Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 Hi Diane, Perhaps you should consider calling Dr. Sinnott and getting his advice. I gather he is extremely considerate about conferring with patients by phone. I've had a few flares where something in my breastbone was involved and I have to say it was more than painful -- it hurt just breathing. I think Dr. Sinnott is one of the best AP doctors out there and since your son has already seen him, I wouldn't hesitate to get in touch with him. Hugs a rheumatic My Little Boy > Hey all, > > is now 6 years old and has been on the AP for a little over a year > after going to see Dr. Sinnott in Iowa. He is taking Erythremycin (is > that spelled correctly?) every day, along with his vitamins, and usually > some flax oil, and/or fish oil. > > He complains about his chest hurting so badly he has to lie down. It > has begun to worry me. At first I thought it was just gas, or nerves, > or growing pains, but does anybody have any ideas? Could it be from the > antibiotic? What about the disease. He was never really truly > diagnosed, the doctors all sort of " banged around " a few ideas, from JRA > to Reiter's, to MCTD, to Psoratic Arthritis, or any combination of those > and others. Take your pick. > > He was doing so well, and still is, really. He still has occasional > pain (sometimes severe), but with summer coming up it should subside for > a few months at least here soon. > > We just went for an I.V. treatment in March and he says he wants to go > back. I don't know if he wants to go for the vacation element of it > (Ida Grove rocks, truly) or if he really believes he needs another I.V. > treatment and it will help his pain. > > Any and all thoughts, ideas, suggestions, prayers are, as always, > wanted, hoped for and much appreciated. > > Thank you, and God Bless you all. > > Love, Diane > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 Hi all: I'm resending an email I sent to Diane - I meant to send it to the group, but just hit Reply and later found it went to Diane only. Hope some others may find this info. to be helpful. Tim Diane: My best to you and . Here are a couple of links to sites that discuss costochondritis, a benign but painful condition that, I think, may at times be associated with MCTD. I have had chest pains for several years and, after multiple tests to rule out the usual suspects, a doctor said that costochondritis is the most likely cause. I hope these links are helpful and that has a great summer. http://www.emedicinehealth.com/costochondritis/article_em.htm http://www.emedicine.com/PED/topic487.htm Take care, Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Hi, Diane! Sally in Little Rock here. Hate to hear about 's chest pain!! Do you have " The Pill Book " ? Invaluable book for $6 or $7 you can pick up at any drug store and tells side effects of most commonly prescribed meds. Certainly, erythromycin is in there and I looked it up, and along with all the other antibiotics, the most common side effect is nausea, stomach pain, HEARTBURN, etc. I take generic minocycline and zithromax (both antibiotics) and have been helped IMMENSELY! I do wonder if I should go for the brand name as I still have to take Celebrex and am taking low-dose steroids for the past year and a half. I take Nexium in the morning for hrtburn and Tagamet at night. It's a great help! My point is that poor little should probably be taking Nexium, Tagamet (cimetidine), or one of the " stop stomach acid " meds. You can even get Tagamet and some other brands OTC these days. They are expensive, but you could at least try it to see if it helps your son. Of course, talk to a pharmacist (or your doc), because, as you prob'ly know, most meds are NOT tested on, or used on, youngsters! That way you can make sure you're giving the little guy a child's dose and not an adult's dose. Good luck, Diane and Hugs to you and ! Sally in Little Rock rheumatic My Little Boy > Hey all, > > is now 6 years old and has been on the AP for a little over a year > after going to see Dr. Sinnott in Iowa. He is taking Erythremycin (is > that spelled correctly?) every day, along with his vitamins, and usually > some flax oil, and/or fish oil. > > He complains about his chest hurting so badly he has to lie down. It > has begun to worry me. At first I thought it was just gas, or nerves, > or growing pains, but does anybody have any ideas? Could it be from the > antibiotic? What about the disease. He was never really truly > diagnosed, the doctors all sort of " banged around " a few ideas, from JRA > to Reiter's, to MCTD, to Psoratic Arthritis, or any combination of those > and others. Take your pick. > > He was doing so well, and still is, really. He still has occasional > pain (sometimes severe), but with summer coming up it should subside for > a few months at least here soon. > > We just went for an I.V. treatment in March