Lyme Western Blots can be quite different.
Some labs make their own kits while other labs buy commercially prepared kits.
The "mill labs" Labcorp and Quest simply report whether or not bands are present or not. Other labs grade Blot/band responses.
Specialty labs typically grade bands on a scale of 1 to 4 and may also use the indeterminate designation. These results are manually read by the person performing the test.
The dark line or blot seen on the patient strip (blot) are visually compared to the control strip. The ratings are subjective and may very from one observer to the next.
The human eye unfortunately is not all that reliable.
I recently looked at some blot results with Dr. K. He has used both manual blot and computerized blot technologies.
He offers state of the art computerized WB results.
Here the computer digitizes the the images seen on the Western Blot strip. The computer counts the pixels and compares the intensity of the patient test reaction with that of the control. To my eye, patient bands may appear equal to the control reaction but may be read negative by the computer.
He uses the "Mayo Clinic" methods. Bands are reported as positive only if the pixelated blot/band is 90% of the control. The report indicates a percent reading as it relates to images present on the control strip. For example, an IgG 41 band might be reported as 300%, this means it has 3X as many pixels as the control band as read by the computer software.
This technology which should be more accurate in fact tends to show less positive bands than manual WB results. This is because the human eye tends to see bands as being more intense than perhaps they actually are. We are biased to see positive bands. However-- since WB have always been performed manually one could question the validity of the computer generated reports.
A strip for one of my patient's recently showed a 34 band with a reading of 85%. Although this is 5% less than the Mayo Clinic criteria, it is pretty clear to me that this is a positive band.
When I look at strips I frequently see weak bands at key locations which are reported as negative. This is based on the set-point of the software. Truly "negative" bands(in my opinion) show no reactivity at all- the strip is blank. Any bands which are visible, even if they are a low percent of the control need to be considered, especially when they are present at critical locations. When physicians are presented with the actual strips it provides more information. Information is always a good thing.
IgeneX makes it own kits and interprets the results manually.
Clongen uses commercial kits, which are CDC approved( I don't know if this is good or bad) and offers both manual and computerized interpretations if requested.
The mill labs only report if bands are present. They do not indicate their cut-off points or methodology.
When WBs are sent to three labs at the same time different results are obtained quite frequently.
As you can see the world of Lyme Western Blots is murky like everything else Lyme; so--what else is new?
Friday, June 5, 2009
Wednesday, June 3, 2009
Interstital Cystitis and Lyme- preliminay report
I would like to comment briefly about this disorder and its potential relationship to Lyme disease. I have been treating at least one patient who has reported an excellent response to treatment. Willie burdorferf, the microbiologist who discovered the Lyme spirochete reported in 1988 that Borrelia burdorferi, the bacteria which bears his name was found consistently in the urinary bladders of mice.
A great deal of research has supported the notion that Bb widely disseminates into many organs. The co-existence of urinary tract disorders in patients with Lyme disease is well documented. There is evidence that Lyme has been found in stomach, colon and gallbladder biopsy samples. To the best of My knowledge no studies have been undertaken to examine bladder tissue samples for the presence of Lyme. At least one study has demonstrated positive Lyme PCR in genital secretions. This may represent contamination from the urinary tract. PCR tests for genitourinary STDs, Chlamydia and gonorrhea, from urine samples have existed for years(this demonstrates that urine contamination from other sources is frequently present). Positive Lyme PCRs have been obtained from urine specimens. Overall, a body of evidence suggests that Lyme can- may reside in the urinary bladder.
Interstitial cystitis is a fairly common disorder. It occurs more commonly in women. It's name is derived from the minimal pathological changes seen in bladder biopsies.
It is associated with symptoms which at times are crippling. Such symptoms may include: pain in various locations, frequency, pelvic pain, bloating and other related symptoms. IC(interstitial cystitis) patients are thought to have a higher incidence of fibromyalgia and chronic fatigue syndrome.
The standard thinking is that the cause is unknown; although it is said not be due to infection and not respond to antibiotics.
These symptoms overlap with several other disorders: chronic pelvic pain of unknown cause, chronic prostatis or prostatosis in men and chronic urethral or para-urethral syndrome seen in women.
Standard urinary tract infections are caused by bacteria that normally live in the colon. Examples include: E. coli and enterococcus. These are classic gram negative and gram positive bacteria. They can be easily grown in standard culture medium. standard antibiotics only treat gram negative bacteria- such as Bactrim.
Lyme is very difficult to grow in culture media, even by expert hands. And- if it is found only in the bladder wall, such cultures will be useless.
Other L-form bacteria have also been implicated in these syndromes, including: Chlamydia and Mycoplasm species. These too are very difficult to culture.
Physicians typically prescribe antibiotics for 7 to 14 days for urinary tract infections. Experience with Lyme disease shows that short courses of antibiotics are not effective. Only in prostate infections have longer courses of antibiotics been used. Physicians are aware of the prostate-blood barrier and bacterial sequestration within the gland. Antibiotic courses up to 90 days have been used- with some success and frequent relapse.
