Wednesday, March 21, 2012

12 One Pill Of Doxycycline Is Not Enough To Prevent Early Lyme Disease


This paper is being passed around the Lyme disease patient community that has everyone's attention. It's about the most effective timing and the use of one 200 mg capsule of doxycycline as prophylaxis to prevent Lyme disease after a tick bite.

The bottom line from the authors of the study: One 200 mg capsule of doxycycline is totally ineffective in preventing Lyme disease if it is administered 48 hours after a tick bite.

And even if administered in less than 48 hours, it is no guarantee of successfully preventing infection.

The following commentary comes from Dr. Elizabeth Maloney:

Since 2001 the IDSA has been recommending preventive treatment of a single dose of doxycyline for tickbites under certain narrow conditions.  Piesman et al. have just published a new article concluding that if the treatment is given as little as 24 hours after the bite, only 47% of the mice were cured. Piesman also concludes that "Prophylactic treatment was totally ineffective when delivered ≥2days (48hrs) after tick removal." The IDSA recommends treating if:

  • Tick is estimated to have been attached for ≥36 hours (based upon how engorged the tick appears or the amount of time since outdoor exposure)
  • Antibiotic treatment can begin within 72 hours of tick removal 
"If the person meets ALL of the above criteria, the recommended dose of doxycycline is a single dose of 200 mg for adults and 4 mg/kg, up to a maximum dose of 200 mg, in children ≥ 8 years"

In 2004 Zeidner et al. noted that the "sustained release" doxy was curative, but regular doxy only 43% effective. [ Antimicrob Agents Chemother. 2004 Jul;48(7):2697-9. Sustained-release formulation of doxycycline hyclate for prophylaxis of tick bite infection in a murine model of Lyme borreliosis.]

In 2008 Dolan et al. reported on the success of 14 days of exposure to antibiotic bait formulations..

Am J Trop Med Hyg. 2008 May; 78(5):803-5.
A doxycycline hyclate rodent bait formulation for prophylaxis and treatment of tick-transmitted Borrelia burgdorferi.Dolan MC, Zeidner NS, Gabitzsch E, Dietrich G, Borchert JN, Poché RM, Piesman J.

Abstract

The prophylactic and curative potential of doxycycline hyclate formulated in a rodent bait at concentrations of 250 and 500 mg/Kg was evaluated in a murine model of Lyme borreliosis. 
Both bait formulations prevented tick-transmitted Borrelia burgdorferi infection in 100% of C3H/HeJ mice (N = 16), as well as cured acute, established infection in mice (N = 8) exposed to bait for 14 days
Spirochete infection was cleared in 88.9% to 100% of infected nymphs feeding on mice fed 250 and 500 mg/Kg antibiotic bait formulations, respectively. These data provide evidence for exploring alternative techniques to prevent transmission of Lyme disease spirochetes.

In 2011 Wisconsin Journal of Medicine published a review detailing the failure of one-dose doxycycline prophylaxis and proposing an alternative, more effective treatment option. (Maloney, B. The management of Ixodes scapularis bites in the upper Midwest. WMJ. 2011 Apr;110(2):78-81; quiz 85.) 
The full text article is available at: http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/110/2/78.pdf

This month Peisman and Hoigaard note that "prophylactic treatment was totally ineffective when delivered ≥2days after tick removal." [2 days = 48 hrs]

Ticks Tick Borne Dis. 2012 Mar 13. [Epub ahead of print] Protective value of prophylactic antibiotic treatment of tick bite for Lyme disease prevention: An animal model. Piesman J, Hojgaard A.

