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Anyone taking ceftin and/or tinidazole?

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Posted 4/30/2013 2:37 AM (GMT 0)
I'm switching from azithromyicin and rifampin to ceftin and tinidazole (pulsing tinidazole, 4 weeks on 3 weeks off, ceftin twice daily).

Anyone else taking these? Any advice on what to expect?
Posted 4/30/2013 2:44 AM (GMT 0)
Lymer,

Heather took Ceftin for 5 months, and was at her sickest while she took it. I suspect that most of her symptoms were made worse by a giant herx. I had not really implemented a thorough detox program until later. We later did have compatibility testing performed, and the Ceftin was found to be toxic to my daughter. If your goal is a herx, then, according to my experience, you will find it! Be sure to detox thoroughly. Ceftin is a front line Borrelia ABX for many LLMD's.

Don
Posted 4/30/2013 2:50 AM (GMT 0)
Thank you Don! I suspected a herx would be inevitable, as my LLMD wanted to step up my treatment plan after seeing my test results and hearing more about my situation/symptoms. I didn't have much change - good or bad - from my previous 3 months of treatment. Unfortunately the Lyme Arthritis is getting increasingly worse, and he's getting concerned about permanent damage. So I'm in for a rough road, but I really want to stop some of this stuff before it gets worse. I guess that's the obvious goal for all of us!

How is Heather doing these days? If I remember correctly she was about to start college? I hope she's doing well.
Posted 4/30/2013 3:13 AM (GMT 0)
Hi Lymer,

I am on Ceftin. I have been on it for almost 6 weeks. The first month was rough. I herxed on and off quite a bit. But the past few weeks I have had some much better days. I am gaining more stamina, energy and my symptoms are not as intense. I notice that my bad days or hours I am able to push through it more, and can continue to function.

I will be starting Tindamax next, pulsing 3 days on, 4 days off. I am really hoping this helps put a dent into my treatment. I also take Monocycline and Plaqunil.

I too suffer with a lot of severe pain. I have been in treatment for 5 months. What I have noticed with the Ceftin is that the pain can be very intense, but isn't lasting as long. I get more relief. It is such a slow journey back to health.

I wish you all the best with your new protocol. Good Luck!!
Posted 4/30/2013 3:17 AM (GMT 0)
Lymer- I guess that theoretically that some negative effects would be almost guaranteed once the die-off is taking place. However, it is possible to greatly minimize the severity of your herx with an effective detox regimen. I really urge you to get on that! Please forgive my preaching, but I hate to hear that you guys are suffering!

Thanks for asking about Heather. She is as healthy as can be. I am being a perfectionist about this, but I can't complain about a single issue with her. I was a little disappointed that she had a bit of a shoulder issue with her swimming in February. Rotator Cuff issues are common for competitive swimmers. Because of that we pulled her from a big end of "short course" season meet in March. Her shoulder has been rehabilitated and she claims to be training at full tilt again, and we are excited for her to end this year strongly before she goes to college and swims. She is aiming for a big national "long course" meet in California in August.

Don
Posted 4/30/2013 3:20 AM (GMT 0)
Thanks WarriorMom! That sounds like pretty good news to me! What do you do/take for pain? I found a pain specialist that wants to work my LLMD, and so I'm hoping I can get some help to "push through" the herxing that lies ahead...lol!

I started Baclofen for arthritis pain, but its really hard on my stomach. I can't take NSAIDs, or several other meds, I feel like I'm running out of options! I think I need to up my tumeric and maybe magnesium? It's a LOT to keep up with!
Posted 4/30/2013 3:21 AM (GMT 0)
I was on ceftin for a while. It made me herx pretty badly. I took it with probenecid. I felt like it was giving me severe depression, but I've had that with other meds too so it may be a symptom and not the result of a medication.

I didn't react negatively to tinidazole. I was only on it for a week because my liver enzymes went up to high. I herx a lot worse on Flagyl, but my liver handles it better.
Posted 4/30/2013 3:28 AM (GMT 0)
Thank Summer3! I took Flagyl several months back (unrelated to Lyme-before I knew I had it), and had to stop after a few days. I was having hands down the worst anxiety attacks I've ever had...and I have a lot of anxiety!! Are you still taking abx?

