Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 Hi: I do and it is mainly in my wrists and forearms. I have notice that if I deviate from my diet every so slightly that the burning returns. Mado rheumatic questions I am currently on Minocin 100mg 2 times a day. I have been on this dosage for 2 weeks and seem to be feeling somewhat better in some areas, but now my feet are burning on the top. I need to keep ice packs on them as much as possible. My doctor told me today over the phone that my RA and Lupus tests were still negative but with my symptoms, he believes that I do have beginning stages of RA. My x rays seem to confirm that I have RA changes. Anyone else on Minocin have these problems with burning feet and hands stinging? caversa@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 I can't answer much about your burning feet problem but I thought I'd mention that taking 100 mg. of Minocin 2x every day is a pretty high dosage. The standard protocol dosage is 100 mg. 2X MWF. If you are taking more than the protocol dosage, you are increasing the chance of encountering side effects and perhaps this is one of them. a Peden > caversa@... wrote: > > I am currently on Minocin 100mg 2 times a day. > > I have been on this dosage for 2 weeks and seem to be feeling > somewhat better in some areas, but now my feet are burning on the > top. I need to keep ice packs on them as much as possible. > > My doctor told me today over the phone that my RA and Lupus tests > were still negative but with my symptoms, he believes that I do have > beginning stages of RA. My x rays seem to confirm that I have RA > changes. > > Anyone else on Minocin have these problems with burning feet and > hands stinging? > > caversa@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 Bev, I know that seems to be the new trend and I gather it stems from the fact that some of the new studies were conducted using that dosage. However, we were discussing this very topic last night at my local support group meeting and the consensus was that if you exceed the dose recommended by Dr. Brown, you increase the risk of side effects in the long term without much substantial benefit to your recovery, plus you may suffer a greater herx reaction by starting out at a higher dosage. They felt it was better to err on the side of caution, particularly since most of us are basically self-treating without the benefit of trained AP doctors to watch over us and help if we develop problems. You know me, I'm medication-paranoid so I don't like to take more than Dr. Brown's protocol recommended. :} Hugs, a Briarwood wrote: > > a, the dose that seems to be perscribed these days is 100 - 2 times a > day. That is what I am taking too. > > Bev > > Re: rheumatic questions > > > From: a Peden <paula.peden@...> > > > > I can't answer much about your burning feet problem but I thought I'd > > mention that taking 100 mg. of Minocin 2x every day is a pretty high > > dosage. The standard protocol dosage is 100 mg. 2X MWF. If you are > > taking more than the protocol dosage, you are increasing the chance of > > encountering side effects and perhaps this is one of them. > > a Peden > > > > > caversa@... wrote: > > > > > > I am currently on Minocin 100mg 2 times a day. > > > > > > I have been on this dosage for 2 weeks and seem to be feeling > > > somewhat better in some areas, but now my feet are burning on the > > > top. I need to keep ice packs on them as much as possible. > > > > > > My doctor told me today over the phone that my RA and Lupus tests > > > were still negative but with my symptoms, he believes that I do have > > > beginning stages of RA. My x rays seem to confirm that I have RA > > > changes. > > > > > > Anyone else on Minocin have these problems with burning feet and > > > hands stinging? > > > > > > caversa@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 Bev, It is great to have a local support group, makes you feel you're going about the right treatment when you meet people in person and hear their stories. Some of the stories from people who first pursued the traditional meds and are now suffering the consequences are pretty sobering and make me more determined that this is the way to go. We also had a discussion about how you can improve great guns, get really optimitic, then reach a plateau in your treatment where you don't seem to go anywhere and can get discouraged. They said it's important to try not to get discouraged and just keep plugging along. And you must be doing pretty good if you can even squat or kneel down with some padding, even if you do have trouble getting up. That's better than I could do, honey, so keep up the good work. :} Hugs, a Briarwood wrote: > > a, > I know it is hard to know what to do. I am glad you are going to the > support group. I just wish we had one. Someone was saying recently about > changing the dose to the MWF from every day and such an improvement, maybe > it was Micki with her mom. I am actually thinking of doing that. I have > been almost a year on the AP and I thought I would be better than I am. In > the morning I am really stiff but it works out during the next half hour or > so. But my knees are bad in that I can't get up when I squat down. It > was a riot washing the floor yesterday trying to get up. And I have these > stupid looking rubber knee pads that fasten around your knees with velcro. > I look like Wayne Gretzgy suited up when I wash the floor. But I can't > bear to get on