Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Valarmie!!! We all seriously want to know who this doctor is and where he is located??? From: rheumatic [mailto:rheumatic ] On Behalf Of valarmie Sent: Wednesday, April 14, 2010 7:45 PM rheumatic Subject: rheumatic Re: SD (Systemic) > > From: Cooky Stonkey <cookee1@...> > Subject: RE: rheumatic SD (Systemic) > rheumatic <mailto:rheumatic%40> > Date: Wednesday, April 14, 2010, 11:23 AM > > > > > > > > Â > > > > > > > > > > Hi, > > > > I have RA and fibro and the thing that started my roadback 12 years ago was > > IV clindamycin. I also read that Scleraderma patients need to do the IV's > > although there are a few people on this site who are doing OK on Minocin > > without IV's. You will wish you didn't wait to start the IV's when you feel > > all the benefits. You are VERY lucky to have a doctor that is so > > knowledgeable and is willing to do the IV's. Where is this amazing doctor? > > He is not just practicing medicine .he actually knows medicine! > > > > Cooky > > > > Subject: rheumatic SD (Systemic) > > > > Hi everyone. > > I was diagnosed with CREST about 18 years ago!!! > > My manifestation of the disease started with just cold hand in which I still > > have today and of course my fingers will turn purple if temp is cold. I also > > have some motility issues in my esophagus but minimal. I do not choke on > > foods or liquids. I do have difficulty if food is dry. > > Anyway to make a very long journey short the just of it is in my past few > > years what I am experiencing more so is issues in my lungs. > > If I had not gone to the Grand Canyon a couple of years ago and attempted to > > hike back I would have never really known that my lungs were being > > compromised. I have gone to many many doctors and the most sensible one has > > been a doctor (pulmonologist) out of UCLA who has stated to me that I do > > have lost about 50 % of lung capacity due to lung fibrosis and he states > > that other than shortness of breath which occurs frequently based on what I > > am doing, he does not recommend toxic drugs. He basically has me come in > > every few months and go through the usual test PFT, 6 minute walk, echo,and > > CT scan. He stated that if he would have started me on cellcept, cytoxin and > > other crap I would probably have gotten worse than somewhat stable. > > Anyway, what I have seems to be a very slow type of scleroderma I have been > > researching AP protocol the last few months and went to see a AP doctor who > > stated that he wants me to start on 100mg minocin five days a week 2x day > > and skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a > > week and off 2 weeks and back on. > > I have read many dosing protocols and the IV part of it seems excessive. I > > have read a week to begin and then one infusion every few weeks. I do not > > know much about the dosing but again I am very conservative and do not want > > to blast my body that quickly. If anyone does have lung involvement with SD > > and are on AP can you share your thoughts on this and how are you doing with > > the therapy. > > Thank you. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 It's Dr. Franco in Riverside, CA. From: Cooky Stonkey <cookee1@...> Subject: RE: rheumatic Re: SD (Systemic) rheumatic Date: Wednesday, April 14, 2010, 10:11 PM Valarmie!!! We all seriously want to know who this doctor is and where he is located??? From: rheumatic [mailto:rheumatic ] On Behalf Of valarmie Sent: Wednesday, April 14, 2010 7:45 PM rheumatic Subject: rheumatic Re: SD (Systemic) > > From: Cooky Stonkey <cookee1@...> > Subject: RE: rheumatic SD (Systemic) > rheumatic <mailto:rheumatic%40> > Date: Wednesday, April 14, 2010, 11:23 AM > > > > > > > > Â > > > > > > > > > > Hi, > > > > I have RA and fibro and the thing that started my roadback 12 years ago was > > IV clindamycin. I also read that Scleraderma patients need to do the IV's > > although there are a few people on this site who are doing OK on Minocin > > without IV's. You will wish you didn't wait to start the IV's when you feel > > all the benefits. You are VERY lucky to have a doctor that is so > > knowledgeable and is willing to do the IV's. Where is this amazing doctor? > > He is not just practicing medicine .he actually knows medicine! > > > > Cooky > > > > Subject: rheumatic SD (Systemic) > > > > Hi everyone. > > I was diagnosed with CREST about 18 years ago!!! > > My manifestation of the disease started with just cold hand in which I still > > have today and of course my fingers will turn purple if temp is cold. I also > > have some motility issues