Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 Your comment about it being difficult keeping with chronic pain, I am sure has touched so many of us. I am currently taking a mindfulness course, one that helps people deal with chronic pain and stress. It is all based on the mind-body connection and the work of Jon Kabat-Zinn. The instructor of the course is a doctor, a pain specialist who suffers from migraines herself; her personal experiences painted for a deep understanding. She has actually produced a set of four CDs with meditations that go along with the program. Many of her patients have been able to reduce their pain medications dramatically after taking a course. I highly recommend this type of program to anyone who suffers from chronic pain. It is refreshing to have a strong alternative or a strong support to dealing with pain every day, something that does not involve taking another pill. rheumatic Lyrica > Hi gang. My research doc gave me a sample of Lyrica for pain. It did > help my pain alot, however, I felt a little high and my appetite was > extreme. I think I gained around 10 pounds within 2 weeks. So....I > stopped taking it. It must work on the part of the brain for > appetite. I know I am vain. > > I am still taking percocet. Gosh....I am very tired of this chronic > pain. > > Susie > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 In a message dated 04/01/2006 11:18:50 GMT Standard Time, writes: I am pretty much confined to Plaquenil due to a very severe bout of pancytopenia several years ago. My Bone marrow shut down for no apparant reason...and I was on my way to Ireland! The amazing thing is, the plane developed engine problems, and had to turn back to the states. That saved my life, as I started to hemorrhage severly almost as soon as we landed. This was my miracle. Hi Marjory, Well, its not often we can say, " Glad your plane developed engine problems. " but this is one of those rare occasions. lol I hope you can get meds that help you soon. When are you getting your third bout of surgery? Is it soon? Good luck with it. Did you ever get to Ireland? What part were you going to? Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Carol; Just a thought here.Have you tried ALA? I had SD and terrible neuropathy and the absolute worst was when it hit the tri-geminal nerve in my face.Every tooth and left eye ball felt like the worst tooth ache ever.A few weeks on ALA did the trick. Lynne Carol Esposito wrote: > I was wondering if anyone has tried Lyrica. My dr wants me to try it > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > hesitant because of possible side effects such as sleepiness and weight > gain. Any feedback is appreciated > Carol E from NY > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hey girls, what's ALA and Lyrica? Please share. I have a patient with Sarcoidosis, whom I am teaching about A/P, who says she has developed Bell's Palsy which has affected one eye and her face. She says right now she looks like Quasimoto. This trigeminal nerve pain and eye inflammation sounds familiar. I want to know more about it.Dolores lynneandsantos <lynneandsantos@...> wrote: Hi Carol; Just a thought here.Have you tried ALA? I had SD and terrible neuropathy and the absolute worst was when it hit the tri-geminal nerve in my face.Every tooth and left eye ball felt like the worst tooth ache ever.A few weeks on ALA did the trick. Lynne Carol Esposito wrote: > I was wondering if anyone has tried Lyrica. My dr wants me to try it > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > hesitant because of possible side effects such as sleepiness and weight > gain. Any feedback is appreciated > Carol E from NY > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Dodo,ALA is Alpha Lipoic Acid and my doctor uses it intravenously for bad cases.Better just get your friend on MP as regular AP does not do much for Sarc.Does she know she has to avoid light like the plague?Sarcies have a real problem with light. Lynne mike rosner wrote: > Hey girls, what's ALA and Lyrica? Please share. I have a patient with > Sarcoidosis, whom I am teaching about A/P, who says she has developed > Bell's Palsy which has affected one eye and her face. She says right > now she looks like Quasimoto. This trigeminal nerve pain and eye > inflammation sounds familiar. I want to know more about it.Dolores > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Carol; > Just a thought here.Have you tried ALA? I had SD and terrible > neuropathy and the absolute worst was when it hit the tri-geminal nerve > in my face.Every tooth and left eye ball felt like the worst tooth ache > ever.A few weeks on ALA did the trick. Lynne > > Carol Esposito wrote: > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > hesitant because of possible side effects such as sleepiness and weight > > gain. Any feedback is appreciated > > Carol E from NY > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Lynne, Yes, she knows, Thanks to you. I went into my archives and found things you sent me from 2005 and 2006 that I had forgotten about. Since she is a shrink with a doctor title, I sent her Phases 1,2, & 3 of the protocol. I gave her enough material to fill 2 books. You have no idea how far your work is taking you. Kid, between your research and my story telling, we are waking the world up. I just got an e-mail from moveon.org re: MM's movie on healthcare, " Sicko " and boy did I send them back an e-mail. You know Mike & I did a commercial for them a few years back. We still have the tape. It is hilarious. I should have brought it with me when I visited you. But, I know we haven't seen the last of each other yet.I also got a call from Florida. I should be getting the C/D soon. I plan to slip it into the book as it really was written for my funeral as my goodbye to Mike. It's very touching. Thanks for telling me about Alpha Lipoic Acid. I will add that to my list of new things I have learned today and pass it on to my shrink friend. ~~~~~Love ya' Dodo lynneandsantos <lynneandsantos@...> wrote: Hi Dodo,ALA is Alpha Lipoic Acid and my doctor uses it intravenously for bad cases.Better just get your friend on MP as regular AP does not do much for Sarc.Does she know she has to avoid light like the plague?Sarcies have a real problem with light. Lynne mike rosner wrote: > Hey girls, what's ALA and Lyrica? Please share. I have a patient with > Sarcoidosis, whom I am teaching about A/P, who says she has developed > Bell's Palsy which has affected one eye and her face. She says right > now she looks like Quasimoto. This trigeminal nerve pain and eye > inflammation sounds familiar. I want to know more about it.Dolores > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Carol; > Just a thought here.Have you tried ALA? I had SD and terrible > neuropathy and the absolute worst was when it hit the tri-geminal nerve > in my face.Every tooth and left eye ball felt like the worst tooth ache > ever.A few weeks on ALA did the trick. Lynne > > Carol Esposito wrote: > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > hesitant because of possible side effects such as sleepiness and weight > > gain. Any feedback is appreciated > > Carol E from NY > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Dodo,I told you about the little cat that showed up here with the damaged paw.Bones o.k. but paw twisting in just like SD hands...well....I am using ALA on him along with antiinflamatory pills from the vet.We will see if it helps in a few weeks.Nerve damage was saused by what looks like a hit by a car as he was totally scratched up and not from a cat fight.Want to stirr up more s--t.Get MM and TM together.That should be a hoot,no? mike rosner wrote: > Hi Lynne, Yes, she knows, Thanks to you. I went into my archives and > found things you sent me from 2005 and 2006 that I had forgotten > about. Since she is a shrink with a doctor title, I sent her Phases > 1,2, & 3 of the protocol. I gave her enough material to fill 2 books. > You have no idea how far your work is taking you. Kid, between your > research and my story telling, we are waking the world up. I just got > an e-mail from moveon.org re: MM's movie on healthcare, " Sicko " and > boy did I send them back an e-mail. You know Mike & I did a commercial > for them a few years back. We still have the tape. It is hilarious. I > should have brought it with me when I visited you. But, I know we > haven't seen the last of each other yet.I also got a call from > Florida. I should be getting the C/D soon. I plan to slip it into the > book as it really was written for my funeral as my goodbye to Mike. > It's very touching. Thanks for telling me about Alpha Lip! oic Acid. I > will add that to my > list of new things I have learned today and pass it on to my shrink > friend. ~~~~~Love ya' Dodo > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Dodo,ALA is Alpha > Lipoic Acid and my doctor uses it intravenously for > bad cases.Better just get your friend on MP as regular AP does not do > much for Sarc.Does she know she has to avoid light like the > plague?Sarcies have a real problem with light. Lynne > > mike rosner wrote: > > > Hey girls, what's ALA and Lyrica? Please share. I have a patient with > > Sarcoidosis, whom I am teaching about A/P, who says she has developed > > Bell's Palsy which has affected one eye and her