Home Forums General Discussion Does minocycline stop working after 9?

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  • #309506
    kathyo
    Participant

    Tindamax is best used in combo with other meds, so as not to build a resistance to it. So far, I have more energy, less headaches, but certainly not complete relief. It is a life saver in a way. Still trying to find the right combo.

    K

    #309507
    John McDonald
    Participant

    Dena,

    I am only into antibiotics for 4 years now so there is no way to know how I will fare at 9 years. But as you know I am pursuing a somewhat different path. I believe my disease is caused by bacteria, the slow dividing kind. I also think, based on the peculiar way that Minocycline works, that it is exceedingly hard for bacteria to develop a defense to it. But science knows that some already have. Minocycline penetrates right into our cells and cell nuclei. It interferes with the bacteria's machinery that makes proteins from bacterial DNA.  That weakens the bacteria by interfering with all of its activities such as maintaining its membranes, making defensive chemicals and metabolizing its food. Unlike most antibiotics, this attack is simple, amazingly effective and really hard to defend against.  The bacteria nearly needs to abandon its million year old machinery to defeat the Minocycline. But one simple defense is to simply pump the minocycline molecules right back out of the local area before they can bind to the machinery.  And some bacteria through evolution have learned to do this. That is one very good reason to change the antibiotics around from time to time to foil these clever little creatures. 

    Here is another twist. Nearly all bacteria keep their DNA in chromosome like rings called plasmids. We have the same type of structure in our mitochondrial DNA that we get from moms only, not from dads.  But nearly all species of bacteria are designed to share their plasmid DNA freely with any bacteria of any other specie that is nearby. So if after 8 years you happen to acquire a specie that has a defense against Minocycline then soon, so to can all of your mycoplasmas. In that way the RA, if not erradicated, can come roaring back. It is another argument for rotating antibiotics.

    AP grants us our lives back and gives us substantial and blessed remission. But it never seems to kill off the disease. So either the disease isn't really microbial or as I believe, the Minocycline cannot quite finish off the creatures. That is why I embarked on the MP in hopes that by my 9th year I will have completely eradicated the bugs. Obviously I cannot report that happy news yet (if ever) but I can repeat that AFTER reaching remission on AP, AFTER having no herxing whatsoever on 200mg of Minocycline QOD for months and months, I got a ferocious herx immediately on 25mg of Mino when I started MP. So unless there is a better explanation the new protocol was somehow many times more effective at killing the microbes.  That was in September 2005 and since then I have slowly been stairstepping up my doses of 3 antibiotics and each step still elicits new herxing in new tissues. Like I said, I can't report success, only the journey. But I must say it is suggestive that the microbes resist straight minocycline. It also may suggests that I may be a little insane to keep plugging along like this.  I don't know if MP is the final answer. I hope so. But if you buy the idea of microbial etiology then it follows that Brown's AP just doesn't kill all of the buggers.

    Finally, while I was on AP I worried about my gut flora and I took lots of probiotics. When I lapsed in August 2004 I got a systemic yeast problem. I too reasoned that I was susceptible to yeast because of the constant insult of antibiotics on my gut. But on the MP my gut did quite a bit of obvious healing in 1st and 2nd qtr 2006 at which point I quit taking probiotics altogether.  It turns out that I just don't need them anymore. But I am still taking antibiotics, not as much minocycline but adding to it two other powerful antibiotics. So I am still allegedly insulting my gut. Here is where Marshall claims that the yeast susceptibility is not due to Minocycline, but rather due to our impaired immunity that results from the bacterial infection. His claim is that if we rid ourselves of the bacteria then our macrophages will properly look after and kill the yeasties. I can't see what is going on inside me but given my experience his story sure sounds plausible to me.

    All good stuff to think about. As if we didn't have enough.

    john

    #309508
    Kim
    Participant

    John,

    Thanks again for another GREAT post!

