posted
hello everyone..I can't believe I have never found this forum before...it's great!! I was diagnosed with Lyme a couple years ago...highly positive western IGG & IGM from IgenX and started treatment, but then my insurance changed and the doctor was no longer covered so stopped after a few months (taking Plaquinel, Zithromax, Ketek, Flagyl..pulsing). I have since struggled to find any primary care doctor that is taking new patients, let alone one that is lyme literate and have been tossed around from Rhumatologists (my ANA test was abnormal) to Infectious Disease doctors to a Fibromyalga specialist. All non-lyme literate doctors seem to believe I had lyme, but it's gone now cause when they test me it comes back negative...no surprise cause they use their own labs right? So I found a lyme literate doctor in NH who i went to 1 time (not covered by insurance) to get his opinion and he suggested ceftin and gave me an RX and info to bring to my dr. started taking it, but after 10 days I ended up laying in bed crying like a baby from the pain in my lower spine, which radiated down my butt and thighs. I also had chest pain...felt like my ribs hurt, a severe headache and horrible sweats....I was really close to calling an ambulance cause the pain in my low spine was unbelieveable!!! I have since stopped taking the meds, but not sure if if was a herx or something else and if it means I shouldn't be taking the meds anymore or if I shoudl start back up. I never had a reaction like this with any of the other meds...except ketek which messed with my vision and I only took a couple times because of that. My current doctor is willing to treat me based on what I ask for, but I'm no doctor and not sure what i should do. Any suggestions?? Anyone ever have a similar reaction to Ceftin?
Posts: 9 | From Boston | Registered: Nov 2005
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posted
Hey raw, I've used ceftin before and had really good results with it...about 10 days into it i got head and neck pain which was so severe that I skipped my dose that night....but it passed and I continued with the ceftin....and started to feel really good. When you feel a bit stronger, maybe you should try to have a go at it again. But yes, absolutely sounds like a nasty herx to me...Good luck! Sarah
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I started abx treatment with ceftin -- increasing the dosage each week until I was at 2000 mg a day.
I had horrible herxes. I'd been told to expect something awful, but I couldn't have imagined this. I felt as if I had the worst case of the flu imaginable. That was the first week. Each time I increased dosage, I experienced another herx. I had neurological symptoms then, too. My thinking cloudy, moods dark.
The worst herx, though, came at exactly 28 days. I got the feeling of electrical shocks in the back of my hands, and then my entire body was paralyzed. I did go to the ER (though they didn't do anything for me).
I stuck it out, and each month, the herxes lessened in intensity. In the 2nd month, I had another bout of paralysis but haven't experienced that since.
This was all pretty scary, but I could also feel myself gradually getting a bit better. I think this is a good abx for me.
I was late-stage dx -- 9 years from rash to dx -- with pretty severe arthritic symptoms and numbness.
The thing is, each individual case seems so different. It probably wouldn't hurt to check in with your doc.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
thanks for the replies... I think I'll try to start the ceftin again. I had heard about the herx, but never experienced it before and NEVER imagined it could be that bad....it was pretty scary. I was taking 2000mg a day of Ceftin and sounds like that is a reasonable dosage from what I've read. Thank you all sooo much!!
Posts: 9 | From Boston | Registered: Nov 2005
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posted
Could you start out at a lower dose and work up to the full dose? I am very drug sensitive, and have found I do much better if I start out at a low dose and slowly work up to the full dose. Kathy
I was taking 2000mg a day of Ceftin and sounds like that is a reasonable dosage from what I've read. Thank you all sooo much!! [/QB][/QUOTE]
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
I feltthe ceftin after 3 days - 1000 per day. Had a really good die off - like that possible LOL - I could feel it go through the blood barier. I wish i could have tolerated how it aggravated my GI track but could not - only lasted 16 days on it. My herx was very intense but after I did notice improvement.
Posts: 582 | From milwaukee wi | Registered: May 2005
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posted
maybe starting off slower with the meds and working my way up to 2000mg/day would help. I'm gonna try to start the ceftin again this weekend and see how it goes...getting general blood work done as well to make sure there isn't anything else funky going on. So...does the herx usually happen each time you start new abx? or is it just a sign of dieoff that can happen whenever you're on abx? Thanks again for all the support!!
Posts: 9 | From Boston | Registered: Nov 2005
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posted
I am experiencing the same now, but not as severe. I started Ceftin last Fri. at 1000 and went up to 2000 on Monday
I had immediate indigestion issues which seem better with a bunch of probiotics, way more than I needed with Doxy 500. I felt better on the doxy, but am banking on this being an initial herx.
My lower back is aching too, without injury or strain. My head is clear though, maybe clearer than doxy 500. Likely too early to tell.
Stick with it if you can, I am planning too.
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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