re: Grommes (repost as 1st and 2nd ones never made it)

[Guest guest]

Bob,

The news of 's passing made me very sad. She obviously had such a fantastic ally by her side, not just a sympathetic husband (which many here don't necessarily have), but a true fighter to fight her battles with her. It didn't save her life but it must've taken away a lot of the anxiety involved in this horrible illness, it probably gave her the feeling that everything humanly possible was being done. It probably allowed her to let go peacefully when she couldn't take more pain.

Bob, I've always admired your dedication and your intelligence in dealing with all this, juggling all the various parameters with great skill and courage. Like Penny, I understand your wanting to "take a long break/vacation" from all of this. But if you do want to keep on sharing with us, here on I and I or elsewhere please do, you have learnt a lot and we all value your comments.

Nelly (in Paris-France)

[infections] Grommes

List,My wife, , passed away this week. As you know if you've read my posts in the past, she had a long struggle with ME / CFS and more recently severe MCS and complications thereof, and at the end, gall bladder problems. She just didn't wake up one morning. She was 54 years old and had been ill for 31 of those years, and disabled the last 25. Yes, the flu-from-hell-that-lasted-six-months-but-never-really-went-away that started this whole thing, happened when she was still a young adult and just getting her career as a systems analyst underway (ironically, she worked for Upjohn, which after a series of mergers has now become Pfizer).As you all know, the above is in large measure another way of saying that she had multiple infections throughout her body. We can save the debate for another day as to to what extent infections were a cause or an effect of her illness. At least doesn't have to puzzle the question any more. To be frank, she had gotten rather tired of it. For her it had become a question without answers, because as a universal reactor, there were very few antibiotics she could tolerate. In the end, Biaxin, unfortunately, was about it, and that was very hard on her stomach as it was. Her doctor was trying a "hail pass" with Valcyte because she fit the profile for possible benefit from that drug (sudden-onset of ME, immune-activated, certain viral titers high). She died before she had a chance to start it, but I very much doubt it would have been tolerated, considering that the product literature warns you to wash your hands immediately with soap and water, should you touch a broken or crumbled pill. That does not sound like a recipe for success in treating a chemically sensitive patient.In retrospect we wish we had a crystal ball in the1990s before she got painted into such a terrible corner by the MCS, and could have pursued aggressive antibiotic and antiviral therapies before she became too frail to handle the side effects. But really, there was back then to our knowledge (a) few if any doctors into that angle and ( we had every reason to hope she would continue on a stable plateau as she had for years already. The fatal mistake was that she "made peace" with the illness and the illness did not uphold its end of the peace accord.'s love for life kept her going I think for several years beyond what most people would have lasted. She was a fighter. I am honored to have shared her live and love these past 13 years. I could go on for many paragraphs about what she managed to accomplish and the lives she touched in spite of being so ill -- far more than most healthy people, really. She was a very special person, to many, many others, not just me.I'm heading to Michigan for memorial services in a few days, and I haven't yet sorted out how I feel about my involvement with this and related lists I've followed, and with various activist or supportive things I could do for people like . As you can imagine a significant part of me wants to take very long vacation from the struggle, and maybe even pretend it was all a bad dream. Another part wants to give meaning to her death by lending myself to the fight. I guess we'll see which side wins out in the coming weeks and months.Regardless -- thank you all for being a resource, a sounding board and sometimes, just listening, these past months.Best,--Bob Grommes

[Guest guest]

HI Nelly, I've received all of your posts. Perhaps you mail is putting them in your spam box because they're coming through okay. pennyNelly Pointis <janel@...> wrote: Bob, The news of 's passing made me very sad. She obviously had such a fantastic ally by her side, not just a sympathetic husband (which many here

don't necessarily have), but a true fighter to fight her battles with her. It didn't save her life but it must've taken away a lot of the anxiety involved in this horrible illness, it probably gave her the feeling that everything humanly possible was being done. It probably allowed her to let go peacefully when she couldn't take more pain. Bob, I've always admired your dedication and your intelligence in dealing with all this, juggling all the various parameters with great skill and courage. Like Penny, I understand your wanting to "take a long break/vacation" from all of this. But if you do want to keep on sharing with us, here on I and I or elsewhere please do, you have learnt a lot and we all value your comments. Nelly (in Paris-France) [infections] Grommes List,My wife, , passed away this week. As you know if you've read my posts in the past, she had a long struggle with ME / CFS and more recently severe MCS and complications thereof, and at the end, gall bladder problems. She just

didn't wake up one morning. She was 54 years old and had been ill for 31 of those years, and disabled the last 25. Yes, the flu-from-hell-that-lasted-six-months-but-never-really-went-away that started this whole thing, happened when she was still a young adult and just getting her career as a systems analyst underway (ironically, she worked for Upjohn, which after a series of mergers has now become Pfizer).As you all know, the above is in large measure another way of saying that she had multiple infections throughout her body. We can save the debate for another day as to to what extent infections were a cause or an effect of her illness. At least doesn't have to puzzle the question any more. To be frank, she had gotten rather tired of it. For her it had become a question without answers, because as a universal reactor, there were very few antibiotics

