Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 In a message dated 5/13/2004 10:53:23 PM Eastern Daylight Time, annie@... writes: just picked up my script so I wanted to let you know about the compound mixture. It is comprised of Dovonex, Ultravate and Aquaphor. The first 2 are anti-inflammatory, and the third is the stuff you can buy over the counter in the skin lotion dept. HI Annie, My derm made me a compound of Ultravate, salicylic acid and some type of coal tar prep. It works the best on the P for me then anything else ever did. That is too bad about you insurance. I hope everything works out for you. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2005 Report Share Posted October 7, 2005 Not in the high desert, but I highly recommend Dr. Wallace in LA. After 2 years of struggling, he is the one guy who is actually knowledgeable enough to figure out what is going on with me. From what I've heard, he's one of the best in the world. He's worth the trip. I'm in Riverside county, and I have no problem driving out to see him. He is affiliated with UCLA but works out of cedars-sinai. I was very very impressed with him. I may be " special " , but he is immediately starting me on a very aggressive treatment program. I'm sure he takes each situation differently, but he is the first that didn't just call me " interesting " or " unusual " and shuffle me around. Another pretty decent place is Arthritis Center of Riverside. Personally, I like Dr. Lallande better than Dr. Franco, but that is just my preference. Both are very good and very knowledgeable...I just needed a little more expertise than they were able to offer me. They are also VERY thorough, listen to you and answer questions, and believe that a combination of traditional and non-traditional treatments are the best way to treat RA and other autoimmune diseases, which is what attracted me to them in the first place. Their website is www.thearthritiscenter.com. Good luck. Good rheumies are hard to find, I've discovered. > > Does anyone know of any good rheumys in southern california, high > desert area? It seems that most of you are far away but I thought I > would ask. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 The rheumatologist said that long term antibiotics ONLY works in Lyme NOT Sjogrens and anyone that has gotten better with any rheumatic conditions only got better because of the placebo affect not because of the antibiotics. And that long term antibiotics cause problems. The thinking was that if it took years to get better it was something else. She said if I tried anything it should be Plaquenil although the other rheumies said it does NOT work for the dryness just joint pain.And before she didnt offer it to me. Ugh. It was so frustrating to hear. How can doctors not know the benefits of long term antibiotics? She said they have an anti inflammatory affect and also antimicrobial yet didnt rx me. Thats fine I will get rx someplace else. Then I go to the store and this one milk said it came from a cow that was not given antibiotics. Ugh. So I guess I am on my own when I begin the protocol soon. As far as doctors anyway, I have you guys lynneandsantos <lynneandsantos@...> wrote: OH OH I am in trouble ...a writer and a teacher,YIKES. I never learned English so forgive my mistakes. Lynne smoosh215 wrote: > Dodo, > > I like the name too. I have lots of nick names like smoosh in my > screen name. That evolved from Mish to Mush to Smoosh and even > Smooshy sometimes. My older sister only calls me smoosh - you can > imagine the looks when we're out in public. I always thought your > posts were so well-written. I should've known you were a writer. I > used to teach writing to 3rd, 4th, & 5th graders before I had my > kids and went on leave. > > I'm fortunate enough to have a great natual food store right down > the road. I shop there a lot lately and they seem to have > everything. I'm sure I'll find what I need there. > > Congrats with your PCP being so receptive and good luck with the > book. I'd love to help out any way I can. > > Take care, > Michou > > > > > > > > > Just wanted to say thanks to Dolores and Lynn for the input. I > > have > > > > noticed such a difference since the celiac diagnosis and > dietary > > > > changes. My skin has cleared up almost completely and my dry, > > cracked > > > > fingers are about 80% better. My energy has increased > > tremendously as > > > > well. I still have joint pain and nodules but the swelling has > > gone > > > > down some in my fingers and wrists. > > > > > > > > Thanks to all for all your help and concern. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 It took me two years to amass a group of doctors willing to placate me. I just found one who really understands and wants to work with me. Don't give up. Keep trying. You will find the right doc and keep reading everything. You are on the right track. But you will need a doc eventually and get started on the A/P. It was my saving grace. Dolores Vicki <genuinelysweet2002@...