posted
My calves are aching, especially the back of my right leg (all symptoms are right sided), right under the "ball" of the calf. Not sure if this is achilles or not. It started off subtly and now is about a 4 or 5 on a scale of 1 to 10.
Not sure if I should stop taking it. I think I am still herxing. Crazy weekend, no time to rest, feeling super depressed and defeated since the first few days of cipro were hopeful.
If I can't take cipro or rifampin (had an allergic reaction on the first dose)....can I treat bart? I need something to cut through and give me my brain back......maybe I will get a job in fast food.
I have a doctorate and am still dealing with a brain that is pudding.
I am starting to think I will never get back to anywhere close to where I need to be, and don't have any idea how to handle this.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I'm not a doctor. Just a disclaimer.
Are you taking magnesium to helpw ith the tendors while on Cipro?
In my experience, not all tendon pain is due to Fluoroquinolones. I've had it hitting bart with plain herbs like HH-2 from Zhang. So, in my case, it can be a herx / flare rather than a side effect of the drug.
I believe many people stop quinolones too early beause they incorrectly believe they are having tendon issues.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Thank you. Yes I am taking magnesium. I guess the problem is I don't know how much to take and you can't take magnesium close to cipro. It has to be either 2 hours after a dose of cipro or 6 hours before a dose. So I take my am dose, then a few hours later I take magnesium.
I also take alka seltzer gold. I did get really muscle twitchy. I don't want to stop cipro, although I wish it had just helped without the herx.
I am hoping that I am herxing but I am feeling so foggy and discouraged today. For today I am wondering if I will ever ever get my brain back. And I so desperately need it because my career is going down the toilet with every day.
Thank you for your help
BTW...llmd said to give it a couple of days and keep her posted.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
I had a sudden onset of Achilles pain with Levaquin after being on it 32 days. I stopped it immediately. The pain did go up the calf.
The back of my ankle would feel like I had cut it shaving. It also sometimes felt like it was wet. It has taken two months for it to improve.
I did the vitamin C thing, lots of fish oil, and lots of magnesium. I was taking chelated magnesium 1,000 mg. a day.
My MD changed me to rifabutin which I tolerate well. He also added zithro since that hits bart as well.
Posts: 478 | From Third Coast | Registered: Feb 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
PME, I am hearing you about worrying about your brain. before I started abx, I was losing/mixing up words (I write for a living.)
the one that freaked me out so was I was trying to type "preaching to the choir" and for the life of me I could not figure out how to spell choir... I was so off, google couldn't even help me.
And when I would go to say to someone "let's talk about that tomorrow" "let's talk about that "yesterday" would come out of my mouth. I really thought I was losing it...thought the stress of the job was too much for me... thought I was getting alzhiemers... I was crying constantly.
how long have you been treating? for me, my brain was the first thing to come back (on zithro and doxy) but it was also the last symptom I had, before treating.
I had muscle pain after being on cipro after a week. It was in my shoulders and arms. along with fatigue and brain fog. I wrote my llmd and she thought it sounded like a herx. and it did go away. this is about the right timing for a herx right? But like bcb I am not a doctor.
when I did finally stop it after 12 weeks it was because every fiber in my body hurt and it didn't go away after my usual monthly flare up.
can you call your doctor? maybe you could take a two day break? does anyone pulse cipro?
Hang in there! it will get better.
are you on anything to help with the pain? are you sleeping?
around the time I got off cipro, I also started cymbalta it helped a lot, with brain fog too.
Posts: 1728 | From USA | Registered: May 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i cant help but say stop it and think it thru because if it is the tendon damage it can be permanent
i have talked to others very disabled by the drug
maybe some get over it but i know some who didnt and i would be caustious
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thank you all so much for the warnings and input.
My LLMD said if it waxes and wanes then I shouldn't worry about tendon issues, but if it continues to get worse then to give it two more days and stop.
It has gotten much better even though I have continued to take the cipro.
It is the first med that feels like it is doing something. I don't know quite how to describe it though, I feel clearer in my head and my headaches have been GONE for 2 weeks now. But I still feel pretty dense and like I am having trouble processing things.
So the fog has lifted somewhat and I don't feel like I am herxing right now. I am feeling a little more hopeful.
Thanks for all the warnings, I will take any pain very seriously.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you are not already doing so, have a calendar just for you and your lyme experiences. Write on there the date you started the cipro.
Write "good" each time you have a good day. Write "calf pain" and perhaps a number to indicate pain level each day you have that.
Write "headache gone" and abbreviate with "hg" every day that goes on, etc.
Write "depressed" or "hopeful" to be sure you are capturing mood symptoms. Also capture other mental symptoms like "bad fog" "little fog" etc.
As you look over your calendar, you will then be able to see if a pattern emerges. That is what you want to look for.
The calendar will tell you: 1. how long you herx, 2. what your herx symptoms are, 3. what symptoms have left (because, believe me, you will forget all about the ones that have left), 4. how often you flare or herx
The calendar enables you to summarize your experience on any drug. This is invaluable. It also helps to cut down on worrying once you see the pattern.
