This is a one time response.
One of my loyal patients brought in dialogue from a forum called LymeNet. I do not read forums. He was concerned about people disparaging my writing. I told him I was happy that folks were reading my stuff and discussing it. I certainly do not expect people to agree with everything I write. If they disagree with everything it is OK. As a friend of mind is fond of saying: "This is America." I welcome reasonable criticism and am not offended by it in any way. A Blog, unlike a book, is a fluid process. It reveals my thinking in real time. I have changed my mind about many things and I expect this will continue in my ongoing quest for knowledge. I perceive this to be a good thing. Lyme/TBD is a very gray area of medicine. Whereas most physicians prefer dealing with the black and white; I, for some reason, have always been attracted to the gray areas of medicine and other disciplines.
The term "pure culture" Lyme refers to patients thought to have only Lyme. It does not mean that Lyme has been cultured from a patient. I have never cultured Bb from any patient. The best I have accomplished is positive PCRs from synovial fluid and blood.
Please read dog doc's comments. I am not black and white in thinking. The point is that we treat empirically without knowing for sure what we are treating. It is very difficult, if not impossible, to prove that "Bart" patients have Bartonellosis. What we know is that there is a subset of patients who respond better to certain antibiotics. Several co-infections: Bacteria in white blood cells, motile organisms in the blood and a small tumbling organism- resembling a small parasite, have now been seen in TBD patients but remain unknowns. These organisms have been seen through a microscope at 1000 power in whole blood wet mounts by Dr. K., who has extensive experience and training in molecular biology, parasitology and microbiology.
Batonella has, and can be seen in the brain; in a couple of case reports it has proved fatal. But- there are only a few case reports. It is widespread, perhaps the most common tick and vector borne infection found in humans, and it is not generally considered to be highly pathogenic. It is far more likely, in my opinion, that most CNS syndromes in Lyme/TBD patients are do to Bb. AND- most Lyme patients with CNS symptoms respond better to Rocephin than any other drug.
This is not to say that other pathogens or coinfections do not contribute to CNS symptoms. For example, we know that HHV 6 is the most neurotrophic virus in existence. Stratton and Weldon have clearly demonstrated that CPN is a major player in MS. How then does one know with certainty that so called Bart drugs are not really targeting CPN. The point is that there is much we do not know. I think the gate theory may have validity. Lyme may be the gateway germ. It may damage the immune system in such a way that other, heretofore, benign germs, become opportunistically pathogenic. If this is the case, then the treatment of Lyme alone may frequently put these other germs back in their box.
LymeMD is just a blog. If I say controversial things it is to get people thinking; obviously that is the case. Tons of microorganisms can cross the blood brain barrier: bacteria, viruses, protozoa, fungi and who knows what else. For the most part, these are infrequent occurrences (I think). In patients with Lyme disease/neuroborrelis, Bb is generally assumed to be the culprit until proven otherwise. Admittedly, in patients with profound sweating I consider Babesia or a Babesia like organism to be a major factor. I prefer to treat for this after some Lyme therapy; I have found this approach to be more effective.
I do not rely entirely on lab tests despite rumors to the contrary. Many patients treated even with IV antibiotics are seronegative. That includes Babesia as well.
Biofilms are of unknown significance. This is not a specific feature of infection with Bb. Nearly all bacteria can form biofilms. The formation of biofilms has been best described with regards to oral cavity bacteria. These bacteria usually do not cause clinical disease unless the biofilms are disrupted by active inflammation.
The successful treatment of patients with TBD frequently requires patience and trial and error. There is no one "miracle" drug that works for everyone. I wish there was.
Some patients respond best to: Rocephin, Biaxin, Plaquenil, Doxycyline, Minocycline, Cipro/Levaquin, Rifampin, Zithromax, Cleocin, Mepron, Malarone, Amoicillin, Amoxicillin at a high dose with or without Benemid, Omnicef with or without Benemid, Ceftin, Flagyl, Tindamax and others, this is just off the top of my head. At least one patient had a spectacular response to Ivanz.
Experience? I have treated an average of 50 patients with tick borne illness per week for the past 3 years. I schedule face time with patients, 60 hours per week. As of late, I typically see 75 Lyme patients per week. Patients are referred to me on a regular basis by other well known LLMDS, especially the sickest ones. I treat several physicians and their families.
I do not claim to have the experience of Jones or Burrascano. But I am constantly in a learning and thinking mode.
Politically the focus should be on Lyme. This is where the best scientific evidence exists. People in "Lyme land" should not loose sight of this. If the politics do not change LLMDS will become a threatened species.
I am saying that LLMDS should not work within a rigid box. The correct paradigm is far from established. As noted, Dr. Burrascano has frequently changed his opinion and emphasis.