Abstract

Clinical studies have demonstrated that prophylactic antibiotic treatment of tick bites by Ixodes scapularis in Lyme disease hyperendemic regions in the northeastern United States can be effective in preventing infection with Borrelia burgdorferi sensu stricto, the Lyme disease spirochete. 
A large clinical trial in Westchester County, NY (USA), demonstrated that treatment of tick bite with 200mg of oral doxycycline was 87% effective in preventing Lyme disease in tick-bite victims (Nadelman, R.B., Nowakowski, J., Fish, D., Falco, R.C., Freeman, K., McKenna, D., Welch, P., Marcus, R., Agúero-Rosenfeld, M.E., Dennis, D.T., Wormser, G.P., 2001. Prophylaxis with single-dose doxycycline for the prevention of Lyme disease after an Ixodes scapularis tick bite. N. Engl. J. Med. 345, 79-84.). 
Although this excellent clinical trial provided much needed information, the authors enrolled subjects if the tick bite occurred within 3days of their clinical visit, but did not analyze the data based on the exact time between tick removal and delivery of prophylaxis. An animal model allows for controlled experiments designed to determine the point in time after tick bite when delivery of oral antibiotics would be too late to prevent infection with B. burgdorferi
Accordingly, we developed a tick-bite prophylaxis model in mice that gave a level of prophylactic protection similar to what had been observed in clinical trials and then varied the time post tick bite of antibiotic delivery. We found that two treatments of doxycycline delivered by oral gavage to mice on the day of removal of a single potentially infectious nymphal I. scapularis protected 74% of test mice compared to controls. When treatment was delayed until 24h after tick removal, only 47% of mice were protected; prophylactic treatment was totally ineffective when delivered ≥2days after tick removal. 
Although the dynamics of antibiotic treatment in mice may differ from humans, and translation of animal studies to patient management must be approached with caution, we believe our results emphasize the point that antibiotic prophylactic treatment of tick bite to prevent Lyme disease is more likely to be efficacious if delivered promptly after potentially infectious ticks are removed from patients.


There is only a very narrow window for prophylactic treatment to be effective post tick removal.

In my opinion, a study like this one should have been done long ago. How many studies were used to make the original determination that one 200 mg capsule of doxycycline would be an appropriate method of prophylaxis against Lyme disease? 

 And the obnoxious thing is, I was given this treatment! I had a tick bite, I had an EM rash, I was concerned about Lyme disease - and the first doctor I saw said there was no Lyme disease in the area in which I had been bitten, but I was given the one pill of doxycycline as some sort of consolation prize... The implication from the doctor being that the bite was most likely nothing to worry about and the pill being given to me to placate me.

Well, this prophylaxis apparently was not very prophylactic, now, was it?

I am pretty sure I saw the doctor 3-4 days after the tick bite, when I was given the prescription paper to fill it for one capsule of doxycycline.

This prophylactic approach never made sense to me from the day I first learned about the one pill preventative.

Since my failed experience of preventing Lyme disease, I've learned that different strains/subspecies of Borrelia burgdorferi disseminate at different rates, with different bacterial loads from different bites. If infection is present - one pill is hardly going to stop it. And if a coinfection is present, it may have an impact on the immune system which is hard to predict and may alter how effective an antibiotic is on the big picture.

One of the things I've learned in the past couple of weeks of doing research on Russian web sites about how patients are affected by Lyme disease and what treatments are given to patients there is that there is more of a sense of urgency of treating Lyme disease early and also aggressively. This is not to say that the Russian approach of managing Lyme disease is the best overall - they too have a problem with chronic Lyme disease - and so far as I can see, have not found the perfect treatment for it.

But if what I read so far is to be taken into account, then their approach has been to treat Lyme disease as early as possible and have doctors remove ticks as soon as one has a tick bite because research has shown the earlier a tick is removed properly, the greater the risk is reduced in transmitting infection.

In addition to encouraging immediate professional tick removal and early treatment during the acute stage, a number of medical clinics and web sites recommend a few days of prophylactic doxycycline - rather than one pill.

I am still looking for Russian research papers which support this approach - so perhaps take this information with some caution. But here are two sites which mention this approach which would appear to be legitimate resources:

First site, the equivalent of city council pages for  Lipetsk:

From an order marked:

ORDER KM Lipetsk region from 09.09.2004 N 523, SEC in the Lipetsk region dated 04.08.2004 N 78-ns, "ESTABLISHMENT OF Surveillance of Ixodes tick-borne borreliosis in the region" (with "GUIDELINES", "PLAN OF SCIENTIFIC AND PRACTICAL WORK on the prevalence of Ixodes tick-borne borreliosis in Lipetsk region for 2004 - 2005 HS. ")

Administration of Lipetsk Region

DEPARTMENT OF HEALTH
on September 9, 2004 N 523

SEC in the Lipetsk Region
on August 4, 2004 N 78-ns

ORDER ON Surveillance FOR Ixodes tick-borne borreliosis -- Excerpt:
"Carry an emergency antibiotic prophylaxis should be based only on display in the pathogen attached ticks. In the case of the pathogen in the vector and not later than 3 days. of tick suction in patients prescribed a course of doxycycline at 0.1 x 1 time per day for 5 days (children under 8 years of this antibiotic is not indicated).

Later on the third day from the time course of doxycycline tick suction extended to 10 days. Other antibiotics, which can be used for preventive treatment, drugs are prolonged penicillin: bicillin 3 or retapen (ekstentsillin) at a dose of 2.4 million units. intramuscularly once after a skin test on the individual tolerance of antibiotic.

