Concern about ticks?

[IslandTractor]

I have pulled ticks off me my whole life (46 years), with nothing more than a itch for a few days.
Last June I started getting really tired by 1-2PM, then my shoulder and knees hurt - sometimes.
Went to my primary doc, told him it hurts here, sometimes here, and the other day here, but nothing is hurting now. He sent me on my way, I was back in 2 weeks in bad shape begging for a lymes test, he did the Elisa test - neg.
2 months and 2 docs later, a doctor sent blood to Igenix for a western blot - positive.
3 days of being on Antibiotics I was 100%.
2 weeks after finishing Antibiotics I was crashing agian and had the joint pain.
This same thing went on through 3 courses on Antibiotics.
I am now 1 year later and on a 3 month regiment of 2 antibiotics and feeling fine.

Nick

There is a lot of overdiagnosis of Lyme with subsequent over treatment. You describe no true arthritis, cardiac or neurological symptoms which makes Lyme very unlikely. Taking antibiotics for months at a time is not always a benign therapy. Physicians who "specialize" in treating "chronic Lyme" have a financial interest in doing so and are hardly unbiased on the subject. I suggest you look carefully at the most recent national expert panel document on Lyme. Lyme Disease

 

[LostInTheWoods]

There is a lot of overdiagnosis of Lyme with subsequent over treatment. You describe no true arthritis, cardiac or neurological symptoms which makes Lyme very unlikely. Taking antibiotics for months at a time is not always a benign therapy. Physicians who "specialize" in treating "chronic Lyme" have a financial interest in doing so and are hardly unbiased on the subject. I suggest you look carefully at the most recent national expert panel document on Lyme. Lyme Disease

In medicine, there are "standards of care". These standards of care, by definition, are the acceptable standard practices expected of medical practitioners for a given problem. They are taught in medical school, reinforced through continuing education, and reevaluated as new evidence arises. I suppose when one reevaluates the new evidence, much rests on whom you consider rightfully belongs in the "national expert panel" for said problem.

In my estimation, the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) are preeminent. According to those sources, the approach to Lyme disease diagnosis is as follows:

The Association of State and Territorial Public Health Laboratory Directors, CDC, the Food and Drug Administration, the National Institutes of Health, the Council of State and Territorial Epidemiologists, and the National Committee for Clinical Laboratory Standards cosponsored the Second National Conference on Serologic Diagnosis of Lyme Disease held October 27-29, 1994. Conference recommendations were grouped into four categories: 1) serologic test performance and interpretation, 2) quality-assurance practices, 3) new test evaluation and clearance, and 4) communication of developments in Lyme disease (LD) testing. This report presents recommendations for serologic test performance and interpretation, which included substantial changes in the recommended tests and their interpretation for the serodiagnosis of LD.

A two-test approach for active disease and for previous infection using a sensitive enzyme immunoassay (EIA) or immunofluorescent assay (IFA) followed by a Western immunoblot was the algorithm of choice. All specimens positive or equivocal by a sensitive EIA or IFA should be tested by a standardized Western immunoblot. Specimens negative by a sensitive EIA or IFA need not be tested further. When Western immunoblot is used during the first 4 weeks of disease onset (early LD), both immuno- globulin M (IgM) and immunoglobulin G (IgG) procedures should be performed. A positive IgM test result alone is not recommended for use in determining active disease in persons with illness greater than 1 month's duration because the likelihood of a false-positive test result for a current infection is high for these persons. If a patient with suspected early LD has a negative serology, serologic evidence of infection is best obtained by testing of paired acute- and convalescent-phase serum samples. Serum samples from persons with disseminated or late-stage LD almost always have a strong IgG response to Borrelia burgdorferi antigens.

It was recommended that an IgM immunoblot be considered positive if two of the following three bands are present: 24 kDa (OspC) * , 39 kDa (BmpA), and 41 kDa (Fla) (1). It was further recommended that an that IgG immunoblot be considered positive if five of the following 10 bands are present: 18 kDa, 21 kDa (OspC) *, 28 kDa, 30 kDa, 39 kDa (BmpA), 41 kDa (Fla), 45 kDa, 58 kDa (not GroEL), 66 kDa, and 93 kDa (2).

I work for one of the nation's largest deliverers of medical care. The standards listed above are the standards followed by this organization, and the standards followed by other providers elsewhere with whom I have a working relationship.

