ESR What now?

[Lizz]

I've been on minocin since mid-2007. I switched up to a lyme protocol last May with mino, zith and flagyl with plaquenil. I stopped taking NSAIDS because I'm anemic. I'm very stiff and sore in the morming, my right knee bad, shoulders ache at night and neck bad. Lately, I've had pain in both ears which feels like an earache I get mainly at night when my head hits the pillow. I just had some limited bloodwork done through my gp and was shocked to find my ESR was 107! Really high, the highest it had been before was in the 70's.  No wonder why I feel the way I do! Does anybody have any impressions on this after being on the AP for so long? I've tried all the non-responder stuff except bio-identical hormones which I will pursue. Am I herxing, or what? I'm really depressed by this, I don't know what else to do except go for a different drug to get the inflammation down. Any ideas?

[Maz]

[user=48]Lizz[/user] wrote:

Does anybody have any impressions on this after being on the AP for so long? I've tried all the non-responder stuff except bio-identical hormones which I will pursue. Am I herxing, or what? I'm really depressed by this, I don't know what else to do except go for a different drug to get the inflammation down. Any ideas?

Hi Lizz,

A few things come to mind:

1. Hypersensitivity issues – will send an article to you in PM (transcript of Dr Brown talk). Perhaps you could ask your doc about a washout period and re-starting your protocol on a lower, pulsed doses (or a new one – see #2)? Also using washout period to do some good detoxing and gut healing.

2. Candida/leaky gut issues? Could also ask about cycling out of current protocol for a month or two and switching to diflucan and weekly bicillin IM shots.

3. Drug-induced lupus (aka DILE) from minocycline. It's very rare, but simple bloodwork can be done to rule it out (see my progress thread). From personal experience, any significant worsening after a year or so of minocycline should be automatically checked for DILE as a precaution.

4. Some folk respond better to Tinidazole than Flagyl, which can cause intolerable herxing.

5. What pain relief are you using? Have you tried a natural alternative, such as boswellia?

That's about all that comes to mind now, but maybe others can offer some other insights for you that might also be worth thinking about.

Really sorry to hear you're still going thru the Lyme wars, Lizz. I understand…my first year was pretty rough, too. My right knee is still being a beast, too, but I just started high dose Moxatag, an extended release amoxicillin, which is clearly causing some major herxing….fortunately, just minor flu-like aches and pains elsewhere, but this one knee does not like the new protocol one bit….I'm 3 years in now and still working at it, but streets ahead from where it all began.

Peace, Maz

 

 

[nspiker]

Maz stated

1. Hypersensitivity issues – will send an article to you in PM (transcript of Dr Brown talk). Perhaps you could ask your doc about a washout period and re-starting your protocol on a lower, pulsed doses (or a new one – see #2)? Also using washout period to do some good detoxing and gut healing. 2. Candida/leaky gut issues? Could also ask about cycling out of current protocol for a month or two and switching to diflucan and weekly bicillin IM shots. 3. Drug-induced lupus (aka DILE) from minocycline. It's very rare, but simple bloodwork can be done to rule it out (see my progress thread). From personal experience, any significant worsening after a year or so of minocycline should be automatically checked for DILE as a precaution. 4. Some folk respond better to Tinidazole than Flagyl, which can cause intolerable herxing

Lizz,
I'm so sorry you're going through such a rough time.  Maybe Maz is on to something and you may have drug induced lupus.  I'm remembering that you had such a negative reaction to IV clindamycin.  I don't know if there is any correlation between clindamycin and minocin, but it's worth considering.  Also the leaky gut issues may be contributing.  Either way, your body seems to be hypersensitive, as many RA patients experience.

I was on the lymenet website and ran across this discussion, and thought it might have something to do with your ear pain.

http://www.lymediseaseaction.org.uk/conf2007/burrascano1/img27.html

You have been at this long enough, and should be experiencing some kind of improvement.  Feeling lousy and knowing you are stuck is such a helpless feeling.  I hope you can get to the bottom of this soon…..

nancy

[Lizz]

Thanks Maz and Nancy, I'm going to do a wash out for at least a week and talk to the doc. Something's gotta give. My ears hurt but they're not red, they are whitish, I think the pain is radiating up from my neck, or it's some wierd sinus thing. I wish I wasn't allergic to penicillin, so many times I've wanted to take it! I wish you both the best with your change-up tx and that you're both feeling better soon!

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