posted
Went off and early July. Hadn't herxed since Sept 2011 when first diagnosed. No changes in symptoms, no improvements either.
Eye headaches (which I've had daily since Jan 2012, post eye surgery) intensified. Dr did 4 days IM rocephin to see if i would have a reaction. No herx, no improvements again. I hadn't had any abx for the previous 6 weeks. Dr thinks because there was no reaction that Lyme is no longer an issue.
My orbital pain is debilitating right now. After treating Lyme for so long it's strange to be thinking that it isn't causing this. Tinnitus is worse too. I think all my cranial nerves are yelling at each other. I see the neurologist tomorrow.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
I'm already on Lyrica. Not that I like taking meds, but what should I know from your comment? I've also been trying indocin, amerge and dexamethasone (yuk, steroid) Nothing is helping and my tinnitis is worse.
I've been getting botox treatment for the orbital pain. They were helping a little but I was worse after the last round.
I'm suspecting a condition called trochleitis or primary trochlear headache. It's treated with a steroid injection into the area. Oh joy.
It's just odd to me that this might not be Lyme anymore. That should be a good thing. I guess if I did react then maybe I would have more hope that whatever this is can be treated.ugh. I'm just afraid I'll never feel better.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
I just don't do well on any of those drugs. And if you ever decide to get off of them, it is H, E, double hockey sticks.
I was kind of glad I only lasted 3 weeks on Lyrica and Cymbalta.
Neurontin is not quite as bad.
I sure hope SOMEONE can help you!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 95647 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Some people just get better and don't herx, or stay the same and then react to a med several months after starting.
It took my support-group leader 7 months to finally react to rocephin.
"Dr thinks because there was no reaction that Lyme is no longer an issue."
I disagree. Just because there's no "noticeable" herx doesn't mean you might not have something.
A herx just rules something IN, not something OUT, in my experience.
For example, I was taking a very heavy dose of artemesia for babesia (I've never tested positive, but have symptoms). I had no reaction and I took a ton for 8 months.
I didn't start making progress until I went on a high dose of malarone and mepron. No herx.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I agree with Judie.
It took 7 months of 4g daily IV rocephin to see improvements.
But when they arrived, it was like a jet plane. Up up up up better.
Fantastic.
IM is slower release, whereas IV is a fast hit.
I would suspect one would not herx dramatically, ie "the wall" when on IM just because of how it is relesed.
Not having done IM I can't be sure but it is slower than IV.
Hmmmm have you treated bartonella?
Notorious for eye issues and eye pain. Notorious.
Sorry you are struggling with this. Pain in the head is a million times worse than body pain.
I tried botox also-it made things worse. I think the toxin aggravated the inflammation in my body.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I think I treated bartonella a long time ago but I don't remember for sure. I'm thinking of doing Buhner's treatment to see if that makes any difference.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
I didn't think the im's were working. I felt great on all four days. Then I started to herx, but I wasn't sure if I was sliding back b/c the medication wasn't working or if it was a herx/
I told a friend I really needed another month to tell if I was still improving...However, people around me said no...there is a marked improvement this month.
But each week with im's I don't feel anything until the end of my 4 days
desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Your on oral Dexamethasone? I was on that post surgery for 4 months and it took my infections to a whole new level......Dexamethasone is like crack for Lyme. Be careful...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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