Has a high efficiency combination drug amoxicillin with clavulanic acid (amoxiclav) to 0.375 g, 3 times a day, 5 days.
When carrying out emergency prophylaxis following should be considered (Appendix 9):
- Epidemiological history - a fact suction to the skin of ticks;
- Results of microbiological studies, parazitologo - detection of Borrelia in the attached ticks by dark-field microscopy or PCR;
- Start of antibiotic timing - as soon as possible after the suction (after the 5th day of tick suction inappropriate use of approved schemes), early prevention of borreliosis - a day after the suction of an infected tick Borrelia - can be recommended only when a negative result of the study attached ticks in the ELISA CEA antigen;
- A good individual tolerability of recommended antibiotics;
- Carrying antibiotics under medical supervision;
- Follow-up visit within 1 - 3 months after the course of antibiotic prophylaxis in SDS"

In Russian:

ПРИКАЗ УЗ Липецкой области от 09.09.2004 N 523, ЦГСЭН В Липецкой области от 04.08.2004 N 78-пв "ОБ ОРГАНИЗАЦИИ ЭПИДЕМИОЛОГИЧЕСКОГО НАДЗОРА ЗА ИКСОДОВЫМ КЛЕЩЕВЫМ БОРРЕЛИОЗОМ В ОБЛАСТИ" (вместе с "МЕТОДИЧЕСКИМИ РЕКОМЕНДАЦИЯМИ", "ПЛАНОМ ПРОВЕДЕНИЯ НАУЧНО-ПРАКТИЧЕСКОЙ РАБОТЫ ПО ИЗУЧЕНИЮ РАСПРОСТРАНЕНИЯ ИКСОДОВОГО КЛЕЩЕВОГО БОРРЕЛИОЗА НА ТЕРРИТОРИИ ЛИПЕЦКОЙ ОБЛАСТИ НА 2004 - 2005 ГГ.")

2.8. Экстренная антибиотикопрофилактика ИКБ

Проводить экстренную антибиотикопрофилактику следует только на основании индикации возбудителя в присосавшемся клеще.

В случае обнаружения возбудителя в переносчике и не позднее 3 сут. после присасывания клеща пациентам назначают курс доксициклина по 0,1 х 1 раз в сутки в течение 5 дней (детям до 8 лет данный антибиотик не назначают).

Позже третьего дня от момента присасывания клеща курс доксициклина продлевается до 10 дней. Другими антибиотиками, которые могут быть использованы для превентивного лечения, являются препараты пролонгированного пенициллина: бициллин-3 или ретапен (экстенциллин) в дозе 2,4 млн. ед. внутримышечно однократно после проведения внутрикожной пробы на индивидуальную переносимость антибиотика.

Высокой эффективностью обладает комбинированный препарат амоксициллина с клавулановой кислотой (амоксиклав) по 0,375 г 3 раза в сутки 5 дней.

При проведении экстренной антибиотикопрофилактики необходимо учитывать следующее (приложение 9):
- данные эпидемиологического анамнеза - факт присасывания к кожным покровам иксодовых клещей;
- результаты паразитолого-микробиологических исследований - выявление боррелий в присосавшихся клещах методом темнопольной микроскопии или ПЦР;
- сроки начала антибиотикопрофилактики - как можно раньше после присасывания (позже 5-го дня после присасывания клеща использование рекомендованных схем нецелесообразно), ранняя профилактика боррелиоза - через сутки после присасывания зараженного боррелиями клеща - может быть рекомендована только при отрицательном результате исследования присосавшегося клеща в ИФА на антиген КЭ;
- хорошая индивидуальная переносимость рекомендуемых антибиотиков;
- проведение антибиотикопрофилактики под контролем врача;
- контрольное обследование через 1 - 3 месяца после проведенного курса антибиотикопрофилактики на ИКБ.

Source: Network of Lipetsk Region http://lipetsk.news-city.info/docs/sistemsv/dok_oegvgi/index.htm

And then here's another, for Nizhny Novgorod State Medical University, which has been around since 1920:
"At the present time in Nizhny Novgorod and the region is high infection of ticks with borreliae, there are also ticks infected with tick-borne encephalitis. You must know the pattern of action in the case of tick suction.

First, you must remove the tick, while maintaining its viability. You can do it yourself or by contacting the trauma center in your area.

Remote mite be sent to study in Nizhny Novgorod Research Institute of Epidemiology and Microbiology. Academician I. Blokhina (St. Georgia 44, 433-76-55, 434-17-71, www.micro.nnov.ru). Within a day you will get the result of the study.

