Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 I would appreciate the link, , when you get a chance. Cheers, *S* > > What do you think of this? Is he a crazy, greedy control freak or > an > > Aspie Genius? I recieved this tonite from an e-pal in another part > > of the country: > > > > *S* > > Well I just recieved from the LLMD's office a packet of papers to > > read through. Bascially outlining the Policy Services & Fees and a > > Questionnaire. This is the Doctor's office who behaved poorly on > the > > phone w/ me. Anyhow I have written out what they sent me. > Thought > > you might find it interesting. This Doctor in Nevada City holds > the > > position of " clinical Consultant " at Igenex. > > > > So he is between Palo Alto And Nevada City. Outside of the Nevada > > City offices there is no phone and no " real " office space, but > > rented rooms for only 2 days per month. So, if you live near Palo > > Alto, you must go to Nevada City at least once, and maybe once > every > > three months also. > > > > > > > > It allows 1 free phone consultation w/in first month of visit. The > > intial visit is $350.00 !! > > > > Follow up visits are $190.00 maybe required if medication is > changed. > > > > Phone consultations are available after in person visit for $75/15 > > minutes. !! > > > > Antibiotic Injections: > > Bicillin shot $40 > > Rocephin shot $ 125 > > > > Prescription Refills: > > > > 72 hours in advance > > > > New Patients: > > must have follow up visit w/in 1 month of 1st visit. > > first weeks are the most difficult and unsettling, many symptoms > > change rapidly, neccessatating exam and explaination. > > > > Maintaining Current Patient Status: > > > > By maintaining a 3 months interval time between visits. For > Proper > > care, 1 visit every 3 months must be seen by Dr. > > After 3 months patient will become Inactive. > > New Patient fee will be applied along w/ in depth reassesment of > > your status. > > > > Cancellation: > > 48hrs or $50 fee billed. > > > > Primary Care Doctor Requirement > > > > Duration of the disease Battle: > > > > There is no Rigid Time frame, in general the more time has elapsed > > the longer the patient will require treatment. > > > > > > > > > > > > > > > > Types of Lyme Antibiotic treatment : > > > > Oral Meds, > > Intramuscular shots, > > intravenous injections > > > > Mid Lines > > Picc Lines > > Medi ports & Hickman Catheters are kinds of indwelling catheters. > > There advantages & disadvantages > > > > What we expect from Patients: > > > > Muscle toning exercise at least 2 x' per week, 20 minutes per day. > > Inportant component in combatting Lyme disease. Even if pain > prevent > > a rigorous workout must do something. However Aerobic exercise is > > potentially dangerous for Lyme patients. Intially one day of rest > > between workouts is mandatory. > > > > No smoking, must quit. > > > > some nutritional supplements are an integral part of the > treatment. > > and therapies such as acidopholous are essential. Must protect > > oneself from harmfull effects of long term antibiotics. > > > > Patients must not addres Doctor about payment arrangements. or may > > be removed from the pratice. Only through receptionist. Must pay > in > > Full before leaving office. > > > > No Alcohol. Detrimental and interacts w/ meds. > > > > Avoid Lyme vaccine unless you are absolutely sure you do not have > > Lyme. > > > > The Doctor is out of town frequently. Hours are irregular. Monthly > > calendar will be made available to current patients 1 or 2 months > in > > advance. > > > > The Reception is only staffed part time. > > > > Threats or aggessive behaviour or other forms of Lyme rage. > > > > Will not be tolerated, will recieve written warning, subsequent > > offenses will result in removal from the practice. > > > > Antibiotic Doses & side effects > > > > Several side effects can lead to possible complications. These > > include, but not limited to, allergic reactions, stomach, > intestinal > > disorders, antibiotic resistant bugs which can turn mild > infections > > into catastrphic events, nausea, rashes, visual or hearing loss, > > drug interactions, liver, kidney damage, nerve damage, immune > system > > disfunction and yeast infections. > > You are assuming the risk if you accept treatment. > > Several techniques will be used to avoid these complications, but > > sometimes they are unavoidable. > > > > > > There is also a page that goes on about: > > > > Political Arena > > > > Lyme disease and associated diseases are complex & puzzling > problem > > that scientists, practioners, and patients are only beginning to > > understand. > > > > Tremendous controversy surrounds the diagnosis and treatment of > > chronic Lyme. > > > > Disagreement w/ the of long term antibiotic treatment. The > > scientific Media lends little support, very few studies > illustrating > > the benefits of long term use. > > > > Many doctors have unwillingness or Lack of knowledge to pursue > Lyme > > as the primary cause of Patients symptoms. As a result many go > > undiagnosed or misdiagnosed. > > > > It is also true that the conditions, symptoms exist alone without > > any relation to Lyme disease, Babesia, Erlichiosis or Bartonella. > > In theses case a Rhuematologist or nuerologist many be suited to > > mange patients care. > > > > We will inform you when we believe that your symptoms are not > Lyme > > related. A