Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 IHi , I am using a rife machine and also colloidal silver. Christy n a message dated 6/25/00 11:57:30 AM Pacific Daylight Time, kj-mj@... writes: << Subj: [ ] Alternative treatments Date: 6/25/00 11:57:30 AM Pacific Daylight Time From: kj-mj@... ( Jay) Reply-to: egroups egroups Hi. Has anyone here used blood electrification treatment (i.e., Dr. 's " zapper " , Beck's " black box " and " magnetic pulser " )? How about ultraviolet blood irradiation (UVB)? UVB is supposed to be a safe, century-old treatment for bacterial infection. It went out of favor with the introduction of abx. I have not found anything negative about it yet. I have, however, found an expensive source (an alternative MD) who suggested 20 treatments, and a conflicting source that says one UBI treatment can cure pneumonia. I have found no literature about it's efficacy in treating Lyme. I am still looking! Any sites you can recommend with more information on this? I'm just surprised that the main treatments recommended to me (other than abxs) have not been mentioned here. Have they been discussed in the past? Any horror stories, successes?? Any other alternative treatments that show promise? Thanks >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 In a message dated 6/26/00 3:12:43 AM Pacific Daylight Time, kj-mj@... writes: << Subj: Re: [ ] Alternative treatments Date: 6/26/00 3:12:43 AM Pacific Daylight Time From: kj-mj@... ( Jay) Reply-to: egroups egroups Christy, Have the Rife machine and colloidal silver helped? Have you heard of the zapper? Why did you choose the Rife machine? Best wishes and thanks, >> Hi , Seem to be helping a little so far. That is just what I was led to I guess...also the devices based on Bob Beck by Sota (www.sota-inc.com are another option. In fact a woman using a device simlar to those by a Forrester is reporting success with CFS. She started a list called Beck-n-stuff. Keep in touch. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2000 Report Share Posted August 22, 2000 Hi - First of all - thanks for the kind words, although I really didn't help set up the website (do you mean e-groups or the All About Achalasia site). I wrote one newsletter for that site and another is in the works. For that site, you'd need to thank Donn Davy who did a tremendous job! Secondly, I live in Chicago, too! So - are we like the only two people in our area with this dreaded condition? Do you have a gastroenterologist and surgeon treating you? If not, I can highly recommend my team. Have not heard of any alternative or holistic treatments for the disease and Europe seems to be doing the same things we are. Only new treatment option I've heard of in a long time is the use of - believe it or not - Viagra and it's too soon to tell if this is effective. (Although, I suppose, if you can't have dinner you can always go right on to ....). Using good meetasearch engines like dogpile or ixquick and typing in achalasia as the keyword brings up a wealth of research information. If you'd like to trade non-email ways of contact since we live in the same neck of the woods, let me know. Take care - Carol Alternative Treatments > Hi everyone. I'm new to this group, living in Chicago, and recently > diagnosed with achalasia. I have a bunch of questions to ask while I > am preparing myself for the inevitable(?) laparoscopic myotomy. > > Right now, I am curious as to the existance of alternate or > experimental treatments for the disorder. > > Is there a resource where such information exists? (How do they > treat achalasia in Europe or in other parts of the world?) > > Are there any new treatments on the horizon that could be available > in the next 5 years? > > Is anyone working on this in the scientific community, especially at > the " cellular level " ? What does the world of " alternative " > or " holistic " medicine have to say about achalasia? > > Specific answers or ideas as to " where to look " would be > enlightening ... > > Swack > > P.S. Special thanks to Carol Haggas for informative messages and for > helping to set up the achalasia web site! > > > > > > > > ____________NetZero Free Internet Access and Email_________ Download Now http://www.netzero.net/download/index.html Request a CDROM 1-800-333-3633 ___________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2000 Report Share Posted August 26, 2000 Carol Thanks for your note. Excuse me for overstating your contribution to the Achalasia web site - I will have to thank Donn. I probably had in mind your helpful comments scattered about this archive when I wrote the note. I have visited two of Chicago's achalasia specialists: one at Northwestern Medical Center and one at the University of Chicago. I am a candidate for myotomy and just met with a surgeon today who has done 50+ laparoscopic Heller myotomies. I also visited an alternative medicine clinic in an attempt to find a less invasive approach to treating achalasia. The people