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  • #303467
    ekrueger
    Participant

    Hi all,

    I just read on a post a few threads back that the body can become “tolerant” to an antibiotic after a few years after which time it may be prudent to “rotate” antibiotics.  In this way, antibiotic therapy is no different from all of the other drugs out there used to treat RA (biologics, DMARD's, etc.).  I had hope for this form of treatment that this would NOT happen and this is the impression I gleaned from reading The New Arthritis Breakthrough. I thought that the body did NOT build up a resistance to the tetracyclines.  Anyone have any thoughts?

    Thanks,
    Liz

    #341192
    Maz
    Keymaster

    [user=1992]ekrueger[/user] wrote:

    I just read on a post a few threads back that the body can become “tolerant” to an antibiotic after a few years after which time it may be prudent to “rotate” antibiotics.  

     I thought that the body did NOT build up a resistance to the tetracyclines.  Anyone have any thoughts?

    Hi Liz,

    Here is a link from the main site that explains the possibility of this phenomenon a bit:

    https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/118.html

    “Improvement

    Improvement varies significantly between patients. It is not unusual for it to take 2 to 5 years to see a significant reversal of symptoms both clinically and in lab results; although increasingly frequent periods of well-being may be seen before a reversal of symptoms is noticed. Some patients experience a worsening of symptoms (Herxheimer reaction) for up to a year before seeing improvement.

    In patients with long-standing and/or severe disease, antibiotic therapy should be looked upon as a therapy for the patient's lifetime, but kept to a maintenance level (3 days a week) once re mission is achieved and to prevent a return of symptoms. If the disease is caught early, medication can sometimes be discontinued.

    Improvement may be gradual and frequently subtle. Often lab numbers improve before clinical improvement is noted, but the reverse may also be true. It is not unusual for physicians to see as high as 70% of their patients improve to a significant degree while using antibiotics. As improvement is achieved, discontinuation of other medications is often possible.

    By using low doses on alternate days and rotating the antibiotic every four or five years drug resistance or tolerance can be avoided.”

    And another:

    https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

    “10. Does the drug need to be rotated? Antibiotic therapy is a long-term therapy, months and years in most, – even for a lifetime in some. After 5-6 years, a patient can become tolerant of an antibiotic. Rotating to another antibiotic even within the same drug class can keep response optimal and avoid plateaus.”

    You're right, the tetracyclines are “bacteriostatic” and so they penetrate the pathogen cell walls and work by blocking certain enzymatic processes of the targeted organism's to slow them down. They don't work like penicillins, which are bacteriocidal, and destroy cell walls outright. It's on the cell wall where resistance is formed, but mycoplasma do not have cell walls, only a thin outer lipid layer.

    Often it's a person's total pathogen load that is at issue, not necessarily just the mycoplasma to which Brown said rheumatics develop bacterial allergies. Once the overhwhelming infection is controlled, other opportunistic organisms within the host may surface, the untreated coinfections, which is why some folk find that adding a second antibiotic (usually a broad spectrum macrolide, like azithromycin or clarithromycin) can give the therapy a boost. You'll see a number of folk here on pulsed combination therapies, which are said to help prevent resistence issues. A lot of these organisms seem to work synergistically, conferring protection to one another within bio-film communities. For instance, they know that strep is not in any way resistant to penicillins in the test tube, but in many cases, a penicillin alone won't treat a strep throat. This is because the other organisms in the throat and oral cavity are protecting the strep in their bio-films (like the slime on the top of a stagnant pond). This is why often a second antibiotic is needed to be curative for an acute strep infection. The following article explains this phenomenon a bit, but is focused more on the penicillin/strep story: 

    http://www.sciencedaily.com/videos/2006/1007-sick_of_strep_throat.htm

    I was talking about this with my doc a while back and he commented that doctors are often concerned that antibiotic resistence is formed by overuse. However, in his experience, when a patient plateaus out in progress for a while, often switching the antibiotic can put a patient back on track. The switch allows the gut fauna targeted by a particular antibiotic a chance to regroup and normalise again. No doubt the bio-films are also rattled by the change. This doesn't mean a patient can't go back on their old antibiotic…it just means that a temporary switch from mino to doxy or even a different class of antibiotic, for instance, for a few months can reset the program, like rebooting you computer almost when it freezes.  