> wrote: The rheumatologist said that long term antibiotics ONLY works in Lyme NOT Sjogrens and anyone that has gotten better with any rheumatic conditions only got better because of the placebo affect not because of the antibiotics. And that long term antibiotics cause problems. The thinking was that if it took years to get better it was something else. She said if I tried anything it should be Plaquenil although the other rheumies said it does NOT work for the dryness just joint pain.And before she didnt offer it to me. Ugh. It was so frustrating to hear. How can doctors not know the benefits of long term antibiotics? She said they have an anti inflammatory affect and also antimicrobial yet didnt rx me. Thats fine I will get rx someplace else. Then I go to the store and this one milk said it came from a cow that was not given antibiotics. Ugh. So I guess I am on my own when I begin the protocol soon. As far as doctors anyway, I have you guys lynneandsantos <lynneandsantos@...> wrote: OH OH I am in trouble ...a writer and a teacher,YIKES. I never learned English so forgive my mistakes. Lynne smoosh215 wrote: > Dodo, > > I like the name too. I have lots of nick names like smoosh in my > screen name. That evolved from Mish to Mush to Smoosh and even > Smooshy sometimes. My older sister only calls me smoosh - you can > imagine the looks when we're out in public. I always thought your > posts were so well-written. I should've known you were a writer. I > used to teach writing to 3rd, 4th, & 5th graders before I had my > kids and went on leave. > > I'm fortunate enough to have a great natual food store right down > the road. I shop there a lot lately and they seem to have > everything. I'm sure I'll find what I need there. > > Congrats with your PCP being so receptive and good luck with the > book. I'd love to help out any way I can. > > Take care, > Michou > > > > > > > > > Just wanted to say thanks to Dolores and Lynn for the input. I > > have > > > > noticed such a difference since the celiac diagnosis and > dietary > > > > changes. My skin has cleared up almost completely and my dry, > > cracked > > > > fingers are about 80% better. My energy has increased > > tremendously as > > > > well. I still have joint pain and nodules but the swelling has > > gone > > > > down some in my fingers and wrists. > > > > > > > > Thanks to all for all your help and concern. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 I went to a rheumy - one time only - when he said 60% of his patients are cured by the placebo effect, that AP was a hoxe. After my words with him, he offered to refund his office visit money and cancel the blood tests he already drew blood for. He knew he was wrong about AP, but the drug companies are paying him too well to contradict them, so he said. --- Vicki <genuinelysweet2002@...> wrote: > The rheumatologist said that long term antibiotics > ONLY works in Lyme NOT Sjogrens and anyone that has > gotten better with any rheumatic conditions only got > better because of the placebo affect not because of > the antibiotics. And that long term antibiotics > cause problems. The thinking was that if it took > years to get better it was something else. She said > if I tried anything it should be Plaquenil although > the other rheumies said it does NOT work for the > dryness just joint pain.And before she didnt offer > it to me. Ugh. It was so frustrating to hear. How > can doctors not know the benefits of long term > antibiotics? She said they have an anti inflammatory > affect and also antimicrobial yet didnt rx me. Thats > fine I will get rx someplace else. Then I go to the > store and this one milk said it came from a cow that > was not given antibiotics. Ugh. So I guess I am on > my own when I begin the protocol soon. As far as > doctors anyway, I have you guys > > lynneandsantos <lynneandsantos@...> wrote: > OH OH I am in trouble ...a writer and a > teacher,YIKES. I never learned > English so forgive my mistakes. Lynne > > smoosh215 wrote: > > > Dodo, > > > > I like the name too. I have lots of nick names > like smoosh in my > > screen name. That evolved from Mish to Mush to > Smoosh and even > > Smooshy sometimes. My older sister only calls me > smoosh - you can > > imagine the looks when we're out in public. I > always thought your > > posts were so well-written. I should've known you > were a writer. I > > used to teach writing to 3rd, 4th, & 5th graders > before I had my > > kids and went on leave. > > > > I'm fortunate enough to have a great natual food > store right down > > the road. I shop there a lot lately and they seem > to have > > everything. I'm sure I'll find what I need there. > > > > Congrats with your PCP being so receptive and good > luck with the > > book. I'd love to help out any way I