my knees without padding. I would love to know why. > > Bev > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 Dosage effects can vary alot for many different folks. I know the protocol here is MWF, but I took it daily for a year (100mg 2x/day) and had no problems whatsoever. And I started at that dosage. O'Dell's study uses the same dosage. I think the group here would say that at that dosage level, perhaps there is a sensitivity built up to the drug and for a drug that has to be taken for as many years as this one, that is not a good thing. I don't know where O'Dell stands on that viewpoint. I dropped my dosage back to MWF about 3 months ago, but that didn't seem to help at all, nor did the Zithromax I took, so I stopped the Zithro and started the mino back up on a daily basis. In response to burning, there have been times when it felt like my hands were burning - not a pleasant feeling. Mark Re: rheumatic questions > From: a Peden <paula.peden@...> > > I can't answer much about your burning feet problem but I thought I'd > mention that taking 100 mg. of Minocin 2x every day is a pretty high > dosage. The standard protocol dosage is 100 mg. 2X MWF. If you are > taking more than the protocol dosage, you are increasing the chance of > encountering side effects and perhaps this is one of them. > a Peden > > > caversa@... wrote: > > > > I am currently on Minocin 100mg 2 times a day. > > > > I have been on this dosage for 2 weeks and seem to be feeling > > somewhat better in some areas, but now my feet are burning on the > > top. I need to keep ice packs on them as much as possible. > > > > My doctor told me today over the phone that my RA and Lupus tests > > were still negative but with my symptoms, he believes that I do have > > beginning stages of RA. My x rays seem to confirm that I have RA > > changes. > > > > Anyone else on Minocin have these problems with burning feet and > > hands stinging? > > > > caversa@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Hi, You have three very serious mycoplasmas. The middle one is called penetrans. All are serious but treatable. You might want to go to Dr. Nicolson's website and read up on them. http://www.immed.org You should begin to recover gradually in the next several months. Best wishes to you. a Carnes rheumatic Questions > From: Bob Fain <BobFain@...> > > Dear AP family, I have been so glad to have found you but never so much > as right this minute. I probably sound like a blabbering idiot to you; > however, I need some enlightenment. I am scared. I just spoke with > Doctor Sinnott for the followup after getting the primary lab work in > and he said my RA was negative, Scleraderma is positive (which I already > knew) but that he was a bit surprised by the micoplasma report. Seems > instead of just one, which is expected, I showed three. They are > hominus, permatans, and pneumonic. He surprise came through really > clear which put me in a state of terror. I don't even know if I spelled > those correctly much less know what they are indicative of. I was so > thrown that I forgot to ask all the questions I had on my list right in > front of me. He is sending me my RX for the monthly IV so I can get > started on that and I will return to Iowa in June for another round. In > the meantime, he kept me at 100 mg. Minocin MWF. I already wrote an > e-mail to to see if she understands these micoplasmas but if any > of you do, please let me know. I just need to really believe there is > hope. I don't want to give us sugar and caffeine for nothing. (Just > trying to remain humorus) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2000 Report Share Posted February 21, 2000 Hello, Back! I am 100 mg/Minocin MWF and I have a small amount of discoloration. It may become more exagerated with time but so far, it is not bad. I have taken the advice of others here and take Vitamin K which may be the reason it is so light and comes and fades out a lot. Some of you here today have had an interesting conversation about the pros and cons of Minocin/minocycline/blue spots vs none. I can tell you that I DO understand where you are coming from. I am 53, I am not 35 but I DO remember how I felt when I was 35. In fact, if you guys remember, I was vain enough to have the implants, which may or may not be the reason I am sitting here today with the scleraderma. I am STILL vain and I am not sure if it ever lessens. What does happen, and I only can speak for myself, is that I have begun to see beauty differently. Perhaps that is some failsafe personality trait which clicks in as we grow older and we obviously begin to lose what society sees as " Looks. " Because I have scleraderma and am looking at a disease which has devestating effects on looks and a high mortality rate, my reality perspective is somewhat different from some of you. If I could remain 53, healthy and supremely gorgeous, you bet I would jump on it! But time marches on and to be truthful, if I were 53 and looked 33 and was gorgeous, I am not sure I would fit in with anyone my age and with my own interests. Growing older can be kinder. So, anyways Gang, the reason for these comments is to let you know I am not sitting from some exhaulted position in judgement of you when I say I can turn polka dotted and I won't care. But the amount of care in the face of anything else kind of pales. But for you who are not facing the morbidity issue, I am going to enjoy those pale faces and bodies in the photo album and I know you will lovingly enjoy my polka dots! LOL caversa@... wrote: > I take Minocin 200mg a day and I am wondering if it is causing a skin > discoloration on you? I do lots of yard work around my house when I > am not in pain and I haven't noticed any brown spots yet. I have been > taking Minocin since Sept. 99 and I am just now feeling better. I am > having more good days than bad ones. I live in Northeast Texas > (Atlanta) and the sun shines brightly all year long!