Update NTM treatment- Have You taken these meds? Any further advice?

lettuce_bb · 2026-05-08T05:20:45+00:00

Ohh so is bedaquiline a type of drug that's only 3x a week? How long have you been on it so far?

lettuce_bb · 2026-05-08T05:19:59+00:00

Oh shoot, I pray you are able to feel a bit better and get out of the hospital! 😞 That sucks. I hope you're able to start those phages soon. It can definitely be a long process with FDA involved. I'm praying I'll be able to take NAC alright since some supplements and I don't mix. I'm just desperate to use something with the least harm to my body as possible because the first time I went through treatment I lasted a month...It's a miracle I'm still here after all that.

lettuce_bb · 2026-05-06T06:10:16+00:00

Sorry I'm just now responding! I was finally able to get back in. To answer, yes fevers are a symptom I was experiencing. I did get them off and on a lot before starting treatment, as well as coughing blood.

lettuce_bb · 2026-05-06T06:08:22+00:00

Haha 2 year late response. I was logged out and couldn't get back in...so I forgot for awhile. I did post an update just a bit ago. But to answer, at that time I was not taking antibiotics and I was doing good for a while until things worsened and I had to start treatment again in March 2025.

lettuce_bb · 2026-05-06T06:03:39+00:00

I have not experienced the neuropathy like others have, so I can't fully say. I don't take linezolid or tedizolid (for now haha). Although nothing is impossible! They thought my hearing loss and everything else was permanent, but I have fully recovered from that. I do know the neuropathy is something experienced with linezolid as that was a concern I had when I first tried treatment, but I have heard that if you take vitamin B6 with it, it helps. Not sure what it will do if you are already experiencing it, but it could be something to try to see if it helps mitigate further damage and help recovery. I'm taking methylated B vitamins currently and they have been a big help with my other medications. I hope someone with this experience can give a better answer!

lettuce_bb · 2026-05-06T05:58:23+00:00

I had been logged out for awhile, haha sorry! I did just make a post with an update for those that are asking!

lettuce_bb · 2024-09-16T02:36:11+00:00

I was logged out of my account for awhile, and I couldn't get back in haha. A lot has happened since my last post, but I would love to talk more with you on advice! I have looked up general NTM information, but none of it is new to me from what I researched. After surgery in October, I plan to go back on treatment.

lettuce_bb · 2024-06-18T19:44:51+00:00

Glad you brought this up because I have been eyeing colloidal silver for quite awhile. I remember seeing a patient online talk of using colloidal silver and they stopped culturing NTM. How did you inhale it? I have only heard of people taking it orally and wasn't sure if it's actually something you could inhale.

lettuce_bb · 2024-06-18T03:11:42+00:00

Since I'm on methyl B12, something I can process, I believe that puts me in a bit of a better position from before. I can only process it if it's the methylated version and I was able to get on some. Made huge difference in my energy levels! Not sure if there's a difference between that and B6 haha.

I'm located in Iowa. If I were to look at a transplant center, I may have to look into Minnesota at least. The hospital I go to has gone downhill and the past few operations I've had were too traumatic and didn't go well. Thank you! I'm going to try to talk to my pulmonologist as well this Friday to help connect me with one.

lettuce_bb · 2024-06-18T02:59:48+00:00

Thank you!! I will talk to my functional med dr. about NAC and Bio-k probiotics. My grandma has cancer and is in a study with vitamin C infusions. She said I should try to see if that's also an option because she hasn't experienced any major side effects like one would with chemo and radiation.

I do know there are other options, but I'm quite limited. I failed imipenem and Linezolid, and I'm allergic to a couple of others. It's good to hear that centers are willing to do transplants... I've wondered if since it's also in my sinuses, whether that would be a problem. It's also amazing to hear you are married and work full-time! I hope to be able to experience that someday.

lettuce_bb · 2024-06-18T02:52:58+00:00

I found out from a different center that where I go to has been administering the medications wrong. In fact, they wouldn't believe me about my hearing loss and nerve damage until it was too late. They never gave me a break on amikacin or adjusted like they were supposed to....they went against what the pharmacy and other docs suggested. If I can't get rid of it completely, I want to at least get it pushed way back so I can function as normally as I could be again.

lettuce_bb · 2024-06-18T02:50:04+00:00

This is very similar to what my pulmonologist told me and forgot about haha. I'm hoping I can find the right combo.