in my esophagus but minimal. I do not choke on > > foods or liquids. I do have difficulty if food is dry. > > Anyway to make a very long journey short the just of it is in my past few > > years what I am experiencing more so is issues in my lungs. > > If I had not gone to the Grand Canyon a couple of years ago and attempted to > > hike back I would have never really known that my lungs were being > > compromised. I have gone to many many doctors and the most sensible one has > > been a doctor (pulmonologist) out of UCLA who has stated to me that I do > > have lost about 50 % of lung capacity due to lung fibrosis and he states > > that other than shortness of breath which occurs frequently based on what I > > am doing, he does not recommend toxic drugs. He basically has me come in > > every few months and go through the usual test PFT, 6 minute walk, echo,and > > CT scan. He stated that if he would have started me on cellcept, cytoxin and > > other crap I would probably have gotten worse than somewhat stable. > > Anyway, what I have seems to be a very slow type of scleroderma I have been > > researching AP protocol the last few months and went to see a AP doctor who > > stated that he wants me to start on 100mg minocin five days a week 2x day > > and skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a > > week and off 2 weeks and back on. > > I have read many dosing protocols and the IV part of it seems excessive. I > > have read a week to begin and then one infusion every few weeks. I do not > > know much about the dosing but again I am very conservative and do not want > > to blast my body that quickly. If anyone does have lung involvement with SD > > and are on AP can you share your thoughts on this and how are you doing with > > the therapy. > > Thank you. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Ah, of course, the great DR. Franco...he is quite good...In all my travels to physicians since I became ill, I have seen Dr. Franco as well...very good DR.. Everyone on this list knows tho...that my Dr is Dr. Hendriks Whitman in NJ...I have seen him now for over 10 yrs...and he has saved my life more than once... We all have to find what works for each of us... Good Luck...Debbie rheumatic SD (Systemic) > > > > Hi everyone. > > I was diagnosed with CREST about 18 years ago!!! > > My manifestation of the disease started with just cold hand in which I still > > have today and of course my fingers will turn purple if temp is cold. I also > > have some motility issues in my esophagus but minimal. I do not choke on > > foods or liquids. I do have difficulty if food is dry. > > Anyway to make a very long journey short the just of it is in my past few > > years what I am experiencing more so is issues in my lungs. > > If I had not gone to the Grand Canyon a couple of years ago and attempted to > > hike back I would have never really known that my lungs were being > > compromised. I have gone to many many doctors and the most sensible one has > > been a doctor (pulmonologist) out of UCLA who has stated to me that I do > > have lost about 50 % of lung capacity due to lung fibrosis and he states > > that other than shortness of breath which occurs frequently based on what I > > am doing, he does not recommend toxic drugs. He basically has me come in > > every few months and go through the usual test PFT, 6 minute walk, echo,and > > CT scan. He stated that if he would have started me on cellcept, cytoxin and > > other crap I would probably have gotten worse than somewhat stable. > > Anyway, what I have seems to be a very slow type of scleroderma I have been > > researching AP protocol the last few months and went to see a AP doctor who > > stated that he wants me to start on 100mg minocin five days a week 2x day > > and skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a > > week and off 2 weeks and back on. > > I have read many dosing protocols and the IV part of it seems excessive. I > > have read a week to begin and then one infusion every few weeks. I do not > > know much about the dosing but again I am very conservative and do not want > > to blast my body that quickly. If anyone does have lung involvement with SD > > and are on AP can you share your thoughts on this and how are you doing with > > the therapy. > > Thank you. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010 Dr. Franco is one of the most experienced physicians in the use of this protocol. He has been using it almost exclusively for at least 20 years. Trust him! It was Dr. Franco who put on that great seminar back in '98 for patients in his practice and in this support group that a number in this group attended. He was also the speaker at a conference we put on in Dallas, Texas. With 18 years of this disease, and particularly with lung involvement, treatment MUST be aggressive I would advise you to keep a journal to help you remember what you need to tell him each visit so he can tailor the therapy to your needs. I realize you don't know me, but I speak from experience. If I were you, in addition to doing the antibiotic therapy I'd be making sure I was eating a healthy diet and doing parasite, bowel, liver/gallbladder and heavy metal cleanses. And here's a tip for anyone with lung issues - try breathing colloidal silver through a nebulizer several times a day. I would suggest you spend some time reading the stories on www.rheumatic.org of people with your disease that have benefited from this therapy. BTW, I started therapy with daily IVs and then had one every other week for a couple of years. In 1994, I had a serious flare after taking daily care of a scleroderma patient for three months who decided too late to start on this therapy. This time the IVs were prescribed (along with Minocin daily) for 5 days every 4 weeks until remission was established again. Ethel rheumatic Re: SD (Systemic) > > > >> >> Hi everyone. >> I was diagnosed with CREST about 18 years ago!!! >> My manifestation of the disease started with just cold hand in which I >> still have today and of course my fingers will turn purple if temp is >> cold. I also have some motility issues in my esophagus but minimal. I do >> not choke on foods or liquids. I do have difficulty if food is dry. >> Anyway to make a very long journey short the just of it is in my past few >> years what I am experiencing more so is issues in my lungs. >> If I had not gone to the Grand Canyon a couple of years ago and attempted >> to hike back I would have never really known that my lungs were being >> compromised. I have gone to many many doctors and the most sensible one >> has been a doctor (pulmonologist) out of UCLA who has stated to me that I >> do have lost about 50 % of lung capacity due to lung fibrosis and he >> states that other than shortness of breath which occurs frequently based >> on what I am doing, he does not recommend toxic drugs. He basically has >> me come in every few months and go through the usual test PFT, 6 minute >> walk, echo,and CT scan. He stated that if he would have started me on >> cellcept, cytoxin and other crap I would probably have gotten worse than >> somewhat stable. >> Anyway, what I have seems to be a very slow type of scleroderma I have >> been researching AP protocol the last few months and went to see a AP >> doctor who stated that he wants me to start on 100mg minocin five days a >> week 2x day and skip Mon- Thurs. He also want to start me on IV of >> clindamycin 7 days a week and off 2 weeks and back on. >> I have read many dosing protocols and the IV part of it seems excessive. >> I have read a week to begin and then one infusion every few weeks. I do >> not know much about the dosing but again I am very conservative and do >> not want to blast my body that quickly. If anyone does have lung >> involvement with SD and are on AP can you share your thoughts on this and >> how are you doing with the therapy. >> Thank you. >> > Hi everyone. It is Dr. Franco in Riverside. I have been there twice first > seen by his assistant and few days ago by Dr.F. Do not know much about him > other than what I have briefly seen in blogs. > I am wondering if it is wise to start slow and build up until your body > gets used to the introduction of AP. > Thanks > > > > ------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribe@...! Groups > Links > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2010 Report Share Posted April 24, 2010 Hi Valarmie. I also have systemic scleroderma diffuse along with all the crest symptoms. No, I take that back. I HAD is the appropriate word. Diagnosed as terminal in 2005, a group of docs stood by talking to each other about me as though I weren't in the room and how they were going to keep me comfortable. My lungs were so fibrosed that it was obvious they didn't hold out much hope for me. They spoke about toxic drugs, chemotherapy and when I balked, they said, " Well, you are terminally ill, but you will not suffer. I thought of myself in a bed, being kept semicomatose awaiting my death. They said it would be my lungs that would be the death of me and I pictured my 16 year old cousin who had died from pulmonary problems from Lupus. Fast forward: Today, I am in complete remission. My ANA was 640, now 