Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 Lynda . . . We'll keep praying for success! . . . Is the chamber a single person or group chamber.When I was participating in a HBOT study for implant women, a woman whose son was a near drowning accident victim was doing it in the single chamber with her baby in her arms. She said he was making remarkable progress since starting. . . She had to drive from Oklahoma to Fort Worth for treatments - five days a week!I've often wondered how the boy is doing.Hugs,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 Rogene, Single chamber. It is a long drive daily, not being used to it. And, hopefully the weather stays good. Keep those prayers coming. I am going to bed, very tired tonight. I think it is the stress. Lynda At 09:55 PM 11/28/2007, you wrote: >Lynda . . . > >We'll keep praying for success! . . . > >Is the chamber a single person or group chamber. > >When I was participating in a HBOT study for implant women, a woman >whose son was a near drowning accident victim was doing it in the >single chamber with her baby in her arms. She said he was making >remarkable progress since starting. . . She had to drive from >Oklahoma to Fort Worth for treatments - five days a week! > >I've often wondered how the boy is doing. > >Hugs, > >Rogene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Lynda, I'm so sorry you have to deal with this. I'll keep you in my prayers as well. I've heard great things about hyperbarics - a know someone who works in the wound healing center at a local hospital and she said the results are incredible. I hope you can find relief from your pain. Sis > > I am heading for Boulder tomorrow, have to see a doctor who works > with hyperbarics and get a prescription for hyperbarics to try to > stop the RSD in my foot. It takes about 60 treatments, $6000 or > more, don't know where I will get that, but it seems my best hope to > stop this. They start out pretty heavy, sometimes two treatments a > day. I am trying to figure out the money situation. > > So, you all, pray this is what works for me. I sure don't want to be > in the situation my son is in with this horrible condition. His life > is misery. > > Lynda > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Thanks, Sis, I hope so also. I have watched what this did to my son and it was not pretty. Lynda At 04:35 AM 11/29/2007, you wrote: >Lynda, > >I'm so sorry you have to deal with this. I'll keep you in my prayers >as well. I've heard great things about hyperbarics - a know someone >who works in the wound healing center at a local hospital and she said >the results are incredible. I hope you can find relief from your pain. > >Sis > > > > > > I am heading for Boulder tomorrow, have to see a doctor who works > > with hyperbarics and get a prescription for hyperbarics to try to > > stop the RSD in my foot. It takes about 60 treatments, $6000 or > > more, don't know where I will get that, but it seems my best hope to > > stop this. They start out pretty heavy, sometimes two treatments a > > day. I am trying to figure out the money situation. > > > > So, you all, pray this is what works for me. I sure don't want to >be > > in the situation my son is in with this horrible condition. His >life > > is misery. > > > > Lynda > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Lynda, I am pretty sure I will be trying it too in January, I sure hope it is an answer for you. Nan > > > > > > > > I am heading for Boulder tomorrow, have to see a doctor who works > > > > with hyperbarics and get a prescription for hyperbarics to try to > > > > stop the RSD in my foot. It takes about 60 treatments, $6000 or > > > > more, don't know where I will get that, but it seems my best hope > >to > > > > stop this. They start out pretty heavy, sometimes two treatments > >a > > > > day. I am trying to figure out the money situation. > > > > > > > > So, you all, pray this is what works for me. I sure don't want > >to be > > > > in the situation my son is in with this horrible condition. His > >life > > > > is misery. > > > > > > > > Lynda > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Lynda, You be safe! The roads were slick yesterday morning. I will pray for good weather and I hope this stops the RSD! Lynn Re: Re: RSD Rogene,Single chamber. It is a long drive daily, not being used to it. And, hopefully the weather stays good. Keep those prayers coming. I am going to bed, very tired tonight. I think it is the stress.LyndaAt 09:55 PM 11/28/2007, you wrote:>Lynda . . .>>We'll keep praying for success! . . .>>Is the chamber a single person or group chamber.