My patient has established IC. She also tests positive for LD by Western Blot and has a variety of other symptom commonly associated with Lyme disease. She had been miserable for two years with a horrendous quality of life. Experts in IC had been unable to help her.
She has been treated with the usual Lyme antibiotic combinations. The combination of Biaxin with Plaquenil was incredibly effective for the IC symptoms and life altering.
My thoughts are that IC and related conditions are caused by L-form infection of perhaps Bb and other L-form bacteria. Biaxin is not an antibiotic used for urinary tract infections in the typical sense. Minocin has also shown some promise. Cipro has been used for both Lyme and urinary tract infections, but I have noticed a very significant "bladder herx" when patients have been treated with it. Perhaps it can be tolerated later in the course of therapy.
I have seen evidence that IC and related syndromes respond to antibiotics. Long term antibiotics are required- patients need to realized that symptoms will not improve over-night.
Lyme disease should be considered in these patients. This is a work in progress. I cannot claim a lot of experience here. However- my patient has reported that other IC patients, with whom she communicates, have also experienced improvement with the combination of Biaxin and Plaquenil.
A great deal of research has supported the notion that Bb widely disseminates into many organs. The co-existence of urinary tract disorders in patients with Lyme disease is well documented. There is evidence that Lyme has been found in stomach, colon and gallbladder biopsy samples. To the best of My knowledge no studies have been undertaken to examine bladder tissue samples for the presence of Lyme. At least one study has demonstrated positive Lyme PCR in genital secretions. This may represent contamination from the urinary tract. PCR tests for genitourinary STDs, Chlamydia and gonorrhea, from urine samples have existed for years(this demonstrates that urine contamination from other sources is frequently present). Positive Lyme PCRs have been obtained from urine specimens. Overall, a body of evidence suggests that Lyme can- may reside in the urinary bladder.
Interstitial cystitis is a fairly common disorder. It occurs more commonly in women. It's name is derived from the minimal pathological changes seen in bladder biopsies.
It is associated with symptoms which at times are crippling. Such symptoms may include: pain in various locations, frequency, pelvic pain, bloating and other related symptoms. IC(interstitial cystitis) patients are thought to have a higher incidence of fibromyalgia and chronic fatigue syndrome.
The standard thinking is that the cause is unknown; although it is said not be due to infection and not respond to antibiotics.
These symptoms overlap with several other disorders: chronic pelvic pain of unknown cause, chronic prostatis or prostatosis in men and chronic urethral or para-urethral syndrome seen in women.
Standard urinary tract infections are caused by bacteria that normally live in the colon. Examples include: E. coli and enterococcus. These are classic gram negative and gram positive bacteria. They can be easily grown in standard culture medium. standard antibiotics only treat gram negative bacteria- such as Bactrim.
Lyme is very difficult to grow in culture media, even by expert hands. And- if it is found only in the bladder wall, such cultures will be useless.
Other L-form bacteria have also been implicated in these syndromes, including: Chlamydia and Mycoplasm species. These too are very difficult to culture.
Physicians typically prescribe antibiotics for 7 to 14 days for urinary tract infections. Experience with Lyme disease shows that short courses of antibiotics are not effective. Only in prostate infections have longer courses of antibiotics been used. Physicians are aware of the prostate-blood barrier and bacterial sequestration within the gland. Antibiotic courses up to 90 days have been used- with some success and frequent relapse.
My patient has established IC. She also tests positive for LD by Western Blot and has a variety of other symptom commonly associated with Lyme disease. She had been miserable for two years with a horrendous quality of life. Experts in IC had been unable to help her.
She has been treated with the usual Lyme antibiotic combinations. The combination of Biaxin with Plaquenil was incredibly effective for the IC symptoms and life altering.
My thoughts are that IC and related conditions are caused by L-form infection of perhaps Bb and other L-form bacteria. Biaxin is not an antibiotic used for urinary tract infections in the typical sense. Minocin has also shown some promise. Cipro has been used for both Lyme and urinary tract infections, but I have noticed a very significant "bladder herx" when patients have been treated with it. Perhaps it can be tolerated later in the course of therapy.
I have seen evidence that IC and related syndromes respond to antibiotics. Long term antibiotics are required- patients need to realized that symptoms will not improve over-night.
Lyme disease should be considered in these patients. This is a work in progress. I cannot claim a lot of experience here. However- my patient has reported that other IC patients, with whom she communicates, have also experienced improvement with the combination of Biaxin and Plaquenil.
Tuesday, June 2, 2009
Life after Rocephin
What happens after you stop Rocephin? From the Fallon study we know that all cognitive gains achieved after a 10 week course of Rocephin are quickly lost.