porporton of Patients who come to our practice indeed > do > > not have Lyme. > > > > Oh they also wrote that it is not just getting a diagnosis of > wether > > or not u have Lyme disease but includes an undrstanding of the > > current state and severity of the disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 I think the typos may be my friends' re-typing the whole thing in an email to me. Sorry bout that. *S* > > What do you think of this? Is he a crazy, greedy control freak or > an > > Aspie Genius? I recieved this tonite from an e-pal in another part > > of the country: > > > > *S* > > Well I just recieved from the LLMD's office a packet of papers to > > read through. Bascially outlining the Policy Services & Fees and a > > Questionnaire. This is the Doctor's office who behaved poorly on > the > > phone w/ me. Anyhow I have written out what they sent me. > Thought > > you might find it interesting. This Doctor in Nevada City holds > the > > position of " clinical Consultant " at Igenex. > > > > So he is between Palo Alto And Nevada City. Outside of the Nevada > > City offices there is no phone and no " real " office space, but > > rented rooms for only 2 days per month. So, if you live near Palo > > Alto, you must go to Nevada City at least once, and maybe once > every > > three months also. > > > > > > > > It allows 1 free phone consultation w/in first month of visit. The > > intial visit is $350.00 !! > > > > Follow up visits are $190.00 maybe required if medication is > changed. > > > > Phone consultations are available after in person visit for $75/15 > > minutes. !! > > > > Antibiotic Injections: > > Bicillin shot $40 > > Rocephin shot $ 125 > > > > Prescription Refills: > > > > 72 hours in advance > > > > New Patients: > > must have follow up visit w/in 1 month of 1st visit. > > first weeks are the most difficult and unsettling, many symptoms > > change rapidly, neccessatating exam and explaination. > > > > Maintaining Current Patient Status: > > > > By maintaining a 3 months interval time between visits. For > Proper > > care, 1 visit every 3 months must be seen by Dr. > > After 3 months patient will become Inactive. > > New Patient fee will be applied along w/ in depth reassesment of > > your status. > > > > Cancellation: > > 48hrs or $50 fee billed. > > > > Primary Care Doctor Requirement > > > > Duration of the disease Battle: > > > > There is no Rigid Time frame, in general the more time has elapsed > > the longer the patient will require treatment. > > > > > > > > > > > > > > > > Types of Lyme Antibiotic treatment : > > > > Oral Meds, > > Intramuscular shots, > > intravenous injections > > > > Mid Lines > > Picc Lines > > Medi ports & Hickman Catheters are kinds of indwelling catheters. > > There advantages & disadvantages > > > > What we expect from Patients: > > > > Muscle toning exercise at least 2 x' per week, 20 minutes per day. > > Inportant component in combatting Lyme disease. Even if pain > prevent > > a rigorous workout must do something. However Aerobic exercise is > > potentially dangerous for Lyme patients. Intially one day of rest > > between workouts is mandatory. > > > > No smoking, must quit. > > > > some nutritional supplements are an integral part of the > treatment. > > and therapies such as acidopholous are essential. Must protect > > oneself from harmfull effects of long term antibiotics. > > > > Patients must not addres Doctor about payment arrangements. or may > > be removed from the pratice. Only through receptionist. Must pay > in > > Full before leaving office. > > > > No Alcohol. Detrimental and interacts w/ meds. > > > > Avoid Lyme vaccine unless you are absolutely sure you do not have > > Lyme. > > > > The Doctor is out of town frequently. Hours are irregular. Monthly > > calendar will be made available to current patients 1 or 2 months > in > > advance. > > > > The Reception is only staffed part time. > > > > Threats or aggessive behaviour or other forms of Lyme rage. > > > > Will not be tolerated, will recieve written warning, subsequent > > offenses will result in removal from the practice. > > > > Antibiotic Doses & side effects > > > > Several side effects can lead to possible complications. These > > include, but not limited to, allergic reactions, stomach, > intestinal > > disorders, antibiotic resistant bugs which can turn mild > infections > > into catastrphic events, nausea, rashes, visual or hearing loss, > > drug interactions, liver, kidney damage, nerve damage, immune > system > > disfunction and yeast infections. > > You are assuming the risk if you accept treatment. > > Several techniques will be used to avoid these complications, but > > sometimes they are unavoidable. > > > > > > There is also a page that goes on about: > > > > Political Arena > > > > Lyme disease and associated diseases are complex & puzzling > problem > > that scientists, practioners, and patients are only beginning to > > understand. > > > > Tremendous controversy surrounds the diagnosis and treatment of > > chronic Lyme. > > > > Disagreement w/ the of long term antibiotic treatment. The > > scientific Media lends little support, very few studies > illustrating > > the benefits of long term use. > > > > Many doctors have unwillingness or Lack of knowledge to pursue > Lyme > > as the primary cause of Patients symptoms. As a result many go > > undiagnosed or misdiagnosed. > > > > It is also true that the