Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 , Thanks for sharing your story. It definitely sounds like an interesting approach to treating this disease. My question concerns the warnings that the news media are sounding now about the overuse of antibiotics. They seem to be saying that overuse leads to the eventual ineffectiveness of the antibiotic, meaning that when you need an antibiotic to treat an infection, etc. it won't work, or won't work as well. Have you run into any problems with this? Thanks for the information! Sinead >From: jbgreenly@... >Reply- > >Subject: [ ] AP- antibiotic therapy >Date: Wed, 28 Mar 2001 22:09:53 -0000 > >Hi Geri- > >I have been taking doxycycline for nearly two years now. Since last >last fall I have cut back from 2x 100mg monday, weds and fri, to >100mg mon, weds fri. In other words, to half my original dose. I'm >continuing to feel great. I don't know whether I will eventually >stop entirely or not. I did try stopping for a month last December, >just to see what would happen- and nothing happened, I did not have a >flare at all. This is very different from when I stopped taking the >various NSAIDS, I always had bad flares and ended up worse than >before. I started the doxycycline again after Christmas because one >ankle still has a little remaining inflammation, and I want to see if >it can get totally well. > >As with this disease in general, it seems that people's experiences >vary widely. When people begin the AP (antibiotic protocol) early in >the disease, like in the first year, it seems to be possible to >really eradicate it, and then stop taking the antibiotic. O'Dell's >studies of early rheumatoid arthritis have shown great results over >four years now, with about half of the people being able to get off >all drugs. It seems that most people who, like me, have >long-standing >disease when we start the AP will probably want to continue it >indefinitely to avoid recurrence, or at least be ready to start again >immediately if it begins to come back. Either the organisms are so >deeply entrenched that the antibiotic can't completely eradicate >them, >or it may turn out that they are common, we easily get reinfected, >and >our immune systems are now sensitized to them. I don't think anybody >knows. A complicating factor is that the tetracyclines (doxycycline >and minocycline are most often used) also do have quite strong anti- >inflammatory effects which are independent of their antibiotic >properties. They inhibit the production of the enzymes called >metalloproteinases that break down cartilage. It's not clear to me >that anybody knows exactly how all this goes together in their >effectiveness against arthritis. I do know that my knees, which had a >lot of cartilage damage, feel amazingly strong now. I am a >scientist, and I am frustrated that the money for research to answer >these questions hasn't been found. Part of the problem is that these >are cheap, generic drugs, and there is not big money to be made by >some drug company in researching this. But- the point is, it works! > >What is definitely very clear is that this is a safe treatment for >the long term, and that it is cheap enough to afford. There are >people who have been on the AP for 20 years and more, and since these >antibiotics are routinely prescribed for years for acne, there are >many millions of patient-years of experience with them. Generic >doxycycline costs me $7 every other month- that's my total drug bill >(it's not only safer than aspirin, it's cheaper, too!) > >I very highly recommend that you check out the information at the >roadback.org site, and the book by Henry Scammell, which is how I >found out about this, and really answered my questions very well. I'm >sure that the AP won't help everybody as much as it has me, and it is >not described as a cure, but it is a VERY safe treatment compared >with any of the other options, it is cheap, and it has worked >extremely well for many people. I hope this helps you- ask again if >you have other questions. Very best wishes -- > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 > , > > Thanks for sharing your story. It definitely sounds like an interesting approach to treating this disease. My question concerns the warnings that the news media are sounding now about the overuse of antibiotics. They seem to be saying that overuse leads to the eventual ineffectiveness of the antibiotic, meaning that when you need an antibiotic to treat an infection, etc. it won't work, or won't work as well. Have you run into any problems with this? Thanks for the information! > Sinead Hi Sinead- You ask a very important question. I was worried about this too. Overuse and misuse of antibiotics (like giving them for colds and other viruses they don't even work on!) is a huge problem, and that includes gross misuse in animal feed as well. The problem is that bacteria can evolve resistance to a particular antibiotic over time, so it becomes ineffective against them. (Notice it's the germs, not the person, that develop resistance!) Most antibiotics work by being engineered to attack some particular protein on the surface of the bacterial cell wall. Unfortunately, these