Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 cortisol tests are completely inaccurate, docs don't treat adrenals correctly. I think kidney pain comes from high TSH. Gracia > > I was really frustrated on my last post after feeling so low after > the Dr's....my tsh came back at 4.9 so at least my meds have been > adjusted...but for about a week my kidneys have been killing me. My > doc is testing my cortisol level just to be safe...my mom suggested > that my blood sugar get checked for diabetes...could this be reason > for kidney pain though? I just want to feel better...as we all do > Anyway...thanks guys > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Thanks Rhonda! Lime disease is from the small deer tick. At some point I was bitten by an infected tick. It causes a rash, then other symptoms. I camped, hiked, and traveled last summer but this summer nothing. Of course my dogs could have brought one in but it's doubtful since I treat my yard for everything. Who can guess! The pneumonia is in my left lung only so I can still breath ok. I can't imagine it in both! I refuse to let anything else drag me down! Peace...SharonCRhonda <rhondahudson@...> wrote: What is Lime disease? I have heard of it but know nothing about it.Boy thank goodness your not feeling well has a tangible reason.I had pneumonia last year and wow. Talk about kick a persons butt. Had it inboth lungs.This makes you one step closer to being well too Sharon-lolI wish for you a speedy recovery!!Rhonda [ ] update...>> Good Day everyone!>> I've been troubled as to why I had so many problems with the medicine andcouldn't work while others could. I still itch terribly and have constantheadaches. I've been having more trouble getting up out of bed again eventhough the treatments are finished. Well, it turns out I have lime disease.I had been tested twice in the past year and they came back negative but mydoctor tested again since the tests have changed and are more accurate. Ialso have pneumonia. Soooo.... I'm off to the drug store for antibiotics andthis should be IT!!! The symptoms of Lime are similar to many symptoms fromthe treatments. I'm smilin' again! I have high hopes I will feel much bettersoon!>> To all who are taking another shot tonight...it's one more closer to theend of treatment! You're doing a good job!! The yucky side effects fromtreatment will go away and your strength will return. Good luck and takecare...>> Peace...SharonC>>>> ---------------------------------> Do you ?> Address AutoComplete - You start. We finish.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 yay sarah! its so great to hear the update - (even the unpleasant symptoms that sometimes go along with this wonderful program). rock on sister! ~ suz Like I've said all along though, the weight loss is just a nice side > effect. I mean, yes, I'd be disappointed if I didn't lose anything 'cause > I can lose (albeit VERY slowly) on just regular Atkins, BUT I feel so much > better eating this way. I really think I'll be making progress, and I'm > excited to feel better. > > in IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Hi , Sounds like you are having healing symptoms as well. I had to take antibiotics a month ago which set me back, so I'm going through healing again. I've gotten headaches, my skin is peeling and I have acne, I have a flare up of my psoriasis, I felt nauseous yesterday and dizzy. The detox kind of sucks but so does being sick right? You aren't alone! Luv, Debby San , CA --- Wittekind <starlite@...> wrote: > Well, I have several things to report. > > Last Friday, I started getting a sore throat. It > didn't hurt INSIDE my > throat, but it felt like swallowing was pressing on > something painful in > my neck. I thought maybe I was getting sick, but by > Sunday morning, the > pain was mostly gone. Website for my son Hunter Hudson, born 10/11/04: http://debbypadilla.0catch.com/hunter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Amy, Congrats on the progress! It can feel very good to finally get somewhere. I spent years dealing with docs that wouldn't take the time to really figure out my health issues, or they simply didn't have the right knowledge. Good for you for being so proactive in helping your husband. He is very fortunate to have a wife like you! Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Thanks for the update, Ken. Did you know that removed ribs grow back? So, how close are you to a decision? Sharon [ ] Update... Hello group! I hope everyone one is doing well (those facing surgery, Camille / Caren.. I pray all goes well)!!!! Those on the other side, THANK YOU for staying here - we all appreciate your support!!! Recent sucess stories ( & so many others) are always great to read... I wanted to give you an update.. After first considering many options over the past 3+ years, including wait, denial, slowly taking more meds, PT, etc... I recently went to see Dr. Pashman at Cedar-Sinai.. I started by checking out his web site www.eSpine.com , his CV, did several internet searches on sites like pubmed - etc, finding other revision patients on-line that had successful surgeries with him.. here's a great story / example..