conditions, symptoms exist alone without > > any relation to Lyme disease, Babesia, Erlichiosis or Bartonella. > > In theses case a Rhuematologist or nuerologist many be suited to > > mange patients care. > > > > We will inform you when we believe that your symptoms are not > Lyme > > related. A porporton of Patients who come to our practice indeed > do > > not have Lyme. > > > > Oh they also wrote that it is not just getting a diagnosis of > wether > > or not u have Lyme disease but includes an undrstanding of the > > current state and severity of the disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Of course, I should have realized that. Well, then he gets a half more point. :-) penny > > > What do you think of this? Is he a crazy, greedy control freak > or > > an > > > Aspie Genius? I recieved this tonite from an e-pal in another > part > > > of the country: > > > > > > *S* > > > Well I just recieved from the LLMD's office a packet of papers > to > > > read through. Bascially outlining the Policy Services & Fees and > a > > > Questionnaire. This is the Doctor's office who behaved poorly on > > the > > > phone w/ me. Anyhow I have written out what they sent me. > > Thought > > > you might find it interesting. This Doctor in Nevada City holds > > the > > > position of " clinical Consultant " at Igenex. > > > > > > So he is between Palo Alto And Nevada City. Outside of the > Nevada > > > City offices there is no phone and no " real " office space, but > > > rented rooms for only 2 days per month. So, if you live near > Palo > > > Alto, you must go to Nevada City at least once, and maybe once > > every > > > three months also. > > > > > > > > > > > > It allows 1 free phone consultation w/in first month of visit. > The > > > intial visit is $350.00 !! > > > > > > Follow up visits are $190.00 maybe required if medication is > > changed. > > > > > > Phone consultations are available after in person visit for > $75/15 > > > minutes. !! > > > > > > Antibiotic Injections: > > > Bicillin shot $40 > > > Rocephin shot $ 125 > > > > > > Prescription Refills: > > > > > > 72 hours in advance > > > > > > New Patients: > > > must have follow up visit w/in 1 month of 1st visit. > > > first weeks are the most difficult and unsettling, many symptoms > > > change rapidly, neccessatating exam and explaination. > > > > > > Maintaining Current Patient Status: > > > > > > By maintaining a 3 months interval time between visits. For > > Proper > > > care, 1 visit every 3 months must be seen by Dr. > > > After 3 months patient will become Inactive. > > > New Patient fee will be applied along w/ in depth reassesment of > > > your status. > > > > > > Cancellation: > > > 48hrs or $50 fee billed. > > > > > > Primary Care Doctor Requirement > > > > > > Duration of the disease Battle: > > > > > > There is no Rigid Time frame, in general the more time has > elapsed > > > the longer the patient will require treatment. > > > > > > > > > > > > > > > > > > > > > > > > Types of Lyme Antibiotic treatment : > > > > > > Oral Meds, > > > Intramuscular shots, > > > intravenous injections > > > > > > Mid Lines > > > Picc Lines > > > Medi ports & Hickman Catheters are kinds of indwelling catheters. > > > There advantages & disadvantages > > > > > > What we expect from Patients: > > > > > > Muscle toning exercise at least 2 x' per week, 20 minutes per > day. > > > Inportant component in combatting Lyme disease. Even if pain > > prevent > > > a rigorous workout must do something. However Aerobic exercise > is > > > potentially dangerous for Lyme patients. Intially one day of > rest > > > between workouts is mandatory. > > > > > > No smoking, must quit. > > > > > > some nutritional supplements are an integral part of the > > treatment. > > > and therapies such as acidopholous are essential. Must protect > > > oneself from harmfull effects of long term antibiotics. > > > > > > Patients must not addres Doctor about payment arrangements. or > may > > > be removed from the pratice. Only through receptionist. Must > pay > > in > > > Full before leaving office. > > > > > > No Alcohol. Detrimental and interacts w/ meds. > > > > > > Avoid Lyme vaccine unless you are absolutely sure you do not > have > > > Lyme. > > > > > > The Doctor is out of town frequently. Hours are irregular. > Monthly > > > calendar will be made available to current patients 1 or 2 > months > > in > > > advance. > > > > > > The Reception is only staffed part time. > > > > > > Threats or aggessive behaviour or other forms of Lyme rage. > > > > > > Will not be tolerated, will recieve written warning, subsequent > > > offenses will result in removal from the practice. > > > > > > Antibiotic Doses & side effects > > > > > > Several side effects can lead to possible complications. These > > > include, but not limited to, allergic reactions, stomach, > > intestinal > > > disorders, antibiotic resistant bugs which can turn mild > > infections > > > into catastrphic events, nausea, rashes, visual or hearing loss, > > > drug interactions, liver, kidney damage, nerve damage, immune > > system > > > disfunction and yeast infections. > > > You are assuming the risk if you accept treatment. > > > Several techniques will be used to avoid these complications, > but > > > sometimes they are unavoidable. > > > > > > > > > There is also a page that goes on about: > > > > > > Political Arena > > > > > > Lyme disease and associated