MAC AND VALLEY FEVER

Posted by scratssun @scratssun, Jan 18 9:51pm

I was diagnosed with MAC (bacterial infection) & Valley Fever (fungal infection) in June 2023. I agreed to take Fluconazole to attempt to cure the Valley Fever but was beyond scared to begin the 3 med treatment at the same time for MAC. However in December 2023 my infectious disease doctor said I needed to being the MAC meds Azythromycine 500mg, Rifampin 600mg & Ethambutol 1200 mg three times each week. He indicated I would not like the results as the disease progressed if I did not begin MAC treatment. Having read about side effects, with tears in my eyes and very scared, I began taking the meds December 5 along with the Fluconazole. I spent a lot of time worrying and am happy to say I have had no side effects! The sporadic cough I had is gone, my energy is high (I swim, walk, play pickleball, and bike. ) My weight is stable at 100 lbs. I read the MAC updates daily and am very appreciate of all those who contribute and are helping me stay calm.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

cwal | @cwal | Jan 19 6:57am

Hope you continue to do well! Never heard of Valley Fever. Did it clear?

Rick | @rstel7272 | Jan 19 9:30am

I too,tolerate the big 3 very well. There are a lot of horror stories on these blogs. I sometimes find it hard to believe someone would take a bloggers advise over their Doctor. Finding the right Doctor is the challenge. I value the shared experiences on these blogs but cringe when someone says not to something a Dr has ordered. This occurs more on another blog than this one.

scratssun | @scratssun | Jan 20 12:44pm

In reply to @cwal "Hope you continue to do well! Never heard of Valley Fever. Did it clear?" + (show)

Thank you. Valley Fever is a fungal infection in the lungs commly found in people living in AZ, CA, NV,NM, TX etc. The fungi lives in the soil of dry area. We have hiked extensively and been off roaders for several years which may have been the cause of this problem. Although I have now been on the Fluconazole for 8 months, VF still is present. This is a concern as I've added the big 3 for MAC. Thankful that I have a faith in my infectious disease dr. to monitor the meds.

michaeld1 | @michaeld1 | Jul 29 3:45pm

In reply to @scratssun "Thank you. Valley Fever is a fungal infection in the lungs commly found in people living..." + (show)

I had valley fever back in 1999, I shall spare you the details but trust me. Have your doctor get aggressive with it! There’s knew medication out now clear that infection it might make it easier to treat the mac.
I also now have mac ugh

ljostroga1973 | @ljostroga1973 | Jul 30 12:56pm

I was checked 3 times for valley fever when trying to diagnose me. I never had it. However, the comment about listening to the Dr advice and potentially not the bloggers I will question as my ID Dr said nothing to me about ACTs boiling my water any precautions. Just told me to talk my meds. He didn’t do any susceptibility testing , any borderline testing. It had been 6 months since I had had a CT and any labs. I pushed for monthly labs and every 60 days CTs and sputum testing. Within 3 months of starting meds my x-ray had stabilized with the one almost a year before that. Within 4 months after meds 3 sputums came back negative. However my labs are all over the place. He has put things in my chart that aren’t true. Like continuous cough, never had one, loss of weight (haven’t lost a lb but have sure gained). The blogs have been my life saver in pushing my Dr getting advice questioning him. And yes I have tried to change drs. Basically impossible. And I have a mild case!

scoop | @scoop | Jul 30 2:24pm

In reply to @ljostroga1973 "I was checked 3 times for valley fever when trying to diagnose me. I never had..." + (show)

If incorrect info in your chart bothers you enough, it's possible to write to the hospital/clinic to submit corrections. FWIW, I notice incorrect info/outdated medications often on my chart. If inaccurate info impacts my care I would try to get it corrected. Otherwise I chalk it up to a wildly changed health care system with over worked care givers, doctors and otherwise.

pacathy | @pacathy | Jul 31 5:56am

In reply to @ljostroga1973 "I was checked 3 times for valley fever when trying to diagnose me. I never had..." + (show)

I agree with Rick about blogs vs medical advice. I believe the key is to strike a balance. I use these groups for helpful advice about living with the diseases, but also cringe (sometimes am horrified) at some of the advice I see given, esp when I followed another popular MAC blog briefly. A nice doc who sees people with these diseases every day is invaluable, IMO.

If you can get a consult with a specialty clinic to get a plan, even if it takes a while, I think it would be beneficial.

blm1007blm1007 | @blm1007blm1007 | Aug 1 9:45am

In reply to @ljostroga1973 "I was checked 3 times for valley fever when trying to diagnose me. I never had..." + (show)

I wonder if doctors have to list and say things in notes for proper coding for, you, for qualifying for certain types of approvals...be it equipment, meds, etc.??? However, some things are best corrected as scoop has said if you believe it needs to be.