Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hi Paige, I had a similar experience. I never felt any worse after I started. I started out at the same dosage. After feeling like I wasn't getting any results, I added 100mg MWF. After taking 200mg MWF I still didn't notice that I was feeling any worse. My labs got worse but then got MUCH better. I'm approaching the 3 year mark and I feel great. Don't lose heart. Just because you don't feel like heck doesn't mean that it's not working. If I've learned nothing else along the way I have learned that everyone's response to this therapy is different. Regards, Dee rheumatic AP question > Hi, > > Here's my question: > I've been on 100mg/MWF minocin for 3 weeks. > > No Herx - maybe a little exacerbation of symptoms, but nothing out of the > ordinary. I mean, the increase in pain/stiffness was no different than a > regular flare-up, it could be coincidence that it happened about a week into > my AP. No fever or any other severe reactions that I've read about. Part > of me is relieved that I didn't get ill, another part of me is a little > discouraged, thinking no herx means its not working. True or false? > > Since I had no reaction (or did I?), should I increase my dosage? My own > doctor's AP calls for 100mg/daily. I've been following Brown's protocol, > and other AP docs on the web seem to be in agreement that more is not > necessarily better. So, I'm consulting the experts... YOU! Thoughts? > Personal experiences? > > TIA, > Paige > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hi Paige, I would think the less you can do the better. A lot depends on how active and aggressive your disease is. Mine was and I needed to do every day as I also was on toxic meds I needed to wean. I know a few have done M-F with weekends off. That sounds doable as well. You can also try the 2x aday MWF. Lots of options. I know I go with what feels good for me. As far as the hrx, some have really bad ones and some do not. It still may come as you increase the dose if thats the route you choose. Several options for you to choose. Whatever you choose, I would journal the response as this will help you give good info to your doc. Love Marge > Hi, > > Here's my question: > I've been on 100mg/MWF minocin for 3 weeks. > > No Herx - maybe a little exacerbation of symptoms, but nothing out of the > ordinary. I mean, the increase in pain/stiffness was no different than a > regular flare-up, it could be coincidence that it happened about a week into > my AP. No fever or any other severe reactions that I've read about. Part > of me is relieved that I didn't get ill, another part of me is a little > discouraged, thinking no herx means its not working. True or false? > > Since I had no reaction (or did I?), should I increase my dosage? My own > doctor's AP calls for 100mg/daily. I've been following Brown's protocol, > and other AP docs on the web seem to be in agreement that more is not > necessarily better. So, I'm consulting the experts... YOU! Thoughts? > Personal experiences? > > TIA, > Paige Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2007 Report Share Posted August 19, 2007 I didn't have to go off my antibiotics to have a blood test for micoplasmas. That doesn't make sense to me. Micoplasmas take a long time to die off. Antibiotics don't kill them, they just weaken them. A good strong working immune system kills them. After being on A/P 20 months I had another micoplasma test and I still have micoplasma pneumoniae, but at a lower level. I don't ever expect to be completely free of micoplasmas, but I will keep on taking my antibiotic because I don't want to give the micoplasmas a chance to strengthen or multipy. Most people in this world carry micoplasmas in their body. It is when the body is so overloaded with them and an emotional, or psychological, or physical trauma triggers, the immune system and weakens it, so it can not handle the overloadload and it loses it's ability to keep us safe. That's when we get sick. I wonder just how much your doctor has read about micoplasmas and antibiotics. One does not necessarily cancel out the other. Take your antibiotics and continue to strengthen your immune system and eventually your symptoms will decrease and when your disease goes into a phase where it is no longer advancing and your normal life returns, then you are in remission. But not cured. For that there are other protocols. It sounds to me like your doc wants to show you that Antibiotics are not doing anything for you so he/she