diseases are complex & puzzling > > problem > > > that scientists, practioners, and patients are only beginning to > > > understand. > > > > > > Tremendous controversy surrounds the diagnosis and treatment of > > > chronic Lyme. > > > > > > Disagreement w/ the of long term antibiotic treatment. The > > > scientific Media lends little support, very few studies > > illustrating > > > the benefits of long term use. > > > > > > Many doctors have unwillingness or Lack of knowledge to pursue > > Lyme > > > as the primary cause of Patients symptoms. As a result many go > > > undiagnosed or misdiagnosed. > > > > > > It is also true that the conditions, symptoms exist alone > without > > > any relation to Lyme disease, Babesia, Erlichiosis or > Bartonella. > > > In theses case a Rhuematologist or nuerologist many be suited to > > > mange patients care. > > > > > > We will inform you when we believe that your symptoms are not > > Lyme > > > related. A porporton of Patients who come to our practice indeed > > do > > > not have Lyme. > > > > > > Oh they also wrote that it is not just getting a diagnosis of > > wether > > > or not u have Lyme disease but includes an undrstanding of the > > > current state and severity of the disease. 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Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 I couldn't have written it better myself./--- In infections , " penny " <pennyhoule@y...> wrote: > Well, there you go. has a video link. You can check the guy out > for yourself. Maybe your questions will be answered in the video. > > I'd still talk to patients though, find out who has really improved > and continues to improve, not just patients currently on the band > wagon. I've been to several great medical geniuses, who, as it turns > out, their genius was in making money. > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Well, HAD a video link. Regrettably, the California Channel website has deleted every hearing recorded prior to October of 2004. This is what we get for entrusting the video history of our state government to Comcast, a private cable company. No doubt one of Governor Ahnuld's innovations. So I get an 'F' for results but hopefully at least a 'C' for effort. I emailed the archivist on the California Channel requesting the program, and sent a post out on Lymenet asking if anyone had the good sense to click " save target as " and download the actual file when it was available. Hopefully someone will get back to me, and I'll be able to make it available. Those hearings werer a revelation to me, and have a broader value than providing an introduction to the doctor you're inquiring about. In the meantime, following Penny's advice is smart and you can do it easily on Lymenet by just posting your initial query from here - they'll recognize, as I did, who you're talking about. S. > > Well, there you go. has a video link. You can check the guy out > > for yourself. Maybe your questions will be answered in the video. > > > > I'd still talk to patients though, find out who has really improved > > and continues to improve, not just patients currently on the band > > wagon. I've been to several great medical geniuses, who, as it turns > > out, their genius was in making money. > > > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Thanks , I posted to Lymenet simultaneous with here. What website was the video on? I can look in the internet archives. What keywords would I look for ( I do not have this Dr's name, only my friend's story, so I don't recognize him at all ). *S* > > > Well, there you go. has a video link. You can check the guy > out > > > for yourself. Maybe your questions will be answered in the video. > > > > > > I'd still talk to patients though, find out who has really > improved > > > and continues to improve, not just patients currently on the > band > > > wagon. I've been to several great medical geniuses, who, as it > turns > > > out, their genius was in making money. > > > > > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Any chance you can find a cached copy through a google search? Lots of times I go to web sites that have been closed, but I click on the " cached " link, and voila, an old copy comes up. Handy little trick. Don't know if it works for video though. Probably not. penny > Well, HAD a video link. Regrettably, the California Channel > website has deleted every hearing recorded prior to October of 2004. > This is what we get for entrusting the video history of our state > government to Comcast, a private cable company. No doubt one of > Governor Ahnuld's innovations. > > So I get an 'F' for results but hopefully at least a 'C' for effort. > I emailed the archivist on the California Channel requesting the > program, and sent a post out on Lymenet asking if anyone had the > good sense to click " save target as " and download the actual file > when it was available. > > Hopefully someone will get back to me, and I'll be able to make it > available. Those hearings werer a revelation to me, and have a > broader value than providing an introduction to the doctor you're > inquiring about. > > In the meantime, following Penny's advice is smart and you can do it > easily on Lymenet by just posting your initial query from here - > they'll recognize, as I did, who you're talking about. > > S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 This is the Internet WayBack Machine: http://www.archive.org/web/web.php You can find a lot of things here, if you know what to ask for. That is why I am wondering what the web might have been. *S* > > Well, HAD a video link. Regrettably, the California Channel > > website has deleted every hearing recorded prior to October of > 2004. > > This is what we get for entrusting the video history of our state > > government to Comcast, a private cable company. No doubt one of > > Governor Ahnuld's innovations. > > > > So I get an 'F' for results but hopefully at least a 'C' for > effort. > > I emailed the archivist on the California Channel requesting the > > program, and sent a post out on Lymenet asking if anyone had the > > good sense to click " save target as " and download the actual file > > when it was available. > > > > Hopefully someone will get back to me, and I'll be able to make it > > available. Those hearings werer a revelation to me, and have a > > broader value than providing an introduction to the doctor you're > > inquiring about. > > > > In the meantime, following Penny's advice is smart and you can do > it > > easily on Lymenet by just posting your initial query from here - > > they'll recognize, as I did, who you're talking about. > > > > S. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 http://www.calchannel.com/february2004.htm That's the page indexing the February 04 videotaped hearings. The link to the media file for the Lyme hearings is: http://www.calchannel.com/MEDIA/0225E.ram Thanks for the tip about the Internet WayBack Machine, which I knew nothing about. > > > Well, HAD a video link. Regrettably, the California Channel > > > website has deleted every hearing recorded prior to October of > > 2004. > > > This is what we get for entrusting the video history of our > state > > > government to Comcast, a private cable company. No doubt one of > > > Governor Ahnuld's innovations. > > > > > > So I get an 'F' for results but hopefully at least a 'C' for > > effort. > > > I emailed the archivist on the California Channel requesting the > > > program, and sent a post out on Lymenet asking if anyone had the > > > good sense to click " save target as " and download the actual > file > > > when it was available. > > > > > > Hopefully someone will get back to me, and I'll be able to make > it > > > available. Those hearings werer a revelation to me, and have a > > > broader value than providing an introduction to the doctor > you're > > > inquiring about. > > > > > > In the meantime, following Penny's advice is smart and you can > do > > it > > > easily on Lymenet by just posting your initial query from here - > > > they'll recognize, as I did, who you're talking about. > > > > > > S. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2005 Report Share Posted December 19, 2005 WOW!!! This is soooooo neat Tom! I have a herpetic whitlow on my left hand which has plagued me since 1986...I got this virus in the lab from a pap smear ( I worked in pathology) aand I always have beleieved it triggered my MS o at least was one of the triggers.There is a suspicion among the med community thta herpes virus has got something to do wit hMS anyway. How "tragic" that we might really need to eat more brussels sprouts, broccoli and cabbage! hehee- my favourites! I LOVE THESE Nola [low dose naltrexone] off topic Here's a bizarre medical benefit you'll get if you eat lots of broccoli or Brussels sprouts and cabbage Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2005 Report Share Posted December 19, 2005 Hi Broc can also be of some help when having urologic probs. http://prostatitis.org/broccindex.html regs,tom --- tom bayuk <tbayuk@...> wrote: > Here's a bizarre medical benefit you'll get if you > eat lots of broccoli or Brussels sprouts and cabbage __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Thanks! My cards will be in the mail Tommorrow. Merry Christmas! Ya know I really am upset by the anti- war people. Our nation was attacked and everyone was gong ho about us going into Iraq. I know it's been along haul but from the very beginning we all knew it would be. I support the war and our soldiers. They deserve our love and respect. I always think if I was under such oppression wouldn't it be worth it all. Just an FYI of How I feel about the war and supporting our troops. Ann ( ) Off Topic This holiday season, I'd like to remind you of our American Military Heroes who are recuperating from their injuries. If you have extra holiday greeting cards, send one or two to those who have sacrificed and thank them for their service! A Recovering American Soldier c/o Walter Army Medical Center 6900 Georgia Avenue, NW Washington, DC 20307-5001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2006 Report Share Posted January 24, 2006 Wow, we were there too over winter break. My husband does some work for Surfline in Huntington Beach. Wish I knew you and Marcia were down there we would have asked to have coffee. Maybe next time around. Aletha [low dose naltrexone] off topic >I am in Huntington Beach, CA. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 , a very similar thing happens to me when I either fall or the massage therapist pushes on my spine or neck the wrong way.