face. She says right > > now she looks like Quasimoto. This trigeminal nerve pain and eye > > inflammation sounds familiar. I want to know more about it.Dolores > > > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net> > > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Carol; > > Just a thought here.Have you tried ALA? I had SD and terrible > > neuropathy and the absolute worst was when it hit the tri-geminal nerve > > in my face.Every tooth and left eye ball felt like the worst tooth ache > > ever.A few weeks on ALA did the trick. Lynne > > > > Carol Esposito wrote: > > > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > > hesitant because of possible side effects such as sleepiness and > weight > > > gain. Any feedback is appreciated > > > Carol E from NY > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 I know of two acupuncturists in the No. VA area that treat trigeminal neuralgia as well as Bell's Palsy. For Bell's, I'd make sure it wasn't caused by Lyme's. I'm interested in ALA (is it Alpha Liopic Acid) re the TGN for my 80+ uncle who won't or can't get acupuncture. Maybe his family would agree to a supplement. Thanks, El _____ From: rheumatic [mailto:rheumatic ] On Behalf Of mike rosner Sent: Thursday, June 28, 2007 10:20 AM rheumatic Subject: Re: rheumatic Lyrica Hey girls, what's ALA and Lyrica? Please share. I have a patient with Sarcoidosis, whom I am teaching about A/P, who says she has developed Bell's Palsy which has affected one eye and her face. She says right now she looks like Quasimoto. This trigeminal nerve pain and eye inflammation sounds familiar. I want to know more about it.Dolores lynneandsantos <lynneandsantos@ <mailto:lynneandsantos%40citenet.net> citenet.net> wrote: Hi Carol; Just a thought here.Have you tried ALA? I had SD and terrible neuropathy and the absolute worst was when it hit the tri-geminal nerve in my face.Every tooth and left eye ball felt like the worst tooth ache ever.A few weeks on ALA did the trick. Lynne Carol Esposito wrote: > I was wondering if anyone has tried Lyrica. My dr wants me to try it > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > hesitant because of possible side effects such as sleepiness and weight > gain. Any feedback is appreciated > Carol E from NY > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Lynne, I'll bet TM has already seen MM's movie and even better, I think Garth and Nicholson are seeing it too. I just got an e-mail from a gal named Vicki. Wants to know why I'm going on M/P if I'm in remission. Read what I wrote her. I answered thru the Rheumatics . See if I explained it correctly because I still have lots more to learn. I have an appointment with a Dr. Whitman in NJ who is supposed to be fantastic. My appt is on Aug 6th. I'll let you know what, if anything, he's got to say. I found him because I am searching for a doc who knows about M/P. Getting ready for the fall. Love, to the whole family and a big hug & smooch to Santos. Thinking of him brings a big smile to my face. Love, Dodo & Mike lynneandsantos <lynneandsantos@...> wrote: Dodo,I told you about the little cat that showed up here with the damaged paw.Bones o.k. but paw twisting in just like SD hands...well....I am using ALA on him along with antiinflamatory pills from the vet.We will see if it helps in a few weeks.Nerve damage was saused by what looks like a hit by a car as he was totally scratched up and not from a cat fight.Want to stirr up more s--t.Get MM and TM together.That should be a hoot,no? mike rosner wrote: > Hi Lynne, Yes, she knows, Thanks to you. I went into my archives and > found things you sent me from 2005 and 2006 that I had forgotten > about. Since she is a shrink with a doctor title, I sent her Phases > 1,2, & 3 of the protocol. I gave her enough material to fill 2 books. > You have no idea how far your work is taking you. Kid, between your > research and my story telling, we are waking the world up. I just got > an e-mail from moveon.org re: MM's movie on healthcare, " Sicko " and > boy did I send them back an e-mail. You know Mike & I did a commercial > for them a few years back. We still have the tape. It is hilarious. I > should have brought it with me when I visited you. But, I know we > haven't seen the last of each other yet.I also got a call from > Florida. I should be getting the C/D soon. I plan to slip it into the > book as it really was written for my funeral as my goodbye to Mike. > It's very touching. Thanks for telling me about Alpha Lip! oic Acid. I > will add that to my > list of new things I have learned today and pass it on to my shrink > friend. ~~~~~Love ya' Dodo > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Dodo,ALA