This is a biggie. Think about your state of mind when you wrote this post--what if I can't take cipro either, how will I get treated for bart, etc.
Anything that helps us with the anxiety induced by this disease is well worth the time. It helped me tremendously to see that every 28 days I got SICK. Then, when I saw it, I could anticipate it and not get upset by it. I would mark in advance "bad day" on my calendar. When it got bad around that day, I was cool. I knew it was just the time for a bad day. I didn't have to worry that I was backsliding, having a bad reaction to a med, etc. I already knew it was nothing wrong, just the expected flare.
That was so very neat. I could then begin planning my life a little. I never made appointments or commitments on days marked in advance to be "bad."
If the bad day didn't materialize, then I could celebrate. It was very, very nice to see my progress that way.
You really have to figure out a way to get a broad view of what is going on and then you won't be so upset by the daily ups and downs of these diseases.
Your doc is really giving you great advice, in my opinion. So glad to see how she operated in a circumstance like this.
I think congratulations are in order! You are seeing progress and you have evidence the meds are working. Congrats!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Mine was like the back of my ankles, it was both sides, and it got worse by the day. By day 9 I could barely walk. I didn't listen to everyone who told me to stop from the first day the pain started, and I stopped on day 9. The pain recurred for a couple years, and it still does sometimes. It did not clear up for months. It was very, very bad.
It was different from what you are describing though. But that doesn't mean you aren't getting "floxed."
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I do not have a journal of symptoms, I am finding it hard to organize to do something like that. I am still too scatter brained.
But it would certainly be worth a shot and I agree with you that the information would be invaluable. Previously I just thought that the informatioon would be depressing...not showing much improvement.
I do have notes from my monthly emails to my llmd so that helps a little. I can see I have made progress, especially recently.
But...I feel like the increased clarity has made me more aware of what my cognitive limitations are. This is a long road.
Tracy......What does floxed mean????????
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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quote:Originally posted by pme: My LLMD said if it waxes and wanes then I shouldn't worry about tendon issues, but if it continues to get worse then to give it two more days and stop.
In my case it waxed an waned at first but after 4 weeks, the damage was done!
"Floxed" means a very typical serious (often permanent) damage which can affekt almost any of your body system - be it neurological, digestive, the connective tissue, cartilage etc.
posted
My experiences: I took Cipro 5 years ago for a sinus infection and my achilles and patella tendons flared, swelled and almost ruptured. i stopped and it took 6 months to recover. HOWEVER, I got lymeBart a couple a years later, and after bad experiences with Rifampin, my doctor talked me into trying Cipro again.
I take 1200 mg of magnesium 2 times a day. I take cipro 7 days on 21 days off. pulsing it for me helps to keep bart away and keep my tendons pain free. I realize Bart is something that needs to be hit hard, but there aren't a lot of alternatives for me and I am 90-95% most days which allows me to handle an executive level job.
Posts: 32 | From Atlanta | Registered: Feb 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
pme - Here is what is working for me:
Buy a desk or pocket calendar and just write in your symptoms or other notes right in the calendar. Keep the calendar open somewhere where you'll see it every day (like near your meds) so you won't forget to use it. Use this calendar only for your Lyme symptoms.
Like TF said, it has helped me to see patterns which has reduced my stress a lot.
I too miss having a clear brain. It's good to know that cipro seems to be helping you, maybe I will ask about that one. Please keep us posted!
Posts: 1737 | From Virginia | Registered: Aug 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I do this too. At the by front of most date books there are 12 (sometimes 24) months of little calendars all on one page. On this page i mark a bad day by blacking out the day. So-so days are circled and good days are left alone. You can look really quickly and see patterns. And you can see mor and more good days.
Posts: 1728 | From USA | Registered: May 2011
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posted
OK....that makes sense Thank you for the explanation of "floxed", that link is super scary
I like the idea of pulsing the Cipro...maybe I will speak to my dr. about that.
Slipper...I believe you said your whole body started hurting. I experienced this for about 36 hours on Sun/Monday along with some major depression. It is better today except my breasts are extremely painful (sorry if TMI) I have had this before but not in the same way. I seem to be herxing every 3 days for about 2 to 3 days. I need to make sure this extends out a little bit.
The scary part is that it sems to be working so this is not an easy decision. I am getting sporadic calf pain so I am definitely keeping an eye on it.
Lots of detox helps and I brought my son in for PT yesterday and they had an opening so I went too for some cranial sacral work. I really neede it yesterday.
sscott....I appreciate your reply. I own a business , do research and work clinically. I am feeling like some days I can do some of it but when I am herxing its a no go. I am feeling like a big loser so I am so happy to hear that you feel up to 95% and feel capable of holding down a job. I wonder if I will ever feel confident again.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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I hope you find another option that works for you.
Have you tried anything else? I tried rifampin but had an allergic reaction. I feel so on guard on the cipro.
I know I need this though...and it has been effective. Almost 3 weeks in and not one pounding headache after 20 years of daily headaches. Ugh. I don't want to create other issues but it is nice to wake up headache free.
So much bad news about cipro though.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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