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Posts (8)

Dec 22, 2019 · MAC Reboot - After 3 Years Post Meds in MAC & Bronchiectasis

Hi Mim,
I was diagnosed with MAC and bronchiectasis 15 years ago. I was on the "Big 3" for 18 months at that time. About 10 years ago I had a positive sputum culture, again, for MAC. Because I was pretty much symptom free with O.K. pulmonary function tests and CT scans, the physicians at Mayo Clinic decided not to treat. Fast forward to today…I am now having some symptoms (weight loss, increase respiratory illnesses, chest tightness). The MAC is still there (along with a few other lovely bugs!) so we have decided to treat it again. Back on the "Big 3" starting next week. Although it isn't pleasant, I've gotten through it before, so I'll do it again! Good luck to you.
Cindy

Dec 8, 2019 · Tingling and numbness in arms and legs related to MAC? in MAC & Bronchiectasis

Hi Kathy,
I had/have similar symptoms. I was diagnosed with MAC 15 years ago, was on the "Big 3" for 18 months, and have done well since then until last November when the MAC returned. At the same time I found that out, I became ill with a viral/flu-like illness. Shortly thereafter, I started with tingling and weakness in my lower legs, feet, arms,and hands. Like your sister, I had many tests done to determine what was causing it. In the end, it was decided that I had a post viral neuropathy caused by the flu-like illness. The doctor that treats my MAC does not feel that it is/was related to the MAC. My symptoms are better, but have not resolved. We are going to start treating the MAC in a couple of weeks. It will be interesting to see if the neuropathy symptoms go away – I'm not convinced that the two are not related.

Oct 25, 2019 · Aching legs from Small Fiber Neuropathy in Neuropathy

Hi Lori Renee. I found it interesting that you wake up with a sunburn feeling in your lower legs every morning. I am awaken early every morning with burning in my hands (sometimes feet). It is usually quite intense and I am unable to go back to sleep. It eventually passes but I sure don’t like it! Seems like a “release” of some kind but no one has been able to explain it to me yet. What do you attribute yours to? Cindy

Oct 24, 2019 · Post viral neuropathy in Neuropathy

Hi Lisa, The specialists that I saw felt that I had an immune response to a viral illness. The antibodies that I created mistakingly attacked my nerves creating the neuropathy symptoms. So, it is different than postherpetic neuralgia. I have only come across a few others who have had this particular type of neuropathy. Apparently it is on the “spectrum” of Guillain Barre.

Oct 21, 2019 · Post viral neuropathy in Neuropathy

Jager, I was prescribed the Cipro because of a bacterial infection that was only sensitive to flouroquinolones. The symptoms had already started after a previous viral infection. I haven’t ruled out that Cipro may have aggravated the situation…..my main focus now is not what caused it, but learning how to manage the symptoms; and praying that they improve. I am curious to know what has helped others. Thanks for your response.

Oct 20, 2019 · Post viral neuropathy in Neuropathy

Thank you for your response. It is encouraging to know that you feel your symptoms are improving. I know it is possible for peripheral nerves to heal overtime – hopefully that's us!

Oct 20, 2019 · Post viral neuropathy in Neuropathy

I actually did take Cipro for about a week for a bacterial lung infection that I had at the same time. The parathesias were already present, but the Cipro seemed to make it worse. The specialists that I saw thought there might be a connection but seemed to feel that virus was the main cause of the neuropathy.

Oct 20, 2019 · Post viral neuropathy in Neuropathy

I am curious to know other’s stories of post viral neuropathy. I acquired a peripheral neuropathy out of the blue after a viral illness; and, have been dealing with it for almost a year. My symptoms include tingling, burning, and weakness in arms,hands, feet, and lower legs along with muscle twitching. I am trying to limit prescription medications and rely more on supplements, exercise, etc. Looking for some positive feedback on this crazy ailment!