Notes Concerning Jaller Case

Paul Mall

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Overtherainbow

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Keebler

Honored Contributor (25K+ posts)

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Overtherainbow

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Member # 19199

MONDAY, JANUARY 12, 2009

Doctors know about the Lyme controversy- they just are not up to date

The lay public is clueless about how doctors are educated and how they stay up to date. The above statement reflects the beliefs of most patients I encounter on a daily basis. They are wrong. Dead wrong.

Doctors do turn to trusted sources when researching a disease and/or looking for topical updates. Practicing doctors are completely unaware of the raging controversy which has been going on for many years now. Major players on the two sides of the dispute are listed below. It is unlikely that a diligent physician looking for information about Lyme disease would encounter any information suggesting that the IDSA guidelines are in dispute. The current maneuvering of the IDSA is designed to ensure that the status-quo remains unperturbed.

Group number one:

Chronic Lyme is real:

ILADS: marginalized- a fringe group.

Dr Burrascano- Medical board issues- discredited.

Dr. Jones- Medical board issues- discredited.

Dr. Jemsek- license to practice in North Carolina suspended- thoroughly discredited

Dr. Horowitz- ILADS president- emphasis on CAM- ridiculed by mainstream- evidence based medicine

Dr. Stricker- discredited in various and sordid ways- none credible

Other ILADs physicians- off the radar- no academic credentials- irrelevant

Dr. Donta- Good credentials- Professor of infectious disease medicine at Boston University- No publications in highly esteemed journals like New England Journal of Medicine- marginalized- a single voice- an outlier.

Group number two:

Legitimate- dependable sources of Medical information:

There is no chronic Lyme:

IDSA

CDC

Harvard

Mayo Clinic

Johns Hopkins

All other prestigious medical universities ? Columbia: "Fallon is not a real doctor- he is a psychiatrist- his work doesn't count"

All major textbooks including Harrison's textbook of medicine- all current textbooks of infectious disease medicine

"Up to date"

Quack Watch

Neurologists and their professional organization

Rheumatologists- rheumatology literature and texts

The New England Journal of Medicine

99.999% of practicing infectious disease specialists in the US

Dr. Wormser

Dr. Steere

Local community specialists

US University specialists and medical school professors

Primary care physicians who defer to the above mentioned sources for judgments and recommendations

State Medical Boards and governing authorities

No, doctors are not lazy or poorly informed about new developments in the field of chronic Lyme disease and tick borne illness. They are entirely up to date.

When well informed physicians encounter the treatments of LLMDs along the way they will know one thing for sure. If it looks like a duck- Quack.

PS: Let there be no confusion about what I believe. The so called discredited physicians mentioned above, have been unfairly persecuted. They are all heroes- who have advanced the understanding and treatment of Lyme and related illness at great personal cost and to the benefit of thousands of patients afflicted with this horrific illness.

10 comments

TUESDAY, JANUARY 6, 2009

CD57

What do these letters and numbers mean? The study of immunology is complex and confusing. I will try to simplify this, but it still may be hard to follow. Don't worry- most doctors don't get it either. Lymphocytes are the major white blood cells involved in the body's immune responses to infection- and other conditions, including cancer. They have been subdivided based on receptors located on their surface. The "expression" of these receptors is the basis for categorizing the various types of lymphocytes. The various types of lymphocytes have been shown to have specific functions. Lymphocytes express multiple receptors. The CD8 cells are generally referred to as killer T cells, not to be confused with natural killer T cells. The CD4 cells are referred to as helper T cells.

The initial response, the innate response, is directed by lymphocytes. The natural killer T cells, defined by receptors found on their surface, constitute a very tiny percentage of the T cell population. Nonetheless, they have an important role in fighting infection. Laboratory scientists have developed specialized technology which allows for the separation of these various subsets of lymphocytes.(Flow cytometry).