    That said, not all patients will find they need to rotate their antibiotic. Some old-timers have been on their minocycline or doxycycline for decades and never need to rotate. For those that do, adding a second antibiotic if they find their disease creeping back in, or switching to a different tetra for a few months can make all the difference. Brown would sometimes do IVs, too, to break a stalemate.

    Liz, this is just my fellow patient perspective of all this. Resistence to the biologics is a very different thing from the above. With the biologics (like Humira or Enbrel), they are often prescribed with a drug like methotrexate to prevent the body developing antibodies against these drugs so that they lose effectiveness.

    Perhaps others can add more to my explanation above as they understand your question, which is a very good one, by the way.  😉 You're really doing your homework and this is so important on this path.

    Peace, Maz

    #341193
    ekrueger
    Participant

    Maz,

    Once again, thank you for your prompt and thorough reply. I know that you are not a medical professional but that's fine with me because it helps me more to hear stories from “real” people. People who have been down the path and back again and who can give a voice to what it actually feels like to have RA as opposed to a clinical picture painted by a doc who's never felt the pain from the disease. Just like in my job in physical therapy, there's the way we all learned that patients would respond to certain treatment modalities and then there's the way that the ACTUALLY respond.
    This whole thing is so overwhelming and I have so many questions that I don't know if anyone can really answer because my situation is so different. It's not often that you get a foretaste of what COULD lie ahead. I say could because I'm hoping I never get RA though I am doing everything I can to prevent it. As you may know, I am taking 100mg minocycline twice a day on M W F. I am wondering if that's enough. I know I don't have symptoms but I've read that initially, RA patients are put on mino 5 days per week and do IV's and all of that and then go on a maintenance dose. I'm wondering if the dose I'm on is enough to prevent anything from starting. I also wonder about the future regarding having another baby. I have one and wish to have just one more. I plan on waiting until I'm through taking the mino (11 1/2 more months) to start trying. But…I'm so fearful RA will rear it's ugly head 5-6 weeks after the pregnancy and I won't be able to take care of my kids, etc. I guess I probably shouldn't worry so much but I can't help it. I feel a little jipped as far as childbearing goes b/c none of my friends are so much as thinking about getting RA from having a beautiful kiddo. I know you can't take mino while breastfeeding, which is very important to me. I nursed my first for one year and wish to do the same with the next. I guess time will tell what my future is though I hope it's a good one. I can't say enough how much hope this site and volunteers like yourself have given to me should I have to face the disease one day.

    Thank you!

    Liz

    #341194
    A Friend
    Participant

    Liz,

    I was one that would probably have benefited from rotating antibiotics, perhaps briefly.  However, my biggest (unknown) problem was that my body apparently was not able to detox the acidic wastes from all sources during the 7 years of feeliing really well, and these wastes apparently had gotten stored in fascia and bone. 

    Once I finally realized why — after doing so well for 7 years — I was drifting downhill, getting worse and developed constant pain was because of acidosis, addressing the problems causing this has allowed me to be back on brand Minocin and I have been doing very well since early 2007. 

    It wouldn't surprise me at all, if acidosis is not the cause of the problem of many with FM/CFIDS (and other rheumatic diagnoses) and their very painful points in their body:  the storage of acidic wastes that they are unable to detox.  In many people with rheumatic diagnoses, they have problems with cytokines being involved causing extreme problems. 

    The following site has been around for a number of years, but it has some interesting information in it about rotation of antibiotics. 

    http://www.rense.com/general7/microplasm.htm
    There is really quite a lot of interesting information on the subject about mycoplasma and rotation of antibiotics, etc., and why it is sometimes good to do this. (This is toward the back portion of the article.)  I believe most of this is from Dr. Garth Nicolson, but the article will let you know the source. 
     