Many patients find themselves in the post-Rocephin boat. I will briefly describe the clinical course of one of those patients whom I saw today for a follow up visit. This 57 year old female in many ways is a typical patient with neuroborreliosis. After an acute illness with Lyme disease 3 years ago she subsequently developed progressive cognitive deficits. She experienced memory loss- both short term and long term, difficulty with concentration, poor attention and slow processing. Along with this she had bouts of confusion and disorientation. I picked her up as a new patient 3 months ago. She had been on 4 months of Rocephin and experienced a terrific clinical response. She was afraid of stopping the Rocephin. She had regained at least 70% of lost cognitive functioning. I told her that she could not stay on Rocephin forever and that in my experience Rocephin gains can be sustained with oral antibiotics once the plug is pulled. To reassure her I also let her know that Rocephin could always be restarted.
Here is my thinking. The primary antibiotic which was so effective, Rocephin or ceftriaxone is a third generation cephalosporin. The oral Lyme medicine which most closely resembles Rocephin- a third generation cephalosporin is Omnicef; so I chose this drug. In my experience Amoxicillin would probably have been equally effective.
To boost the blood concentration, and hopefully the effects of Omnicef, I added Benemid or probenicid. This drugs inhibits renal excretion of penicillins and cephalosporins- increasing the blood/brain concentration. In addition I thought that adding additional-synergistic antibiotics, known to pass the blood brain barrier and improve cognition made sense. So I added Minocin and then Tindamax to the regimen.
Now three months off Rocephin she has continued to improve each month. Her level of cognitive functioning is up to 80 to 90 percent of normal.
There have been no published scientific studies to support these findings. However, my impression at this time is that 1) It may be necessary to use Rocephin for significant cognitive dysfunction and that 2) those improvements can be sustained- if not augmented with the use of appropriate oral antibiotics. The duration of therapy cannot be predicted ahead of time; but an open ended approach makes sense as the patient improves. And beyond this some sort of maintenance therapy may be required.
Many patients find themselves in the post-Rocephin boat. I will briefly describe the clinical course of one of those patients whom I saw today for a follow up visit. This 57 year old female in many ways is a typical patient with neuroborreliosis. After an acute illness with Lyme disease 3 years ago she subsequently developed progressive cognitive deficits. She experienced memory loss- both short term and long term, difficulty with concentration, poor attention and slow processing. Along with this she had bouts of confusion and disorientation. I picked her up as a new patient 3 months ago. She had been on 4 months of Rocephin and experienced a terrific clinical response. She was afraid of stopping the Rocephin. She had regained at least 70% of lost cognitive functioning. I told her that she could not stay on Rocephin forever and that in my experience Rocephin gains can be sustained with oral antibiotics once the plug is pulled. To reassure her I also let her know that Rocephin could always be restarted.
Here is my thinking. The primary antibiotic which was so effective, Rocephin or ceftriaxone is a third generation cephalosporin. The oral Lyme medicine which most closely resembles Rocephin- a third generation cephalosporin is Omnicef; so I chose this drug. In my experience Amoxicillin would probably have been equally effective.
To boost the blood concentration, and hopefully the effects of Omnicef, I added Benemid or probenicid. This drugs inhibits renal excretion of penicillins and cephalosporins- increasing the blood/brain concentration. In addition I thought that adding additional-synergistic antibiotics, known to pass the blood brain barrier and improve cognition made sense. So I added Minocin and then Tindamax to the regimen.
Now three months off Rocephin she has continued to improve each month. Her level of cognitive functioning is up to 80 to 90 percent of normal.
There have been no published scientific studies to support these findings. However, my impression at this time is that 1) It may be necessary to use Rocephin for significant cognitive dysfunction and that 2) those improvements can be sustained- if not augmented with the use of appropriate oral antibiotics. The duration of therapy cannot be predicted ahead of time; but an open ended approach makes sense as the patient improves. And beyond this some sort of maintenance therapy may be required.
Monday, June 1, 2009
The Lyme Western Blot revisited
I get a lot of questions about Western Blot test results: Do I have Lyme?
The disease cannot be diagnosed by a blood test. The Western Blot test is one tool used to demonstrate that a patient has been exposed to Borrelia burdorferi. Period.
Testing for Lyme antibodies is much more complicated than testing for most other germs. Antibodies directed against most bacteria and viruses are determined by ELISA or IFA technology, and that it all that is generally required. The Western Blot was supposed to be a confirmation test used to validate a positive ELISA in the case of Lyme disease. Many of us who treat Lyme have found this to be inaccurate. The only other disease that I am aware of that uses this two tier approach is HIV. Some patients who test positive for HIV by the ELISA method are negative by the Western Blot method. These patients are false positive; they do not have HIV. Some patients who test positive by the WB method are ELISA negative and also do not have HIV. For the HIV test to provide accurate result the ELISA must be done first before the WB.
What is true for HIV testing is not true for Lyme testing. Nonetheless, many physicians cling steadfastly to this incorrect line of thinking.
A test is considered sensitive when it picks up all, or nearly all positive cases. Frequently, tests with high sensitivity also include some false positives. When this occurs the test is considered sensitive but not specific. A test is considered specific when a positive result is very accurate and can be relied upon for a diagnosis.
For many reasons, which have been discussed elsewhere, it has been shown that the current Lyme ELISA test is not sensitive. In other words it has many false negatives. This is why most physicians who treat a lot of Lyme disease skip the ELISA test and go right to the WB test.
