Badges (1)

About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts (8)

Jun 29, 2016 · MAC - Get a second opinion! in MAC & Bronchiectasis

I was diagnosed by a pulmonologist in January of this year with MAC. I have written before about the 3 meds most of you are on that have this……I suffered and suffered with ALL of them….nausea, chills, leg cramps, night sweats and sometimes in bed 20 hours with 5 layers of clothing and 7 blankets over me!
About a month ago I went to see an Infectious Disease specialist and he took me off ALL meds, did a CAT scan…..AND today I got the results! Only one nodule in my lung and will not need to be checked for 12-18 months and I will not have to take ANY meds…..NONE! Folks, this is the power of lots of prayers and Him guiding me to a great doctor.!!!!! Thank you Lord! I also use “Thieves” essential oil from bulk apothecary.com in a $20 Walmart diffuser every night! I have felt better this past month than I have in a year! DO NOT SUFFER……get a second opinion!

Jun 15, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Finding a doctor who will TALK to you is the answer. I messed around with one for 6 months and yesterday found the right one. I took 5 pages of notes and he spent 55 minutes with me answering questions. I feel like I am on the right road now! Spent lots of $$$$ on drugs that he could not believe I was taking such high dosages of. True……he, too, says all of us need to get the drug companies to research MAI/MAC now that many of us are coming down with it………..wonder how we go about that? I will ask him the next time I see him!

Jun 15, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I have been dealing with this since it was finally diagnosed January 2016. I began the 3 drugs immediately and had all sorts of trouble with them. I was in bed for 17 hours one time with 5 layers of clothes on, deathly sick, screaming with leg cramps and sweating like I was a wet wash rag. I was immediately taken off the drugs and had more tests and I had bronchitis. Then put on another med for that. I have not been happy with my pulmonologist in Fayetteville, AR.
FINALLY……………yesterday…………………answers from Dr. Stephen Hennigan, an Infectious Disease Specialist! He sat and talked to me about this stuff for 50 minutes! He said I was taking too much of the meds…….high dosages! He took me OFF everything until I have a CT Scan of my lungs this Friday for him to evaluate. I do not know if any of you are believers in essential oils…….I wasn’t either……had never used them until I went for my mammogram about a month ago and the technician who I have known forever started telling me how great THIEVES essential oil is for tLhe immune system. Her bottle came from Young Living essential oils and I got mine from Bulk Apothecary. I put 4 drops in my diffuser right beside my nightstand and it runs for 5 hours……I am amazed………..and I mean amazed. I also put 2 drops in my last sip of coffee every morning (beware: it’s horrible tasting, but very safe). I told the doctor yesterday how much better I feel. He will evaluate my scan as soon as he can and then decide what to do about meds…..he did not even mention the main 3 that everyone takes………….he mentioned 2 totally different ones. I am going with this guy for sure! He also told me that there is a very good specialist on MAI/MAC in Tyler, TX if any of you are close there. I can also find out his name if anyone needs it!
So………………if you question your doctor…………………go see another one for a second opinion! I have Medicare and also a supplement that have paid for everything so far, once I met my $166 deductible for Medicare!
I asked the doctor if I was going to die and he said yes…..everyone is going to, but I am not going to die from MAI/MAC……………and I truly thought it was killing me! Hope this helps!

May 17, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Enjoy reading all this information as well. I was diagnosed in January of this year and I have had so much trouble taking the 3 meds. I am now trying essential oils, which seem to be helping. The meds were horrible……..even caused my teeth to turn orange…..I grabbed the Crest strips immediately! I am finding that cooler, damp/wet days are much harder than sun/warm days. The meds are so expensive, even with good insurance and they caused me to be in bed REALLY sick for 17-24 hours and being a school teacher I could not do this. I am getting an appointment with an Infection Control Doctor today and seriously considering changing from my Pulmonologist.

Apr 11, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I will plan to be there and will tell Mike, also.
Thanks!

Apr 10, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Please post the things you find out at your meeting please! This is crazy that there are so many with this stuff and no one has solid answers! Thanks! I am still soooooo puzzled how I got this……..I have NEVER been sick and it is still a mystery why I got soooo sick……3 1/2 months after being bite on my left hand (actually broke my hand) I get this crud. Did this biter carry something that was transmitted to me????

Apr 10, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I am right there with you! I have been in the 3 drugs for 3 months and feel worse than I did before I was diagnosed! Do you use a Pulmonologist or Infection Control
Doctor? My co-pay for the Rifabutin is $180 and I am in bed 16-18 hours after taking deathly ill……for at least 15 hours! Horrible! The APN took me off of this because I developed acute bronchitis. I started back on the Clarithromycin last week 3 times a week, Ethambutol last week and dread Tuesday coming where I start the Rifabutin! This is horrible! Even thinking about just going back to my family doctor…..cannot see where this Pulmonologist has done anything to help me!

Mar 26, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I am NEW to this MAI/MAC “stuff”. After nearly 9 months of suffering with what they thought was pneumonia and sinus-related illnesses my family doctor assumed since I was a school teacher I had been tested for TB each year. This is no longer required in the State of AR and when he did a TB test it was positive. I was immediately referred to our State Health Department who sent cultures in and I was diagnoed with MAI/MAC. This stuff is horrible! I began a regimen of 3 drugs 3 times per week and I did fine January & February on Rifampin, Clarithromycin and Ethambutol…still had bouts of nausea and feeling like I had the flu BUT NOTHING like I had when the Pulmonologist changed me from Rifampin to Rifabutin on March 8. I laid in bed screaming with leg/foot/toe cramps, had 6-8 layers of covers and heavy clothing on to keep warm, etc. Finally a week ago I called the Pulmonologist on call who took me off everything. I went in on Monday of this week for blood work and went back on Tuesday to see the APN, who was wonderful. She did a chest x-ray and I now have Acute Bronchitis and I am OFF the 3 meds and taking my last tablet of Levaquin today. Keep in mind……………….I am 65 and have NEVER been sick, other than a yearly sinus infection. Now I have been sick for a year! My major question, of course, is how I got this stuff! I know it’s from birds, soil, water…..BUT here is the deal. Seeing as though I have never been sick……I was bite by an autistic student at our school in December, 2014. BAD BITE! To the extent that my hand was broken and I have had to have surgery to remove scar tissue, etc. in October of 2015. It just seems “questionable” to me and my family if there is any way this disease could have been caused by this boy’s bite. He has very unsanitary habits and he literally tore my hand open and even broken a booth off in my hand. I am at a total loss how I got this horrible stuff. Do you all that have this take Priobiotics, supplements, etc. I am ready to try anything to get well. I have to start up the meds one at a time for a week sometime later this week and I dread this so much! I know that my Pulmonologist says no herbs or herbal drinks while I am on the meds. IF anyone out there can refer me to anyone who might have the answer if this is bite related please respond. I have several nurse friends who are leaning in this direction but my Pulmonologist refused to even listen to me about this being related. Just seems strange that I have never been sick and 4 months after a horrible bite I get deathly ill. I look forward to hearing any comments. Thank you so much! Linda