Home Forums General Discussion Mino or doxy?

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  • #455797
    worldofme
    Participant

    Which is better consider being on humira for axial arthritis spine.

    Spoke to Id said take trimethoprim plus doxy or mino. I have 6 months of supply.

    Which is better to take while on humira?

    I want to avoid drug induce lupus.

    Please response .

    #455798
    worldofme
    Participant

    Goal is stop humira after few shots at least from Id point…rehum hates idea of antibiotics he wants me to take humira for 6 months…no way.

    #455800
    richie
    Participant

    Axial arthritis is not really a diagnosis rather it just means arthritis in a joint –whether its osteo -AS –RA etc is a dx –sounds like your doctor is just looking for a label !!!

    #455801
    Maz
    Keymaster

    Which is better consider being on humira for axial arthritis spine.

    Spoke to Id said take trimethoprim plus doxy or mino. I have 6 months of supply.

    Which is better to take while on humira?

    I want to avoid drug induce lupus.

    Please response .

    Why are you afraid of drug induced lupus, Worldofme? It’s not a very common side effect of minocycline and can occur with Humira, too (see package insert for MS and lupus like reactions). In fact, it’s easy to monitor bloods for drug induced lupus intermittently, if worried, generally occurs after a long period of time, if it’s going to occur, and reverses when the offending drug is stopped.

    What does LD mean? Lyme Doctor?

    #455803
    worldofme
    Participant

    Will doxy not work as safe choice? Why is mino more prefer? ID doc has no clue he just gave me the script because I asked for it and told him it helps with arthritis.

    Axial arthritis is a label for aka…spine pain.

    Listen Lupus / MS – I don’t want it. Who wants that?

    It’s still pain going through.

    My Flagyl stopped working on me. Why?? How do I get flagyl to work again?? Could Anaerobic become resistance?? Aren’t Anaerobic have diff cell wall?

    I don’t knot but whatever is my cause is bacterial for sure.

    i have two things going on according to ID…Urethritis / prostate – ReA & AS as result. Rehum says Take Humira for all of it and no antibiotics.

    Not sure why do rehum hate antibiotics so much?

    #455805
    Maz
    Keymaster

    Will doxy not work as safe choice? Why is mino more prefer?

    Doxy is a safe choice, too. Minocycline is preferred, because it has superior tissue penetration. See FAQ# 10 here: https://www.roadback.org/faqs/

    Listen Lupus / MS – I don’t want it. Who wants that?

    Yes, but my point was that a lupus-like or MS syndrome is included in the Humira package insert in the warnings. So, when patients are warned about DILE with minocycline, they should also be warned about this potential with Humira. I don’t mean to say that no one should use this drug – just that the DILE thing with mino is quite rare and can also occur with Humira. See following link and scroll down to where it says, “What Should I Watch For AFTER Starting Humira?”: https://www.humira.com/

    My Flagyl stopped working on me. Why?? How do I get flagyl to work again?? Could Anaerobic become resistance?? Aren’t Anaerobic have diff cell wall?

    It is hard to offer any insight on this without some description of how long you’ve been using it and what type of dosing schedule you’re on. If it’s recently been re-started, then it’s possible for herxing to occur, which means an exacerbation of existing and possibly some new symptoms. See FAQ# 20 here: https://www.roadback.org/faqs/?faq-category=35

    Not sure why do rehum hate antibiotics so much?

    I don’t think rheumies hate antibiotics. It’s just that the conventional view of autoimmunity is that it is “idiopathic,” meaning no known cause. When rheumatic patients are using immune-suppressant medications, the risk of infection is significantly increased, so from this paradigm of thought their fears are rightly justified, arising from the need to reserve antibiotics for the episodic infections that can overwhelm an immune-suppressed patient.

    #455809
    worldofme
    Participant

    Reason for my main concern is just that, both drugs can cause ms and lupus.

    Wouldn’t taking mino with huMira increase my chance of ms or lupus ? Or am I thinking too much?

    #455810
    Maz
    Keymaster

    Reason for my main concern is just that, both drugs can cause ms and lupus.

    Wouldn’t taking mino with huMira increase my chance of ms or lupus ? Or am I thinking too much?

    I see, Worldofme. Thing is, drug induced lupus can happen with a wide array of drugs, including BP meds, anti thyroid meds, some rheumatic DMRDs, biologic drugs and some antibiotics, including minocycline. However, drug induced lupus occurs in people with certain genetics and acetylation issues (difficulty metabolizing causative drugs). So, if a person is going to react in such a way, there is no way to predict this with any certainty in advance. The upside is that if a person does get drug induced lupus, it clears up quickly after stopping the offending drug and does not cause real lupus; rather, it is a drug reaction in other words. I haven’t seen studies on whether chances of getting drug induced lupus are increased if on two drugs that may cause it, but I guess anything is possible.

    If it helps to allay your concerns, in the past 10 years, I’ve only talked with 5 or 6 people with confirmed DILE from mino on this forum and thousands of people have passed through here during this time. There may be more who never shared it here, but the odds are much greater that it won’t happen.

    FAQ# 17 has some links that are worth looking at, too, to learn about DILE, it’s mechanisms and incidence:

    https://www.roadback.org/faqs/

    #455811
    richie
    Participant

    I think DILE is vastly overblown and certainly a rarity –I take 200 mg daily of the brand of minocycline for 17 years –Thats about 10450 capsules -no DILE and certainly no concerns about it –the issue is so overblown –TO WORLD –if you want to get yourself better -stop worrying about the unimportant things –make a decision or make a plan and go with it !!!!! DONT WORRY ABOUT LITTLE THINGS OR WHAT COULD BE __DEAL WITH THE WHAT IS !!!