Most natural killer T cells (NKT cells) are associated with a surface receptor referred to as CD56. The CD57 marker is associated with a smaller subset of NKT cells. Interestingly, these surface receptors (CD57) have been found on both CD8 cells and CD4 cells. Normally, one would expect these markers to be found on CD8 cells- the population of killer T cells.

A powerful CD57 response is associated with Lyme infection and with other bacteria as well. Other spirochetes do not invoke this response because the structure of their cell wall is different. The unique thing about Lyme (Bb) is that it has lipo-polysacharides on its cell wall. This is antigenic(antibody producing) material, which is devoid of protein. CD57 cells respond to this type of antigen whereas other NKT cells do not.

The initial immune reaction- the innate response, involves the mobilization of CD57 cells and other T cells as well as cytokines and other chemicals. Normally, a secondary acquired immune response should follow the innate response. This is mediated by B cells aided by helper T cells. Ultimately, the acquired immune response fails. Lyme (Bb) is driven inside the cells as L-forms. B cell responses do not work here. It then falls on T cell responses to become the body's major immune response needed to keep Lyme and other intracellular germs at bay.

CD57 responses involve the same pro-inflammatory cytokines as seen in Th1 helper T cell responses.

If CD57 responses are low, it may mean that these cells are being consumed by the immune system in the fight against Lyme. If they are high, it may mean that the body is busy cranking out the T cells to assist in the fight against Lyme.

There is little published regarding the clinical usefulness of this test. Dr. Stricker has reported that this measurement "May" be helpful in assessing the degree of illness seen in chronic Lyme patients.

So I have been ordering this test for years. Thousands. Unfortunately, I am left with the conclusion that it has been of very little help to my patients. I have seen no correlation between CD57 and disease activity. Patients in clinical remission may have very low levels and patients with end stage tertiary Lyme disease may have very high levels. Individual immune responses are difficult to predict. Dr. Burrascano has suggested that the CD57 test might be an inexpensive way to screen for Lyme disease. I do not agree. Physicians may order CD57 levels because they are looking for evidence to support the diagnosis. I do not think this approach will not hold up to careful scrutiny. Many patients unfortunately are getting the awful 13 band test performed at "mill labs." Patients don't want to spend the money to get a decent Lyme test. I do throw out a wide net looking for a variety of markers associated with Lyme disease. I could argue that the vitamin D reversal pattern, a possible marker of the Th1 response, is a much better screen for patients with Lyme disease and other chronic intracellular infections.

I have seen recent published statements claiming that it is not known how CD57 and Lyme are associated. My research shows otherwise. (If you could follow any of what I said about it). However, in my opinion and experience, this marker has not been clinically useful.

7 comments

FRIDAY, NOVEMBER 21, 2008

Odds and Ends

I don't use alternative therapies. Sometimes C.diff and other issues make standard therapy impractical. Patients can try protocols described by Buhner, Coweden and others. I have not found such therapies to be terribly effective in my patients. Salt and C: I don't use it. Anecdotal reports of its efficacy exist. This dove tails with one of the weirder aspects of the disease. Some patients with Lyme claims to see worms in their stool. It has been suggested that this is an unknown microfilaria species. Patients have in fact brought me stool specimens with visible worms. Labs have not IDed the organisms . The first thing the Willie Burdorfer saw in tick guts was worms. I don't know if this species has been characterized. High levels of Na in the gut may have an osmotic effect and act as a de-wormer as has been suggested by some. For such patient, Ivermectin has been tried. Sometimes it seems to help- I am reluctant to recommend this therapy at this time. Dr. Stricker who treat many Morgellons patients uses this anti-parasitic medication with some success. There is some connection between Morgellons and Lyme disease. This is outside my comfort zone.