can. > > > > Take care, > > Michou > > > > > > > Lynne, > > > > > > You are just plethera of information!!!! So > Tri-salts and jojoba > > > can be purchased at the grocery store? Any > particular === message truncated === ________________________________________________________________________________\ ____ Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. http://answers./dir/?link=list & sid=396545469 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 Hello, This is Dolores and maybe this will explain and untangle the mystery. Our immune systems are in place to kill off invading bacteria and viruses. We get these Rheumatoid type diseases like Lupus, Scleroderma, R/A, Sarcoidosis Ankylosing Sponylitis, etc: which cause inflammation, pain and debilitates us. The old school of Rheumy's were taught to give medications that suppress the immune response in our systems, so that we initially feel better. But we continue to get sicker and eventually die from the complications of the drugs. The new school, and very few doctors have learned or accepted this yet, is that these diseases are caused by a slow growing type of minimicrobe called micoplasma, of which there are many kinds, and most people have been exposed to them w/o getting sick. It is only when an overabundance of them have accumulated in the body that we become sick. And the reason is that our immune system, which is a built in mechanism to fight off bacteria and viruses, has become overwhelmed and can no longer function. This is called a TH 1 disease. When I got sick with Scleroderma, my group of Rheumatologists told me I was terminal and that they could only treat the symptoms with these Immune suppressants. They offered me humira, remicade, thalidomide, steroids, plaquenil and such. But they also were up front and told me that my lungs had maybe two or three years before I would succumb and die. Well, I refused to suppress my Immune system and did my own research. Here's what I read: Micoplasmas are the cause of these type of diseases. That is called " The Infectious Theory. " There have been successful trials where people have, not only gotten better, but have gone into remission by using antibiotics. This is called " Antibiotic Protocol " now called A/P for short. My thought was that if I was going to die anyway, I may as well try it. I didn't know exactly how it worked at that time, but I started on Minocin 100mg twice a day in January of 2006. Exactly 18 months later this past May, I went into remission. I am still on the Minocin and feeling great. My doctor who told me I would die, is totally amazed. My symptoms have even regressed and my lungs are fine. What I found out along the way because I am still researching the field is that antibiotics do not kill the micoplasmas, they are first an antiinflammatory and second they only weaken the micoplasma, not kill them. It is the immune system becoming stronger that starts to work again that kills them. Meanwhile, I began working on enhancing or boosting my immune system and that's another whole subject. I am now at a point where my micoplasma count is tolerable and my immune system is doing it's work properly and I am feeling very well. However, I am not cured and that is my next project. In the fall, I plan on going up the ladder one more notch and start another protocol called the Marshall Protocol or M/P. This is a 3 phase protocol which is still part of the A/P, only a bit more intense and uses more antibiotics and a blood pressure lowering drug which has shown to be more effective in weakening the micoplasma. This protocol must be monitored by an M.D. who understands the cause and effect of the disease process and is willing to take the time to study it and speak with Trevor Marshall himself, the inventor of the protocol. Now a note on micoplasmas. They are very slow growing and very slow dying. They are nasty when being attacked by the immune system. When they die, they emit a toxin. This is called a herx. It makes us very ill and can even be dangerous in the hands of the wrong doctor. We are fooled into thinking that the process is not working when actually we are getting better. I am in the process of assembling a team of doctors. This disease has taken out a big chunk of my time and energy, but it has been worth it. I will be 71 next month. Longevity runs in my family. My mom is 93 and doing fine. My dad died at 90 from emphysema because he smoked all his life. My great grandmother passed in her sleep at 107, so I am not going to break the chain. When I am done with all this, I am writing a book with the help of my doctors, a friend with a science background who helped me amass the information and all the wonderful people I have met along the way who are volunteering their stories. My husband and I work with several foundations who are excited about the project. I am already a published author, but have never taken on