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.
Friday, April 27, 2012
Date
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.
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
Cure
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?
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
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