My expertise(if I have any) has accrued over time. The combinations of drugs I used two years ago were more empiric then systematic. My approaches now are more regimented. I am not sure this has improved the results. For example, when I first read about LD treatments, I noted that Jemsek reported success with Cipro and Doxy. It didn't occur to me that I might also be treating "Bartonella." I used Rifampin because many patients reported that it had been effective; maybe this too was treating something other than Borrelia. The treatments were more hodgepodge. So when I review the cases of patients I have treated over time it may reflect an evolution in my general approach. It is still evolving.

IVIG sound great: I can't prescribe it because of standard of care limitations.

Invanz is a 24 hour drug with a broad spectrum of coverage. There are variable responses of drugs within the same class. I mentioned it based on one anecdote. It might be a great addition to the available arsenal. Most antibiotics require more complex dosing strategies. Unfortunately we have no data regarding the use of many antibiotics including this one.

Whether patients get very ill probably depends on a host of factors. Some strains of Bb may be more pathogenic. The mix of co-infections varies. Individual immunological responses based on genetics may play a large role. Some of this may be medicated by major histocompatibility molecules(genetically determined). Some patients only have IgM responses which made bode poorly versus those patients who develop a robust IgG response. So far we cannot do much about individual genetic based immune responses, but such things may have prognostic and or treatment value.

17 comments

FRIDAY, OCTOBER 10, 2008

Clongen Labs: Where have I been?

I just had an exciting conversation with Dr. Kilani. He is the director of Clongen Labs. It turns out that Clongen is on my street, literally a 5 minute walk from my office. Dr. Kilani is a well trained clinical pathologist/molecular biologist. He has some international acclaim. His specialty is PCR testing. He developed the first PCR test for Blastocytis, a controversial GI parasite. He has done extensive research on Morgellonsdisease including and analysis of its genome (looks like lettuce?). His current thinking is that it is a small worm pathogen from the botanical world which has acquired genes which allow it to infect some humans. This follows the current theory of Dr. Stricker, the leading Morgellons doc in the country. It does highly correlate with Lyme infection.(Luckily I only have one Morgellons patient in my practice). He performs a Lyme Western Blot which has more bands than the IgeneX test. He reports that in a few patients not only do WB bands appear, but the whole strip turns black! He postulates an autoimmune reaction. He offers a PCR test for Mycoplasma fermentans, a Lyme co-infection. Up to now I have not been testing for this. He has a PCR test for Bartonella which is based on non-specific areas of the genome and covers 20 different species. (I think that's what he said; our conversation covered a lot of topics). He has ultra sensitive PCR assays and tells me that he gets a fair number of positive results for Lyme. He is well trained in microbiology and parasitology. We talked about the Babesia problem. He thought that Babesia patients were all critically ill. I corrected this misconception. We discussed the PCR problem here: if you don't know the DNA of the species you are looking for the test will not get you the answer you seek.(There is no broad spectrum PCR test available here). He is willing to do blood smears with a variety of stains, (trichrome may the best), to look for blood parasites. He does offer a variety of super sensitive PCRtests for other co-infections as well. This testing is expensive and I will have to evaluate which tests are cost effective. He is working closely with Dr. Jones and other LLMDs, performing various assays. He told me that Lyme IS sexually transmitted. Apparently he has done PCR on semen and vaginal secretions which were positive. I think we can settle part of this issue. He also has a sensitive culture medium forBorrelia. I will try to find a WB positive Lyme patient, who will be willing to donate such samples. (This may take a while to find). This should be done before any antibiotics are given. If the PCR is positive, he will attempt to culture the specimen for Bb. This would be a step closer to proving the sexual transmission hypothesis. He is also doing research on developing a new Lyme vaccine. We agreed that the previous Lymerix vaccine was doomed from the start. It was based on OspA which is down regulated in early Lyme and only shows up with advanced disease. He thought this might have been the cause of the autoimmune reactions associated with the vaccine. Clongen's vaccine, under early development, will be based on OpsC, which is present in early Lyme. I had an extended conversation with Dr. Kilaniabout many facets of laboratory medicine as it applies to tick borne infections. He will be at the ILADS meeting next week. He agrees that Lyme is a burgeoning plague of untold proportions. He has an extensive menu of PCR tests, covering the extended spectrum of infectious agents around the world. I'm afraid he is about to fall into the black hole of Lyme. Brilliant guy! Great for us.

