acute? vs. early disseminated??

[tanzi2u]

I posted some of this on another forum under a different name, so you aren't going crazy if it is vaguely familiar...

Last month my spouse was hospitalized for an atrial fibrillation (family history of it), and developed high fever, sweats, chills, and a nasty headache. I discovered the Lyme rash and the cardiologist started 100mg doxy, twice a day for 3 weeks. The arrogant IDSA duck, quoting guidelines, wouldn't up the dosage, and said that 2 weeks was plenty for acute Lyme.

Fortunately, the hospitalist the next day (and an ID doctor, to boot), disagrees with those same "guidelines" and agreed to our request for 200mg doxy twice a day for 6 weeks. (He prescribed the 4 weeks, and talked to the PCP for the following 2 weeks). This doc only works in hospitals, I checked.

So far so good, 'Cept here we are at the 28 day juncture and spouse has had a stiff neck (sometimes a bit better, sometimes not), and now has a nasty headache also.

So this is looking like to me that it isn't a simple case of acute Lyme, but it has disseminated??? Now what?

[enochroot]

Hard to say - which is what's so distressing about Lyme!
You may want to look into a month of IV - others here are much
more knowledgable on this. My best wishes on the outcome!

[cobweb2]

I personally believe in the practice of treating for two months past any symptoms.

Also-I know most people need a 'cocktail' og antibiotics-for instance- one month of treatment only sends the buggers underground.

I was grateful to pulse flagyl in with my protocol.

I also think once you have any symptoms beyond an attached tick or bullseye-that it has disseminated.

I don't even know how I would define 'acute' since it seems that as soon as the bacteria gets into your system it disseminates.
I would think of it more as 'early dissemination' or 'late dissemination'

You still want to bombard early dissemination until all symptoms have cleared so it won't become late dissemination.

and I didn't start really feeling like I had turned the corner until co-infection Bartonella was addressed with Rifampin.

[LymeEnigma]

It sounds like the disease very well could have disseminated. My first signs of disseminated disease were stiff neck w/headache, flu-like illness, achy joints, and more skin rashes. If your husband's illness has disseminated, he needs to find someone willing to prescribe more antibiotics. Two months of doxycycline did not eradicate my Lyme, as evident by the new wave of EM rashes that cropped up after about a month of finishing treatment; I wish I had been more insistent, back then, about getting more treatment. Maybe the hospital infectious diseases doctor who increased your husband's doxy knows someone he could refer him to?

If at all possible, your husband should also get co-infections ruled out, as they can complicate treatment.

I hope your husband is able to take care of this without long-term repercussion.

[tanzi2u]

At my insistence, the hospital did run a few tests: babesia and erlichiosis (chaffiensis(SP?), not anaplasma). Both were negative, but could it have been too early to tell?

The ID docs both said he had an acute infection. I always thought of it as being acute if there was a rash and nothing else, as soon as you get other symptoms, it is disseminated. But then again, I am just the spouse who reads the internet too much.

He sees 2 specialists this week (a-fib cardiologist and PCP - his regular cardiologist will be of no help, we already know that.) Wish us luck.

[LymeEnigma]

Good luck on your husband's appointments.

Unfortunately, it seems like there are just as man opinions on Lyme disease as there are doctors. I would not trust one doctor's opinion without first backing that opinion with numerous credible sources. I made the mistake of listening to way too many "educated opinions" before my disease went disseminated, and by the time I finally decided to do some fact checking I was in late-stage disease.

If there are any indicators that the illness has gone beyond dermatological, then it has disseminated ... and you cannot read too much online, as long as you pick your sources wisely.