>>When I was participating in a HBOT study for implant women, a woman >whose son was a near drowning accident victim was doing it in the >single chamber with her baby in her arms. She said he was making >remarkable progress since starting. . . She had to drive from >Oklahoma to Fort Worth for treatments - five days a week!>>I've often wondered how the boy is doing.>>Hugs,>>Rogene> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 No slick roads on my trip, saw a little snow. I went all the way down I-25 and took the toll road over to HWY 36, then into Boulder. It was faster. A lot less lights. I need a place to stay in Boulder for 1-2 nights a week so I don't have to go back and forth so much. Any Colorado women close to Boulder out there? Monday my appointment is at 9 A.M. Ouch. Lynda At 06:55 PM 11/29/2007, you wrote: >Lynda, > >You be safe! The roads were slick yesterday >morning. I will pray for good weather and I hope this stops the RSD! > >Lynn > > > Re: Re: RSD > >Rogene, > >Single chamber. It is a long drive daily, not being used to >it. And, hopefully the weather stays good. Keep those prayers >coming. I am going to bed, very tired tonight. I think it is the stress. > >Lynda > >At 09:55 PM 11/28/2007, you wrote: > > >Lynda . . . > > > >We'll keep praying for success! . . . > > > >Is the chamber a single person or group chamber. > > > >When I was participating in a HBOT study for implant women, a woman > >whose son was a near drowning accident victim was doing it in the > >single chamber with her baby in her arms. She said he was making > >remarkable progress since starting. . . She had to drive from > >Oklahoma to Fort Worth for treatments - five days a week! > > > >I've often wondered how the boy is doing. > > > >Hugs, > > > >Rogene > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 That's who I had my HBOT treatments with.... in California. She's a sweetheart. I have not heard from her in ages, but I did hear that she got a second chamber and her husband is operating that one. They must be doing well. I hope this works like a charm for you Lynda! I can't see how it will not. Hugs, Patty > > > > > > > > I am heading for Boulder tomorrow, have to see a doctor who works > > > > with hyperbarics and get a prescription for hyperbarics to try to > > > > stop the RSD in my foot. It takes about 60 treatments, $6000 or > > > > more, don't know where I will get that, but it seems my best hope > >to > > > > stop this. They start out pretty heavy, sometimes two treatments > >a > > > > day. I am trying to figure out the money situation. > > > > > > > > So, you all, pray this is what works for me. I sure don't want > >to be > > > > in the situation my son is in with this horrible condition. His > >life > > > > is misery. > > > > > > > > Lynda > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Patty, is an old friend, I was the one who originally helped her also. She came here for a conference and I took her shopping on the Boulder Mall. She had the west coast branch of the Coalition of Silicone Survivors until she got into hyperbarics. She has dual chambers. I think her husband works there also. They have a medical director. is a sweetheart. Lynda At 07:12 AM 11/30/2007, you wrote: >That's who I had my HBOT treatments with.... in California. >She's a sweetheart. I have not heard from her in ages, but I did >hear that she got a second chamber and her husband is operating that >one. They must be doing well. > >I hope this works like a charm for you Lynda! I can't see how it >will not. >Hugs, >Patty > > > > > > > > > > > > I am heading for Boulder tomorrow, have to see a doctor who >works > > > > > with hyperbarics and get a prescription for hyperbarics to >try to > > > > > stop the RSD in my foot. It takes about 60 treatments, $6000 >or > > > > > more, don't know where I will get that, but it seems my best >hope > > >to > > > > > stop this. They start out pretty heavy, sometimes two >treatments > > >a > > > > > day. I am trying to figure out the money situation. > > > > > > > > > > So, you all, pray this is what works for me. I sure don't want > > >to be > > > > > in the situation my son is in with this horrible condition. >His > > >life > > > > > is misery. > > > > > > > > > > Lynda > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 , What kind of infor are you looking for? If you want email me on my personal. a From: <kukana21@...