If the tick was infected with Borrelia, to conduct preventive 10-day course of doxycycline (T. Doxiciclini 0,1 to 1 m, 2 times a day).

If the tick was infected with tick-borne encephalitis, showed immunoglobulin, but the free drug can qualify only if after the bite was not more than 4 days."
The above, in Russian:

"В настоящее время на территории Нижнего Новгорода и Нижегородской области высока инфицированность клещей боррелиями, встречаются также клещи, инфицированные вирусом клещевого энцефалита. Необходимо знать схему действий в случае присасывания клеща.

Во-первых, клеща необходимо удалить, сохранив его жизнеспособность. Сделать это можно самостоятельно либо обратившись в травмпункт Вашего района.

Удаленного клеща необходимо отправить на исследование в Нижегородский НИИ эпидемиологии и микробиологии им. академика И.Н. Блохиной (Ул. Грузинская 44, 433-76-55, 434-17-71, www.micro.nnov.ru). В течение 1 суток Вам предоставят результат исследования.

В случае, если клещ был инфицирован боррелиями, необходимо проведение профилактического 10-дневного курса доксициклина (T. Doxiciclini 0,1 по 1 т. 2 раза в день).

Если клещ был инфицирован вирусом клещевого энцефалита, показано введение иммуноглобулина, но на бесплатный препарат можно претендовать лишь в том случае, если с момента укуса прошло не более 4 дней."
Source: http://www.nizhgma.ru/studentu/kafedry/infekc/uchmat/klesh/


So far as I can see, the use of a longer period of prophylactic treatment is advised - but the public health department also makes an effort to test the tick you have had on you for the presence of bacteria and viruses. The turn around time is less than 24 hours for results.

The only problem with this approach is that if you get a tick bite which is not obvious and it is not found right away, the odds of getting Lyme disease and/or Tick-borne encephalitis (TBE) are greater. Treatment may come too late to help a patient - particularly in the case of  TBE, where immunoglobulin for TBE and antiviral medication will only help if administered in under 72-96 hours after the tick bite.

There are three reasons I suspect Russia is more aggressive in its approach:

1) While the odds of getting TBE are lower than the odds of getting Lyme Borreliosis, TBE has a much higher risk of leading to acute severe illness and death. The older one is when they are infected with TBE, the higher the odds are of serious complications and fatality.

2) The most common strain of Borrelia people are infected with in Tomsk - a highly endemic area of Russia - is B. garinii, and a specific type of B. garinii quickly disseminates to the CNS more quickly than other strains. To prevent neuroborreliosis and widespread dissemination to other organs, a longer prophylactic course is needed as soon as possible.

3) Polymicrobial or coinfection is not uncommon. It is possible to be infected with both Lyme Borrelia and TBE, or more than one strain of Borrelia burgdorferi, and perhaps throw in Anaplasmosis in there as well. One has to be very careful of how to treat such cases - if TBE is present, it must be treated first since it moves fast, is more dangerous, and early antibiotic use is contraindicated in its presence.

All this said, I do wonder how it was determined that prophylaxis should be 5-10 days, based on circumstances surrounding the bite. This is a much longer course than the IDSA has suggested.

And frankly, this sort of treatment is what I wish I had if it would have prevented the situation in which I now find myself.

If you found this post interesting and informative, you may want to read this one as well:
http://campother.blogspot.com/2010/12/dr-david-volkmans-letter-to-idsa-lyme.html

Addendum [April 29, 2012]: I wanted to add the following passage from a paper from The Canadian Entomologist:
"Studies of the transmission dynamics of B. burgdorferi in I. scapularis indicate that the risk of transmission of strain B31 by a single bite from an infected tick is about 2% and that the risk increases with the length of time that the tick is attached (Hojgaard et al. 2008). 
When a tick first attaches, spirochetes are still found in the midgut and are producing outer-surface protein A (OspA), which helps spirochetes adhere to a midgut protein, TROPSA. When feeding begins, the spirochetes are exposed to warm mammalian blood and lowered pH, and OspA is downregulated while OspC is upregulated. Spirochetes then migrate from the midgut to the salivary gland and transmission to the vertebrate host can be achieved (e.g., Hojgaard et al. 2008). This delay in transmission explains why transmission is reduced when ticks are removed within 24 h of attachment (Hojgaard et al. 2008). 
In Europe, transmission of B. burgdorferi s.s. and B. afzelii by I. ricinus occurs in less than 24 h, but the risk of transmission still increases over time (Kahl et al. 1998; Crippa et al. 2002). In a further complication of the host—tick—pathogen interaction, B. burgdorferi s.l. is able to increase expression of an Ixodes salivary protein, Salp 15, to protect against complement-mediated killing of Borrelia by the host's innate immune system (Ramamoorthi et al. 2005). This protective effect was greater when the vector was I. ricinus rather than I. scapularis (Schuijt et al. 2008). The early expression of ospC appears to be essential for B. burgdorferi to escape innate immunity and disseminate in the host (Gilbert et al. 2007), and yet persistent infection of the host is only possible when ospC is downregulated after infection because acquired antibodies to OspC allow the spirochetes to be cleared (Tilly et al. 2007). Current understanding of the interactions of tick saliva and B. burgdorferi is discussed in Anderson and Valenzuela (2007)."
Source: http://www.bioone.org/doi/full/10.4039/n08-CPA04

