Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 Talked to his office this morning. His phone # is 818 344-6111. I have an appointment to see him in early August for treatment of my fibro. Will write back and let all know how it goes. Penny J Re: fibromyalgia > Not sure, but do know he treats CFS. Does anyone have his ph number? > > > Tina, > > Does Dr. Galpin treat fibromyalgia or only CFS? > > > > > Tina M. Hendrix > Cure2000@... > Vice-President, California Coalition > Neuro-Immune Dysfunction Syndromes > Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, > etc. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2002 Report Share Posted May 17, 2002 Way to go Penny J!!!!! thanks! Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 I don't know about Dr G's.... BUT I was bedridden for years..... fresh food carefully prepared, forget the white stuff.....sugar, flour, potatoes and rice. Forget the animal fats.... they increase the pain. SAM-e, magnesium and some herbal tonics have gone a long way to helping me reach the point of recovery where I have regained enough cognitive function to write this. The many drugs did little or caused only more problems. There truly is hope mjh In a message dated 6/4/02 2:12:41 PM Eastern Daylight Time, pappadia@... writes: > Does anyone know if Dr. Goldberg's protocol helps with this? How about > any special diets that help? > I have a friend who was diagnosed with this and is having a hard time > finding information about how diet plays a role. > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 , i have CFS which is a close cousin of FM. (I had some FM syptoms before Dr. g's protocol) and it has been successful in providing relief for me. have her read the ZONE and read Dr. g's article on diet on his website. she can also contact me for a more indepth explanation. > Does anyone know if Dr. Goldberg's protocol helps with this? How about > any special diets that help? > I have a friend who was diagnosed with this and is having a hard time > finding information about how diet plays a role. > Thanks! > > > Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 What's a GFCF diet? In a message dated 6/5/02 7:19:40 AM Eastern Daylight Time, dmccreary@... writes: > Hi , > A good friend of mine has FM and she has noticed a huge difference being on > a GFCF diet. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Hi , A good friend of mine has FM and she has noticed a huge difference being on a GFCF diet. Re: Fibromyalgia > , > i have CFS which is a close cousin of FM. (I had some FM syptoms before Dr. > g's protocol) and it has been successful in providing relief for me. have > her read the ZONE and read Dr. g's article on diet on his website. she can > also contact me for a more indepth explanation. > > Does anyone know if Dr. Goldberg's protocol helps with this? How about > > any special diets that help? > > I have a friend who was diagnosed with this and is having a hard time > > finding information about how diet plays a role. > > Thanks! > > > > > > > > > Tina M. Hendrix > Cure2000@... > Vice-President, California Coalition > Neuro-Immune Dysfunction Syndromes > Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, > etc. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Gluten free Casein Free Re: Fibromyalgia > What's a GFCF diet? > > > In a message dated 6/5/02 7:19:40 AM Eastern Daylight Time, > dmccreary@... writes: > > > > Hi , > > A good friend of mine has FM and she has noticed a huge difference being on > > a GFCF diet. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 , I should have added that in addition to a gluten free casein free diet my friend moved from the east coast to the mid-west, this could explain possible issues of pollen and mold. Fibromyalgia > I have had it for years and pollen and mold makes a huge negative impact on > me. Diet has a smaller effect. Kathy -NNY > > > Responsibility for the content of this message lies strictly with > the original author, and is not necessarily endorsed by or the > opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Thanks for the reply to my post! I've looked over the information about starting a chapter and am completely overwhelmed. I will pull that stuff out again in the fall when all three of my kids will be in school (hopefully preschool will go well for my 2 year old). In the meantime, I am at Marcia's disposal, but we had chatted about me helping you with the Parent Handbook and that you would have it after the 27th of May when you went in to work (I hope I have that right...my senior moments are coming more often). Anyway, I didn't want to leave you hanging if there is something that I can help you with, let me know. I've been doing some fundraising within my family, and the latest tally is $1000+ for the independent company to come in and review the records. I am still completely ignorant about the profit/nonprofit thing, and when Mark posted about the study needing funding I thought I'd make that my pet project. That's about it from my end. Please let me know when you will be in MD - I would love to meet you. ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Thank you all for responding to my post. I have forwarded them all to my friend. Thank you again! ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 ----- Original Message ----- From: M Pappadia I've been doing some fundraising within my family, and the latest tally is $1000+ for the independent company to come in and review the records. I am still completely ignorant about the profit/nonprofit thing, and when Mark posted about the study needing funding I thought I'd make that my pet project. Is this study to show the effectiveness of the protocol or is it limited to one medication? I don't remember reading about a study like this. I think it's a good idea since there won't be any credibility to this cause without this kind of study to publish. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Oops! This was supposed to go directly to Kathy on. Sorry! ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 - Sorry about the confusion. Marc Share posted a while back that they need to raise something like $12,000 for an independent company to come in and review and write a study about the medical records that Dr. G has. I agree that this would be a great boost for , so I'm doing what I can to help. I'll try to find Marc's original post and repost it. On Wed, 5 Jun 2002 19:46:45 -0700 " The Jueschkes " <meand.mygirls4@...> writes: > > ----- Original Message ----- > From: M Pappadia > I've been doing some fundraising within my > family, and the latest tally is $1000+ for the independent company > to > come in and review the records. I am still completely ignorant > about the > profit/nonprofit thing, and when Mark posted about the study > needing > funding I thought I'd make that my pet project. > > Is this study to show the effectiveness of the protocol or is it > limited to one medication? I don't remember reading about a study > like this. I think it's a good idea since there won't be any > credibility to this cause without this kind of study to publish. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Actually it is more like 145,000. 15 was to just get it started. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 This sounds like a reason and a specific amount for us to go after corporate America. is there a business plan or something tangible that we can have for the grant writing committee? > Actually it is more like 145,000. 15 was to just get it started. Kathy > > Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 , thank you for this inquiry. we are wnating to know that as well for the fundraising committee. > , > > Kathy has indicated to me that we need a study that looks at patients prior > to beginning treatment with standardized assessment and then follow them > through the protocol. She's starting this type of study at the end of the > month. Wouldn't it be better to put all our fundraising efforts to this > cause? It should also be independently done to avoid prejudice. What's > the word on that? > > > > Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 , Kathy has indicated to me that we need a study that looks at patients prior to beginning treatment with standardized assessment and then follow them through the protocol. She's starting this type of study at the end of the month. Wouldn't it be better to put all our fundraising efforts to this cause? It should also be independently done to avoid prejudice. What's the word on that? Re: Fibromyalgia - Sorry about the confusion. Marc Share posted a while back that they need to raise something like $12,000 for an independent company to come in and review and write a study about the medical records that Dr. G has. I agree that this would be a great boost for , so I'm doing what I can to help. I'll try to find Marc's original post and repost it. On Wed, 5 Jun 2002 19:46:45 -0700 " The Jueschkes " <meand.mygirls4@...> writes: > > ----- Original Message ----- > From: M Pappadia > I've been doing some fundraising within my > family, and the latest tally is $1000+ for the independent company > to > come in and review the records. I am still completely ignorant > about the > profit/nonprofit thing, and when Mark posted about the study > needing > funding I thought I'd make that my pet project. > > Is this study to show the effectiveness of the protocol or is it > limited to one medication? I don't remember reading about a study > like this. I think it's a good idea since there won't be any > credibility to this cause without this kind of study to publish. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 - Apparently I had some misinformation. I was going with the information that Marc Share, president of the coalition, sent out in December. I was continuing to fundraise for that effort and this is the first I've heard that it is impracticle. Thanks to Kathy for clearing that up. I also was unaware of her study and the need for funds. I'm waiting to hear back about some questions I've posted to one of the board members, so I'm on hold for now. I completely agree with Kathy about the validity of a study that starts at the beginning of treatment with standardized testing across the board. I guess I'm a bit disappointed that their wasn't a post about the other study being invalid. I wouldn't have had my family send checks earmarked for that project. On Thu, 6 Jun 2002 12:16:23 -0700 " The Jueschkes " <meand.mygirls4@...> writes: > , > > Kathy has indicated to me that we need a study that looks at > patients prior to beginning treatment with standardized assessment > and then follow them through the protocol. She's starting this type > of study at the end of the month. Wouldn't it be better to put all > our fundraising efforts to this cause? It should also be > independently done to avoid prejudice. What's the word on that? > > > > Re: Fibromyalgia > > > - > Sorry about the confusion. Marc Share posted a while back that > they need > to raise something like $12,000 for an independent company to come > in and > review and write a study about the medical records that Dr. G > has. I > agree that this would be a great boost for , so I'm doing what > I can > to help. I'll try to find Marc's original post and repost it. > > > On Wed, 5 Jun 2002 19:46:45 -0700 " The Jueschkes " > <meand.mygirls4@...> writes: > > > > ----- Original Message ----- > > From: M Pappadia > > I've been doing some fundraising within my > > family, and the latest tally is $1000+ for the independent > company > > to > > come in and review the records. I am still completely > ignorant > > about the > > profit/nonprofit thing, and when Mark posted about the study > > needing > > funding I thought I'd make that my pet project. > > > > Is this study to show the effectiveness of the protocol or is > it > > limited to one medication? I don't remember reading about a > study > > like this. I think it's a good idea since there won't be any > > credibility to this cause without this kind of study to > publish. