestations of borreliosis. Accusations of paranoid conspiratorial thinking and ethical shortcomings appear to be sophmoric.

Only a few odd statements and the final verses address the initial premise. The notions of chronic Lyme disease is dismissed. First off: "in order for spirochetes to persist without provoking discernable inflammation or an immunological response manifested by detectable serum antibodies, B. burdorferi would have to differ from virtually every other chronic systemic bacterial pathogen." And secondly, it is asserted that treatment of Lyme patients resolves the infection.

Actually The body of the text, the science such as it is, does not support either of these contentions

Thursday, March 22, 2012

Lupus and Larium

She is feeling fabulous, the best she has felt in more than a decade. Four weeks of Larium Babesia symptoms quickly return. Larium is restarted and shortness of breath and soaking sweats disappear. Mild aches, pains and headaches remain but are of no consequence. Strength and energy have returned; her brain is clear as a bell and she even plays tennis, which is remarkable. A little weakness on the left remains, but otherwise she is in remission. Treated with herbs extensively, maintenance therapy consists of low dose Western medicines.

We met two years ago. She was disabled. Symptoms included: incapacitating fatigue, severe cognitive difficulties, severe headaches, facial pain and numbness, weakness, "total body pain", low-grade fever and chills, sweats and insomnia, topping a much longer list.

Her history was complex. She presented me with a telephone book like folder filled with consultations, test results, and other documents from an army of specialists. She recalls a tick bite in 1989, initially brushed off, and was soon after diagnosed with aseptic meningitis. Mysterious recurrent episodes of Bell's Palsy occured. Numerous cranial nerve disorders appeared, involving: 6th, 7th, 3rd, 11th and 12th nerves. The diagnosis was mononeuritis multiplex. New onset complex migraine and seizure disorder appeared. An immunologist found low IgG levels and an endocrinologist found autoimmune thyoiditis.

Other prominent symptoms included: Marked, persistent left sided weakness (she is left handed), joint pain and swelling (multiple), pelvic pain and irregular menses, dizziness, loss of balance, decreased visual acuity, dyslexia with an inability to write or read, mixing up words, slow thinking, memory loss, complete disability and a total inability to attend to activities of daily living.

Lyme was considered and she was treated with four one month courses of Rocephin. Then the team of ID docs said this issue had been put to bed. A rhematologist diagnosed systemic lupus erythematosis. This diagnosis was to stay with her for years. Various treatments included, IViG, Cellcept and years of steroids. At times high dose intravenous steroids seemed to help.(The steroids have caused osteoporosis in this 36 year old woman).

After years of searching for a different answer she found an LLMD. Treatment at that time focused on Bartonella. She experienced some modest improvements. Searching further she sought the help of a chinese herbalist. This was more effective but she was still very sick and disabled. She was referred to me for aggressive Western medicine to complement the traditional Chinese approach.

Over the past two years (my treatment) I have treated her with a variety of antimicrobials: Zithromax, Mepron, Tindamax, Rifampin, Doxycycline, minocycline, Larium, amoxicillin, a few others and always plaquenil. She has been on plaquenil for years for lupus and is reluctant to go off it. Unexpectedly, She experienced a powerfull herheimer response with Mepron. Headaches, flu-like symptoms, fevers, sweats amd cognitive problems intensified. It was necessary to lower the dose and gradually ramp up. Ultimately, Larium proved more effective than Mepron/artemsia for Babesia symptoms.

The two best drugs turned out to be Larium and Tindamax.

I believe the synergy of Traditional Chinese medicine and Western medicine in this case was indispensible.

Thursday, March 15, 2012

Case in point

This 30 year old patient was well until 2 months after she had noticed a tick bite on the top of her head. Then, over time, she developed a coterie of familiar symptoms: fatigue, migratory joint pains, both large and small joints, headaches, numbness and tingling, muscle pain, brain fog, memory loss, confusion, trouble recognizing objects and performing mathematical calculations, lability of mood, night sweats, numbness and tingling, itching and others.