(I have now made him aware not to do this) What happens is that my spine gets thrown out of alignment and it leans on a nerve or a lesion and I cannt walk without dragging my leg( alot more than usual) I also have trouble with my writing. I used to think I was having an attack. I found a chiro 3 yrs ago, he gently rotates my atlas and I could stand up a walk out of there back to normal. I did not want someone cracking my bones so I tracked down a doc (there are only 3 In NY) who does this method. It is call NUCCA (National Upper Cervical..... ) do a google on it. It absolutely is facinating and so gentle. Please try it, I bet it will help for sure. Kiki (LDN from 2003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Hi , I had some computer problems so don't have access to my old bookmarks. When I have them up and running I will send you some good links. One I can recommend off the top of my head is remedyfind. Brett posted here just recently with the info. It's a good place to learn what meds. worked for others and what didn't. I learned there are a few ways ms can affect your hand writing. One would be tremors that make it difficult to write or type. Another numbness with pain. I recently got that one and am thinking its more carpal tunnel related due to all the typing ect.. I was doing trying to rectify this computers problems. The other problem I have is cognitive. As strange as it may sound I forget how to write certain letters. My hands also jerk when I type. So god knows what I end up with sometimes. *grin* Does the numbness in your rib cage and back hurt also? That may be that awful ms hug thing. It does sound like you are having an exacerbation. I'm no doctor but I would encourage you to see one. Also make sure the processing of your ldn hasn't changed. Wish I could offer more. Your sure not alone in the balance thing, the avonex and copaxone stance. Ditto here! Take Care > I find that the best information is from others that have MS. I have been > taking 4.5 LDN from Skip's for about 3 yrs. I have to say it is wonderful, > the best thing I have found by far! I wouldn't hesitate to recommend it at > all. A little history: I have had MS since '94 DX in '97. Did the Avonex > (never again) and Copaxone (never again) take supplements and LDN now only. > Still walking although I can relate to those who spoke of drunken sailor or > toy soldier walking. Have good days and some not so good. By far, more > good since the LDN. About 10 days ago a new set of symptoms started and I > need your help. Numbness in rib cage and around back, extreme difficulty > walking, loss of balance and a foot that wants to drag. I tripped over the > hose over a year ago and have lost the ability to write and at times the > hand is very shaky. Had an MRI in Nov. and will heal is about 1 year, but > have been told the handwriting is an MS thing. I kind of believe it, just > odd that it started when I fell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 --- In low dose naltrexone , " lorenzo " <clorenzo02@...> wrote: > > Hi Group - I am having an exasberation and need your advise and help! I have > successfully been on LDN for 3 years and have to admit suprised that this is > happening. First time in almost 12 years. I really recommend the LDN the > results are wonderful. I understood that it would stop progression, so am > in amazement this is happening. Been almost 3 weeks, left side numb, foot > dragging, trouble with speech the most prominent problems. Trying not to > panic or freak out, but at times not very successful. My neuro called > yesterday and these were the options from him. Go to hospital, do 3 days IV > steriods. Do MRI. Go on " real " medicine (shots) I don't think so!! Need > advise on ending this nightmare. Vitamins? What to expect? Need your > help.................. > > _______________________________, I assume your LDN is from a reputable pharmacy the uses pure naltrexone powder and is NOT using any calcium carbonate as your capsule filler. I assume you are taking 4.5mg. Check with your pharmacy to make sure they have not changed anything. If all's okay in the pharmacy department I suggest you see the link below and do the candida home test. Candida can cause MS flares. Make sure your diet is Alkaline. All that information is in the candida thread. If I had to chose a standard treatment I'd do the steroids over the other stuff. First check the candida. Ignore the google ads at top. Low Dose Naltrexone Forum - Check yourself for Candida(yeast overgrowth)... http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1129136093 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Hi Cooky, Did you mean this message from bg? Chris. On a hunch, I did a search on using " Vulvodynia and Interstitial Cystitis. " Many very interesting hits came up which you may want to take a look at. The reason for my doing the search is because of a serious condition that seemingly no physician over the country was able to treat effectively -- but Dr. Crook had a great deal of success with these patients. Dr. Wm Crook (author of many books on the yeast connection) in his book, " The Yeast Connection and the Woman " wrote either a whole chapter or numerous pages on this subject. I didn't have this malady, but the writing on this made a deep impression. I encourage you to get a copy of this book from the library OR go to Amazon.com and order one new or used -- it was not expensive when I purchased it a number of years ago. It has numerous chapters on immune disorders. (Also, you might wish to go to a large bookstore and investigate the indexes of his other