My words should never be construed as authoritative. That has never been my intent or claim. But at least I am putting food for thought on the table.
I starting writing this Blog for personal reasons. I am not computer or internet savvy. I hope this has helped straighten out some confusion generated by my comments.
Many voices on the forum sound very angry, perhaps rightfully so. However I would suggest that a more sanguine, and perhaps unified approach, would be more helpful in effecting the political change that we all desperately need.
PS: I never suggested that Rocephin kills Bartonella. Rather, I suggested that many patients diagnosed with Bartonella based strictly on clinical grounds get better with Rocephin. The implication here is that the described syndrome was the result of Bb infection, not Bart. One can conjure up many other explanations. Sometimes my comments are misunderstood and/or taken out of context.
Friday, February 27, 2009
Thursday, February 26, 2009
Ignorance is no excuse!
A troubled 43 year old woman sat across from me yesterday. She told me I was her last hope. I hate it when patients say that. She had obvious memory problems and struggled to get out her words. Sitting across from me she evinced strange, periodic jerking spasms and movements of her four limbs in a random fashion. She told me her story.
She had been well until October 2007. She lived in Southern Maryland and has spent a lot of time outdoors. It started with pains involving multiple joints, especially from the waist down. Then came the brain symptoms, hard and fast. In short order she became forgetful and confused. She continues to have trouble speaking and loosing things as her memory deteriorates. A local physician found positive tests for Lyme and Ehrlichia. She was treated with 30 days of Rocephin followed by two months of Doxycyline. She started to get better on the Rocephin but all the symptoms quickly returned when the meds were discontinued.
By August 2008 she was sicker than ever. Repeat blood work showed that the IgG Ehrlichia titer was higher. And now she tested positive for Bartonella.
Her physician prescribed Levaquin for 3 weeks and 3 months of Bicillin. Once again, she was just starting to feel better when the treatment was stopped and her symptoms returned.
Over the past 5 weeks things have taken a turn for the worst. Withing the past two weeks she has seen two infectious disease physicians. One said the patient does not have Lyme and the other said he did not know how to treat Bartonella. In the meantime she has been referred to a neurologist. She has developed progressive myoclonus- muscle jerking and increased generalized pain. Her blood pressure became dangerously high with erratic swings both up and down. She has had episodes of SVT- rapid heart beat. Her sense of balance has become diminished and she has fallen several time.
Specifically, she has had no skin nodules, stretch marks, depression, anxiety, foot pain or "depersonalization." These are signs and symptoms in LLMD literature associated with Bartonella.
She has recently lost her job, working for a group of cardiologists.
She is totally disabled.
She does admit to episodes of chills and sweats.
Her exam shows an elevated blood pressure. Her mental status is abnormal. She is forgetful with some aphasia. She had the jerking myoclonic movements as described. Sensations are abnormal, notably she has absent vibratory sense in the left foot. There is poor finger to nose accuracy or speed. The Romberg test shows her falling to the right.
Current labs: Lyme WB IgM positive 23 and 41 bands, Ehrichia chaffeenis IgG 1:1024,
Bartonella henselae IgG 1:320.
This woman clearly has three tick borne infections: Lyme, Ehrlichia and Bartonella.
Clinically, she may also have Babesia. She is very ill- an understatement.
The classic signs and symptoms attributed to Bartonella and/or BLO are absent. Bartonella is a small intracellular bacteria which may at times cause brain and central nervous system disorders. How often this occurs is unknown. Bartonella is commonly seen in the homeless, HIV- immunsuppresed patients and younger patients. Classically B. henselae has been associated with cat scratch fever, enlarged lymph nodes and "occuloglandular syndrome." There are isolated reports of meningitis and encephalitis in the medical literature.
My assumption is that the majority of her symptoms are due to Lyme rather than Bartonella. Her previous response to Rocephin and Pencillin seems to support this hypothesis. She was just started on Doxycyline, 100mg twice daily before seeing me. I recommended that she increase the dose to two capsules twice daily,
The first order of business is placing a PIC and restarting Rocephin.
Ehrlichia can be a tricky business. In is also intracellular and resides in white blood cells. Such bacteria can be notoriously difficult to eradicate.
After the initial expected "herx" the next step would be to add Rifampin. The combination of Doxy and Rifampin seems to be quite effective against Ehrlicia.
Many proponents have suggested that Rifampin is also effective against Bartonella.
It is not clear which antibiotics are most effective against Bartonella. Different drugs may be more effective depending on the particular species being treated.
Standard literature claims that Zithromax and Doxy are effective.