and he says he wants to go > back. I don't know if he wants to go for the vacation element of it > (Ida Grove rocks, truly) or if he really believes he needs another I.V. > treatment and it will help his pain. > > Any and all thoughts, ideas, suggestions, prayers are, as always, > wanted, hoped for and much appreciated. > > Thank you, and God Bless you all. > > Love, Diane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Hi, Diane! Sally in Little Rock here. Hate to hear about 's chest pain!! Do you have " The Pill Book " ? Invaluable book for $6 or $7 you can pick up at any drug store and tells side effects of most commonly prescribed meds. Certainly, erythromycin is in there and I looked it up, and along with all the other antibiotics, the most common side effect is nausea, stomach pain, HEARTBURN, etc. I take generic minocycline and zithromax (both antibiotics) and have been helped IMMENSELY! I do wonder if I should go for the brand name as I still have to take Celebrex and am taking low-dose steroids for the past year and a half. I take Nexium in the morning for hrtburn and Tagamet at night. It's a great help! My point is that poor little should probably be taking Nexium, Tagamet (cimetidine), or one of the " stop stomach acid " meds. You can even get Tagamet and some other brands OTC these days. They are expensive, but you could at least try it to see if it helps your son. Of course, talk to a pharmacist (or your doc), because, as you prob'ly know, most meds are NOT tested on, or used on, youngsters! That way you can make sure you're giving the little guy a child's dose and not an adult's dose. Good luck, Diane and Hugs to you and ! Sally in Little Rock rheumatic My Little Boy > Hey all, > > is now 6 years old and has been on the AP for a little over a year > after going to see Dr. Sinnott in Iowa. He is taking Erythremycin (is > that spelled correctly?) every day, along with his vitamins, and usually > some flax oil, and/or fish oil. > > He complains about his chest hurting so badly he has to lie down. It > has begun to worry me. At first I thought it was just gas, or nerves, > or growing pains, but does anybody have any ideas? Could it be from the > antibiotic? What about the disease. He was never really truly > diagnosed, the doctors all sort of " banged around " a few ideas, from JRA > to Reiter's, to MCTD, to Psoratic Arthritis, or any combination of those > and others. Take your pick. > > He was doing so well, and still is, really. He still has occasional > pain (sometimes severe), but with summer coming up it should subside for > a few months at least here soon. > > We just went for an I.V. treatment in March and he says he wants to go > back. I don't know if he wants to go for the vacation element of it > (Ida Grove rocks, truly) or if he really believes he needs another I.V. > treatment and it will help his pain. > > Any and all thoughts, ideas, suggestions, prayers are, as always, > wanted, hoped for and much appreciated. > > Thank you, and God Bless you all. > > Love, Diane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Sally McQuie wrote: > My point is that poor little should probably be taking Nexium, > Tagamet > (cimetidine), or one of the " stop stomach acid " meds. The stomach needs that acid for the digestive process. If you are having a problem with acid reflux, try - - increasing water intake to 2-3 quarts a day minimum. - take 2 to 3 times the recommended dosage of a good probiotic. Natren's, Daily Advantage, Flora Source, etc. - raise the head of the bed 6 inches. - make sure you are eating a healthy diet with a high alkaline ratio - at least 80% alkaline to 10% acid My grandson's fiancée had this problem. She had been on medication for four years. As one med stopped working, she was given another but now none were working and the problem was worsening. Add a lot of stress to the mix and she was miserable. She started following these suggestions, except she took one probiotic capsule and hour for every waking hour for two days and then dropped back to the recommended dose. I think Dr. Mercola may have other recommendations on his website www.mercola.com Ethel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 Hi Sally, thanks for writing. I saw that side effect and wondered, since he has had chest pain even before starting the AP. I'm happy he is older now, and better able to articulate what is going on, as opposed to when it started and he was not nearly verbal, but he still is only 6 and really is not that able to describe or pinpoint his problems with much clarity. I do give him a probiotic occasionally, I have the Garden of Life brand. It's so difficult because everything has to be on an empty stomach, and this kid is constantly eating!!! Thanks for the advice to you and to all. You are invaluable to me. You are all in my prayers. God bless you, Diane Re: rheumatic My Little Boy Hi, Diane! Sally