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Hola Felicia from a fellow Nuevo Mejicano ( I live in Farmington ) : I will do my best to address your questions. I am not sure how long you have been active in the group , but as you said, a lot of your questions are answered on the web site. The basic proposition of Dr. Brown (and by extension, most of us undergoing AP) is that the various autoimmune diseases are caused by mycoplasma bacteria. These are primitive bacteria that are smaller than other types of germs , and are characterized by having no cell wall. They invade our cells and take over the mechanisms. That is why they are very difficult to kill - because they become integral to our own cells. It is also why our immune system attacks our own cells as the immune cell lymphocytes see the mycos as foreign bodies but cannot distinguish what part to kill , so they wipe out our cells along with the mycos. This is what causes us to respond with inflammation -- a reaction to the attack from the immune system. As to ongoing treatment, the mycos are extremely hard to kill and as Geoff said, the best we do at this point is put them in remission where our immune system can control them. My understanding from others postings the past year or so, is that those with long standing , severe symtoms usually need more agressive AP treatment and have a more severe HERX response to the initial treatment. Those like myself who started in the first year of diagnoses do not generally react as badly. As far as I can tell , I never had a HERX from the antibiotics -- lucky I guess. Anyhow, the general consensus is one must continue to take a maintenance dose of antibiotics long after the symtoms stop - maybe for life until a better antibiotic is found ( or other treatment even better ) that completely kills the little bastards ( mycos ). Hope this helps..........Dean. rheumatic questions > Hullo, > My questions are probably covered in the FAQ, but I am curious as to > listmembers personal experience. The medical line is that folks who have > had certain bacterial infections then may develop the various forms of > arthritis. The implication of ongoing antibiotics is that it is not > possible to kill the bacteria? Does the length of time of being infected > affect the severity of the response? Thank you for your help. felicidades, > Felicia > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Hello (sorry - I don't know your first name) > l have been on AP for over 3 years with minimal improvement. About 20% or a little more, not much. l take 50mgs of doxy every other day as l am hypersensitive and cannot take minocin. l have tried to go up but cannot, this is all my body can tolerate. What happens if you put the dose up? If you get increased pain and symptoms then that is a good sign that the antibiotic is finding a target - it's called the Jarisch-Herxheimer reaction. Other things to check: (from our FAQ at rheumatic.org/faq.htm) a. Laboratory tests should be run again. Often improvement in these tests will precede improvement of symptoms. b. If you are on a generic minocycline, change manufacturers or switch to the brand name. Patients have discovered that not all generic minocycline (or doxycycline) is therapeutically equivalent. Many physicians prescribe the brand name to avoid this risk. c. Try a different antibiotic. All patients may not respond to minocycline (Minocin). d. Try one antibiotic in the morning and a different one at night, or sequence them taking one for six weeks and then switching to another for six weeks. e. If your disease is severe, long standing or very resistant, and you are only on oral antibiotics, you will need to add intravenous therapy. f. Look for other infections in the sinuses, allergies, root canals, intestinal tract, etc. that may be impeding your progress and must be addressed for optimum benefit from this therapy. The first area to check is the intestinal tract for candida overgrowth and leaky gut. There are special labs that perform these tests - Immuno-Science Lab in Beverly Hills, CA. (http://www.immuno-sci-lab.com), and Antibody Assay Laboratories in Santa Ana, CA. (phone -800-522-2611) run candida antibody tests, and Great Smokies Lab runs the lactulose mannitol test for leaky gut. (http://www.gsdl.com or http://www.greatsmokies-lab.com) g. Did you have an elevated ASO titer? If so, it must be treated as well. The strep organism is difficult to eradicate and even after the ASO titer returns to normal, the patient should be monitored for some time for recurrence. The goal of the therapy is to remove antigen wherever it may be found in the body in order to achieve optimum benefit from this therapy. h. Are you deficient in antibody? Perhaps intravenous immunoglobulin is necessary. i. Did your doctor have the mycoplasma test run? It should be run for the entire panel and not just for M. pneumoniae. The first test may be negative if the immune system is too weak to mount an antibody attack to the