It has been well established that seronegative(no antibodies) Lyme disease exists. One could debate how frequently this occurs, but in my experience it is quite frequent. This knowledge influences the interpretation of WB bands as will be discussed.
The spirochete has a lot of targets for antibody production. Areas on a germ which elicit the production of antibodies are called antigens. Antigenic regions on the bacteria are associated with the production of unique antibodies which target that specific antigenic region of the bacteria. In the WB test these are seen as bands which appear on the blot.
What is CDC positive? People are very confused about this. The CDC criteria for evaluating Lyme WB bands was created in 1994. Its purpose was epidemiological surveillance. It was never intended for use as or validated for use as a diagnostic tool. Those of us who look at Western Blots do our best to interpret the results based on our knowledge of what the bands represent. Since many patients are seronegative, the diagnosis of Lyme may be suggested when very few bands appear.
What is the IgeneX criteria? IgeneX has developed internal criteria which it reports as evidence of exposure to Bb. Basically if a patient shows two specific bands(in the same antibody class) the test is reported as positive.
The most commonly seen band is the 41 band. Most consider it sensitive but feel that it lacks specificity. I think the jury is still out on this one. It is not yet clear to me whether or not the presence of only this band can be used as supporting evidence of exposure to Bb. I don't think there are as many false positives as has been suggested by other authors. Both the CDC and IgeneX consider this band to be quite specific.
There are no standardized criteria for a positive Lyme Western Blot. This means that your doctor many interpret the results quite differently from other doctors. This includes LLMDS.
What we do know is that some of the bands are not very specific for Bb. I, like IgeneX tend to discount non-specific bands when viewing a report. When highly specific bands appear it is unlikely that their presence represents anything other than Bb exposure. Based on this thinking, many doctors may feel comfortable concluding that the test for Lyme is positive if few of these specific markers are identified on the WB test.
The very specific bands include: 93(region) 41,39,34,31 and 23. Some authors include the 18 band.
Whereas IgeneX will only call the test positive if the two specific WB bands are found in the same subclass of antibodies, IgG or IgM, this designation seems arbitrary and is of less importance to me. For example, If a patient has an IgG 93 band and IgM 23 band I feel comfortable that the patient result shows evidence of Lyme exposure.
In fact, the presence of a single, highly specific band(with the exception of the 41 band) may be taken as evidence that the patient has been exposed to Bb - a positive result. Again, it must be emphasized that there are no universally agreed upon criteria for the assessment of a positive or negative WB. Doctors who treat Lyme may all interpret these results through the lens of their own beliefs and experience and report differing conclusions.
The question then(at least regarding WB tests) is not doctor, do I have Lyme?
The question is, doctor is my Lyme test positive. First off, patients frequently ask: am I CDC positive. I then have to go through the process of explaining why this is not important. Ultimately I can only present patients with my interpretation of the results. This can end up being a bit unsatisfactory for the patient. Unfortunately, as is the case with most things "Lyme," answers to questions are frequently fuzzy. In the example given above, the 93 IgG and the 23 IgM are present. I would interpret this as positive result. There is no text or standard resource which patients can use to validate my interpretation. Ultimately it may come down to the doctor - patient relationship, and a patients comfort level with their doctor's interpretation. Patients should be aware of these complexities when requesting results from their doctor.
This is where the art of medicine trumps the science of medicine once more.
The disease cannot be diagnosed by a blood test. The Western Blot test is one tool used to demonstrate that a patient has been exposed to Borrelia burdorferi. Period.
Testing for Lyme antibodies is much more complicated than testing for most other germs. Antibodies directed against most bacteria and viruses are determined by ELISA or IFA technology, and that it all that is generally required. The Western Blot was supposed to be a confirmation test used to validate a positive ELISA in the case of Lyme disease. Many of us who treat Lyme have found this to be inaccurate. The only other disease that I am aware of that uses this two tier approach is HIV. Some patients who test positive for HIV by the ELISA method are negative by the Western Blot method. These patients are false positive; they do not have HIV. Some patients who test positive by the WB method are ELISA negative and also do not have HIV. For the HIV test to provide accurate result the ELISA must be done first before the WB.
What is true for HIV testing is not true for Lyme testing. Nonetheless, many physicians cling steadfastly to this incorrect line of thinking.
A test is considered sensitive when it picks up all, or nearly all positive cases. Frequently, tests with high sensitivity also include some false positives. When this occurs the test is considered sensitive but not specific. A test is considered specific when a positive result is very accurate and can be relied upon for a diagnosis.
For many reasons, which have been discussed elsewhere, it has been shown that the current Lyme ELISA test is not sensitive. In other words it has many false negatives. This is why most physicians who treat a lot of Lyme disease skip the ELISA test and go right to the WB test.
It has been well established that seronegative(no antibodies) Lyme disease exists. One could debate how frequently this occurs, but in my experience it is quite frequent. This knowledge influences the interpretation of WB bands as will be discussed.
