For the first time since 1997, I am able to inhale drugs for a reasonable length of time!!!! Since the beginning of June, I have been able to inhale 5% HTS, and, what's more, I have been able to inhale Glutathione twice daily after the HTS. I also have started on allergy drops for my allergies....like shots but more effective studies show. Has been the European way to treat allergies for years.....daily drops allow for serum levels to be maintained as opposed weekly shots where the patients serum leves drop by the next shot. I do believe this is helping my allergies but I have not eaven gotten to the maintainence dose, so any true benefit is still far away.....9 weeks to be exact.
Anyway, I can't tell you how amazing the change in my health is!!!! I believe that it is soley the inhaled gsh mainly because the allergy drops have not had enough time to work...only three weeks...while I have been on the inhaled gsh since June 15 or 16th. I have continued to be very productive with occasional dark plugs but mainly yellowish sputum that jus comes up the minute I start the HTS....the older stuff always starts coming up after about 5 to 10 minutes of gsh.
My peak flow and fev1 have gone up considerably since my clinic visit on 5/29. I have an at home meter that I use...now the values are not the same as clinic, but they are always spot on as far as upward or downward trends. OK, so my values on the home meter were FVC 360, FEV1 1.51.....that translated to FVC of 2.52 (64%) and FEV1 of 1.78...58% at clinic, the highest I have been since spring of '01. OK, after close to six weeks on gsh inhaled my meter at home reads FVC 400 and FEV1 1.56. This of, course, is the highest I have ever blown since I have owned this device and I have no idea what that would be at clinic. My guess is that my FEV1 is now in the low 60's....and my FVC is close 75% of predicted. My exercise tolerance is insane for me.....I jump rope for exercise...2 minutes on 0ne minute off for 30 minutes. All of the sudden I can go 3 minutes on, one off, and run sprints with no SOB. God is Good!!!!
My father and husband just returned from New York where they met with the top guys in the research and at the foundation. GOOD NEWS!!! The denufosol is more than they ever expected. The results are staggering.... Also, they have started an inhaled glutathione trial in Germany and have asked for Orphan drug status. This would have never been possible in the US because the FDA was making it very difficult and expensive..so they have given the money to the German Foundation so that they can get it approved over there faster.
They also asked me to be on the Adult Advisory Board.....my dad and husband laughed at that because my advice is always aginst what the doctors say and they will most likely kick me off after a week. hahahahaha!!!
My first idea on the board...do it like the Italians!!!! No clinic visits!!!! Only sick patient visits and healthy patients transmit weekly or bi-weekly PFT's from home units. They have cut down on cross contamination almost completely studies show.
One study I read recently about gsh from the Germans (same group CFF has authorized to do a long inhaled gsh trial) GSH is actually the catalyst that jump starts the immune rponse. While many of the studies have been looking at the inflammatory markers and oxidative status, this one focused on the immune response. They found that those inhaling GSH had a MARKED increase CD4 and CD8 lymphocytes....those are the cells essential in killing pathogens. So while the oxidative status remained the same, the pulmonary functions increased and the immune system (especially that which is crippled in cf) turned back on!!! This is huge!!!
Inhaled glutathione decreases PGE2 and increases lymphocytes in cystic fibrosis lungs.
Hartl D, Starosta V, Maier K, Beck-Speier I, Rebhan C, Becker BF, Latzin P, Fischer R, Ratjen F, Huber RM, Rietschel E, Krauss-Etschmann S, Griese M.
Department of Pediatrics, Ludwig Maximilians University, Munich, Germany.
Reduced glutathione (GSH), a major antioxidant and modulator of cell proliferation, is decreased in the bronchoalveolar lavage fluid (BALF) of cystic fibrosis (CF) patients. We previously have shown that GSH inhalation in CF patients significantly increased GSH levels in BALF and improved lung function (M. Griese et al., 2004, Am. J. Respir. Crit. Care Med.169, 822-828). GSH depletion in vitro enhances susceptibility to oxidative stress, increases inflammatory cytokine release, and impairs T cell responses. We therefore hypothesized that an increase in GSH in BALF reduces oxidative stress, decreases inflammation, and modulates T cell responses in lungs of CF patients. BALF from 17 CF patients (median FEV1 67% (43-105%) of predicted) was assessed before and after GSH inhalation for total protein, markers of oxidative stress (8-isoprostane, myeloperoxidase, and ascorbic and uric acid), pattern of protein oxidation, prostaglandin E2 (PGE2), and proinflammatory cytokines. BALF cells were differentiated using cytospin slides, and lymphocytes were further analyzed by flow cytometry. Inhalation of GSH decreased BALF levels of PGE2 and increased CD4+ and CD8+ lymphocytes in BALF significantly but had no effect on markers of oxidative stress. BALF lymphocytes correlated positively with lung function, whereas levels of PGE2 showed an inverse correlation. The patients with the greatest improvement in lung function after GSH treatment also had the largest decline in PGE2 levels. We conclude that GSH inhalation in CF patients increases lymphocytes and suppresses PGE2 in the bronchoalveolar space. Thus, GSH primarily affected the pulmonary immune response rather than the oxidative status in CF patients. The effect of GSH inhalation on PGE2 levels and lymphocytes in CF warrants further investigation.
Interestingly, these are the same cells (T-cells mainly CD4) that are killed off by the HIV virus....HIV/AIDS patients have low glutathione and actually they compare their lung secretions (end stage AIDS) to those of cf...like very thick jelly. They also experience many of the same lung pathogens that we do. I think we are finally on to something here!!! If we can turn back on the immune response we will be back in the right direction. I am more than excited about Denufosol....
