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Lyme Disease information
Hello,
I'm new to this forum, but not to Lyme disease and other tick borne illnesses (TBI's).
Since this forum is also new I'd like to offer some science-oriented information gleaned from over a decade in Lyme forums and other Lyme lists.
To start---- this offering from ILADS (International Lyme and Associated Disease Society). www.ilads.org
Since TBI's are NOT an easily understood complex I'll post various articles that are science based.
The first one:
From www.ilads.org
Basic Information about Lyme Disease
Updated 4/15/06
1. Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.
2. Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease..
3. Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.
4. Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.
5. The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.
6. The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.
7. Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.
8. When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot®) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management.
9. There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.
10. Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease.
11. A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.
12. There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.
13. Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.
14. Many patients with chronic Lyme disease require treatment for 1–4 years, or until the patient is symptom-free. Relapses occur and maintenance antibiotics may be required. There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme disease is cured.
15. Like syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness.
Disclaimer: The foregoing information is for educational purposes only. It is not intended to replace or supersede patient care by a healthcare provider. If an individual suspects the presence of a tick-borne illness, that individual should consult a healthcare provider who is familiar with the diagnosis and treatment of tick-borne diseases.
I'm new to this forum, but not to Lyme disease and other tick borne illnesses (TBI's).
Since this forum is also new I'd like to offer some science-oriented information gleaned from over a decade in Lyme forums and other Lyme lists.
To start---- this offering from ILADS (International Lyme and Associated Disease Society). www.ilads.org
Since TBI's are NOT an easily understood complex I'll post various articles that are science based.
The first one:
From www.ilads.org
Basic Information about Lyme Disease
Updated 4/15/06
1. Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.
2. Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease..
3. Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.
4. Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.
5. The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.
6. The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.
7. Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.
8. When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot®) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management.
9. There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.
10. Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease.
11. A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.
12. There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.
13. Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.
14. Many patients with chronic Lyme disease require treatment for 1–4 years, or until the patient is symptom-free. Relapses occur and maintenance antibiotics may be required. There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme disease is cured.
15. Like syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness.
Disclaimer: The foregoing information is for educational purposes only. It is not intended to replace or supersede patient care by a healthcare provider. If an individual suspects the presence of a tick-borne illness, that individual should consult a healthcare provider who is familiar with the diagnosis and treatment of tick-borne diseases.
Millerman,
Where you tested? From a commercial lab that uses the ELISA?
Will you post your results of the lyme test?
I don't think you will have much luck with the LP finding the spirochete...
But, you're not alone in this. Testing is unreliable, but a negative test doesn't necessarily tell the whole story.
Have you done much reading about all of this?
ilads.org
wildernetwork.com
lymenet.org
are just a few places to begin understanding why testing for this very stealth bacteria isn't easy. You're symptoms imo, sure sound that a Tick-Borne Illness is what's causing you this discomfort.
the best,
tory
Where you tested? From a commercial lab that uses the ELISA?
Will you post your results of the lyme test?
I don't think you will have much luck with the LP finding the spirochete...
But, you're not alone in this. Testing is unreliable, but a negative test doesn't necessarily tell the whole story.
Have you done much reading about all of this?
ilads.org
wildernetwork.com
lymenet.org
are just a few places to begin understanding why testing for this very stealth bacteria isn't easy. You're symptoms imo, sure sound that a Tick-Borne Illness is what's causing you this discomfort.
the best,
tory
I'm awaiting blood results and LP results....I hope that between the two, one of them tests positive. Thanks for the info, everyone. Brain MRI was normal.
Tory said it very well. Also, I've heard of people who tested positive for lyme. Then had a negative spinal tap and were denied treatment because the tap was normal. They were told they didn't have lyme.
Rob,
Here's a quote from http://cpmcnet.columbia.edu/dept/nyspi/flatp/lymeoverview.html
"lumbar puncture while important in the differential diagnosis should not be used to exclude neurologic Lyme disease, as roughly 20-40% of patients with confirmed neurologic Lyme Disease may test negative on routine CSF assays."
Here's another:
Lyme Disease: Unraveling the Mystery of Misdiagnosis
by Marjorie Tietjen
"It is felt ,by a growing number of researchers, that one of the reasons for the inaccuracy of testing for lyme and coinfections, is due to pleomorphism. Pleomorphic organisms are those which change form according to the internal environmental conditions they are faced with. We will use Borrelia burgdorferi as an example. When researching or testing for lyme, most researchers and lab technicians are trying to identify the corkscrew or spiral shape of the organism, or they are trying to measure the body's immune reaction to this form of the microbe. The tests are looking for certain proteins which are specific to the spiral shape of the organism. The problem with this is that when the spirochete morphs into the cyst or L form, there are now different proteins associated with this new form of the organism which the old tests can not identify. This would lead to the conclusion that the current testing is missing a whole segment of this microbe's population in the patient's body.