The spirochete has a lot of targets for antibody production. Areas on a germ which elicit the production of antibodies are called antigens. Antigenic regions on the bacteria are associated with the production of unique antibodies which target that specific antigenic region of the bacteria. In the WB test these are seen as bands which appear on the blot.
What is CDC positive? People are very confused about this. The CDC criteria for evaluating Lyme WB bands was created in 1994. Its purpose was epidemiological surveillance. It was never intended for use as or validated for use as a diagnostic tool. Those of us who look at Western Blots do our best to interpret the results based on our knowledge of what the bands represent. Since many patients are seronegative, the diagnosis of Lyme may be suggested when very few bands appear.
What is the IgeneX criteria? IgeneX has developed internal criteria which it reports as evidence of exposure to Bb. Basically if a patient shows two specific bands(in the same antibody class) the test is reported as positive.
The most commonly seen band is the 41 band. Most consider it sensitive but feel that it lacks specificity. I think the jury is still out on this one. It is not yet clear to me whether or not the presence of only this band can be used as supporting evidence of exposure to Bb. I don't think there are as many false positives as has been suggested by other authors. Both the CDC and IgeneX consider this band to be quite specific.
There are no standardized criteria for a positive Lyme Western Blot. This means that your doctor many interpret the results quite differently from other doctors. This includes LLMDS.
What we do know is that some of the bands are not very specific for Bb. I, like IgeneX tend to discount non-specific bands when viewing a report. When highly specific bands appear it is unlikely that their presence represents anything other than Bb exposure. Based on this thinking, many doctors may feel comfortable concluding that the test for Lyme is positive if few of these specific markers are identified on the WB test.
The very specific bands include: 93(region) 41,39,34,31 and 23. Some authors include the 18 band.
Whereas IgeneX will only call the test positive if the two specific WB bands are found in the same subclass of antibodies, IgG or IgM, this designation seems arbitrary and is of less importance to me. For example, If a patient has an IgG 93 band and IgM 23 band I feel comfortable that the patient result shows evidence of Lyme exposure.
In fact, the presence of a single, highly specific band(with the exception of the 41 band) may be taken as evidence that the patient has been exposed to Bb - a positive result. Again, it must be emphasized that there are no universally agreed upon criteria for the assessment of a positive or negative WB. Doctors who treat Lyme may all interpret these results through the lens of their own beliefs and experience and report differing conclusions.
The question then(at least regarding WB tests) is not doctor, do I have Lyme?
The question is, doctor is my Lyme test positive. First off, patients frequently ask: am I CDC positive. I then have to go through the process of explaining why this is not important. Ultimately I can only present patients with my interpretation of the results. This can end up being a bit unsatisfactory for the patient. Unfortunately, as is the case with most things "Lyme," answers to questions are frequently fuzzy. In the example given above, the 93 IgG and the 23 IgM are present. I would interpret this as positive result. There is no text or standard resource which patients can use to validate my interpretation. Ultimately it may come down to the doctor - patient relationship, and a patients comfort level with their doctor's interpretation. Patients should be aware of these complexities when requesting results from their doctor.
This is where the art of medicine trumps the science of medicine once more.
Thursday, May 28, 2009
Knee, Assymptomatic Babesia, Autoimmune neuropathy, Tindamax
Another young woman came into my office with swollen knees. The first doctor she saw, an IDSA doc had no trouble making the diagnosis since Her Lyme ELIZA was positive and she had 13/13 Lyme Western Blot bands present. The ID doctor presented her with 2 options. She could take a 30 day course of Rocephin or she could go on low dose Doxycyline. It was sort of left up to the patient. One has to ponder how these 2 options are interchangeable. Rocephin, a cell wall inhibitor kills only Bb in the spirochete form. Doxy, a protein synthesis inhibitor kills Lyme in the spirochete and the L-form. It always troubles me that the "experts" are unaware of these basic facts. From my perspective it makes more sense to use two antibiotics which can synergistically attack the spirochete and L-form simultaneously. The patient has acute, active synovitis with swollen, inflamed joints. In chronic Lyme arthritis it has been shown that L-forms in the synovial lining are the problem. In acute Lyme arthritis It appears spirochetes are the culprit since such patients typically respond well to only IV Rocephin. In this case IV Rocephin is a reasonable treatment choice. Oral therapy with something like Amoxil and Doxy is also a reasonable option.(There seems to be some controversy about the combination of Amox and Doxy. They are thought to have an adverse interaction. I do not think this is the case. One can use Amox and Biaxin or Ceftin and Doxy if one prefers). The ID docs, as I am oft told, "don't believe in co-infections." This I do not get. I re-tested her. She was positive for Babesia duncani as well. She has no symptoms of Babesiosis.
After 4 weeks of oral combination antibiotic therapy, she came in today about 50% improved. After weighing the options, we decided to go to IV Rocephin for 30 days. Then I looked at the Babesia issue: She is young. She has no symptoms of systemic Lyme disease. She only has knee involvement. Her immune system may be functioning well, at least her CD57 level is normal. In this case I decided to treat Babesia by standard-text book recommendations. I ordered Mepron and Zithromax for only 21 days. Perhaps her immune system could truly eliminate the Babesia but I thought it would be better to treat-prophlactically. After all, chronic Babesiosis when it does occur can be a beast.
