Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 a, Thanks for the thoughts and ideas. My wife takes Recuperation. Hasn't helped the tendons in her case but has been marginally helpful for some of the neurological symptoms. Interestingly a different electrolyte formula with a different balance of components (in particular, considerable phosphorus) was quite bad for her. As for the balancing trick, thanks, but there's no balance to work with. She can't stand up on both feet with her eyes closed for more than about 5 seconds without falling over. That however is pretty typical of CFIDS patients. Deep brain injuries impacting balance develop fairly early. Regarding books ... the quality of paper on which they are printed has steadily declined over the years. They seem to go "musty" more rapidly than they used to. At first we though it was just cross-contamination from books we brought with us from the damper climate of Michigan years ago, but after eliminating those we've become convinced that any book more than a couple of years old just sops up even the modest ambient moisture, and in time, gets questionable. The ones that smell "pulpy" even when new are the worst. In addition, they cross-contaminate easily with perfumes and other ambient VOCs, so due to the MCS we have learned to avoid books that have sat in warehouses and bookstores for years. If the copyright is prior to about 2002 it is unlikely to be something she wants to open and sit with. Lastly, many inks are problematic for MCS. After awhile it's hard to tell if you're dealing with mold, toxic inks or coatings, cottonseed oil, binding glues, or what ... who cares, it's just not worth the trouble. We are both avid readers but have cut down our "population" of books 75% or better. There are very few books I'd read more than once, at least not frequently enough that I couldn't just buy another copy if I ever wanted to re-read. And thanks to e-books, there are more and more titles I can read electronically. We now regularly resell paper books we're done with on Amazon. It's easy and generally you get a significant percentage of the original cost recovered. And some lucky soul who doesn't have MCS concerns can enjoy the savings of a used book. Best, --Bob pjeanneus wrote: Hey Bob, I took Levaquin and Avalox over 3 years ago and had knee tendon problems ever since. However, this past year I started two things that have helped. One is Recuperation which I buy from Spain. I have no idea why it has finally helped my tendons. The other is that I got balance therapy for a separate problem. The balance therapy just happened to help my tendons in my knees. I think I know why. It was exercise that involved doing nothing but standing still on one foot or doing a tandem stance with my eyes closed for 3 hours a week. The standing still didn't strain the tendon but enabled it to finally rebuild. This may help your wife, but start for short times frames. She can eventually balance on a foam rubber pad which makes it harder. No, it doesn't sound like you have a mold problem in your house. I also live in the desert - Las Vegas - but I am thinking now that I need to get some of the books out of my house. Keep us posted on how things go for you. a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 a, Pools = chlorine for the most part. Certainly that's true of our community pool. She does do Epsom salt foot baths though. Maybe someday she will be able to get in and out of the tub again. We have a whole-house water filter that does a fair job of getting chlorine and other crud out of the tap water, plus a final KDF filter on the bath. Thanks to the BH4 she is starting to hobble a little further past the mailbox each day now. That will probably help too. Glad you found the book info useful. Best, --Bob pjeanneus wrote: Bob, Can she get in a warm swimming pool? Is there one available? That would be my only other thought of safe gradual rebuilding of the tendons. I HATE QUINOLONES. Your report on the books seems to fit my house. I have my theology text books that are 30 years old, and they do not seem to bother me. But all the newer stuff, especially books checked out of the library seem to be awful. I have cleared all the books and magazines out of our bedroom area. a C. > > a, > > Thanks for the thoughts and ideas. > > My wife takes Recuperation. Hasn't helped the tendons in her case but > has been marginally helpful for some of the neurological symptoms. > Interestingly a different electrolyte formula with a different balance > of components (in particular, considerable phosphorus) was quite bad for > her. > > As for the balancing trick, thanks, but there's no balance to work > with. She can't stand up on both feet with her eyes closed for more > than about 5 seconds without falling over. That however is pretty > typical of CFIDS patients. Deep brain injuries impacting balance > develop fairly early. > > Regarding books ... the quality of paper on which they are printed has > steadily declined over the years. They seem to go "musty" more rapidly > than they used to. At first we though it was just cross- contamination > from books we brought with us from the damper climate of Michigan years > ago, but after eliminating those we've become convinced that any book > more than a couple of years old just sops up even the modest ambient > moisture, and in time, gets questionable. The ones that smell "pulpy" > even when new are the worst. In addition, they cross-contaminate easily > with perfumes and other ambient VOCs, so due to the MCS we have learned > to avoid books that have sat in warehouses and bookstores for years. If > the copyright is prior to about 2002 it is unlikely to be something she > wants to open and sit with. Lastly, many inks are problematic for MCS. > > After awhile it's hard to tell if you're dealing with mold, toxic inks > or coatings, cottonseed oil, binding glues, or what ... who cares, it's > just not worth the trouble. > > We are both avid readers but have cut down our "population" of books 75% > or better. There are very few books I'd read more than once, at least > not frequently enough that I couldn't just buy another copy if I ever > wanted to re-read. And thanks to e-books, there are more and more > titles I can read electronically. We now regularly resell paper books > we're done with on Amazon. It's easy and generally you get a > significant percentage of the original cost recovered. And some lucky > soul who doesn't have MCS concerns can enjoy