One last thing you should know. At the cf meeting with the top guys, they made it very clear to my dad that in 5 years this will be like diabetes.....a bummer, but not life ending if taken care of.
Hope all is well!!!
Anyway, I can't tell you how amazing the change in my health is!!!! I believe that it is soley the inhaled gsh mainly because the allergy drops have not had enough time to work...only three weeks...while I have been on the inhaled gsh since June 15 or 16th. I have continued to be very productive with occasional dark plugs but mainly yellowish sputum that jus comes up the minute I start the HTS....the older stuff always starts coming up after about 5 to 10 minutes of gsh.
My peak flow and fev1 have gone up considerably since my clinic visit on 5/29. I have an at home meter that I use...now the values are not the same as clinic, but they are always spot on as far as upward or downward trends. OK, so my values on the home meter were FVC 360, FEV1 1.51.....that translated to FVC of 2.52 (64%) and FEV1 of 1.78...58% at clinic, the highest I have been since spring of '01. OK, after close to six weeks on gsh inhaled my meter at home reads FVC 400 and FEV1 1.56. This of, course, is the highest I have ever blown since I have owned this device and I have no idea what that would be at clinic. My guess is that my FEV1 is now in the low 60's....and my FVC is close 75% of predicted. My exercise tolerance is insane for me.....I jump rope for exercise...2 minutes on 0ne minute off for 30 minutes. All of the sudden I can go 3 minutes on, one off, and run sprints with no SOB. God is Good!!!!
My father and husband just returned from New York where they met with the top guys in the research and at the foundation. GOOD NEWS!!! The denufosol is more than they ever expected. The results are staggering.... Also, they have started an inhaled glutathione trial in Germany and have asked for Orphan drug status. This would have never been possible in the US because the FDA was making it very difficult and expensive..so they have given the money to the German Foundation so that they can get it approved over there faster.
They also asked me to be on the Adult Advisory Board.....my dad and husband laughed at that because my advice is always aginst what the doctors say and they will most likely kick me off after a week. hahahahaha!!!
My first idea on the board...do it like the Italians!!!! No clinic visits!!!! Only sick patient visits and healthy patients transmit weekly or bi-weekly PFT's from home units. They have cut down on cross contamination almost completely studies show.
One study I read recently about gsh from the Germans (same group CFF has authorized to do a long inhaled gsh trial) GSH is actually the catalyst that jump starts the immune rponse. While many of the studies have been looking at the inflammatory markers and oxidative status, this one focused on the immune response. They found that those inhaling GSH had a MARKED increase CD4 and CD8 lymphocytes....those are the cells essential in killing pathogens. So while the oxidative status remained the same, the pulmonary functions increased and the immune system (especially that which is crippled in cf) turned back on!!! This is huge!!!
Inhaled glutathione decreases PGE2 and increases lymphocytes in cystic fibrosis lungs.
Hartl D, Starosta V, Maier K, Beck-Speier I, Rebhan C, Becker BF, Latzin P, Fischer R, Ratjen F, Huber RM, Rietschel E, Krauss-Etschmann S, Griese M.
Department of Pediatrics, Ludwig Maximilians University, Munich, Germany.
Reduced glutathione (GSH), a major antioxidant and modulator of cell proliferation, is decreased in the bronchoalveolar lavage fluid (BALF) of cystic fibrosis (CF) patients. We previously have shown that GSH inhalation in CF patients significantly increased GSH levels in BALF and improved lung function (M. Griese et al., 2004, Am. J. Respir. Crit. Care Med.169, 822-828). GSH depletion in vitro enhances susceptibility to oxidative stress, increases inflammatory cytokine release, and impairs T cell responses. We therefore hypothesized that an increase in GSH in BALF reduces oxidative stress, decreases inflammation, and modulates T cell responses in lungs of CF patients. BALF from 17 CF patients (median FEV1 67% (43-105%) of predicted) was assessed before and after GSH inhalation for total protein, markers of oxidative stress (8-isoprostane, myeloperoxidase, and ascorbic and uric acid), pattern of protein oxidation, prostaglandin E2 (PGE2), and proinflammatory cytokines. BALF cells were differentiated using cytospin slides, and lymphocytes were further analyzed by flow cytometry. Inhalation of GSH decreased BALF levels of PGE2 and increased CD4+ and CD8+ lymphocytes in BALF significantly but had no effect on markers of oxidative stress. BALF lymphocytes correlated positively with lung function, whereas levels of PGE2 showed an inverse correlation. The patients with the greatest improvement in lung function after GSH treatment also had the largest decline in PGE2 levels. We conclude that GSH inhalation in CF patients increases lymphocytes and suppresses PGE2 in the bronchoalveolar space. Thus, GSH primarily affected the pulmonary immune response rather than the oxidative status in CF patients. The effect of GSH inhalation on PGE2 levels and lymphocytes in CF warrants further investigation.
Interestingly, these are the same cells (T-cells mainly CD4) that are killed off by the HIV virus....HIV/AIDS patients have low glutathione and actually they compare their lung secretions (end stage AIDS) to those of cf...like very thick jelly. They also experience many of the same lung pathogens that we do. I think we are finally on to something here!!! If we can turn back on the immune response we will be back in the right direction. I am more than excited about Denufosol....
One last thing you should know. At the cf meeting with the top guys, they made it very clear to my dad that in 5 years this will be like diabetes.....a bummer, but not life ending if taken care of.
Hope all is well!!!