    Your avatar…….what a sweet picture of a very proud father with his adorable daughter…….either that, or she is waaaaaay too young for you.:P

    kim

    #309509
    lynnie_sydney
    Participant

    Yes, agree.  John you are always so thoughtful in your responses. BTW my AP doc thinks mino has been great but not killing all my microbes either (because she thinks I have more than one sort). So, am on a couple more abx pulse dosing (plus diet to fix leaky gut as you know). Lynnie

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #309510
    jan h. pm crest
    Participant

    hi to everyone,

    😯 I am so confused after reading all these replies. I have been on minocin 100 mg. 2 x a day 7 days  week  for 7 years and the past year or so I have had more  back pain, hip pain, pain in ankles and leg aches, general body aches and have been stressed out to the point of PTSD. Nothing like our troops of course, but I am living in my own little war zone. (I have a bi-polar son who is 26 yrs old and living at home and a husband who doesn't want to understand) are you all saying it is probably because of the minocin? I don't have an AP doc, just one that will precribe the mino. If this is all true for me what do I do to help my situation? Now, I  know nnon of you are are docs, but please, give me your suggestions as to what to tell my doc, and/or something to print up to have him read. I'm sure he'd read it. He's a pretty good guy.

    help

    jan h

    #309511
    A Friend
    Participant

    [user=512]jan h. pm, crest[/user] wrote:

    hi to everyone,

    😯 I am so confused after reading all these replies. I have been on minocin 100 mg. 2 x a day 7 days  week  for 7 years and the past year or so I have had more  back pain, hip pain, pain in ankles and leg aches, general body aches and have been stressed out to the point of PTSD…..(I have a bi-polar son who is 26 yrs old and living at home and a husband who doesn't want to understand) are you all saying it is probably because of the minocin? I don't have an AP doc, just one that will precribe the mino. If this is all true for me what do I do to help my situation? Now, I  know nnon of you are are docs, but please, give me your suggestions as to what to tell my doc, and/or something to print up to have him read. I'm sure he'd read it. He's a pretty good guy.  help  jan h

    Jan, first let me tell you how very sorry I am that you seem to have been battling your own health problems and those of your son, feeling no one understands.  Well, I believe you've come to a place where many will understand and, possibly, have experienced such as you are experiencing with AP treatment for yourself. 

    It is very possible that your dosage of twice daily every day is simply too much for your body to cope with.  For the first 7 years on AP, I did really well (and was on Minocin 100 mg twice daily on M-W-F) but even during the first year I had to make dietary adjustments (beyond keeping the sugar, processed foods, and other junk foods out.  I would never have been able to tolerate twice daily every day.  

    In addition to a really good-sounding diet, I also had to get red meat and pork out, or it caused my feet to be very painful.  Just this maneuver had the pain leaving daily; in about 10 days, at that time, this worked. (However, I now know that I was just “staying afloat” pH/acidosis-wise.  Eventually, my body  was not able to compensate and neutralize enough of the acidic waste being generated and stored in my body.  The last year or two before I  learned about my body's very acidic condition, I had gradually increasing fascia (all over my back) and even severe bone pain.  All of this was found to be relieved for a few days when I did a trial (per my medical doctor's suggestion) of taking one teaspoon of baking soda stirred into a glass of cool water, every waking hour.  My doctor said take this two days for the test.  Two days virtually got rid of the fascia pain; however, it took the third day for the bone pain to be relieved.  This was proof (to him, he said, and to me) that acidosis was the cause of this pain. 

    The above condition has a number of causes.  Some of the things that generate all of this acid waste in our body are:  medications; chronic stress; lack of oxygen in the cells if/when they become anerobic, instead of aerobic as they should be; candidiasis; die-off of organisms addressed by abx, creating acidic waste and neurotoxins; build-up of fungus in the body (most people can have this if they do not have an anti-fungal in their regimen and do not take probiotics to replace the good flora. 

    With your being on overload mentally and physically right now, I'm wondering if you know of a very reputable ND or Certified Clinical Nutritionist in your area to guide you.  If you have to learn all of these things now when you are already so stressed, this will add more stress…. which you don't need.  If you will go to http://www.needs.com, you can leave a message requesting a “complementary health counselor (free)” call you.  I know Needs is a business, but they've had a reputation for years and years of being very knowledgeable of our problems.  Dr. Sherry Rogers, in some of her books, has written about Dr. Garth Nicolson's work with AP, Arthritis Trust's, and that of Dr. Brown's.  One book that you might want to order is “Painfree in Six Weeks” — although Needs is aware of what Dr. Rogers recommends, and in some cases, Dr. Rogers has updated her own protocols recommended.  I've only used this service once, and I was very, very happy about the information.  (Dr. Rogers' books are not available from most book stores, but can be ordered from:  http://www.prestigepublishing.com and from http://www.healthybynature.com — and just remembered, Needs carries them, too. If you engage an ND or CCN, you might ask them if they are aware of her work.  Dr. S. Rogers had five medical degrees — she says during interviews on radio that she had to get all those degrees in order to get herself well a number of years ago. 