is Alpha > Lipoic Acid and my doctor uses it intravenously for > bad cases.Better just get your friend on MP as regular AP does not do > much for Sarc.Does she know she has to avoid light like the > plague?Sarcies have a real problem with light. Lynne > > mike rosner wrote: > > > Hey girls, what's ALA and Lyrica? Please share. I have a patient with > > Sarcoidosis, whom I am teaching about A/P, who says she has developed > > Bell's Palsy which has affected one eye and her face. She says right > > now she looks like Quasimoto. This trigeminal nerve pain and eye > > inflammation sounds familiar. I want to know more about it.Dolores > > > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net> > > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Carol; > > Just a thought here.Have you tried ALA? I had SD and terrible > > neuropathy and the absolute worst was when it hit the tri-geminal nerve > > in my face.Every tooth and left eye ball felt like the worst tooth ache > > ever.A few weeks on ALA did the trick. Lynne > > > > Carol Esposito wrote: > > > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > > hesitant because of possible side effects such as sleepiness and > weight > > > gain. Any feedback is appreciated > > > Carol E from NY > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Wow! he worked with Dr. Brown. Does he know Dr's Garth & Nicholson? I have the Henry Scammell books and the one he wrote with Dr. Brown. Got them at Amazon.com. Thru the last 2.5 yrs. Lynne G has sent me so much material. At first it boggled my mind as I was in a deep brain fog, so I just saved it and now I am so glad. I think somebody has to clip this e-mail and I don't know how. The thread is getting long. Somebody please clip it or we will get another e-mail telling us about netiquette. G'night and thanks for everything. Dolores aka Dodo DEBBIE GIBSON <Debbullwinkle@...> wrote: Delores, I just read this post...I do not know if DR W knows the MP...I do know that is is very familiar with the AP and worked with DR. Brown...Debb Re: rheumatic Lyrica Hi Lynne, I'll bet TM has already seen MM's movie and even better, I think Garth and Nicholson are seeing it too. I just got an e-mail from a gal named Vicki. Wants to know why I'm going on M/P if I'm in remission. Read what I wrote her. I answered thru the Rheumatics . See if I explained it correctly because I still have lots more to learn. I have an appointment with a Dr. Whitman in NJ who is supposed to be fantastic. My appt is on Aug 6th. I'll let you know what, if anything, he's got to say. I found him because I am searching for a doc who knows about M/P. Getting ready for the fall. Love, to the whole family and a big hug & smooch to Santos. Thinking of him brings a big smile to my face. Love, Dodo & Mike lynneandsantos <lynneandsantos@...> wrote: Dodo,I told you about the little cat that showed up here with the damaged paw.Bones o.k. but paw twisting in just like SD hands...well....I am using ALA on him along with antiinflamatory pills from the vet.We will see if it helps in a few weeks.Nerve damage was saused by what looks like a hit by a car as he was totally scratched up and not from a cat fight.Want to stirr up more s--t.Get MM and TM together.That should be a hoot,no? mike rosner wrote: > Hi Lynne, Yes, she knows, Thanks to you. I went into my archives and > found things you sent me from 2005 and 2006 that I had forgotten > about. Since she is a shrink with a doctor title, I sent her Phases > 1,2, & 3 of the protocol. I gave her enough material to fill 2 books. > You have no idea how far your work is taking you. Kid, between your > research and my story telling, we are waking the world up. I just got > an e-mail from moveon.org re: MM's movie on healthcare, " Sicko " and > boy did I send them back an e-mail. You know Mike & I did a commercial > for them a few years back. We still have the tape. It is hilarious. I > should have brought it with me when I visited you. But, I know we > haven't seen the last of each other yet.I also got a call from > Florida. I should be getting the C/D soon. I plan to slip it into the > book as it really was written for my funeral as my goodbye to Mike. > It's very touching. Thanks for telling me about Alpha Lip! oic Acid. I > will add that to my > list of new things I have learned today and pass it on to my shrink > friend. ~~~~~Love ya' Dodo > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Dodo,ALA is Alpha > Lipoic Acid and my doctor uses it intravenously for > bad cases.Better just get your friend on MP as regular AP does not do > much for Sarc.Does she know she has to avoid light like the > plague?Sarcies have a real