Don- I'm definitely going to step up my detox. I'm trying to find what works for me. I have trouble doing the baths, I get very sick and the lyme arthritis flares. I'm doing a detox tea (Flor Essence and Dandelion Root), but I need to decide what else to add to my detox regimen. I think that's a good goal for tonight. Thanks for the encouragement! :)
Posted 4/30/2013 4:20 AM (GMT 0)
Ceftin (Cefuroxime Axetil) is good stuff if you ask me.

I had 2 to 3 weeks of very severe Herx reactions, but I eventually felt better. I only wish my infectious disease doc had kept me on it longer.

I kept a log of all of my symptoms if anyone is interested, complete with my symptoms I had before and after all my drugs so far:

https://docs.google.com/spreadsheet/ccc?key=0AoYQ3Tn3Gf7adFBmVW81YVU4NFJKUWQtYmFmNXRzaEE
Posted 4/30/2013 10:12 AM (GMT 0)
Yes, I'm still on LOTS of oral antibiotics. I have gotten anxiety very badly also. With methylcobalamin shots it's been fairly under control as has the depression. I haven't had to take any meds for those so far.

I noticed that you listed synthroid as one of your meds. I just had my thyroid tested and was looking into various options (even though I don't know if anything is abnormal yet). Did your LLMD suggest synthroid as opposed to armour or the other dessicated thyroid products? Do you feel like the synthetic ones are safer?
Posted 4/30/2013 11:19 AM (GMT 0)
I am on ceftin going on week 8. Had some herxing the first 2-3 weeks. For me it was brain fog, extreme thirst, anxiety.

I added biaxin 2 weeks ago and not feeling too bad.
Posted 5/22/2013 3:14 AM (GMT 0)
This is a bit late, but I figured I'd throw in my 2 cents.

I've been on two 60 day rounds of Ceftin with about a month in between. (500 mg, 2x a day).

Aside from relapsing after my first two month stint, I've had a positive experience with the drug. Almost no gastro issues (I take a probiotic, Florastor, twice a day) and no herxing.

My doctor did say he would not want me on it for more than two months at a time. I did some reading and Ceftin is one of the antibiotics that is most likely to lead to a c. diff infection, so do be careful.

I actually just finished my last dose of Ceftin two days ago. Fingers crossed. I'm hoping for what feels like the bajillionth time that this "is it" and maybe I'll be done with treatment.
Posted 5/22/2013 1:49 PM (GMT 0)
I just finished my 3rd month of Ceftin with Rifampin. No major herx, had some rough mental days but nothing I couldn't get thru. I take GSE extract with the Ceftin as well as a probiotic (later in the day) and I've had no yeast issues nor gastro issues. I really like Ceftin. I took Doxy before that and had to stop because I'm pretty sure I was allergic as I kept breaking out in hives. The Ceftin/Rifampin combo has been pretty easy.
I have turned a corner within the past 2-3 weeks and I've had no vision issues, no brain fog or anger issues, much better energy, Feeling pretty darn good! I hope you find the same soon!

Post Edited (Shabbychic) : 5/22/2013 1:47:27 PM (GMT-6)