    Bottom line, right now, you might try the Bicarbonate of Soda test for two to three days and see if that helps — to know if acidosis is your problem and this testing relieves your pain even temporarily.  Turning the body's acidic state around takes a long time, but at least you will know what you need to work on.  (Bicarbonate of Soda has in the recent year or so been said to dissolve cancerous breast tumors in the patients of an Italian oncologist.  The video interview with him (Dr. Simoncini has also written a book on this) by Doug Kaufmann can be viewed on Doug Kaufmann's web site.  I only saw this interview the last several months, long after I did the 3-day soda testing; but, it was another ahaa moment for me.

    Also, if you are familiar with pH testing and the strips with which you measure your pH, I'd suggest that you follow the directions for using them (including the time recommended before or after meals), just to see if you are very acidic. 

    Another thing, if you will put your cursor arrow in the little search window at the top of the screen, you can find much on the subjects of acidosis, pH balance, candida, fungus. 

    Keep your faith and don't despair!  You will never be left alone.  Mom's have to put on their own “oxygen masks” so they will be able to take care of their children.  It wouldn't be surprising if the causes of his condition are not related to some of the same causes of your own.  It's amazing what research is bringing together. 

    God bless, AF

    PS  I really hate to add more to this already long reply, but I re-found the following information this past week, and I believe it to be tremendously important for, perhaps, the majority of us!!!  http://www.diet-and-health.net/supplements/phosphatidylCholine.html
    Hope you will read all of it, and especially note the 2nd paragraph beginning “Phosphatidylcholine (PC) is one of the most important support nutrients for the liver ”  and continue reading this to the end of the article.  (Supporting our liver during all of the treatment is vital, as the liver is responsible for our detoxification system.  Note that a minimum amount taken is recommended daily; and that this significantly speeds up recovery of the liver.) 

    #309512
    lynnie_sydney
    Participant

    Jan – I am very sorry that you are having such a rough time. It may well be your gut as A Friend says. But with a condition such as CREST, the way I would ensure that I was 'putting on my own oxygen mask' would be to seek out the best AP doc I could. Maybe now is the time to find one, rather than continue to struggle on alone, just with a mino rx. For details of AP docs in your area,  please email: apdoctors@roadback.org And then I'd post on the Board, particularly asking SD/CREST people to give you their various experiences – docs-wise and other. Members can PM you any doc's full name. Lynnie   

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #309513
    jan h. pm crest
    Participant

    thank you, thank you AF and Lynne for your replies. especially AF, your information is very much appreciated and I will read it all.

    unfortunately, Lynne, I don't think there are any AP docs in my area. there might be in a neighboring city but he's not on my insurance. I live in Salt Lake City.

    bless you all

    jan h

    #309514
    A Friend
    Participant

    [user=512]jan h. pm, crest[/user] wrote:

    thank you, thank you AF and Lynne for your replies. especially AF, your information is very much appreciated and I will read it all.

    unfortunately, Lynne, I don't think there are any AP docs in my area. there might be in a neighboring city but he's not on my insurance. I live in Salt Lake City.

    bless you all

    jan h

    jan h, I wrote the things in my long post to you because of the nature of your painful symptoms (and the probable causes of these) that can possibly be helped by some of the things shared with you.  Hopefully, some of these things will give you some relief.  I, like Lynnie, hope you will be able to see one of the really good AP physicians to help with your Crest treatment.  This is a diagnosis that I believe you definitely need a knowledgeable AP doctor to be involved with you.  But, in the meantime, hopefully you can work on a few things discussed and, hopefully, these can address some of your painful symptoms and make them better.  Please try to be optimistic, relax, and breath deeply as often as you can remember.  Best to you…AF

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