I decided to do a little exam of the nervous system. I continue to find that nearly every patient with Lyme disease has some peripheral neuropathy. As with most patients, there was a little stocking/glove loss of pin-prick sensation and a little decrement in vibratory sensation in the feet.
I am now fairly certain that these findings are due to a Lyme induced autoimmune process. Usually the autoimmune process is minor, but it is something that I have learned to keep a close eye one. It can worsen due to Bb infection but it can also worsen as a result of Lyme therapy. I look carefully for symptoms of progressive numbness, tingling and weakness. I examine for a worsening sensory exam. And when I find that previously existent deep tendon reflexes vanish I am particularly concerned.
When I see an increased in autoimmune neuropathy I quickly back off therapy.
I have wondered if some antibiotics have a tendency to cause more autoimmune reactions than others. This is an observation; I cannot back it up with any data.
I have observed that these reactions seem to occur more frequently when Minocin is used early in the course of therapy. I don' think Doxy does it. It seems less common with Amoxil, Rocephin, Biaxin and Zithromax.
So for what it is worth I now avoid Minocin as a first line agent.
On a final note- I am increasingly impressed with the effectiveness of Tindamax.
For example, when a patient responds rapidly to the combination of Amoxil and Biaxin, adding Tindamax a month or two later frequently makes a huge difference.
After 4 weeks of oral combination antibiotic therapy, she came in today about 50% improved. After weighing the options, we decided to go to IV Rocephin for 30 days. Then I looked at the Babesia issue: She is young. She has no symptoms of systemic Lyme disease. She only has knee involvement. Her immune system may be functioning well, at least her CD57 level is normal. In this case I decided to treat Babesia by standard-text book recommendations. I ordered Mepron and Zithromax for only 21 days. Perhaps her immune system could truly eliminate the Babesia but I thought it would be better to treat-prophlactically. After all, chronic Babesiosis when it does occur can be a beast.
I decided to do a little exam of the nervous system. I continue to find that nearly every patient with Lyme disease has some peripheral neuropathy. As with most patients, there was a little stocking/glove loss of pin-prick sensation and a little decrement in vibratory sensation in the feet.
I am now fairly certain that these findings are due to a Lyme induced autoimmune process. Usually the autoimmune process is minor, but it is something that I have learned to keep a close eye one. It can worsen due to Bb infection but it can also worsen as a result of Lyme therapy. I look carefully for symptoms of progressive numbness, tingling and weakness. I examine for a worsening sensory exam. And when I find that previously existent deep tendon reflexes vanish I am particularly concerned.
When I see an increased in autoimmune neuropathy I quickly back off therapy.
I have wondered if some antibiotics have a tendency to cause more autoimmune reactions than others. This is an observation; I cannot back it up with any data.
I have observed that these reactions seem to occur more frequently when Minocin is used early in the course of therapy. I don' think Doxy does it. It seems less common with Amoxil, Rocephin, Biaxin and Zithromax.
So for what it is worth I now avoid Minocin as a first line agent.
On a final note- I am increasingly impressed with the effectiveness of Tindamax.
For example, when a patient responds rapidly to the combination of Amoxil and Biaxin, adding Tindamax a month or two later frequently makes a huge difference.
Thursday, May 21, 2009
Lyme, CHF, Rhabdomyolysis and Crohn's
A 59 year old female visited me for an evaluation for Lyme disease visited me 9 months ago. She had a past medical history of Crohn's disease and celiac disease. She also had a history of congestive heart failure, resolved, 10 years prior to our first meeting. The cause of the CHF had never been determined. In addition, she had a severe history of muscle disease related to the cholesterol medicine Lipitor 6 years back. The lipitor had caused a severe break down of muscle tissue. The disorder is called rhabdomyolysis; this was associated with acute renal failure which has resolved. She reported a history of prednisone use for 18 months for her bowel disease. A previous physician had diagnosed fibromyalgia. At the time of our visit this once high functioning professional was disabled.
Her complaints included: nausea, fatigue, back and neck pain, blurred vision, diffuse body pains, sensitivity to sound and light, diffuse joint pains, pins and needles, rashes, fatigue, palpitations, sweats and severe cognitive issues. Her cognitive problems included poor focus, slow cognitive processing, short term memory loss, word retrieval problems and bouts of confusion and disorientation.
Her physical exam showed multiple abnormalities involving the nervous system. These included changes in cranial nerves, sensory nerves and upper motor neurons.
Her initial lab tests showed: mild anemia, a Lyme C6 peptide index of 0.27 and a single positive Bb WB band IgG 41. The results were otherwise unremarkable.
The controversies about Lyme disease were discussed with the patient. She was given informed consent. She wanted treatment without any further defining laboratory tests.