    #455812
    worldofme
    Participant

    Would doxy 400mg equivalent to mino 200mg a day.

    #455813
    richie
    Participant

    No -you should not go this route –either doxy or mino there is no such thing as an equivalent dose –After being around here for lots of years I can generally spot winning approaches and or losing approaches —winning means you beat the illness and losing means the illness just doesnt get any better -its really as simple as that !!! I tell the story of going to a scleroderma foundation meeting years and years ago before I started -Some stuffy doctor gave a talk –Every one scoffed at the antibiotic approach including the doctor –I looked around the room –plenty of wheel chairs -shiny tight faces and hands no lips etc etc –I say to myself THESE PEOPLE SCOFF AT ANTIBIOTIC -They sure as hell dont have anything better –That still holds true 17 years later -they are still anti-antibiotic and the doctors who were against antibiotic -still are and those people are still suffering -if they are still alive –AS a case in point I believe it was the Pres of the Scleroderma research foundation who passed from scleroderma –to her last days she did not believe in antibiotic —–Many folks get in touch with me -I suggest what got me better –if they dispute it –I dont argue -I dont try and sell this approach I just say ” do whatever you want ” I dont waste my time –there are other people who are very interested –I have patience for them —-I tell you this for one reason –Make a plan –stick to it for at least six months –go in one direction not twenty directions –in my opinion thats the start of a winning approach and thats what you need !!!!!!!!!!!!!

    #455814
    richie
    Participant

    Another point –for your prostate problems —that takes a urologist not someone who is treating your “Axial problem ” Sounds to me you need a urologist or internist for this problem —you mentioned a sulfa based antibiotic you are taking –that drug is older than the hills –much better is available for the prostate -a specialist is more up to date

    #455817
    Calida
    Participant

    I tell the story of going to a scleroderma foundation meeting years and years ago before I started -Some stuffy doctor gave a talk –Every one scoffed at the antibiotic approach including the doctor –I looked around the room –plenty of wheel chairs -shiny tight faces and hands no lips etc etc –I say to myself THESE PEOPLE SCOFF AT ANTIBIOTIC -They sure as hell dont have anything better –That still holds true 17 years later -they are still anti-antibiotic and the doctors who were against antibiotic -still are and those people are still suffering -if they are still alive –AS a case in point I believe it was the Pres of the Scleroderma research foundation who passed from scleroderma –to her last days she did not believe in antibiotic —–Many folks get in touch with me -I suggest what got me better –if they dispute it –I dont argue -I dont try and sell this approach I just say ” do whatever you want ” I dont waste my time –there are other people who are very interested –I have patience for them —-I tell you this for one reason –Make a plan –stick to it for at least six months –go in one direction not twenty directions –in my opinion thats the start of a winning approach and thats what you need !!!!!!!!!!!!!

    Wow, Richie, that’s a powerful picture you painted! Thanks for sharing that because people really need to hear it.

    I’ve found that scenario the most difficult to deal with on this journey as I’ve grown very fond of many of my fellow scleroderma patients. Reading posts at the support site that describe their worsening symptoms as they try med after med and eagerly await completion of studies and FDA approval for the miracle drugs that are “just around the corner” is very painful. AP is available NOW. I and others remain active members of that group because keeping that option visible and viable for the newly diagnosed is important. But it’s difficult, no doubt about that, especially with the ridicule from those who will continue to grow worse but feel they know better.

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #455818
    richie
    Participant

    Hi You have much more patience than me in keeping active in that other group –I salute you !!! If you can get even one person interested its worthwhile –

    #455819
    Calida
    Participant

    ….My Flagyl stopped working on me. Why?? How do I get flagyl to work again?? Could Anaerobic become resistance?? Aren’t Anaerobic have diff cell wall?
    I don’t knot but whatever is my cause is bacterial for sure.
    i have two things going on according to ID…Urethritis / prostate – ReA & AS as result. Rehum says Take Humira for all of it and no antibiotics…..

    Worldofme, the following link came across my screen and I thought of you when I saw the quote below….

    Dr. E’s Biofilm Protocol for Lyme and Gut Pathogens
    http://www.advancedhealing.com/biofilm-protocol-for-lyme-and-gut-pathogens/
    The number of human diseases shown to be associated with biofilm is ever expanding and includes:
    **Chronic bacterial prostatitis**
    Chronic rhinosinusitis (chronic sinus infections)
    Cystic fibrosis pneumonia
    Infective endocarditis
    Periodontitis
    Recurrent otitis media

    I don’t know anything about Dr. E so buyer beware if you choose to read the page. But his biofilm info was pretty good and it may explain your problem with Flagyl. Biofilm protects the colony of bacteria in situ – in your case, the prostate and urethra – and confers an antibiotic immunity upon the colony. In the meantime, biofilm is known to trigger flares, periods of intense inflammation (see Temple U’s School of Medicine study http://www.sciencenewsline.com/articles/2015070620190044.html) and the antibiotics can’t get at the little buggers. They were under attack as you were hitting them successfully with the Flagyl so they created this protective dome. Now they can still trigger the inflammation but the Flagl is useless. That’s where the Lyme docs come in because they’re up on the latest biofilm warfare.

    Biofilm colonies may be the common thread that connects your disparate symptoms. I agree with Richie, get checked out by a urologist but continue to focus on hitting the free bacteria with mino and get a Lyme doc to help bust the biofilm. Be prepared for a bumpy ride. As the biofilm busters dissolve that protection, large amounts of bacteria are freed and that’s when the mino hits them. It creates a messy battlefield within your body with lots of carcasses that need to moved out quickly. That’s where the detox measures you can read about here come in handy.

    Keep it simple. Stick with the mino and get a Lyme doc to help you bust the biofilm. It requires a great deal of patience but many of us here are living proof it works.

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

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