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

[reedrover]

Dr. Les Gavora, in Fairfax VA, treated my Mom for Lyme's back when no one really believed it was in Virginia. As I recall, the treatment was a month of tetracycline, months and months of Prednisone, and many months of physical therapy to regain control of her partially paralyzed left side.

A friend is currently [still] undergoing treatment through Fauquier Hospital.

Feel free to drop me a direct e-mail to reedrover at livejournal dot com (or give my info to your friend) and I'll do what I can to help make connections for him.

[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.

Lyme

[(Anonymous)]

www.ILADS.org is the best source for early and late stage Lyme Disease and the other tick borne diseases. Best of luck!

[amm-me.livejournal.com]

My brother had Lyme disease that he missed in the early stages, last fall -- diagnosed after it affected the nervous system and he lost control of the left side of his face, very scary. Treatment, out of a hospital in Boston, involved daily IV antibiotic for a month. After the first week he got fixed up with an IV lock on his arm covered by elastic netting, that he could use to medicate himself, rather than go into the hospital every morning.

Sorry, I don't know what hospital, doctor, etc.

Treatment was entirely successful. After a week or so he began regaining control of his face muscles, and he is fine now.

Lyme Treatment

[(Anonymous)]

I had Lyme with the neurological symptoms (facial paralysis, optic neuritis, etc) way back in 1989. I ended up at Hopkins (in Baltimore) in the neurology ward for 2 weeks of IV drugs--ceftriaxone. I have had no real long term effects except that the family trait arthritis kicked in way early. My doctor at Hopkins has, of course, moved on to another hospital. But, as you have found out, Maryland is a hot-bed of Lyme and I am sure that Hopkins has a program (they have a program for everything, after all).

Thank you and a follow -on...

[kinzel.livejournal.com]

OK gang, thanks for the pointers and info.

Where we are now:

I have forwarded the information/links you gave me, and...

it turns out that a Lyme support group is available at our victim's workplace, a workplace with an excellent connection to a world-class hospital. Apparently everything so far is covered under prevailing health insurance as well.

So far the joint pain, and "memory-pains" of old injuries seems to be on-going problems, as well as a recurring fever.