problem with light. Lynne > > mike rosner wrote: > > > Hey girls, what's ALA and Lyrica? Please share. I have a patient with > > Sarcoidosis, whom I am teaching about A/P, who says she has developed > > Bell's Palsy which has affected one eye and her face. She says right > > now she looks like Quasimoto. This trigeminal nerve pain and eye > > inflammation sounds familiar. I want to know more about it.Dolores > > > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net> > > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Carol; > > Just a thought here.Have you tried ALA? I had SD and terrible > > neuropathy and the absolute worst was when it hit the tri-geminal nerve > > in my face.Every tooth and left eye ball felt like the worst tooth ache > > ever.A few weeks on ALA did the trick. Lynne > > > > Carol Esposito wrote: > > > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > > hesitant because of possible side effects such as sleepiness and > weight > > > gain. Any feedback is appreciated > > > Carol E from NY > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Delores, I just read this post...I do not know if DR W knows the MP...I do know that is is very familiar with the AP and worked with DR. Brown...Debb Re: rheumatic Lyrica Hi Lynne, I'll bet TM has already seen MM's movie and even better, I think Garth and Nicholson are seeing it too. I just got an e-mail from a gal named Vicki. Wants to know why I'm going on M/P if I'm in remission. Read what I wrote her. I answered thru the Rheumatics . See if I explained it correctly because I still have lots more to learn. I have an appointment with a Dr. Whitman in NJ who is supposed to be fantastic. My appt is on Aug 6th. I'll let you know what, if anything, he's got to say. I found him because I am searching for a doc who knows about M/P. Getting ready for the fall. Love, to the whole family and a big hug & smooch to Santos. Thinking of him brings a big smile to my face. Love, Dodo & Mike lynneandsantos <lynneandsantos@...> wrote: Dodo,I told you about the little cat that showed up here with the damaged paw.Bones o.k. but paw twisting in just like SD hands...well....I am using ALA on him along with antiinflamatory pills from the vet.We will see if it helps in a few weeks.Nerve damage was saused by what looks like a hit by a car as he was totally scratched up and not from a cat fight.Want to stirr up more s--t.Get MM and TM together.That should be a hoot,no? mike rosner wrote: > Hi Lynne, Yes, she knows, Thanks to you. I went into my archives and > found things you sent me from 2005 and 2006 that I had forgotten > about. Since she is a shrink with a doctor title, I sent her Phases > 1,2, & 3 of the protocol. I gave her enough material to fill 2 books. > You have no idea how far your work is taking you. Kid, between your > research and my story telling, we are waking the world up. I just got > an e-mail from moveon.org re: MM's movie on healthcare, " Sicko " and > boy did I send them back an e-mail. You know Mike & I did a commercial > for them a few years back. We still have the tape. It is hilarious. I > should have brought it with me when I visited you. But, I know we > haven't seen the last of each other yet.I also got a call from > Florida. I should be getting the C/D soon. I plan to slip it into the > book as it really was written for my funeral as my goodbye to Mike. > It's very touching. Thanks for telling me about Alpha Lip! oic Acid. I > will add that to my > list of new things I have learned today and pass it on to my shrink > friend. ~~~~~Love ya' Dodo > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Dodo,ALA is Alpha > Lipoic Acid and my doctor uses it intravenously for > bad cases.Better just get your friend on MP as regular AP does not do > much for Sarc.Does she know she has to avoid light like the > plague?Sarcies have a real problem with light. Lynne > > mike rosner wrote: > > > Hey girls, what's ALA and Lyrica? Please share. I have a patient with > > Sarcoidosis, whom I am teaching about A/P, who says she has developed > > Bell's Palsy which has affected one eye and her face. She says right > > now she looks like Quasimoto. This trigeminal nerve pain and eye > > inflammation sounds familiar. I want to know more about it.Dolores > > > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net> > > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Carol; > > Just a thought here.Have you tried ALA? I had SD and terrible > > neuropathy and the absolute worst was when it hit the tri-geminal nerve > > in my face.Every tooth and left eye ball felt like the worst tooth ache > > ever.A few weeks on ALA did the trick. Lynne > > > > Carol Esposito wrote: > > > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > > hesitant because of possible side effects such as sleepiness and > weight > > > gain. Any feedback is appreciated > > > Carol E from NY > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Thanks for all the replies on Lyrica and ALA as well. I may try the ALA first--I never did try it. Any suggestions as to dosage and recommended brands? Thanks! Carol lynneandsantos wrote: > > Hi Carol; > Just a thought here.Have you tried ALA? I had SD and terrible > neuropathy and the absolute worst was when it hit the tri-geminal nerve > in my face.Every tooth and left eye ball felt like the worst tooth ache > ever.A few weeks on ALA did the trick. Lynne > > Carol Esposito wrote: > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > hesitant because of possible side effects such as sleepiness and weight > > gain. Any feedback is appreciated > > Carol E from NY > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Discussion on the use of long term low dosage of antibiotics for the treatment of auto-immune diseases such as Scleroderma, Lup rheumatic Digest Number 4061 Discussion on the use of long term low dosage of antibiotics for the treatment of auto-immune diseases such as Scleroderma, Lup Messages In This Digest (25 Messages) 1a. Re: Lyrica From: lynneandsantos 1b. Re: Lyrica From: mike rosner 1c. Re: Lyrica From: lynneandsantos 1d. Re: Lyrica From: mike rosner 1e. Re: Lyrica From: lynneandsantos 1f. Re: Lyrica From: ehgooding 1g. Re: Lyrica From: mike rosner 1h. Re: Lyrica From: DEBBIE GIBSON 1i. Re: Lyrica From: mike rosner 2a. Re: Unvarying Rheumatoid Factor From: mike rosner 2b. Re: Unvarying Rheumatoid Factor From: mike rosner 2c. Re: Unvarying Rheumatoid Factor From: DEBBIE GIBSON 2d. Re: Unvarying Rheumatoid Factor From: mike rosner 3a. Re: immune system From: mike rosner 3b. Re: immune system From: mike rosner 3c. Re: immune system From: Vicki 3d. Re: immune system From: mike rosner 3e. Re: immune system From: Vicki 3f. Re: immune system From: DEBBIE GIBSON 4a. Re: Kangto posts From: mike rosner 4b. Re: Kangto posts From: Probert 4c. Re: Kangto posts From: C Stonkey 5a. Re: Solving The Puzzling Problem of Arthritis From: DEBBIE GIBSON 5b. Re: Solving The Puzzling Problem of Arthritis From: mike rosner 6. Fwd: Scleroderma out of remission From: Chas & Adlard View All Topics | Create New Topic Messages 1a. Re: Lyrica Posted by: " lynneandsantos " lynneandsantos@... lynnei2003 Thu Jun 28, 2007 6:47 am (PST) Hi Carol; Just a thought here.Have you tried ALA? I had SD and terrible neuropathy and the absolute worst was when it hit the tri-geminal nerve in my face.Every tooth and left eye ball felt like the worst tooth ache ever.A few weeks on ALA did the trick. Lynne Carol Esposito wrote: > I was wondering if anyone has tried Lyrica. My dr wants me to try it > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > hesitant because of possible side effects such as sleepiness and weight > gain. Any feedback is appreciated > Carol E from NY > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Dolores, Bell's Palsy can be a significant symptom of lyme disease. I hope that your patient has seriously considered that and it may be beneficial for her to have at least a month's worth of antibiotic tx for lyme disease to see if the Bell's Palsy resolves. Hopefully, as a dr she hasn't been broadsided by some of mainstream medicine's dismissal of lyme disease. There is a psychiatrist out of a hospital in NYC who supposedly is good with lyme disease--Dr Fallon--well at least that is what I heard a few years ago. Carol mike rosner wrote: > > Hey girls, what's ALA and Lyrica? Please share. I have a patient with > Sarcoidosis, whom I am teaching about A/P, who says she has developed > Bell's Palsy which has affected one eye and her face. She says right > now she looks like Quasimoto. This trigeminal nerve pain and eye > inflammation sounds familiar. I want to know more about it.Dolores > > lynneandsantos <lynneandsantos@... > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Carol; > Just a thought here.Have you tried ALA? I had SD and terrible > neuropathy and the absolute worst was when it hit the tri-geminal nerve > in my face.Every tooth and left eye ball felt like the worst tooth ache > ever.A few weeks on ALA did the trick. Lynne > > Carol Esposito wrote: > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > hesitant because of possible side effects such as sleepiness and weight > > gain. Any feedback is appreciated > > Carol E from NY > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 Discussion on the use of long term low dosage of antibiotics for the