LLMD literature claims that Levaquin, Bactrim and Rifampin are effective. I have not seen any scientific evidence to support the efficacy of these particular agents. Based on my knowledge of microbiology, I would expect Levaquin and perhaps Rifampin to be effective.
The use of Bactrim by many LLMDS has confused me. Anecdotally, LLMDS report that it is effective against BLO. I am not sure what BLO is.
After a little research I considered the following possibility. Sulfa drugs like Bactrim have been shown to have some activity against Malaria. Rather than treating Bartonella or Lyme, I wonder if these drugs have activity against Babesia species.
Perhaps in cases where the response to Mepron or Malarone is poor or sluggish, the addition of Bactrim may provide some additional benefits.
The chills and sweats certainly suggest the possibility of a Babesia species. Alternatively, Ehrlichia can cause similar symptoms. We shall see.
This patient has been kicked around by a system which can offer her no help. To make matters worse, the system denies the existence of here illness.
For some reason, this patient in particular, has hardened my resolve to continue treating patients with Lyme and TBD. I am confident that with proper treatment she will have a full recovery. Many such patients are critically ill with a disease which remains unknown to all but a few practicing physicians. Without correct treatment, she and numerous others like her would certainly face progressive disability and/or death.
She had been well until October 2007. She lived in Southern Maryland and has spent a lot of time outdoors. It started with pains involving multiple joints, especially from the waist down. Then came the brain symptoms, hard and fast. In short order she became forgetful and confused. She continues to have trouble speaking and loosing things as her memory deteriorates. A local physician found positive tests for Lyme and Ehrlichia. She was treated with 30 days of Rocephin followed by two months of Doxycyline. She started to get better on the Rocephin but all the symptoms quickly returned when the meds were discontinued.
By August 2008 she was sicker than ever. Repeat blood work showed that the IgG Ehrlichia titer was higher. And now she tested positive for Bartonella.
Her physician prescribed Levaquin for 3 weeks and 3 months of Bicillin. Once again, she was just starting to feel better when the treatment was stopped and her symptoms returned.
Over the past 5 weeks things have taken a turn for the worst. Withing the past two weeks she has seen two infectious disease physicians. One said the patient does not have Lyme and the other said he did not know how to treat Bartonella. In the meantime she has been referred to a neurologist. She has developed progressive myoclonus- muscle jerking and increased generalized pain. Her blood pressure became dangerously high with erratic swings both up and down. She has had episodes of SVT- rapid heart beat. Her sense of balance has become diminished and she has fallen several time.
Specifically, she has had no skin nodules, stretch marks, depression, anxiety, foot pain or "depersonalization." These are signs and symptoms in LLMD literature associated with Bartonella.
She has recently lost her job, working for a group of cardiologists.
She is totally disabled.
She does admit to episodes of chills and sweats.
Her exam shows an elevated blood pressure. Her mental status is abnormal. She is forgetful with some aphasia. She had the jerking myoclonic movements as described. Sensations are abnormal, notably she has absent vibratory sense in the left foot. There is poor finger to nose accuracy or speed. The Romberg test shows her falling to the right.
Current labs: Lyme WB IgM positive 23 and 41 bands, Ehrichia chaffeenis IgG 1:1024,
Bartonella henselae IgG 1:320.
This woman clearly has three tick borne infections: Lyme, Ehrlichia and Bartonella.
Clinically, she may also have Babesia. She is very ill- an understatement.
The classic signs and symptoms attributed to Bartonella and/or BLO are absent. Bartonella is a small intracellular bacteria which may at times cause brain and central nervous system disorders. How often this occurs is unknown. Bartonella is commonly seen in the homeless, HIV- immunsuppresed patients and younger patients. Classically B. henselae has been associated with cat scratch fever, enlarged lymph nodes and "occuloglandular syndrome." There are isolated reports of meningitis and encephalitis in the medical literature.
My assumption is that the majority of her symptoms are due to Lyme rather than Bartonella. Her previous response to Rocephin and Pencillin seems to support this hypothesis. She was just started on Doxycyline, 100mg twice daily before seeing me. I recommended that she increase the dose to two capsules twice daily,
The first order of business is placing a PIC and restarting Rocephin.
Ehrlichia can be a tricky business. In is also intracellular and resides in white blood cells. Such bacteria can be notoriously difficult to eradicate.
After the initial expected "herx" the next step would be to add Rifampin. The combination of Doxy and Rifampin seems to be quite effective against Ehrlicia.
Many proponents have suggested that Rifampin is also effective against Bartonella.
It is not clear which antibiotics are most effective against Bartonella. Different drugs may be more effective depending on the particular species being treated.
Standard literature claims that Zithromax and Doxy are effective.