I spoke to in the world of alternative medicine have not heard of this condition - but it seems there is some familiarity with swallowing problems. These people are recommending acupuncture (and herbs). I'm curious and doubtful but considering trying this in the interim. I'm going to do some web searches on achalasia and acupuncture & see if anything comes up. I have to believe people get this disorder all over the world and have been getting it for hundreds of years. Perhaps alternative solutions exist. You mentioned your surgeon/physician team - who are they and where do they practice? As for the achalasia population - I suppose that there are dozens - maybe a couple hundred in the Chicago area - so we are not alone. There is one new case for every 100,000 people each year. (Guess this was my year.) The doc I saw at the U of Chicago claims to have encountered 1000 achalasia patients over the course of his career ... > Hi - > First of all - thanks for the kind words, although I really didn't help set > up the website (do you mean e-groups or the All About Achalasia site). I > wrote one newsletter for that site and another is in the works. For that > site, you'd need to thank Donn Davy who did a tremendous job! > > Secondly, I live in Chicago, too! So - are we like the only two people in > our area with this dreaded condition? Do you have a gastroenterologist and > surgeon treating you? If not, I can highly recommend my team. > > Have not heard of any alternative or holistic treatments for the disease and > Europe seems to be doing the same things we are. Only new treatment option > I've heard of in a long time is the use of - believe it or not - Viagra and > it's too soon to tell if this is effective. (Although, I suppose, if you > can't have dinner you can always go right on to ....). > > Using good meetasearch engines like dogpile or ixquick and typing in > achalasia as the keyword brings up a wealth of research information. > > If you'd like to trade non-email ways of contact since we live in the same > neck of the woods, let me know. > Take care - > Carol > > Alternative Treatments > > > > Hi everyone. I'm new to this group, living in Chicago, and recently > > diagnosed with achalasia. I have a bunch of questions to ask while I > > am preparing myself for the inevitable(?) laparoscopic myotomy. > > > > Right now, I am curious as to the existance of alternate or > > experimental treatments for the disorder. > > > > Is there a resource where such information exists? (How do they > > treat achalasia in Europe or in other parts of the world?) > > > > Are there any new treatments on the horizon that could be available > > in the next 5 years? > > > > Is anyone working on this in the scientific community, especially at > > the " cellular level " ? What does the world of " alternative " > > or " holistic " medicine have to say about achalasia? > > > > Specific answers or ideas as to " where to look " would be > > enlightening ... > > > > Swack > > > > P.S. Special thanks to Carol Haggas for informative messages and for > > helping to set up the achalasia web site! > > > > > > > > > > > > > > > > > > > ____________NetZero Free Internet Access and Email_________ > Download Now http://www.netzero.net/download/index.html > Request a CDROM 1-800-333-3633 > ___________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2000 Report Share Posted August 28, 2000 Hi again! The physicians who treated my achalasia are out in the western suburbs of Chicago. My gastroenterologist is Dr. Hoscheit, who has offices in 4 locations: Glen Ellyn, Naperville, Bloomingdale and Geneva and affiliations with Central DuPage, and Delnor Community Hospitals. He referred me to Dr. Altimari, the surgeon who performed my laparoscopic myotomy at Central DuPage Hospital in Winfield. I can't say enough good things about either doctor and feel very fortunate to have found great people to help me. You're fortunate to have found a doctor with so much experience. I read your note to in Canada and appreciated your suggestions to her about obtaining cola syrup. I've offered to send her some if she can't get it any other way. Have you tried the cola syrup yet for yourself? I feel like I'm the only one who has used it and so don't know if it's a fluke that it works for me, or that I'm on to something that could really help all our fellow achalasiacs. I've recommended it to a few of the e-groups folks but have not heard feedback. Take care - Carol Alternative Treatments > > > > > > > Hi everyone. I'm new to this group, living in Chicago, and > recently > > > diagnosed with achalasia. I have a bunch of questions to ask > while I > > > am preparing myself for the inevitable(?) laparoscopic myotomy. > > > > > > Right now, I am curious as to the existance of alternate or > > > experimental treatments for the disorder. > > > > > > Is there a resource where such information exists? (How do they > > > treat achalasia in Europe or in other parts of the world?) > > > > > > Are there any new treatments on the horizon that could be > available > > > in the next 5 years? > > > > > > Is anyone working on this in the scientific community, especially > at > > > the " cellular level " ? What does the world of " alternative " > > > or " holistic " medicine have to say about achalasia? > > > > > > Specific answers or ideas as to " where to look " would be > > > enlightening ... > > > > > > Swack > > > > > > P.S. Special thanks to Carol Haggas for informative messages and > for > > > helping to set up the achalasia web site! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________NetZero Free Internet Access and Email_________ > > Download Now http://www.netzero.net/download/index.html > > Request a CDROM 1-800-333-3633 > > ___________________________________________________________ > > > > > > > _______________________________________________ Why pay for something you could get for free? NetZero provides FREE Internet Access and Email http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2000 Report Share Posted August 29, 2000 Hi Carol, I tried the cola syrup and I couldn't tell any effect. I carried it around with me for one bottle-full and drank it whenever I had chest pains or food stuck but no dice. I find drinking lots of water at a time helps some with the food sticking but I haven't found anything that helps with the chest pains. Glad it works for you. I may have give it another try! > > > Hi - > > > First of all - thanks for the kind words, although I really didn't > > help set > > > up the website (do you mean e-groups or the All About Achalasia > > site). I > > > wrote one newsletter for that site and another is in the works. > > For that > > > site, you'd need to thank Donn Davy who did a tremendous job! > > > > > > Secondly, I live in Chicago, too! So - are we like the only two > > people in > > > our area with this dreaded condition? Do you have a > > gastroenterologist and > > > surgeon treating you? If not, I can highly recommend my team. > > > > > > Have not heard of any alternative or holistic treatments for the > > disease and > > > Europe seems to be doing the same things we are. Only new > > treatment option > > > I've heard of in a long time is the use of - believe it or not - > > Viagra and > > > it's too soon to tell if this is effective. (Although, I suppose, > > if you > > > can't have dinner you can always go right on to ....). > > > > > > Using good meetasearch engines like dogpile or ixquick and typing in > > > achalasia as the keyword brings up a wealth of research information. > > > > > > If you'd like to trade non-email ways of contact since we live in > > the same > > > neck of the woods, let me know. > > > Take care - > > > Carol > > > > > > Alternative Treatments > > > > > > > > > > Hi everyone. I'm new to this group, living in Chicago, and > > recently > > > > diagnosed with achalasia. I have a bunch of questions to ask > > while I > > > > am preparing myself for the inevitable(?) laparoscopic myotomy. > > > > > > > > Right now, I am curious as to the existance of alternate or > > > > experimental treatments for the disorder. > > > > > > > > Is there a resource where such information exists? (How do they > > > > treat achalasia in Europe or in other parts of the world?) > > > > > > > > Are there any new treatments on the horizon that could be > > available > > > > in the next 5 years? > > > > > > > > Is anyone working on this in the scientific community, especially > > at > > > > the " cellular level " ? What does the world of " alternative " > > > > or " holistic " medicine have to say about achalasia? > > > > > > > > Specific answers or ideas as to " where to look " would be > > > > enlightening ... > > > > > > > > Swack > > > > > > > > P.S. Special thanks to Carol Haggas for informative messages and > > for > > > > helping to set up the achalasia web site! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________NetZero Free Internet Access and Email_________ > > > Download Now http://www.netzero.net/download/index.html > > > Request a CDROM 1-800-333-3633 > > > ___________________________________________________________ > > > > > > > > > > > > > > > > _______________________________________________ > Why pay for something you could get for free? > NetZero provides FREE Internet Access and Email > http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2000 Report Share Posted August 30, 2000 Hi, - Sorry the cola syrup didn't do the trick for you. As I said, my doctors all were skeptical as to why it would work for me in the first place! Oh well, nothing ventured, nothing gained. As for your chest pains, have you asked your doctor about Levsin? This is what I use and it works fairly quickly. I've also heard that some folks have good results with Procardia. Good luck and take care! Carol Alternative Treatments > > > > > > > > > > > > > Hi everyone. I'm new to this group, living in Chicago, and > > > recently > > > > > diagnosed with