Alternative Treatments for MAC: immunotherapy, etc.

@maureengdds , did your mom try Red Light Therapy? Some people in this group have added it to their toolbox and they seem to be happy with the results.
Some doctors used it successfully on Covid lungs also. There are some YouTube videos on it (e.g. dr. Anderson, etc).
It seems to be quite helpful at reducing inflammation in the lungs. If there is less inflammation, there is less infection (I do believe this, but I could be wrong).
Best wishes of great health to all of us!

@bayarea58 Using light therapy for the lungs is NOT new. In Europe, people with tuberculosis at the beginning of the 20th century were sent to sanatorium, where besides good nutrition, rest and respiratory therapy, they were purposely exposed every day a limited amount of time to full spectrum sun rays. Dr. Anderson explains clearly the science behind the red and infrared light therapy. He seems to recommend the pads you can wrap around the chest. I have not found one yet, don't have much time to look for it (I still work full time), but it's on my mind a LOT. There are some advertisements/illustrations that pop up during his talks, where you see pads, panels, lamps, etc. One woman in this group said she was using a Platinum panel with success. Another one has a Hooga Panel and she seemed happy with the results too. PLatinum seems to be high quality but very expensive. No data on Hooga.
I got a Platinum biomax 600 panel in the fall. I started using it around Thanksgiving. I do believe it has been helping me. I started using it every three days for 3 minutes front, 3 minutes back. I have been increasing very slowly. Now I do 3 minutes front and 4 minutes back plus 2 minutes on my right side. My goal is to never go above 12 minutes total. I am still on the every three days schedule and do not intend to change that. Red light therapy raises atp and raising atp is great until a certain level, then it becomes problematic. (too much of a good thing...). So I believe I am in the safe zone and intend to stay in that zone. Maybe I would get faster results if I were to increase more, but slow progress works for me at this point.
My lung doctor had given me the ok to get a panel back in the fall, but did not give me any directions at all. I have a follow-up appointment in the spring with him, we'll see if the CT shows progress then.
Best wishes of great health to all of us!

@gigiv this is the first I am learning of red light therapy and lung health. I know many use for chronic pain and I have been curious about it in this regard but the science of it, and all the marketing around it, have put me off just in terms of working through it and understanding what I need and buying the right equipment. I am curious in others experience with red light therapy, for any use really, but particularly as regards their lung function. Any recommendations on red lights themselves would also be very helpful. Thanks.

Hi Irene! I understand your concern but when a person is drastically underweight with BE/NTM the primary concern is supporting the body with nutrition. Certainly, finding a supplemental drink that you feel works for you is ideal. Here are some options:

VHC or Boost Plus
Ensure EnLive/Plus
Bolthhouse Farms ProteinPlus
FairLife (lactose-free, high-protein shakes)
Kate Farms 1.5 (plant-based) - not very sweet
Orgain (plant-based options) - not very sweet

ConsumerLab.com's *Top Picks* for protein powders:
Now Sports Pea Protein Pure Unflavored - Overall Top Pick
PB&Me
Nutiva Hemp protein powder
Jay Robb Egg White Protein
Nutricost Grass-Fed Whey Protein Isolate — Unflavored (should be lactose-free because it's an isolate)
(Also approved = VegaOne French Vanilla)

Let's get some thoughts from others? Do you have a drink that you like? is it both high protein and high calories?

Best, Linda Esposito

@bayarea58 Using light therapy for the lungs is NOT new. In Europe, people with tuberculosis at the beginning of the 20th century were sent to sanatorium, where besides good nutrition, rest and respiratory therapy, they were purposely exposed every day a limited amount of time to full spectrum sun rays. Dr. Anderson explains clearly the science behind the red and infrared light therapy. He seems to recommend the pads you can wrap around the chest. I have not found one yet, don't have much time to look for it (I still work full time), but it's on my mind a LOT. There are some advertisements/illustrations that pop up during his talks, where you see pads, panels, lamps, etc. One woman in this group said she was using a Platinum panel with success. Another one has a Hooga Panel and she seemed happy with the results too. PLatinum seems to be high quality but very expensive. No data on Hooga.
I got a Platinum biomax 600 panel in the fall. I started using it around Thanksgiving. I do believe it has been helping me. I started using it every three days for 3 minutes front, 3 minutes back. I have been increasing very slowly. Now I do 3 minutes front and 4 minutes back plus 2 minutes on my right side. My goal is to never go above 12 minutes total. I am still on the every three days schedule and do not intend to change that. Red light therapy raises atp and raising atp is great until a certain level, then it becomes problematic. (too much of a good thing...). So I believe I am in the safe zone and intend to stay in that zone. Maybe I would get faster results if I were to increase more, but slow progress works for me at this point.
My lung doctor had given me the ok to get a panel back in the fall, but did not give me any directions at all. I have a follow-up appointment in the spring with him, we'll see if the CT shows progress then.
Best wishes of great health to all of us!