surface proteins mutate and evolve very easily and rapidly. (By the way, this is an absolutely clear case of evolution in action- and fast!). The antibiotics used in the AP (antibiotic protocol) for arthritis, doxycycline and minocycline, are derivatives of tetracycline, which is a natural antibiotic evolved by certain organisms that live in soil, to compete with other bacteria. These tetracyclines were discovered, and have been used in medicine since the 1940's, so it's one of the oldest types of antibiotic. There has not been a problem with developing resistance to them. Why? I'm not an expert, but tetracyclines work in a very different way, by interfering with a fundamental process of protein synthesis inside the bacterial cell, and it is said that it is very unlikely that resistance could develop. I guess it's another case of nature being smarter than humans- those germs that evolved tetracycline had millions of years to do it, fighting other bacteria all the way, and came up with a better weapon than human scientists have so far. So these drugs don't work on all bacteria, but the ones they do work on aren't likely to find a way to beat them anytime soon. I came across a fascinating piece of evidence recently. It seems that archaeologists investigating the ancient civilization of Nubia in Africa detected tetracycline in the bones of mummies. These people apparently ingested tetracyclines all their lives, likely because their primitive beer was made from grain contaminated by those tetracycline-producing soil bugs! Bones can be analyzed for all sorts of illnesses, and it was found that these people had very healthy joints, great teeth and gums, and no evidence of increasing resistant infections showing up over about a 500 year period. In any case, my doctor, who is very conservative about antibiotic use, told me that there are (at least at the present!) alternative antibiotics to tetracyclines for all the infections they are used against, and he was very willing to let me take doxycycline indefinitely. One of the main uses of tetracyclines today is against acne, for which people often take them for years. By that standard, arthritis (as we know all too well) is a very serious disease, and this is not a frivolous use of antibiotics. In any case, I've had no problems, and I haven't heard of any from anyone else, including people who have been doing this for 20 years or more. Hope this helps- best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Dear Your emails on antibiotic therapy have been absolutely fascinating! I have a question about your treatment regime, which has been on my mind since I originally read the material available at the Road Home website. Extended use of antibiotics such as tetracyclines is sometimes associated with chronic candida overgrowth in the large intestine, because of the disruption caused to the intestinal flora. The medical profession is only beginning to accept that this can give rise to very serious health problems. Has your doctor raised this subject, perhaps by suggesting the use of anti-fungals and probiotic cultures during the antibiotic therapy? Have you heard of people who follow this treatment programme having intestinal problems or allergies? Thanks in advance, jonpr@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 A side note about the yeast problems with us - diabetics be careful what you use if you get a yeast infection. Diflucan, the one dose pill, which will knock the heck out of your yeast infection has a bad interaction with glucophage. FWIW, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 Good questions . I looked up some sites to get come more info and these are some of the things that I found on side effects. Minerals have some effects on it's effect. Take at a Different Time of Day Numerous minerals, including aluminum (found in many antacids), bismuth (in Pepto-Bismol), calcium, iron, magnesium, and zinc, interfere with the absorption of medications in the tetracycline family (and vice versa).1–4 The reason is the minerals and the drugs attach to each other and form insoluble chemicals that simply pass out of the digestive tract. The best solution is to avoid taking supplements that contain these minerals within the 2 hours before or after your dose of tetracycline medication. Tetracyclines may cause your skin to be more sensitive to sunlight than it is normally. Exposure to sunlight, even for brief periods of time, may cause a skin rash, itching, redness or other discoloration of the skin, or a severe sunburn. When you begin taking this medicine: Side Effects For all tetracyclines More common: Increased sensitivity of skin to sunlight (rare with minocycline) Rare: Abdominal pain; bulging fontanel (soft spot on head) of nfants; headache; loss of appetite; nausea and vomiting; visual changes; yellowing skin For demeclocycline only Less common Greatly increased frequency of urination or amount of urine; ncreased thirst; unusual tiredness or weakness For minocycline only Less common Pigmentation (darker color or discoloration) of skin and mucous membranes Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome: For all tetracyclines More common Cramps or burning of the stomach; diarrhea Less common Itching of the rectal or genital (sex organ) areas; sore mouth or tongue For minocycline only More common Dizziness, light-headedness, or unsteadiness In some patients tetracyclines may cause the tongue to become darkened or discolored. This effect is only temporary and will go away when you stop taking this medicine. Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor. Address of the following information is has follows: http://www.nlm.nih.gov/medlineplus/druginfo/tetracyclinessystemic20255 2.html , have you had any of these side effects? If so how have you been dealing with them? If not have you had any other side effects? Is you diet, or timing of taking your medicaton special in anyway? Thanks, Roy :{) Dear Your emails on antibiotic therapy have been absolutely fascinating! I have a question about your treatment regime, which has been on my mind since I originally read the material available at the Road Home website. Extended use of antibiotics such as tetracyclines is sometimes associated with chronic candida overgrowth in the large intestine, because of the disruption caused to the intestinal flora. The medical profession is only beginning to accept that this can give rise to very serious health problems. Has your doctor raised this subject, perhaps by suggesting the use of anti-fungals and probiotic cultures during the antibiotic therapy? Have you heard of people who follow this treatment programme having intestinal problems or allergies? Thanks in advance, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 > Dear > > Your emails on antibiotic therapy have been absolutely fascinating! I have a question about your treatment regime, which has been on my mind since I originally read the material available at the Road Home website. Extended use of antibiotics such as tetracyclines is sometimes associated with chronic candida overgrowth in the large intestine, because of the disruption caused to the intestinal flora. The medical profession is only beginning to accept that this can give rise to very serious health problems. Has your doctor raised this subject, perhaps by suggesting the use of anti-fungals and probiotic cultures during the antibiotic therapy? Have you heard of people who follow this treatment programme having intestinal problems or allergies? > > Thanks in advance, > > jonpr@e... Hi - Good question- I was worried about this too. It sounds like you are well aware of the huge volume of info on the Web on the bad things candida (yeast infection) can do. The antibiotic protocol I am on deals with this danger in several ways. First, I take the antibiotic only three days a week, (100 mg MWF) to give the gut flora a chance to stay normal. The tetracycline antibiotics happen to concentrate in the joints and stay there in between doses, and this low dose seems to be adequate to control the bad organisms there. The other thing that I do is eat some good (live culture) yogurt every day. Dr Brown who pioneered this therapy and treated around 10,000 patients over 40 years used this low-dose regime, and said that yogurt was all that was needed to avoid yeast problems. However, some doctors are now using the full standard antibiotic dose of 200 mg every day, especially in the case of really lethal disease like scleroderma, which the AP is also being used on with wonderful success. Many people now take acidophilus or probiotic supplements to do the same thing- replenish the good gut bacteria that will be reduced by the antibiotic. Another thing people commonly do is reduce sugar and processed starch, ie white flour in their diet, which yeasts thrive on in the digestive tract. I started doing this myself years ago anyway, long before I started the AP, because I found my arthritis improved some with a low- starch and sugar diet. Finally, some natural antifungals, like garlic, and grapefruit seed extract, are used by some people who have had chronic yeast problems even before starting the AP. I love garlic, so this is no change for me either. By the way, I suspect that quite a lot of arthritis patients do have yeast problems, because many of the standard immune-supressing drugs, as well as NSAIDS, can also disrupt the digestive tract and cause this problem. This issue certainly is a concern to me over the long term with the AP, and so I am trying to use the minimum possible antibiotic dose as time goes on. So far I don't seem to have had any problems, and I don't know of anyone who has had to give up on the AP because of this. Best wishes -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 I used tetracyline (?) long-term in my teenage years to control acne and have been rewarded with chronic vaginal yeast infections. I take garlic and acidophilis as dietary supplements as well as eating plenty of my own organically grown garlic and some yogurt. My yeast infection has been out of control the last two months. I have tried OTC and prescription medicines as well as being " painted " with betadyne. I didn't know NSAIDs could aggravate it. My current flare corresponds to the amount of time I have been taking the NSAID. I sure wish I could