organism. Therefore, it is important to repeat the test within 3 to 6 months. If it is still negative, the medication should be changed. The tetracycline antibiotic still works in some instances of a negative reading. If the cause is viral the antibiotic therapy may fail. Additionally, the cause could be streptococcus infection compounded with a mycoplasma infection or vice versa. > it clearly states anyone without a rheumatoid factor will do well and better than someone who does have one. That leaves a lot of us in a difficult position with RF. l have also heard other doctors say that people with sero negative/reactive arthritis get the most out of the AP treatment. People with seronegative disease often respond faster. That's all it means, that those with seropositive disease may take longer to respond, not that they don't respond at all. There are hundreds of people in this group doing well on the antibiotics who have seropositive disease. >l cannot find any documentation or statistics regarding the AP treatment, only testimonials. Dr. Brown quoted around 80% of his patients as responding to the antibiotics. His practice consisted mainly of long-term and severe patients who had been deteriorating on a variety of drugs for many years. Our doctors currently using antibiotic therapy quote up to 90% response, especially when the IVs are used. If you look at rheumatic.org/studies.htm you will see a list of some of the studies done and, at the bottom, a paper of Dr. Brown's where he quotes the results obtained from 98 patients with 451 patient years of follow up. >l have read the MIRA trials and O'Dell studies, and if you do not take at least 200mgs a day of minocin, apparently you do not have much of a chance of getting well. lt seems to me that only a few go into remission and the majority get improvement but that could be anywhere from 1% and up. The trials used 200mg per day as that is the way antibiotics are mostly prescribed these days. There is a lot of political history around these trials, and none of the experienced doctors using Dr. Brown's protocols were consulted as to the dose. Dr. Brown said that the dose you tolerate best is also the best therapeutic dose for you. That said, it's necessary to find the right antibiotic and dose for each patient and to eliminate other problems areas as outlined above. This can take some detective work to get it right. Let us know what information you need, Chris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 When I was intially sick with RA (very sick...nearly wheelchairbound after having my third child at age 34) I couldn't tolerate even 50mg of minocin once a week nor doxy or cipro and any macrolide in any amount. Finally we tried intermuscular injections of Bicillin which is a penicillin.It is given in high (but not toxic) doses once or twice a week. My pain level decreased half to perhaps 3/4 and after a month of injections I was able to tolerate the doxy or other macrolides with out a problem It may be that you have co-infections and you are hitting one form but not the other (like me). Hope this helps. let me know if you or your doctor need more info on this protocal. kathy Re: rheumatic Questions > > Hello (sorry - I don't know your first name) > > > l have been on AP for over 3 years with minimal improvement. > About 20% or a little more, not much. l take 50mgs of doxy every > other day as l am hypersensitive and cannot take minocin. l have tried > to go up but cannot, this is all my body can tolerate. > > What happens if you put the dose up? If you get increased pain and > symptoms then that is a good sign that the antibiotic is finding a target > - it's called the Jarisch-Herxheimer reaction. > > Other things to check: (from our FAQ at rheumatic.org/faq.htm) > > a. Laboratory tests should be run again. Often improvement in these tests > will precede improvement of symptoms. > b. If you are on a generic minocycline, change manufacturers or switch to > the brand name. Patients have discovered that not all generic minocycline > (or doxycycline) is therapeutically equivalent. Many physicians prescribe > the brand name to avoid this risk. > c. Try a different antibiotic. All patients may not respond to minocycline > (Minocin). > d. Try one antibiotic in the morning and a different one at night, or > sequence them taking one for six weeks and then switching to another for six > weeks. > e. If your disease is severe, long standing or very resistant, and you are > only on oral antibiotics, you will need to add intravenous therapy. > f. Look for other infections in the sinuses, allergies, root canals, > intestinal tract, etc. that may be impeding your progress and must be > addressed for optimum benefit from this therapy. The first area to check is > the intestinal tract for candida overgrowth and leaky gut. There are special > labs that perform these tests - Immuno-Science Lab in Beverly Hills, CA. > (http://www.immuno-sci-lab.com), and Antibody Assay Laboratories in Santa > Ana, CA. (phone -800-522-2611) run candida antibody tests, and Great Smokies > Lab runs the lactulose mannitol test for leaky gut. (http://www.gsdl.com or > http://www.greatsmokies-lab.com) > g. Did you have an elevated ASO titer? If so, it must be treated as well. > The strep organism is difficult to eradicate and even after the ASO titer > returns to normal, the patient should be monitored for some time for > recurrence. The goal of the therapy is to remove antigen wherever