( http://www.reviewjournal.com/lvrj_home/2007/Mar-20-Tue-2007/living/13178989.html ) scrolling back through old messages, I had originally found his name back in 2005. Dr. P's surgical approach would be to completely remove (both) of my Harrington rods, do a "wedge cut" osteotomy around L2/3, decompression of the remaining lumbar discs.. he would not use Xlifs or Tlifs, he feels he can get the correction needed using only a posterior approach.. being diabetic he is concerned about healing post op - so he feels that using my my own bone for fusion would be safest - he proposed removing a rib (since my hip was already used) and will be needed for fusion to the pelvis.. About a year ago, I had sent my info to Dr. LaGrone and this is basically the same approach he suggested (without the removal of a rib as I was not diabetic then). I have also consulted with Dr. Akbarnia.. his surgical approach from 2007 would be much different than Dr. Pashman's - Dr. A proposed leaving in the smaller of my 2 rods as well as the top portion of the long rod for now, but take it out later (as needed).. & no planned osteotomies (reserving the ability to change his mind during surgery), Dr. A would use Xlifs, and do decompression as well as use BMP for fusion. For those who do not know, I was diagnosed with Type 1 diabetes in 9/2007.. I am currently fused T2-L2.. I have also maintained the majority of my weightloss (60 lbs)! My story is in the member section (which I need to update)! Feel free to ask questions.. or chime in with helpful thoughts.. Take care - Ken. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Hi Sharon, Wow, I did not know that ribs grow back! I have a follow up meeting with Dr P this Friday - if all goes well, my surgery date could be May 29th.. or early summer.. My wife and I were very comfortable with Dr. P - his confidence and ability to communicate put us at ease, I knew right away that "he knew how to help me", he explained everything in detail, took his time with us, gave us his email address and brought in a nurse that we could call with follow up questions, etc - although his surgical plan seems like a lot of surgery, the way he explained it made good sense to me/us... we feel lucky to have met him. I will keep you updated as things progress! Ken. [ ] Update... Hello group! I hope everyone one is doing well (those facing surgery, Camille / Caren.. I pray all goes well)!!!! Those on the other side, THANK YOU for staying here - we all appreciate your support!!! Recent sucess stories ( & so many others) are always great to read... I wanted to give you an update.. After first considering many options over the past 3+ years, including wait, denial, slowly taking more meds, PT, etc... I recently went to see Dr. Pashman at Cedar-Sinai. . I started by checking out his web site www.eSpine.com , his CV, did several internet searches on sites like pubmed - etc, finding other revision patients on-line that had successful surgeries with him.. here's a great story / example..( http://www.reviewjo urnal.com/ lvrj_home/ 2007/Mar- 20-Tue-2007/ living/13178989. html ) scrolling back through old messages, I had originally found his name back in 2005. Dr. P's surgical approach would be to completely remove (both) of my Harrington rods, do a "wedge cut" osteotomy around L2/3, decompression of the remaining lumbar discs.. he would not use Xlifs or Tlifs, he feels he can get the correction needed using only a posterior approach.. being diabetic he is concerned about healing post op - so he feels that using my my own bone for fusion would be safest - he proposed removing a rib (since my hip was already used) and will be needed for fusion to the pelvis.. About a year ago, I had sent my info to Dr. LaGrone and this is basically the same approach he suggested (without the removal of a rib as I was not diabetic then). I have also consulted with Dr. Akbarnia.. his surgical approach from 2007 would be much different than Dr. Pashman's - Dr. A proposed leaving in the smaller of my 2 rods as well as the top portion of the long rod for now, but take it out later (as needed).. & no planned osteotomies (reserving the ability to change his mind during surgery), Dr. A would use Xlifs, and do decompression as well as use BMP for fusion. For those who do not know, I was diagnosed with Type 1 diabetes in 9/2007.. I am currently fused T2-L2.. I have also maintained the majority of my weightloss (60 lbs)! My story is in the member section (which I need to update)! Feel free to ask questions.. or chime in with helpful thoughts.. Take care - Ken. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Hi, Ken Yes, I was quite surprised to learn it. If the word on the 'net is correct, they grow back if the periosteum (tissue surrounding the bone) is left intact. I'm sure any scoliosis surgeon knows how to do that, but it never hurts to verify such information with your doc. I'm glad to hear things are coming together for you, and kudos on keeping those pounds off! Sharon [ ] Update... Hello group! I hope everyone one is doing well (those facing surgery, Camille / Caren.. I pray all goes well)!!!! Those on the other side, THANK YOU for staying here - we all appreciate your support!!! Recent sucess stories ( & so many others) are always great to read... I wanted to give you an update.. After first considering many options over the past 3+ years, including wait, denial, slowly taking more meds, PT, etc... I recently went to see Dr. Pashman at Cedar-Sinai. . I started by checking out his web site www.eSpine.com , his CV, did several internet searches on sites like pubmed - etc, finding other revision patients on-line that had successful surgeries with him.. here's a great story / example..