    If you click on File, then click Print Preview, you can view the  page numbers with the headings and information in this paper.  In this paper, the audience seems to be primarily CFIDS/FM.  
     
    AF
     

    #341195
    ekrueger
    Participant

    Hi there,

    What is CFIDS? Just curious. So how did you find out you had issues with acidosis stopping your progress? 

    thanks,
    Liz

    #341196
    A Friend
    Participant

    Liz[user=1992]ekrueger[/user] wrote:

    Hi there,

    What is CFIDS? Just curious. So how did you find out you had issues with acidosis stopping your progress? 

    thanks,
    Liz

    Liz,

    CFIDS stands for Chronic Fatigue Immune Deficiency Syndrome (I believe that's correct).  It's my understanding that physicians can tag a patient with this syndrome if certain criteria are part of their presenting problems.  (I personally believe those of us on this board might even be put in this classification, by other than our AP physicians who are not familiar with Dr. Brown's work.) 

    About how did I find out I had issues with acidosis stopping my progress, the following problems (#1 and #2) were noted at various periods of time during my years of chronic illness.  (This stops my progress and anyone's, because nothing in the body can work as it should IF the body is acidic.  In an acidic body, more and more organisms multiply… including viruses, bacteria, parasites, fungus, candida, and who knows what!!!)

    At about the times listed below, when the following problems appeared, I did not realize they were part of a problem of acidosis in my body.  To further cloud these issues, I was following what I understood was a “squeeky-clean” healthy diet, which made me never question whether my diet could be part of my problems.  Once I experienced #2 below, and felt I had to get off Minocin, I began eating occasional meat again, thinking it was ok, since I was not on the -cycline drug, as mentioned by Dr. Balch about the toes/gout-like symptoms. 

    1) After I had been on AP for about a year, I began having very painful toes, where they connected to my feet.  The pain got so bad, I had difficulty even walking, and was about to have to get a handicapped parking tag.  (I'd discussed this with Dr. S in Ia. when I'd been there, and while sympathetic, he had nothing to suggest.  After that visit, I began searching for answers, and finally found in  the book “Prescription for Nutritional Healing” by Dr. Balch (a urologist) and his Clinical Nutritionist wife Phyllis, where he wrote that if one is having gout-like pain, and if he is on tetracycline-type medications and eats meat, these two can cause gout-like pains.  Well, I thought, I'm not about to give up my Minocin, so I immediately stopped eating any red meat and pork.  Immediately, every day for the next 10 days, the pain in my feet/toes was less and less until it was gone.  And stayed gone.  (Six months later, when I again went to Iowa, I told Dr. S what I'd learned and experienced, and he seemed very excited about it; and said that information could help a lot of patients. 

    2)Later…. I had been doing really well for about 6-7 years on AP when our city had an epidemic of flu-like symptoms, some schools closing, many people ill.  My spouse had it, and was given abx for 10 days.  At end of this period, he was still ill, and his physician prescribed another 10 days.  He was coughing, sneezing, (and not very careful), but amazingly, I did not become ill.  (I seemed to remember that Dr. Brown or someone mentioned in “the” book that people on AP often do not get sick. 

    HOWEVER….. after this epidemic was over, I began to notice that I had some pressure between my breasts, and had a tiny little cough occasionally.  This continued a long time, and knew this was not normal.  And each time I saw my AP physician at that time, I mentioned it.  He said it was probably allergy.  I said I didn't have allergies.  (This repeated itself for 2 more visits; and then I decided to seek a 2nd opinion from another AP an hour away.  He found the problem very quickly, and the lab test showed it was C. pneumoniae (that's what the community epidemic is all about, and C. pneu.  a community-acquired organism (only a husband-acquired in my case from his sneezing/coughing). 