in Little Rock here. Hate to hear about 's chest pain!! Do you have " The Pill Book " ? Invaluable book for $6 or $7 you can pick up at any drug store and tells side effects of most commonly prescribed meds. Certainly, erythromycin is in there and I looked it up, and along with all the other antibiotics, the most common side effect is nausea, stomach pain, HEARTBURN, etc. I take generic minocycline and zithromax (both antibiotics) and have been helped IMMENSELY! I do wonder if I should go for the brand name as I still have to take Celebrex and am taking low-dose steroids for the past year and a half. I take Nexium in the morning for hrtburn and Tagamet at night. It's a great help! My point is that poor little should probably be taking Nexium, Tagamet (cimetidine), or one of the " stop stomach acid " meds. You can even get Tagamet and some other brands OTC these days. They are expensive, but you could at least try it to see if it helps your son. Of course, talk to a pharmacist (or your doc), because, as you prob'ly know, most meds are NOT tested on, or used on, youngsters! That way you can make sure you're giving the little guy a child's dose and not an adult's dose. Good luck, Diane and Hugs to you and ! Sally in Little Rock rheumatic My Little Boy > Hey all, > > is now 6 years old and has been on the AP for a little over a year > after going to see Dr. Sinnott in Iowa. He is taking Erythremycin (is > that spelled correctly?) every day, along with his vitamins, and usually > some flax oil, and/or fish oil. > > He complains about his chest hurting so badly he has to lie down. It > has begun to worry me. At first I thought it was just gas, or nerves, > or growing pains, but does anybody have any ideas? Could it be from the > antibiotic? What about the disease. He was never really truly > diagnosed, the doctors all sort of " banged around " a few ideas, from JRA > to Reiter's, to MCTD, to Psoratic Arthritis, or any combination of those > and others. Take your pick. > > He was doing so well, and still is, really. He still has occasional > pain (sometimes severe), but with summer coming up it should subside for > a few months at least here soon. > > We just went for an I.V. treatment in March and he says he wants to go > back. I don't know if he wants to go for the vacation element of it > (Ida Grove rocks, truly) or if he really believes he needs another I.V. > treatment and it will help his pain. > > Any and all thoughts, ideas, suggestions, prayers are, as always, > wanted, hoped for and much appreciated. > > Thank you, and God Bless you all. > > Love, Diane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 I'm kinda new here, well, today in fact. But I was confused by two different responces. It sounded like ne was talking about heartburn in the chest. The other bone or joint pain in the chest. I'm curious as to which it is, because I might have a solution depending on which it is? michael > > Hi, Diane! > > Sally in Little Rock here. > > Hate to hear about 's chest pain!! Do you have " The Pill Book " ? > Invaluable book for $6 or $7 you can pick up at any drug store and tells > side effects of most commonly prescribed meds. Certainly, erythromycin is > in there and I looked it up, and along with all the other antibiotics, the > most common side effect is nausea, stomach pain, HEARTBURN, etc. > > I take generic minocycline and zithromax (both antibiotics) and have been > helped IMMENSELY! I do wonder if I should go for the brand name as I still > have to take Celebrex and am taking low-dose steroids for the past year and > a half. I take Nexium in the morning for hrtburn and Tagamet at night. > It's a great help! > > My point is that poor little should probably be taking Nexium, Tagamet > (cimetidine), or one of the " stop stomach acid " meds. You can even get > Tagamet and some other brands OTC these days. They are expensive, but you > could at least try it to see if it helps your son. Of course, talk to a > pharmacist (or your doc), because, as you prob'ly know, most meds are NOT > tested on, or used on, youngsters! That way you can make sure you're giving > the little guy a child's dose and not an adult's dose. > > Good luck, Diane and Hugs to you and ! > > Sally in Little Rock Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 Try Aloe Vera juice for the stomach problem. We used nexium for awhile and then slowly went over to the Aloe Vera and stoppe the Nexium. My little girl was on a combo of Prednisone, Indocin, tylenol and biaxin for awhile. This is bound to cause some stomach problems. Can't remember the exact name " georges desert aloe vera " comes to mind. Like drinking water. 4 ounceds 2x a day, helps the stomach lining. