Antibiotic side effects

Posted by diane36 @diane36, Mar 12, 2018

Diagnosed nine months ago with MAC and bronchiectasis. Taking azithromycin, ethambutol and rifampin. In the last two months have developed severe itching of arms and legs, which pulmonologist does not attribute to meds. Neither dermatologist- prescribed creams or change of bath soap, lotions and laundry detergent have helped. I am wondering if similarly diagnosed patients taking the meds I am taking have experienced this unpleasant, ugly itching.

@donnamarie

Have been on/off antibiotics since 2006 in large doses. When I moved to central NJ displayed every single symptom of Lyme in 1992 & again in 1994. MD said labs were negative. 2005 woke up, couldn't move, trouble swallowing. Lived near Manhattan so I went there to try to find out why all these bizarre things were happening to me: 4cm parathyroid adenoma removal, rectal blood hemmorage, requiring transfusion, bleeding very heavy during my period until I began bleeding heavily every day , finally hysterectomy, sick all the time. 2006 diagnosed Lyme + co-infections. Lyme MD went back over all my med records & found that Lyme lab was positive. Put on azthromycine/doxycycline/bactrim/ & more for 3 years straight. Immune system shut down due to malnutrition & gastroparesis; kept getting pneumomia/bronchitis;put on more antibiotics. I can no longer take any other antibiotics other than Clindomycin & Levaquin. I too have permanent loss of hearing right side, my hands don't work & weakness in arms & legs. If I take Rocephin, I break out in an unbearable pink itchy rash that keeps spreading; takes weeks to go away; doxy makes me so sick; augmentin I just vomit; can't tolerate penicillin. Please excuse my spelling as my brain isn't working right.

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You have been through hell. I hope that the people in this group can offer you support and practical ideas to help make your life easier.
Have you tried acupuncture to alleviate the side effects of antibiotics and Lyme?

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@donnamarie

Have been on/off antibiotics since 2006 in large doses. When I moved to central NJ displayed every single symptom of Lyme in 1992 & again in 1994. MD said labs were negative. 2005 woke up, couldn't move, trouble swallowing. Lived near Manhattan so I went there to try to find out why all these bizarre things were happening to me: 4cm parathyroid adenoma removal, rectal blood hemmorage, requiring transfusion, bleeding very heavy during my period until I began bleeding heavily every day , finally hysterectomy, sick all the time. 2006 diagnosed Lyme + co-infections. Lyme MD went back over all my med records & found that Lyme lab was positive. Put on azthromycine/doxycycline/bactrim/ & more for 3 years straight. Immune system shut down due to malnutrition & gastroparesis; kept getting pneumomia/bronchitis;put on more antibiotics. I can no longer take any other antibiotics other than Clindomycin & Levaquin. I too have permanent loss of hearing right side, my hands don't work & weakness in arms & legs. If I take Rocephin, I break out in an unbearable pink itchy rash that keeps spreading; takes weeks to go away; doxy makes me so sick; augmentin I just vomit; can't tolerate penicillin. Please excuse my spelling as my brain isn't working right.

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That’s a really good suggestion. I was hopeful for that myself, but Medicare wouldn’t cover it.

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Check with Medicare again. Ours covers 50% of 10 visits. A recent development.

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@egayle187

Check with Medicare again. Ours covers 50% of 10 visits. A recent development.

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Ok. Thank you so much. I will.

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I had Lyme Disease. I caught it in Westchester/CT area but it was diagnosed within three days of what might have been bite. People in this area were getting it but misdiagnosed. I had the bullseye on my neck and saw a doctor while on a trip to parents. Put on three massive doses of antibiotics but since that time, I have picked up unusual diseases. There was a vaccine developed but never used as it would not be profitable to company. Since I had Lyme, all kinds of things developed or came to light like sarcoid, MAC, Achalasia. I wonder why I got the bite when others in same large group got nothing. In my immediate family, no one has developed unusual diseases. I never experienced what you went through but I think we are all different and people in area where I was bit have had terrible side effects from bite. Many of them were in my parent's age group although younger kids had problems. I had no idea why I learned that this vaccine was not more broadly broadcast.

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@jkiemen

I think half the battle is keeping from driving myself nuts with all the thoughts and what if's.

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I think I already have made myself crazy. My pulmonologist told me to stop all the reading and research and let him take care of it. He pretty much told me I am making myself worse by doing so. I need a Calgon take me away day.

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@jkiemen

I think half the battle is keeping from driving myself nuts with all the thoughts and what if's.

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With no disrespect to your pulmonologist- I am sure he wants to keep you calm because being anxious about it all robs you of life’s joys. However, reading is a great learning/teaching tool. Just try to keep it all in perspective if you can do that.

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@jkiemen

I think half the battle is keeping from driving myself nuts with all the thoughts and what if's.

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I agree with @irene5. The reason so many of us were misdiagnosed is that there was no information available until recently. Read and learn from others, but don't fret about what might happen in the future. A Calgon bath sounds good for reducing stress and anxiety. There are many evidence-based techniques for calming anxiety on line. Check a reputable site like WebMD.

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Thanks. I want to stay up to date to advocate for myself. Yes, I don't want to be miserable etc. He did tell me that he realizes that every time I came and after every scan that got just a little worse but not enough to treat, was like taking away something from me each time I went. Then finally, when it was decided it was time to treat, it was like taking a bigger chunk away. He said he is hoping that the next scan will at least be stable or a little better and that may be a positive that will help. So lets pray for a stability or improvement.

