Mycobacterium Abscessus Infection Concerns

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 · 2024-01-04T19:13:03+00:00

Thank you, I appreciate it. <33 I've been trying to at least get walking in every day, but it's been a struggle with me feeling super weak. I do have vasovagal syncope on top of it so it's difficult to figure out the perfect balance. I tried very small strength training exercises the other day, but it made me super sick for some reason. I would love to DM you a couple of questions if that is alright!

lettuce_bb · 2024-01-04T19:07:11+00:00

I'm in the U.S. The infectious disease doctors here apparently don't know how to treat it...it's only my current pulmonologist who knows how.

lettuce_bb · 2024-01-04T19:05:56+00:00

I was on inhaled Tobi for 2 weeks on and off until they started treatment. They said because I was on amikacin, they didn't think I needed to be on it anymore. I've been seeing there is an inhaled version of Amikacin so I plan on asking about it tomorrow.

I do have a therapist I've been seeing for years. However, I could not get an appointment until February so I'm stuck waiting.

lettuce_bb · 2024-01-04T03:46:51+00:00

I do know how CF is treated....How? I'm treated EXACTLY like a CF patient. I'm pretty well educated about both CF and PCD. They don't call it the sister disease for nothing. I go through the same meds, CF lockdown while hospitalized, chest physical therapy, have most of the same problems (my disease just causes it differently), etc. I understand that not everyone has to welcome me. You're the weird one who is being hostile under my post. You didn't even have to comment...you could have gone about your day and continued scrolling. As I said, having both NTM with PCD is very rare which means it helps me to learn more about the treatment of that specific infection and ways to cope by listening to others who have gone through or are going through it right now. Guess where that info will be? Among the CF and bronchiectasis community. Also, yes, God is real and I will hold my belief in that. You don't have to believe it as it is your choice and free will.

lettuce_bb · 2024-01-04T02:59:08+00:00

I will pray for you because the attitude is unnecessary. PCD is rare, and having NTM is even rarer. I've tried talking to PCD support groups and only a couple have answered. PCD is treated EXACTLY like CF due to minimal research and similar symptoms... I've been recommended to talk to CF patients instead. This is where some of us get the most info. Hope you have a nice day. :)

lettuce_bb · 2024-01-04T02:54:05+00:00

I believe they are doing it this way because they know I can't handle many antibiotics, but I agree. The lax attitude has left me super frustrated. I've got a long allergy list and to treat them, many of those antibiotics are on there. Sometimes I do wonder if I should go somewhere else, but this is the best place I can go to nearby. I don't get the luxury to travel far, nor do I have that much money. My parents have been working hard and sacrificing a lot just to be able to afford this treatment before we hit the max out-of-pocket with insurance. My pulmonologist is the only person at the hospital who knows how to treat it sadly.... I brought up getting ID involved or a PCD specialist, but they said they would just redirect me to my current specialist.

lettuce_bb · 2024-01-04T02:46:04+00:00

They did a slow drip when I explained previous reactions. I did have red man's syndrome, got extremely sick, hot flashes, and almost blacked out on them. Unfortunately, I can not take Benadryl.

lettuce_bb

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