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 I don't know that such a study would be invalid. Maybe it could propel other study efforts. For one thing, it could be done immediately (if the funds were there) as where the other study will need at least a year to produce it's first report. We have to start somewhere. ----- Original Message ----- From: M Pappadia Apparently I had some misinformation. I was going with the information that Marc Share, president of the coalition, sent out in December. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 I have charted my son since the beginning (only in Excel mind you) - all bloodwork 23 tests! - fascinating stuff emerging Kathy R has a copy of this - as does Dr G. With a big enough sample, there is validity in running all Dr G's patients, past and present into a database - there are specific statistical analysis packages that can cater for differing time points and unique issues about each sample member to produce usable information. The big issue I think is relating the measurables like blood work to cognitive functioning......hmmmmm! RW Re: Fibromyalgia , thank you for this inquiry. we are wnating to know that as well for the fundraising committee. > , > > Kathy has indicated to me that we need a study that looks at patients prior > to beginning treatment with standardized assessment and then follow them > through the protocol. She's starting this type of study at the end of the > month. Wouldn't it be better to put all our fundraising efforts to this > cause? It should also be independently done to avoid prejudice. What's > the word on that? > > > > Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 HI Luann,I used to work second shift and third shift long time ago. I loved it before I had kids and I was younger then. I also went to school parttime in the day while I worked nights. When I had my daughter (she's 21 now) everything changed ...I tried to stay working third shift still...but she kept getting ear infections cos I was moving her around at night, so I switched back to 2nd shift ...I worked in banks and when the work was done we left and got paid for 8 hrs even if we worked only 5 or 6. BUt she kept getting sick so eventually I moved to days and she got better .....but I hated days.....and eventually left that job and moved on to another bank and around that time got pregnant with my son.My dtr was 4 by then. So I went back to 2nd shift ...again in a bank and again worked till work was done ...seldom worked over 30 hrs a week and got paid for 40 but I ended up leaving that job on WC when I got carpal tunnel in both wrists.....but I loved second shift when the kids were young....I was a single parent , still am, and I used to have a sitter who took my kids in as like part of their family.I could get things done before I went to work(take kids to drs, laundry, car maintainence,etc).Anyway, I used to sleep when I could all week and on Sat try to sleep later and on Sunday even later...and yes it does screw up your clock....but if you have to work you have to work. Anyway, then I did 24 hour daycare for 5 yrs and about drove myself mad...went back to school and while going fulltime discvered I was ill with RA and FM...and soon I gave up school and now am on SS .....and Thank God ......I sleep when I need a nap, I sleep most nights fairly well, if not, I take something to help....it is very hard on the body tween the meds and trying to stay " normal " for your kids (well, somewhat normal)....Good luck ........Judy in AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Hi Luann, Welcome to our little family. Your reason for finding us is sad, although I hope that you will enjoy being with us as much as we enjoy getting to know you. I worked shift hours for several years when my children were young, however, I never had the firm diagnosis of fibromyalgia or RA. I was seeing a variety of doctors for all the problems, but no one could put all the pieces to the puzzle together. It was great for my kids as they didn't even think that Mom worked. I worked 10:00 pm to 6:30 am. So I was able to put them to bed and was home when they got up. All I remember is that I never got enough sleep just a series of naps throughout the day. The only one who said that I really had to get off third shift was my GYN doctor. He was beginning to see a pattern develop. Then I fell and my knee blew out and that is when the puzzle started to come together. I worked for American Express and they changed our shifts all the time, so by the time I was officially diagnosed, I had been put on day shift and then after a few short years, had to leave my job due to my illness. Shift work definitely does make the fatigue much more unbearable. You feel that you NEVER get enough sleep. I would think that with a doctor's note, that the company would have to make every attempt to accommodate your needs. Gentle, tender, 9-5 working girl angel hugs, Debs in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2003 Report Share Posted November 1, 2003 This question is in regard to the post from Aimee... how did they make the diagnosis of Fibromyalgia AND CMT? What are your symptoms? What meds have been prescribed? Have you had genetic testing to narrow down the type of CMT you have? I have a distant cousin who was diagnosed with Chronic Fatigue Syndrome, and his mother (my mom's first cousin) wonders if it is all CMT--I was just wondering how they make a dual diagnosis when symptoms can be similar? Thanks! Joyce S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 I just read it is being used for fibromyalgia. It's on the ldn website. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 Yes, LDN is use for fibromyalgia....there used to be several people with fibro, posting here. I don't know where they are now, but I think that there is a Fibro forum somewhere. Good luck to you. SallyC. > I just read it is being used for fibromyalgia. It's on the ldn website. Quote Link to comment Share on other sites More sharing options...
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