One of the posters said, to paraphrase, "I had a tick bite. I developed a bulls-eye rash at that site". If he is absolutely certain this was the erythema migrans "bull's-eye rash" (a google search can bring up plenty of good pics for comparison), he should have a discussion with his healthcare provider.

This does not guarantee he has Lyme disease or STARI. It does mean it would be very interesting to know why he would have said rash and not have Lyme or STARI. In fact, the CDC has this to say about just such a presentation:

"Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans."

That being said, the standards may change in time. The source you mention might be evaluated further and eventually become the new standard. To my knowledge, it has yet to do so.

As for "physicians who "specialize" in treating chronic Lyme", I've never heard of such a thing. I do not, however, live in an area of the country with a significant Lyme disease presence. Perhaps if there's a market, so to speak, one might find a few modern day snake oil salesmen.

Very respectfully,

Lost

 

[IslandTractor]

In my estimation, the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) are preeminent. According to those sources, the approach to Lyme disease diagnosis is as follows:

The Association of State and Territorial Public Health Laboratory Directors, CDC, the Food and Drug Administration, the National Institutes of Health, the Council of State and Territorial Epidemiologists, and the National Committee for Clinical Laboratory Standards cosponsored the Second National Conference on Serologic Diagnosis of Lyme Disease held October 27-29, 1994.

No quibbles with this except to point out that 1) that document is 16 years old and while it was based on the best available data at that time, the new IDSA document goes further and updates it with data available the past year or so, 2) CDC and NIH are preeminent governmental institutions while IDSA is a professional society. They are all composed basically of individuals and there is a lot of overlap. For example, almost all the government scientists at CDC or NIH who would opine on Lyme disease diagnosis and management are IDSA members themselves. IDSA is basically just the infectious diseases professional organization that includes government, academic and practicing physicians. IDSA publishes guidelines on a wide variety of topics, not just Lyme disease. They all talk to each other (IDSA, NIH, CDC), use the same basic evidence based standards of literature review and pass drafts around before formal publication so it would be rather unusual for anything to come out of CDC, NIH or IDSA that created a lot of dissent from any of the others. Finally, (3) there has been a lot of debate over the past decade about the validity of "chronic Lyme disease" as a diagnosis and that has been addressed more directly in the recent IDSA document as the Chronic Lyme movement had not emerged as a considerable, web based force back when the 1994 document was prepared. Recently, the Connecticutt Attorney General, at the behest of various activists in the Chronic Lyme movement sued the IDSA regarding an earlier guideline (?2007) on Lyme which resulted in a very public reopening and review of the document and the science behind it. That review was recently completed and resulted in no changes. Science just does not support the notion that there are many people with difficult to document Lyme disease who do not respond to routine one time antibiotic therapy. There are many lay people (not many scientists or infectious disease physicians) who believe otherwise and with the power of the internet these atypical views are often more discussed in public web forums than the evidence based guidelines from IDSA, CDC and NIH. There is also a little industry of modern day snake oil salesmen built around treating "chronic Lyme" and those who make money off of it are certainly doing what they can to perpetuate these ideas. "Chronic Lyme", perhaps because the therapy advocated by it's proponents is relatively well accepted (who hasn't taken antibiotics after all) has just a bit more staying power than chronic EBV, chronic candidiasis or any number of other fad diagnoses that pop up periodically and are eventually dismissed as non existent and are eventually recognized as pseudoscientific mumbo jumbo. Medicine has never been able to explain all illnesses and cannot even treat all the ones that are legitimate; it just seems to be a part of human nature to try to fill in these gaps with confabulated diagnostic entities that promise hopeful therapies that will end our aches and pains.

 

[LostInTheWoods]

No quibbles with this except to point out that 1) that document is 16 years old and while it was based on the best available data at that time, the new IDSA document goes further and updates it with data available the past year or so, 2) CDC and NIH are preeminent governmental institutions while IDSA is a professional society.

Very true. Sixteen years is a long span of time in any profession. As stated previously, the standard of care however, remains as the guidance authored by the CDC, NIH, et al. For a medical provider to stray too far from the gold standard as it were, he/she is inviting a host of problems (litigation being foremost). That is not to say most providers haven't "strayed" on occasion. But for the case of this argument, Lyme disease is an area where straying too far from the beaten path is precarious. Hence the reason why the very large organization I work for, with its rather sizable population of in-house infectious disease specialists (many of whom are likely very much aware of the ISDA document you mention), has yet to alter course.

