Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 JUDI, I wish I could answer this. If I could afford HBOT, I would try it. I do not believe that it will cure CMT but wonder if the increased cellular metabolism to the damaged nerves could improve function. It does with many other conditions. I am VERY familiar with HBOT and it's use for many conditions that are not covered by insurance. I personally saw a total remission of symptoms in a 14 year old with chronic RSD. She went from constant severe pain, uncontrollable with any narcotic and needing assistance to walk to being able to run in 2 weeks!! She has recently tried out for she schools.dance team!! Over 90% of RSD patients treated have marked positive results. In " Numb Toes and Aching Soles : Coping With Peripheral Neuropathy " by Dr A. Senneff, is a brief mention that it may be helpful for " peripheral neuropathy " , but does not specifically mention CMT. I asked in " Ask the Experts " on the MDA site and got the following response: REPLY [1] from MDA: E. Shy, M.D., Wayne State University School of Medicine, Detroit, MI I am not aware of any cases of CMT which have been treated with hyperbaric oxygen. I know of no reason, outside of the expense, why such treatment would be harmful to a patient. However, I would emphasize that CMT disorders are chronic and it is hard to imagine how a brief spell in a pressure chamber could provide chronic support. Moreover, there is no information I am aware of that suggests there is reduced amounts of oxygen to either neurons or Schwann cells in inherited neuropathies or other forms of neuropathy. REPLY [2] from MDA: A. , M.D., MDA Clinic Director, Tulane University Medical School, New Orleans, LA Hyperbaric oxygen treatment (HBOT) is great for decompression sickness and to speed the healing of some infections. It appears to me that HBOT is now in use or for all types of illnesses. I do not know of any research done using HBOT in any type of CMT. I doubt HBOT is helpful for any type of CMT. However, I also believe it's safe to use. The defects in the demyelinating types of CMT are in some of the myelin proteins (PMP22 in 1A; P0 myelin in 1B; conexin in CMTX etc.). Some of he CMT2 types seem to be due to defects in neurofilament light and medium axonal proteins. Increasing the oxygenation of the nerves is not going to modify the genetic defect or modify protein defects. We may need to wait for some form of gene therapy or gene modification to treat these disorders. There are medications that control the pain in neuropathies -- you need to consult your neurologist. I do feel that like for most similar conditions that it would take at least a series of 20 treatments to see any results that MIGHT happen. HBOT is usually harmless to anyone other than those with SEVERE emphysema. If I had the chance to try at no cost I would jump at it. Several articles from other countries have mentioned the possibility that it will help CMT, but I have been unable to find ONE case where it has been tried. By all means let us know if you try it. I would also like to know about your granddaughter and any results. You may feel free to mail me directly about that. If you are not aware of it a good site including forum is: http://hyperbaric-forum.com I have dozens of HBOT sites including a listing of virtually every chamber in the US. There are many things it will not help, but thousands of documented cases of successful treatment for many things not covered by insurance. As a retired medical professional, I feel that all of its uses are just beginning to be found. I only hope CMT MAY be one thing it will help. Good luck for your granddaughter and you if you try. ----- Original Message ----- From: john dawson egroups Sent: Friday, January 05, 2001 10:13 AM Subject: [] hyperbaric therapy Is hyperbaric oxygen therapy of any help for CMT? We are preparing to get hbot for my handicapped granddaughter. If hbot was of any help I will dive with her.We may have a multi place mobil chamber coming to her home in late Feb. If anyone is interested in coming we would be able to put them up and feed them. Our family has been having fundraisers for Bekah to receive this. Since October we've raised $12,000. It isn't paid for by insurance for her but could be for me. Our fundraising for Bekah was phenomenal. We had a bake sale that raised $700. A skating party that raised $505. A chicken pot pie dinner that sold 680 tickets at $6.00 per ticket. Most of the food was donated and the hall to make it all was donated. We sold candy constantly about $4000 and contributions from cans in stores and people just making donations. We were contacted last night about having a benefit breakfast by the Ruritan Club here. My daughter laughed when they told her she would be given 25 tickets to sell. After selling the pot pie tickets, 25 is a drop in the bucket.. Oh well just rambling here. Gotta get ready to go babysit my two youngest grandsons, Zachary 2.5 and 1 year. Judi eGroups Sponsor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 Dennis, Lamar here, Sorry, I did not explain that in more detail. It is Hyperbaric Oxygen Therapy. It is the same that is used with deep water divers to prevent the " bends " after surfacing too fast. You are in a chamber with pure oxygen under pressure equivalent to a deep dive. The oxygen level in the body increases many times. It has many other accepted medical uses, including treating slow healing wounds. The increased oxygen stimulates damaged cells. In therapeutic use the number of treatments vary but it is usually at least a series of 20 one hour treatments (one twice a day for 10 days) A web search for 'hyperbaric oxygen " will turn up many sites with additional information. ----- Original Message ----- From: Dennis Overskov egroups Sent: Sunday, January 07, 2001 03:52 AM Subject: Sv: [] hyperbaric therapy what is HBOT?? I`m from danmark so I dont know all your shotcut on words. ----- Original Message ----- From: Lamar son <lls@...