She has been on a program of typical oral Lyme medications. These have included: Zithro, Mepron, Amoxil, Minocin, Biaxin, Tindamax and Rifampin.
In her particular case Rifampin has been particularly helpful for reasons that are not clear to me. In general this is consistent with my experience that different antimicrobials work better with individual patients.
To date her improvement has been dramatic. The symptoms which had previously been attributed to Crohn's disease are completely absent. Her muscle and joint pains are nearly gone. She does admit to very slight joint pain at times and sensitivity of her skin. Her energy level is almost normal. All cognitive problems have resolved. The palpitations are gone. The sweats are gone. She is functionally normally and now returning to work in her professional capacity.
Comments: 1) Cardimyopathy- the undiagnosed heart failure could be caused by Lyme carditis. 2) Lyme can cause symptoms of inflammatory bowels disease or cause exacerbations. In this case Lyme therapy has for the time being caused a remission of Crohn's disease. 3) This is the most controversial point: Lyme has been demonstrated to exist in muscle tissues and causes myositis. It has been my observation that some patients who develop muscle pain related to statins(cholesterol medications) can later tolerate the drugs when Lyme has been treated. The reasoning here is that it is the double insult to the muscles of Lyme and the drug that causes the symptoms. When one factor is removed(Lyme) the drug becomes tolerable. Given this patient's history I would never recommend that she try taking this class of medication again. She tolerates Welchol well, which as has been pointed out, also frequently provides benefits to patients treated for Lyme disease.
Her complaints included: nausea, fatigue, back and neck pain, blurred vision, diffuse body pains, sensitivity to sound and light, diffuse joint pains, pins and needles, rashes, fatigue, palpitations, sweats and severe cognitive issues. Her cognitive problems included poor focus, slow cognitive processing, short term memory loss, word retrieval problems and bouts of confusion and disorientation.
Her physical exam showed multiple abnormalities involving the nervous system. These included changes in cranial nerves, sensory nerves and upper motor neurons.
Her initial lab tests showed: mild anemia, a Lyme C6 peptide index of 0.27 and a single positive Bb WB band IgG 41. The results were otherwise unremarkable.
The controversies about Lyme disease were discussed with the patient. She was given informed consent. She wanted treatment without any further defining laboratory tests.
She has been on a program of typical oral Lyme medications. These have included: Zithro, Mepron, Amoxil, Minocin, Biaxin, Tindamax and Rifampin.
In her particular case Rifampin has been particularly helpful for reasons that are not clear to me. In general this is consistent with my experience that different antimicrobials work better with individual patients.
To date her improvement has been dramatic. The symptoms which had previously been attributed to Crohn's disease are completely absent. Her muscle and joint pains are nearly gone. She does admit to very slight joint pain at times and sensitivity of her skin. Her energy level is almost normal. All cognitive problems have resolved. The palpitations are gone. The sweats are gone. She is functionally normally and now returning to work in her professional capacity.
Comments: 1) Cardimyopathy- the undiagnosed heart failure could be caused by Lyme carditis. 2) Lyme can cause symptoms of inflammatory bowels disease or cause exacerbations. In this case Lyme therapy has for the time being caused a remission of Crohn's disease. 3) This is the most controversial point: Lyme has been demonstrated to exist in muscle tissues and causes myositis. It has been my observation that some patients who develop muscle pain related to statins(cholesterol medications) can later tolerate the drugs when Lyme has been treated. The reasoning here is that it is the double insult to the muscles of Lyme and the drug that causes the symptoms. When one factor is removed(Lyme) the drug becomes tolerable. Given this patient's history I would never recommend that she try taking this class of medication again. She tolerates Welchol well, which as has been pointed out, also frequently provides benefits to patients treated for Lyme disease.
Thursday, May 14, 2009
Wellness, Illness and Lyme
Wellness and Illness exist on a continuum. We all have a balance sheet of sorts which relates to our status on this scale. On the wellness side we have: favorable genes and environment, happiness, laughter, low stress, good mental health and self esteem, fulfillment of career-relationships-family, positive nutrition, exercise, healthy sexuality, music, dance, intellectual curiosity, reading, writing, hobbies and other things which make us well rounded. A person on this side of the health continuum feels well and energetic, sleeps well and is devoid of pain. (I think you also need a surplus of money and time).
On the other side of the balance sheet we have pretty much the opposite of all these positives. You can go down the list. The negative side of the balance sheet also tends to include many chronic illness and negative factors; some are of our own making and others are just the result of bad luck. These include: unfavorable socioeconomic status, unfortunate genes and environmental factors, smoking, drinking, substance abuse, an abusive diet, migraine or headache disorders, heart disease, diabetes and other endocrine disorders, asthma and allergic disorders, gastrointestinal disorders, autoimmune disorders, pain syndromes, malignant disorders and much more. Those living of this side of the spectrum experience life quite differently. Every day may be a struggle fraught with an array of challenges and discomforts. These folks are in pain. They sleep poorly- have mental health issues, and experience subjective and objective signs of a lack of good health or illness.