( http://www.reviewjo urnal.com/ lvrj_home/ 2007/Mar- 20-Tue-2007/ living/13178989. html ) scrolling back through old messages, I had originally found his name back in 2005. Dr. P's surgical approach would be to completely remove (both) of my Harrington rods, do a "wedge cut" osteotomy around L2/3, decompression of the remaining lumbar discs.. he would not use Xlifs or Tlifs, he feels he can get the correction needed using only a posterior approach.. being diabetic he is concerned about healing post op - so he feels that using my my own bone for fusion would be safest - he proposed removing a rib (since my hip was already used) and will be needed for fusion to the pelvis.. About a year ago, I had sent my info to Dr. LaGrone and this is basically the same approach he suggested (without the removal of a rib as I was not diabetic then). I have also consulted with Dr. Akbarnia.. his surgical approach from 2007 would be much different than Dr. Pashman's - Dr. A proposed leaving in the smaller of my 2 rods as well as the top portion of the long rod for now, but take it out later (as needed).. & no planned osteotomies (reserving the ability to change his mind during surgery), Dr. A would use Xlifs, and do decompression as well as use BMP for fusion. For those who do not know, I was diagnosed with Type 1 diabetes in 9/2007.. I am currently fused T2-L2.. I have also maintained the majority of my weightloss (60 lbs)! My story is in the member section (which I need to update)! Feel free to ask questions.. or chime in with helpful thoughts.. Take care - Ken. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2008 Report Share Posted April 22, 2008 Ken, I'm glad to hear that you have found a surgeon that you are so comfortable with and who took a lot of time with you. And I'm glad that your wife had good feelings about him too. I remember hearing good things about Dr. Pashman when I lived in the Los Angeles area several years ago. I never looked into him in great details, because I wasn't pursuing a flatback diagnosis at that time. It sounds like you have your diabetes under control now. And I'm so happy to hear that you've been able to keep off most of your weight loss. That must have been no small accomplishment for you to get used to a new diabetic lifestyle! And it will likely help your recovery process immensely to have that extra weight off. Good luck with your decision! Do you have good family and friend support available to you? How old are your kids now? > > Hi Sharon, > > Wow, I did not know that ribs grow back! > > I have a follow up meeting with Dr P this Friday - if all goes well, my surgery date could be May 29th.. or early summer.. > > My wife and I were very comfortable with Dr. P - his confidence and ability to communicate put us at ease, I knew right away that " he knew how to help me " , he explained everything in detail, took his time with us, gave us his email address and brought in a nurse that we could call with follow up questions, etc - although his surgical plan seems like a lot of surgery, the way he explained it made good sense to me/us... we feel lucky to have met him. > > I will keep you updated as things progress! > > Ken. > > > > [ ] Update... > > > Hello group! > > I hope everyone one is doing well (those facing surgery, Camille / Caren.. I pray all goes well)!!!! Those on the other side, THANK YOU for staying here - we all appreciate your support!!! Recent sucess stories ( & so many others) are always great to read... > > I wanted to give you an update.. After first considering many options over the past 3+ years, including wait, denial, slowly taking more meds, PT, etc... I recently went to see Dr. Pashman at Cedar- Sinai. . I started by checking out his web site www.eSpine.com , his CV, did several internet searches on sites like pubmed - etc, finding other revision patients on-line that had successful surgeries with him.. here's a great story / example..( http://www.reviewjo urnal.com/ lvrj_home/ 2007/Mar- 20-Tue-2007/ living/13178989. html ) scrolling back through old messages, I had originally found his name back in 2005. > > Dr. P's surgical approach would be to completely remove (both) of my Harrington rods, do a " wedge cut " osteotomy around L2/3, decompression of the remaining lumbar discs.. he would not use Xlifs or Tlifs, he feels he can get the correction needed using only a posterior approach.. being diabetic he is concerned about healing post op - so he feels that using my my own bone for fusion would be safest - he proposed removing a rib (since my hip was already used) and will be needed for fusion to the pelvis.. > > About a year ago, I had sent my info to Dr. LaGrone and this is basically the same approach he suggested (without the removal of a rib as I was not diabetic then). > > I have also consulted with Dr. Akbarnia.. his surgical approach from 2007 would be much different than Dr. Pashman's - Dr. A proposed leaving in the smaller of my 2 rods as well as the top portion of the long rod for now, but take it out later (as needed).. & no planned osteotomies (reserving the ability to change his mind during surgery), Dr. A would use Xlifs, and do decompression as well as use BMP for fusion. > > For those who do not know, I was diagnosed with Type 1 diabetes in 9/2007.. I am currently fused T2-L2.. I have also maintained the majority of my weightloss (60 lbs)! My story is in the member section (which I need to update)! > > Feel free to ask questions.. or chime in with helpful thoughts.. > > Take care - Ken. > > > > > > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > > > ______________________________________________________________________ ______________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2008 Report Share Posted April 22, 2008 Hi ! Yes, I am very fortunate to have lived most of my 40 years near family and friends! I know they will take very good care of me (but most importantly, my wife and kids will have great support).. my kids are 15, 11 & 9.. they have been asking some great questions about the surgery and recovery - as a family, we are trying to focus on the potential benefits (without expecting too much, of course)! For example, I was telling my 9 yo that "post op" I may be able to walk down the block instead of just standing on the porch... etc... As for the diabetes, Yes, I'm doing well with it, I'm 7 months into this lifestyle - my recent A1C was 6.9 and all my other #s were good, so my endo wants me to try the pump - which we are pursuing, but it will not happen until after surgery and initial recovery.. The weight loss did not come easy, at first - it took me over a year to lose 60-65 lbs - but then after stabilizing, I started dropping rapidly and that was from the diabetes (sugar in the urine = loss of calories) so I dropped another almost 40 lbs (which I have regained) and now stabilized again.. which my doc says is normal - but whew!! what a ride!! Hope you are doing well ! Ken. [ ] Update...> > > Hello group!> > I hope everyone one is doing well (those facing surgery, Camille / Caren.. I pray all goes well)!!!! Those on the other side, THANK YOU for staying here - we all appreciate your support!!! Recent sucess stories ( & so many others) are always great to read...> > I wanted to give you an update.. After first considering many options over the past 3+ years, including wait, denial, slowly taking more meds, PT, etc... I recently went to see Dr. Pashman at Cedar-Sinai. . I started by checking out his web site www.eSpine.com , his CV, did several internet searches on sites like pubmed - etc, finding other revision patients on-line that had successful surgeries with him.. here's a great story / example..( http://www.reviewjo urnal.com/ lvrj_home/ 2007/Mar- 20-Tue-2007/ living/13178989. html ) scrolling back through old messages, I had originally found his name back in 2005.> > Dr. P's surgical approach would be to completely remove (both) of my Harrington rods, do a "wedge cut" osteotomy around L2/3, decompression of the remaining lumbar discs.. he would not use Xlifs or Tlifs, he feels he can get the correction needed using only a posterior approach.. being diabetic he is concerned about healing post op - so he feels that using my my own bone for fusion would be safest - he proposed removing a rib (since my hip was already used) and will be needed for fusion to the pelvis.. > > About a year ago, I had sent my info to Dr. LaGrone and this is basically the same approach he suggested (without the removal of a rib as I was not diabetic then).> > I have also consulted with Dr. Akbarnia.. his surgical approach from 2007 would be much different than Dr. Pashman's - Dr. A proposed leaving in the smaller of my 2 rods as well as the top portion of the long rod for now, but take it out later (as needed).. & no planned osteotomies (reserving the ability to change his mind during surgery), Dr. A would use Xlifs, and do decompression as well as use BMP for fusion.> > For those who do not know, I was diagnosed with Type 1 diabetes in 9/2007.. I am currently fused T2-L2.. I have also maintained the majority of my weightloss (60 lbs)! My story is in the member section (which I need to update)! > > Feel free to ask questions.. or chime in with helpful thoughts..> > Take care - Ken. > > > > > > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > > > ____________ _________ _________ _________ _________ _________ _____________ __> Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ> Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 Elaina, Thanks for your update, though I will look forward to one in which you say you are well. I, like you, love horses. I have been devastated that I can not ride like I used to. In fact, for now, all I can do is walk to the fence where my horse greets me and gives me kisses. But, he knows I am ill and he looks forward to the day when we can ride again. As do I! I took oral antibiotics for about 5 months. I got MUCH worse. Then I switched doctors and got on IV antibiotics. By the time I switched, I LITERALLY was afraid to go to sleep at night because I was afraid I might not wake. Now, 6 months into IV, I am feeling much better. I am almost to where I was when I started treatment. I am also using rife, ozone sauna, epsom salt baths, supplementation, meditation, etc. I am *trying* to incorporate coffee enemas as I hear they are incredibly helpful. Everyones answer is a little different. It takes a while to find what works for you. The absolute most important thing IMHO, is to have a positive attitude. And, my dear, you do. It is wonderful that you are thankful for what experiencing this wretched disease has brought about in your life. And who it has helped you become. You will beat this disease because you are strong. ~Mimi My blog: www.iammimi.