These symptoms waxed and wanted in various proportions over a six month period before I met her several weeks ago.(During this time she had been treated by two LLMDs).

To many readers the diagnosis is not in doubt.

So what does the lab say?

Prior Western Blots performed by Labcorp found, IgM band 23 and IgG band 41 alone.

A repeat by Stony Brook found IgM bands, 18,28,41,58,72,93 and IgG bands 58,62 and 93.
Even though Stony Brook identified 6 IgM bands, no 23 band was found. However, the 93band turned up in both the IgM and IgG series.

Both the 23 and 93 bands are considered so Lyme specific that for some ppractitioners either alone can suffice to cinch the diagnosis.

Of note: other bands such as 18 also vary by lab.

This was on my desk today.
I am not promoting any specific Laboratory.

Wednesday, March 14, 2012

Western blot biases

I think I have this one right.

Western Blot kits are either store bought or produced internally. These difference seem to lead to preferential expression of bands ostensibly related to variable degrees of antigenic expression.

Clongen and Labcorp (using the same kit) express more 23 bands.

Stony Brook expresses more 93 bands

IgeneX expresses more 30,31 bands.

Perhaps they are all correct.

I have found this helpful in my efforts to reconcile the different reports.


I will briefly present two patients with Lyme carditis and heart block. The first patient was urgently admitted to the hospital ICU with a heart rate of 18 twelve years ago. While the cardiologist prepared placement of a permanent pacemaker a Lyme test came back positive. A temporary pacemaker was placed and the patient improved. This patient developed an allergy to Rocephin and IV therapy was stopped prematurely. All told, his treatment included two weeks of Rocephin and another two weeks of oral doxycyline. I saw him this week. He is in robust health.

The second patient was not as lucky; I am treating her now. She too developed complete heart block, two years ago. A permanent pacemaker was placed. Her Lyme test was not CDC positive. She went on to develop a host of symptoms. Lyme was diagnosed by another LLMD. She had already failed months of oral therapy when we first met. She has started contemplating disability. She had miserable endurance and a brain that was not working. A SPECT scan showed diffuse hypoperfusion in both hemispheres.

First we treated for Babesia until the night sweats and flu like symptoms abated and then we started an intensive regimen of IV antibiotics, eventually to include 3. Six months down the road her brilliant brain is back. We are both thrilled. (Insurance only covered the first two months; she has gone broke in the process). Endurance still stinks and is ever so slowly improving. Ups and downs - going in the right direction. She still needs long periods of rest for recovery after only minimal activity.

She is half way through the disability process - now what?

A good quandary.

Monday, February 27, 2012

ADD and Herbs

A 56 year old heretofore high functioning business executive presented with multiple cognitive difficulties, primarily impaired executive function. Information presented to the brain was poorly processed. Watch for ADD or ADHD called "adult onset" ADD. There is no such thing. Adult ADD is the continuation of childhood disease. True ADD presents during early childhood and is generally associated with a family history. Symptoms may include: brain fog,trouble focusing, inattentiveness, spotty memory loss, inability to winnow out key information, slow problem solving, loss of mathematical and/or verbal skills, trouble following conversations, impulsively and others.

The SPECT scan in ADD and Lyme may show similar findings: decreased activity in the frontal lobes. In both cases, dopaminergic (drugs that promote dopamine neural pathways) may be of benefit.

In this case, fatigue, low grade fevers and joint, muscle pain, headaches and strange neurological symptoms including formications, ( feeling of something crawling under the skin) were also present.

And there was a positive Western Blot.

This highly intelligent patient at first did not want to learn about Lyme disease. "Just treat me as you see fit. Your the doctor." I explained to her it was critical she become Lyme literate. Its not as simple as bringing your car to the garage.