17 comments

MONDAY, JULY 28, 2008

Am I Lyme Literate?

I have been accused of not being Lyme literate by a lay person who has her own web site and blog. She feels I am misleading people. I don't know if it is appropriate to defendmyself; but like most physicians, my ego pushes my in this direction. She claims that Lyme is transmitted by breast feeding. This makes no sense to me and I have seen no scientific evidence to support this. Lyme can not be found in body fluids and it not transmitted by the gastrointestinal tract. Infants who have Lyme probably got it through the placenta. There is science to support this. She claims thatsamento is a crucial part of Lyme treatment. Many patients who come to me have used this extensively. It may have modest benefits but has not cured anyone. I have no problems with patients using this as an adjunct, but to date there is no science to support its use. Mr. Buhner has written a beautiful book about Lyme. The science of Lyme infections is well described and documented. He offers herbal therapies, but no science to back up the use of these therapies. It has been reported that the Cowden herbalprotocol helps Lyme patients. This is a difficult and expensive therapy. Again, it lacks scientific support. The Top Ten Treatments by Rosner is filled with mistakes and misinformation. The Marshal protocol refutes the importance of treating non cell wall, intact spirochetes. Marshal is a PhD, not a MD. His treatment was initially used for sarcoidosis not Lyme. He claims only a 30% success rate with Lyme.Plaquenil is not an anti-cyst drug as stated. The vitamin C and salt therapy is questionable and has helped very few patients. The same can be said of the rife machine. Dr.Burrascano is without question one of the best Lyme docs. he recommends a plethora of supplements. Apparently he cured himself without taking these supplements and used high doses of Ceftin. I can't list all the supplements here but they include: alpha lipoic acid, co-enzyme Q10, Carnitine, magnesium, multivitamins, methyl-cyocobalamin(which is an expensive form of vitamin B12) omega-3 supplements and a host of other supplements. If you take all these things you end up taking a medicine chest full of supplements. There is no scientific evidence to support any of things. I, my patients and family members have recovered without these things. To the best of my knowledge, Dr. Stricker and Dr. Jemsek do use these things and they are arguably the best Lyme docs in the country. I see many patients who have had their fillings removed; been tested for every parasite in the book; had saliva tests for cortisol levels; been treated with a plethora of herbs and alternative therapies, who ultimately come to me because they have not gotten better. I disagree that stage three Lyme is not curable. Many stage 3 Lyme patients have been cured or at least put into long term remission. Chronic Lyme is still outside the mainstream box. I use therapies which have some proven benefit or least are based on clear logical principals encompassed both in the art and science of medicine. Some patient have been treated with what I consider dangerous therapy like intravenous hydrogen peroxide and colloidal silver. These treatments have been given by the best known "LLMDs". These same doctors who once used the Marshal protocol now load patients up with vitamin D not understanding the immunology of this compex hormone. I see patients who have not gotten better with other docs and I am willing to take on very difficult patients. I treat patients with severe Lyme and all its known complications. I do not claim to be the best Lyme doctor. I welcome positive feedback. My intention is to write a patent's guide to Lyme from a physicians perspective. I like questions because they help me in this regard. Patients should be aware that there are as many opinions as their are LLMDs. Lyme patients need to become Lyme literate themselves and seek a variety of opinions and opinions. I have no agenda in writing this blog. I find it therapeutic and I hope it helps some patients. During an office visit I do have time to cover the vast the details of the science and controversies of Lyme disease. I hope this forum helps with the educational process. I also welcome feedback from patients which I find very helpful.

14 comments

MONDAY, JUNE 2, 2008

What are good resources for Lyme information?