LLMD literature claims that Levaquin, Bactrim and Rifampin are effective. I have not seen any scientific evidence to support the efficacy of these particular agents. Based on my knowledge of microbiology, I would expect Levaquin and perhaps Rifampin to be effective.
The use of Bactrim by many LLMDS has confused me. Anecdotally, LLMDS report that it is effective against BLO. I am not sure what BLO is.
After a little research I considered the following possibility. Sulfa drugs like Bactrim have been shown to have some activity against Malaria. Rather than treating Bartonella or Lyme, I wonder if these drugs have activity against Babesia species.
Perhaps in cases where the response to Mepron or Malarone is poor or sluggish, the addition of Bactrim may provide some additional benefits.
The chills and sweats certainly suggest the possibility of a Babesia species. Alternatively, Ehrlichia can cause similar symptoms. We shall see.
This patient has been kicked around by a system which can offer her no help. To make matters worse, the system denies the existence of here illness.
For some reason, this patient in particular, has hardened my resolve to continue treating patients with Lyme and TBD. I am confident that with proper treatment she will have a full recovery. Many such patients are critically ill with a disease which remains unknown to all but a few practicing physicians. Without correct treatment, she and numerous others like her would certainly face progressive disability and/or death.
Tuesday, February 24, 2009
Guerrilla antibiotics
A 35 year old Vietnamese gentleman was well until September, 2008. At that time he developed burning sensations in his upper extremities. He developed a chronic sore throat. Muscle and joint pains started coming and going in a diffuse distribution. He developed fatigue with some brain fog, then intermittent night sweats. Additionally he has experienced dyspnea- shortness of breath at night and occasional palpitations. There has been progressive weakness affecting both arms and the left leg. The pains, especially around his shoulders and neck have been disabling at times.
He went to his primary care physician who ran a plethora of tests. Finally a Lyme test was done. It was positive. He was referred to ID.
He saw the Nurse Practitioner. She prescribed Doxycyline for 3 weeks. After two weeks he developed a rash on his face. The Doxy was stopped and he was given Amoxil for an additional 3 weeks. Even though symptoms persisted the NP would prescribe no further antibiotics.
He went to a neurologist who found nothing amiss.
I saw him today for the first time. I examined him.
He had obvious weakness of the left arm. His deep tendon reflexes were asymmetrical, increased in the left versus right upper extremity. An obvious decrease of sensation to pin prick in a stocking/glove pattern was present.
He has lived in this country for 25 years but his accent is a bit thick.
I wanted to get a clear history about his use of antibiotics. He told me the Amoxil had been prescribed at a dose of 500 mg 3X daily. I asked if he only took it for the three weeks? He was quiet for a moment as if he were trying to size me up. Quietly, sheepishly, he confided: He had been taking Amoxil from Vietnam- continuously.
Not trusting or believing in his health care providers, this patient like many others went underground to acquire antibiotics. These are the guerrilla warfare tactics of Lyme disease I allude to in the title of the post.
He recently visited the ID again. He showed me those labs. The ELISA was positive at 1.3. The IgM was positive with 23 and 41 bands. The IgG showed 23 and 66 bands. This of course is "CDC positive" and according to the CDC model indicates acute infection. The possibility of another bite, a new infection and co-infection was apparently not considered.
The Lyme disease is gone quipped the nurse practitioner. The patient was sent on his way.
He was worried that the self prescribed Amoxil had caused harm, that perhaps it had made his germs resistant.
I told him that this was unlikely. Rather, he had been under treated.
I thought: "Underground for antibiotics: A sad state of affairs."
He went to his primary care physician who ran a plethora of tests. Finally a Lyme test was done. It was positive. He was referred to ID.
He saw the Nurse Practitioner. She prescribed Doxycyline for 3 weeks. After two weeks he developed a rash on his face. The Doxy was stopped and he was given Amoxil for an additional 3 weeks. Even though symptoms persisted the NP would prescribe no further antibiotics.
He went to a neurologist who found nothing amiss.
I saw him today for the first time. I examined him.
He had obvious weakness of the left arm. His deep tendon reflexes were asymmetrical, increased in the left versus right upper extremity. An obvious decrease of sensation to pin prick in a stocking/glove pattern was present.
He has lived in this country for 25 years but his accent is a bit thick.
I wanted to get a clear history about his use of antibiotics. He told me the Amoxil had been prescribed at a dose of 500 mg 3X daily. I asked if he only took it for the three weeks? He was quiet for a moment as if he were trying to size me up. Quietly, sheepishly, he confided: He had been taking Amoxil from Vietnam- continuously.
