Lyme treatment

[cjsmith]

We're going to hit me with Biaxin (clarithromycin) at first, and I'll need Diflucan (fluconazole) to keep yeast levels down as well as a massive probiotic (way beyond yogurt) to make my gut keep working. I will need to log pain levels, fatigue, sleep time, and anything I find unusual -- extra aches, flulike symptoms, anything. Unless a Herx reaction is too awful to bear, I'll see the doctor again in six weeks.

We discussed one antibiotic option known to cause bad sun sensitivity. My doctor said she was reluctant to use that one in summer. I said "Oh, I'm never outside. I can't walk far or bike, so I drive everywhere. I can't run or hike or go backpacking. I work in an office all day. Sun sensitivity really isn't a big problem here." And she said "But that might change," and put me on Biaxin. That was really weird. The thought that I might enjoy the outdoors again -- this summer, even -- is just alien. I'm having a hard time picturing it. I can only barely remember what that was like once upon a time. Maybe I am the zoo tiger who, when released in the wild, paces a space the size of his cage for a long time.

I fill my prescriptions this evening.

I'm trying so hard not to get my hopes up. The crashes are always so painful. It took me too long to reach any sort of mental and emotional equilibrium about this stuff in the first place; I don't want to have to go through that again.

Comments

[dafydd.livejournal.com]

*hughug* May your treatment be painless, and your recovery miraculous.

[cjsmith.livejournal.com]

Thanks! :) And may it be Not Fiendishly Expensive, too. :-)

[portia.livejournal.com]

You so need to go on this show (http://health.discovery.com/fansites/mystery-diagnosis/about.html) and tell your story!

[cjsmith.livejournal.com]

That would be kind of fun, actually, if I could recreate enough detail.

There's a chance they wouldn't touch it. I'm learning that within the medical community, Lyme is very political.

[ladycelia.livejournal.com]

I'd never heard of a Herx reaction before this.

So, they believe that treating the Lyme will actually help your feet get better? That would be marvelous.

[cjsmith.livejournal.com]

My doctor is nearly certain. It's so weird to have someone be sure.

I remember the first time a doctor told me a diagnosis and I argued him out of it. Well, okay, all I said was "it seems unlikely that _____ given ___________" and he said yeah, you're right, that makes no sense. I felt like I was standing on a cliff edge that was crumbling: a slow but profound uh-oh.

But anyway, I doubt I could argue this lady out of anything. :-)

[quasigeostrophy.livejournal.com]

A probiotic is a good idea - I've had Biaxin in the past, and it's carpet-bombing. Good luck with the treatment! I've got fingers and toes crossed. :-)

[cjsmith.livejournal.com]

HA! Carpet-bombing is a great way to put it. One reason this was chosen is to kick out any other opportunistic infections that often come along with Lyme. Just because I tested negative for, say, B. henselae (free antibodies) doesn't mean I don't have it.

Thanks!

[chinders.livejournal.com]

If it does work, how long should it take to show signs?

[cjsmith.livejournal.com]

A good question I'm not sure I know the answer to. The doc put it this way: 80% of the patients she treats for Lyme have a definite Herx reaction in a week or less, indicating at least that they're on the right track. That would be one sign. Five percent never respond in any way, so they're on the wrong track. The remaining fifteen percent just show steady improvement in their symptoms. I'm guessing that's the six week mark where she wants to see me again; if I don't show any improvement then, maybe we're barking up the wrong tree.

Hey, did you know you could edit a comment just to change the userpic? :-)

[windsea.livejournal.com]

Good luck! I had Biaxin way back when - I think it was 1996, when I had a double leg infection -- both cellulitis *and* an abscess deep within a torn muscle. It was an ... interesting time.

Biaxin's not just carpet-bombing, it's carpet-bombing followed by Agent Orange :-).

But hang in there. The cure WILL be better than the disease!

[cjsmith.livejournal.com]

Biaxin's not just carpet-bombing, it's carpet-bombing followed by Agent Orange :-).

Oh boy! Sign me right up, because that's just too much fun to miss! :-)

Thanks for the encouragement from someone who's "been there".

[lesliepear.livejournal.com]

I've had Biaxin for a sinus infection (probably a smaller dose).

I ended up with insomnia from it. I've asked to not take it ever since.

So hoping this will help you!

[cjsmith.livejournal.com]

Mmm, interesting to hear. That's where the sleep meds might come in; I'll tell my doc if I start leaning on the Sominex. Bummer that it hit you in such a bad way!

[hopeforyou.livejournal.com]

I have been on Clarithromycin for over 21 months. I still have Lyme detectable in my blood. I still have symptoms, but so far I've been placed into the "slow improvement" category, just really really slow because I have an immune deficiency and other issues.

I have no idea how long I'll have to be on this stuff. If you've been infected for years, it can be a long time.

One question for you: Do you know if you have any co-infections like bartonella or erlichiosis? Because if you do, those need to be treated first before treating Lyme effectively.

I'm wondering if you can tell me who you're seeing and if they're in San Francisco? I'm going to a clinic there and have to pay a lot out of pocket, so I don't see my specialist that often.

[cjsmith.livejournal.com]

Isn't the test free antibodies, ie, you can test positive after you've eradicated the bacteria? Isn't there no way to test for the bacteria itself? But you do still have symptoms... I'm new at this, so set me straight if I'm confused. Maybe the level of free IgG or IgM antibodies drops off when there are no more bacteria to hit?