Dr. Stephen Phillips, who has been researching Lyme Disease for the past 15 years, shared some of his research with doctors, patients and advocates at a Connecticut conference in 2005. Many doctors feel that spinal taps are the gold standard for diagnosing central nervous system lyme disease. Phillips tells us that pleomorphism enters into this situation. Phillips said that in one study that when the spiral form of Bb was injected into the spinal fluid, there was 100% conversion of Bb from the spiral form to the cystic form. This cyst form of the lyme microbe is being found in the spinal fluid of M.S. patients.
Phillips strongly suggests that Bb may be one of the causes of M.S. He stated that every feature that you see associated with M.S. can also be found in lyme disease. Two of the most striking shared diagnostic signs for Lyme and M.S are brain and cervical cord lesions.
I think the main idea we need to come away with ,concerning pleomorphism, is that perhaps we should be probing for the L or cyst forms of Lyme in many of our rapidly emerging diseases."
**************
In my non medical opinion:
you've had a LP, you've tested CDC positive for LD. Why consider another spinal? If the spinal was as easy as an MRI; then I guess retesting would be ok..but given the "problems" and spinal can cause? what's would be your hurry in yet another LP? Maybe putting this second LP off for awhile wouldn't be the worse choice either?
I only offered 2 sources of research above that states LP's aren't the easy answer to diagnose Lyme.
If you have a reaction to the IV Rocephin( a Jarish Herxheimer), or ANY antibiotic: that's your answer...
People without an infection DON'T feel lousy when on an antibioitc! They get better.
Hope this helps,
tory
Here's a quote from http://cpmcnet.columbia.edu/dept/nyspi/flatp/lymeoverview.html
"lumbar puncture while important in the differential diagnosis should not be used to exclude neurologic Lyme disease, as roughly 20-40% of patients with confirmed neurologic Lyme Disease may test negative on routine CSF assays."
Here's another:
Lyme Disease: Unraveling the Mystery of Misdiagnosis
by Marjorie Tietjen
"It is felt ,by a growing number of researchers, that one of the reasons for the inaccuracy of testing for lyme and coinfections, is due to pleomorphism. Pleomorphic organisms are those which change form according to the internal environmental conditions they are faced with. We will use Borrelia burgdorferi as an example. When researching or testing for lyme, most researchers and lab technicians are trying to identify the corkscrew or spiral shape of the organism, or they are trying to measure the body's immune reaction to this form of the microbe. The tests are looking for certain proteins which are specific to the spiral shape of the organism. The problem with this is that when the spirochete morphs into the cyst or L form, there are now different proteins associated with this new form of the organism which the old tests can not identify. This would lead to the conclusion that the current testing is missing a whole segment of this microbe's population in the patient's body.
Dr. Stephen Phillips, who has been researching Lyme Disease for the past 15 years, shared some of his research with doctors, patients and advocates at a Connecticut conference in 2005. Many doctors feel that spinal taps are the gold standard for diagnosing central nervous system lyme disease. Phillips tells us that pleomorphism enters into this situation. Phillips said that in one study that when the spiral form of Bb was injected into the spinal fluid, there was 100% conversion of Bb from the spiral form to the cystic form. This cyst form of the lyme microbe is being found in the spinal fluid of M.S. patients.
Phillips strongly suggests that Bb may be one of the causes of M.S. He stated that every feature that you see associated with M.S. can also be found in lyme disease. Two of the most striking shared diagnostic signs for Lyme and M.S are brain and cervical cord lesions.
I think the main idea we need to come away with ,concerning pleomorphism, is that perhaps we should be probing for the L or cyst forms of Lyme in many of our rapidly emerging diseases."
**************
In my non medical opinion:
you've had a LP, you've tested CDC positive for LD. Why consider another spinal? If the spinal was as easy as an MRI; then I guess retesting would be ok..but given the "problems" and spinal can cause? what's would be your hurry in yet another LP? Maybe putting this second LP off for awhile wouldn't be the worse choice either?
I only offered 2 sources of research above that states LP's aren't the easy answer to diagnose Lyme.
If you have a reaction to the IV Rocephin( a Jarish Herxheimer), or ANY antibiotic: that's your answer...
People without an infection DON'T feel lousy when on an antibioitc! They get better.
Hope this helps,
tory
I seen your response on another post - "No the LP is very unreliable. I think it shows positive like 10-20% of the time even if lyme is present".
Would this also be the case even if I already tested positive on a western blot and had a LP test for a second oppinion?
Thanks,
Rob
Would this also be the case even if I already tested positive on a western blot and had a LP test for a second oppinion?
Thanks,
Rob
Referring to your answer to Millerman,
Is the spinal fluid test reliable for ruling out Lyme?
I tested positive on a western blot igenex test through a Lyme Literate Doctor and I am having a LP through my Neurologist as a second oppinion for Lyme.
Thanks,
Rob
Is the spinal fluid test reliable for ruling out Lyme?
I tested positive on a western blot igenex test through a Lyme Literate Doctor and I am having a LP through my Neurologist as a second oppinion for Lyme.
Thanks,
Rob
Do you have numbness or tingling? If so, there are no sensory symptoms in ALS so that would rule out ALS. Sensory meaning no numbness, tingling, burning or other sensations. ALS causes weakness and wasting without sensory symptoms.
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