just have one disease at a time. It would be so much easier! in KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 > Good questions . I looked up some sites to get come more > info and these are some of the things that I found on side effects. (I repeated this info at the bottom of this page --) > , have you had any of these side effects? If so how have you > been dealing with them? If not have you had any other side effects? > Is you diet, or timing of taking your medicaton special in anyway? > > Thanks, > Roy :{) Hi Roy- Let me try to tell you what I know. First of all, as for me, the only side effect of doxycycline I have found is that it gives me a stomach ache if I take it with only water. So I always take it with some food- even one piece of bread, or an apple for instance, is enough to get rid of that problem. The directions that come with it from the pharmacy say to take with food, but avoid mineral supplements- calcium and iron- at the same time, as your info says, so I do that. I just take cheap generic doxy, and there are fancy kinds that are time-release that are supposed to be easier on the stomach. Also minocycline is apparently easier on the stomach. I take the doxycycline 100 mg monday, weds and fri. (This is much lower than the standard antibiotic dose for diseases- 200 mg daily). My diet is, I hope, healthy. The only special thing I do is eat yogurt every day, and restrict sugar and refined starch- white flour, as much as possible. I wrote another message today that explains why- to guard against yeast problems. Doxycycline and minocycline are the drugs most people are using in the antibiotic protocol (AP). They are modern derivatives of plain tetracycline that interact much more weakly with minerals and vitamins, so you can take them with food. I'm still confused about this, though, because some of the doctors that do AP apparently insist that they be taken with water only for maximum effect. I don't understand why, and I have done wonderfully taking mine with food. The technical data I have found indicate that though tetracycline may be only around 50% absorbed with food, doxy and mino are 90-100% absorbed, and are even OK with milk. So, this is a puzzle to me. I know of no scientific study comparing with vs without food. Dizziness is definitely reported as a side effect of minocycline by some people. It apparently often goes away after a week or two, but some people can't take it. I started on doxycycline bacause I was having dizzy spells anyway when my arthritis was very bad, and my doctor suggested we avoid minocycline because of that. Sun sensitivity is supposed to happen- I think that means you sunburn more easily. But I haven't noticed any difference myself, and I don't recollect others talking about it. I think some people use sunscreen or wear hats when they are out a long time to be safe. I go to the coast of Maine every year on vacation and am out in the sun all day, and haven't noticed that I burn any easier than before, but I imagine it probably would be different for some people. Minocycline is supposed to be much less of a problem this way, and might be the choice for people who tend to be sun-sensitive. I don't know about the pigmentation effects- I've seen that information too, but I haven't heard of people having those problems. One effect that many people notice is that when you start the antibiotic protocol, you may feel worse at first. This happened to me- the second day, I felt horrible, and couldn't get out of bed for three days. Luckily I had read the book and knew that this can result when the antibiotic begins killing the germs- the toxic remains of the dead organisms can really stir up the immune system, causing what is known as a Jarisch-Herxheimer reaction ( " Herx " for short) which wasnoticed by those guys when antibiotics were first being used for some other disease. So, though definitely not nice at the time, this is actually a good sign- it means the drug is working. It is usually recommended to start with a really low dose and work up, to help minimize this possibility, and also with minocycline to minimize the possibility of initial dizziness. I was impatient and started right off with 2 x 100 mg, MWF. I've cut that back now by half, just because I don't see any sense in taking any more than necessary, and so far I haven't slid back at all. The way people respond varies greatly, but most likely, as for me, this is expected to be a slow process, definitely not an overnight miracle. It took around six months before I was really clearly getting much better, with lots of ups and downs all along the way. That's why the foundation took the name " Road Back " - it's like a (bumpy!) road to travel on back to health, not a magic bullet, and it takes real patience. But, I think very many of you realize that this is a lifetime fight you are in, and to me, after 28 years with psoriatic arthritis, it's absolutely clear that the long-term view is the only one that makes any sense at all. That's why safety and lack of side effects are absolute top priority for me. Best wishes -- Here's the rest of the list of side effects and instructions for tetracyclines Roy