    The new AP put me on zithromax on alternate days and minocin on others. [On hindsight… how acidic were these????]  Very soon, I began developing sciatic-like pains in my hips/buttocks (I looked up my symptoms, had never had this before).  Then one morning I got out of bed, and had a “lightning-bolt” attack of unbearable pain that just would not go away, and lasted 2-3 weeks.  [My body was telling me in no uncertain terms: DON'T TAKE THAT ANY MORE !!!] Since I'd already had to see an oncologist in 2000, a physician family member thought I needed to see the oncologist, rather than my AP, for follow-up.  I was put on Bextra to be able to even get out of bed, and it took 30 minutes for the Bextra to take effect.  It was not the Big C, thankfully, but I had to stay on Bextra until the pain was manageable.  I was also asked to get off of all medications and supplements.  This was when I got off all abx, and did not resume Minocin until late 2006 or early 2007.

    After I had gotten off of Minocin (and all meds) I drifted downward, not feeling well at all — but afraid to resume because of the horrendous pain I'd experienced.  Finally, the end of 2006, when my AP could find no reason for my problems and found nothing on my labs (but overlooked some things) an acquaintaince who was an N.D. asked me to test my pH to see how acidic I was.   That was the beginning (FINALLY) of finding the answer to some longterm problems! (The pH strip said I was between 5.0-5.5.  Not good.) 

    After learning all I could about acidosis, pH, eating right for my Blood Type A, Magnesium deficiency in the pathogenesis of disease [a book on this revealed mag defic. can even cause metastatic bone lesions, which explains what caused my scans to look like they had], etc., etc., etc. and getting my pH better, when I saw Dr. K, she  suggested I get back on Minocin.  And now… thankfully…. prayerfully…. everything seems to be coming up ROSES! 

    Hope this long narrative is helpful to you and others. 

    AF 

     

    #341197
    ekrueger
    Participant

    Wow!

    I wonder how common that is?? So are you in remission currently?  What do you think of the blood type diet thing? I have a friend who swears by that book.

    Liz

    #341198
    A Friend
    Participant

    [user=1992]ekrueger[/user] wrote:

    Wow!

    I wonder how common that is?? So are you in remission currently?  What do you think of the blood type diet thing? I have a friend who swears by that book.

    Liz

    Liz, to answer your questions:

    I think high acidity and magnesium deficiency are extremely common, perhaps in everyone who is chronically ill (from the tons of reading I've done on this subject); and probably most are magnesium deficient.  The more dairy people consume, the more of the needed magnesium is used up.  Dairy does not build bones, but depletes them, for it causes magnesium to have to be paired with the extra calcium, when magnesium is needed for other functions, i.e. neutralizing acids, and enzyme functions.   

    In my own case, I believe the blood type diet for me is “dead on.”  Blood Type A typically is deficient in hydrochloric acid, needed as part of the immune system to zap germs and to break down meat protein/food for digestion.  There are also properties in blood type A that respond negatively to certain foods.  The books by Dr. D'Adamo include the science of these problems.  Once I came face to face with my pH numbers, I guess you could say, “I left no stone unturned” to turn things around.  I didn't purchase the “Eat Right for Your Blood Type”, but got the “Cook Right for Your Blood Type”, which also has the scientific parts in it, too, along with food lists for all blood types. 

    About your question as to whether I am in remission.  Considering everything I've experienced medically, I believe my present program and what I've learned will help my health “scales” stay balanced.   For me, I'm not sure what would constitute “remission.”  My best guess would be a “yes.”  Those first RA type pains, etc. where I couldn't raise my left arm higher than my shoulder have been gone since the first 4 months of AP, and during the ensuing 7 years.  My mycoplasma tests were normal when retested about two years after beginning AP.  What I've been overcoming since then, I believe, is 1) damage done by yeast/fungal overgrowth from the two years of abx without any probiotics; and 2) the damage done by  the acidosis condition. 

