Feeling so defeated that I feel like giving up. Need encouragement. (Cipro woes)

Dear HealingWell,

I originally posted a thread about cipro and my development of tendon pain in the months following here:

www.healingwell.com/community/default.aspx?f=38&m=2721533

I discussed the issues with my GI today and because of the location of the tendon pain (achilles tendon on both feet), it is in fact from the cipro (took it from 2/26-2/28). The reaction is delayed (started 4/28) because I was on corticosteroids recently, so it weakened the integrity of my tendons. I basically went from being able to cycle, walk and do yoga to having tons of pain in both tendons. I am also getting pains in the tendons of my left arm and elbow. I have to limit my mobility so that there's a chance to heal and not rupture, as much as I want to exercise.

It turns out that Cipro does the following things according to Doctor Todd R. Plumb, M.D (another levaquin victim).
1)Inhibition or disruption of the central nervous system GABA receptors
2)Depletion of magnesium and disruption of cellular enzyme function
3)Disruption of mitochondrial function and energy production
4) Oxidative injury and cellular death

IBD patients are at a great risk of tendon issues due to previously existing magnesium deficiencies. Because I was put on Cipro for strep throat which lasted one month or so, my body was already weak and depleted of nutrients; it ended up weakening my system even further, and to the point where I couldn't sleep for more than 1-2 hours (disruption of GABA receptors).

The literature says that it can take weeks to months to recover, with some people never recovering. It has been two weeks for me but I see little sign of progress. I didn't want to believe that I'd be part of the countless horror stories that are on the web - I'm really hoping and even praying (agnostic) that it will go away with time. I'm supplementing with epsom salt baths, chelated magnesium, extra vitamin D, fish oil, multivitamins and such. I'll start LDN over again to see if it helps.

Because I'm flaring (4-5 bowel movements a day with cramping, blood and urgency), it is already difficult for my body to get proper nutrition - I may have to go the intravenous route.

I'm a little shocked about this and I need words of encouragement, if any. I've fought UC and never for once wanted to give up, but this extra burden of not being able to walk properly is just way too much for me.

Thank you guys.

Post Edited (StealthGuardian) : 5/19/2013 9:00:10 AM (GMT-6)

Good luck to you... sounds like you could use some close family support as well.. maybe talking to some close friends might help too?

-Victor

Did you get an Achilles tendon strap? it may help support the healing tendon.

I can't say that I have ever been through what you are going through but having had fibromyalgia for several years I know what it is like to be in pain and to be limited in activities of daily life. And I know how awful it is that so many of our UC meds cause additional serious problems. It is hard fo our friends and family to actualy "get" what we are going through. I know things wil get better for you with time and eventually you will have more good days than bad. I am believing that for mysef too. You always have people here who are concerned about you and what you go through because we DO get it. Praying for your recovery hang in there there is light at the end of the tunnel. I have caught glimpes of it myself :)

Bess, did you know fibro has been linked to both Lyme disease and Chlamydia Pneumonia?

Take the herbal cryptolepsis instead of cipro. It is natures fluoroquinoline. It does not cause tendon damage and is friggin awesomesauce. Knocks out malaria faster then any drug we have. Is anticancer... they have found no known side effects to it.

FeelBetter? said...
Wow great posts! I too am having Cipro woes. Hang in there!

My friend just called her Dr yesterday because she was taking Cirpro and all of her tendons started hurting badly. She does not have UC or anything else she just had a bad UTI. it is in the side effects that it can cause Tendon damage.

I have Fibro too so that is interesting, maybe that is why I am so awfully ill, tired and dizzy today.

Hang in there don't let the boogers win!. We can hang in there together. I will be thinking of you from my bland diet and bed today. :>

Thank you, that really helps.

Scum1 -

He said to wait and see if it goes away in the following weeks or months.

Due to the location of where the pain is, the achilles tendons of both feet, he determined it was the cipro since there was a black box warning about it. He said it happened mainly in men in their 70s.

They aren't blown but I've had trouble walking. Now the pain is in my arms, as I have trouble lifting things - all of this seems to be indicative of the peripheral neuropathy warnings that the drug label warned about. I know I had all the following symptoms after taking it: terrible insomnia, tingling sensations, nightmares, suicidal thoughts, severe anxiety, depression - all of which are signs of magnesium deficiency, which cipro takes away.

Could it be due to the prednisone? I'm hoping for that possibility. I recently weaned off so I'll wait and see what happens in a few weeks and whether these pains go away over time.

no advice, just hope things get better soon -

hurtbyuc said...
Good luck to you... sounds like you could use some close family support as well.. maybe talking to some close friends might help too?

-Victor

My family, unfortunately, believed all the issues to be psychosomatic. I mean how could cipro possibly do such harm right?

Only when the GI confirmed it did they start believing me. They aren't concerned and seem to think it will go away with time. I've never had an ounce of emotional support from them in fighting this disease - they always believed it was stress induced or in my head in the beginning.

I understand what you are going through scum1. The only ones that don't are those who haven't been burdened with a chronic illness - not their fault, just incapable of understanding. My family fits that mold perfectly.

bananagirl said...
aww stealth. i hate that you are dealing with this. i remember 2 years ago i was admitted to the hospital for a UC flare and put on IV cipro and flagyl immediately. i didn't have an infection but at the time (it was my first UC flare) i didn't know what standard protocol or treatments they did. they also gave me IV prednisone. since then, i've had neuropathy in my feet that is constant. it's never gone away and i assumed it would once i was able to walk again (couldn't walk on my own for a few months due to water retention/pain so i used a walker). i ended up seeing that neuropathy can be a side effect of antibiotics. i'm just mad that there was really no reason they should've given them to me. my WBC was high but knowing what i know about UC, most people have a high WBC during a flare. just makes me upset.

Thank you for responding bananagirl. Two years ago, you were 21. Cipro is restricted for people under 18 due to developing bones and collagen. The body doesn't stop developing until 25ish. I'm sorry about the neuropathy and I can kind of relate given the pains that I'm going through at the moment.

You had no control over what medications they gave you at the hospital. I took cipro because I trusted my doctor too much - at least I had some semblance of control over it. Unfortunately, many victims ended up trusting their doctors this way.

Don't get lost in the sad stories. Equip yourself with information and a plan.

Epsom foot soaks are great because you can use hot water and get circulation down to your Achilles at the same time. Just try one full detox bath a week in warm Epsom soak.

Your greying hair at 26 and as a result f this toxicity jumped out at me as a sign of MTHFR mutation. Read pages 27-28 of this link
www.joomag.com/magazine/fibromyalgia-chronic-pain-lifejun-2012/0648498001339623432