she could tolerate. In the end, Biaxin, unfortunately, was about it, and that was very hard on her stomach as it was. Her doctor was trying a "hail pass" with Valcyte because she fit the profile for possible benefit from that drug (sudden-onset of ME, immune-activated, certain viral titers high). She died before she had a chance to start it, but I very much doubt it would have been tolerated, considering that the product literature warns you to wash your hands immediately with soap and water, should you touch a broken or crumbled pill. That does not sound like a recipe for success in treating a chemically sensitive patient.In retrospect we wish we had a crystal ball in the1990s before she got painted into such a terrible corner by the MCS, and could have pursued aggressive antibiotic and antiviral therapies before she became too frail to handle the side effects. But really, there was

back then to our knowledge (a) few if any doctors into that angle and ( we had every reason to hope she would continue on a stable plateau as she had for years already. The fatal mistake was that she "made peace" with the illness and the illness did not uphold its end of the peace accord.'s love for life kept her going I think for several years beyond what most people would have lasted. She was a fighter. I am honored to have shared her live and love these past 13 years. I could go on for many paragraphs about what she managed to accomplish and the lives she touched in spite of being so ill -- far more than most healthy people, really. She was a very special person, to many, many others, not just me.I'm heading to Michigan for memorial services in a few days, and I haven't yet sorted out how I feel about my involvement with this and related lists I've followed, and with various

activist or supportive things I could do for people like . As you can imagine a significant part of me wants to take very long vacation from the struggle, and maybe even pretend it was all a bad dream. Another part wants to give meaning to her death by lending myself to the fight. I guess we'll see which side wins out in the coming weeks and months.Regardless -- thank you all for being a resource, a sounding board and sometimes, just listening, these past months.Best,--Bob Grommes

[Guest guest]

Sorry Penny, we had problems with mails not reaching us and mails not getting to their destination last few days, so as mine were not appearing in my mail box I just assumed they had not got to I and I.

They're not in my spam box either, and neither are all the other mails that I are not getting to me. Things seem a bit better today, so hopefully things are righting themselves at my end

Nelly

[infections] Grommes

List,My wife, , passed away this week. As you know if you've read my posts in the past, she had a long struggle with ME / CFS and more recently severe MCS and complications thereof, and at the end, gall bladder problems. She just didn't wake up one morning. She was 54 years old and had been ill for 31 of those years, and disabled the last 25. Yes, the flu-from-hell-that-lasted-six-months-but-never-really-went-away that started this whole thing, happened when she was still a young adult and just getting her career as a systems analyst underway (ironically, she worked for Upjohn, which after a series of mergers has now become Pfizer).As you all know, the above is in large measure another way of saying that she had multiple infections throughout her body. We can save the debate for another day as to to what extent infections were a cause or an effect of her illness. At least doesn't have to puzzle the question any more. To be frank, she had gotten rather tired of it. For her it had become a question without answers, because as a universal reactor, there were very few antibiotics she could tolerate. In the end, Biaxin, unfortunately, was about it, and that was very hard on her stomach as it was. Her doctor was trying a "hail pass" with Valcyte because she fit the profile for possible benefit from that drug (sudden-onset of ME, immune-activated, certain viral titers high). She died before she had a chance to start it, but I very much doubt it would have been tolerated, considering that the product literature warns you to wash your hands immediately with soap and water, should you touch a broken or crumbled pill. That does not sound like a recipe for success in treating a chemically sensitive patient.In retrospect we wish we had a crystal ball in the1990s before she got painted into such a terrible corner by the MCS, and could have pursued aggressive antibiotic and antiviral therapies before she became too frail to handle the side effects. But really, there was back then to our knowledge (a) few if any doctors into that angle and ( we had every reason to hope she would continue on a stable plateau as she had for years already. The fatal mistake was that she "made peace" with the illness and the illness did not uphold its end of the peace accord.'s love for life kept her going I think for several years beyond what most people would have lasted. She was a fighter. I am honored to have shared her live and love these past 13 years. I could go on for many paragraphs about what she managed to accomplish and the lives she touched in spite of being so ill -- far more than most healthy people, really. She was a very special person, to many, many others, not just me.I'm heading to Michigan for memorial services in a few days, and I haven't yet sorted out how I feel about my involvement with this and related lists I've followed, and with various activist or supportive things I could do for people like . As you can imagine a significant part of me wants to take very long vacation from the struggle, and maybe even pretend it was all a bad dream. Another part wants to give meaning to her death by lending myself to the fight. I guess we'll see which side wins out in the coming weeks and months.Regardless -- thank you all for being a resource, a sounding board and sometimes, just listening, these past months.Best,--Bob Grommes