found: > Minerals have some effects on it's effect. > Take at a Different Time of Day Numerous minerals, including > aluminum (found in many antacids), bismuth (in Pepto-Bismol), calcium, > iron, magnesium, and zinc, interfere with the absorption of > medications in the tetracycline family (and vice versa).1–4 > > The reason is the minerals and the drugs attach to each other and > form insoluble chemicals that simply pass out of the digestive tract. > The best solution is to avoid taking supplements that contain these > minerals within the 2 hours before or after your dose of tetracycline > medication. > > Tetracyclines may cause your skin to be more sensitive to sunlight > than it is normally. Exposure to sunlight, even for brief periods of > time, may cause a skin rash, itching, redness or other discoloration > of the skin, or a severe sunburn. When you begin taking this > medicine: > > Side Effects > For all tetracyclines > More common: > Increased sensitivity of skin to sunlight (rare with minocycline) > Rare: > Abdominal pain; bulging fontanel (soft spot on head) of nfants; > headache; loss of appetite; nausea and vomiting; visual changes; > yellowing skin > > For demeclocycline only > Less common > Greatly increased frequency of urination or amount of urine; ncreased > thirst; unusual tiredness or weakness > > For minocycline only > Less common > Pigmentation (darker color or discoloration) of skin and mucous > membranes > > Other side effects may occur that usually do not need medical > attention. These side effects may go away during treatment as your > body adjusts to the medicine. However, check with your doctor if any > of the following side effects continue or are bothersome: > > For all tetracyclines > More common > Cramps or burning of the stomach; diarrhea > Less common > Itching of the rectal or genital (sex organ) areas; sore mouth or > tongue > > For minocycline only > More common > Dizziness, light-headedness, or unsteadiness > > In some patients tetracyclines may cause the tongue to become > darkened or discolored. This effect is only temporary and will go > away when you stop taking this medicine. > > Other side effects not listed above may also occur in some patients. > If you notice any other effects, check with your doctor. > > Address of the following information is has follows: > http://www.nlm.nih.gov/medlineplus/druginfo/tetr acyclinessystemic20255 > 2.html > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2001 Report Share Posted April 5, 2001 > I used tetracyline (?) long-term in my teenage years to control acne > and have been rewarded with chronic vaginal yeast infections. I > take garlic and acidophilis as dietary supplements as well as > eating plenty of my own organically grown garlic and some yogurt. > My yeast infection has been out of control the last two months. I > have tried OTC and prescription medicines as well as being > " painted " with betadyne. I didn't know NSAIDs could aggravate it. > My current flare corresponds to the amount of time I have been > taking the NSAID. I sure wish I could just have one disease at a > time. It would be so much easier! > in KS Hi - I know what you mean- why do these things have to be so complicated? I'm sure you know that there is strong evidence that most chronic vaginal yeast infections are associated with intestinal or systemic yeast problems too, so you have to attack all of that to beat it. I know only a little about the NSAID business. A really dirty secret of all those wonderful anti-inflammatory drugs called NSAIDS that all the ads are pushing at us is the true extent of damage they do to the lining of the digestive tract. The latest figure I have is that there are about 100,000 hospitalizations a year and 16,000 deaths in the US due to NSAID- caused ulceration of the intestines. That's the part that many people are aware of. But many aren't aware that even when (as for most of us, luckily) they don't cause disasterous events like that, they do cause increased intestinal permeability, making it easier for things like food allergens, bacteria and yeasts to invade the body through the intestinal wall. The whole " leaky gut syndrome " thing seems to be somewhat disreputable in the medical mainstream, but is gaining more and more attention as to its role in chronic illness. There's no doubt that our modern high-sugar, low fiber diet makes us prone to gut troubles anyway, and NSAIDS certainly don't help. The claim to fame of the new COX-2 inhibitors, Celebrex and Vioxx, is that they don't have such a bad effect on the gut, but they are very new, and already some other worrisome things are showing up about them. It is complicated! Just a thought- have you tried grapefruit seed extract? I have read great things about its effectiveness and safety for intestinal yeast- no personal experience, though. Oh, and I wonder- do you remember what dose of tetracycline you were on- every day? And, did they give you anything to help avoid yeast- yogurt or acidophilus or anything, while you were on the tetra? Best wishes -- Quote Link to comment Share on other sites More sharing options...
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