achalasia. I have a bunch of questions to ask > > > while I > > > > > am preparing myself for the inevitable(?) laparoscopic > myotomy. > > > > > > > > > > Right now, I am curious as to the existance of alternate or > > > > > experimental treatments for the disorder. > > > > > > > > > > Is there a resource where such information exists? (How do > they > > > > > treat achalasia in Europe or in other parts of the world?) > > > > > > > > > > Are there any new treatments on the horizon that could be > > > available > > > > > in the next 5 years? > > > > > > > > > > Is anyone working on this in the scientific community, > especially > > > at > > > > > the " cellular level " ? What does the world of " alternative " > > > > > or " holistic " medicine have to say about achalasia? > > > > > > > > > > Specific answers or ideas as to " where to look " would be > > > > > enlightening ... > > > > > > > > > > Swack > > > > > > > > > > P.S. Special thanks to Carol Haggas for informative messages > and > > > for > > > > > helping to set up the achalasia web site! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________NetZero Free Internet Access and Email_________ > > > > Download Now http://www.netzero.net/download/index.html > > > > Request a CDROM 1-800-333-3633 > > > > ___________________________________________________________ > > > > > > > > > > > > > > > > > > > > > > > > > _______________________________________________ > > Why pay for something you could get for free? > > NetZero provides FREE Internet Access and Email > > http://www.netzero.net/download/index.html > > > > > > _______________________________________________ Why pay for something you could get for free? NetZero provides FREE Internet Access and Email http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2000 Report Share Posted August 31, 2000 I'm going to ask my doctor about Levsin or Procardia - some here on the group have said these work for chest pain as you indicated. I had terrible chest pain practically daily (or multiple times some days) for several years and when my swallowing difficulty started the chest pains almost went away. Now I only get it once in a while - of course I'm not sure I like the trade off. My doctor did not recommend anything about the pains but I suppose now that I know I can ask. > > > > > Hi - > > > > > First of all - thanks for the kind words, although I really > > didn't > > > > help set > > > > > up the website (do you mean e-groups or the All About Achalasia > > > > site). I > > > > > wrote one newsletter for that site and another is in the works. > > > > For that > > > > > site, you'd need to thank Donn Davy who did a tremendous job! > > > > > > > > > > Secondly, I live in Chicago, too! So - are we like the only two > > > > people in > > > > > our area with this dreaded condition? Do you have a > > > > gastroenterologist and > > > > > surgeon treating you? If not, I can highly recommend my team. > > > > > > > > > > Have not heard of any alternative or holistic treatments for the > > > > disease and > > > > > Europe seems to be doing the same things we are. Only new > > > > treatment option > > > > > I've heard of in a long time is the use of - believe it or not - > > > > Viagra and > > > > > it's too soon to tell if this is effective. (Although, I > > suppose, > > > > if you > > > > > can't have dinner you can always go right on to ....). > > > > > > > > > > Using good meetasearch engines like dogpile or ixquick and > > typing in > > > > > achalasia as the keyword brings up a wealth of research > > information. > > > > > > > > > > If you'd like to trade non-email ways of contact since we live > > in > > > > the same > > > > > neck of the woods, let me know. > > > > > Take care - > > > > > Carol > > > > > > > > > > Alternative Treatments > > > > > > > > > > > > > > > > Hi everyone. I'm new to this group, living in Chicago, and > > > > recently > > > > > > diagnosed with achalasia. I have a bunch of questions to ask > > > > while I > > > > > > am preparing myself for the inevitable(?) laparoscopic > > myotomy. > > > > > > > > > > > > Right now, I am curious as to the existance of alternate or > > > > > > experimental treatments for the disorder. > > > > > > > > > > > > Is there a resource where such information exists? (How do > > they > > > > > > treat achalasia in Europe or in other parts of the world?) > > > > > > > > > > > > Are there any new treatments on the horizon that could be > > > > available > > > > > > in the next 5 years? > > > > > > > > > > > > Is anyone working on this in the scientific community, > > especially > > > > at > > > > > > the " cellular level " ? What does the world of " alternative " > > > > > > or " holistic " medicine have to say about achalasia? > > > > > > > > > > > > Specific answers or ideas as to " where to look " would be > > > > > > enlightening ... > > > > > > > > > > > > Swack > > > > > > > > > > > > P.S. Special thanks to Carol Haggas for informative messages > > and > > > > for > > > > > > helping to set up the achalasia web site! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________NetZero Free Internet Access and Email_________ > > > > > Download Now http://www.netzero.net/download/index.html > > > > > Request a CDROM 1-800-333-3633 > > > > > ___________________________________________________________ > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _______________________________________________ > > > Why pay for something you could get for free? > > > NetZero provides FREE Internet Access and Email > > > http://www.netzero.net/download/index.html > > > > > > > > > > > > > > _______________________________________________ > Why pay for something you could get for free? > NetZero provides FREE Internet Access and Email > http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 >From: jpollard12@... >Date: Tue, 30 Oct 2001 06:32:24 -0600 ><bobhurt@...> >X-Mailer: Miva v3.9201 >Subject: re: alternative treatments > >Name: Pollard >Email: jpollard12@... >Comments: Dear Mr. Hurt: > >I am looking for information or products that are alternative treatments >for Linitus Plastica, a severe type of stomach cancer. > >Any information you have would be highly appreciated. > >Sincerely, > Pollard > >This message was sent to you from: > >152.163.201.182 > >Mozilla/4.0 (compatible; MSIE 4.01; AOL 4.0; Windows 95) >Tue, Oct30, 2001 >6:32 CDT > ****** bobhurt@... ****** Bob Hurt, Clearwater, FL 33766 ***** http://www.bobhurt.com ***** This message and attached files are confidential and intended solely for those to whom they are addressed. Notify the sender if you receive this in error. ****************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Sandy, Regarding the silver stuff... that's exactly why I asked; I'd never heard of it either. Then last night I got to *really* looking at it -- there's supposedly some whole kit of equipment that they sell to build this machine (for whatever reason?) to dissolve silver into distilled water... I don't know if you're then supposed to drink it or what. But basically, when I got *that* far, I said " okay, this has got to be BS " . So I'm assuming it's not worth worrying about... but... my concern is that *maybe* there just might be some merit to it and I've just never heard of it. So I thought it wouldn't hurt to ask... then if anyone else says that they do know about it and it's bogus, I can dismiss all their claims (of something which sounds pretty fishy to begin with). -Seb. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Sandy, Regarding the silver stuff... that's exactly why I asked; I'd never heard of it either. Then last night I got to *really* looking at it -- there's supposedly some whole kit of equipment that they sell to build this machine (for whatever reason?) to dissolve silver into distilled water... I don't know if you're then supposed to drink it or what. But basically, when I got *that* far, I said " okay, this has got to be BS " . So I'm assuming it's not worth worrying about... but... my concern is that *maybe* there just might be some merit to it and I've just never heard of it. So I thought it wouldn't hurt to ask... then if anyone else says that they do know about it and it's bogus, I can dismiss all their claims (of something which sounds pretty fishy to begin with). -Seb. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Hi! I'm interested to know how long you've had the cleanings? I'm trying to avoid surgery for as long as possible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Hello again , I know you want to postpone surgery, but the sooner you get this monster removed, the less damage it does. Cleanings depend on the type of procedure you have done. My husband had a canal wall down radical mastoidectomy and goes in for cleanings every 3 months. Don't put it off. The longer you put it off the more damage it will do. In my hubbys right ear, we caught it right away, and since the 2nd surgery on that ear (cwd is in the left ear) in January, it has been like there never was c-toma in the right ear. Only because we caught it so soon. Michele cameragirl8 wrote: Hi!I'm interested to know how long you've had the cleanings? I'm trying to avoid surgery for as long as possible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2002 Report Share Posted August 3, 2002 The periodic cleanings remove debris and discharged materials from the outer ear but DO NOT effect the cholesteatoma which MUST be surgically removed. Hi! > > I'm interested to know how long you've had the cleanings? I'm trying to > avoid surgery for as long as possible. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 Hi Michele- Thanks for the advice. I'm just concerned about the surgery! : ( __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2002 Report Share Posted December 26, 2002 Hi didi, Good luck on your research. Im sure alot of people in this group would be very happy to find an alternative to surgery. Ive done hours of reading on c-tomas, and so far,all I have ever seen on treatment for this has been a surgical procedure. Some have had only 1 surgery with no recurrence, others have had more. I think each individual is different, depending on the amount of damage that has taken place. Please keep the group posted on your findings..An alternative would be nice...thanks ~*~Renonda~*~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2002 Report Share Posted December 26, 2002 Hi Didi, Good luck with your research. I for one would be very interested in whatever you find out regarding alternative things to help. My husband has fairly bad scoliosis, as well as a history of c-toma, and I have often wondered if there is a connection between these problems in his particular situation. He has quite a big kink in the back of his neck... and our necks are close to ears. I'm thinking in terms of energy flow mainly, like in Traditional Chinese Medicine charts. I'm also wondering about allergies/sinus infections... If the eustachian tubes get blocked because of these things, and blocked tubes could eventually lead to c-toma, then getting rid of the allergy antagonists would seem like a really good idea. There are so many chemicals in most homes which I for one have some sort of allergic reaction to. Formaldehyde is one of the worst for me, but there are highly perfumed products, airborne dust, and so on, as well. My allergy reaction is usually a sinus thing, and then a problem with my ears. I'm wondering if there are other people on this group who have noticed anything like this? What if the allergens could be removed? It would be so wonderful if ANY of the 'root causes' for c-toma could be found and gotten rid of! Best wishes, jani alternative treatments Hi , It sounds like the way c-tomas are treated doesn't do anything to get to the root cause of them and therefore they come back even after they are removed.This is so new to me. my son just had his first CT scan the other day. we havent gotten the results yet, so i really dont know what's in store for us, but does anyone know what percentage of these don't come back after surgery? is this group just a concentration of people who have had more serious problems with cholesteatoma or is this bascially the norm? i am defintiely seeking out alternative treatment. i belive that if something can make it grow, then there must be something that can make it shrink.i've heard of very effective treatment of tumors using high dosages of enzymes. this was in cancer patients , but i have a feeling it might work with benign tumors as well. the enzymes basically eat up any protenaceous substances which these growths are made of. i'm sorry i dont have enough information about this yet, but i will be looking into this if anyone else is interested. also, as soon as i find out the results, i will be working with my homeopath, provided we dont need surgery immediaitely.he will need a few months to see any effects of a remedy.so, i'm really praying that we have a few months to get to the root cause. didi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2002 Report Share Posted December 26, 2002 does anyone know what percentage of these don't come back after surgery? Hi Didi The statistics that I've found vary wildly but they all recognize that there's a big difference depending on the kind of surgery you have. These are the "Canal Wall Up" and the "Canal Wall Down" that everyone mentions. The first leaves the ear intact with the aim of hearing reconstruction and the second leaves an open cavity ear which needs to be cleaned out on a regular basis. Although there now seems to be some gradation between the two types of operation, these figures may reflect an average: The incidence of recurrent cholesteatoma was noted in 41% of the patients having intact canal wall mastoidectomy compared with 12% recidivism in those having a canal wall down procedure So I guess this group does mainly represent the people who are 'first-time diagnosed' and the rest who are 'long-term complications'. An unfortunate mix perhaps but if you've had the disease once, without further recurrence then you may be interested in joining a c-toma support group. One of things about c-toma is that it isn't exactly a living, growing part of your body in the way that a true tumour is. It's actually an accumulation of dead skin which does damage in two ways. First, it just gets bigger and spreads around which puts pressure on other structures in the ear. Second, inflammation of the c-toma produces enzymes which activate bone-destructive cells.There are thought to be various causes to the development of c-toma, one is the poor Eustachian Tube and retraction pocket idea - but also that it can be brought on be a blow to the head, previous surgery and even ventilation tubes get some of the blame. Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2002 Report Share Posted December 26, 2002 hi jani, thats exactly what i had in mind. if my sons ears get fluidy because of allergies, then it seems pretty simple to try to find out what his food and/or environmental allergies are and start to eliminate them. i personally eat no wheat, dairy, sugar ot any processed foods. my diet is primarily raw/live foods and i know for myself my health improved enormously as i began to eat this way. i also have a healthy cookie business. if anyone wants to check out my website it's www.bakingforhealth.com , but as far as the scoliosis goes, you might try working with an osteopath. osteopathy is predicated on the belief that function will follow form, so that when the bones and soft tissue are correctly aligned and in balance, the body will function optimally. alot of people with poor eustacian tubes can also benefit from certain cranial adjustments. i think its worth looking into and it certainly doesnt hurt. didi alternative treatments Hi , It sounds like the way c-tomas are treated doesn't do anything to get to the root cause of them and therefore they come back even after they are removed.This is so new to me. my son just had his first CT scan the other day. we havent gotten the results yet, so i really dont know what's in store for us, but does anyone know what percentage of these don't come back after surgery? is this group just a concentration of people who have had more serious problems with cholesteatoma or is this bascially the norm? i am defintiely seeking out alternative treatment. i belive that if something can make it grow, then there must be something that can make it shrink.i've heard of very effective treatment of tumors using high dosages of enzymes. this was in cancer patients , but i have a feeling it might work with benign tumors as well. the enzymes basically eat up any protenaceous substances which these growths are made of. i'm sorry i dont have enough information about this yet, but i will be looking into this if anyone else is interested. also, as soon as i find out the results, i will be working with my homeopath, provided we dont need surgery immediaitely.he will need a few months to see any effects of a remedy.so, i'm really praying that we have a few months to get to the root cause. didi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2002 Report Share Posted December 26, 2002 renonnda, i did come across a link while searching for c-tomas on the web. some guy had written about how he was working with a homeopath in South Africa of all places, for his c-toma. he gave an email if people wanted to get in touch with him, i tried to email him, but it was a post from a few years ago and it wasnt working anymore. i'm still searching and i'm glad people are open to this topic. sometimes a combination of alternative and more conventional therapies works best as well. it doesnt have to be all or nothing. didi Re: alternative treatments Hi didi,Good luck on your research. Im sure alot of people in this group would be very happy to find an alternative to surgery. Ive done hours of reading on c-tomas, and so far,all I have ever seen on treatment for this has been a surgical procedure. Some have had only 1 surgery with no recurrence, others have had more. I think each individual is different, depending on the amount of damage that has taken place. Please keep the group posted on your findings..An alternative would be nice...thanks~*~Renonda~*~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2002 Report Share Posted December 26, 2002 thanks phil, that answers alot of questions. so the surgery which is leasst invasive i'm asuming is the canal wall up, and there is more recurrence with this procedure? did i get that right? in the canal wall down, do you lose all your hearing? how do they clean it out regularly? didi Re: alternative treatments does anyone know what percentage of these don't come back after surgery? Hi Didi The statistics that I've found vary wildly but they all recognize that there's a big difference depending on the kind of surgery you have. These are the "Canal Wall Up" and the "Canal Wall Down" that everyone mentions. The first leaves the ear intact with the aim of hearing reconstruction and the second leaves an open cavity ear which needs to be cleaned out on a regular basis. Although there now seems to be some gradation between the two types of operation, these figures may reflect an average: The incidence of recurrent cholesteatoma was noted in 41% of the patients having intact canal wall mastoidectomy compared with 12% recidivism in those having a canal wall down procedure So I guess this group does mainly represent the people who are 'first-time diagnosed' and the rest who are 'long-term complications'. An unfortunate mix perhaps but if you've had the disease once, without further recurrence then you may be interested in joining a c-toma support group. One of things about c-toma is that it isn't exactly a living, growing part of your body in the way that a true tumour is. It's actually an accumulation of dead skin which does damage in two ways. First, it just gets bigger and spreads around which puts pressure on other structures in the ear. Second, inflammation of the c-toma produces enzymes which activate bone-destructive cells.There are thought to be various causes to the development of c-toma, one is the poor Eustachian Tube and retraction pocket idea - but also that it can be brought on be a blow to the head, previous surgery and even ventilation tubes get some of the blame. Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2002 Report Share Posted December 26, 2002 that answers alot of questions. so the surgery which is leasst invasive i'm asuming is the canal wall up, and there is more recurrence with this procedure? did i get that right? in the canal wall down, do you lose all your hearing? how do they clean it out regularly? Hi Didi Yes - the CWU people often have a lot more surgeries - but I'm sure they'd argue that these are just as invasive. Both kinds of surgery drill in through the mastoid but probably the CWD leaves a bit more damage in there, taking down part of the ear canal and sometimes sacrificing the ear bones and eardrum (if there's anything left of them). Losing the ear bones is the definitive cause of the deafness. Once there was only CWD but now it's usually the more advanced cases that get it. Things are changing! Lynn and Riley both had CWDs but also have reconstruction planned if the c-toma doesn't recur. Me too, and that's in an ear with no bones, eardrum or even middle ear space left - the otologist intends to rebuild the ear from scratch - even to reconstruct an ear canal. I was diagnosed with middle ear c-toma and canal c-toma occuring simultaneously - the canal stuff came straight back (in both ears) but the middle ear stuff stayed away. Cleaning means dry suctioning all the debris out of the ear. It' gets done anything from once a month to once every year or more. Though I've only been having the monthly doses because the ongoing disease needed to treated. Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 the neck stiffness ache is seen in 91% of lyme patients according to one doctors survey of his patients. this stiff neck is obviously not muscular, but an inflamation of the lining of something! up there. i have had stiff neck for almost a year as main obvious symptom. it is hilarious to have others comment from there experience of stiff necks -which have all been muscular. there is a very obvious difference in this kind of stiff neck. crunchy cracking noises no change with different movements over time, and it gets worse when you do something wrong like eating certain foods. dairy and sugar totally zonk me the next day. one may think that it may be virtuous to avoid these things, but my change in habits is not out of abstract virtue, but " instant karma " . -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Dear Eva, Welcome! I am very sorry that you have Lyme. I think, however, you are extremely fortunate to have found such an open minded doctor. I don't know much about the specific herbal treatment you will be receiving, but I have been doing Chinese Herbs for almost nine years with incredible results. The herbs I take are food based herbs which I I order through a toll free number and it is sent to me by UPS from a California based company called Sunrider International. Since they are food based herbs, I don't have to worry about overdosing. It seems that that ancient Chinese believed that the body can heal itself if fed and nourished properly with concentrated herbal food. In that way we are building up our immune system in order to fight off any disease, instead of killing off Lyme spirochetes along with our immune system and hurting other organs in our body as well with strong antibiotics. My whole family is on it because we all had third stage Lyme disease (were diagnosed in 1989.) I have helped many Lymies with these herbs, as well as with CFS and Fibromialgia and know of many others who have been helped to regain their health from Diabetes, Hepatitis C, MS and Cancer. I love these products so much that I have been an herbal food advisor for Sunrider for seven years, and have attended numerous seminars where others have shared their miraculous success stories. I am always interested in hearing about alternative treatments and sharing my knowledge, because antibiotics only helped my family and I for brief periods of time, and the symptoms always came back. It is good not to have to deal with Lyme doctors I.V. treatments and hospital stays and to have the tools to stay strong and healthy. All my best, Sue Rauch ville, New Jersey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 HI Sue i was just reading your post about taking herbal treatments for lyme disease and was wondering if you would be willing to share what herbs seem to work best for you and your family. Thank you -Val Quote Link to comment Share on other sites More sharing options...
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