Log in

10 February 2011 @ 01:30 pm
Lyme Disease  
This article is very good: http://www.prohealth.com/library/showarticle.cfm?libid=8441

It also describes exactly what I'm experiencing.
I was infected on 9/11/2010.
I was diagnosed in mid October.
I was given a four week course of doxycyline, 100mg, 2x day.

My symptoms worsened for a few days,
Then the rash went away.
The minor joint pains went away.
The random facial tightening went away.
(It was never palsy, just minor and random,
And I kept thinking I was imagining it.)
The headaches went away.
The fatigue/exhaustion got better,
But it never went away.
My treatment ended in mid November.

Starting in mid January,
Just two months later,
The headaches came back.
The fatigue/exhaustion got worse,
More or less to the point it was before.
My facial muscles randomly tighten again,
But I have still never suffered palsy,
And I keep thinking I'm imagining it.

Relevant excerpts from the article:

Once any other symptoms appear, the treatment of Lyme Disease
for only 2-4 weeks is associated with frequent failures and
relapses (8, 10). Our initial experience suggested that a 3 month course of tetracycline was associated with a higher success rate(8).

Once treatment is initiated for patients beyond the earliest
signs of infection, their symptoms frequently increase during
the first several days, or even for the first several weeks of
therapy. For patients with preexisting symptoms of more than a
few months, relief of any of their symptoms may not occur until
after 4-6 weeks of therapy (8, 10). Typically, there are short
periods of relief, followed by relapsing or migrating symptoms;
with continued therapy there are longer symptom-free periods.
Some arthralgias may require 3 months or more to resolve, and
fatigue may be the last symptom to disappear.

The preference for tetracycline evolved because of the large
number of failures that were noted in patients who had been
on ampicillin and doxycycline. Patients generally had some
response to doxycycline, but it was usually not complete, nor
long-lasting. Tetracycline may be more effective than
doxycycline simply because of the greater dose, i.e., 100mg
of doxycycline twice daily is not equivalent to 500mg of
tetracycline three times daily; also, doxycycline is highly
protein-bound, compared to tetracycline, which could limit the
availability of free drug to diffuse into tissues and cells.

Some physicians use doxycycline at doses of 300-400mg daily to
try to achieve a successful result. A strict comparison
between doxycycline and tetracycline has not yet been
made. Minocycline has also been used by some physicians, with
varying success, but faces the same issues of dosage and
protein binding.

Seriously, this disease is absurd.
Did you know that taking the Lyme vaccine,
When you've had Lyme in the past,
Causes the disease to reactivate?

There are also over a hundred documented symptoms,
None of which are guaranteed to be present.

Also, she said the tests in December came back negative,
But the patient web gateway has my results as positive for that test.
I was assuming she was looking at different information,
But I wonder if she wasn't.
Yay for working with temp doctors while yours is away =\

Anyway, time to bug my doctor for new treatment.
It was only the initial test that came back positive,
Which might mean nothing since it is often false,
But I still never recovered from the symptoms.
I want a three month course of tetracycline.

The best part?
It looks like tetracycline doesn't interact with NuVigil,
Whereas doxycycline did.

By the way, for your amusement -
My doxycycline instructions were:

"Take twice a day twelve hours apart,
Do not lie down for at least an hour after taking a dose.
Take with a meal, but not three hours before or after eating dairy,
Do not take within two hours of taking your narcolepsy meds
(which must be taken in the morning with a meal),
And do not take within two hours of taking Prilosec
(which also should be taken with a meal,
and also can't be taken within two hours of the narcolepsy meds)."

Those were the best directions ever.

Why can't I be bit by the awesome ticks,
The ones that give radioactive powers,
And a propensity for shouting about spoons?
Current Mood: ticked
ledeirledeir on February 11th, 2011 04:19 pm (UTC)
What I've always heard about lyme is that it doesn't get cured, it just goes dormant... But that could be a rumor...

Its a nasty condition...

So I wish you good luck.
Peter Cooper Jr.petercooperjr on February 11th, 2011 06:43 pm (UTC)
Living in the woods as I do, it's pretty much a given that almost everyone you know might get Lyme at some point. I think that the people I know who got it (both my parents and my wife at least) caught it early enough that the treatment (I don't remember the specifics of the treatment) seems to have taken care of it.

So, best wishes. Lyme can be pretty terrible.
Nyrennyren on February 11th, 2011 07:10 pm (UTC)
Thank you.
coriolinuscoriolinus on February 11th, 2011 09:42 pm (UTC)
The one thing which would make your doxycycline experience more absurd would be if, as part of a double-blind setup, you were actually following all those instructions for a placebo.
Nyrennyren on February 11th, 2011 11:04 pm (UTC)
Ha. I felt like I was being presented with one of those logic puzzles. "If the user wishes to get eight hours of sleep and eat all meals at least four hours apart, at what times of the day may he eat a cheese sandwich?"