Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Just curious, but what are you doing to treat your Lyme? nne > > Sandi, > Hi Darlin, It is the Lyme. Ive done exstensive research > concerning Lyme. Lyme causes Inflammation to the nerve root itself. > I think Mononeuritis multiplex occures in late stage Lyme. > Mononeuritis multiplex could be described as:Pathophysiology: > Mononeuritis multiplex involves damage to at least 2 separate nerve > areas. This condition can become progressively worse over time. The > damage to the nerves involves destruction of the axon (ie, the part > of the nerve cell that is analogous to the copper part of a wire), > thus interfering with nerve conduction. Common causes of damage > include a lack of oxygen from decreased blood flow or inflammation > of blood vessels. Lyme in late stages also causes inflammation of > the spinal cord (myelitis). > Im positive it's Lyme thats causing the nerve dysfunction thus > causing pelvic floor dysfunction and a number of medical conditions. > Im trying to fight the Lyme and build my immune system. Ive noticed > doing this has led to improvment from my pelvic pain to my back > pain. Keep up the fight my friend. Remission is with in our reach. > Hugs, Tami > > > > > > > > > Hi Molly and Arline and all, > > > > You have both hit on why this is so frustrating. I guess almost > anyone with vulvar pain has pudendal neuralgia so it doesn't tell us > that much - or it could tell us volumes. It all depends on what is > causing the nerve irritation. Is it Lyme that is irritating the > nerves with neurotoxins? Is it gluten sensitivity that is causing > an autoimmune response and attacking nerves? Is it tight pelvic > floor muscles that are impinging on the nerves? > > > > That is what drives me crazy and why I go in circles. I went to > Beyond Basics and saw that they have a great approach to PT and > Nazneen will use some techniques like skin rolling that will be new > to me. She evaluated me and noted that I have severe muscle > problems, especially with the obdurator. > > > > But then it is like a chicken and egg mystery. Did the > Lyme/spirochete cause the pain which then caused the pelvic floor to > go into spasm or is it the pelvic floor itself that went into spasm > and the initial cause went away? If the Lyme is my true problem > will treating the pelvic floor w/o treating Lyme help me? WIll > treating Lyme w/o treating the pelvic floor help me? Do I need to > do both simultaneously? No wonder why getting well is so > difficult!!! > > > > This has cost me a fortune and it looks like going out of > network for PT and the Fibro Center for Lyme treatment will be a > fortune in itself. It is sooo frustrating that this is so outside > standard medicine. One shouldn't have to go out of network to get > PT and one shouldn't have to go out of network to be treated for > Lyme properly. > > > > OK, enough venting. I guess I have Lyme and pudendal neuralgia > and have to treat both at the same time. I just hope that I can > withstand the herxing enough to get my bottom to PT in NYC. That > will be a challenge in itself. > > > > Sandi > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Just curious, but what are you doing to treat your Lyme? nne > > Sandi, > Hi Darlin, It is the Lyme. Ive done exstensive research > concerning Lyme. Lyme causes Inflammation to the nerve root itself. > I think Mononeuritis multiplex occures in late stage Lyme. > Mononeuritis multiplex could be described as:Pathophysiology: > Mononeuritis multiplex involves damage to at least 2 separate nerve > areas. This condition can become progressively worse over time. The > damage to the nerves involves destruction of the axon (ie, the part > of the nerve cell that is analogous to the copper part of a wire), > thus interfering with nerve conduction. Common causes of damage > include a lack of oxygen from decreased blood flow or inflammation > of blood vessels. Lyme in late stages also causes inflammation of > the spinal cord (myelitis). > Im positive it's Lyme thats causing the nerve dysfunction thus > causing pelvic floor dysfunction and a number of medical conditions. > Im trying to fight the Lyme and build my immune system. Ive noticed > doing this has led to improvment from my pelvic pain to my back > pain. Keep up the fight my friend. Remission is with in our reach. > Hugs, Tami > > > > > > > > > Hi Molly and Arline and all, > > > > You have both hit on why this is so frustrating. I guess almost > anyone with vulvar pain has pudendal neuralgia so it doesn't tell us > that much - or it could tell us volumes. It all depends on what is > causing the nerve irritation. Is it Lyme that is irritating the > nerves with neurotoxins? Is it gluten sensitivity that is causing > an autoimmune response and attacking nerves? Is it tight pelvic > floor muscles that are impinging on the nerves? > > > > That is what drives me crazy and why I go in circles. I went to > Beyond Basics and saw that they have a great approach to PT and > Nazneen will use some techniques like skin rolling that will be new > to me. She evaluated me and noted