Not trusting or believing in his health care providers, this patient like many others went underground to acquire antibiotics. These are the guerrilla warfare tactics of Lyme disease I allude to in the title of the post.
He recently visited the ID again. He showed me those labs. The ELISA was positive at 1.3. The IgM was positive with 23 and 41 bands. The IgG showed 23 and 66 bands. This of course is "CDC positive" and according to the CDC model indicates acute infection. The possibility of another bite, a new infection and co-infection was apparently not considered.
The Lyme disease is gone quipped the nurse practitioner. The patient was sent on his way.
He was worried that the self prescribed Amoxil had caused harm, that perhaps it had made his germs resistant.
I told him that this was unlikely. Rather, he had been under treated.
I thought: "Underground for antibiotics: A sad state of affairs."
Monday, February 23, 2009
Today- I cried
It is a busy morning. Running behind- a grabbed the next chart and headed for the exam room. The encounter sheet noted- new patient, "LYME." I entered the room and immediately noticed three people. There was a healthy appearing middle aged man, a healthy looking somewhat younger woman and a very elderly and sick appearing woman in a wheel chair.
"So who is the patient?" I inquired, secretly hoping it was not the lady in the wheel chair; but I knew otherwise.
I looked at my new patient. She looked ancient, weary and barely alive. She was incredibly thin, skin hanging on bones with a few strands of muscle. She couldn't speak or move. Her head fell to her chest; she was only able to keep her head in an upright position with help from the other woman, her caregiver. And yet, she managed a smile. I looked again at her virgin chart. She was 51 years only; the youthful gentleman was her husband.
"Well, I stammered, let me hear your story."
Her husband had only a thin folder with a few sheaves of paper. There was a clear history of tick bites. Her hair dresser once found a small tick embedded in her scalp. She had been an active outdoor person with dogs and horses.
And she had been perfectly well until some time in 2005.
They were country people. Her husband, a blue collar worker, was not the greatest historian; He told me what he could remember. It started with weakness in the right leg. A foot drop developed. The weakness spread to the other lower extremity associated with severe stiffness. Her condition gradually worsened, the weakness and stiffness spread and now affected her entire body. She had incapacitating anxiety and profound fatigue. Her speech became garbled, progressively, over the past year and one half. She was wheel chair bound for the last year and a half. Severe dysphagia- trouble swallowing, led to her dramatic weight loss. She was continent and maintained mental clarity, I was told.
In April 2006 she went to the Hershey Medical Center. She was told she had ALS. Nothing more was offered.
In July 2006, a friend suggested a Lyme test. It was positive. Her husband showed me an IgeneX IgM report, the IgG was missing. It showed positive bands in the 23,31,34,40 and 93 positions. It was noted to be CDC positive.
They live in rural Pennsylvania. No LLMDS there. They found a local doctor who tried to help. He ordered IV Rocephin for 3 months. She improved! Her strength steadily improved. Then, the Rocephin was stopped and she resumed the inexorable down hill slide. She was on oral Doxy and getting worse.
I examined her in her chair. I could not weigh her. She appeared moribund. She was unable to speak. I noted fasiculations in her arms. Her extremities were weak although she could move her arms some. The arms were loose with normal tone. Her legs were extremely stiff with lead pipe immobility. Her reflexes were normal. Sensation was hard to test.
ALS was high on the list of differential diagnoses. The textbooks list Lyme disease as a cause motor neuron disease- ALS; no one was paying any attention. why? If she got better with Rocephin why wasn't it continued? This seems like common sense. No?
Other diagnoses crossed my mind: Anxiety and stiffness.It could be an autoimmune disorder called Stiff Person's syndrome. Then I wondered if she had a primary muscle disorder. I ordered some tests and a consultation with a neurologists expert in muscle disorders. ALS was likely. But damn it- Lyme is known to cause it! And- she had started to respond to treatment; then the rug was yanked from under her.
The woman looked deathly ill. There was not much left to work with. I wished she had seen me or someone else a year ago.
I was afraid. I was afraid to treat her, but even more afraid to not treat her.
I ordered a PIC and Rocephin, with much trepidation, knowing that treatment can at times accelerate the progression of Lyme/ALS.
A profound wave of sadness came over me. I quietly shed a tear for this poor woman.
Then I became angry, as I considered the absurd politics of this disease.
But there were more patients to see; I went into the next exam room.
"So who is the patient?" I inquired, secretly hoping it was not the lady in the wheel chair; but I knew otherwise.
I looked at my new patient. She looked ancient, weary and barely alive. She was incredibly thin, skin hanging on bones with a few strands of muscle. She couldn't speak or move. Her head fell to her chest; she was only able to keep her head in an upright position with help from the other woman, her caregiver. And yet, she managed a smile. I looked again at her virgin chart. She was 51 years only; the youthful gentleman was her husband.