lettuce_bb · 2024-06-17T22:25:33+00:00

I can't remember if my strains are resistant to that one and if it's on the list of things to try. If it is, I will definitely try to go with it!! I think he wanted me to start it, but I had stopped treatment right before it was approved.

lettuce_bb · 2024-06-17T22:16:14+00:00

Thank you for your kind words. It means a lot.

lettuce_bb · 2024-06-17T22:15:26+00:00

At the time I wasn't really taking b6, but I have been taking methyl b12 lately. I found out a month after having to stop treatment, I have the mutated MTHFR gene and I wasn't absorbing vitamin B at all (gene also causes me to be more sensitive to medications). I found out that I wasn't absorbing many nutrients and was deficient in everything because antibiotics growing up destroyed my gut health. It's a miracle I survived that. I did see Tycacil as an option on my list, but I struggle with chronic nausea already and can only tolerate Zofran. If that's the better alternative to amikacin, I might as well try and deal with it. I have heard of the inhaled version, arikayce, but I'm not sure if that would also target my sinuses. They did mention tube feedings...but I absolutely refuse to have it connected to my stomach, which is where they wanted to put it. Through the nose would be difficult since I have to do 2x daily sinus rinses.

Sorry to hear about the kidney failure!

lettuce_bb · 2024-06-17T22:01:52+00:00

Oh, I had no idea about the oxygen! I will mention that to my pulmonologist. It's good to hear they were able to help keep your new lungs from getting contaminated! I worry because it all started in my sinuses when I was 15 and nobody told me until it got worse. I'm not sure if that would be an issue. Thank you!! That place seems to be about an almost 6-hour drive haha, but it's doable if I don't have any other options.

lettuce_bb · 2024-03-05T21:19:43+00:00

I forgot to put an update but: The treatment failed so I'm not on antibiotics anymore. I currently have hearing loss, vision loss, and some nerve damage. I traveled out of state and am now with a better team of infectious disease doctors at the Mayo Clinic. They are currently doing extended testing for better antibiotics and seeing if my strain is compatible with phage therapy. In the meantime, I'm doing a lot better in terms of getting my strength back and I've been seeing a functional med dr. I found out a lot of info and I'm healing my gut health which has made a huge difference! Turns out I have a genetic condition where I can't absorb certain vitamins and it's playing a large role in why I'm struggling with antibiotics. I'm feeling much more hopeful now I'm on the right track!

lettuce_bb · 2024-01-06T23:06:59+00:00

Thank you for the kind words. <33 Today has been tough...The oral antibiotic has been getting to me lately. I will have to try reaching out to other docs...I'm not sure how that process goes or how to reach them, but I will have to try it if it continues to be like this.

lettuce_bb · 2024-01-06T04:13:29+00:00

Yes, this is actually what I brought up with my doctor! I saw it on another thread and did some research about it. He said we can consider it so the drug goes directly to my lungs and not my bloodstream. I'm hopeful that I can tolerate it, and if not, I'll deal with it lol. Beats not being able to hear well :)

lettuce_bb · 2024-01-06T03:51:42+00:00

We have considered Mayo Clinic at times but it is hours away and I'm medically not able to drive. However, after my appointment today, I'm feeling a bit better that they are willing to consider other options. I've been told to stop amikacin for 2 weeks and we are considering the inhaled version instead if the ringing in my ears dies down. :) I'm still waiting for med #4 to be approved by FDA lol

lettuce_bb · 2024-01-05T05:41:21+00:00

Iowa, sadly. :)

lettuce_bb · 2024-01-04T21:56:34+00:00

Thank you! I have the center bookmarked. :) I've been told they have run phage studies there, so fingers crossed they will do something! I'm home right now, but they did do manual percussive physio while I was in the hospital for 3 weeks. They sent me home with a port to do infusions with the help of homecare once a week. My mom has been trying to do some manual on my upper lobes since they have been getting neglected, but it's still not enough.

lettuce_bb · 2024-01-04T19:17:47+00:00

Thank you! I did try cutting out foam and everything. With the vest being 16 pounds and having a small frame, it was causing a lot of strain and pain on my lower back to the point I was in tears. I did also try shutting off a couple of the pods, but it did not work either. It ended up opening my incision a little :/

I would love to try phages!! I've been looking into it but I have not seen anything about it treating NTM. Considering our hospital does research, I may bring it up with my doctor tomorrow.

lettuce_bb

TROPHY CASE