that I have severe muscle > problems, especially with the obdurator. > > > > But then it is like a chicken and egg mystery. Did the > Lyme/spirochete cause the pain which then caused the pelvic floor to > go into spasm or is it the pelvic floor itself that went into spasm > and the initial cause went away? If the Lyme is my true problem > will treating the pelvic floor w/o treating Lyme help me? WIll > treating Lyme w/o treating the pelvic floor help me? Do I need to > do both simultaneously? No wonder why getting well is so > difficult!!! > > > > This has cost me a fortune and it looks like going out of > network for PT and the Fibro Center for Lyme treatment will be a > fortune in itself. It is sooo frustrating that this is so outside > standard medicine. One shouldn't have to go out of network to get > PT and one shouldn't have to go out of network to be treated for > Lyme properly. > > > > OK, enough venting. I guess I have Lyme and pudendal neuralgia > and have to treat both at the same time. I just hope that I can > withstand the herxing enough to get my bottom to PT in NYC. That > will be a challenge in itself. > > > > Sandi > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Just curious, but what are you doing to treat your Lyme? nne > > Sandi, > Hi Darlin, It is the Lyme. Ive done exstensive research > concerning Lyme. Lyme causes Inflammation to the nerve root itself. > I think Mononeuritis multiplex occures in late stage Lyme. > Mononeuritis multiplex could be described as:Pathophysiology: > Mononeuritis multiplex involves damage to at least 2 separate nerve > areas. This condition can become progressively worse over time. The > damage to the nerves involves destruction of the axon (ie, the part > of the nerve cell that is analogous to the copper part of a wire), > thus interfering with nerve conduction. Common causes of damage > include a lack of oxygen from decreased blood flow or inflammation > of blood vessels. Lyme in late stages also causes inflammation of > the spinal cord (myelitis). > Im positive it's Lyme thats causing the nerve dysfunction thus > causing pelvic floor dysfunction and a number of medical conditions. > Im trying to fight the Lyme and build my immune system. Ive noticed > doing this has led to improvment from my pelvic pain to my back > pain. Keep up the fight my friend. Remission is with in our reach. > Hugs, Tami > > > > > > > > > Hi Molly and Arline and all, > > > > You have both hit on why this is so frustrating. I guess almost > anyone with vulvar pain has pudendal neuralgia so it doesn't tell us > that much - or it could tell us volumes. It all depends on what is > causing the nerve irritation. Is it Lyme that is irritating the > nerves with neurotoxins? Is it gluten sensitivity that is causing > an autoimmune response and attacking nerves? Is it tight pelvic > floor muscles that are impinging on the nerves? > > > > That is what drives me crazy and why I go in circles. I went to > Beyond Basics and saw that they have a great approach to PT and > Nazneen will use some techniques like skin rolling that will be new > to me. She evaluated me and noted that I have severe muscle > problems, especially with the obdurator. > > > > But then it is like a chicken and egg mystery. Did the > Lyme/spirochete cause the pain which then caused the pelvic floor to > go into spasm or is it the pelvic floor itself that went into spasm > and the initial cause went away? If the Lyme is my true problem > will treating the pelvic floor w/o treating Lyme help me? WIll > treating Lyme w/o treating the pelvic floor help me? Do I need to > do both simultaneously? No wonder why getting well is so > difficult!!! > > > > This has cost me a fortune and it looks like going out of > network for PT and the Fibro Center for Lyme treatment will be a > fortune in itself. It is sooo frustrating that this is so outside > standard medicine. One shouldn't have to go out of network to get > PT and one shouldn't have to go out of network to be treated for > Lyme properly. > > > > OK, enough venting. I guess I have Lyme and pudendal neuralgia > and have to treat both at the same time. I just hope that I can > withstand the herxing enough to get my bottom to PT in NYC. That > will be a challenge in itself. > > > > Sandi > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hi Tami, nne, and everyone, I went to the FFC today and will begin my Lyme treatment. I got the script for Doxy 200mg twice a day, and Diflucan daily and Benicar. The Benicar is supposed to help with the Herx. So I need to do it in baby steps so I won't end up in the ER screaming for morphine again which happens every time I go on an antibiotic. TAMI - When you did antibiotics in the past did your pain ever get worse? I never knew whether it was herx, yeast, or allergy. I will start with daily Diflucan and then after a few days add the doxy at 50 mg twice a day for a week and then 100 mg twice a day for a week and then 150 mg twice a day and then 200. Hopefully, the pain won't escalate. I must admit I am encouraged by all the gals who tried the doxy and got better within weeks erasing