"Well, I stammered, let me hear your story."
Her husband had only a thin folder with a few sheaves of paper. There was a clear history of tick bites. Her hair dresser once found a small tick embedded in her scalp. She had been an active outdoor person with dogs and horses.
And she had been perfectly well until some time in 2005.
They were country people. Her husband, a blue collar worker, was not the greatest historian; He told me what he could remember. It started with weakness in the right leg. A foot drop developed. The weakness spread to the other lower extremity associated with severe stiffness. Her condition gradually worsened, the weakness and stiffness spread and now affected her entire body. She had incapacitating anxiety and profound fatigue. Her speech became garbled, progressively, over the past year and one half. She was wheel chair bound for the last year and a half. Severe dysphagia- trouble swallowing, led to her dramatic weight loss. She was continent and maintained mental clarity, I was told.
In April 2006 she went to the Hershey Medical Center. She was told she had ALS. Nothing more was offered.
In July 2006, a friend suggested a Lyme test. It was positive. Her husband showed me an IgeneX IgM report, the IgG was missing. It showed positive bands in the 23,31,34,40 and 93 positions. It was noted to be CDC positive.
They live in rural Pennsylvania. No LLMDS there. They found a local doctor who tried to help. He ordered IV Rocephin for 3 months. She improved! Her strength steadily improved. Then, the Rocephin was stopped and she resumed the inexorable down hill slide. She was on oral Doxy and getting worse.
I examined her in her chair. I could not weigh her. She appeared moribund. She was unable to speak. I noted fasiculations in her arms. Her extremities were weak although she could move her arms some. The arms were loose with normal tone. Her legs were extremely stiff with lead pipe immobility. Her reflexes were normal. Sensation was hard to test.
ALS was high on the list of differential diagnoses. The textbooks list Lyme disease as a cause motor neuron disease- ALS; no one was paying any attention. why? If she got better with Rocephin why wasn't it continued? This seems like common sense. No?
Other diagnoses crossed my mind: Anxiety and stiffness.It could be an autoimmune disorder called Stiff Person's syndrome. Then I wondered if she had a primary muscle disorder. I ordered some tests and a consultation with a neurologists expert in muscle disorders. ALS was likely. But damn it- Lyme is known to cause it! And- she had started to respond to treatment; then the rug was yanked from under her.
The woman looked deathly ill. There was not much left to work with. I wished she had seen me or someone else a year ago.
I was afraid. I was afraid to treat her, but even more afraid to not treat her.
I ordered a PIC and Rocephin, with much trepidation, knowing that treatment can at times accelerate the progression of Lyme/ALS.
A profound wave of sadness came over me. I quietly shed a tear for this poor woman.
Then I became angry, as I considered the absurd politics of this disease.
But there were more patients to see; I went into the next exam room.
Thursday, February 19, 2009
Under the train
The post entitled "Routine Physical," is the essence of my quandary. I have been clearly instructed from legal quarters: DON'T DO LYME- JUST DO REGULAR FAMILY MEDICINE. How do I do that? To paraphrase Plato: Once you have seen the light it is impossible to return to the cave. The old me, the pre-Lyme me, would have thought: "Of course he has brain fog, he abuses alcohol and marijuana, what does he expect." "Depression- sure- common, connected to substance abuse." Aches and pains- It is just a somatic manifestation of his depression and other issues." He would have been treated with Prozac and Motrin; and sent for extensive substance abuse counseling and rehab, for which he would have likely been non compliant. He would likely have never returned to my office and been "lost to follow up." This is the world I am told I must to go back to. For God's sake, this patient had 12 of 13 standard bands positive on a Lyme Western Blot WHICH I OTHERWISE WOULD NOT HAVE ORDERED. NOW HIS ENTIRE LIFE HAS BEEN TURNED AROUND BECAUSE HE HAS BEEN TREATED FOR THIS NON EXISTENT LYME DISEASE!
The Lyme community is busy spitting hairs while the system prepares to throw yet another LLMD under the train- AND then how many more?. Folks if this is important, and of course it is, PLEASE unite over the big issues. News Flash: A single payer system utilizing "Evidence Based Medicine" will be a disaster for the Lyme community if the ILASDS guidelines are not put into the mainstream. This will only happen through political change.
I started this blog for personal reasons. It was a therapeutic way of venting my frustrations. I began writing about odds and ends, patient stories and my understanding of the science as it has evolved. Perhaps the Blog took on a life I had not considered. Often I say things that challenge the status quo and force people to think. That is the point. We are all learning. It is a work in progress.