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Hey, Diane! Sally in Little Rock here. HATE to hear that your little boy takes his meds on an empty stomach. Used my pill book again and it says ONLY erythromycin base and stearate forms are taken on an empty stomach, the other forms can be taked WITHOUT regard to food or meals (grapefruit juice being an exception.) Certainly, a probiotic does not need to be taken on an empty stomach; in fact, mine suggest taking it with meals. And, you say, poor little had tummy problems before the RA, right? Well, so did I and some of the best advice I ever got from my DC area rheumatologist was to take my meds WITH FOOD!! She said that most of her RA patients had tummy problems anyway and she didn't care what the pharmacist, docs, pill books said, she did not want her patients' tummies to get worse. So, in my opinion, if there is any way possible, think about eating along with taking his meds. Makes it a lot easier to remember and take the medicine when you can enjoy food with it. Sounds like he loves to eat, so that's definitely a head start . Hugs to you both, Sally in Little Rock rheumatic My Little Boy > Hey all, > > is now 6 years old and has been on the AP for a little over a year > after going to see Dr. Sinnott in Iowa. He is taking Erythremycin (is > that spelled correctly?) every day, along with his vitamins, and usually > some flax oil, and/or fish oil. > > He complains about his chest hurting so badly he has to lie down. It > has begun to worry me. At first I thought it was just gas, or nerves, > or growing pains, but does anybody have any ideas? Could it be from the > antibiotic? What about the disease. He was never really truly > diagnosed, the doctors all sort of " banged around " a few ideas, from JRA > to Reiter's, to MCTD, to Psoratic Arthritis, or any combination of those > and others. Take your pick. > > He was doing so well, and still is, really. He still has occasional > pain (sometimes severe), but with summer coming up it should subside for > a few months at least here soon. > > We just went for an I.V. treatment in March and he says he wants to go > back. I don't know if he wants to go for the vacation element of it > (Ida Grove rocks, truly) or if he really believes he needs another I.V. > treatment and it will help his pain. > > Any and all thoughts, ideas, suggestions, prayers are, as always, > wanted, hoped for and much appreciated. > > Thank you, and God Bless you all. > > Love, Diane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Sue, I addition to A/P (with Minocin and Clindamycin being the cornerstone of that Treatment) which is excellent, there is also LDN (Low Dose Naltrexone)at probably 3 mg per day (Max 4.5 mg/day). I have heard that some patients have had great success using LDN for Scleroderma as an immune modulator. Its very powerful and safe. You can listen to the speakers talking at the last LDN conference held at USC in OCT2008, including Dr Burt Berkson MD/PHD (just google LDN Conference 08). I believe the most knowledgeable phamcacist on LDN is in Florida (In Boca Rotan)see www.skipspharmacy.com , and maintain a database of thousands of doctors across North America that have presribed LDN for their patients, and Skip is very knowledgeable and helpful (and you can listen to his hour long speech at the last conference). Copied from his website, Contact info.is as follows: Contact Address & Phone Skip's Pharmacy 21000 Boca Rio Rd Suite A-29 Boca Raton, Florida 33433 561-218-0111 800-553-7429 Fax: 561-218-8873 credits Emails General info: info@... Clinical Questions: skipthepharm@... Wholesale Questions: phil@... Supplement,rescue, message board questions: cyndi@... Webmaster info: adam@... Anyway Sue, my wife also takes Minocin and LDN, and both are helping her (She has DM). Both drugs work differently, but I beleive in a synergistic fashion. Its wise to cover all the bases. -Best of luck with your little boy -Jim and (in Canada) > rheumatic My little boy > > > > My 13 year old little boy was recently diagnosed by his pediatrician with > > scleroderma. We live in Florida and we are going to our first pedi > > rheumatologist appointment on Wednesday and I am so scared. I found out > > about the AP therapy through roadback.org and I am conversing with many > > people on their bulletin board. I was just wondering if anyone on here has > > a child with scleroderma and how you are coping with all of this and if > > the therapy has worked for you. Any words of wisdom would certainly be > > appreciated. > > > > Sue > > > > > > > > ------------------------------------ > > > > To unsubscribe, email: rheumatic-unsubscribe@...! Groups > > Links > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Sue  My thoughts are with you and your little boy for healing and progress.  Ken. From: jtubman77 <jtubman@...