books.) He is/was one of the most respected physicians in the country for turning around chronic fatigue and other difficult illnesses. He passed away over a year ago. He truly saved my life about 12-13 years ago when I just knew I was not going to make it. Mainstream (so-called the best in Austin) after two years of treatment had just about wiped me out. It was only after I went on Dr. Crook's program in his book -- PLUS talked with him personally and he directed me to find a kindly physician to prescribe Diflucan for me to take for 3-1/2 months or more, and monitor how I was doing, that things started turning around. I did this, and I began getting my life back. I still adhere to his recommendations, and attribute feeling near-normal for a number of years now to his work and suggestions. Even while on AP, I managed to make sure I got two servings a day of a combination of quality yogurt from the health store, double or triple the powdered acidophilus dosage, and 1 tablespoon of Flora flaxseed oil in each serving. That combo kept the lining of my intestines in condition to absorb nutrients and keep that lining healthy while on pulsed antibiotics on MWF. Good luck, bg On 18/02/2006, at 6:34 AM, Cooky wrote: > Hi all, > > My daughter is to have surgery for intersitual cystitis and I remember > reading a post on this site about what to do instead of surgery. I > misplaced > this post. Does anyone still have it or know who posted it? I > appreciate any > and all suggestions since my daughter does not want to have this > surgery. > She is 30 yrs old and has constant UTI's and leaking. The leaking > bothers > her a lot because she is very active in sports. > > Thanks in advance. > > cooky > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hi, Cooky! Sally in Little Rock here. Hate to hear about your daughter. I did read (and this helped my 70 plus year old mom) that if you put a tampon in it stops the leaking. Maybe she could put some kind of vaginal cream on the tampon, as well, to prevent chafing and yeast infections. Plus, never wear tampons more than 4 hours at a time, to prevent Toxic Shock Syndrome-isn't being female FUN!?! I don't know what other advice you've had as you posted this a week ago, but I'm sure you've heard of drinking lots of water and cranberry juice and also doing Kegel exercises. Kegel(s) are done by contracting your pelvis just as you would to stop the flow of urine. I think these are taught in LaMaze (sp?) classes. Good luck to you and your daughter! Sally rheumatic off topic > http://www.ic-network.com/guestlectures/theoharides1205.html > > When my Aby cat had a problem the vet told me to give him glucosamine > because she suspected interstitial cystitis. He was on an antibiotic for > a > UTI and after two weeks had hematuria so then put on Baytril :-( > Immediately > when he completed that second round of antibiotics we just gave this nine > pound cat the Sundown GC we had for our Great Dane. He was on the GC for > several months. That was years ago and he (knock on wood) has not had a > problem since. > The GC does something to protect the bladder wall. > > > >> Hi all, >> >> My daughter is to have surgery for intersitual cystitis and I remember >> reading a post on this site about what to do instead of surgery. I > misplaced >> this post. Does anyone still have it or know who posted it? I appreciate > any >> and all suggestions since my daughter does not want to have this surgery. >> She is 30 yrs old and has constant UTI's and leaking. The leaking bothers >> her a lot because she is very active in sports. >> >> Thanks in advance. >> >> cooky > > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.375 / Virus Database: 267.15.11/264 - Release Date: 2/17/2006 > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 This is off topic, but there are many on this group with MS in the family, including a number new to the experience. Aletha, your husband was also somewhat recently diagnosed, right? My wife's neurologist appointments I attend religiously. Those who have not experienced a major exacerbation as the significant other may not understand. When 's cognitive function is badly affected, and she's the first to say, she isn't qualified to make her own medical decisions. I keep an ongoing rapport with the neurologist so if/when (maybe never again, we can hope) 's mind is afflicted, I don't have to waste time establishing a rapport. We also have medical dura power of attorneys on each other in addition to being married. It's a legal document that can be left on file at the hospital that no one will question. Any time either of us (usually ) is at a new hospital, we have one made for each other while there. Every hospital we've been to has their own forms and someone to administer them. A sequence of events put in the hospital 4 years ago w/ gall stones, on pain killers after admission because of it and dehydrated from vomiting before admission. She was also in an exacerbation, likely from the stress and fever ( gets a fever when anything goes wrong with her body). I left late the 2nd night and arrived early the next morning. I didn't want to leave but she insisted and I had to tend to her son, his irresponsible father and her day care business. That a.m. I realized she hadn't urinated since being admitted. Her MS had already made her unable to feel her bladder. She had been on a 150 mL/hr. drip for 38 hours, 5.7 