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 Thanks for your concern. I enjoyed looking over your blog breifly. I have my own Lyme disease blog you can look at: www.elainaslymediseasestory.blogspot.com I am still moving forward although I am still suffering. The horses are all i have too really but they are over 20 minutes away to get to the mini barn for comfort and over 1 hr. away for riding... so it is hard but i got to each 1 per weekend and train the baby mini i chose to free lease (rent it for no cost really) and I take my therapuetic lesson time on saturday with the other barn. Both are very helpful though for the emotional standards of this condition! Elaina From: Mimi <mimi@...> Subject: [ ] Re:Update... Date: Wednesday, March 18, 2009, 10:41 AM Elaina, Thanks for your update, though I will look forward to one in which you say you are well. I, like you, love horses. I have been devastated that I can not ride like I used to. In fact, for now, all I can do is walk to the fence where my horse greets me and gives me kisses. But, he knows I am ill and he looks forward to the day when we can ride again. As do I! I took oral antibiotics for about 5 months. I got MUCH worse. Then I switched doctors and got on IV antibiotics. By the time I switched, I LITERALLY was afraid to go to sleep at night because I was afraid I might not wake. Now, 6 months into IV, I am feeling much better. I am almost to where I was when I started treatment. I am also using rife, ozone sauna, epsom salt baths, supplementation, meditation, etc. I am *trying* to incorporate coffee enemas as I hear they are incredibly helpful. Everyones answer is a little different. It takes a while to find what works for you. The absolute most important thing IMHO, is to have a positive attitude. And, my dear, you do. It is wonderful that you are thankful for what experiencing this wretched disease has brought about in your life. And who it has helped you become. You will beat this disease because you are strong. ~Mimi My blog: www.iammimi. com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Hi, Elaina! Thanks for your update. Loved your blog page. My 22 yr old son was just discovered to have sleep apnea. He is just starting the process. And I have a friend who also has it. She has not used the CPAP but just supplemental oxygen at night. Just doing that has her waking up more rested. She says it doesn't take her brain hours to wake up any more. I will be praying that you adjust quickly to the CPAP and that it is very helpful to you! BTW, we saw St. at an Inside Out Festival about 8 years ago. (The festival is not called that anymore). She was great! Good choice in music. =) Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Thanks . I love St. , she comes to Soulfest at Gunstock NH every August and I love to see her and get her signature! I do a Purity Devotional by her and listen to he rnewest CD everynight to get to sleep...yup, I like her! The C pap isn't here yet, my mom just finished fighting the insurance company if you saw after i updated the blog last night. I am told its difficult to get used to but will do my best when its here and hope for those exact results. I take lots of sleeping aids (heerbals) and do lavander, and soft music, and stuff to help, I don't think it really does, every day is the same, I wake up taking hours to ungrogginize as I call it, and then i feel as if i could sleep the whole day and never wake up. But I push through school work and Pilates for exercise and stretching... Its more of a yoga with out pagan bases.... and take my almost 40 pills daily! thanks for responding, I appreciate the feedback in knowing I am not alone as a Teen in this Lyme world! Elaina,NH Elaina From: kgg12003 <kggenest@...> Subject: [ ] Re: Update... Date: Friday, March 20, 2009, 8:35 AM Hi, Elaina! Thanks for your update. Loved your blog page. My 22 yr old son was just discovered to have sleep apnea. He is just starting the process. And I have a friend who also has it. She has not used the CPAP but just supplemental oxygen at night. Just doing that has her waking up more rested. She says it doesn't take her brain hours to wake up any more. I will be praying that you adjust quickly to the CPAP and that it is very helpful to you! BTW, we saw St. at an Inside Out Festival about 8 years ago. (The festival is not called that anymore). She was great! Good choice in music. =) Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Hello I just had to comment on this. I read somewhere that the test for sleep apnea needs to be done at a Sleep Study Center in Big Cities like Boston or It can be be missed. I had my test at a regular hospital that had a sleep study room in it. I was diagnosed with restless leg syndrom. I was woundering if anyone knows if it matters where you have a sleep study. I still wake up gasping for beath at night, and my chest hurts. It is also something that doesn't happen every night. But why would I wake up so suddenly actually feeling like I haven't had air and sucking in as much air as I can if I don't have this. I also feel like I am not breathing good when I wake up like my asthma is acting up. Not weezing but labored breathing. > > Hi, Elaina! > > Thanks for your update. Loved your blog page. My 22 yr old son was > just discovered to have sleep apnea. He is just starting the process. > > And I have a friend who also has it. She has not used the CPAP but just > supplemental oxygen at night. Just doing that has her waking up more > rested. She says it doesn't take her brain hours to wake up any more. > I will be praying that you adjust quickly to the CPAP and that it is > very helpful to you! > > BTW, we saw St. at an Inside Out Festival about 8 years > ago. (The festival is not called that anymore). She was great! Good > choice in music. =) > > Best, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 