it may be > found in the body in order to achieve optimum benefit from this therapy. > h. Are you deficient in antibody? Perhaps intravenous immunoglobulin is > necessary. > i. Did your doctor have the mycoplasma test run? It should be run for the > entire panel and not just for M. pneumoniae. The first test may be negative > if the immune system is too weak to mount an antibody attack to the > organism. Therefore, it is important to repeat the test within 3 to 6 > months. If it is still negative, the medication should be changed. The > tetracycline antibiotic still works in some instances of a negative reading. > If the cause is viral the antibiotic therapy may fail. Additionally, the > cause could be streptococcus infection compounded with a mycoplasma > infection or vice versa. > > > it clearly states anyone without a rheumatoid factor will do well and > better than someone who does have one. That leaves a lot of us in a > difficult position with RF. l have also heard other doctors say that > people with sero negative/reactive arthritis get the most out of the AP > treatment. > > People with seronegative disease often respond faster. That's all it > means, that those with seropositive disease may take longer to respond, > not that they don't respond at all. There are hundreds of people in this > group doing well on the antibiotics who have seropositive disease. > > >l cannot find any documentation or statistics regarding the AP treatment, > only testimonials. > > Dr. Brown quoted around 80% of his patients as responding to the > antibiotics. His practice consisted mainly of long-term and severe > patients who had been deteriorating on a variety of drugs for many > years. Our doctors currently using antibiotic therapy quote up to 90% > response, especially when the IVs are used. If you look at > rheumatic.org/studies.htm you will see a list of some of the studies done > and, at the bottom, a paper of Dr. Brown's where he quotes the results > obtained from 98 patients with 451 patient years of follow up. > > >l have read the MIRA trials and O'Dell studies, and if you do not take at > least 200mgs a day of minocin, apparently you do not have much of a chance > of getting well. lt seems to me that only a few go into remission and the > majority get improvement but that could be anywhere from 1% and up. > > The trials used 200mg per day as that is the way antibiotics are mostly > prescribed these days. There is a lot of political history around these > trials, and none of the experienced doctors using Dr. Brown's protocols > were consulted as to the dose. Dr. Brown said that the dose you tolerate > best is also the best therapeutic dose for you. That said, it's necessary > to find the right antibiotic and dose for each patient and to eliminate > other problems areas as outlined above. This can take some detective work > to get it right. > > Let us know what information you need, > Chris. > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 ---Hi Tom, I am not quite sure what to tell you about the sd type symptoms or your sticky skin, but when I had brochitis, Dr. T. had me on Biaxin and took me off of the Minocin. I felt like I slipped a bit too while I was off. My measurements at hand therapy showed this as well, but I bounced back right away after going back to my normal schedule of Minocin. I was told that it is a stomach thing. They didn't want to put so many tough things in your body at once and because it is so short term it is okay to go off of the Minocin. Hope this helps relieve some worry. Good luck with figuring out the skin stuff though. Don't rest till you get some answers!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Hi Tom, I guess my first thought is that Dr. Franco is about the best there is, so I would trust his judgement on the antibiotics, doses and diagnosis. My daughter Janene has systemic scleroderma/mixed connective tissue disease/RA/Raynaud's/fibromyalgia et al. Your description of your sticky skin does sound very much like her forearms were (she doesn't have it anymore due to antibiotic therapy). You may have mixed connective tissue disease where there are symptoms of a number of these diseases mixed together. Janene doesn't have the nail fold capillary marker either - or the scleroderma marker SCL-70. The good thing is that, even if you do have symptoms of the other rheumatic diseases mixed in with the Reiters and Sjogrens, the treatment is similar. You will have ups and downs with symptoms for a long time - my daughter has been on antibiotics for nearly five years now, doing well, but it has been a very long, rocky road with a fair way to go even now. I'd have a chat to Dr. Franco about your concerns. Yes, you would normally stop Minocin while taking the Augmentin - once the Augmentin is finished then you'd restart the Minocin. You won't lose anything by stopping the Minocin for a few days. Dr. Brown said that the antibiotic can be stopped for up to four weeks without losing ground. Keep us posted, Chris. >Hello, > >My name is Tom and I'm a poster from the RBF board. > >I have Reiter's Syndrome, Sjogrens and some other funny things going on with >my skin. Had a nail fold capillary exam done last week that showed no signs >of Scleroderma, yet I have a chronic tightness feeling in my face and sticky >skin. I can literally stick a pencil to my forearm and hold it out sometimes >without it falling! > >I have been on AP since April 2001. I see the Riverside, CA AP