I am new to posting but not new to lymenet. I have been reading and learning for over a year now.
I was originally diagnosed in 1996 (bulls eye rash, + WB) and treated with 10 days of doxy - not enough. I grew more and more ill over the next few years and was officially rediagnosed in December 2003. I have tested CDC positive for lyme (IgG and IgM), bartonella and babesia.
I am treated by a fantastic team of doctors in MA and a LLMD in CT. I have tried many different abx combos including IV rocephin. Currently I am doing IM bicillin shots and I just did shot #5.
My LLMD wants me to add Factive but I am nervous. I have done Levaquin in the past with no ill effects but I have read some really nasty things about this class of drugs that leaves me worried (links recently posted by Cave I think). Any thoughts?
Also, what does it mean when you stop herxing? I used to have these incredibly painful, debilitating flares - on schedule too! I was expecting a big herx from the bicillin but...nothing. Maybe a little achiness but nothing compared to before.
I definately still have symptoms though - primarily MS-type, neuro symptoms. Can you heal without herxing?
Warmly, Bluetick
P.S. my screen name is because of my wonderful dog "Scout" who is a bluetick coonhound. She is a clown and keeps me laughing. Isn't it ironic that I have a 'ticked' dog?
Posts: 98 | From MA | Registered: Dec 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi Bluetick,
I was on shots of bicillin after having a course of IV rocephin and various orals. For me the herxes were much easier; they consisted of headachey fever and fatigue (but I slept much better)for the most part.
However, I saw my greatest improvement during that course of Bicillin.
Give it some time, maybe from here your herxes are minor and you still improve. That'd be nice wouldn't it?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Blue I dont seam to herx as bad as many do-
I asked LLMD about this and was told men sometimes have little or no herx reaction-- Doc told me about 30% of men seam to be this way--
I feel as germ load is decreased the herx reaction also lowers--
I have Lyme and Babs-
This is how how my treatment has progressed--
1 -Nystatin powder-for candida I herxed for 10 days-strong- much improvement in candida-
2 Doxicycline --herxed on time cycle- headache- joint pain increase-- herxes deminished over time--
3 Alinia--Herxed on first pill in 4 hours--Very strong herx-- herx effects from 1 pill lasted 5 days-- and I could feel improvement that lasted 2 weeks--very powerful
4 Mepron-Biaxin --had a almost migrane headache for 1 day-- no other bad reaction-- Much improvement--Very good meds
5 Bactrim- Ketek-just started 4days ago- Migrane headache for 3 days-- Made me itch all over 1 day- Herxes seam to be tapering off--
When I herx a headace and heart flutters are my worst symptoms so far--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I was levaquin for a sinus infection before being diagnosed with lyme after 3 days of this medication I could not get out of bed. Finally in October I was diagnosed after a series of other test with Lyme. My MD then gave me doxy was only on it for 12 days I had a bad reaction but I was starting to walk again. She then put me on Factive it did not help at all was on it for 12 days. I did not have any side efeects from it but everyone is different. I looked it up it is good for sinus and lung in fections. I finally was put back on doxy yesterday hoping to get some of my life back, but I know that will not happen till I finally see the LLD in Jan.
Posts: 14 | From New Jersey | Registered: Oct 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi BlueTick.
I love your name and the story behind it!
Just wanted to welcome you to LymeNet.
I see you're concerned that your herxing has lessened. I'm right there with you. One wonders, "Have I plateau'd, or am I ALL BETTER NOW??? "
Having been through a laundry list of some pretty powerful drugs, including Flagyl, I'm taking the no-herx thing as "better." I'm on high-dose Amoxy and Plaquenil.
Some of the cognitive/neuro stuff might hang around a LOOONG time. Hard to know whether that means you're still infected, or whether it's just residual neuro brain stuff.
Uh, now, what was I saying...?
:-)
If there's any drug you don't feel good about--whether due to postings of our brilliant Cave or any other reason, hopefully your LLMD will understand and switch you. There's almost always a substitute. A "Thesaurus" of drugs, if you will!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Hi everyone, thanks for your thoughtful replies and your kind welcome. I will start the Factive because I did well on the Levaquin and I completely trust my LLMD but I will continue to research this class of drugs just to know what to look out for.
For me, IV rocephin was the miracle drug - I did 10 weeks of it and I wish I didn't have to stop. Hopefully I can find something that makes me feel as well.
My worst fear is that I am too late with all of this treatment and that this is "as good as it gets." I know that my knees and ankles are gone (arthritic) and I wonder if the neuro stuff will never get any better.
My LLMD is considering revisiting some of the treatments that worked well and gave me strong (esp. neuro) flares in the past. Has anyone ever tried this? Going back to a treatment?
Posts: 98 | From MA | Registered: Dec 2005
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