I had very similar feelings before Sleep apnea diagnosis, and yes I do believe you need to see a good hospital, because the amount of tech. they use and the quality of study is very important. I got mine done at Dartmouth Hitchkock in Hanover NH, second from Boston in our area.... It was beneficial! > > Hello I just had to comment on this. I read somewhere that the test for sleep apnea needs to be done at a Sleep Study Center in Big Cities like Boston or It can be be missed. I had my test at a regular hospital that had a sleep study room in it. I was diagnosed with restless leg syndrom. I was woundering if anyone knows if it matters where you have a sleep study. > > I still wake up gasping for beath at night, and my chest hurts. It is also something that doesn't happen every night. But why would I wake up so suddenly actually feeling like I haven't had air and sucking in as much air as I can if I don't have this. I also feel like I am not breathing good when I wake up like my asthma is acting up. Not weezing but labored breathing. > > > > > > Hi, Elaina! > > > > Thanks for your update. Loved your blog page. My 22 yr old son was > > just discovered to have sleep apnea. He is just starting the process. > > > > And I have a friend who also has it. She has not used the CPAP but just > > supplemental oxygen at night. Just doing that has her waking up more > > rested. She says it doesn't take her brain hours to wake up any more. > > I will be praying that you adjust quickly to the CPAP and that it is > > very helpful to you! > > > > BTW, we saw St. at an Inside Out Festival about 8 years > > ago. (The festival is not called that anymore). She was great! Good > > choice in music. =) > > > > Best, > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Our small town hospital was able to do a sleep apnea test for my wife. It came back positive and she now using a CPAP machine and is doing much better! > [ ] Re: Update... > > > > Hello I just had to comment on this. I read somewhere that > the test for sleep apnea needs to be done at a Sleep Study > Center in Big Cities like Boston or It can be be missed. I > had my test at a regular hospital that had a sleep study room > in it. I was diagnosed with restless leg syndrom. I was > woundering if anyone knows if it matters where you have a > sleep study. > > I still wake up gasping for beath at night, and my chest > hurts. It is also something that doesn't happen every night. > But why would I wake up so suddenly actually feeling like I > haven't had air and sucking in as much air as I can if I > don't have this. I also feel like I am not breathing good > when I wake up like my asthma is acting up. Not weezing but > labored breathing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 The sucking feeling is what a lot of us (including my LLMD) refer to as " air hunger. " It's not like asthma; you can breathe, but it's just a LOT of work. When I hit absolute bottom in a Lyme-induced crash, this is very worst part of it. I just lie on my bed, struggling like a beached fish to keep breathing. I've always wondered if it wasn't liked to cardiac Lyme. I've found relief from the same albuterol inhalers that asthmatics use. Albuterol will open the airways no matter what your issue is (my dad used it while he was dying from lung cancer). I only use the thing very occasionally now, but when that air hunger thing happens, it's fast and easy relief. But there's also the fact that Lyme causes apnea. It loves the collagen in the brain, which is a problem since the brain is mostly collagen. It loves the hippocampus (which is where the sleep centers are) and the meninges most of all. Bad sleep is a well-known side effect of Lyme as a result -- but it's also one of the side effects that we can really do something about. And we should, because the side effects of bad sleep cascade into every organ system of the body. Get this one issue under control, and it's stunning how many of our other symptoms can clear up on their own. This month is my 10-year anniversary of sleeping with a CPAP. I very quickly got to where I literally could not go to sleep without it. Still can't. The most striking thing about it was that my FM cleared up about 80% within three months' time -- which, according to my doctor (one of the pioneers in the field) happens to about 60% of the FM patients he treats. Since a lot of Lymies have FM, that's useful. Back in the day, there were only a few places in the whole country that could do a full sleep workup. (IIRC, the two groundbreaking clinics in the field were at Stanford -- which did mine -- and NYU.) That's changed significantly over the past 15 years, mostly because those two clinics were very aggressive about training up sleep specialists. Now, most cities over half a million will have a hospital with a sleep center that can do a competent job diagnosing most garden- variety sleep disorders. Elaina, If I were you, I'd report your waking-up-breathless thing to the same doctor who ordered your original study. It sounds like something didn't get caught the first time around, and this needs to be revisited. Because what you're describing surely does sound exactly like apnea -- and you will feel SO much better if you can get it addressed. Sara On Mar 20, 2009, at 4:49 PM, Elaina wrote: > I had very similar feelings before Sleep apnea diagnosis, and yes I > do believe you need to see a good hospital, because the amount of > tech. they use and the quality of study is very important. I got > mine done at Dartmouth Hitchkock in Hanover NH, second from Boston > in our area.... It was beneficial! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 that makes me feel better, i just recieved it today so that is like encouragement for tongiht! Elaina From: <msadams@...> Subject: RE: [ ] Update... Date: Saturday, March 21, 2009, 10:28 AM Our small town hospital was able to do a sleep apnea test for my wife. It came back positive and she now using a CPAP machine and is doing much better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 I can certainly understand where you are coming from. My daughter is 9 and is exactly the same. She gets a “yellow” for talking often at school and is always upset that the other kids never get in trouble. She doesn’t understand it is because she is talking so much louder than the rest of them. The TV, radio, MP3 player, etc are always at high volumes. I always tell her if I can hear the words of the song she is listening to with her ear phones in that it is much too loud. She also has the awful habit of saying “What?” even if she hears me speak because she is so used to saying it when she doesn’t hear something. She has not had surgery yet, in fact, we are still awaiting our first appointment with our specialists. So, I wonder how she will be after. I just thought I would say how similar they are. From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of diane_s31 Sent: Tuesday, March 31, 2009 9:22 AM cholesteatoma Subject: Update... Hey all.. just thought I would update you on my 7 yr old sons (Wyatt)status. He is now 5 weeks post op--and doing really well. He's been cleared to blow his nose :-) and his new ear drum graft looks good and healthy. At the end of April they will retest his hearing and we'll discuss plans for his 'second look' surgery in the early fall. I am so relieved that the graft took, after the nasty infection he had at Week 2... I was worried it hadn't. The only concern now is that he really dosen't feel like he hears any better. I have had TWO conversations with his teacher because he tells me they are constantly telling him to 'quiet down' I went in to confirm that he was not being rowdy-- he is 7, after all- and no, he's just really loud! Also.. it's a constant battle over the TV volume! So-- maybe the damage has been done and he's just not going to get any of his loss back? Well, I can deal with that-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Make sure you have your daughter's attention before you speak. Face her and give her a moment to focus. I'll bet the " What? " 's will subside a bit. I have the same problem - people speak to me and expect me to hear every word. I often don't realize they're addressing me until they're already half way through a sentence. It's not surprising to me at all that she needs you to repeat yourself. For some guidance, please see: http://www.lhh.org/about_hearing_loss/living_with_hearing_loss.pdf It might begin to help if both you and your child's teachers look the pamphlet over. It will also help you daughter function a bit better, but you may need to explain things to her - literature like this is usually written at about the 8th grade level. Matt Kari K. Horton wrote: > > I can certainly understand where you are coming from. My daughter is 9 > and is exactly the same. She gets a “yellow” for talking often at > school and is always upset that the other kids never get in trouble. > She doesn’t understand it is because she is talking so much louder > than the rest of them. The TV, radio, MP3 player, etc are always at > high volumes. I always tell her if I can hear the words of the song > she is listening to with her ear phones in that it is much too loud. > She also has the awful habit of saying “What?” even if she hears me > speak because she is so used to saying it when she doesn’t hear something. > > She has not had surgery yet, in fact, we are still awaiting our first > appointment with our specialists. So, I wonder how she will be after. > I just thought I would say how similar they are. > > *From:* cholesteatoma > [mailto:cholesteatoma ] *On Behalf Of *diane_s31 > *Sent:* Tuesday, March 31, 2009 9:22 AM > *To:* cholesteatoma > *Subject:* Update... > > Hey all.. just thought I would update you on my 7 yr old sons > (Wyatt)status. > > He is now 5 weeks post op--and doing really well. He's been cleared to > blow his nose :-) and his new ear drum graft looks good and healthy. > At the end of April they will retest his hearing and we'll discuss > plans for his 'second look' surgery in the early fall. I am so > relieved that the graft took, after the nasty infection he had at Week > 2... I was worried it hadn't. > > The only concern now is that he really dosen't feel like he hears any > better. I have had TWO conversations with his teacher because he tells > me they are constantly telling him to 'quiet down' I went in to > confirm that he was not being rowdy-- he is 7, after all- and no, he's > just really loud! Also.. it's a constant battle over the TV volume! > > So-- maybe the damage has been done and he's just not going to get any > of his loss back? Well, I can deal with that-- > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Glad to hear that his recovering is going so well now that the infection has been taken care of. Good Luck!! chin up JO From: diane_s31 <diane_s31@...