HealingWell
Search Close Search
☰

Scared of Cipro! Help! Need advice.

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/12/2016 9:55 AM (GMT 0)
Hi All,

Symptoms resurfaced after a VERY brief respite following 2 years of treatment. Did get two new tick bites in early March which might have set off the relapse. Following a standard Western Blot and other testing I've shown positive for Babs, negative for all other co-infections. Three positive Lyme bands. Doc put me on Doxy following bites, then added Azithro and Plaquenil when I continued to decline. Following the test results, and a discussion with my naturopath which made us suspicious of Bart, doc called in Cipro, more doxy and more Plaquenil.

I've done some reading on the Cipro and, aside from the potential for Serotonin toxicity due to the Cymbalta I'm taking (which doc did warn me about--told me to take Cymbalta every other day), I'm very afraid of the Cipro. There are so many horror stories. I'm also hesitant to continue Doxy now that we're entering the summer months. Doc is usually somewhat open to suggestions. So what I'm looking for is:

Opinions about Cipro--am I being silly to refuse to take it?

Suggestions for combinations that might hit Bart without subjecting me to sun sensitivity and Serotonin toxicity. I'm allergic to Sulphas, which just complicates things further.

I'm just looking for suggestions to bring up to the doc, in the hope that we'll find a combo we can both feel comfortable with.
Posted 5/12/2016 11:23 AM (GMT 0)
I've been struggling with a stubborn case of Bart or a BLO. Over a year ago we tried Lavaquin, and yes I was aware of the risks, but on 19th day I developed tightness in my right Achilles tendon and stopped taking it. I eventually thought it was under control and I weaned off ABX, but relapsed several month later.

Next round of ABX this past Sept I started a Cipro, plaq, and mino combo with CSA blend. I had no issues with the Cipro, and stopped it just last week. While on Cipro take a double dose of Magnesium. Double up a week or so before starting.

Maybe replace doxy with mino and see how it goes.

I'm now on Alinia full time, and pulsing Ceftin and Bactrim. 2 wks on/off.
Posted 5/12/2016 11:26 AM (GMT 0)
Hi notquitesoscared,

Follow your gut instincts. Personally I would not take Cipro (I had taken it many years ago before I contracted lyme) after a dentist prescribed it for a root canal he had done and guess what? After 2 days of taking Cipro I got the worst yeast infection!

My mindset is that there are so many better alternatives to conventional antibiotics that really work (I am proof of this) without the side effects as well as not compromising one's immune system and damaging one's gut.

Just my thoughts,
Denise
Posted 5/12/2016 12:43 PM (GMT 0)
Rifampin seems to be "the" drug of choice for most for Bartonella paired with either a tetracycline (Minocycline, Doxycycline) or a Macrolide (Zithromax, Biaxin).

I've been fiercely battling Bartonella directly for almost 4 months and the Rifampin has done wonders. I too was given Cipro (along with Rifampin) and it was too much for me. Cipro also gave me nasty numbness in my toes so I had to stop. If you can tolerate Cipro it can be very effective.

My opinion, ask for Rifampin along with Biaxin. There are quite a few doctors where this combo has been proven to be the most effective. When I was on it for a month I herxed like mad so I know it worked for me at least and I was on all sorts of abx's for a year prior going after Lyme/Babesia with little improvement.

Oh I'm also allergic to Sulphas ;)
Posted 5/12/2016 1:36 PM (GMT 0)
I took cipro years ago and it caused my ankle tendon to become weak. I didn't know that was a result of the drug at the time, but it came up at one of my appointments with my ND one time and she told me never, ever, ever to take it again no matter what.

My ankle weakness has gotten better but has never gone away and I have occasional pain in that tendon still.

My suggestion would be to see if there is an alternative - you may never have issue with this particular drug, but what if you do??

Jenny
Posted 5/12/2016 2:58 PM (GMT 0)
Thanks for the input, all. Between your comments and my gut feeling, I'm not taking the Cipro. I just called the doc and asked him to consider Rifampin and Biaxin. Fingers crossed.
Posted 5/12/2016 3:18 PM (GMT 0)
I am supposda start infusing iv abx ..i cant touch the floroquinalones due to a achilles tear a few years back.i am scard ...some things cant be undone...i took bactrim and had a sulpha allergy and havent been right since ...i hate being scared
Posted 5/12/2016 4:28 PM (GMT 0)
So much is scary about these infections, right, Bluelyme? I'm so tired of it all...
Posted 5/12/2016 5:44 PM (GMT 0)
Yay! Doc said OK to the Biaxin and Rifampin. Don't have to take the scary Cipro. If anyone needs it, I've got a 30 day supply. LOL Thanks for the advice and wish me luck!
Posted 5/12/2016 6:24 PM (GMT 0)
Great news! Whats the dose and daily schedule? I've heard of Rifampin being taken 1x a day (2 pills) in AM and Biaxin 1x day (2 pills) in PM or spaced out 2x a day. Ramp up slowly this stuff can hit you hard. That is spend a week taking only 1 Rifampin in AM and 1 Biaxin in PM then go to the full dose.