I am not familiar with Dr Anderson, or his experience with NTM or other lung infections, but the discussion of Red Light Therapy arises from time to time in this group, and I would like to cite one study about efficacy for your consideration:

This was published in 2021 in the Journal of Communicative and Integrative Biology, and was specifically done in response to finding treatments for lung infections like Covid-19.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8451450/
I have extracted two sections from this long article for those who do not wish to plow through 30 plus pages.
" 4.2. Practical considerations for use of infrared therapy to treat lung illness
Unlike most current applications of photobiomodulation therapy, treatment of lung inflammation requires deep, uniform penetration of light into the chest cavity. Unfortunately, many LED-based photobiomodulation devices on the market do not provide either the necessary intensity or a suitable wavelength for deep tissue penetration. Red light, for instance, does not effectively penetrate beneath the skin surface and generates high heat, as is true also of infrared heating lamps or incandescent bulbs, which emit at wavelengths above 900 nm. Exposure to many such lamps at the intensities necessary for chest therapy would result in burns to the skin, for example, an incandescent infrared light. Further practical considerations are with respect to the time-dependence of the therapy. Exposure times have to be quite precise, as even 5-min variation renders the treatment ineffective (Figure 2). However, we did not find a significant decrease in effectiveness even at much higher light intensities (Figs.3, 4), suggesting that too much light intensity is not a problem, and only the duration of exposure is critical. Thus, the main challenge is providing a uniform illumination at a high enough intensity to the patient’s thoracic cavity.

We have used a wavelength at 720–750 nm in our study as this provides penetration of tissue without engendering heat and has optimal effects on TLR4-dependent inflammation.

To achieve maximum effectiveness, a further consideration is the timing factor; all sections of the lung should be uniformly illuminated over a single optimal 10 m time interval. Therefore, light sources for an eventual treatment should be arranged to illuminate the entire chest surface as uniformly as possible, and from front and back simultaneously. This can be achieved, for instance, using four suitably positioned LED bulbs or two suitably positioned LED floodlights (Figure 6). Since most commercially available photobiomodulation devices do not fulfill the high output requirements, we caution against using them without first testing their wavelength and intensity to determine if they are suitable. The same considerations also apply to the use of photobiomodulation lasers."

In the conclusion they state: "However, no large-scale clinical trial data are currently available, which will bring this therapeutic intervention into the mainstream. We hope that our results will help to provide a roadmap for which factors of wavelength, intensity, and most critically the time interval of light application are crucial so as to develop an optimal treatment protocol in patients."

I have also reviewed Google Scholar for more recent studies, and there don't seem to be any.

So, appropriate red-light therapy may help in reducing lung infection, but it seems the light spectrum, intensity and time of exposure are critical. It also appears that most of the "home units" are inadequate for penetrating deeply enough (through skin, muscle and bone) to be effective.

Does anyone have information about other studies, either completed or in process, studying this therapy for lungs?

Sorry Sue- M. D. Anderson Cancer Center Hospital in Houston.
Barbara

Thanks for the reply, Barbara - but nothing I read there (or anywhere else) indicates there is a current, effective home treatment that is effective on lung tissue.
I stand with my earlier statement that, like many other newer therapies, this one is "not ready for prime time" - especially using devices available on-line without a prescription, and being used without medical supervision because there can be significant risks to improper use of infrared lights.

I am not familiar with Dr Anderson, or his experience with NTM or other lung infections, but the discussion of Red Light Therapy arises from time to time in this group, and I would like to cite one study about efficacy for your consideration:

This was published in 2021 in the Journal of Communicative and Integrative Biology, and was specifically done in response to finding treatments for lung infections like Covid-19.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8451450/
I have extracted two sections from this long article for those who do not wish to plow through 30 plus pages.
" 4.2. Practical considerations for use of infrared therapy to treat lung illness
Unlike most current applications of photobiomodulation therapy, treatment of lung inflammation requires deep, uniform penetration of light into the chest cavity. Unfortunately, many LED-based photobiomodulation devices on the market do not provide either the necessary intensity or a suitable wavelength for deep tissue penetration. Red light, for instance, does not effectively penetrate beneath the skin surface and generates high heat, as is true also of infrared heating lamps or incandescent bulbs, which emit at wavelengths above 900 nm. Exposure to many such lamps at the intensities necessary for chest therapy would result in burns to the skin, for example, an incandescent infrared light. Further practical considerations are with respect to the time-dependence of the therapy. Exposure times have to be quite precise, as even 5-min variation renders the treatment ineffective (Figure 2). However, we did not find a significant decrease in effectiveness even at much higher light intensities (Figs.3, 4), suggesting that too much light intensity is not a problem, and only the duration of exposure is critical. Thus, the main challenge is providing a uniform illumination at a high enough intensity to the patient’s thoracic cavity.

We have used a wavelength at 720–750 nm in our study as this provides penetration of tissue without engendering heat and has optimal effects on TLR4-dependent inflammation.

To achieve maximum effectiveness, a further consideration is the timing factor; all sections of the lung should be uniformly illuminated over a single optimal 10 m time interval. Therefore, light sources for an eventual treatment should be arranged to illuminate the entire chest surface as uniformly as possible, and from front and back simultaneously. This can be achieved, for instance, using four suitably positioned LED bulbs or two suitably positioned LED floodlights (Figure 6). Since most commercially available photobiomodulation devices do not fulfill the high output requirements, we caution against using them without first testing their wavelength and intensity to determine if they are suitable. The same considerations also apply to the use of photobiomodulation lasers."

In the conclusion they state: "However, no large-scale clinical trial data are currently available, which will bring this therapeutic intervention into the mainstream. We hope that our results will help to provide a roadmap for which factors of wavelength, intensity, and most critically the time interval of light application are crucial so as to develop an optimal treatment protocol in patients."

I have also reviewed Google Scholar for more recent studies, and there don't seem to be any.

So, appropriate red-light therapy may help in reducing lung infection, but it seems the light spectrum, intensity and time of exposure are critical. It also appears that most of the "home units" are inadequate for penetrating deeply enough (through skin, muscle and bone) to be effective.

Does anyone have information about other studies, either completed or in process, studying this therapy for lungs?