After two months she showed signs of improvement. At three months she was doing superbly.

She confided in me. She had added Samento, Banderol, Reservratol and Astralagus to the antibiotics: her own special mix. I guess she had been doing a little reading.

I pay attention to what my patients are taking. Some use the Cowden protocol. Other follow Buhner. Others take a hodgepodge of herbs such as: mushroom extract, olive leaf oil, oregano oil, teasel root - the list goes on. Many take a variety of vitamins and other non-herbal supplements. There is no one size fits all. My colleague who practices traditional Chinese medicines uses combinations of herbs, many not found on standard lists. He alters the mixes based on his clinical assessment of each patient. He has remarkable success. A lot like I do with antibiotics.

Successful CAM herbalist have studied there trade for years.

It seems online forums are replete with comments like "did you take this, did you take that, did it work for you?" Here's a hint. Folks who are better don't spend a lot of time on forums.

Do yourself a favor: please seen an expert.

Tuesday, February 14, 2012

Remission. Brown Recluse Spider

This 62 year old female went to a local ER complaining of a bite and a painful red rash with a high fever. She looked toxic and was admitted to the hospital. The rash was somewhat mysterious. She was seen by three different ID doctors who ultimately diagnosed staph cellulitis secondary to the bite of a Brown Recluse Spider. Neat diagnosis. After a few days she was discharged from the hospital.

She developed other symptoms and sought care elsewhere: joint pain, brain fog, severe headaches, numbness and tingling and others. She had periods of frank confusion. At times she was unable to speak.

Two LLMDS diagnosed Lyme and Babesia. She was treated aggressively, inclusive of several months of intravenous Rocephin. Eighteen months later, 70% improved, she walked into my office.

She was treated another 7 months. That was two years ago.

Today she came in for a non-Lyme issue - in complete remission for two years.

Brown Recluse Spiders do not live in Maryland. Their habitat includes the Midwest and the south.

Even if they lived here - they are generally docile and bites are rare. But they don't live in Maryland. Never have.

Still, this is a common diagnosis.


Wednesday, February 8, 2012

Low back pain

A 40 year old female awoke one morning finding she could not get out of bed - sudden incapacitating back pain - and other symptoms: severe muscle weakness and pain, numbness and tingling. Called 911. ER docs diagnosed acute back pain and sent her home - but also pulled some blood.

The phone rang a few days later. Lyme. Two tier CDC positive She had more symptoms: increasing joint pain, headaches, neck pain, sweats, and others. No brain fog to write home about. Pre-existing migraines became more frequent and severe. Back pain was exquisite.

An MRI showed a bulging lumbar disc. An orthopedist and chiropractor were satisfied.

Physical therapy and chiropractic manipulation did not help.
Oddly enough, the back pain improved with antibiotics. And nearly went away.

After one year of treatment for Lyme and co-infections, she stopped antibiotics - on her own, feeling better.

Now, a year later, she returns. Back pain has increased. Tingling, numbness, joint pains, jaw pain and low grade fevers are back. Migraines bad again.

She is worried Lyme is back. So am I.

A zillion people have bulging discs. Studies have shown that many asymptomatic people have herniated discs per MRI. (including me - I had sciatica years ago)

When the chief complaint is back pain Lyme is low on the list of differential diagnoses. It is the constellation of symptoms, taken as a whole, that changes the list Unfortunately, most doctors stop with the chief complaint and do not go any further. Other symptoms are for another day. If there are too many symptoms patient may be labeled "a crock." "High serum porcelain level" I heard in medical training. And God forbid the patient utter the word Lyme.

Bulging discs don't generally hurt. There are tons of causes of low back pain. Frequently, the cause is never known. Not in this case.

Kudos to the ER docs.

Thursday, February 2, 2012

25 band Doxycycline

A patient has joint pain, unimpressive, and otherwise doesn't looke "Lymie."