0. RF was up in the 80's now 0. My lungs fibrosed and breathing at 55% capacity. My chest xray now says normal findings.. All symptoms have completely disappeared. I was also told those many short 5 years ago that I had MCTD & R/A. Not only that, but my heart which was giving me so many problems and had required so many surgeries, is now quietly beating normally again. Hypertension & diabetes are also fully controlled with minimal meds and my cholesteral & triglyceride levels are also normal without the use of statins. I went from bedridden to fully functional in 5 years and I owe it all to the antibiotic protocol and the lovely lady who saved my life by telling me about it. Yes, I am totally cured and my body has restored itself like it was meant to do. I was once positive for micoplasma pneumonae and various viruses. I took a variety of antibiotics at different times and alternated dosages. Most Rheumies couldn't help me, but since the book said my disease is of Infectious origin, I sought out an Infectious Disease doctor and he gave me all the appropriate antibiotics I needed and monitored my progress with frequent testing. If these diseases are indeed not autoimmune, but of Infectious origin, then why are we, as patients chasing after Rheumies who have their hands tied by our diagnoses. It makes no sense to me to keep looking for a Rheumie to give us antibiotics when there are so many good Infectious disease docs waiting for a patient with an infection to call them. You don't go to an orange orchard to find apples. When we learn to go to the right store for the item we need, we won't leave empty handed nor frustrated. You see, we are part of the problem also. Take care, Love to all Dolores~~~~Yes, I am back on line. And read all 350 e:mails! Whew! Missed you all.   From: valarmie <valarmie@...> Subject: rheumatic Re: SD (Systemic) rheumatic Date: Thursday, April 15, 2010, 12:03 PM  > > Hi everyone. > I was diagnosed with CREST about 18 years ago!!! > My manifestation of the disease started with just cold hand in which I still have today and of course my fingers will turn purple if temp is cold. I also have some motility issues in my esophagus but minimal. I do not choke on foods or liquids. I do have difficulty if food is dry. > Anyway to make a very long journey short the just of it is in my past few years what I am experiencing more so is issues in my lungs. > If I had not gone to the Grand Canyon a couple of years ago and attempted to hike back I would have never really known that my lungs were being compromised. I have gone to many many doctors and the most sensible one has been a doctor (pulmonologist) out of UCLA who has stated to me that I do have lost about 50 % of lung capacity due to lung fibrosis and he states that other than shortness of breath which occurs frequently based on what I am doing, he does not recommend toxic drugs. He basically has me come in every few months and go through the usual test PFT, 6 minute walk, echo,and CT scan. He stated that if he would have started me on cellcept, cytoxin and other crap I would probably have gotten worse than somewhat stable. > Anyway, what I have seems to be a very slow type of scleroderma I have been researching AP protocol the last few months and went to see a AP doctor who stated that he wants me to start on 100mg minocin five days a week 2x day and skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a week and off 2 weeks and back on. > I have read many dosing protocols and the IV part of it seems excessive. I have read a week to begin and then one infusion every few weeks. I do not know much about the dosing but again I am very conservative and do not want to blast my body that quickly. If anyone does have lung involvement with SD and are on AP can you share your thoughts on this and how are you doing with the therapy. > Thank you. > Hi everyone. It is Dr. Franco in Riverside. I have been there twice first seen by his assistant and few days ago by Dr.F. Do not know much about him other than what I have briefly seen in blogs. I am wondering if it is wise to start slow and build up until your body gets used to the introduction of AP. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2010 Report Share Posted April 25, 2010 Hi Dolores - So glad to see a post from you again. Everytime I read one of your posts it makes me cry because I am so happy to see how well you are doing, and what you have accomplished in your journey. As you may recall, I too have diffuse systemic scleroderma, raynauds, RA, and sjogrens, and hope and pray that my hard work will one day bring me the same results. I to this point, have not been able to get anyone to prescribe any other antibiotics to me other than minocycline. I had, prior to even getting the minocycline been getting my own antibiotics from an on-line pharmacy, and was taking doxycip and doxycycline, and felt quite good during that time. I live in a very rural area of New Hampshire, and unfortunately good doctors are hard to come by, if not impossible, or at least that has been my experience. Prior to going to Boston for the confirmation of what I'd known I had for nearly a year, I saw 9 different doctors in my area that made me feel like I was nuts for telling them I believed I had scleroderma. I need to be more aggresive in my fight to get the meds that I believe will help me so much to have a much better quality of life. Thanks for listening, and thank you for your posts - they keep me going! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2010 Report Share Posted April 25, 2010 Hi Gail, It feels so good to be back on line and in touch again. Wow! How did I ever live my entire life without a computer??????? I love hearing from you all and reading the posts from the newbies. I remember when I was a newbie. I was so confused, scared and felt bewildered at every turn. Couldn't understand what was happening to me. Didn't know that all that confusion was called brain fog and a major part of the disease. I say this to all the newbies. Even the docs do not take that into consideration. Right away when tests come back negative or they haven't ordered the correct tests, they try to get us to see a mental health professional. When my PC doc suggested that to me, I became livid. I knew there was something very wrong with me and was very frustrated that, for two years I suffered, going from specialist to specialist and them not finding what was ailing me. I think that is the most difficult part. No doc took me seriously. It finally took a very advanced case of pulmonary fibrosis to wake up a few people and then it wasn't till 8 months later that I was diagnosed with SD. I told everyone at that time, that I wanted to put, " See, I told you I was sick! " on my tombstone. Well, I don't think like that anymore. And you will turn the corner one of these days yourself, when you least expect it. I am in full remission as far as all blood work goes and symptoms. What my body is working on now is repairing itself. And that is on going. My chest x ray came back normal, so I know that is on the mend. If I walk on cold tiles or on concrete in bare feet, then I will wake up in the morning with cramping legs. It has only happened twice and both times it was from waking barefooted on cold surfaces. This morning was one. Needed help to get into a hot shower. Within a few minutes, the hot water relaxed the cramping and I have been fine the rest of the day. Made a gorgeous rock garden with plants & decorations. I'm trying to get the yard in order so we can put in a pool and hot tub. Can't wait! Will probably build that sauna also that Dr. Mercola talks about. Well, take care and just keep your eye on getting to the remission stage. Love & Hugs, Dolores From: ONYX8257@... <ONYX8257@...> Subject: Re: rheumatic Re: SD (Systemic) rheumatic Date: Sunday, April 25, 2010, 9:01 AM  Hi Dolores - So glad to see a post from you again. Everytime I read one of your posts it makes me cry because I am so happy to see how well you are doing, and what you have accomplished in your journey. As you may recall, I too have diffuse systemic scleroderma, raynauds, RA, and sjogrens, and hope and pray that my hard work will one day bring me the same results. I to this point, have not been able to get anyone to prescribe any other antibiotics to me other than minocycline. I had, prior to even getting the minocycline been getting my own antibiotics from an on-line pharmacy, and was taking doxycip and doxycycline, and felt quite good during that time. I live in a very rural area of New Hampshire, and unfortunately good doctors are hard to come by, if not impossible, or at least that has been my experience. Prior to going to Boston for the confirmation of what I'd known I had for nearly a year, I saw 9 different doctors in my area that made me feel like I was nuts for telling them I believed I had scleroderma. I need to be more aggresive in my fight to get the meds that I believe will help me so much to have a much better quality of life. Thanks for listening, and thank you for your posts - they keep me going! Gail Quote Link to comment Share on other sites More sharing options...
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