I tested negative for bartonella, but of course, that too was a free antibody test and thus won't show positive unless I have both been exposed to it AND have some extra antibodies not currently involved in fighting. Doc says that test has a lot of high negatives. She selected the carpet bomb because it is known to hit both.

I'm seeing Dr. Deborah Metzger at Harmony Women's Health in Los Altos. I too will be paying a big pile out of pocket. Who is your specialist? Is he or she good? I have a lot of faith in Dr. Metzger, but she and I are still pretty new to each other, all told.

[lisa-marli.livejournal.com]

Good luck. May this be the magic bullet that makes you better.
*hugs*

[cjsmith.livejournal.com]

Thanks! :-)

[kimatha.livejournal.com]

I'm trying not to get my hopes up on your behalf, too.

The antibiotic regimen sounds pretty harsh. Almost like chemotherapy. Sounds like you'll have lots of good TMI to post about.

[cjsmith.livejournal.com]

I think it's expected to be pretty harsh, yeah. In a way it's almost like the opposite of chemo: those folks go into a state where they just don't have many white blood cells (neutropenia - chemo kills off anything that multiplies fast) so they have to avoid crowds, avoid raw foods like salad, etc; while me, I doubt I could catch ANYTHING bacterial at this point. :-) But yeah, rough on the body.

I took the first antibiotic and antifungal last night, and this afternoon I can take the first probiotic. Good thing, too. I can feel the TMI starting up.

[aelfie.livejournal.com]

Good luck!

Are you also starting a yeast control diet? (Since you mentioned one drug for keeping yeast levels down.)

[cjsmith.livejournal.com]

Yes indeedy. The doctor was very insistent on that. THERE'S NOTHING TO EAT! It's amazing how much of this crap Americans eat all the time. I bet I won't ever participate in another company lunch.

[busysuzy.livejournal.com]

I understand not wanting to get your hopes up...but still! How potentially exciting! I'm keeping all my crossable parts crossed for you.

Good luck and keep us posted!

[cjsmith.livejournal.com]

Thank you! :-) I sure will. Everyone will likely get tired of me posting about this. :-)

[sharya.livejournal.com]

Good luck!

When will you find out about the results of the tests?

[cjsmith.livejournal.com]

Which tests, the bone ones? I'm not sure I'll ever find out unless the NY doc thinks they show something significant. He should have the results probably by about now. I'll phone his office in the next few days and ask them to fax me a copy.

[airporter.livejournal.com]

Though I hear you about not getting hopes up, the treatment is worth a shot, hon. I'm living proof that the hopeless can change (err, that a hopeless situation can change...)

[cjsmith.livejournal.com]

That's the thing -- there's never absolutely zero chance of a fix. It's merely a question of how much time, money, and emotional energy a person is willing to spend searching. Every time I got tired or broke, I stopped; now I'm starting again, and lo, I have found an intriguing clue. :-)

Oh please please please!

[shoutingboy.livejournal.com]

I'll light a candle for you. And I'll get my hopes up on your behalf, so you don't have to.

Re: Oh please please please!

[cjsmith.livejournal.com]

Thank you!

[composerjk.livejournal.com]

Which probiotic?

Good luck with it.

[cjsmith.livejournal.com]

Thanks!

It's Klaire Labs Vital-Immune Biotic. Oddly enough, there are a stunning number of different products with the name Vital-Immune :-) so it took me a little while to find the right one!

Do you have suggestions for good ones, as well?

[lkeele.livejournal.com]

What if I keep my hopes up FOR you? Then you don't have to.

Fingers crossed, my dear.

[cjsmith.livejournal.com]

You are totally allowed to do that! :-) Thank you. Hugs, habibti. (Wait. That's Dr. Habibti!)

[tiger-spot.livejournal.com]

I know what you mean about not wanting to get the hopes up. We can come and distract you with non-hope-related busy-ness, if that would be helpful.

[cjsmith.livejournal.com]

That would be fantabulous! Except for Saturday daytime and Monday dinner, I'm at loose ends all weekend, and would greatly enjoy being distracted. :-)

[apparentparadox]

I'm just trying to wrap my head around you keeping track of pain levels. Given how much pain you've been in over the years and just kept right on moving & smiling & stuff, I'd imagine that your pain tolerance is off the chart! I can easily imagine you just not even noticing an extra ache, for example.

[cjsmith.livejournal.com]

Ha! I must give the impression of being a total trooper, and I'm really not. I notice. I get bitchy -- that's one major reason I quit tape group, actually; I was a little shit, and I couldn't stand myself any more. I complain bitterly, until Rob tells me to shut up and get off my darn feet already.

However, me being organized enough to log everything in one central place is an amusing image. I thought of carrying a little notebook, and then I decided LJ private posts were the obvious way to go.

[callyperry.livejournal.com]

Oh, wow! I never thought I'd be thrilled to hear a friend had Lyme disease. May the treatment be effective, the Herx minimal, and the symptoms history.

Cally, just catching up after her last final exam of the term

[cjsmith.livejournal.com]

I never thought I'd be thrilled to hear a friend had Lyme disease.

Yeah, isn't it crazy? I was telling my sister about the fact that a Herx reaction would confirm we're on the right track, and she ended the phone call with "Good luck! Hope you get sick!" :-)

[mbumby.livejournal.com]

*Fingers crossed for you*