The debated about CAM must come to an end- at least here. That is another battle for another day which should be fought somewhere else. Yesterday, a patient with neuro- degenerative disease asked me if IV glutathione would be of help. I told him I didn't know but that perhaps he should explore this avenue. I certainly had nothing to offer from my bag of tricks.
I personally am not CAM. I was trained as an allopathic physician and that is the model within which I practice. Unfortunately or not, depending upon your point of view, a mainstream acceptance of chronic Lyme can only come from an allopathic perspective. In terms of the pecking order of "the system," CAM physicians are at the lowest rung on the totem pole.
I DO NOT DISPARAGE CAM PRACTITIONERS. They frequently are very valuable. I think it would be an insult to well trained CAM doctors if a physician like myself were to casually enter into the fray. These physicians, many of whom are quite accomplished, have spent many years honing their trade. Patients should make informed choices and discover what works for them.
Medicine sometimes seem like a religion. Perhaps in many ways it is. To the extent it is possible, Lyme medicine must be fact driven if we are to win this war. The discussion should not be: "So you don't believe in Bartonella." Rather the discussion should be" "The Bartonella hypothesis is interesting, what evidence do we have to support it?"
Having given this a great deal of thought, if I were to be told by a governing body of physicians, as may happen in the near future, that I have to follow the IDSA guidelines, then I could no longer in good faith be able to practice the medicine that I love. I couldn't live with myself if I were compelled to throw this young man described in the vignette above "under the train." I already have enough trouble sleeping some nights.
The Lyme community is busy spitting hairs while the system prepares to throw yet another LLMD under the train- AND then how many more?. Folks if this is important, and of course it is, PLEASE unite over the big issues. News Flash: A single payer system utilizing "Evidence Based Medicine" will be a disaster for the Lyme community if the ILASDS guidelines are not put into the mainstream. This will only happen through political change.
I started this blog for personal reasons. It was a therapeutic way of venting my frustrations. I began writing about odds and ends, patient stories and my understanding of the science as it has evolved. Perhaps the Blog took on a life I had not considered. Often I say things that challenge the status quo and force people to think. That is the point. We are all learning. It is a work in progress.
The debated about CAM must come to an end- at least here. That is another battle for another day which should be fought somewhere else. Yesterday, a patient with neuro- degenerative disease asked me if IV glutathione would be of help. I told him I didn't know but that perhaps he should explore this avenue. I certainly had nothing to offer from my bag of tricks.
I personally am not CAM. I was trained as an allopathic physician and that is the model within which I practice. Unfortunately or not, depending upon your point of view, a mainstream acceptance of chronic Lyme can only come from an allopathic perspective. In terms of the pecking order of "the system," CAM physicians are at the lowest rung on the totem pole.
I DO NOT DISPARAGE CAM PRACTITIONERS. They frequently are very valuable. I think it would be an insult to well trained CAM doctors if a physician like myself were to casually enter into the fray. These physicians, many of whom are quite accomplished, have spent many years honing their trade. Patients should make informed choices and discover what works for them.
Medicine sometimes seem like a religion. Perhaps in many ways it is. To the extent it is possible, Lyme medicine must be fact driven if we are to win this war. The discussion should not be: "So you don't believe in Bartonella." Rather the discussion should be" "The Bartonella hypothesis is interesting, what evidence do we have to support it?"
Having given this a great deal of thought, if I were to be told by a governing body of physicians, as may happen in the near future, that I have to follow the IDSA guidelines, then I could no longer in good faith be able to practice the medicine that I love. I couldn't live with myself if I were compelled to throw this young man described in the vignette above "under the train." I already have enough trouble sleeping some nights.
Wednesday, February 18, 2009
Another case: A somewhat different description of what transpired
A 30 year old female was first seen about 15 months ago. She believed she had been exposed to Lyme disease on a Maryland farm. She had a year of progressive symptoms before our first visit. She developed: joint pain, muscle pain, memory loss, numbness and tingling and sweats. She had been a patient at Kaiser and had previously tested negative for Lyme twice. Labcorp found 41 bands in the IgM and IgG positions. She was treated with: Amoxicillin, Biaxin and Plaquenil. After three months low dose Flagyl was added. An IgeneX test showed the dramatic IgM response with 11/14 bands positive after three months of treatment. Over time, her antibiotics were modified. Amoxicillin and Biaxin were changed to Ceftin and Doxycyline. She had a quick positive response to treatment, but her symptoms waxed an waned over a period of months despite continuous antibiotic therapy. After one year she reported about a 70% overall improvement. At that point Zithromax and Rifampin were used in place of the Doxyclyine. The Ceftin was continued. She showed some incremental improvement. About three months ago it was decided to target the Babesia syndrome. She was placed on Malarone and a low dose of Clindamycin.
