Legs hurt so bad: How long does it take to get control of MAC?

I am a Therapeutic Massage Therapist and teacher and NO MASSAGE with DVT. Colleen is so correct. Contact your doctor immediately if this is suspected. In addition- A late discovery to the medical world (abt. 1994) is a genetic mutation called
Factor V Leiden (the V stands for "5"). Factor V tells your blood to STOP clotting. Those with the Factor V Leiden mutation may continue to clot and form DVT. Factor V Leiden is passed down from parents and can contribute to blood clots. It is found in Caucasians of Northern European descent. There are two forms: heterozygous, 50% of the factor V in your blood is mutated and there is homozygous, 100% of factor V is mutated. Factor V Leiden can be detected with a simple blood test. Here is a link to complete information - https://en.wikipedia.org/wiki/Factor_V_Leiden

I have recently been prescribed Azithromyicin to be added back in to the Big 3. Originally I was taking Ethamathrol, Anikacin, Rifibutin and then Azithromyicin and Clofaximine were added. My liver enzymes rapidly elevated so I was taken off of everything. After a short time Ethamathrol and Clofaximine were started and last week Azithromyicin at half dosage (250 mg.) was added. Since adding the Azithromyicin my lab results look good; however I have woken up with a headache every day and it lasts all day long. I have tried taking the "Z" med at night and then mid day, with no difference in the headache. Any suggestions? Also how does one explain this diagnosis to one's friends? I look the same to them but can't do the things I used to do. This is a weird time in my life!!!

I start by assuring them that the infections being treated are deep in my lungs and totally not contagious to others - in fact, you are more apt to catch some bug from them than they from you. Then I will explain that my lungs are permanently damaged - for causes unknown they don't move air and mucus properly, meaning I may be short of breath and/or fatigued, may get infections that need treatment for a very long time, and that while the infection can be cured or managed, the underlying damage stays with me.

After 4+ years, I always explain that, like diabetes or arthritis, bronchiectasis is just something I live with. That there are "treatments" I do daily to stay healthy (nebbing & airway clearance.) Things I no longer do (hot tubs or indoor water aerobics.) Good days and bad days... As I get older, I find more and more people understand. Sometimes it is a relief to them to be able to also admit to no longer having the energy for some activities, or needing a day off or a nap. Or that they have a persistent but invisible health issue to live with.

Now that there are many people reporting long Covid, an easy way to explain is that like many with long Covid, you look normal, but have "hidden issues." Then, depending on how much detail you want to share, you can explain about the side effects of the meds, or the toll the meds + infection take on your body.

As for the Azithromycin headache, I always took mine at bedtime & after several weeks they began to subside. I found that staying super-hydrated helped. Also, eating something and taking one Tylenol with it helped.

Sue

Thank you so much for your reply, Sue. I liked the way you warned others that you are not contagious to them. That allows other people to relax while in my presence. I also liked the comparation to diabetes or arthritis, good days and bad days and long term treatment causing fatigue and weariness. Living with a persistent but invisible health issue is an excellent way to describe this condition.

I will continue with the Azithromycin at night as it has only been five days and, as you indicated, perhaps after a while the head ache will subside. I can no longer take Tylenol because apparently, in me, even that med causes havoc with my liver.
I have much to learn. Being able to ask questions of someone who has had experience with these issues is a huge help. Thank you. Nancy

Oh, Nancy - It is miserable to have a headache on top of the misery of MAC & the medications! I'd like to offer some tools you can try.
I just thought of 2 things that relieved my daughter's medication-induced headaches when she was a teen. If you have someone with good strong hands, have them position them over the areas of the most intense pain and apply pressure - as much as you can bear - for 30 seconds to a minute. Release and repeat. I don't know why it works, but the pediatrician showed us and it helped her. The other help was either warm wet compresses (my Dad's remedy) or gel ice packs, applied to both the back of neck & top of head. This worked for me when even Tylenol didn't.

Finally, something that works for me when my chronic pain kicks in. When you anticipate pain (like the headache), your body is on "high alert" and everything tenses up - even if you are not aware of it. Try these: https://www.oxfordhealth.nhs.uk/wp-content/uploads/2014/08/OP-153.15-Neck-exercises.pdf
Caution - don't use your hand to pull on your neck, keep shoulders relaxed. Or consult a physical therapist for a session or two, where they can teach you a series of gentle exercises and stretches to counteract the reduced activity that comes with feeling ill, and to promote good blood flow.
I'd like to hear from you in a few days about whether you have found some relief.
Sue

Hi, I’m Gloria, I’ve had MAC, Bronchiectasis, and Tracheobronchomalacia (collapsed airways) sense 2013. I now have leg pain. My pain was so bad I could barely get in and out of the car. Could not lift them. Mine was caused from taking an antibiotic Levafloxcin now my feet hurt and I have neuropathy from the medication. It’s a side effect. I was very sick and nothing was working. It worked very well but left me damaged side effects. My Pulmonologist referred me to Pulmonary Rehabilitation that has helped me tremendously. You may ask your doctor to sign you up. My pain has gotten a lot better. You do physical exercise and learn how to breath with a Pep and cough up mucus. Try and get that up as often as you can. The three meds I know are awful. Make sure you get your hearing, eyes, checked every four months. That is very important. It will get better in time and you learn how to handle it. I will keep you in my prayers. Gloria