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@donnamarie

Have been on/off antibiotics since 2006 in large doses. When I moved to central NJ displayed every single symptom of Lyme in 1992 & again in 1994. MD said labs were negative. 2005 woke up, couldn't move, trouble swallowing. Lived near Manhattan so I went there to try to find out why all these bizarre things were happening to me: 4cm parathyroid adenoma removal, rectal blood hemmorage, requiring transfusion, bleeding very heavy during my period until I began bleeding heavily every day , finally hysterectomy, sick all the time. 2006 diagnosed Lyme + co-infections. Lyme MD went back over all my med records & found that Lyme lab was positive. Put on azthromycine/doxycycline/bactrim/ & more for 3 years straight. Immune system shut down due to malnutrition & gastroparesis; kept getting pneumomia/bronchitis;put on more antibiotics. I can no longer take any other antibiotics other than Clindomycin & Levaquin. I too have permanent loss of hearing right side, my hands don't work & weakness in arms & legs. If I take Rocephin, I break out in an unbearable pink itchy rash that keeps spreading; takes weeks to go away; doxy makes me so sick; augmentin I just vomit; can't tolerate penicillin. Please excuse my spelling as my brain isn't working right.

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Does anyone use essential oils?

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@jkiemen

Thanks. I want to stay up to date to advocate for myself. Yes, I don't want to be miserable etc. He did tell me that he realizes that every time I came and after every scan that got just a little worse but not enough to treat, was like taking away something from me each time I went. Then finally, when it was decided it was time to treat, it was like taking a bigger chunk away. He said he is hoping that the next scan will at least be stable or a little better and that may be a positive that will help. So lets pray for a stability or improvement.

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Yes. Praying for that for you – and all of us.

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@donnamarie

Have been on/off antibiotics since 2006 in large doses. When I moved to central NJ displayed every single symptom of Lyme in 1992 & again in 1994. MD said labs were negative. 2005 woke up, couldn't move, trouble swallowing. Lived near Manhattan so I went there to try to find out why all these bizarre things were happening to me: 4cm parathyroid adenoma removal, rectal blood hemmorage, requiring transfusion, bleeding very heavy during my period until I began bleeding heavily every day , finally hysterectomy, sick all the time. 2006 diagnosed Lyme + co-infections. Lyme MD went back over all my med records & found that Lyme lab was positive. Put on azthromycine/doxycycline/bactrim/ & more for 3 years straight. Immune system shut down due to malnutrition & gastroparesis; kept getting pneumomia/bronchitis;put on more antibiotics. I can no longer take any other antibiotics other than Clindomycin & Levaquin. I too have permanent loss of hearing right side, my hands don't work & weakness in arms & legs. If I take Rocephin, I break out in an unbearable pink itchy rash that keeps spreading; takes weeks to go away; doxy makes me so sick; augmentin I just vomit; can't tolerate penicillin. Please excuse my spelling as my brain isn't working right.

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Do these have any scent? I cannot wear perfume anymore and told not to have candles or scents in the house.

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Hello everyone I have a couple of questions I hope someone maybe able to help point me in the right direction. I have been on the “Big 3” antibiotics finishing up month 10. I had to go off the ethembul at the end of month 7 due to serious breathing issues. My question is this. I am still on Clarithromycin 500mg 2 times a day meaning 1 tablet in AM and another in PM. I also take Rifampin 300mg 2 times a day. One tab in the morning and the other in the PM. As prescribed by my ID Dr. I am now having extreme pain in my shoulder and my next to the point of not being able to lift my arm up high enough to do simple things like putting my hair in a pony tail or even shaving that armpit.
When I mentioned this pain to my ID Dr. He gasped and said I have had to take you off one medication so far and now….. you are asking me to take you off the other two?
I did not ask to be removed off the meds. I just told him my serious pain I was suffering from.
Has anyone else suffered this kind of pain due to the medications? Any and all information is so appreciated.
Hugs to you all.

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Carla, I'm sorry that I can't address your specific issue, but then I received little response re. my concern with the "Big 3," which I've been taking M, W and F for nine months. My issue is a lumpy rash on lower legs and arms with extreme itching. Pulmonologist was reluctant to relate my problem with the meds, so I do share something with you re. medical response to our separate dilemmas. I hope you will receive more meaningful exchange of info than I can offer. In the meantime, I, too, am seeking a solution to a chronic and irritating condition that dermatologist believes to be connected with at least one of the three meds I'm taking. I certainly hope that you will find a viable resolution to the pain that you're experiencing.

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@carla1196

Hello everyone I have a couple of questions I hope someone maybe able to help point me in the right direction. I have been on the “Big 3” antibiotics finishing up month 10. I had to go off the ethembul at the end of month 7 due to serious breathing issues. My question is this. I am still on Clarithromycin 500mg 2 times a day meaning 1 tablet in AM and another in PM. I also take Rifampin 300mg 2 times a day. One tab in the morning and the other in the PM. As prescribed by my ID Dr. I am now having extreme pain in my shoulder and my next to the point of not being able to lift my arm up high enough to do simple things like putting my hair in a pony tail or even shaving that armpit.
When I mentioned this pain to my ID Dr. He gasped and said I have had to take you off one medication so far and now….. you are asking me to take you off the other two?
I did not ask to be removed off the meds. I just told him my serious pain I was suffering from.
Has anyone else suffered this kind of pain due to the medications? Any and all information is so appreciated.
Hugs to you all.

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I would check to make sure the pain is not due to something else like rotator cuff etc. I have felt some weakness in my arms and legs. I have pain in my right shoulder but I also had it on and off before I started the meds. ( it think due to lifting grandchildren). I know I had to be taken off Rifabutin due to muscle and joint pain early on and was switched to rifampin. I am only finishing up Month 4. I did notice the first few months of treatment wasn't too bad but this last month was not as good due to various problems.

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