Janet L.H. Sperling, Felix A.H. Sperling. Lyme Borreliosis in Canada: Biological Diversity and Diagnostic Complexity from an Entomological Perspective. The Canadian Entomologist 141(6):521-549. 2009 doi: http://dx.doi.org/10.4039/n08-CPA04

The above passage is important to note because it outlines the fact that the rate of transmission of spirochetes from the tick to its host varies based on a number of factors including Borrelia strain, the type of tick involved, Salp15 production levels, expression of ospC, and length of time the tick has been attached.

Based on this research, it is clear additional research is needed to determine if strains of Borrelia burgdorferi other than B31 in Ixodes scapularis and Ixodes pacificus would have differing transmission times tested under the factors mentioned. The same sort of studies would be beneficial for Europeans on Ixodes ricinus and other European Ixodes ticks.

[Edited March 22, 2012 - First paragraph said "100 mg capsule of doxycycline", was changed to "200 mg capsule of doxycycline".]


Image credit: Doxycycline 100 mg capsules. By Shorelander, Wikimedia Commons.


12 comments:

  1. Am I pissed off about this? You better believe it, I am pissed.

    ReplyDelete
  2. It is almost as if the IDSA guidelines are set in stone and superhuman efforts are required for any change, even if they are sorely required. Why is this? What is wrong with the authors of these guidelines, don't they want to do everything in their power to help patients? No wonder patients are pissed off.

    ReplyDelete
  3. Anonymous 01:03 PM,

    I can't easily answer your question. I don't know. I know what others have said, though: One is that they have so much at stake that they cannot admit any fault, and in doing so, it would leave them in a difficult position (to save face; the risk of economic and legal setbacks). Another is that they are pretty much by the book - to them, if something is uncertain it is not possible until it is proven beyond a doubt.

    This second piece of conjecture is one I'm choosing to focus on now, as I've heard some infectious disease specialists would not accept Piesman and Hojgaard's recent study as evidence that current guidelines for prophylactic treatment should change - they would only accept evidence from a human study.

    This is, of course, problematic. When you have been as sick as I have been and developed persisting symptoms, I think the first thing on your mind after getting yourself well is how to prevent the same horrible thing from happening to anyone else.

    Plenty of animal studies have formed the basis for what we initially try on people, and what doctors may try using empiric therapy under certain circumstances. Mice share 90% of our genome, and researchers have learned a lot about how Borrelia burgdorferi affects the immune system by studying mice.

    And treatment decisions for humans have been made using murine studies. I think that when it came to deciding to treat people with antibiotics for Lyme disease, early murine studies helped determine how well vancomycin would fare against ceftriaxone. With Zeidner et al's study mentioned above, the abstract states the outcome: "These studies indicate that a single injection of a sustained-release formulation antibiotic may offer a viable prophylactic treatment option for multiple infectious agents in patients presenting with tick bites."

    (more)

    ReplyDelete
  4. (For Anonymous 01:03 PM - cont'd)

    The Zeidner paper was published in 2008. Why not use it in a study where people with early tick bites are all treated using this method in order to prevent infection - particularly coinfection - from getting established?

    There is not enough research being done on treatment issues - not just for those with chronic Lyme disease - but on more serious preventative treatments.

    At the same time, I can't tell you what duration and kind of antibiotic treatment is optimal for effective prophylaxis... Amazingly, the Robert Koch Institute has reported in the past that they recorded suggested prophylactic treatments from around the world which were anywhere from a few days to 3 weeks, and none of these treatments had been studied in clinical studies or trials. I wish I could find the original resource; it's drowned in the memory pool now.