>Subject: Update...cholesteatoma Date: Tuesday, March 31, 2009, 8:21 AM Hey all.. just thought I would update you on my 7 yr old sons (Wyatt)status.He is now 5 weeks post op--and doing really well. He's been cleared to blow his nose :-) and his new ear drum graft looks good and healthy. At the end of April they will retest his hearing and we'll discuss plans for his 'second look' surgery in the early fall. I am so relieved that the graft took, after the nasty infection he had at Week 2... I was worried it hadn't. The only concern now is that he really dosen't feel like he hears any better. I have had TWO conversations with his teacher because he tells me they are constantly telling him to 'quiet down' I went in to confirm that he was not being rowdy-- he is 7, after all- and no, he's just really loud! Also.. it's a constant battle over the TV volume! So-- maybe the damage has been done and he's just not going to get any of his loss back? Well, I can deal with that-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Diane, Did your son have a prosthesis placed in this surgery? If not, hearing often does go down as the ctoma was conducting the sound waves. That was Chloe's case. When she finally got the prosthesis a year later, it was still a couple of months before we saw good results--which ended up with near normal hearing. Unfortunately, due to recurrence, she no longer has that prosthesis, but is doing very well with a hearing aid. Before the aid, she did say " what " all the time. That was the first thing we noticed when she got it, and now when she takes it out at night, she immediately starts with the " Whats " again! Good luck! On 3/31/09, cari mcgowan <carimcgow@...> wrote: Matt, I loved the hard of hearing information I gained from your link. My son (3 years old) and myself both have problem hearing. My son has fluid behind his eardrum is waiting to get tubes put in so he can start fully speaking properly. I also had a cholestoma removed in May 2008 and since have only 70% of my hearing Thanks, Cari McGowan On Tue, Mar 31, 2009 at 11:07 AM, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 its not my son...its me who gets themI have had 3 different surgeries....each time there was cholesteatoma... From: s <thequeen.christine@...>cholesteatoma Sent: Wednesday, April 1, 2009 9:39:56 AMSubject: Re: Update... Diane, Did your son have a prosthesis placed in this surgery? If not, hearing often does go down as the ctoma was conducting the sound waves. That was Chloe's case. When she finally got the prosthesis a year later, it was still a couple of months before we saw good results--which ended up with near normal hearing. Unfortunately, due to recurrence, she no longer has that prosthesis, but is doing very well with a hearing aid. Before the aid, she did say "what" all the time. That was the first thing we noticed when she got it, and now when she takes it out at night, she immediately starts with the "Whats" again! Good luck! On 3/31/09, cari mcgowan <carimcgowgmail (DOT) com> wrote: Matt, I loved the hard of hearing information I gained from your link. My son (3 years old) and myself both have problem hearing. My son has fluid behind his eardrum is waiting to get tubes put in so he can start fully speaking properly. I also had a cholestoma removed in May 2008 and since have only 70% of my hearing Thanks, Cari McGowan On Tue, Mar 31, 2009 at 11:07 AM, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2009 Report Share Posted April 14, 2009 Hi Carolyn, I went through Dr. Sullivan and Skip’s for my LDN for my ulcerative colitis and I live in Michigan. It has been a wonderful experience and I like Dr. Sullivan’s “can do” attitude and his nurse staff/receptionist are just wonderful. I’ve talk to Skip, Raphael, Laurie and other staff members (see how many times I’ve called) and they are great as well. Like his tape plays “no question is ever to dumb” so I think you’ll be pleased with your encounters with both. Here’s to your success! From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of sundaycarolyn Sent: Tuesday, April 14, 2009 4:10 PM low dose naltrexone Subject: [low dose naltrexone] update... Well, after delivering my LDN information to both my GP and my fibromyalgia doctor, neither will prescribe it. I tried all the doctors on the OHio list, and none of them are in my insurance health care network. The one last on my list was a local doctor who does prescibe LDN but will not see me because " I only have transverse myelitis " and not MS. (I hate that they said " only " like what the heck did I spend that year in the wheel chair and the last 8 years with nerve attacks for?) So I guess I was just hoping to get one of my doctors on board with my treatment protocol. Guess I was wrong. So I went ahead and called Dr Sullivan and we are going to set up a phone consult. My compounding pharmacy has been providing LDN for years. I just got off the phone with the pharmacist and he assured me that they only use lactose or avicel as the filler, and that they receive their naltrexone in its raw powder form. He seemed to be extremely knowledgable about LDN, he was already familar with the Bihari Protocol. Sounds like a winner, doesn't it? Hopefully once I get the new patient info to fill out and sent back to Dr Sullivan, I will be able to quickly schedule my phone consult with him, and thank God I have my good old compounding pharmacy already on board and knowledgable about this. SOunds like we can get the ball rolling rather quickly here! Carolyn Quote Link to comment Share on other sites More sharing options...
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