> Subject: rheumatic Re: My little boy rheumatic Date: Thursday, April 23, 2009, 8:13 PM Sue, I addition to A/P (with Minocin and Clindamycin being the cornerstone of that Treatment) which is excellent, there is also LDN (Low Dose Naltrexone)at probably 3 mg per day (Max 4.5 mg/day). I have heard that some patients have had great success using LDN for Scleroderma as an immune modulator. Its very powerful and safe. You can listen to the speakers talking at the last LDN conference held at USC in OCT2008, including Dr Burt Berkson MD/PHD (just google LDN Conference 08). I believe the most knowledgeable phamcacist on LDN is in Florida (In Boca Rotan)see www.skipspharmacy. com , and maintain a database of thousands of doctors across North America that have presribed LDN for their patients, and Skip is very knowledgeable and helpful (and you can listen to his hour long speech at the last conference). Copied from his website, Contact info.is as follows: Contact Address & Phone Skip's Pharmacy 21000 Boca Rio Rd Suite A-29 Boca Raton, Florida 33433 561-218-0111 800-553-7429 Fax: 561-218-8873 credits Emails General info: infoskipspharmacy (DOT) com Clinical Questions: skipthepharm@ aol.com Wholesale Questions: philskipspharmacy (DOT) com Supplement,rescue, message board questions: cyndi@skipspharmacy .com Webmaster info: adamskipspharmacy (DOT) com Anyway Sue, my wife also takes Minocin and LDN, and both are helping her (She has DM). Both drugs work differently, but I beleive in a synergistic fashion. Its wise to cover all the bases. -Best of luck with your little boy -Jim and (in Canada) > rheumatic My little boy > > > > My 13 year old little boy was recently diagnosed by his pediatrician with > > scleroderma. We live in Florida and we are going to our first pedi > > rheumatologist appointment on Wednesday and I am so scared. I found out > > about the AP therapy through roadback.org and I am conversing with many > > people on their bulletin board. I was just wondering if anyone on here has > > a child with scleroderma and how you are coping with all of this and if > > the therapy has worked for you. Any words of wisdom would certainly be > > appreciated. > > > > Sue > > > > > > > > ------------ --------- --------- ------ > > > > To unsubscribe, email: rheumatic-unsubscri be@...! Groups > > Links > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Thank you everyone. We see the AP doctor today and I will ask about the LDN -- Sue From: rheumatic [mailto:rheumatic ] On Behalf Of Ken Pearson Sent: Friday, April 24, 2009 2:04 AM rheumatic Subject: Re: rheumatic Re: My little boy Sue My thoughts are with you and your little boy for healing and progress. Ken. From: jtubman77 <jtubman@... <mailto:jtubman%40hotmail.com> > Subject: rheumatic Re: My little boy rheumatic <mailto:rheumatic%40> Date: Thursday, April 23, 2009, 8:13 PM Sue, I addition to A/P (with Minocin and Clindamycin being the cornerstone of that Treatment) which is excellent, there is also LDN (Low Dose Naltrexone)at probably 3 mg per day (Max 4.5 mg/day). I have heard that some patients have had great success using LDN for Scleroderma as an immune modulator. Its very powerful and safe. You can listen to the speakers talking at the last LDN conference held at USC in OCT2008, including Dr Burt Berkson MD/PHD (just google LDN Conference 08). I believe the most knowledgeable phamcacist on LDN is in Florida (In Boca Rotan)see www.skipspharmacy. com , and maintain a database of thousands of doctors across North America that have presribed LDN for their patients, and Skip is very knowledgeable and helpful (and you can listen to his hour long speech at the last conference). Copied from his website, Contact info.is as follows: Contact Address & Phone Skip's Pharmacy 21000 Boca Rio Rd Suite A-29 Boca Raton, Florida 33433 561-218-0111 800-553-7429 Fax: 561-218-8873 credits Emails General info: infoskipspharmacy (DOT) com Clinical Questions: skipthepharm@ aol.com Wholesale Questions: philskipspharmacy (DOT) com Supplement,rescue, message board questions: cyndi@skipspharmacy .com Webmaster info: adamskipspharmacy (DOT) com Anyway Sue, my wife also takes Minocin and LDN, and both are helping her (She has DM). Both drugs work differently, but I beleive in a synergistic fashion. Its wise to cover all the bases. -Best of luck with your little boy -Jim and (in Canada) > rheumatic My little boy > > > > My 13 year old little boy was recently diagnosed by his pediatrician with > > scleroderma. We live in Florida and we are going to our first pedi > > rheumatologist appointment on Wednesday and I am so scared. I found out > > about the AP therapy through roadback.org and I am conversing with many > > people on their bulletin board. I was just wondering if anyone on here has > > a child with scleroderma and how you are coping with all of this and if > > the therapy has worked for you. Any words of wisdom would certainly be > > appreciated. > > > > Sue > > > > > > > > ------------ --------- --------- ------ > > > > To unsubscribe, email: rheumatic-unsubscri be@...! Groups > > Links > > > > > > > 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.