treatment of auto-immune diseases such as Scleroderma, LupOops - forgot to delete non-essential info from that post. OK - just what is this Lyrica? Geoff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 Hi Carol; I am always extremely careful when I try a new supplement.I took 100mg a day for a week and then when I saw there was no problem I raised it to 200.I am using 50mg every second day on our little stray cat with the damaged paw.I'll let you know if I see results. Lynne G./SD Carol Esposito wrote: > Thanks for all the replies on Lyrica and ALA as well. I may try the ALA > first--I never did try it. Any suggestions as to dosage and > recommended brands? > Thanks! > Carol > > lynneandsantos wrote: > > > > Hi Carol; > > Just a thought here.Have you tried ALA? I had SD and terrible > > neuropathy and the absolute worst was when it hit the tri-geminal nerve > > in my face.Every tooth and left eye ball felt like the worst tooth ache > > ever.A few weeks on ALA did the trick. Lynne > > > > Carol Esposito wrote: > > > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > > hesitant because of possible side effects such as sleepiness and > weight > > > gain. Any feedback is appreciated > > > Carol E from NY > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 Hi Lynne, This is Dodo! How is the kitten's paw doing? You should have been a vet. Glad you got the clips and glad you found some in your city. If I wasn't in so much debt from PR. I'd be up there this week to see you. I really don't give a rat's ass about the festival. But it was great meeting with you & Santos last year. Looking forward to next year maybe, if we get the RV up to N.Y.~~~~Love, Dodo lynneandsantos <lynneandsantos@...> wrote: Hi Carol; I am always extremely careful when I try a new supplement.I took 100mg a day for a week and then when I saw there was no problem I raised it to 200.I am using 50mg every second day on our little stray cat with the damaged paw.I'll let you know if I see results. Lynne G./SD Carol Esposito wrote: > Thanks for all the replies on Lyrica and ALA as well. I may try the ALA > first--I never did try it. Any suggestions as to dosage and > recommended brands? > Thanks! > Carol > > lynneandsantos wrote: > > > > Hi Carol; > > Just a thought here.Have you tried ALA? I had SD and terrible > > neuropathy and the absolute worst was when it hit the tri-geminal nerve > > in my face.Every tooth and left eye ball felt like the worst tooth ache > > ever.A few weeks on ALA did the trick. Lynne > > > > Carol Esposito wrote: > > > > > I was wondering if anyone has tried Lyrica. My dr wants me to try it > > > for fibromyalgia symptoms, as well as for neuropathy in the feet. I'm > > > hesitant because of possible side effects such as sleepiness and > weight > > > gain. Any feedback is appreciated > > > Carol E from NY > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 I was wondering about the long tail. I would have snipped, but still can't figure out how. Glad you did it. I asked someone else to snip another long tail for me. I guess they did. Thanks.. Dolores Geoff <geoff@...> wrote: Discussion on the use of long term low dosage of antibiotics for the treatment of auto-immune diseases such as Scleroderma, LupOops - forgot to delete non-essential info from that post. OK - just what is this Lyrica? Geoff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Has anyone tried to take Lyrica? I am trying it for the second time and it makes me so drunk! The doc says I will get used to it and it's the only thing that will help the constant pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Hi, My neuropathic pain is no longer being alleviated after many years of taking Neurontin...even in high doses. Has anyone on the list had success with Lyrica? As I have exceeded my pharmacy benefits for the year, I will be paying out of pocket and need to know if I'm wasting my money, and if not, the best place to purchase it. Thanks, Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 > > > Hi, > My neuropathic pain is no longer being alleviated after many years of taking Neurontin...even in high doses. Has anyone on the list had success with Lyrica? As I have exceeded my pharmacy benefits for the year, I will be paying out of pocket and need to know if I'm wasting my money, and if not, the best place to purchase it. > > Thanks, > Joan > I have fibromyalgia and CIFDS. I am taking lyrica now and it has helped me not need so many pain pills throughout the day. One of the most commom side effects is weight gain. The theory is that if the meds make you feel well enough to exercise, that's exactly what you should do. otherwise sedentary lifestyle is more