One patient with chronic Lyme called NIH hoping for acceptance into a new study. More research. Great. At least someone with gravitas thinks the jury is still out. The questionnaire sounds promising: tick bite, EM rash, joint problems, facial palsy, fever or chill, muscle pain, stiff neck, headache, heart problems, swollen lymph nodes, shooting pains in the hands/feet, cognitive problems, trouble finding words. This is the telephone screening questionnaire.
Patient's Western blot pattern: IgMs, 23,41,18,58,66 and 93. IgGs, only 41,64 and 68 A bust. Entry into the study requires a positive ELISA and 5/10 specific IgG bands. Rare findings.
Patients with long-standing Lyme disease have variable antibody responses. New IgM reactions can develop in late Lyme disease. IgM antibodies correlate with active infection, not IgG antibodies which tend to be protective.
Patients with strong persistent IgG bands may on average be healthier than other groups.
My patient complains she is very sick while a neighbor with 8/10 bands is very well.
A prospective study of antibody patterns seen in acute Lyme patients with persistent symptoms over time could help settle the issue and be relatively easy to do.
The unproven "CDC criteria" proposed by Dressler one weekend in 1994 has remained the unchallenged law of the land.
This same patient selection criteria has been used over and over again in NIH sponsored studies.
A definitions of insanity is repeating the same thing over and over expecting a different result.
Sunday, January 22, 2012
Friday, January 20, 2012
No box
In 2002 I didn't know much about Lyme. My patient suffered with a paralyzed diaphragm. He was in misery with every breath: only one lung could expand. A trillion specialist said he was a medical mystery. Idiopathic. Once I heard Gabe Mirkin say: Idiopathic means the doctor is an idiot and the patient is pathological. True in this case. My notes show I actually thought of Lyme even back then. He became one of those troubling patient, anathema to every primary clinic. So many complaints! fatigue, depression - at times suicidal, brain fog, memory loss, total body pain - the list went on. I was empathetic and used all the tools in my box - band aids. Somewhere along the trail I became "Lyme literate." Antibiotics helped a little. The diaphragm still wouldn't move and overall improvements were modest. In 2008 if finally sent off a blood sample to Clongen.Positive Babesia PCR. The PCR was positive!
In short, Mepron turned his life around. He could breath. Everything got better. He was even happy. Unfortunately, every time Mepron was stopped he crashed. Nothing else worked.
Recently,his employer suddenly cancelled Cigna. He was now pushed into Kaiser. He was told that his "Cadillac plan" had to go.
Today he came in just to lament.
He tells me the new Kaiser doctor mumbled something about about hindsight which didn't make any sense. The doctor told him there was no way he was going to prescribe Mepron for something "they" didn't believe in.
The doctor said he didn't know what a PCR is, and there is no box to check on the lab requisition to order a PCR. No Box. I had to repeat this over and over again to make sure I got it right.
The patient doesn't know what to do. He can't afford $1100.00 a month for the drug.
No box.
In short, Mepron turned his life around. He could breath. Everything got better. He was even happy. Unfortunately, every time Mepron was stopped he crashed. Nothing else worked.
Recently,his employer suddenly cancelled Cigna. He was now pushed into Kaiser. He was told that his "Cadillac plan" had to go.
Today he came in just to lament.
He tells me the new Kaiser doctor mumbled something about about hindsight which didn't make any sense. The doctor told him there was no way he was going to prescribe Mepron for something "they" didn't believe in.
The doctor said he didn't know what a PCR is, and there is no box to check on the lab requisition to order a PCR. No Box. I had to repeat this over and over again to make sure I got it right.
The patient doesn't know what to do. He can't afford $1100.00 a month for the drug.
No box.
Thursday, January 19, 2012
Babesia: confirmed case
An unexpected page last Sunday. Call.... about...., 1-800 number, blood parasites. Strange message. I called the number back and ask for the name displayed on my beeper. The caller was a hematology tech from one of the "mill" labs. She had just seen parasites in the red blood cells of one of my patients: ring forms with some extracellular forms. She told me she needed to go over the slide with her supervisor in the morning for "speciation." We were both very excited.
The Maryland state health department states there has been only one confirmed case of Babesia in the state. Hence, all the ID docs dismiss all positive Babesia serologies as "false positives."
One of my patients made a ranting youtube video after consulting two ID docs at Hopkins. He is very sick and showed them: positive serology for B. duncan, a positive FISH test and a positive PCR test. One of the docs didn't know what B duncani is. He was told: " We don't use that lab." (IgeneX) "What lab do you use," he inquired. Response: " Different labs - we just don't use that one."
The health officials says PCR (false positives, experimental) isn't good enough to confirm a case. You need microscopic confirmation.