> Subject: RSD Stimulator Date: Friday, July 11, 2008, 8:12 PM If you are out there and have a Spinal Cord Stimulator for RSD i could sure use some help. I had major back surgery (20 screws, 14 inch scar) and it caused the RSD to also go to my leg. I have had symptoms in my arm for 7 years. It gets scary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 > it can get very scary indeed, there are likely to be all sorts of referred pain and bizarre sensations, dont forget your whole body is a network of nerves and nueral pathways, hang in there, try to laugh at the weirdest things, i have had 5 major spinals ad have a whole shed- load of metalwork like yourself, and i get some very strange symptoms indeed, my girlfriend likes the ost bizarre one " no explanation needed " god luck , karl kent-uk karl xx > If you are out there and have a Spinal Cord Stimulator for RSD i could > sure use some help. I had major back surgery (20 screws, 14 inch > scar) and it caused the RSD to also go to my leg. I have had symptoms > in my arm for 7 years. It gets scary. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 HI, SUSAN! I AM SO SORRY TO HEAR OF YOUR NIGHTMARE. I, TOO, HAVE RSD. I HAVE HAD IT NOW FOR 25 YEARS. IF I CAN BE OF ANY HELP...AND I MEAN ANY HELP, TO YOU, SUSAN, PLEASE DO NOT HESITATE TO ASK FOR IT. SOMETIMES IT JUST HELPS TO TALK TO SOMEONE WHO REALLY UNDERSTANDS WHERE YOU ARE COMING FROM AND WHAT YOU REALLY ARE GOING THROUGH. MIKE, OUR WONDERFUL GROUP OWNER, HAS MADE ME HIS CO-OWNER OF OUR WONDERFUL GROUP. I FEEL PRIVILEDGED TO HAVE MIKES' TRUST AND TO BE ABLE TO HELP OUT MY FELLOW GROUP MEMBERS WHENEVER POSSIBLE. PLEASE CONTACT ME @ _KGAVI@..._ (mailto:KGAVI@...) . I HOPE THAT I CAN HELP YOU WITH WHAT YOU NEED ASSISTANCE WIT. GENTLE HUGS TO ALL, KATHY G. **************Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com! (http://www.tourtracker.com?NCID=aolmus00050000000112) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 YOU CERTAINLY HAVE THE RIGHT ATTITUDE!!!! WE ALL MUST, I REPEAT...MUST, HAVE A GREAT SENSE OF HUMOR...OR WE WILL WIND UP IN THE FUNNY FARM BITING OUR OWN NOSES OFF...(OUCH...JUST THE THOUGHT IS QUITE DISGUSTING AND PAINFUL TO ME...LOL) BUT ON A SERIOUS NOTE...IT SOMETIMES FEELS LIKE RSD OR WHATEVER CHRONIC PAIN SYNDROME AKA....HELL...THAT YOU ARE GOING THROUGH WE ALL NEED EACHOTHER TO LEAN ON AND DEPEND UPON. MAY GOD BLESS YOU AND HELP YOU GET THROUGH YOUR NIGHTMARES. I WISH FOR YOU PAIN FREE OR LESS PAIN AND SLEEP-FILLED NIGHTS. HANG IN! GENTLE HUGS TO ALL, KATHY G. IF ANYONE NEEDS TO DISCUSS RSD...PLEASE EMAIL ME DIRECTLY AT _KGAVI@..._ (mailto:KGAVI@...) . AS YOU PROBABLY HAVE READ ALREADY, I HAVE HAD IT FOR 25 YEARS NOW. MAYBE WE COULD HELP EACHOTHER AND LEARN SOME HINTS OR HELPFUL TID BITS....HANG IN!!!!! **************Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com! (http://www.tourtracker.com?NCID=aolmus00050000000112) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2010 Report Share Posted September 7, 2010 Has anyone had RSD? If so what helped you get past it? http://www.neurologychannel.com/rsd/index.shtml  I jammed my toe in the spring & it hurt like I just did it for days, burned & swelled. I thought it went away but came back. It's gotten so bad I don't know what to do. The skin feels hot. I should say nerve endings over-react & feel like they're stuck. You can still move but they burn & are numb. I considered the ER last night & thought what would they do? It's either on the left, right head to toe. The scariest is when goes to the thoractic area down through the core. I ordered a TEN's nerve stimulator but don't have it yet. Hot bathes or hot water in an ice bag, since they're soft help some. I thought had shingles in July. The weird thing is the dried up crusty things never left, but faded. Wonder if it's from mold or c/b morgellen's. Read you can self test w grape juice switching in your mouth & spitting it out. If there are fibers you have it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2010 Report Share Posted September 7, 2010 Kathy, I have been trying to figure this out myself. I have been diagnosed with that recently after a sprain to foot. I'm beginning to think it is due to too much inflamation in my body, is my guess. I don't have whole body pain though, just foot swelling and pain after sprain that is not going away for very long time. Rife helped but when I stopped treatment came back and too expensive unless I buy machine. Similar problems as Lyme and I heard there was a Lyme/Rife group I may read in. I don't know what connection to Morgellions would be, do you have a skin condition also? Feet are particularly difficult because you keep irritating them by walking on them. I have the same struggle going on. I injured my shoulder swimming and it too a little long to get over but I did completely so I think it's just that feet or any joint you walk on is very very difficult, particularly if you have difficulty already with inflamation as I do, lots of allergies, too. I read on a foot forum a 28 year old that had a person who gave her a pedicure and was rough with her feet/toes and had a gradual onset of pain to point she was crawling around on floor for long period. Good luck and if you come across any good information please share with