Stony Brook's Lyme WB reports 41 and 25 IgM bands, interpreted as negative by CDC criteria.

IgenX reports the "23-25" band as a single entity and would have reported the result as CDC positive.(I think).

Bands 22,23,24 and 25 have been associated with highly specific Osp C.

Labcorp reports only the 23 band, not the 25.

Interpreting these results in a low index of suspicion case could be tricky.

Question: Is it reasonable to use IgenX criteria when interpreting results from a different lab?

After 3 weeks of doxycycline patient feels better.

Does the patient have Lyme? Is there any harm treating if Lyme seems unlikely?

It is nice to know that unlike other tetracycalines, doxycyline is excreted in the feces (not the kidneys as well) mostly as inactive conjugates or chelates - having minimal effect on intestinal flora. (Goodman and Gilman).

Other Lyme non-believers believe doxycyline and minocyline are effective for arthritis, even rheumatologist. Gabe Mirkin thinks these drugs work because mycoplasm,chlamydia and others are associated with "reactive arthritis."

Reactive arthritis is a "real" entity described in Harrison's textbook of medicine. Of course long term antibiotics are not recommended.

Wednesday, February 1, 2012

HIDA scan and Mycoplasma

Sick for a long time this patient had already been to many doctors. Previous treatments included 9 months of Rocephin. She first saw me two months ago. Prominent symptoms included: cognitive dysfunction,depression, weakness, seizures, "TIA", headaches, tingling, joint pain, palpitations, neuropathic pains and gastrointestinal issues. The depression was profound, associated with suicidal ideation at times.

She had a history of sporadic abnormal liver test with marked abdominal pain. Belly symptoms including bloating, nausea, anorexia and difficulty eating which was chronic.

She had dysautonomia and POTS.

There is much more to the story.Of course.

Lyme has been confirmed by IgeneX and Stony Brook. A recent Western Blot showed IgM bands: 41,18,20,30,31,37,38,58,60, The test showed 5 IgG bands.

Physical examination showed tenderness over the gallbladder.

The abdominal sonogram was negative for gall stones (it always is).

The HIDA scan was entirely normal. Here's the catch. The injection of CCK which makes the gallbladder contract reproduced her severe pain.

A surgeon friend has found this sign may be associated with gallbladder disease even with normal studies.

Her gallbladder was removed.

Then - something remarkable happened: she felt great, even off antibiotics.

Weakness,cognitive dysfunction,neuropathic pains were all better. Orthostatic tachycardia had improved significantly.

No longer using a cane, she was playing the piano - first time in over a year.

She sent a piece of gallbladder to Clongen for PCR testing for "everything."

The result was surprising: Mycoplasma species. I have no idea what to make of this unexpected finding.

Mycoplasma is an intracellular bacteria. You can never get rid of it.

Sunday, January 22, 2012

Definition of insanity

One patient with chronic Lyme called NIH hoping for acceptance into a new study. More research. Great. At least someone with gravitas thinks the jury is still out. The questionnaire sounds promising: tick bite, EM rash, joint problems, facial palsy, fever or chill, muscle pain, stiff neck, headache, heart problems, swollen lymph nodes, shooting pains in the hands/feet, cognitive problems, trouble finding words. This is the telephone screening questionnaire.

Patient's Western blot pattern: IgMs, 23,41,18,58,66 and 93. IgGs, only 41,64 and 68 A bust. Entry into the study requires a positive ELISA and 5/10 specific IgG bands. Rare findings.

Patients with long-standing Lyme disease have variable antibody responses. New IgM reactions can develop in late Lyme disease. IgM antibodies correlate with active infection, not IgG antibodies which tend to be protective.

Patients with strong persistent IgG bands may on average be healthier than other groups.

My patient complains she is very sick while a neighbor with 8/10 bands is very well.

A prospective study of antibody patterns seen in acute Lyme patients with persistent symptoms over time could help settle the issue and be relatively easy to do.