ILADS is an excellent starting place. The ILADS guidelines are evidence based and provide the basis of a scientific rational approach for the management of chronic Lyme disease. Dr. Burasacanno's guidelines have been published on line for many years and provide the "Bible" of chronic Lyme providing the foundation for many Lyme doctors. Dr.Jemsek has written much about the basic science of Lyme and his approach to the disease. He is an excellent resource. Dr. Stricker has written much, particularly about the Lyme controversies. He has done many nice reviews of the science, the literature and the state of the art. There are many new books coming out, many which I have not yet read. The Book Healing Lyme provides an excellent summary of the nomenclature, science of the organism and a description of the controversies. Regarding the herbal therapies he suggests, I have no opinion. The book the "Top 10 Lyme Disease Treatments" has some interesting information, and some with which I disagree. I do not agree with his recommendations regarding antibiotics and believe some of the information is incorrect and misleading. The information about the Marshall protocol is of interest, but most clinicians have not found this treatment to be effective. The emphasis on Salt and Vitamin C appears unwarranted to me. The discussion of the rife machine is interesting. Some of my patients have invested in these devices and found them somewhat effective. They are expensive and do not seem to cure anyone. Much of the discussion of alternative therapies is interesting, however these things are not of proven benefit. This book has some good and bad points. I do not recommend it as a primary source of Lyme information. I suspect that support groups such as the National Capital Lyme Association may also be a good resource. I am a little leery of internet groups because they have the potential to disseminate a lot of misinformation. More later.

0 comments

WEDNESDAY, MAY 21, 2008

My test was negative: What makes you think its Lyme?

Lyme is a clinical diagnosis. No laboratory test can be absolutely relied upon. Even the CDC agrees with this. There are many studies to support this. Check out the ILADSwebsite regarding this issue. I believe the diagnosis can be reliably made. Most of the diagnostic approach I used is unpublished. Some of it is published as fragments. What I try to present here is the whole, based on my experience and careful thought about this puzzling illness. The diagnosis must be suspected when patients live in regions where the disease is known to be endemic. Most patients present with an array of symptoms that are typical of the disease. Again, for the most part I am speaking of chronic Lyme disease, not the acute forms. Fatigue, pain, numbness and tingling are almost always present. Headaches and a loss of balance are very common. But it is the cognitive aspects of the illness which grab my attention. The online brochure available from the ILADS website entitled "What psychiatrists should know about Lyme disease," is very instructive. Lyme readily attacks the brain and central nervous system. The brain symptoms of Lyme disease are thought to be mediated by three effects: direct invasion by the bacteria, local inflammatory effects from the elaboration of neurotoxins, and autoimmune effects caused by the infection. Physicians call Lyme affecting the brainneuroborreliosis. A review of Lyme related medical literature might give one the impression that this is relatively rare. In my experience it is the rule, not the exception. The most consistent symptoms are problems with word retrieval, trouble with concentration, short term memory loss, brain fog, episodic confusion, a generalized slowing of cognitive processing necessary for critical thinking, analysis and problem solving. Frequently only the patient is aware of these symptoms and not observed by family members. Psychometric tests available at research institutions such as Columbia University can demonstrate these sometimes subtle changes.

Chronic Lyme patients with neuroborreliosis have abnormal physical exams. This appears to be universal. The abnormalities my be subtle and easily missed. Lyme does not effect only the brain; it affects all the parts of the nervous system, including the cranial nerves and the peripheral nerves. Cranial nerve abnormalities include some of these signs: A partial Bell's palsy may be present, which is drooping on one side of the face, the eyes may not move all the way laterally when the patient is asked to look all the way to the side, the tongue may deviated to one side.the uvula may be deviated to one side or the soft palate may move poorly and there may decreased sensation on one side of the face when tested with a sharp object. All of these findings are abnormal, common and frequently seen in Lyme patients. Abnormal reflexes including the Babinsky response and the Hoffman response may be frequently seen in Lyme patients.

