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Hyperbaric Therapy for MAC lung disease
Has anyone with MAC done hyperbaric oxygen therapy? It is suppose to be great for cognitive decline, long haul Covid and many other things. I feel like MAC patients have some symptoms in common to long haul Covid. I’m just wondering the effects on the lungs if you have MAC?
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@med08 Wow, you made me curious, so I went searching, because what you suggest sounds plausible. Some li tied research has occurred, but... nothing directly on NTM/MAC.
Maybe you can take this on, dive into all the reports about use hyperbaric therapy on infection, and see if there is a kernel in there. I would guess that with MAC deep in the lung, it might be hard to figure out what protocol to use and how to measure. Also, at least where I live right now, there is only one chamber within 100 miles, serving a population of over 3 million. Only one person at a time can use it. Might be an access issue.
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1 ReactionI too have wondered about HBOT. I was diagnosed 11years ago at Mayo by an amazing Dr Margaret Johnson. I was treated with trio antibiotics, did well & taken off after a year with MAC considerably reduced.
Last April after suddenly coughing up blood with no other symptoms I was hospitalized & absessus of lung was discovered. I received IV amikacin via Picc line for a 3 months but my heart rate & BP was irratic. I then went on oral trio, nebulizedARIKAYCE, nuzura & azrithromycin. Nuzyra gave me flu like symptoms including fevers & sweats & was switched to clofazamin.
I’ve since developed considerable tinnitus & stopped antibiotics altogether.
I’m 69 year old otherwise healthy active female, good appetite maintained with no weight loss.
I’m searching for any healthy support available eg., HBOT along with Dr recommended supplements.
HBOT is offered in my area
10 sessions 2,500
20 sessions 4,500
40 sessions 8,000
Any input would be greatly appreciated .
Sharon Sloane
What do your doctors say about trying Hyperbaric treatment? Do you still have active M. abscessus?
There still doesn't seem to be any good research on NTM and HBOT, but there are articles saying HBOT can reactivate latent Tuberculosis, which is another, closely related Mycobacteria:
https://pubmed.ncbi.nlm.nih.gov/29862947
Sue
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1 ReactionThank you for information Sue. If I understand this correctly my inclination to move forward with HBOT is off the table.
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1 ReactionDid your tinnitus resolve? Thanks.
Not yet. I’m seeing audiologist 4/30/24 to discuss
Please let me know of your audiologist evaluation. I've had two, both agree that profound hearing loss of high pitch sound. And I've developed tinnitus. I'm off the big three for 3 weeks to see if any improvement . I wish I had documented progression of hearing loss as I believe it began with using tobramycin many months ago. I believe hearing became worse after starting the big three in December , Hope things improve for you.
The potential for hearing and vision loss from antibiotics for MAC is small but devastating if it is your eyes or ears. That is why baseline screening and regular monitoring are so important.
Azithromycin is often the culprit with tinnitus. Mine has never improved after stopping it, but I have had tinnitus for many years, and it is just marginally worse after the meds.
Sue
Sounds scary as I'm on azithromiacin now .My Dr never said a word about all this stuff ,just give her another pill !!!