Here it was, the second confirmed case in the state of Maryland I thought. (Incentally, the same mill lab posted positive serology for B. microti for this patient).
But somewhere in the back of my mind it knew it was too good to be true. The supervisor from the lab in NC told me: " well, its only in a few cells, not enough for me to call it, will report it as a possible parasite, unable to "speciate."
"I am not looking for a species identification, just a genus."
Point ignored: "We see a lot of plasmodium in our lab."
"Well they are easy to see," I told him, "infect a lot of red blood cells. The point with Babesia is only a tiny percent of RBCs are infected - and the ring form is a classic presentation!" I got the impression he didn't know what I was talking about. "How many Babesia do you see in your lab?"
"About one per year, mostly from New England."
He suggested that I order a PCR to confirm the diagnosis if I suspected it. Fat chance.
He agreed that the tech did a great job and was sorry he couldn't help.
The Maryland state health department states there has been only one confirmed case of Babesia in the state. Hence, all the ID docs dismiss all positive Babesia serologies as "false positives."
One of my patients made a ranting youtube video after consulting two ID docs at Hopkins. He is very sick and showed them: positive serology for B. duncan, a positive FISH test and a positive PCR test. One of the docs didn't know what B duncani is. He was told: " We don't use that lab." (IgeneX) "What lab do you use," he inquired. Response: " Different labs - we just don't use that one."
The health officials says PCR (false positives, experimental) isn't good enough to confirm a case. You need microscopic confirmation.
Here it was, the second confirmed case in the state of Maryland I thought. (Incentally, the same mill lab posted positive serology for B. microti for this patient).
But somewhere in the back of my mind it knew it was too good to be true. The supervisor from the lab in NC told me: " well, its only in a few cells, not enough for me to call it, will report it as a possible parasite, unable to "speciate."
"I am not looking for a species identification, just a genus."
Point ignored: "We see a lot of plasmodium in our lab."
"Well they are easy to see," I told him, "infect a lot of red blood cells. The point with Babesia is only a tiny percent of RBCs are infected - and the ring form is a classic presentation!" I got the impression he didn't know what I was talking about. "How many Babesia do you see in your lab?"
"About one per year, mostly from New England."
He suggested that I order a PCR to confirm the diagnosis if I suspected it. Fat chance.
He agreed that the tech did a great job and was sorry he couldn't help.
Friday, January 13, 2012
Continuous or pulsed
Two patients yesterday with neuropsychiatric symptoms responsive to amoxicillin. One patient claimed that Moxatag, a long acting drug, was more effective than traditional short acting amoxicillin. The other adamantly claimed the opposite.
The question about continuous therapy versus pulse therapy is controversial and unsettled.
At least one(Lyme)study showed that continuous exposure to drug, even at lower concentration was more effective(had better killing kinetics).
Test tube study.
Clinical support: Long acting Bicillin (penicillin) works very well despite low blood/tissue concentration of drug.
Amoxicillin reaches a peak blood level without hours and is rapidly excreted with preferential penetration to some tissues. In-vivo(you), tissue concentration may be higher than shown with in-vitro(test tubes). Don't know.
IV antibiotics with long half lifes - Rocephin and Zithromax can be very effective.
Oral antibiotics behave differntly in the body than IV for a number of reasons.
I currently prescribe amoxicillin as 500 mg, two twice daily. Perhaps one four times per day would work better. There are practical limitations: better adsorption on an empty stomach, scheduling doses.
My impression: continuous better than pulsed.
The question about continuous therapy versus pulse therapy is controversial and unsettled.
At least one(Lyme)study showed that continuous exposure to drug, even at lower concentration was more effective(had better killing kinetics).
Test tube study.
Clinical support: Long acting Bicillin (penicillin) works very well despite low blood/tissue concentration of drug.
Amoxicillin reaches a peak blood level without hours and is rapidly excreted with preferential penetration to some tissues. In-vivo(you), tissue concentration may be higher than shown with in-vitro(test tubes). Don't know.
IV antibiotics with long half lifes - Rocephin and Zithromax can be very effective.
Oral antibiotics behave differntly in the body than IV for a number of reasons.
I currently prescribe amoxicillin as 500 mg, two twice daily. Perhaps one four times per day would work better. There are practical limitations: better adsorption on an empty stomach, scheduling doses.
My impression: continuous better than pulsed.
Thursday, January 12, 2012
Third opinion
Here is a patient who states he has been sick his entire life - seeing a parade of doctors for as long as he can remember. Childhood was tough and he was maladjusted. Diagnosed with: learning disabilities, ADD, depression and Asberger's syndrome at varying times. Always sickly, missing a lot of school. Abdominal pain, fatigue, fevers, colds, flus, headaches and other ailments. Now treated for depression and sleep apnea he feels he is not thinking as clearly for the last year. He notes: increased anxiety, trouble finding words, worsening depression, more ADD symptoms. He also admits to drinking too much and using marijuana about three days a week. Things have not gone well at work or at home recently.