A common finding is a decrease in sharp sensation seen in the distal arms and legs. This is referred to as a stocking and glove pattern of sensory loss. Many patients have a loss of vibratory sensation seen with a tuning fork test. History and physical findings can by themselves strongly suggest the diagnosis of chronic Lyme or a similar condition.

Abnormal lab findings may be more common than thought.. The expanded Western Blot test from labs like IgeneX is more accurate than results obtained through other labs. The C6 peptide antibody test for Lyme is a new test. I find this test helpful. I interpret the results differently from most physicians. The explanation for this is complex. The CD57 (Stricker panel) measures a subset of natural killer T cells which are typically depressed in chronic Lyme. Complement activation, an immunological response to infection and inflammation can be demonstrated with measures of C3a and C4a. Vitamin B12 and folic acid levels are frequently depressed. Vitamin D levels may show a reversal pattern. The inactive form is low and the active form is high. This may be due to a compex action of L-form, intracellular bacteria which suppresses normal immune responses. This is complex an will discussed elsewhere.

Imaging tests including a contrast brain MRI and a SPECT orSPECT scan may show abnormalities associated with Lyme involving the brain.

Diagnosing Lyme is complex, but can be reliable when a mix of tests and methods are combined.

The presence of co-infections is another important clue to this disease.

0 comments

2/3/09

Will there be any organized response from Maryland Lyme groups?

As you know, I offered to help him before.. first through you and info I shared ... and I also called his office and left my info and details for him to contact me so we could help him back then.

He didn't respond so I have to assume he doesn't want our help? All docs that have wanted me to help in the past have called me and asked for help.

Once I see the charges and speak to them and their lawyer, I make a plan with them to move forward. I just can't butt in... nor go off helping in my own way because, as you know, it could backfire... and it has happened before when others have done that.

I also tried to stop the "gang" from busting him on LNE. I can't believe because our groups wouldn't share info on him .. in order to protect his butt from their wrath- and XXXX was in that deal with them... that they actually called his home at night and hung up on his child when she answered. That was back when they were busting on me and all the Maryland groups (harassing, slander, etc) ... about whatever it was that time around.

For my efforts on his behalf- which you know I had a hard time dealing with- he basically contacted me out of the blue by email and told me to butt out.

Since he is tangled up with Hopkins ducks ... and as you mentioned wasn't cool at all about ILADS docs (sympathy isn't running deep after busting on them, especially in public- and they HAVE seen it) ...

And he continued to blog and put out what he is doing treatment wise for the world to see...

AND.. he even mentioned Quackwatch on his blog ... so you know XXXX is on this guy big time... and he has saved all the dirt from every site he has ever written or his patients have written on....

I'm afraid he has dug himself into a deep hole.

You know me and you know I will go to the ends of the earth to protect our docs. Especially Maryland docs, if the time ever comes.. and they know that. BUT..

Unless he asks for our help ... there really isn't anything we can do for him.

HTTP://LYMEMD.BLOGSPOT.COM/

TUESDAY, FEBRUARY 3, 2009

PLEASE READ THIS- IT MAY BE MY LAST POST

This should be my last entry.

My lawyer has advised me to stop treating all Lyme patients.

He has advised me to send all my Lyme patients "somewhere else." Just where that is he doesn't say. The fact that there is virtually no one to send them to- underlines the point that I am the outlier- the target.

I have been under active investigation by the Maryland State Medical Board for over 18 months.

Five patient charts were subpoenaed based on a complaint filed by an infectious disease-IDSA doctor.

The cases have been sent to peer review. That means that 3 IDSA doctors will be passing judgment about my care of patients. In Maryland, Johns Hopkins is the final arbiter: They say there is no chronic Lyme disease. I will be evaluated to see if I am within the standard of care. The mainstream/IDSA sets the standard. Period.

I will loose. Bank on it.