a project of this magnitude. Please keep me in your prayers. I hope you all get well. The world needs to know that there is hope. For those of you who are suffering, I Know! I am one of you. Been there! We have you in our hearts and wish you well.. You are the reason I am writing the book. By the way, I am a retired nurse. I used to make placebos. A gel capsule with a bit of sugar in them. Don't be fooled. Maybe your mind can fool you into getting better, but your body will be able to differentiate. We gave these out instead of pain pills at night. Most people relaxed themselves thinking they had a pain pill and fell asleep on their own. Aaaaah! such is the power of the mind. Good luck to all of you. Carolyn Brownlee <carolynbrownlee@...> wrote: I went to a rheumy - one time only - when he said 60% of his patients are cured by the placebo effect, that AP was a hoxe. After my words with him, he offered to refund his office visit money and cancel the blood tests he already drew blood for. He knew he was wrong about AP, but the drug companies are paying him too well to contradict them, so he said. --- Vicki <genuinelysweet2002@...> wrote: > The rheumatologist said that long term antibiotics > ONLY works in Lyme NOT Sjogrens and anyone that has > gotten better with any rheumatic conditions only got > better because of the placebo affect not because of > the antibiotics. And that long term antibiotics > cause problems. The thinking was that if it took > years to get better it was something else. She said > if I tried anything it should be Plaquenil although > the other rheumies said it does NOT work for the > dryness just joint pain.And before she didnt offer > it to me. Ugh. It was so frustrating to hear. How > can doctors not know the benefits of long term > antibiotics? She said they have an anti inflammatory > affect and also antimicrobial yet didnt rx me. Thats > fine I will get rx someplace else. Then I go to the > store and this one milk said it came from a cow that > was not given antibiotics. Ugh. So I guess I am on > my own when I begin the protocol soon. As far as > doctors anyway, I have you guys > > lynneandsantos <lynneandsantos@...> wrote: > OH OH I am in trouble ...a writer and a > teacher,YIKES. I never learned > English so forgive my mistakes. Lynne > > smoosh215 wrote: > > > Dodo, > > > > I like the name too. I have lots of nick names > like smoosh in my > > screen name. That evolved from Mish to Mush to > Smoosh and even > > Smooshy sometimes. My older sister only calls me > smoosh - you can > > imagine the looks when we're out in public. I > always thought your > > posts were so well-written. I should've known you > were a writer. I > > used to teach writing to 3rd, 4th, & 5th graders > before I had my > > kids and went on leave. > > > > I'm fortunate enough to have a great natual food > store right down > > the road. I shop there a lot lately and they seem > to have > > everything. I'm sure I'll find what I need there. > > > > Congrats with your PCP being so receptive and good > luck with the > > book. I'd love to help out any way I can. > > > > Take care, > > Michou > > > > > > > Lynne, > > > > > > You are just plethera of information!!!! So > Tri-salts and jojoba > > > can be purchased at the grocery store? Any > particular === message truncated === __________________________________________________________ Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. http://answers./dir/?link=list & sid=396545469 --------------------------------- No need to miss a message. Get email on-the-go with for Mobile. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 Looking for Dr.s in the Spokane Washington area that prescribe LDN. Thanks, LeonaSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 Hi , A gal named Crystal maintains a list by location of physicians who prescribe LDN and of pharmacies that compound it. You can contact her at crystalangel6771@... If that doesn't work out, you can buy 50 mg Naltrexone without a prescription tablets here: http://tinyurl.com/2vfdw5 and convert them to LDN using the instructions here: http://tinyurl.com/3alm3y With best wishes, Dudley [low dose naltrexone] Doctors Looking for doctor to persribe naltrexone in SE Wisconsin or nothern Illinois. Thank you..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Remember, on this list we are allowed to mention doctors by name. That should help avoid guessing and confusion. Take care, Ute Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Doctors who prescribe LDN and do telephone consultations: Dr. Sullivan 1001 S. Market St. Ste. B Mechanicsburg, PA 17055 (717) 697-5050 www.ACAM.org --- > > I want to use LDN for autoimmune, could anyone tell me of a doctor in > Gerogia or south that could prescribe or a doctor that will do phone > consultations? > > > > Thanks so much > > > > Laurie > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.