doctor. After >about 7 months on AP (minocin MWF 200MG/day), my Reiter's Syndrome symptoms >and my Sjogren's symptoms almost disappeared. That's when my skin tightening >experiences started. > >My doc put me on 200MG minocin, 7 days in March 2002. Symptoms never really >got worse in all this time but never got better. My doc is 99.9% sure it's >not Scleroderma, however I am still concerned. > >Last week I came down with a pretty bad sinus infection. My AP doc put me on >1500MG Augmentin (Amoxicillin) daily and stopped the Minocin until the >infection goes away. Maybe 2 weeks then I'm back on the Minocin. Does this >seem okay to do? I am under the care of one of the best AP docs, so I am >trying not to be too paranoid. > >However, I am 5 days off of Minocin now and concerned. Seems like my skin has >gotten even stickier - I can't even type on my keyboard without my wrists >sticking to it - very uncomfortable. > >Mine is a strange journey.....just wondering if anyone has any similar >happenings or insights. > >Thanks for your help! > >Tom Kenney >Irvine, CA > > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Hi Tom! Geoff here. You wrote: > I have Reiter's Syndrome, Sjogrens and some other funny things > going on with my skin. Had a nail fold capillary exam done last > week that showed no signs of Scleroderma, yet I have a chronic > tightness feeling in my face and sticky skin. I can literally stick > a pencil to my forearm and hold it out sometimes without it falling! > > I have been on AP since April 2001. I see the Riverside, CA AP > doctor. After about 7 months on AP (minocin MWF 200MG/day), > my Reiter's Syndrome symptoms and my Sjogren's symptoms almost > disappeared. That's when my skin tightening experiences started. > (snip) > > However, I am 5 days off of Minocin now and concerned. Seems like > my skin has gotten even stickier - I can't even type on my keyboard > without my wrists sticking to it - very uncomfortable. If you're seeing Franco, you're in good hands; but anyone can be mistaken. There are a few things to keep in mind: (1) scleroderma involves more than just the skin, such as organs, etc.; (2) we heal (not feel better -- HEAL) from inside-out, LIFO (Last In - First Out, i.e., newest symptoms resolve first, oldest last.) If the disease is indeed moving " outward " that could well be an encouraging sign, but healing often involves increasing, not decreasing, levels of discomfort. The next phase in the process can be quite difficult to understand, for it goes from being outward to inward but less serious, the constant is the gravity of the instant case: is it more or less dangerous in the new state compared with the old? If my shoulders (joints) are no longer immobile, but now my skin itches terribly, am I healing or worsening? I would argue that healing is taking place and to seek symptomatic relief of the itching would be extremely ill advised. Issues of the skin are (generally) less serious than issues of the organs, etc. For a better understanding of this phenomenon, refer to Vithoulkas' excellent 3D graphic conal representation of the Mental, Emotional and Physical sections and planes of danger. As one moves up and in on the cone the situation becomes more dire. FWIW, skin eruptions by themselves are very low & outward, but palliation (relief) by Rx drugs *normally* drives the illness deeper, although the patient " feels " better they are in fact being made more ill and worse, ill in ways that may not become apparent for some time, as in up to years. BTW, have you mentioned the " stickiness " of your skin to Franco, and have you used the Epsom salt / hydrogen peroxide baths? It does sound as if your skin is eliminating something, the baths can be very helpful in aiding your skin to pass whatever your body is trying to excrete. Geoff soli Deo gloria www.HealingYou.org - Your nonprofit source for remedies and aids in fighting these diseases, information on weaning from drugs, and nutritional kits for repairing damage; 100% volunteer staffed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Sure, here's two web sites - one gives an overview of reactive arth., and or reiters syndrome, http://www.emedicine.com -- for this first one type in reactive arthritis and it will take you to the page. The other tells the history of that boat load of people whom I mentioned in my first post. http://aafp.org/afp/990800ap/499.html gincur@... wrote: > Hi , > > Read your post. What type of a test isHLA B27, blood test/etc??? > Could you post the Reactive Arthritis web sites address? l read where > the AP therapy works the best for those that have no rheumatoid factor > and reactive/sero negative arthritis. > > Thanks > > Ginger > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 > Hi all. I am new to this whole speech thing. I had my son , almost > 25 months evaluated because he was not talking yet. Of course, everyone > recommended speech therapy and he has been receiving it for probably a > month now. However, my only concern is does he have apraxia? No one can > tell me and everyone says " It's too early too know. " Is this true and > does anyone know any ST's in ville Florida that may be able to > help me out? Thanks again. Kristi Dvorak Kristi, I just joined today so can't be all that helpful, but I am from FL (Tampa). My son was sent to EIP by his pediatrician at 22 months, and we started speech therapy pretty much immediately. Both the EIP clinician and the one from the therapists