Now, I haven't spoken with the infectious disease folks, yet. Could be that they are championing the very ISDA document we're discussing, and it simply hasn't made its way through all the bureaucracy (very large organizations being what they are...). And believe me, I'm with ya :thumbsup:, things may change. And it may be this very study that leads to change.

Science just does not support the notion that there are many people with difficult to document Lyme disease who do not respond to routine one time antibiotic therapy. There are many lay people (not many scientists or infectious disease physicians) who believe otherwise and with the power of the internet these atypical views are often more discussed in public web forums than the evidence based guidelines from IDSA, CDC and NIH.

Again, I agree. And I believe the CDC/NIH agree. When there is significant cause to believe a patient has Lyme disease, "one time antibiotic therapy" is the ticket.

I have never personally had cause to even consider "chronic Lyme disease" as a diagnosis. To reiterate, my concern is for the poster that said "I had a tick bite and developed a bulls-eye rash". My personal opinion is that means Lyme or STARI until proven otherwise. But above all else, I state that he should speak with his trusted healthcare provider for further guidance. Work out the details with him/her, and discuss what if anything they wish to do about it.

Respectfully,

Lost

 

[IslandTractor]

To reiterate, my concern is for the poster that said "I had a tick bite and developed a bulls-eye rash".

My comments were directed at the story Slackdaddy posted and not about someone with an acute erythema migrans (Bull's Eye) rash. I don't think there is any real debate about what to do when such a rash appears after a documented tick bite.

Many if not most cases of "chronic Lyme" have never had this rash. To be clear, it is very possible to develop acute lyme disease without the rash and that is where the tricky part begins but one time antibiotic therapy is still considered the standard of care in those cases. My point is that vague symptoms are not really the hallmark of Lyme disease. Aches and pains and fatigue are not diagnostic signs of Lyme. Fever, true arthritis (hot swollen tender joints), carditis or defined neurological symptoms can be but that is quite different from the set of general "I don't feel good" types of symptoms that lead many to seek help for the generally bogus diagnosis of Chronic Lyme. Of course there are some exceptions, there always are in medicine, but I'd guesstimate that 95% of people who are undergoing non standard (ie multiple courses of antibiotics) for chronic lyme don't have any active lyme disease at all. I'd really suggest that anyone who has been labeled with this condition, especially if they have been treated multiple times, should seek an infectious diseases consultation at an academic center that deals with Lyme frequently (most medical schools in the northeast or upper midwest for example). If you are subjecting yourself to unproven therapy involving hassle, risk of side effects and considerable expense, it seems reasonable to get a second opinion.

Here is the link to the IDSA document. Note publication was 2006 but it was just reviewed by IDSA and no changes were made for 2010. http://www.journals.uchicago.edu/doi/full/10.1086/508667

A relevant quote from the IDSA document:
Unfortunately, it is apparent that the term “chronic Lyme disease” is also being applied to patients with vague, undiagnosed complaints who have never had Lyme disease. When adult and pediatric patients regarded as having chronic Lyme disease have been carefully reevaluated at university‐based medical centers, consistently, the majority of patients have had no convincing evidence of ever having had Lyme disease, on the basis of the absence of objective clinical, microbiologic, or serologic evidence of past or present B. burgdorferi infection [253, 268, 295http://www.tractorbynet.com/forums/#rf296http://www.tractorbynet.com/forums/#rf297–298]. In one study, >50% of such patients actually had other treatable disorders, such as depression, rheumatoid arthritis, bursitis, and myasthenia gravis [253]. If serologic testing for Lyme disease is done for chronically ill patients who only have fatigue or musculoskeletal complaints without any objective manifestation of Lyme disease, the test results have a poor positive predictive value [98, 99, 101, 102, 104, 270]. Regardless of the nature of the symptom(s), a low positive predictive value can also be anticipated if serologic testing is done for patients who do not reside in or travel to a geographic area where Lyme disease is endemic. Under these circumstances, the majority of patients with a positive test result will not have active B. burgdorferi infection and, accordingly, would be unlikely to obtain a durable response from antibiotic treatment directed at this infection. The fact that some antibiotic classes (e.g., tetracyclines and macrolides) have significant anti‐inflammatory effects exclusive of their antimicrobial effects [299, 300] can explain, in part, why uninfected patients with inflammatory conditions might also improve transiently while receiving these drugs.