He recalls removing a tick from his dog a few years ago - not sure what kind. He has some vague pains in his joints and muscles, occasional pins and needles in his hands and feet, some twitching around his eyes and occasional tremors. He grew up in Arizona in the 70s, moved here 10 years ago. And then someone said: get a Lyme test.
An LLMD sent extensive tests to IgeneX. Everything was negative except the Lyme Western Blot. He had IgM bands: 18,31,34. He saw an LLMD who diagnosed Lyme. He was treated with herbs and a month of antibiotics. It didn't help. He saw an infectious disease doctor who ordered a Western Blot through Labcorp. Only a 23 IgM showed up. He was told he did not have Lyme disease.
He now wants a third opinion - great.
A Western Blot from Stony Brook showed IgM bands 41 and 93.
His exam showed a mild postural tremor, otherwise normal.
OK, so maybe you are thinking he got Lyme by vertical transmission from his mother. Seems pretty unlikely in Arizona in the 60s.
The labs are positive for Lyme, right. All three labs found highly specific bands; they just didn't agree. Not even a little. Labcorp, 23 band, OspC. IgeneX 31,34, Osp A and B. Stony Brook 93 band, flagellum protein, only found in Lyme.
He didn't Herx.
I ordered a course of high dose antibiotics and asked the patient to return for a Lyme PCR in two weeks.
I am discouraged about Western Blots. All three labs use different kits and different procedures. I have noticed certain biases. Labcorp gets a lot of 23s. Stony Brook gets a lot of 93s. And IgeneX finds more 31s.
People can interpret the tests according to their own biases. The IDSA is wrong but all test results need to be interpreted with caution.
This is a frustrating case. The next test will likely be negative.
My answer: Lets fix the other stuff and then see what remains. He needs to be checked for: B12, Vit D, Celiac and a few others. Perhaps I can be persuaded to check: DHEAS, Histamine, Copper, Zinc, TIBC/ Ferritin, TSH and thyroid antibodies with new guidelines and screen for heavy metals.
Sorting out the chaff from the grain is not going to be easy.
I would be doing him a disservice if I treat for Lyme now.
Acupuncture and traditional Chinese herbal therapy would be much better than what I have to offer - along side Western psychiatric help.
He recalls removing a tick from his dog a few years ago - not sure what kind. He has some vague pains in his joints and muscles, occasional pins and needles in his hands and feet, some twitching around his eyes and occasional tremors. He grew up in Arizona in the 70s, moved here 10 years ago. And then someone said: get a Lyme test.
An LLMD sent extensive tests to IgeneX. Everything was negative except the Lyme Western Blot. He had IgM bands: 18,31,34. He saw an LLMD who diagnosed Lyme. He was treated with herbs and a month of antibiotics. It didn't help. He saw an infectious disease doctor who ordered a Western Blot through Labcorp. Only a 23 IgM showed up. He was told he did not have Lyme disease.
He now wants a third opinion - great.
A Western Blot from Stony Brook showed IgM bands 41 and 93.
His exam showed a mild postural tremor, otherwise normal.
OK, so maybe you are thinking he got Lyme by vertical transmission from his mother. Seems pretty unlikely in Arizona in the 60s.
The labs are positive for Lyme, right. All three labs found highly specific bands; they just didn't agree. Not even a little. Labcorp, 23 band, OspC. IgeneX 31,34, Osp A and B. Stony Brook 93 band, flagellum protein, only found in Lyme.
He didn't Herx.
I ordered a course of high dose antibiotics and asked the patient to return for a Lyme PCR in two weeks.
I am discouraged about Western Blots. All three labs use different kits and different procedures. I have noticed certain biases. Labcorp gets a lot of 23s. Stony Brook gets a lot of 93s. And IgeneX finds more 31s.
People can interpret the tests according to their own biases. The IDSA is wrong but all test results need to be interpreted with caution.
This is a frustrating case. The next test will likely be negative.
My answer: Lets fix the other stuff and then see what remains. He needs to be checked for: B12, Vit D, Celiac and a few others. Perhaps I can be persuaded to check: DHEAS, Histamine, Copper, Zinc, TIBC/ Ferritin, TSH and thyroid antibodies with new guidelines and screen for heavy metals.
Sorting out the chaff from the grain is not going to be easy.
I would be doing him a disservice if I treat for Lyme now.
Acupuncture and traditional Chinese herbal therapy would be much better than what I have to offer - along side Western psychiatric help.