Should I take Big 3 + inhaled ARIKAYCE

Kampo medicine case , extracted from above article: Hence, a bukuryoshigyakuto (Panax ginseng 1g, Aconiti tuber 1g, Glycyrrhizae radix 2g, Poria cocos 5g and Zingiber siccatum 2g) decoction (to infuse a total of 11 g of each herb with 400 ml of water for 30–40 min to make 200 ml, and to take in two divided doses) was started after a medical examination based on Kampo principles, while discontinuing the current treatment with clarithromycin, rifampicin and ethambutol. Within a few months, her eyesight improved, her gait disturbance also improved, and she no longer needed to use a wheelchair. Her appetite returned, and her hemoptysis and sputum gradually decreased. During the course of her treatment, she stopped taking bukuryoshigyakuto for a while due to the complexity of the decoction. She again recognized an increase in the hemoptysis and restarted the medication, and since then has never stopped it. Her HRCT image findings also improved. Although the middle lobe and lingular segment bronchiectasis showed no changes, bilateral centrilobular lesions and dorsal predominant bronchiolitis improved significantly (Figure 1B). Her body weight increased from 30 to 42 kg within 3 years after starting bukuryoshigyakuto. Her laboratory data also improved, to a neutrophil count of 2,880 /μl, lymphocytes of 1,063 /μl, albumin level of 3.9 g/dl and hemoglobin level of 11.4 g/dl (Table 1). Her shortness of breath, hemoptysis and sputum also finally improved, although she had some residual cough and slight numbness in her legs. Currently, continuing outpatient visits and bukuryoshigyakuto therapy have maintained her AFB smear and culture negative status

How can anyone afford Arikayce reading one post that is on Medicare which is what I'd be on was 6000.00 a month!

My aarp uhc part D does not cover arikayce but Wellcare part D does

Before I was prescribed Arikayce my first ID prescribed Zyvox as one of 3 and the pharmacy wasn’t filling it. I called and asked what the hold up was. It was $900 a month, my insurance didn’t cover. I found a coupon for $120. Ended up having a reaction to Imipenem IV and all meds were stopped first day. Wasted money.
Next ID prescribed Arikayce with iv Tigecycline and Bactrim. Again not being filled. She didn’t know it was a specialty drug and when I looked up the potential cost it was over $16,000 a month!! The IV med $600 ? A month.
I just threw in the towel. How do I find a competent doctor and affordable treatment? I’m a retired RN and thought I knew how to navigate the system. I’ve already had 3 IV lines. First two when they thought I just had pseudomonas. Then a PiCC line for Absessus that I used one day!!!!
Sorry I hijacked your post, but how do we afford this? When I’ve tried for help with Eliquis I am always just enough over in income to disqualify me. Same with Forteo for osteoporosis.

Oh what a story we hear way too often here on Connect "I just threw in the towel. How do I find a competent doctor and affordable treatment? I’m a retired RN and thought I knew how to navigate the system."

Please do not give up - you need to find a pulmonologist and ID doc who can handle the issue of failed treatment and the aggressiveness of M. Abscessus. Have you considered asking for a referral to a system near you that treats complex cases? Mayo (http://mayocl.in/1mtmR63), UT Tyler, Vanderbilt, National Jewish Health...

When my ID doctor prescribed Arikayce, he sent it directly to the specialty pharmacy or the manufacturer. I’m not sure which. The specialty pharmacy put me in touch with
The Assistance Fund (https://tafcares.org/), a non-profit that helps patients with high out-of-pocket medical costs. In a two-minute phone call, they asked two or three questions. The next day I was notified that they would cover the cost and I would have a copay of $10 per month. I paid the pharmacy $10 for each shipment. My insurance is somehow involved as well, as it appears on my Part D statement. TAF has a specific list of diseases they cover. MAC is on the list. It’s worth looking into.

Thank you, I did see that as a possibility. My ID unfortunately had no clue about what she was ordering. She ordered it from my regular pharmacy and was shocked at the cost. I’ve been put on the “back burner” while she investigates, plus my mother had just died when this all came about. I’m just trying to decide on my next step, another ID or what. This is year 3 of trying to diagnose and treat. Initial diagnosis was allergies and acid reflux after seeing 4 specialist! Next year switched doctors and actually had a culture. Pseudomonas. Over a year of treating and not treating until last September when I begged my doctor to admit me and figure this out. End of December finally got the Mycobacterium Absessus diagnosis.
On my second ID because the first one prescribed Amikacin IV twice a day after an allergic reaction to Imipenem. The kicker was I had to go to the hospital for the infusions and lab work. Who can do that twice a day for months? That is when i asked my PC to find me a new specialist. Liked her a lot, but obviously not a Mycobacterium specialist.
I know MAC doesn’t typically require IV meds, but Absessus does from my extensive reading.
All my other meds for pseudomonas were home infusions.
Sorry to ramble. Hoping someone who has any insight will chime in. Thanks again.

I am not sure whether you notice this peptide, which can be applied as an antibiotics, but much less side effects.

We can purchase capsules in AMAZON, which helps digestive problems and regulate immune system.
https://www.amazon.com/Life-Extension-Lactoferrin-apolactoferrin-Capsules/product-reviews/B000VI0NR6/ref=cm_cr_dp_d_show_all_btm?ie=UTF8&reviewerType=all_reviews

Who do I ask? I already asked my primary care doctor.
I live in coastal Alabama, so the Mayo Clinic in Jacksonville looks like the closest at 400 miles away. There are local doctors that treat MAC, but they use the same doctor I’ve already seen. I had switched to the University of South Alabama for my last treatment and that was going out of my comfort zone over an hour away. I was impressed at first, they had me getting a bronchoscopy within days, but the communication with the physicians was difficult. My ID doctor called to see how I was doing on my meds and I told her I still didn’t have a PICC line!! That’s when she asked if I had my Arikayce that my pharmacy can’t fill. Lost all my confidence.

You can ask either your primary care doc or pulmonologist for a referral to Mayo, or you can self-refer using the link I included.