    Over the years, I've had a very healthy life style which I believe has helped me survive in spite of everything that's gone wrong.  However, because even my highly respected physicians let me fall through the cracks (i.e. two years of constant abx, not AP, and not recommending probiotics and my not knowing about them, led to serious systemic overgrowth problems that I believe have effected and affected my longterm consequences.  Because my bone scans (re-done in late 2009) look much better, I'm encouraged that I'm making progress and not just treading water.   

    You saw from the long previous narrative that I was a slow learner on this subject  of acidosis and what was going on in my body. (But, hey, I'm not the one that went to med school!  It takes me longer.)  Many things can cause acidity in the body besides food and digestive capability.  But, thankfully, now I think I've got it!  Thank heavens for the internet, and being able to more quickly find information! 

    AF

    #341199
    ekrueger
    Participant

    A Friend,

    It's great to hear that you are in remission. Question: what protocol of antibiotics were you on for the two years you didn't have probiotics? I just started the M W F 100 mg protocol of minocycline and I am awaiting my shipment of probiotics in the mail. What type of “issues” are you left to deal with as a result of not having the probiotics?

    Thanks,
    Liz

    #341200
    A Friend
    Participant

    [user=1992]ekrueger[/user] wrote:

    A Friend,

    It's great to hear that you are in remission. Question: what protocol of antibiotics were you on for the two years you didn't have probiotics? I just started the M W F 100 mg protocol of minocycline and I am awaiting my shipment of probiotics in the mail. What type of “issues” are you left to deal with as a result of not having the probiotics?

    Thanks,
    Liz

    Liz, the two years you are referring to are the first two years of chronic illness.  I wasn't on any type of protocol, and had never heard of AP, Dr. Brown, or even suspected that all of this would eventually lead to a dx of a rheumatic illness.  I'd always been very high energy… until I hit that brick wall. 

    After the first time I woke up very ill, received abx, I got to feeling better.  Then I would just suddenly become ill again.  This pattern happened because of a mis-diagnosis of TMJ 1 year or so before, that instead was an infection deep in my jaw bone — no tooth near it was involved.  Each time I'd become ill and have to see a doctor, I would be prescribed another abx, and would feel better for a couple of months or so, and then ZAP, another bout of fever, chills, and feeling terrible. 

    I'll have to look at the list of medications prescribed to tell you what I was on.  Fortunately, when this kept happening, I began to kept a diary of meds, dates, etc.  It was a real puzzle.  The recurring bouts of illness went on for two years; and only feeling better for a short while after the abx.  At the end of the two years, I had no energy at all, and felt like a lifeless vegetable.  I knew I had to find another way; and decided I would not take another round of abx. 

    That's when a lady who had just put in a health store (after she'd gotten her young chronically ill daughter well after a very long illness) took me under her wing, gave me a copy of Dr. Wm Crook's book to read, and wouldn't sell me anything until I read the book and understood what had happened to me.  That was the beginning of my feeling better…. but there's more to the story. 

    I believe the reason I got sicker all the time was because the abx had wiped out my good flora over and over; and the body cannot defend or repair itself without good flora and the B-vitamins and other important nutrients they manufacture.  So many of our gastrointestinal functions depend on these nutrients for good health and body function.  This is a huge part of our immune system.  If you will see the most recent post of mine about Dr. Leo Galland — and look at the response I gave to Trudi in the same thread — I believe all of this will pretty thoroughly explain the importance of probiotics and good flora.  (One reason I hadn't a clue about what was happening was I've never had what women think of as a yeast infection.)

    I feel like I've screamed this from the roof tops for several years, but I believe the majority of ill people don't realize just how important this is.  (I also believe the reason I was so handicapped in trying to get well is that I probably had a ton of acidic wastes from the yeast/fungal overgrowth that had happened systemically those first two years, and had poisoned my system … and long before I knew about Dr. Brown and AP, etc.  After I began Dr. Wm Crook's protocols, I felt the life force being awakened the first week.  I could tell I was finally on the right track.

    I'm going to see if I can find a previous post about this.  I've written this dialogue too many times!  Friends have suggested I write a book.  I laugh and tell them I've written it 6 times already.

    More later,
    AF

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