office both diagnosed severe developmental apraxia of speech. is now 30 months and has been in therapy for 7 months. Although we the family think he has made great strides, anyone else would still consider him to not be talking. He only says vowels, unless he is saying Mama or NO - those come out clear as day!! But when we started he didn't even attempt words - so vowels are better than nothing. Is your son getting therapy through the EIP progam? My daughter who is 5, and both go to the same speech therapist. I have to pay $80/week for Maddie and the state pays for . We've already had his transition meeting with ChildFind (school district), even though he doesn't turn 3 until the very end of November. They THINK he'll be in full day preschool, that seems too long. I'll probably only have him there in the mornings when they actually do the speech therapy and pick him up at lunch time. He is a pretty well adjusted kid so doesn't need the extra socialization time. -- Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 > Hey guys, it has been awhile since I have posted anything here but I > have a few questions. We found an awesome chiropractor for the > children. I have never seen anything like what he does. A lot of chiropractors do muscle testing. Also called kineseology if you want to search on it. There are lots of different ways to do it. > He did > muscle testing using different colors which was odd but today he did > testing using these little vials with different things in them. Yep. I don't know about the colors I've heard of the vials. NAET uses little vials for muscle testing. He might have been doing that, or something else. > He > would have my daughter put her finger on each of the vials while he > was pushing on her arm. He told me that her cell function was all > messed up and that we needed to fix the pathways before doing > chelation. He had her hold different vials that he said " fixed the > pathways " . He had no access to any of her medical records, and I > had never mentioned any of her deficencies to him. From what he did > today he told me that she had IgG and IgE deficency (which showed on > her blood work a few months ago from her ped) said that she had a > problem with to much copper, aluminum, and manganese. All of these > things were elevated when we had her tested from another dr. what kind of test was it that the other doctor did? If it is hair copper that is high, then zinc and molybdenum (sp) are useful. > He did > this all by touching different points and moving her arm. He gave > me this for her to take: > Ionized Molybdenum- 4 drops once a day for 6 weeks, said that it > was for MoZyme detox Enzyme pathways. > > TPP- 30 drops once a day for 2 weeks, For energy Pathways > > PAPS w/magnesium sulfate, ATP and Vit. C- 20 drops once a day for 4 > weeks, for brain and connective tissue energy. > > Has ANYONE ever heard of anything like this? yes. I have also known people who are good at muscle testing and some people go around muscle testing things all the time. I had the gold material that is in my dental crown " muscle tested " before the crown was made. (I got a sample of the material.) > Do you have any idea > if the stuff he said to give her is really suppose to do what he > says? not sure about that. best wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Hi, Two of our three best docs are chiropractors who are applied kinesiologists. The vial thing is related to NAET and it's cousins. This can work extremely well and be very accurate but it's hard to know because I've also come across practitioners who are delusional about their muscle testing skills. Just because something can work doesn't mean every practitioner can do it effectively. You have the best evidence, lab tests which correlate to what this chiropractor is finding. The other test is, is your child getting better? svernetti73 wrote: >Hey guys, it has been awhile since I have posted anything here but I >have a few questions. We found an awesome chiropractor for the >children. I have never seen anything like what he does. He did >muscle testing using different colors which was odd but today he did >testing using these little vials with different things in them. He >would have my daughter put her finger on each of the vials while he >was pushing on her arm. He told me that her cell function was all >messed up and that we needed to fix the pathways before doing >chelation. He had her hold different vials that he said " fixed the >pathways " . He had no access to any of her medical records, and I >had never mentioned any of her deficencies to him. From what he did >today he told me that she had IgG and IgE deficency (which showed on >her blood work a few months ago from her ped) said that she had a >problem with to much copper, aluminum, and manganese. All of these >things were elevated when we had her tested from another dr. He did >this all by touching different points and moving her arm. He gave >me this for her to take: >Ionized Molybdenum- 4 drops once a day for 6 weeks, said that it >was for MoZyme detox Enzyme pathways. > >TPP- 30 drops once a day for 2 weeks, For energy Pathways > >PAPS w/magnesium sulfate, ATP and Vit. C- 20 drops once a day for 4 >weeks, for brain and connective tissue energy. > >Has ANYONE ever heard of anything like this? Do you have any idea >if the stuff he said to give her is really suppose to do what he >says? He wasn't one of these pushy people that just wanted you