    I only hope that by using antibiotics for 5-10 days, that Russian patients end up beating Lyme disease and coinfections early on and fewer end up with chronic symptoms. I really see their approach as more rational, in a sense - they test any ticks found on people and begin antibiotics immediately if Lyme Borrelia and other bacterial infections are found (but not if TBE is found - that must be treated FIRST).

    Some may argue against that - what if the person has not been infected, aren't we risking overtreating them? Given what I've been through, if others knew what it was like to have Lyme disease, I think most if not nearly all people would say, "Give me the antibiotics for this - but you can withhold them for the sinus infection I develop after a cold." If antibiotic resistance is the concern, we have so many other conditions and situations in which their use can be curtailed if not eliminated (factory farms?).

    I think their approach is sensible, and in Russia's case (as all around Europe) it makes sense because you need to know asap if someone has TBE, regardless. You treat that as soon as possible to prevent serious complications and death. This way they can also nip off the worst potential costs to society for Lyme disease in its acute stage - earlier treatment means fewer sick days, more productive time at work, and lower risk of long term complications.

    Regardless of not knowing what the best prophylactic treatment actually is, these studies show promise if they can prevent more cases of Lyme disease. Piesman and Hojgaard and Zeidner should be paid attention to and not ignored.

    Sitting around doing nothing more to prevent more people from my fate is NOT the right answer. I have paid the price for someone else's poor diagnostic skills and undertreatment. I don't want anyone else to.

    ReplyDelete
  5. 'I have paid the price for someone else's poor diagnostic skills and undertreatment. I don't want anyone else to.' How many thousands the world over have paid that price so that those handful of authors of the discredited IDSA guidelines shall keep their reputations. History will expose them for what they are but sadly how many more will suffer ignorant because our Health Authorities couldn't even get the basics right. When will they start to listen?

    ReplyDelete
  6. Joanne,

    I don't even know where to start with the whole issue of the guidelines and how they could be overhauled. I agree that taking them off the national clearinghouse is in line with the clearinghouse's rules to begin with. I also think they need to take new research into account. However... and this is my personal sticking point, I know: What should new guidelines state and why?

    I think this is where I come up short, because I really do not know what the best answer is to that question. I do think that some people need extended or additional antibiotic treatment. I also think some people have developed autoimmune conditions as a result of their infections, and they need to have their condition recognized and treated, too. So I get that far - but I'm not sure what the exact details should be based on current research.

    Things obviously need to change. There is room for improvement. But what do you think needs to change, specifically? Other than attitudes about chronic Lyme disease and how the medical profession at large have often treated us?

    I would like to begin with more recognition that Lyme disease is a serious problem, and that people who suffer from chronic Lyme disease are not crazy - we're ill. That would be a start: Get everyone to take this seriously.

    The second thing would be to incorporate new research into guidelines in a way that makes sense, supports the patient, and leaves a little flexibility in treatment. I'm not saying anything goes, by the way - I have an issue with that, honestly. But I am saying that based on clinical judgment of individual patients, I'd like to see some more flexibility in prescribing antibiotics and other treatments which help patients.

    ReplyDelete
  7. I think one thing that really sticks out for me after hearing a lot of people's stories about their Lyme disease experience (and also my own experience) is that it seems that many doctors are not even following the basic IDSA guidelines as they stand.

    Family physicians, urgent care doctors, and others who are the first doctors people see when they get a tick bite (this should be easy, people, c'mon - you have a tick bite, and even an EM rash, too, so wtf?) and they need to at least be following the current guidelines in lieu of anything else. And in many cases... they aren't. Or at least, they haven't been.

    So it's been a sad but ironically true story that I've heard a few people say that when they bypassed their family doctor's misdiagnosis and went straight to an infectious disease doc that there they actually at least got treatment according to the guidelines. (I'm not saying all infectious disease doctors are awesome - they aren't, but they aren't all awful as some people have painted them, either. They are not all in league with the opinions of Steere and the guidelines panelists.)

    Now WHY family doctors and urgent care doctors are seemingly so clueless as patients have reported, I have no idea. This was a big problem even back in 1993 during the Senate hearings on Lyme disease, where it was mentioned that many doctors in Connecticut (of all places!) did not have a clue.

    ReplyDelete
  8. CO,

    You wrote:

    Am I pissed off about this? You better believe it, I am pissed.

    You have every right to be angry. That doctor gambled with your health -- and for no good reason. It makes me very angry to know that others have also found themselves in a similar situation and are now suffering as a result.