There are always unexpected factors and influences, such as illness, accidents or personal tragedy, which can precipitously change one's status. An individual experiencing all the benefits associated with column A can quickly find themselves experiencing a predominant column B status.
Sometimes it appears humans are incredibly resilient while at other times it appears we are delicate and tenuous. Of course most of do not live in either of the extremes of the continuum described. We reside somewhere in the middle of two,(I hope). Those of us closer to the the health side (column A) may at times be be better equipped to handle a new negative challenge than those who resides predominantly in column B. But this is not always the case: Enter the unpredictable world of infectious diseases.
Someone ranking high on the health side, may have a better immune system and fend off a typical case of pneumonia with relative ease. Influenza may be another matter. It turns out that the H1N1 strain of flu, last seen 91 years ago, caused the highest mortality and morbidity in those who would appear to be the healthiest, namely 20 to 40 year olds. In fact it was their excellent health that likely led to the disastrous outcomes. Their perfectly tuned immune responses actually became their Achilles heel. Hyper-responsiveness of the immune system led to an outpouring of pro-inflammatory cytokines. These are the chemical mediators which direct the activity of our immune system. Readers of this BLOG should be familiar with cytokines; these are the molecules responsible for Herxheimer reactions so frequently experienced with Lyme therapy. The overactive responses, called a cytokine storm, could be thought of as a Herx reaction on steroids, and could overwhelm the infected host and lead to organ failure.
Other insults to our health are much less predictable; I am thinking of Lyme disease.
Today I saw a woman who cannot comprehend how Lyme disease could have made her so ill. After all, she has done everything to promote the best possible health. She is committed to exercise, yoga, a vegetarian balanced diet, healthy relations, laughter and all the other positives noted in the column associated with good health. In fact her professional life centers around teaching others these concepts. The germ still prevailed. She has neuroborreliosis associated with significant cognitive deficits. Her brain MRI and SPECT scans confirm this. Against her innate judgment she has accepted the reality of a long and intensive treatment course of antimicrobial therapy.
Health and illness can exist on a balance beam. Sometimes all it takes is one factor, like Lyme disease, to act as the hair that broke the camels back. The weight of that hair varies for each individual.
On the other side of the balance sheet we have pretty much the opposite of all these positives. You can go down the list. The negative side of the balance sheet also tends to include many chronic illness and negative factors; some are of our own making and others are just the result of bad luck. These include: unfavorable socioeconomic status, unfortunate genes and environmental factors, smoking, drinking, substance abuse, an abusive diet, migraine or headache disorders, heart disease, diabetes and other endocrine disorders, asthma and allergic disorders, gastrointestinal disorders, autoimmune disorders, pain syndromes, malignant disorders and much more. Those living of this side of the spectrum experience life quite differently. Every day may be a struggle fraught with an array of challenges and discomforts. These folks are in pain. They sleep poorly- have mental health issues, and experience subjective and objective signs of a lack of good health or illness.
There are always unexpected factors and influences, such as illness, accidents or personal tragedy, which can precipitously change one's status. An individual experiencing all the benefits associated with column A can quickly find themselves experiencing a predominant column B status.
Sometimes it appears humans are incredibly resilient while at other times it appears we are delicate and tenuous. Of course most of do not live in either of the extremes of the continuum described. We reside somewhere in the middle of two,(I hope). Those of us closer to the the health side (column A) may at times be be better equipped to handle a new negative challenge than those who resides predominantly in column B. But this is not always the case: Enter the unpredictable world of infectious diseases.
Someone ranking high on the health side, may have a better immune system and fend off a typical case of pneumonia with relative ease. Influenza may be another matter. It turns out that the H1N1 strain of flu, last seen 91 years ago, caused the highest mortality and morbidity in those who would appear to be the healthiest, namely 20 to 40 year olds. In fact it was their excellent health that likely led to the disastrous outcomes. Their perfectly tuned immune responses actually became their Achilles heel. Hyper-responsiveness of the immune system led to an outpouring of pro-inflammatory cytokines. These are the chemical mediators which direct the activity of our immune system. Readers of this BLOG should be familiar with cytokines; these are the molecules responsible for Herxheimer reactions so frequently experienced with Lyme therapy. The overactive responses, called a cytokine storm, could be thought of as a Herx reaction on steroids, and could overwhelm the infected host and lead to organ failure.
Other insults to our health are much less predictable; I am thinking of Lyme disease.
Today I saw a woman who cannot comprehend how Lyme disease could have made her so ill. After all, she has done everything to promote the best possible health. She is committed to exercise, yoga, a vegetarian balanced diet, healthy relations, laughter and all the other positives noted in the column associated with good health. In fact her professional life centers around teaching others these concepts. The germ still prevailed. She has neuroborreliosis associated with significant cognitive deficits. Her brain MRI and SPECT scans confirm this. Against her innate judgment she has accepted the reality of a long and intensive treatment course of antimicrobial therapy.
Health and illness can exist on a balance beam. Sometimes all it takes is one factor, like Lyme disease, to act as the hair that broke the camels back. The weight of that hair varies for each individual.
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