> <egroups> Sent: Friday, January 05, 2001 9:54 PM Subject: Re: [] hyperbaric therapy > JUDI, > I wish I could answer this. If I could afford HBOT, I would try it. I do not believe that it will cure CMT but wonder if the increased cellular metabolism to the damaged nerves could improve function. It does with many other conditions. I am VERY familiar with HBOT and it's use for many conditions that are not covered by insurance. I personally saw a total remission of symptoms in a 14 year old with chronic RSD. She went from constant severe pain, uncontrollable with any narcotic and needing assistance to walk to being able to run in 2 weeks!! She has recently tried out for she schools.dance team!! Over 90% of RSD patients treated have marked positive results. > > In " Numb Toes and Aching Soles : Coping With Peripheral Neuropathy " > by Dr A. Senneff, is a brief mention that it may be helpful > for " peripheral neuropathy " , but does not specifically mention > CMT. > > I asked in " Ask the Experts " on the MDA site and got the following response: > > REPLY [1] from MDA: E. Shy, M.D., Wayne State University > School of Medicine, Detroit, MI > > I am not aware of any cases of CMT which have been treated with > hyperbaric oxygen. I know of no reason, outside of the expense, > why such treatment would be harmful to a patient. However, I > would emphasize that CMT disorders are chronic and it is hard to > imagine how a brief spell in a pressure chamber could provide > chronic support. Moreover, there is no information I am aware of > that suggests there is reduced amounts of oxygen to either > neurons or Schwann cells in inherited neuropathies or other forms > of neuropathy. > > REPLY [2] from MDA: A. , M.D., MDA Clinic Director, > Tulane University Medical School, New Orleans, LA > > Hyperbaric oxygen treatment (HBOT) is great for decompression > sickness and to speed the healing of some infections. It appears > to me that HBOT is now in use or for all types of illnesses. I do > not know of any research done using HBOT in any type of CMT. I > doubt HBOT is helpful for any type of CMT. However, I also > believe it's safe to use. The defects in the demyelinating types > of CMT are in some of the myelin proteins (PMP22 in 1A; P0 myelin > in 1B; conexin in CMTX etc.). Some of he CMT2 types seem to be > due to defects in neurofilament light and medium axonal proteins. > Increasing the oxygenation of the nerves is not going to modify > the genetic defect or modify protein defects. We may need to wait > for some form of gene therapy or gene modification to treat these > disorders. There are medications that control the pain in > neuropathies -- you need to consult your neurologist. > > I do feel that like for most similar conditions that it would take at least a series of 20 treatments to see any results that MIGHT happen. HBOT is usually harmless to anyone other than those with SEVERE emphysema. If I had the chance to try at no cost I would jump at it. Several articles from other countries have mentioned the possibility that it will help CMT, but I have been unable to find ONE case where it has been tried. > > By all means let us know if you try it. I would also like to know about your granddaughter and any results. You may feel free to mail me directly about that. > > If you are not aware of it a good site including forum is: > http://hyperbaric-forum.com > > I have dozens of HBOT sites including a listing of virtually every chamber in the US. There are many things it will not help, but thousands of documented cases of successful treatment for many things not covered by insurance. As a retired medical professional, I feel that all of its uses are just beginning to be found. I only hope CMT MAY be one thing it will help. > > Good luck for your granddaughter and you if you try. > > > > > ----- Original Message ----- > From: john dawson > egroups > Sent: Friday, January 05, 2001 10:13 AM > Subject: [] hyperbaric therapy > > > Is hyperbaric oxygen therapy of any help for CMT? > We are preparing to get hbot for my handicapped granddaughter. > If hbot was of any help I will dive with her.We may have a multi > place mobil chamber coming to her home in late Feb. If anyone is > interested in coming we would be able to put them up and feed them. > Our family has been having fundraisers for Bekah to receive this. > Since October we've raised $12,000. It isn't paid for by insurance > for her but could be for me. > Our fundraising for Bekah was phenomenal. We had a bake > sale that raised $700. A skating party that raised $505. > A chicken pot pie dinner that sold 680 tickets at $6.00 per ticket. > Most of the food was donated and the hall to make it all was donated. > We sold candy constantly about $4000 and contributions from cans > in stores and people just making donations. We were contacted last night > about having a benefit breakfast by the Ruritan Club here. My daughter > laughed when they told her she would be given 25 tickets to sell. After > selling the pot pie tickets, 25 is a drop in the bucket.. Oh well just > rambling here. > Gotta get ready to go babysit my two youngest grandsons, Zachary 2.5 and > 1 year. > Judi > > > eGroups Sponsor > > > Quote Link to comment Share on other sites More sharing options...
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