    The single-dose-of-doxy approach to treating/preventing Lyme disease has always seemed like a questionable practice to me. Treating a person who is exhibiting possible signs of Lyme disease with a single pill just doesn't make any sense at all (at least not to me). If a week (or two) of doxy is really that risky/dangerous (in the eyes of some medical professionals), why aren't those same doctors also objecting to the use of long-term antibiotics for people with acne, rosacea, and gingivitis (as just three examples)? It just makes no sense!

    Mostly I wanted to stop by and say "hi". I've been preoccupied with trying to find an affordable place to live in a city where housing is outrageously expensive. This exercise is proving to be just as challenging and time-consuming as I anticipated it might be. On the other hand, it's nothing compared to the ongoing insanity surrounding Lyme disease.

    I still meet people who have never even heard of Lyme disease. There's still lots of work to be done on the public education level here in Canada (and no doubt elsewhere). Once I find a suitable place to live, I'll do my best to continue spreading the word about Lyme disease in the hope that others can be spared some of truly needless suffering that goes along with undiagnosed/untreated tick-borne illnesses.

    I do have great difficulty understanding why some doctors in even highly endemic areas for Lyme disease remain so clueless about it. If nothing else, one would think medical professionals would want to be aware enough to protect themselves and their loved ones. Then again, I suppose they can't possibly keep up with the latest information about every possible medical condition. This is true even when it comes to cancer, heart disease and other health conditions. It never fails to upset/dismay me when I hear someone talk about a delayed diagnosis and treatment because their doctor missed important (and sometimes rather obvious) clues and/or failed to order pertinent tests in a timely manner. It also really bothers me that people with Lyme disease are often forced to confront the controversy instead of working in a collaborative manner with healthcare professionals to restore their health.

    Okay, this wasn't intended to be a rant, so I'll say 'bye for now.

    ReplyDelete
  9. I just want to add here what Dr. Elizabeth Maloney said about the original 200 mg doxycycline study in general, because I think it bears repeating:

    "There are several problems with the IDSA recommendation.

    The application of the required criteria to primary care practices in Wisconsin and Minnesota may be problematic. Medical professionals are encouraged to acquire the ability to identify ticks and assess engorgement, but physicians lack opportunities to do so. The assessment criteria are based on a study that employed a medical entomologist; community physicians are not likely to have, or develop, this level of expertise.

    External validity is the ability of the cause-and-effects relationships in an experimental study to be generalized to a clinic setting. External validity is “poor” if the study situation differs from the typical clinical situation in ways likely to affect outcomes, as is the case here.

    Furthermore, bites from ticks damaged or discarded following identification by non-medical personnel would not receive prophylaxis, yet withholding treatment solely on those grounds exposes patients to the risk of infection. In addition, physicians would need to know the current infection rates for various tick populations, but this data
    is often unavailable and tick infection rates in the same general locale vary significantly from year to year, potentially leading to inaccurate risk assessments.

    The antibiotic regimen recommended by the IDSA is based on the single-dose doxycycline trial, but that trial cannot inform physicians regarding Lyme disease prevention. Lyme disease is a multi-systemic illness having both early and late manifestations; patients may be asymptomatic early in the infection only to develop symptoms of late disease after a latent period lasting months to years.

    The single-dose doxycycline trial employed a 6-week follow-up period, too short a timeframe to allow for the development of late Lyme disease. Thus, the ability of a single 200-mg dose of oral doxycycline to prevent Lyme disease following a tick bite was not demonstrated. Nor did the study investigate the effectiveness of single-dose oral doxycycline on the prevention of early Lyme disease.

    Data from the Centers for Disease Control and Prevention indicates that 30% of all Lyme disease patients fail to exhibit an erythema migrans rash in the course of their illness, yet the trial’s primary endpoint was strictly limited to the development of an erythema migrans rash at the bite site. Three study subjects (1 in the doxycycline group and 2 in the placebo group) had clinical and laboratory evidence consistent with early Lyme disease, but because they lacked an erythema migrans, they were not considered “disease positives” when treatment efficacy was calculated.

    The trial’s short observation period and narrow disease definition limit the scope of its findings. A single 200-mg dose of oral doxycycline successfully prevented the development of erythema migrans at the bite site, but its ability to prevent all stages of Lyme disease remains unknown."

    There's more. Check out the paper: http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/110/2/78.pdf

    ReplyDelete
  10. Rita,

    Thanks for reading and commenting. You've been quiet here lately, and now I know why. Good luck house hunting, I hope you find a nice place soon.

