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lmh7
@lmh7

Posts: 11
Joined: Apr 20, 2017

Symptoms of tingly arms, hands, feet and calves

Posted by @lmh7, Sun, Jun 10 11:36am

I'm wondering if anyone has experienced these symptoms caused by either MAC or the Big 3 antibiotics; tingling achy arms, hands, feet and calves with feet being slightly swollen and painful when first standing. My doctor discontinued the 3 antibiotics one month ago after being on them for 14 months, as I was experiencing flu-like nausea, chills and sweating, which started shortly before discontinuing the antibiotics. Now after a month I'm still having all of these symptoms. Are there any perscriptions for nausea that have worked for any of you? It's hard to be at work while feeling so crummy. I'm almost more worried about the tingly sensation going on now. Thank you for your help!

REPLY

Reglan is good for nausea. You would need a prescription. I have had tingling extremities both on and off the meds. So sorry you are dealing with this and working as well.

@lmh7…I have tingling in all extremities, too, both on and off the antibiotics. I have found that acupuncture helps me keep this to a minimum as well as reducing the swelling in my feet. My nerves seem extra sensitive and kept me coughing constantly for 5 years. Acupuncture has calmed them down.
have you had a gastroenterologist consult? Hernias and acid reflux made my lungs susceptible to MAC and constant infections.

@lmh7 Hi there. I am sorry to hear that you are feeling so bad from your meds. The issues you are having in tolerating the 'Big 3' is not unusual. Many members in our group are experiencing similar problems. Many quit the treatment. Those drugs used to treat MAC are very strong and have a certain level of toxicity. Ask to try something different. You can ask about inhaled antibiotics like cipro, tobramycin, and others. Did you ever get an appointment and get seen at the Mayo?

@lmh7 I had the symptoms with Rifabutin and changed to Rifampin. I did good during the first 3 months but have more stomach aching and full feeling now with some weight loss and of course I can fall asleep really fast at night. I am on my 7th month and hoping to make it as long as I can. Some days are OK and others are not OK. I has labs and liver tests were OK except the GGT which most MD's don't order was a little elevated. They want me to continue and recheck in 3 months. Hopefully I can keep up the dosing. Has anyone had any changes in liver function labs while on the meds?

@jkiemen

@lmh7 I had the symptoms with Rifabutin and changed to Rifampin. I did good during the first 3 months but have more stomach aching and full feeling now with some weight loss and of course I can fall asleep really fast at night. I am on my 7th month and hoping to make it as long as I can. Some days are OK and others are not OK. I has labs and liver tests were OK except the GGT which most MD's don't order was a little elevated. They want me to continue and recheck in 3 months. Hopefully I can keep up the dosing. Has anyone had any changes in liver function labs while on the meds?

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What does GGT stand for???

@jkiemen

@lmh7 I had the symptoms with Rifabutin and changed to Rifampin. I did good during the first 3 months but have more stomach aching and full feeling now with some weight loss and of course I can fall asleep really fast at night. I am on my 7th month and hoping to make it as long as I can. Some days are OK and others are not OK. I has labs and liver tests were OK except the GGT which most MD's don't order was a little elevated. They want me to continue and recheck in 3 months. Hopefully I can keep up the dosing. Has anyone had any changes in liver function labs while on the meds?

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@megan123 It is the name of a Lab test

@jkiemen

@lmh7 I had the symptoms with Rifabutin and changed to Rifampin. I did good during the first 3 months but have more stomach aching and full feeling now with some weight loss and of course I can fall asleep really fast at night. I am on my 7th month and hoping to make it as long as I can. Some days are OK and others are not OK. I has labs and liver tests were OK except the GGT which most MD's don't order was a little elevated. They want me to continue and recheck in 3 months. Hopefully I can keep up the dosing. Has anyone had any changes in liver function labs while on the meds?

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@megan123 GGT is a lab test for liver enzymes. It tests for how well the liver processes medications. These enzymes can also indicate issues with the kidneys, and gall bladder.

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

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@lmh7, Hi. Do you have a first name I can call you, or would you rather stay with lmh7? Your news is very disheartening, and I am sure you must be pretty upset by it. I am sorry that this has happened to you. The only advise I can offer right now is to do nebulized saline treatments twice a day if you aren't already doing that. Have you read in the 'Discussion' list 'How To Avoid Reinfection'? Some theories about why we get re-infected is because we are doing the same things that got us there in the first place (supposedly). A good example of that would be getting into hot tubs, potting plants with potting soil, swimming at indoor pools, showering………what are your thoughts?

@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

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@lmh7 I also wanted to add that it does sometimes happen that people get re-infected while on their 'Big 3' because at some point in the treatment process; the bacterium became resistant to the antibiotic. Every one of us should have a hard copy of our lab results from sputem or bronchoscopy or biopsy from our lungs. Along with the results we need the SUSEPTIBILITY TEST that was done with it. Have this in it's own file folder. As the years roll by, you will see why this is important.

@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

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Hello @windwalker: So far I have not been doing any nebulized saline treatments so will ask my doctor about that. After first being diagnosed in March 2017, I asked my Mayo doctor about how to avoid reinfection. He said "Just avoid indoor hottubs and don't worry about it as there is no way to avoid it". When I became sick with MAC symptoms again after a year while still on the 3 antibiotics, I learned by way of scouring the web that there are many ways to avoid the bacteria. I am very discouraged that he didn't tell me the facts so I could have helped myself. I am now doing everything recommended to avoid it. Also, I am wondering what a suseptibility test is that you mentioned? Is it possibly a list of drugs that will work with the strain I am infected with? I am now waiting for the bronchoscopy results to come back so maybe it will come along with it?

@kmh7 I think the Doctor has to order culture and sensitivity testing. The cultures take a long time to come back. Weeks. Ask where they are sending it. I think they tell me the best place is National Jewish for sensitivity testing. I am sure there are other places also. He should tell you which bacteria type you have.

@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

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@lmh7, I feel certain that a suseptibility test was automatically done with your lab test, especially if it were done at the Mayo. You can call and request a hard cipy of your lab tests from the sputem test along with the suseptibility test. That is a test to see which antibiotics will and will not work to treat it. Each and every one of us should have these hard copies in our possession; in our own file.

@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

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@windwalker, @jkiemen, Yes they are doing a suseptibility test and I am waiting for it to come back. I am actually just as concerned now with the neuropathy that I am having in my feet and hands. I assume it was caused by the ethambutol. I quit taking it 2 months ago and the neuropathy seems to be getting worse. Has anyone had this happen? If so, has anyone had it go away in time?

@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

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@lmh7 Per your statement that the dr never told you how to avoid re-infection…..as great as I think my dr is, he never mentioned those things either. He was solely concentrating on how to treat it. Being the researcher at heart that I am; I had looked up all that I could find to learn about my disease, and so that is how I learned what to do. Then joining this support group here also contributed to learning more. Moral of the story is: We must be our own best advicates!

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