The unproven "CDC criteria" proposed by Dressler one weekend in 1994 has remained the unchallenged law of the land.

This same patient selection criteria has been used over and over again in NIH sponsored studies.

A definitions of insanity is repeating the same thing over and over expecting a different result.

Friday, January 20, 2012

No box

In 2002 I didn't know much about Lyme. My patient suffered with a paralyzed diaphragm. He was in misery with every breath: only one lung could expand. A trillion specialist said he was a medical mystery. Idiopathic. Once I heard Gabe Mirkin say: Idiopathic means the doctor is an idiot and the patient is pathological. True in this case. My notes show I actually thought of Lyme even back then. He became one of those troubling patient, anathema to every primary clinic. So many complaints! fatigue, depression - at times suicidal, brain fog, memory loss, total body pain - the list went on. I was empathetic and used all the tools in my box - band aids. Somewhere along the trail I became "Lyme literate." Antibiotics helped a little. The diaphragm still wouldn't move and overall improvements were modest. In 2008 if finally sent off a blood sample to Clongen.Positive Babesia PCR. The PCR was positive!

In short, Mepron turned his life around. He could breath. Everything got better. He was even happy. Unfortunately, every time Mepron was stopped he crashed. Nothing else worked.

Recently,his employer suddenly cancelled Cigna. He was now pushed into Kaiser. He was told that his "Cadillac plan" had to go.

Today he came in just to lament.

He tells me the new Kaiser doctor mumbled something about about hindsight which didn't make any sense. The doctor told him there was no way he was going to prescribe Mepron for something "they" didn't believe in.

The doctor said he didn't know what a PCR is, and there is no box to check on the lab requisition to order a PCR. No Box. I had to repeat this over and over again to make sure I got it right.

The patient doesn't know what to do. He can't afford $1100.00 a month for the drug.

No box.

Thursday, January 19, 2012

Babesia: confirmed case

An unexpected page last Sunday. Call.... about...., 1-800 number, blood parasites. Strange message. I called the number back and ask for the name displayed on my beeper. The caller was a hematology tech from one of the "mill" labs. She had just seen parasites in the red blood cells of one of my patients: ring forms with some extracellular forms. She told me she needed to go over the slide with her supervisor in the morning for "speciation." We were both very excited.

The Maryland state health department states there has been only one confirmed case of Babesia in the state. Hence, all the ID docs dismiss all positive Babesia serologies as "false positives."

One of my patients made a ranting youtube video after consulting two ID docs at Hopkins. He is very sick and showed them: positive serology for B. duncan, a positive FISH test and a positive PCR test. One of the docs didn't know what B duncani is. He was told: " We don't use that lab." (IgeneX) "What lab do you use," he inquired. Response: " Different labs - we just don't use that one."

The health officials says PCR (false positives, experimental) isn't good enough to confirm a case. You need microscopic confirmation.

Here it was, the second confirmed case in the state of Maryland I thought. (Incentally, the same mill lab posted positive serology for B. microti for this patient).

But somewhere in the back of my mind it knew it was too good to be true. The supervisor from the lab in NC told me: " well, its only in a few cells, not enough for me to call it, will report it as a possible parasite, unable to "speciate."

"I am not looking for a species identification, just a genus."

Point ignored: "We see a lot of plasmodium in our lab."

"Well they are easy to see," I told him, "infect a lot of red blood cells. The point with Babesia is only a tiny percent of RBCs are infected - and the ring form is a classic presentation!" I got the impression he didn't know what I was talking about. "How many Babesia do you see in your lab?"

"About one per year, mostly from New England."

He suggested that I order a PCR to confirm the diagnosis if I suspected it. Fat chance.

He agreed that the tech did a great job and was sorry he couldn't help.

Friday, January 13, 2012

Continuous or pulsed

Two patients yesterday with neuropsychiatric symptoms responsive to amoxicillin. One patient claimed that Moxatag, a long acting drug, was more effective than traditional short acting amoxicillin. The other adamantly claimed the opposite.

