Lyme disease pointers please

[kinzel]

In the midst of all the celebration of my mother and step-father's 50th anniversary we discover a family member(neither of us), is diagnosed with AND suffering very much from Lyme disease to the point of being unable to travel 8 miles to be part of an event months in the planning.

We are looking for non-generic Lyme disease information, that is, for information and resources proven useful for someone you know, if not yourself. The victim is male, in his early fifties, generally an active and rugged out-door type with wide ranging interests... who is recently reduced to "hurting in places he didn't know he had" ... as his son reports it.

Generic information or resources localized for Maryland or the Mid-Atlantic might help as well.

We're on the road, have had a very mixed connectivity weekend, and may not be able to check in again until Tuesday or even Wednesday.

TIA!

Steve

Comments

[jerusha.livejournal.com]

These are generic, but comprehensive. I have never had Lyme disease myself, but many people I know, including my brother, have had it. (My brother's course included Lyme arthritis; it was also before antibiotic therapy was standard-of-care, as it has become.)

The CDC page on symptoms (http://www.cdc.gov/ncidod/dvbid/Lyme/ld_humandisease_symptoms.htm) of Lyme disease.

The Guidelines (http://www.journals.uchicago.edu/doi/full/10.1086/508667?cookieSet=1) on prevention and treatment of Lyme Disease, from the Infectious Diseases Society of America. This is written in pretty dense medicalese; the guidelines boil down to "10 days of doxycycline for initial infection; a month of doxycycline for arthritis or for symptoms that persist after the first 10 day course; various other options including IV antibiotics for some of the rarer-and-scarier complications like infection of the heart and/or nervous system; alternative antibiotics for people who can't take doxycycline." I'd be happy to provide English/medicalese translation services, if needed; username@livejournal works if you'd prefer to take it out of comments.

IDSA, undertreats

[(Anonymous)]

I recommend NOT following the IDSA guidleines, they are being re done as we speak. The ILADS guidelines are more complete and accurate. They can be found at www.ILADS.org. Thanks.

Re: IDSA, undertreats

[jerusha.livejournal.com]

The ILADS guidelines do advocate more aggressive treatment, over a longer period of time. I am less comfortable with their justification of their guidelines; however, both ILADS and IDSA acknowledge that there have been very few, if any, trials that generate high-grade evidence for any particular treatment course. (High-grade evidence, in this case, means "randomized control trial". The next-lower grade of evidence is "trial evidence from well-designed and -conducted studies that are not RCTs". Most of the recommendations, from both ILADS and IDSA, are Grade III evidence, which is "expert consensus". In this case, after reading through both sets of guidelines, it's apparent to me that the diagnosis and treatment of Lyme disease, both acute and chronic, is an evolving field in which it's apparent to me that experts disagree.

My inclination would be to treat the IDSA guidelines as a minimum level of treatment; if your family member is still having Lyme-related symptoms and/or difficulties, perhaps more agressive treatment is warranted. Although I am somewhat concerned that ILADS guidelines are inclined more towards over-diagnosis and over-treatment, in the absence of conclusive data one way or the other, which set of guidelines to follow must be left to the judgement of the individual patient and practitioner.