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GlutathioneThis is a "guest" piece. I haven't personally used glutathione. Some people with CF have and seen benefits.Purpose: I want to detail my personal experience with glutathione (GSH) and provide some informational links to those who are interested in learning more about this antioxidant that the body naturally produces. My story: When I was 27 years old, my clinic PFT’s showed my baseline FEV1 was 85%. At that point in my life, I had never been on IV for a lung infection and I did not do inhaled nebulizers. I had only ever cultured Staph A, and I had a cough, but I was not doing recommended treatments of nebulized albuterol (for one reason or another). I became interested in some research that I heard about: the use of GSH for the treatment of Cystic Fibrosis. I did some reading on the topic and tried to have a discussion with some of the doctors at my clinic. I was told: “we do not recommend this treatment as there is not enough research on it.” I am all for compliance, but, the reasons given to me must make sense. I persisted with my own research online and asked about it at another clinic appointment. I was told the same thing. My reasoning: I decided to try GSH myself without doctor support. A major factor in that decision for me was that my body (everyone’s body) naturally produces this GSH. Because of the CFTR problem, my GSH did not get to where it was supposed to be in my body. I perceived that taking glutathione pills was essentially a supplement like the vitamins that I have taken all of my life. I found this website with a group of people (parents of patients with CF and adult CF patients) that were documenting their individual experiences and having discussions about the use of GSH and other alternative CF treatments. This group was very helpful and it was nice to have some form of support for my new "adventure". My results: My plan was to take GSH pills orally for exactly one year and see what happens. I started to take the pills and gradually increase to the protocol dosage for my body weight. During this year of my "test", I was not on any oral antibiotics and did not introduce any new CF treatments into my routine. (I was exercising regularly as I had been for 4 years at that point.) At each clinic appointment, I would see a slight improvement of my FEV1 ! This encouraged me to stick to my plan. After one year on oral glutathione pills, my FEV1 was 97% !!! In one year I had increased 13% and I was 28 years old. One of my physicians finally said “you have to tell me what you are doing.” So, I caved and confessed. She was very surprised. After telling her about the dosage I was taking (3500mg per day), her eyes kind of bugged out of her head. ( I was 120 pounds at the time) She said that while I had tremendous results from it, that is a high dosage and there is not a lot of research on it. I couldn’t argue with that – it was a fact. At that time I decided to decrease my dose but not because of what she said to me (I had known that all along!), I was tired of taking pills daily at 8am, Noon, 4pm, and 8pm! I was a stickler for taking the pills every 4 hours (because it was a test for me). With my active lifestyle and working 40 hours a week, it was challenging to stay on time with my pills. My current experiment for 2011: It has been 8 years since my "experiment" with this protocol. I have taken a much lower dosage since then and this past year, did not even take GSH pills. My baseline FEV1 is still considered to be about 96%. However, it has not been an uneventful 8 years for my CF. I have been on IV about 5 times, I have cultured new things like Pseudomonas A (PA), Aspergillus, Serracia M, and Stentrophamonas Maltophilia. (Please excuse the misspellings!) I was recently treated for Steno in my culture with 6 weeks of Bactrim. I feel much better, but, for the past year I have felt different. I need more maintenance to keep my lungs feeling healthy. My doctor is satisfied with ending the treatment for Steno at this point as my FEV1 is back at baseline. However, it’s still in my culture. I am not happy with that and I have decided to turn back to GSH at this time. I have only been back on it for a week. I started with one GSH pill per day for this week and I have added in something new: Inhaled GSH. Years ago I did not do this because I was not used to nebulized treatments and the one time I tried it, I was turned off by the smell. However, now that I am used to doing daily treatments, I decided to try it again. Immediate results from inhaled: After 2 treatments of inhaled GSH, I had a sudden cough attack on the morning of day 3. It didn’t last long, but I think I coughed up some plugs. Since coughing that junk up, I haven’t wheezed at night or needed to rely on my Xopenex inhaler during the day. This is interesting to me since I have only done one treatment per day (HS, Pulmo, Vest, inhaled GSH) whereas most of this year I was doing two treatments per day (HS and TOBI). The only new element this week has been the GSH and I feel so much better. My next clinic check-up is in March. I plan to tell my doc that I am doing the inhaled version (just to keep them in the loop). I have the feeling my FEV1 will be back to baseline (97%) without the help of a broncodiolator (xopenex).
If you gradually work up to a high dose of GSH and decide to stop for whatever reason, gradually decrease your dosage. Dr. Bishop mentions if you are prone to bleeds (See #8) to be careful with GSH I have encouraged various friends with CF to give GSH a try since my positive experience. None of them reported having the dramatic results that I experienced. Some found that NAC (N-Acetyl-Cysteine) works better for them and it is less expensive. I think like any other therapy that we use to fight our CF, we have to find what works best for us. (Some people cannot tolerate TOBI and that was a key medication in my fight with PA.) Good luck in researching the benefits of glutathione. If you have any questions about my experience, feel free to email me! Warmly, Denise Figliozzi Kruse Reprinted with permission of the original author, January 2011 |
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