to >buy supplements from him or anything. I am just curious to see if >anyone has had any experience with this before. > >Sam > > > > >======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 > I have tested porphirines for my 6 years old son : they do not show a > mercury intox according to my doctor . Did he normalize them to creatinine values or weight and work from a 24 hour collection? This is a test with frequent false negatives anyway. You can post the results (and reference ranges and description of how you did it) if you want. > As my son has many symptoms of mercury intoxication , ( autism ) , I > wonder if this negative result if enough to make a conclusion ? No. Definitely not. > Has any of the member of this forum had a negativ result on > porphyrine and a positive result, (clinicaly ), after applying the > Andy Cutler protocole ? Yes, this is frequent. > I dont find how to make the DDI " hair element " test as describes on > the FAQ ? > I have already made an hair test : it shows a little arsenic and > aluminium. should I do another one ? We need to know more about the hair test you did to say. What elements did they test? Which lab was it? .. . . . . . . > thanks for your help. > Cathe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 > I dont find how to make the DDI " hair element " test as describes on > the FAQ ? There is info on how to get the hair test or how to post the results, here: /files/HOW_TO_hair_test good wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 > > I have tested porphirines for my 6 years old son : they do not show > a > > mercury intox according to my doctor . > > Did he normalize them to creatinine values or weight and work from a > 24 hour collection? NO creatinine on 24h has never been done. > > This is a test with frequent false negatives anyway. > > You can post the results (and reference ranges and description of how > you did it) if you want. results are: uP : uroporphyrines I & II : 6 nmol ( ref range : 5-15) 7cxP : heptacarboxyporphyrine : 0.46 nmol ( 3.0 -5.6 ) 6cxP : hexacarboxyporphyrine 0.15 nmol ( 1.0 - 1.8 ) 5cxP : pentacarboxyporphyrine 0.30 nmol (1.9 -4.9 ) prcP : precoproporphyrine 1.4 nmol ( ?) cP : coproporphyrine I + III : 11 nmol (25-40) mP : mesoporphyrine : 0.0 nmol ( 0.01 - 1.0) reference range of my lab is not very representative : they used to performe this test for only a few months - their ref range comes from datas of kids with autism only. > > As my son has many symptoms of mercury intoxication , ( autism ) , I > > wonder if this negative result if enough to make a conclusion ? > > No. Definitely not. > > > Has any of the member of this forum had a negativ result on > > porphyrine and a positive result, (clinicaly ), after applying the > > Andy Cutler protocole ? > > Yes, this is frequent. > > > I dont find how to make the DDI " hair element " test as describes on > > the FAQ ? > > I have already made an hair test : it shows a little arsenic and > > aluminium. should I do another one ? > > We need to know more about the hair test you did to say. What > elements did they test? Which lab was it? .. . . . . . . Hair test was performed by a lab in switserland ( CRAO) results were : Cd : 0.03ppm = normal( they consider normal in the range: 0 - 0.4ppm ) Pb : 0.85ppm = normal ( they consider normal in the range : 0 -3ppm ) Al : 5.69ppm ( they consider normal in the range 0 -8ppm ) Hg : 0.28ppm ( the consider normal 0 - 1.2ppm ) As : 0.19ppm ( they consider normal 0 - 0.2 ppm ) Sn : 0.54ppm ( they consider normal 0 - 1.5 ppm) Be : 0.01 ppm ( they consider normal 0 - 0.1 ppm) > > thanks for your help. > > Cathe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 You need to tell me how the urine was collected for the porphyrin test and how much your child weighs or I can't say anything useful. Andy . . . . .. . . .. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 I have yet to see a rheumatologist - I am sure there are some, just haven't met any - who support the antibiotic protocol. Not a problem. You just have to write in to this site and request a list of doctors who do this. As far as penicillin allergy - I have that - and was just amazed I could do the Minocin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 .... Penicillin was origionally made from a mold found on bread. Tetricycline (from which Minocin is a third generation product) is a different structure and attacks different bacteria. Sort of like some people are allergic to ragweed and others may be allergic to hay. Both are plants yet people who are allergic to one may not be allergic to the other. I realize this is very simplistic, but I am not a scientist and this is the best I can come up with!!! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 On 3/24/06 10:36 AM, " Sltfain@... " <Sltfain@...> wrote: > As far as penicillin allergy - I have that - and was just amazed I could do > the Minocin. Yes, I am allergic to penicillin, and a number of NSAIDs, but have no problem with minocin. -- Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi Celia, I've sent you a list of doctors offline. Chris. On 25/03/2006, at 1:39 AM, Celia wrote: > > Question about doctors....where I do find a doctor receptive to this > idea? I have a feeling mine won't be, and he's the only rheumatologist > in my neck of the woods! > > Thanks! --Celia ) Quote Link to comment Share on other sites More sharing options...
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