Things quickly turned around. At our last visit, one week ago she was almost 100% improved. This is a very grateful patient who feel she might have become disabled without the help I provided for her.
Points: I think the Rifampin was of some help. I don't know why. The current model would suggest it was more active against a Bartonella organism. I would not make this claim.
The Malarone and Clindamyin was effective. The current model would suggest this treatment was active against a persistent form of Babesia. This is theory. There is no laboratory evidence to confirm this. It has been pointed out that Malaron and Mepron may also have activity against cystic forms of Lyme. There are other potential explanations for the efficacy of this therapy. Of course, she may indeed have had chronic Babesiosis. I have found, in my practice, that Malarone works just as well as Mepron. It is more palatable and much more cost effective. I do not push the dose beyond two tablets per day. I have found that the timing of its application is the critical factor. It is more effective after a prolonged course of more typical Lyme therapy. The addition of Artemesin may have some additional benefits, but I not yet convinced of this.
I believe the presence of a WB 31 band is good evidence that the disease was longstanding. It does not matter if it presents as an IgM or IgG band.
Things quickly turned around. At our last visit, one week ago she was almost 100% improved. This is a very grateful patient who feel she might have become disabled without the help I provided for her.
Points: I think the Rifampin was of some help. I don't know why. The current model would suggest it was more active against a Bartonella organism. I would not make this claim.
The Malarone and Clindamyin was effective. The current model would suggest this treatment was active against a persistent form of Babesia. This is theory. There is no laboratory evidence to confirm this. It has been pointed out that Malaron and Mepron may also have activity against cystic forms of Lyme. There are other potential explanations for the efficacy of this therapy. Of course, she may indeed have had chronic Babesiosis. I have found, in my practice, that Malarone works just as well as Mepron. It is more palatable and much more cost effective. I do not push the dose beyond two tablets per day. I have found that the timing of its application is the critical factor. It is more effective after a prolonged course of more typical Lyme therapy. The addition of Artemesin may have some additional benefits, but I not yet convinced of this.
I believe the presence of a WB 31 band is good evidence that the disease was longstanding. It does not matter if it presents as an IgM or IgG band.
Routine physical
A 22 year old man, a new patient, scheduled an appointment for a physical, a general check up. This was supposed to be a health maintenance exam. I asked a series of questions and kept uncovering positive responses. He had suffered with fatigue, depression and anxiety for several years. He also complained of memory loss which he attributed to marijuana use. I further elicited complaints of joint pain and night sweats. Then it was uncovered that he in fact had a history of tick bite and rash 6 years previous to our encounter which had been treated with Doxycyline.(He didn't complete the course). He admittedly abused alcohol and tobacco, in addition to marijuana. There was a positive family history of anxiety and depression.
His physical exam showed multiple neurological abnormalities, including a positive Babinsky sign in addition to the usual changes in sensation.
His labs were impressive. All 10 IgG Lyme WB bands were present. Two IgM bands, 23 and 41 were present.
After only 2 weeks of therapy with Minocin and Biaxin his improvement has been astounding. The joint pain is better- almost gone. His energy is better, the fatigue almost gone. His memory has improved and the sweats are gone. His depression and anxiety are also markedly improved. He has stopped drinking and cut down his use of marijuana to a minimum. He continues to smoke cigarettes.
Perhaps, he has responded so quickly because of his youth. There is another possibility. Perhaps his dramatic IgG response is a marker for an improved immune response.
One thing is clear. The presence of IgG antibodies does not mean that he is clear of Lyme, as has been suggested by some. The diagnosis rests of an assessment of symptoms and signs.
Furthermore, the same would be said in the event that IgM bands were completely absent as well.
His physical exam showed multiple neurological abnormalities, including a positive Babinsky sign in addition to the usual changes in sensation.
His labs were impressive. All 10 IgG Lyme WB bands were present. Two IgM bands, 23 and 41 were present.
After only 2 weeks of therapy with Minocin and Biaxin his improvement has been astounding. The joint pain is better- almost gone. His energy is better, the fatigue almost gone. His memory has improved and the sweats are gone. His depression and anxiety are also markedly improved. He has stopped drinking and cut down his use of marijuana to a minimum. He continues to smoke cigarettes.
Perhaps, he has responded so quickly because of his youth. There is another possibility. Perhaps his dramatic IgG response is a marker for an improved immune response.
One thing is clear. The presence of IgG antibodies does not mean that he is clear of Lyme, as has been suggested by some. The diagnosis rests of an assessment of symptoms and signs.
Furthermore, the same would be said in the event that IgM bands were completely absent as well.
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