The question about continuous therapy versus pulse therapy is controversial and unsettled.

At least one(Lyme)study showed that continuous exposure to drug, even at lower concentration was more effective(had better killing kinetics).

Test tube study.

Clinical support: Long acting Bicillin (penicillin) works very well despite low blood/tissue concentration of drug.

Amoxicillin reaches a peak blood level without hours and is rapidly excreted with preferential penetration to some tissues. In-vivo(you), tissue concentration may be higher than shown with in-vitro(test tubes). Don't know.

IV antibiotics with long half lifes - Rocephin and Zithromax can be very effective.

Oral antibiotics behave differntly in the body than IV for a number of reasons.

I currently prescribe amoxicillin as 500 mg, two twice daily. Perhaps one four times per day would work better. There are practical limitations: better adsorption on an empty stomach, scheduling doses.

My impression: continuous better than pulsed.

Thursday, January 12, 2012

Third opinion

Here is a patient who states he has been sick his entire life - seeing a parade of doctors for as long as he can remember. Childhood was tough and he was maladjusted. Diagnosed with: learning disabilities, ADD, depression and Asberger's syndrome at varying times. Always sickly, missing a lot of school. Abdominal pain, fatigue, fevers, colds, flus, headaches and other ailments. Now treated for depression and sleep apnea he feels he is not thinking as clearly for the last year. He notes: increased anxiety, trouble finding words, worsening depression, more ADD symptoms. He also admits to drinking too much and using marijuana about three days a week. Things have not gone well at work or at home recently.

He recalls removing a tick from his dog a few years ago - not sure what kind. He has some vague pains in his joints and muscles, occasional pins and needles in his hands and feet, some twitching around his eyes and occasional tremors. He grew up in Arizona in the 70s, moved here 10 years ago. And then someone said: get a Lyme test.

An LLMD sent extensive tests to IgeneX. Everything was negative except the Lyme Western Blot. He had IgM bands: 18,31,34. He saw an LLMD who diagnosed Lyme. He was treated with herbs and a month of antibiotics. It didn't help. He saw an infectious disease doctor who ordered a Western Blot through Labcorp. Only a 23 IgM showed up. He was told he did not have Lyme disease.

He now wants a third opinion - great.

A Western Blot from Stony Brook showed IgM bands 41 and 93.

His exam showed a mild postural tremor, otherwise normal.

OK, so maybe you are thinking he got Lyme by vertical transmission from his mother. Seems pretty unlikely in Arizona in the 60s.

The labs are positive for Lyme, right. All three labs found highly specific bands; they just didn't agree. Not even a little. Labcorp, 23 band, OspC. IgeneX 31,34, Osp A and B. Stony Brook 93 band, flagellum protein, only found in Lyme.

He didn't Herx.

I ordered a course of high dose antibiotics and asked the patient to return for a Lyme PCR in two weeks.

I am discouraged about Western Blots. All three labs use different kits and different procedures. I have noticed certain biases. Labcorp gets a lot of 23s. Stony Brook gets a lot of 93s. And IgeneX finds more 31s.

People can interpret the tests according to their own biases. The IDSA is wrong but all test results need to be interpreted with caution.

This is a frustrating case. The next test will likely be negative.

My answer: Lets fix the other stuff and then see what remains. He needs to be checked for: B12, Vit D, Celiac and a few others. Perhaps I can be persuaded to check: DHEAS, Histamine, Copper, Zinc, TIBC/ Ferritin, TSH and thyroid antibodies with new guidelines and screen for heavy metals.

Sorting out the chaff from the grain is not going to be easy.

I would be doing him a disservice if I treat for Lyme now.

Acupuncture and traditional Chinese herbal therapy would be much better than what I have to offer - along side Western psychiatric help.