can talk you into discontinuing them. How long have you been on antibiotics? I'm in my 20th month and in remission because I never took any immune suppressant medications. They work against your immune system by shutting down their response and the disease continues. My immune system has even started to repair some of my affected organs and my disease is regressing. Hang in there. You can not rush this. It is a lifetime committment to get healthy and remain healthy. You may be on antibiotics from time to time for the rest of your life. Go ahead and have your test. Keep the results as a base line, then next year have them checked again for comparison. Dolores Rosner. " rbarna dejazzd.com " <rbarna@...> wrote: Can anyone tell me how long you can stay off the antibiotics before you have a micoplasma test ... and...how long is it " safe " to stay off the antibiotics before the SD flairs up again? My doctor has had me stop the antibiotics for a bit due to some intestenial issues that need to be checked out. Thanks for helping me with this. Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2007 Report Share Posted August 19, 2007 I went to Dr Franco who is supposed to be a very antibiotic pro doctor and he had me go off of the antibiotics for a while to take the microplasma test! I can't remember how long as it was a long time ago. So at doesn't mean that the dr is anti antibiotics!! Cari , mike rosner <martysfolks2004@...> wrote: > > . I wonder just how much your doctor has read about micoplasmas and > antibiotics........ > > It sounds to me like your doc wants to show you that Antibiotics are not > doing anything for you so he/she can talk you into discontinuing them. How > long have you been on antibiotics? > > Dolores Rosner. > > " rbarna dejazzd.com " <rbarna@... <rbarna%40dejazzd.com>> wrote: > Can anyone tell me how long you can stay off the antibiotics before you have > a micoplasma test ... > > and...how long is it " safe " to stay off the antibiotics before the SD > flairs up again? My doctor has had me stop the antibiotics for a bit due to > some intestenial issues that need to be checked out. > Thanks for helping me with this. > Roni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 Here is a letter from Dr. Franco re this issue. You will find it at the end of the FAQ on www.rheumatic.org * IMPORTANT MESSAGE from A. Franco, MD, Arthritis Center of Riverside, Riverside, California. Dear Patients, I often find that patients that come to see me for diagnosis and treatment for rheumatic diseases have already started on antibiotic treatment. Although this may be helpful to the patient, it would be best when applicable to have the appropriate work-up PRIOR to starting antibiotic treatment. I am referring especially to the mycoplasma and Chlamydia PCR test (generic fingerprint). Antibiotics may render this test negative and thereby often making useless this great diagnostic tool, especially in view of the fact that patients will be obligated to use antibiotics for several years exposing themselves to some potential toxic side effects. If you have already started antibiotics, you should continue and consider going off for 4 weeks prior to your visit to the Arthritis Center of Riverside, or your physician's office where these tests may be done. If it is possible to do the above, you will increase your chances of confirming the infectious cause of your rheumatic disease. Even more so by doing the test prior to initiating antibiotic treatment. Additionally, your insurance company will be more likely to authorize and pay for IV treatment if you have a positive mycoplasma PCR test. I hope this information proves useful to you. Sincerely, A. Franco, MD Re: rheumatic AP question >I went to Dr Franco who is supposed to be a very antibiotic pro doctor and > he had me go off of the antibiotics for a while to take the microplasma > test! I can't remember how long as it was a long time ago. So at doesn't > mean that the dr is anti antibiotics!! > Cari > > > , mike rosner <martysfolks2004@...> wrote: >> >> . I wonder just how much your doctor has read about micoplasmas and >> antibiotics........ >> >> > > > It sounds to me like your doc wants to show you that Antibiotics are not >> doing anything for you so he/she can talk you into discontinuing them. >> How >> long have you been on antibiotics? >> >> > > > Dolores Rosner. >> >> " rbarna dejazzd.com " <rbarna@... <rbarna%40dejazzd.com>> wrote: >> Can anyone tell me how long you can stay off the antibiotics before you >> have >> a micoplasma test ... >> >> and...how long is it " safe " to stay off the antibiotics before the SD >> flairs up again? My doctor has had me stop the antibiotics for a bit due >> to >> some intestenial issues that need to be checked out. >> Thanks for helping me with this. >> Roni >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 Thanks Ethel, That answered my question. I plan on printing that out and taking it to my doctor, also to Dr. Whitman when I have the appointment with him. Re: rheumatic AP question > > > > >I went to Dr Franco who is supposed to be a very antibiotic pro doctor and > > > he had me go off of the antibiotics for a while to take the microplasma > > > test! I can't remember how long as it was a long time ago. So at doesn't > > > mean that the dr is anti antibiotics!! > > > Cari > > > > > > > > > , mike rosner <martysfolks2004@...> wrote: > > >> > > >> . I wonder just how much your doctor has read about micoplasmas and > > >> antibiotics........ > > >> > > >> > > > > > > > > > It sounds to me like your doc wants to show you that Antibiotics are not > > >> doing anything for you so he/she can talk you into discontinuing them. > > >> How > > >> long have you been on antibiotics? > > >> > > >> > > > > > > > > > Dolores Rosner. > > >> > > >> " rbarna dejazzd.com " <rbarna@... <rbarna%40dejazzd.com>> wrote: > > >> Can anyone tell me how long you can stay off the antibiotics before you > > >> have > > >> a micoplasma test ... > > >> > > >> and...how long is it " safe " to stay off the antibiotics before the SD > > >> flairs up again? My doctor has had me stop the antibiotics for a bit due > > >> to > > >> some intestenial issues that need to be checked out. > > >> Thanks for helping me with this. > > >> Roni > > >> > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 Dr. Franco usually has you do that the first time you go see him - he wants you off the AP for 6 weeks prior to your first visit and first blood tests. he has never asked me to quit taking them since. >From: " Cari D " <carilynd@...> >Reply-rheumatic >rheumatic >Subject: Re: rheumatic AP question >Date: Sun, 19 Aug 2007 20:42:10 -0700 > >I went to Dr Franco who is supposed to be a very antibiotic pro doctor and >he had me go off of the antibiotics for a while to take the microplasma >test! I can't remember how long as it was a long time ago. So at doesn't >mean that the dr is anti antibiotics!! >Cari > > >, mike rosner <martysfolks2004@...> wrote: > > > > . I wonder just how much your doctor has read about micoplasmas and > > antibiotics........ > > > > > > > It sounds to me like your doc wants to show you that Antibiotics are >not > > doing anything for you so he/she can talk you into discontinuing them. >How > > long have you been on antibiotics? > > > > > > > Dolores Rosner. > > > > " rbarna dejazzd.com " <rbarna@... <rbarna%40dejazzd.com>> wrote: > > Can anyone tell me how long you can stay off the antibiotics before you >have > > a micoplasma test ... > > > > and...how long is it " safe " to stay off the antibiotics before the SD > > flairs up again? My doctor has had me stop the antibiotics for a bit due >to > > some intestenial issues that need to be checked out. > > Thanks for helping me with this. > > Roni > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 Thank you Ethel for clearing that up for us right from the words of Dr.Franco. I will save it in my files. Dolores Ethel Snooks <emsnooks@...> wrote: Here is a letter from Dr. Franco re this issue. You will find it at the end of the FAQ on www.rheumatic.org * IMPORTANT MESSAGE from A. Franco, MD, Arthritis Center of Riverside, Riverside, California. Dear Patients, I often find that patients that come to see me for diagnosis and treatment for rheumatic diseases have already started on antibiotic treatment. Although this may be helpful to the patient, it would be best when applicable to have the appropriate work-up PRIOR to starting antibiotic treatment. I am referring especially to the mycoplasma and Chlamydia PCR test (generic fingerprint). Antibiotics may render this test negative and thereby often making useless this great diagnostic tool, especially in view of the fact that patients will be obligated to use antibiotics for several years exposing themselves to some potential toxic side effects. If you have already started antibiotics, you should continue and consider going off for 4 weeks prior to your visit to the Arthritis Center of Riverside, or your physician's office where these tests may be