My medical license may be suspended or I will be instructed not to treat Lyme

disease. Then I can take my case to court. I need political pressure to help in this fight.

I will end up in legal battle which will cost more than $100,000, which I do not have. This apparently will be the first case of its kind in Maryland. My colleagues who charge up to $3000 up front are in a financial position to fight this fight. I treat many patients for free or practically nothing.

If I am going to have a chance to win the inevitable court battle I need your help.

Please contact the Maryland General Assembly- you can get info on line.

Write/call your local congressman. Write call/fax the Senate President Thomas Miller, Jr 410-841-3700, 301 585 3700 and the speaker of the House Michael Bush 410 841 3800, 310 858 3800.

If I do not get support from my patients/readers- I will have to "go away."

The only issue is: Can I prescribe long term antibiotics for Lyme disease. That is all.

Thank you for your attention.

5 comments

SUNDAY, FEBRUARY 1, 2009

The war: IDSA vs ILADS

physicians/scientists are a conservative lot. They operate within a paradigm- a construct of ideas the theories which form the basis of the reality or truth from which they operate. Unfortunately, physicians sometimes confuse a working paradigm with absolute truth. A blurring of this distinction makes it easier for physicians to treat patients on a daily basis.

A popular metaphor is "the box." People are said to think within the box or outside the box. Physicians who treat chronic Lyme disease are challenging the conventions. They challenge not only the prevailing paradigm, but they challenge the process which creates and massages the paradigms which form the basis of contemporary medical practice. It is also a story of the few taking on the many, a tale of David versus Goliath.

Both sides, IDSA and ILADS, can become very determined, arrogant and angry as they posit their points of view. This has the effect of pushing the other side into a defensive posture. The defensive posture does not lend itself to listening or collegiality; instead, it can create a more bellicose tone. I think some readers have a hard time understanding the vitriol found in the IDSA-ILADS paradigm war.

As the war between the IDSA and ILADS has played out, the IDSA has become more dug in. The guidelines have become more rigid, less flexible. The mainstream has clung tenaciously to its Bible. I would argue that the "Bible"- Harrison's textbook of medicine and other iconic sources allows for more lee way than the mainstream opinion would have one believe. History has shown that minority opinions frequently turn out to be correct.

The fight has morphed into a populist movement. Patients and Lyme treating physicians have tried to sway governmental politics. Those who do not know, a prior, that chronic Lyme does not exist, can easily see the "truth" to this side of the argument. Physicians who do not have a dog in the fight, those who don't know enough about the issues to have an opinion, stay mute on the sidelines. The political machine of mainstream medicine, with its certainty and arrogance, sits tight in its opposition, ever convinced that it will prevail. The fate of Lyme patients, many of whom are desperately ill, and their physicians, many of whom are passionate in their mission to heal- hangs in the balance.

Chronic Lyme is a very real medical issue. This is why I push for a mainstream look at the issues, which avoids CAM and other medical practices for which organized medicine has nothing but disdain. Whether or not herbs and accupuncture work is another fight for another day. My fight is about germs, antibiotics, physiology, immunity, molecular biology and medical practice.

8 comments

FRIDAY, JANUARY 30, 2009

Lyme and a knock to the head

A 31 year old female aquatic animal trainer presented to me 6 months ago. She had been referred by another patient. She complained of headache, dizziness, fatigue, muscle weakness, a loss of balance, tingling and numbness, blurred vision, decreased coordination, episodes of confusion, brain fog, anxiety, irritability, palpitations and episodes of random sweats and chills. The headaches were particularly bad. They were daily, felt like pressure in the front of her head and interfered with sleep.

All the symptoms were new. The symptoms were getting worse. About 2 months before she suffered a closed head injury and a concussion. She had been butted in the head by a dolphin. Initially, I filed this part of the history away and focused on the Lyme evaluation.

Let me insert that she had previously seen numerous physicians including a neurologist. A Brain MRI was negative. No diagnosis or therapy had been suggested.