likely to develop this side effect. Not all people experience this....i haven't and I have not been really well enough to stay on a regular exercise program. I am being tested for Lyme and Co-Infections day after tomorrow. Everyone that I speak with about my symptoms says there's no doubt I have chronic Lyme since I did have it as a teenager: bull's eye rash from an engorged tick, flu symptoms, two weeks of antibiotics. Dr didn't do any bloodwork since it was classic text book rash. I had no idea at the time that it could affect me the rest of my life. Anyway, the Lyrica has helped, but my rheumatologist told me that most ppl have to take it in large quantities to get maximum benefit from it. Good Luck! stendahl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 I agree with . If you look at the symptoms listed for Fibromyalgia (exotic sounding name) they are exactly the same as lyme symptoms. cathleen wrote: > > There isn't any such thing as Fibromyalgia. It's a made up name for > Chronic > Lyme! > > Please see the movie www.underourskin.com/dvd and/or read the book " Cure > Unknown Inside the Lyme Epidemic " by Pamela Weintrub (this is > fantastic for > an in-depth history of the problems plaguing lyme victims in getting > treatment) > > Rheumatologists haven't a clue and are not going to be helping you get > better from this. Educate yourself and seek another treatment! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 Everyone I find is different with Lyrica.....I had a friend try it and she felt horrible...I take it twice daily and I find it to be a miracle drug.......but Lori is right, samples at first for sure! From: Lori <lori621@...> Subject: [ ] Lyrica Date: Wednesday, September 24, 2008, 11:16 AM I have taken Lyrica, and I do not find it does anything. I don't notice a difference if I take it or not. However, I'm so immune to any kind of pain meds it's rediculous. Maybe it's just not strong enough for my tolerance. I have insurance and it is REALLY expensive, so I can't even imagine paying for it outright. I would ask the doc for a sample to try before you buy the whole thing. Best of luck, Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2008 Report Share Posted September 25, 2008 No, not everyone diagnosed with fibromyalgia has diagnosed or undiagnosed Lyme. There are many causes, including liver problems. Many women with breast implants have " fibro " . What they really have is a toxic liver from the chemicals in the implant. The fibro can only be relieved by removing the implant and detoxing. Kenda > > > I agree that fibromyalgia in itself is not a disease, but just a term for > unidentified pain in your muscles and/or joints. I do not, however, believe > everyone with fibromyalgia diagnoses has Lyme. Maybe a large percentage is > unidentified Lyme, but the rest could just as well be autoimmune disease, > other > co-infections or illnesses not yet identified. > > Dagmar > > > > **************Looking for simple solutions to your real-life financial > challenges? Check out WalletPop for the latest news and information, tips and > calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 My pleasure Andréa! We need to get the word out to all those suffering from Lyme and not even knowing it. It just so sickens me when I think about it. My wife does seminars and we show the movie over and over locally but it is still so hard to reach the people affected! > [ ] Re: Lyrica > > I completely agree that there is no such thing as Fibro and CFIDS, > it's just what they (the local yocals) diagnosed me with. I recently > ran into this Lyme concept and joined this group. I also bought the > dvd " under our skin " and it came in the mail yesterday. I watched it > and am absolutely convinced this is it. I also have a doctor appt > tomorrow with a doctor that says he treats " chronic Lyme " . I have a > two page list of questions for him. My mother is going with me since > we watched the video together. She is also convinced. She is a master > massage therapist that works with Fibro and CFIDS patients! She/we are > very interested in learning as much as we can. The doctor that I see > tomorrow is local but an alternative MD that does not accept > insurance. He looks for and treats " unconventional " things. Sounds > like my kinda guy. I see the rheumatologist to get my pain meds until > I can get a legit diagnosis. My appt with Dr Crist in Springfield, MO > is in December, and he is the LLMD that I plan to see long term if I > can afford it. > > Thanks for the feedback . > Sincerely, > > > Quote Link to comment Share on other sites More sharing options...
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