done. If it is possible to do the above, you will increase your chances of confirming the infectious cause of your rheumatic disease. Even more so by doing the test prior to initiating antibiotic treatment. Additionally, your insurance company will be more likely to authorize and pay for IV treatment if you have a positive mycoplasma PCR test. I hope this information proves useful to you. Sincerely, A. Franco, MD Re: rheumatic AP question >I went to Dr Franco who is supposed to be a very antibiotic pro doctor and > he had me go off of the antibiotics for a while to take the microplasma > test! I can't remember how long as it was a long time ago. So at doesn't > mean that the dr is anti antibiotics!! > Cari > > > , mike rosner <martysfolks2004@...> wrote: >> >> . I wonder just how much your doctor has read about micoplasmas and >> antibiotics........ >> >> > > > It sounds to me like your doc wants to show you that Antibiotics are not >> doing anything for you so he/she can talk you into discontinuing them. >> How >> long have you been on antibiotics? >> >> > > > Dolores Rosner. >> >> " rbarna dejazzd.com " <rbarna@... <rbarna%40dejazzd.com>> wrote: >> Can anyone tell me how long you can stay off the antibiotics before you >> have >> a micoplasma test ... >> >> and...how long is it " safe " to stay off the antibiotics before the SD >> flairs up again? My doctor has had me stop the antibiotics for a bit due >> to >> some intestenial issues that need to be checked out. >> Thanks for helping me with this. >> Roni >> > --------------------------------- Ready for the edge of your seat? Check out tonight's top picks on TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 I have been on 100 mg minocylcine since september. My symptoms seem to be pretty much in control. How long would I need to stay on 100 mg once daily ? when should I think about cutting down? I have a DR apt weds, with a DR whos not familiar with AP but willing to write the scripts. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Answer to A/P question is to keep on taking the Minocin. I was on Minocin 100mg twice a day for 2 years and am now on M/P. If you stop now, you give the micoplasmas a chance to regenerate, causing you to get worse. It is harder the second time around with Minocin to get a handle on it. If you are doing well, why stop. Those micos are not dead yet. This is a long term disease and needs long term therapy. Good luck to you and take that next pill, please. Dolores & Mike Kathy <sunbriar@...> wrote: I have been on 100 mg minocylcine since september. My symptoms seem to be pretty much in control. How long would I need to stay on 100 mg once daily ? when should I think about cutting down? I have a DR apt weds, with a DR whos not familiar with AP but willing to write the scripts. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 Hi Kathy, Lucky you to have a doc who will write the scripts for minocin. Now educate him slowly. Stay on the Minocin. I've been on it since 2005 and plan to stay on it for years to come. I feel perfectly healthy, but I will never go back to where I was on my deathbed in 2005. You can cut back a bit, but do not go off. Good luck Dolores bonlucas <bonlucas@...> wrote: Hi Kathy. I see things a little differently. My goal is to stay as healthy as I can while taking the least amount of medication. If you have been well controlled for 8 months with daily dosing, and you have early, mild disease -- perhaps you will do well with pulse dosing, and can reduce your dosage from 7 days/week to 3 days/week. I would try going 6 days a week for a few months and see how you feel. If you continue to do well, cut back to 5 days for another few months, and so on. There is less chance of side effects (induced lupus, skin pigmentation, etc.) on the lower dose of minocin. If you don't need it to control the disease I would cut back. I would not, however, stop it. I plan to stay on a very low dose forever. I am personally terrified of RA coming back with a vengence, and the minocin not working later. This may be a completely irrational fear, but I have it. Bonnie Lou > > I have been on 100 mg minocylcine since september. My symptoms seem to be pretty much in control. How long would I need to stay on 100 mg once daily ? when should I think about cutting down? I have a DR apt weds, with a DR whos not familiar with AP but willing to write the scripts. Kathy > > Quote Link to comment Share on other sites More sharing options...
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