She tested positive for Lyme disease and seemed to be a fairly typical case. She had a lot of muscle weakness and poor endurance with a loss of strength. The sweating pattern suggested a typical Babesia co-infection syndrome. Treatment with antibiotics produced slow and steady improvement. Antimicrobial therapy included Amoxicillin, Biaxin, Flagyl and Mepron. After several months the improvement was incremental but slow. She was unable to work and was concerned that she might be disabled for an extended period of time. I felt that she was doing fairly well. It would take time; she would eventually be able to return to work.

It is impossible to predict how long it will take for a particular patient to get better. Nonetheless, every time I see a patient for follow up I review the initial, presenting symptoms: which symptoms have improved and which have not. About 6 weeks ago I noted that the headaches were quite disabling and had not improved to any significant extent. The headaches had a migraine like quality. Empirically, I prescribed a migraine preventing medicine, Topomax.

When I was her last week I was surprised by her dramatic improvement. The Topamax made a huge difference. The headaches resolved, her sleep improved and virtually all the other symptoms disappeared as well. It was a rather amazing transformation. She had scheduled her return to work- full time.

In retrospect her case looks a bit different. I still believe she suffers with chronic Lyme disease, but this may not have been her main problem. Her illness was triggered by a closed head injury and a concussion. Patients can suffer with a post-concussion syndrome which can persist for many months.

Headaches which resemble migraines and all the other presenting neurological symptoms can be seen in post-concussion syndromes. I have seen many such patients over the years. They frequently experience dizziness, balance issues, visual changes, mood swings, memory loss, brain fog and even bouts of frank confusion or disorientation. All of these symptoms dovetail nicely with many of those associated with typical neuro-Lyme- and this patient's initial list of symptoms.

The connection between fibromyalgia and sleep problems has been well known for decades. Patients deprived of deep sleep, stage 4 delta sleep, all develop a fibromyalgia like syndrome after a period of several weeks, as has been experimentally shown.

The improvement in muscle symptoms could be related to the improvement in sleep that she was experiencing. Perhaps the restoration of brain function caused the marked improvement in muscle symptoms by some other mechanism.

Asymptomatic, persistent Lyme infection be transformed into an active process by another illness, usually an infectious illness. I have seen this many times. In this case I suspect that the neurological injury triggered by the concussion and the associated sleep deprivation, created an environment permitting activation of Lyme- and perhaps Babesia.

1 comments

TUESDAY, JANUARY 27, 2009

Hard to catch?

Many have characterized the IDSA and ILADS dispute with the simple dichotomy: Hard to catch easy to cure, versus easy to catch hard to cure. A snappy little sound bite.

I saw one of my delightful patients today. He is a 23 year old male with cerebral palsy. He has been quadriplegic since birth. He has minimal use of his left hand and motors around the house with an electric wheel chair. He suffers with severe cognitive impairments. He rarely leaves the house and never goes anywhere without his elderly grandmother. He lives in an apartment complex. One year ago he had several tick bites. His grandmother thought it was from the mulching of the trees around the entrance to his apartment complex. He is difficult to communicate with because of his handicaps.

Nonetheless, his care giver could easily see a change in his demeanor. He became sullen, less mobile and in general, appeared uncomfortable. His lab tests were positive for Lyme disease by CDC surveillance criteria. He was treated with two months of antibiotics and got better. Two months later he was ill again. He had malaise, low grade fevers, decreased mobility and a change once more, in his normally cheerful demeanor. After 3 additional months of antibiotic therapy he became well and he remains well to this day.

This young man lives in an apartment with his elderly grandmother. He is permanently confined to a wheel chair. For all intents and purposes, he virtually never leaves his home and he certainly never goes outside to enjoy bucolic scenery. He developed classic Lyme disease with positive CDC serology.

The disease is hard to catch???

We can deal with easy to cure another day.

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