the savings of a used book. > > Best, > > --Bob > > pjeanneus wrote: > > > > Hey Bob, > > I took Levaquin and Avalox over 3 years ago and had knee tendon > > problems ever since. However, this past year I started two things > > that have helped. One is Recuperation which I buy from Spain. I have > > no idea why it has finally helped my tendons. > > > > The other is that I got balance therapy for a separate problem. The > > balance therapy just happened to help my tendons in my knees. I think > > I know why. It was exercise that involved doing nothing but standing > > still on one foot or doing a tandem stance with my eyes closed for 3 > > hours a week. The standing still didn't strain the tendon but enabled > > it to finally rebuild. This may help your wife, but start for short > > times frames. She can eventually balance on a foam rubber pad which > > makes it harder. > > > > No, it doesn't sound like you have a mold problem in your house. I > > also live in the desert - Las Vegas - but I am thinking now that I > > need to get some of the books out of my house. > > > > Keep us posted on how things go for you. > > > > a Carnes > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 For your sake I hope *you're* not ever reduced to foot baths. Unfortunately that may be the only way you would ever be moved to acknowledge something outside your personal experience could have any conceivable legitimacy. In your world (and the mental landscape of far, far too many in this world) only what happens to you and only the way you respond to things matters. Nothing else can possibly exist. It's no different than "tickwit" doctors for whom, if it doesn't show up on a test in some expected manner, infection doesn't exist. Patient experience? Nothing but unlearned ramblings. I thought maybe for all your take-no-prisoners bluster, you might have been above that. I'm disappointed in you. We don't need a head scan to tell us what we already know. We don't need to be sold on abx. You're preaching to the choir. Our problem isn't a desire to piddle with foot baths, it's THE. INABILITY. TO. D E T O X. Many abx (and many other useful drugs) follow the P-450 detox pathway, which in my wife, happens to be broken and ineffectual. The result of ignoring this fact and administering such drugs anyway, is something akin to inducing porphyria. You have to fix the pathway and/or reduce the toxic burden before you can proceed. If you don't, you risk toxic shock and possibly death. Actually that would be the *merciful* outcome. Tony, you know a lot of facts about infections and abx and tests and pathogen burdens. Whether you've clearly integrated those facts into something coherent, sometimes I wonder. But I credit you for being knowledgeable. However you don't know jack shit about MCS and detox pathways and should not open your mouth about things you know nothing about. --Bob dumbaussie2000 wrote: Bob I know PAula means well but you really want to get some serious scans of your wifes head and with a bit of luck you may be able to observe the massive infection that makes her life so miserable.You really need something concrete to actually focus on in her condition, as opposed to focusing on pool sessions, or foot baths. I think the effort to understand the brain-spine-sinus-thyroid inflammation angel may be the only sensible approach..THIS as opposed to the opposite view of going to a seminar with a bunch of doo gooder fuckwits that don't have the slightest idea what this ilness really is and listening to a whole lot of crap..Even a needs a slap on the wrist in these issues because she is so tickwitted that she wrote a book and suffers something that doesn't fit her strongest beliefs. tony > > > > > > > > Hey Bob, > > > > I took Levaquin and Avalox over 3 years ago and had knee tendon > > > > problems ever since. However, this past year I started two things > > > > that have helped. One is Recuperation which I buy from Spain. I > > have > > > > no idea why it has finally helped my tendons. > > > > > > > > The other is that I got balance therapy for a separate problem. > > The > > > > balance therapy just happened to help my tendons in my knees. I > > think > > > > I know why. It was exercise that involved doing nothing but > > standing > > > > still on one foot or doing a tandem stance with my eyes closed > > for 3 > > > > hours a week. The standing still didn't strain the tendon but > > enabled > > > > it to finally rebuild. This may help your wife, but start for > > short > > > > times frames. She can eventually balance on a foam rubber pad > > which > > > > makes it harder. > > > > > > > > No, it doesn't sound like you have a mold problem in your house. I > > > > also live in the desert - Las Vegas - but I am thinking now that I > > > > need to get some of the books out of my house. > > > > > > > > Keep us posted on how things go for you. > > > > > > > > a Carnes > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 Tony, I don't understand the question. If you're asking if her mold sensitivity became evident after Cipro, no ... it was the other way around. Neither we, nor my wife's doctor, need to be convinced she needs abx. What we are looking for are ways to take abx without killing her with the resulting die-off. Ideas to help detox will be most welcome. Best, --Bob dumbaussie2000 wrote: The mold avoidance group supercharged?Did this occur after her cipro experience...That drug will change your bugs around and once they develop cipro resistance they get extra jumpy.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 No, yes and no. Actually she has soaking sweats and/or hot flashes more or less hourly all by herself and so does plenty of sweating. That's about the only detox mechanism that works. Her own clothes become toxic to her after a time because of this. Until we figured that out her clothes closet was actually getting to be a place she couldn't go. Then we ditched the older stuff and it was fine. Our washer just wasn't able to completely remove the toxic byproducts of her own sweat and over time it builds up in the fabric. Problem is, it's not easy to buy new clothes if you're chemically sensitive, either. But that's a whole other story. Let's just say she gets really tired of un-dyed hemp shirts! Barb Peck wrote: Bob- is your wife over weight? Can she at least tolerate a sauna (to sweat?) Can she get around at all Quote Link to comment Share on other sites More sharing options...
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