me. Thanks, Barb > > > Has anyone had RSD? If so what helped you get past it? > > http://www.neurologychannel.com/rsd/index.shtml > >  I jammed my toe in the spring & it hurt like I just did it for days, burned & swelled. I thought it went away but came back. > > It's gotten so bad I don't know what to do. The skin feels hot. I should say nerve endings over-react & feel like they're stuck. You can still move but they burn & are numb. > > I considered the ER last night & thought what would they do? It's either on the left, right head to toe. The scariest is when goes to the thoractic area down through the core. I ordered a TEN's nerve stimulator but don't have it yet. > > Hot bathes or hot water in an ice bag, since they're soft help some. > I thought had shingles in July. The weird thing is the dried up > crusty things never left, but faded. > > Wonder if it's from mold or c/b morgellen's. Read you can self test w grape juice switching in your mouth & spitting it out. If there are fibers you have it. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 I had RSD. It started out as a finger injury and I wound up in therapy for a year and 10 spinal injections. They say it is more intense pain than a regular injury. I remember the pain it was so severe. The doctor said the first three months figureing out it is RSD is important or it can become much worse. I have read people having a toe injury turning into RSD. I had a cousin and his wife had an injury and wound up in a wheelchair. It seems like RSD goes to be a finger, foot or toe, and I have hear of the shoulder. I will have to ask my cousin if his wife was ever able to get out of the wheelchair. Luckily at the time I had the best insurance. But I remember in therapy them rubbing my hand and it was so intense pain. But I knew it was helpful and even after many months asked him to use more pressure cuz he was a little too gentle. They had many different things they made for my finger during the year as I progressed to each stage. They also picked me up and drove me home which was great. Even took me to the hospital and would wait for my to get injections and return for them to work on it after injections. This was after I became ill from my three water damaged buildings. > > My sister had this and if one can have transient RSD, I have. She thought I did because pain was amplified horrendously for me at one point. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Barb, Doc's are figuring it out. I jammed toes moving an old stereo cab. from downstairs to throw out.2 toes swelled & it hurt, felt hot ike I just did it for few days, then numb. The foot part went away, then it started on the left side or the right. Now in the thoractic spine area. I tolerated ice, so maybe not that. After ice numbness eased up some. So, may be bad spasm & pinched nerves. Haven't tried Rifing. Or it's a combo left over shingles. Noticed a dried up blister went away, still 2 old ones there. Was taking L-Lysine. My West. Blot came back neg, could be false. Have to test CD 57. Brought up Shoemakers tests & doc. said insurance won't pay for them. It depends on the doc & what insurance we have, but a file on what mold tests insurance might pay would be good. Would take too much time. Kathy - From: barb b w <barb1283@...>  Re: RSD Kathy, I have been trying to figure this out myself. I have been diagnosed with that recently after a sprain to foot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Robin, I forgot, I'm sorry all your sister went through. A blessing she's healed. I'm praying it's not RSD, & pinched nerves or a combo of left over shingles. Someone from another list said her friend recovered from RSD w a Homeopatic shingles remedy. I'm thinking about it. I'm started a 1/2 dose of a B-complex to help the nerves some. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 I did have Shingles about 3-4 years ago but my dermatologist diagnosed it within 72 and treated it successfully but I have heard of post-herpetic pain. I think it is related to other health issues and not being advised to get off my feet after sprain. I went to hospital and because there was no broken bone ER doc didn't even return (I went to ER bec it was a holiday and doc ofc closed). I so I continued to walk on it and then it started to swell up badly. I've heard sprains are worse than breaks and I should have gotten off my feet for a couple of weeks or limit walking. I think complicated with problem my body has of clearing out inflamation. I haven't given up. I'm trying everything I can to bring down inflamation including recently returning to CSM powder and reexaminng possible undiscovered issues w house...not as causing foot problem but causing trouble w resolving inflamation. > > Barb, > > Doc's are