    I don't have time to leave a lengthy comment now, so I'll just say that the stories of incompetence I have heard are unbelievable, and I don't understand to this day why I didn't get more antibiotics as soon as my obvious EM rash was shown to the doctor. One pill for someone who already has a classic sign of Lyme disease is not only inadequate - it is dangerously irresponsible.

    I did eventually get antibiotics in me, but it wasn't until a few months after the bite that I got any in me of consistent duration due to a serious allergic response to the previous antibiotic tried. I think the delay - more than anything - screwed me.

    ReplyDelete
  11. I'm not sure if this is the right forum for this, but I'm hoping I can get some advice from this community.

    Yesterday afternoon I found a tiny (smaller than a poppy seed) tick on my thigh. I removed it and, clearly not thinking and in a state of freak out, flushed it down the toilet. It left a tiny red bump. I had been camping over the weekend, so the tick was on me for AT LEAST 24 hours, most likely longer.

    I called my doctor, explained the situation, and she prescribed me the 200 mg single dose of doxycycline and told me not to worry, chances of lyme disease were low, and that I should be fine. I took the 200 dose last night.

    Now, after doing a bit more research, I'm worried that this is not enough.

    I'm not sure what to do. Should I wait and see if I develop any symptoms, such as the bulls-eye rash, flu-like symptoms, etc, and then move forward with a longer 30+ antibiotic program? Or should I be overcautious and find a doctor that will give me this, despite not having any symptoms so far other than the tick bite?

    If I don't develop any symptoms, does this mean I'm in the clear? I know that many lyme disease tests can take months to show positive.

    I currently have a cold, but my husband had a bad cold last week so I suspect I picked it up from him. I don't think it is a result of the tick as my symptoms seem very cold-like and not flu-like. I have no fever and currently no rash, just a tiny red bump.

    Any advice/thoughts would be greatly appreciated.

    Thank you!

    ReplyDelete
  12. Hi Serena, and welcome to Camp Other blog -

    I am sorry I did not see your comment earlier and a couple days have passed since you submitted it for moderation. I hope you have talked to others in the meantime, and received good advice.

    If you haven't yet talked to anyone, my suggestion that follows is not medical advice as I am not a doctor, but information that you may want to consider in deciding what to do:

    Right now, it sounds like you've assessed your own situation and figured you have a cold you got from your husband. I think you're probably right on that count, but having a cold today doesn't mean that you can't also pick up an infection from a tick bite in the same time period and have symptoms from a tickborne disease in the near-future or even later on.

    The earlier you can treat Lyme disease, the more likely it is you'll avoid long term complications and possibly serious disability.

    The problem is at this early stage there is no way to be certain you avoided being infected, and even if you don't show any signs of symptoms now or weeks or a month later, it is possible that signs of late stage infection will show up later (arthritis, cognitive problems, fatigue, etc). You can "skip steps" and go from being okay to developing later stage symptoms, unfortunately.

    Some doctors are aware of this issue, and if you were bitten in a highly endemic area for Lyme disease, will give you at least 3-4 weeks of doxycycline. They won't just give you one pill for prophylaxis, and if you look at even the conservative IDSA guidelines, in a 2009 review one of the reviewers wanted to downgrade the strength of the evidence to support that low dose prophylaxis (currently moderate; not even strongly advised), and Piesman and Hojgaard's research above with mice suggests that low dose prophylaxis is not enough for prevention of Lyme disease if one has it.

    Also, note that if your doctor gives you 3-4 weeks of doxycycline and that nips it in the bud because it was taken care of early, one still has to be aware of the other tickborne diseases which could have been transmitted and look out for symptoms of those and get those treated as well if they are present - one of them requires different drugs, different treatment.

    Where in the US were you bitten (I'm assuming US - sorry if I am wrong), and do you know if it was a deer tick which took a bite out of you or was it a Lone Star tick? Different kind of tick entirely?

    How was your tick removed and did you leave any part of it behind, stuck in the skin?

    Personally, after what I've been through, if a doctor offered me 3-4 weeks of doxycycline in your shoes I would take it. Especially at this early time. My life changed overnight due to delay in treatment for one infected tick bite and it did not change for the better. The first two years post-bite were a nightmare, and things have been a rollercoaster since then.

    But this is my history and my situation. Your situation may be different - I only offer this as a cautionary tale that these things happen, and it's wise to weigh the pros and cons of any decision you make. I don't know how you would react to doxycycline or if you might not be at risk for other problems; I can't really say much more about the tick or suspected diseases because lacking more information such as what kind of tick had bitten you and where on the planet it happened, I couldn't suggest what to take a closer look at.

    CO

    ReplyDelete

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