 

[RickB]

I live in the Northeast's hotbed of Lyme occurrances. There is a lot of information posted here accompanied by editorializing by folks that don't live where Lyme is prevalent and don't have first- or even second-hand knowledge of the ravages of the disease. To suggest that a regimen of antibiotic therapy that might not be absolutely, positively indicated is more harmful than the risks of untreated Lyme is uninformed and downright foolish commentary. I have had acute Lyme twice, and my physican is sensitive to the early diagnosis and aggressive treatment of the disease, including treatment based on less than definitive diagnosis. If he were not, I would have a different doctor.

 

[IslandTractor]

I live in the Northeast's hotbed of Lyme occurrances. There is a lot of information posted here accompanied by editorializing by folks that don't live where Lyme is prevalent and don't have first- or even second-hand knowledge of the ravages of the disease. To suggest that a regimen of antibiotic therapy that might not be absolutely, positively indicated is more harmful than the risks of untreated Lyme is uninformed and downright foolish commentary. I have had acute Lyme twice, and my physican is sensitive to the early diagnosis and aggressive treatment of the disease, including treatment based on less than definitive diagnosis. If he were not, I would have a different doctor.

Not sure which comments you are referring to as "foolish commentary". There has been discussion of over diagnosis of chronic Lyme disease with consequent over use of antibiotics. That discussion has been pretty specifically in reference to "chronic" Lyme and documented with quotes from national authorities and based on systematic review of evidence from the scientific literature. No one to my reading of this thread has suggested that bonafide acute Lyme disease should not be treated with a single course of antibiotics.

 

[Richard]

Just an interesting point of update:

I've had maybe 4/5 ticks that I've pulled off me. One buried in my arm and two in the cheeks of my hiney. (not that anyone really wanted to know)

What I found curious was the reaction I seemed to have had. They are 80% healed now but STILL itch like a SOB. I had a little welt on my hiney, much like you get with a sting or a mosquito bite. Wasn't central to the tick bite... it was more like an extension out of that area. Almost like he hit a blood vessel and this welt followed the vessel for 2 inches.

Thing is.... none of these ticks were on me for very long. I'd say 12 hours max if even that much.

I've had ticks before...find them, remove them and life goes on. I have never ever had this kind of itchy reaction to them.

I'll no doubt have another prior to summer being over. I'm seeing my allergist in a couple weeks for a shot (bee sting allergies maintainence). Maybe I'll ask them if it's common to have a reaction to ticks.

 

[Ford850]

Just an interesting point of update:

I've had maybe 4/5 ticks that I've pulled off me. One buried in my arm and two in the cheeks of my hiney. (not that anyone really wanted to know)

What I found curious was the reaction I seemed to have had. They are 80% healed now but STILL itch like a SOB. I had a little welt on my hiney, much like you get with a sting or a mosquito bite. Wasn't central to the tick bite... it was more like an extension out of that area. Almost like he hit a blood vessel and this welt followed the vessel for 2 inches.

Thing is.... none of these ticks were on me for very long. I'd say 12 hours max if even that much.

I've had ticks before...find them, remove them and life goes on. I have never ever had this kind of itchy reaction to them.

I'll no doubt have another prior to summer being over. I'm seeing my allergist in a couple weeks for a shot (bee sting allergies maintainence). Maybe I'll ask them if it's common to have a reaction to ticks.

If you get tick bites that often, and have other allergies, you could have developed an allergic reaction to whatever they leave 'behiney'.

 

[dmccarty]

....
What I found curious was the reaction I seemed to have had. They are 80% healed now but STILL itch like a SOB. I had a little welt on my hiney, much like you get with a sting or a mosquito bite. Wasn't central to the tick bite... it was more like an extension out of that area. Almost like he hit a blood vessel and this welt followed the vessel for 2 inches.

he he he he He said "hiney." I won't ask who the lucky person was who removed the ticks. :laughing: Already TMI.

Sometimes I get welts but not very often. Itching is not as bad as it used to be from the chigger or tick bites. It used to be real bad. Keep you awake all night itching. Now I just might wake up to itch. :laughing:

Later,
Dan