figuring it out. I jammed toes moving an old stereo cab. from downstairs to throw out.2 toes swelled & it hurt, felt hot ike I just did it for few days, then numb. > > The foot part went away, then it started on the left side or the right. Now in the thoractic spine area. I tolerated ice, so maybe not that. After ice numbness eased up some. So, may be bad spasm & pinched nerves. Haven't tried Rifing. > > Or it's a combo left over shingles. Noticed a dried up blister went away, still 2 old ones there. Was taking L-Lysine. > > My West. Blot came back neg, could be false. Have to test CD 57. Brought up > Shoemakers tests & doc. said insurance won't pay for them. > > It depends on the doc & what insurance we have, but a file on what mold tests insurance might pay would be good. Would take too much time. > > Kathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Hi Kathy, She's so fine now, I dont think she is scarred from the experience. She's grateful to be alive and well. Wouldnt that be a nice place to be? ....Its been a rough week. I wouldnt be surprised about homeopathy. I know a few people who are having good results (at least some relief and progress) with classical homeopathy and a few who healed from lyme with homeopathy and photons. Im thinking about both.. got to get out of here first.. one week. Lynne McTaggart says some pretty interesting things about homeopathy and light energy in The Field and The Intention Experiments. DYsregulation of any kind has a signal and when you play that signal back at a " dilution " (forgot the word they used so using the homeopathic word).. you disarm the signal. A bit diff from rife. I know 3 people who are " cured " from lyme using homeopathy with photons. One is teaching pilates classes now. She was bad off, struggled for years. I think the body can get very dysregulated and anything to help it get back on course is a good thing. Its like a domino effect. L theanine can be helpful to calm the body down. My doc says cant really take too much of it. Suntheanine is what he recommended. It interfaces with glutamate in some way and calms brain waves... and I would not be surprised if glutatmate is not involved with RSD. Of course, a virus or the ANS reacting to a threat such as a virus or injury can probaby cause RSD as well.. but I wonder if there is some excess glutamate activity in the process. Holy basil might help as well. I would be careful with that becaus eit can lower cortisol.. unless of course you have high cortisol. I take 2 caps at a time of new chapter HB. It takes burnign pain right out. Dont know what it would do for RSD like pain but it might help because it acts on inflammation and calms the body down. I use Food Science Sun theanine 200 mg a pill and take 2 at a time.. havent experimented with more. I stopped all herbs and such while waiting for my XMRV and MACRoNs test kits to come in.. trying to check for babesia as well. So I am pretty miserable. Robin > > Robin, > > I forgot, I'm sorry all your sister went through. A blessing she's healed. I'm praying it's not RSD, & pinched nerves or a combo of left over shingles. > > Someone from another list said > her friend recovered from RSD w a Homeopatic shingles remedy. I'm thinking about it. > > I'm started a 1/2 dose of a B-complex to help the nerves some. > > Kathy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Robin wrote: L theanine can be helpful to calm the body down. My doc says cant really take too much of it. Suntheanine is what he recommended. It interfaces with glutamate in some way and calms brain waves... and I would not be surprised if glutatmate is not involved with RSD. Of course, a virus or the ANS reacting to a threat such as a virus or injury can probaby cause RSD as well.. but I wonder if there is some excess glutamate activity in the process. Istopped all herbs and such while waiting for my XMRV and MACRoNs test kits to come in.. trying to check for babesia as well. So I am pretty miserable. Robin Robin, Sorry if this is off topic for others. I'm hanging in there for the TENS unit. Can glycine cause more glutamate? I took mag/glycine for a few mos. Read glycine is antispasmatic. Went back to citrate until I figure it out. I quit calicum other than what's in my multi w Yasko's belief. But can't you cause problems if cal isn't balanced w mag for middle aged folks? I'll try the SunTheanine w GABA. I'll consider homeopathic. I had a bad experience w a practitioner who had you take the whole dose in one night. Read you should only take 1 - 2 pellets at a time.  Has anyone been able to have insurance pay for any of these tests? I here it's out of pocket. Kathy Quote Link to comment Share on other sites More sharing options...
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