liters in and nothing out! I asked for a hat, helped her out of her drug induced daze to the bathroom and she significantly overflowed a 1 liter hat, best guess from the sound 1.2 liters. I then demanded her output be monitored (she has MS, duh!). Very likely that incident stretched her bladder and it could have blown her kidneys. Her general practioner REALLY dropped the ball on that one. The nurses didn't even know she had MS until I told one of them and politely asked for that fact to be added to her chart so all the nurses would know. I didn't even get paid for doing that aspect of our doctor's job. She wasn't our doctor for long after that. I wouldn't be able to tolerate your situation, Aletha. If 's, " nero " (I like that) started behaving like that, she would either have to straighten up or be fired. Aletha Wittmann wrote: >Joanna, > >I am so sorry that your doctor is so insensitive. It sounds like he has >lost his since of really helping people. Even my husbands very wonderful >Nero (in that she is very sweet and caring towards him), will not let me >speak, she cuts me off in visits. She never looked at the LDN information >that I presented and she seems to resent my asking questions and being >involved, even though she says she would not have it any other way when I >ask if she minds my coming in to the office visit. > >I love our general practitioner. She was not available right after was >diagnosed with MS due to pregnancy leave. Upon her return I told her about >LDN and how everything went with that product and she was very open minded >and said that was great. She has her skeptical side, which I think is good >because she is thinking, and not just following blindly. Her name is Joanna >too. She is awesome and does a lot of research on everything. > >Just remember that there are wonderful doctors out there too and you just >need to find a better one. > >Hang in there kiddo, we are all here for you > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Wobenzyme is totally different and has no serrapeptase in it. Bruce Guilmette, PhD Survive Cancer Foundation, Inc. Http://survivecancer.net Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matt 6:34 (NIV) From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of mykittypaws Sent: Sunday, April 02, 2006 4:20 PM low dose naltrexone Subject: [low dose naltrexone] off topic Hello everyone, does anyone know if a product called Wobenzyme from Germany have the serapeptase in it? It is suppose to be comparable to Vitalzyme and i am curious as I take the Wobenzymes. I am experiencing some new inflamation in my joints. This has come on quire suddenly and my hands are my business so it warrants my immediate attention.Thanks in advance for any suggestions. I take Krill, MSM and Glucosamine,. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Thanks Kathy [low dose naltrexone] off topic Aletha, I am sorry! I didn't really answer your question. Phosphytylserine, phosphytylcholine, sphingomyelin, phosphytyletholamine, are all lipids that make-up the myelin sheath. They also support cognitive functioning. They are important in ms because they change the charge to the cell membrane and numerous studies from Hans Neiper show that they help remyelination to occur and prevent or protect it from further destruction. Best, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Hi everyone, I have noticed over the years many of you either have cholesterol problems or know someone who does. I know of a few different natural meds for this but I would like to know which ones you all have tried and worked well. My hubby has a bit of a high cholesterol and I do not want him on allopathic junk. I would appreciate any feedack. thank you, cooky AP 9 yrs (wow thats amazing) Clindy IV 7yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Well....thank you very much! (ah gee, now I'm gonna have to be nice... what kind of 'rugged' Caveman-style image does this portray...sigh) hmmm...let's see...(confused)...caveman? cave-person? no, to heck with that 'political' correct bull-soup...Cave-dweller? nope too im- personal...sigh. Cap'n Caveman(kinda?) Re: [low dose naltrexone] I have a question Not only does Jim look just great everyone, he and his wife are the most wonderful, sweet and kind people you could ever meet. All "blushing" aside. Aletha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Cookie...My husband is just a tad on the high side cholesterol wise. I try to keep his eating healthy and make him take a B complex along with a regular vitamin and 1000mg grapefruit pectin. They are all supposed to be good for the heart. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 I strongly suspected you were a good person before Cyndi. Now I'm sure of it. Cyndi Lenz wrote: > Lyme is very rare down here- we have our hosts of tick issues -Lyme is > not one of them. did your dogs have ticks. speaking of goldens- I > rescue goldens > www.goldenrescuesouthflorida.com (and have two myself) > cyndi > On Jun 17, 2006, at 2:05 AM, Kathy Lintzenich wrote: > >> >> This message is directed to Dave or anyone who has knowledge >> with Lyme dis-ease. Could I have gotten Lyme in South Florida. I have >> 2 Golden Retrievers and have bred puppies in the past. Thanks in >> advance, Kathy >> >> _ >> . >> > > > Quote Link to comment Share on other sites More sharing options...
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