Posted 7/31/2013 7:36 PM (GMT 0)
We all, obviously, respond differently to medications. In my experience, I can tell you this: I just stopped taking daily Rocephin injections. I did these for about 3 months. I became pretty well, and eventually asymptomatic. I stopped just about 2.5 weeks ago and am now pretty ill again. Arthritic joints, gut problems, extreme fatigue. My LLMD is now prescribing Ceftin, at my recomendation. I took it several years ago with very, very good results. Probably the best I'd felt in 20 years! I am hoping it will do the same thing this time. I don't believe in luck, so I'll say "God be with you, and lay His hand upon you for healing".
Posted 5/8/2014 4:45 PM (GMT 0)
I am reposting this here because I believe I originally posted it on the wrong page..sorry I'm a new member. I have had Lyme (Babesia and Bartonella) for 3 years. Originally, I thought I had early alzheimers due to severe brain fog and memory loss, along with other neuro symptoms. (I am a physical therapist and had always enjoyed good health up until Lyme). Went to 4 different docs and the last one told me to take antidepressants (I was not depressed) or get a sleep study because depression or sleep apnea was the likely cause of my fatigue/memory loss. What a joke. Finally after 8 months and worsening neuro symptoms (I didn't know what the heck was wrong with me and I was very sick and scared) I then found a LLMD who diagnosed me. Started with Ceftin 500mg and Biaxin tid. All symptoms resolved after 5 months and I stopped all meds. 6 months later my symptoms came back twice as bad (I thought I was done!!) so we restarted Ceftin and Biaxin (for Bartonella). This is when I first learned about relapsing and cyst formation around the spirochete. Symptoms improved slowly over next 6 months, (then plateaued) and we switched to Ceftin and Zithromax. I was also taking Lumbrokinase and Grapefruit Seed Extract daily. Improvement was very slow and 6 months into it we added Tindamax 500mg, 2x/day- once a week. Next 2 months, 2x/day- 2 days a week, then 3x/day- 3 days a week, up until now. When I hit the 3x/day-3x/week dose I immediately developed a swollen abdomen, bad stomach pains/cramping, a return of all of my original symptoms, brain fog, air hunger, nausea, shaking hands, light intolerance (possibly a huge herx effect) and I literally thought I would die if I kept taking the Tindamax. Doc suggested I take it only at night, 6 days in a row. Side effects are not as bothersome now and are tolerated better when I am sleeping. My goal is to increase the Tindamax to 2 pills/6 nights next week. Sorry this is a long post, but my point is that Tindamax is a very powerful but necessary drug (in my opinion)and it's side effects can be horrible. If you are having trouble as well, maybe taking it just at night would be helpful. Almost 3 years into this awful disease and I am determined to get as much of it out of my body as I can!
Posted 5/8/2014 6:39 PM (GMT 0)
Tinidazole is possibly the best cyst drug for Lyme.

My treatment has come along so well and I have cleared the infection out of most of my body, even my fingers horizontal and vertical lines are now healing and fading.

But the infection is still in my brain! I don't notice it very often and am mostly completely symptom free but just in the early morning, and it is ever so slight, but I notice there is activity of it going on in the brain.

I wonder do I need to add in ceftin? I am thinking I need to add in a good cephalosporin or is it necessary? See this is the confusing thing for me about Lyme disease, some Lyme Literate physicians say they recommend it, others say it's not necessary. Some say you need need to hit with a cell wall drug + intracellular drug + cyst drug, others say intracellular drugs still treat the normal spirochetes so you don't necessarily need the cell wall drug. I just don't know if I need it or not.

I really would like to clear this infection out, even though I get the ever so rare ever so mild symptoms, I still worry about relapse.

Some days it feels like I can count my first symptom free day, next day symptom free, so 2 symptom free days, then early morning the 3rd day that I'd hope to be symptom free I notice the ever so slight activity that takes me back to no symptom free days! Yikes. I wonder if I need a cephalosporin or not.
Posted 5/8/2014 6:40 PM (GMT 0)
I have been on a similar drug to Ceftin for over 8 months with excellent results. I have chronic neuro lyme and it has been a miracle for me. It cut right through the dizziness and cognitive issues. Hopes it works out for you.
Posted 5/9/2014 1:50 AM (GMT 0)
Ceftin has been the mainstay of my Lyme protocol and the secondary antibiotic has changed 3 times, depending on my symptoms from co-infections. I can't say if Ceftin would give you the push you need to clear the bacteria 100%, but I do know that many LLMD's often treat using a trial and error technique. What works for one person may not work for another. If you take a certain antibiotic and you see improvement, then you stay on it. If it isn't helping, you try a different one. An experienced LLMD can use this technique in a educated manner to come up with solutions during the evolution of your Lyme treatment. Also, Lyme spirochetes can adapt themselves to become resistant to long term antibiotics, which is why many docs change them up when a plateau is hit. However, I also believe that we have to be our own treatment advocates and that if you have a hunch that Ceftin would help, ask your doctor to put you on it for a month or so (if your stomach can handle it) and see what happens…see if it helps with your residual symptoms. If you don't try it, you'll never know. The fact that you are almost completely symptom free is wonderful!
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