Keep us posted!
Posted 5/12/2016 6:27 PM (GMT 0)
good - you're starting a protocol.

You should start with one - biaxin...at least for a week..before adding in Rifampin. maybe first few days just do biaxin at half dose.

In fact one of the Bartonella 'experts' - Dr. M. - said on his webinar - to do biaxin for a month (or maybe it was two months) and then add Rifampin.
Posted 5/12/2016 6:31 PM (GMT 0)
girlie's suggestion is better rifampin can hit you hard so starting biaxin first at half dose is a good idea.
Posted 5/12/2016 9:32 PM (GMT 0)
Think so? Think I should do Biaxin first without Rifampin? But isn't the point to hit the critters hard with both guns? LOL

Oh, and I'm not sure what the dose is yet. Biaxin is ready but the Rifampin won't come in until tomorrow afternoon, so I'm gonna pick them both up on my way home from work tomorrow. I'll know the dosing/schedule once I read the orders on the label. :)

Post Edited (notquitesoscared13) : 5/12/2016 3:38:17 PM (GMT-6)

Posted 5/12/2016 9:38 PM (GMT 0)
You don't want to hit them so hard that you suffer from an intolerable, debilitating herx.

Severe herxing is serious. It can put you in the hospital - I'm not trying to frighten you...but it's something to be aware of.

Part of the healing is to detox to eliminate the dead bacteria...and in doing so get a handle on inflammation.
Many of our symptoms are driven from the toxins.

So, make sure you have a good detox plan - as in multiple methods daily.

Yes, I would start biaxin first. Give it a week.
Posted 5/12/2016 9:40 PM (GMT 0)
That sounds like a plan. I can take Biaxin for a week and then add in the Rifampin. I guess I'll take the Plaquenil with the Biaxin? It didn't seem to affect me much when I took it for 3 weeks with the Doxy.
Posted 5/13/2016 12:37 AM (GMT 0)
notquitesoscared13 take it from me i've been treating bartonella for almost 4 months. when i first started the rifampin/cipro in 2 weeks it put me in the ER at the hospital thought i was having a massive heart attack. even now i get these mega-herxes that last for hours and make me literally cry. my LLMD says i should back off on the doxycycline from 100mg to 50mg to lessen the bug die off.

as girlie said you are killing bugs with the antibiotics and if you kill too many of them your system can overload and you get nasty repercussions.

what many of us say around here is take it 'low and slow'. this isn't a sprint its a marathon. keep us posted on your progress!
Posted 5/13/2016 4:18 AM (GMT 0)
darn these bugs...i did survive my first infusion of rocephin. ..i want them gone ...one practioner said if i was to eradicate all at once it would kill you...i got the rifampin stored up for after these rounds of iv...i am wondering shouldni treat all the bugs at once?...rikky i have been having chest pain for 9 months.freaky stuff..are you sure its bart? Not quite lettuce know how you fair
Posted 5/14/2016 11:08 PM (GMT 0)
Hi Rikky1, did you go back on the rifampin soon after your hospital incident, or did you take a break? Are you tolerating it better now, or did you maybe reduce your dose? I ask because I had a horrible reaction to rifabutin (similar to rifampin). My llmd doesn't want me ever to use it again.

Also, are you still on Cipro? Have you had any of the scary tendon issues that I've heard other people talk about?
Posted 5/14/2016 11:18 PM (GMT 0)
Eliz3333 - would you be open to sharing what your reaction was to the Rifabutin?
Posted 5/16/2016 12:05 AM (GMT 0)
I picked up the rx's a couple of days ago. The doc prescribed Biaxin 500 mg. twice daily, and Rifampin 300 mg. twice daily. I haven't started either yet, though. I've been doing a parasite cleanse--Humaworm--and I'm thinking I may finish it up (I've got about 1.5 weeks left), then start the Biaxin for a week, then start the Rifampin. Thoughts? Last night's back pain was scary, but it didn't come back today. Brain fog has been moderate today, along with just plain feeling tired.
Posted 5/16/2016 1:12 AM (GMT 0)
eliz3333 i took a break for about a week after the ER visit then started rifampin and a week later started biaxin. never went back on cipro. my problem with cipro was peripheral neuropathy particularly in my toes i couldn't feel them at times and it was different than the bart symptoms. i also started getting very tight/achy tendons. the toe numbness was enough but if it wasn't the tendon issues would've definitely made me stop.

i've been tolerating the rifampin quite well for almost 4 months now i take 2 300mg pills 1x a day when i wake up.

i was having minor chest pain since mid-nov but it exploded when i started treating bartonella with rifampin and cipro. i'm getting another igenex test for lyme and babesia and will know the results next time i see my LLMD a week from Friday. on one hand i do hope both come back negative on the other hand if something else is causing the chest issues besides bart I could probably treat it and it'll get better.

right now i dialed back the doxy 100mg 2x/day to 50mg 2x/day to see if the symptoms lessen.
✚ New Topic ✚ Reply