years of disability. Perhaps this will be my answer. In addition I am going to Beyond Basic PT. To all those religious folks, please pray that I won't herx so bad that I will have to stop PT. It is quite strenuous for me to get to NYC and I am supposed to go twice a week. This involves a 3 hour train ride ( round trip) on Metronorth whose cars are so old the ride is equivalent to riding a horse. The cars have no shocks. Last time I took the train my labia was rubbed raw. Hopefully that won't happen again. So I'll keep you updated and appreciate your prayers. And Tami, when you get a chance please let me know if you ever had increased pain due to a past antibiotic. THANKS, Love, Sandi __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hi Tami, nne, and everyone, I went to the FFC today and will begin my Lyme treatment. I got the script for Doxy 200mg twice a day, and Diflucan daily and Benicar. The Benicar is supposed to help with the Herx. So I need to do it in baby steps so I won't end up in the ER screaming for morphine again which happens every time I go on an antibiotic. TAMI - When you did antibiotics in the past did your pain ever get worse? I never knew whether it was herx, yeast, or allergy. I will start with daily Diflucan and then after a few days add the doxy at 50 mg twice a day for a week and then 100 mg twice a day for a week and then 150 mg twice a day and then 200. Hopefully, the pain won't escalate. I must admit I am encouraged by all the gals who tried the doxy and got better within weeks erasing years of disability. Perhaps this will be my answer. In addition I am going to Beyond Basic PT. To all those religious folks, please pray that I won't herx so bad that I will have to stop PT. It is quite strenuous for me to get to NYC and I am supposed to go twice a week. This involves a 3 hour train ride ( round trip) on Metronorth whose cars are so old the ride is equivalent to riding a horse. The cars have no shocks. Last time I took the train my labia was rubbed raw. Hopefully that won't happen again. So I'll keep you updated and appreciate your prayers. And Tami, when you get a chance please let me know if you ever had increased pain due to a past antibiotic. THANKS, Love, Sandi __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hi Tami, nne, and everyone, I went to the FFC today and will begin my Lyme treatment. I got the script for Doxy 200mg twice a day, and Diflucan daily and Benicar. The Benicar is supposed to help with the Herx. So I need to do it in baby steps so I won't end up in the ER screaming for morphine again which happens every time I go on an antibiotic. TAMI - When you did antibiotics in the past did your pain ever get worse? I never knew whether it was herx, yeast, or allergy. I will start with daily Diflucan and then after a few days add the doxy at 50 mg twice a day for a week and then 100 mg twice a day for a week and then 150 mg twice a day and then 200. Hopefully, the pain won't escalate. I must admit I am encouraged by all the gals who tried the doxy and got better within weeks erasing years of disability. Perhaps this will be my answer. In addition I am going to Beyond Basic PT. To all those religious folks, please pray that I won't herx so bad that I will have to stop PT. It is quite strenuous for me to get to NYC and I am supposed to go twice a week. This involves a 3 hour train ride ( round trip) on Metronorth whose cars are so old the ride is equivalent to riding a horse. The cars have no shocks. Last time I took the train my labia was rubbed raw. Hopefully that won't happen again. So I'll keep you updated and appreciate your prayers. And Tami, when you get a chance please let me know if you ever had increased pain due to a past antibiotic. THANKS, Love, Sandi __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Sandi, No Sweety Ive never had increased pain with the antibiotic's. I think the way he is doing it may help. Instead of starting at 400mg. your gradually working up to it. Im wondering though if 400mg. is too much maybe stay at 300mg. for a while. I heard though that when your pain worsens it's the Lyme fighting to stay and nuerotoxins. I heard even though it seems like your getting worse your eradicating the bacteria thats fighting to stay. I'll pray for a peacful train trip. I noticed being on 1800mg. of neuroniton gives me energy and I took my x-mas stuff down today, did all the laundry and went grocery shopping. Im still pain free. Im getting ready to eat to take my last dose of doxcy. I cant believe how great im doing pain wise. stomack wise it's alot to take. Like I said before im going the homeopathic way to help deal with stomach issues from years of narcotic's and other meds. Im definitly going to do a detox and get a good probiotic. Im just waiting for that book to come in Good Luck Darlin, Tami Your in my prayers. > > Hi Tami, nne, and everyone, > > I went to the FFC today and will begin my Lyme treatment. I got the script for Doxy 200mg twice a day, and Diflucan daily and Benicar. The Benicar is supposed to help with the Herx. So I need to do it in baby steps so I won't end up in the ER screaming for morphine again which happens every time I go on an antibiotic. > > TAMI - When you did antibiotics in the past did your pain ever get worse? I never knew whether it was herx, yeast, or allergy. > > I will start with daily Diflucan and then after a few days add the doxy at 50 mg twice a day for a week and then 100 mg twice a day for a week and then 150 mg twice a day and then 200. Hopefully, the pain won't escalate. > > I must admit I am encouraged by all the gals who tried the doxy and got better within weeks erasing years of disability. Perhaps this will be my answer. > > In addition I am going to Beyond Basic PT. To all those religious folks, please pray that I won't herx so bad that I will have to stop PT. It is quite strenuous for me to get to NYC and I am supposed to go twice a week. This involves a 3 hour train ride ( round trip) on Metronorth whose cars are so old the ride is equivalent to riding a horse. The cars have no shocks. Last time I took the train my labia was rubbed raw. Hopefully that won't happen again. > > So I'll keep you updated and appreciate your prayers. And Tami, when you get a chance please let me know if you ever had increased pain due to a past antibiotic. > > THANKS, > Love, > Sandi > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 You go, Sandi!! I am so glad your FFC is doing such a great job. My sister wants an Igenex test and the FFC Dr. (the same one I left) won't give it to her. She's asked twice (she does have some symptoms but not vulvar related). She is going to have to go to my LLMD for the test. I wish you the best Molly (mojo) > > Hi Tami, nne, and everyone, > > I went to the FFC today and will begin my Lyme treatment. I got the script for Doxy 200mg twice a day, and Diflucan daily and Benicar. The Benicar is supposed to help with the Herx. So I need to do it in baby steps so I won't end up in the ER screaming for morphine again which happens every time I go on an antibiotic. > > TAMI - When you did antibiotics in the past did your pain ever get worse? I never knew whether it was herx, yeast, or allergy. > > I will start with daily Diflucan and then after a few days add the doxy at 50 mg twice a day for a week and then 100 mg twice a day for a week and then 150 mg twice a day and then 200. Hopefully, the pain won't escalate. > > I must admit I am encouraged by all the gals who tried the doxy and got better within weeks erasing years of disability. Perhaps this will be my answer. > > In addition I am going to Beyond Basic PT. To all those religious folks, please pray that I won't herx so bad that I will have to stop PT. It is quite strenuous for me to get to NYC and I am supposed to go twice a week. This involves a 3 hour train ride ( round trip) on Metronorth whose cars are so old the ride is equivalent to riding a horse. The cars have no shocks. Last time I took the train my labia was rubbed raw. Hopefully that won't happen again. > > So I'll keep you updated and appreciate your prayers. And Tami, when you get a chance please let me know if you ever had increased pain due to a past antibiotic. > > THANKS, > Love, > Sandi > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 You go, Sandi!! I am so glad your FFC is doing such a great job. My sister wants an Igenex test and the FFC Dr. (the same one I left) won't give it to her. She's asked twice (she does have some symptoms but not vulvar related). She is going to have to go to my LLMD for the test. I wish you the best Molly (mojo) > > Hi Tami, nne, and everyone, > > I went to the FFC today and will begin my Lyme treatment. I got the script for Doxy 200mg twice a day, and Diflucan daily and Benicar. The Benicar is supposed to help with the Herx. So I need to do it in baby steps so I won't end up in the ER screaming for morphine again which happens every time I go on an antibiotic. > > TAMI - When you did antibiotics in the past did your pain ever get worse? I never knew whether it was herx, yeast, or allergy. > > I will start with daily Diflucan and then after a few days add the doxy at 50 mg twice a day for a week and then 100 mg twice a day for a week and then 150 mg twice a day and then 200. Hopefully, the pain won't escalate. > > I must admit I am encouraged by all the gals who tried the doxy and got better within weeks erasing years of disability. Perhaps this will be my answer. > > In addition I am going to Beyond Basic PT. To all those religious folks, please pray that I won't herx so bad that I will have to stop PT. It is quite strenuous for me to get to NYC and I am supposed to go twice a week. This involves a 3 hour train ride ( round trip) on Metronorth whose cars are so old the ride is equivalent to riding a horse. The cars have no shocks. Last time I took the train my labia was rubbed raw. Hopefully that won't happen again. > > So I'll keep you updated and appreciate your prayers. And Tami, when you get a chance please let me know if you ever had increased pain due to a past antibiotic. > > THANKS, > Love, > Sandi > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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