Home Forums General Discussion A question on Tetracycline Family / Marolide family – Maz ???

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  • #467067
    susanmary
    Participant

    Hi – been awhile although I check in though .Try keep this simple. Did years of research “book” ear marked and underlined beyond belief ! Maz I posted a LONG time ago i found an dr (australia) and gave her all info. Did very very well for 106 weeks on MINO with regular blood tests till BANG out of blue liver enzymes went ballistic. Dr and I did very very careful elimination of everthing till no doubt left was caused by MINO 🙁 BUMMER.
    Tried Doxy – no help.
    I’ve just been trying to put up with the pain 18 year in now.

    I know stacks about diet supplements probiotics etc – not being smarty pants just trying to not waste your time. My bloods always showed up “ok” despite pain until 2 years ago (sound familiar) when I started getting speckled ANA. ANYWAY as my body falls apart more OPTHOMOLOGIST prescribed Doxy (I did not go into my history he wasn’t that way inclined!!!!) Doxy cleared severe lupus like dry eye MGD BUT developed the rash from HELL it didn’t subside so discontinued.

    I THINK my GP would be open to me trying Azithromycin or that family – HOWEVER she and I need guidance – would I pulse MWF which is what I did with Mino – but the dosage is different so would you Maz know or ANYONE the qty 2 a day ??? They come in 500mg tablets.

    Sorry if I sound desperate – i usually cope well but am running out of stem managing – I cannot talk to OPTHomolgist about it as he just wants me to get punctal plugs and my RHEUMY is absolutely lovely but mainstream and she doesn’t have a magic wand – the ONLY thing I trialled was PLaquenil this year and only lasted 12 weeks as had awful side effects .

    SO Sorry this is log winded – think just because eyes are a lovely add on that is extra stress SO IF DR gives me different script would you suggest I pulse amounts ??? I DO know its only general advice and you are all lovely but not Drs . My Dr did say to ask you all !!!! MANY Thanks Susan T

    #467068
    Lynne G.SD
    Participant

    Hi Sue,
    I know that if you have scleroderma that Zith works quite well.The dosage is 1 tablet for 5 days on then 5 off.I did that for a while as the mino and doxy were giving me very dark patches on my face.
    This was years ago so I don’t know if anything has changed.

    #467070
    Maz
    Keymaster

    Hi SusanMary! Yes I remember you from years ago. I’ve been prescribed both zith and clarithromycin at different times and tolerated them very well. As you likely know from reading the book, Dr. Brown employed different classes of antibiotics, depending on a person’s pathogen load. Clindamycin in IV and oral forms were used (described in Pulsed Protocol Doctor’s Packet on the site that you can print out for your doc). Unsure if you have roxithromycin in Aus but this has been studied in rheumatic diseases and also has some immune-modulating effects.

    Are your liver enzymes normalized again? Such a shame for that to happen after doing so well on mino. I get it.

    Would your kind GP be open to consulting with an experienced AP doc in the US? There are a few who come to mind who may help and could be worth trying for advice.

    Alternatively, have you looked into the CPN Help website protocols?

    CPN Combined Antibiotic Protocols (Drs. Sriram, Stratton, Wheldon).

    The CPN combined protocols are designed for autoimmune patients by these brilliant physician-researchers to provide broad spectrum scope in treatment and to help prevent resistance. Your doctor may also be able to connect with one of these specialists through that site.

    #467072
    susanmary
    Participant

    Hi Maz etall – awwwgh thank you for prompt reply. Yes my liver enzymes returned to normal literally 4 weeks after stopping “MINO” – (we had already carefully eliminated every vitamin etc etc etc out with no change to raised enzymes) I WAS DESPERATE for it to be something else . We did from memory a few months wash out trialed again and “for the love of God” immediately went up – SIGH SIGH SIGH

    I haven’t looked at CPN site but will. I can google to see if “other” tetracycline available in Australia other than Doxy. I did try Clarithromycin– macrolide but only pulsing and it didn’t work – I DO remember you probably saying it wasn’t enough – BUT by then my DR was moving ( TWICE) and I didn’t want to STRESS her anymore as it was under all my research and Road back print outs she said yes in first place because she has known me for the entire 18 years otherwise i don’t think she would have given me script !!!!!!

    I will look at CPN site but was wondering if anyone does the 3 day pulsing on any “Zith” and dosage- MY disease is a throw up of hands with 99.9 percent of Drs. However RHEUMY is saying yes she would put me in MCTD/arthritis rather than LUPUS although my Optho latched onto lupus stuff buthe was fairly closed on anything else.

    Oddly BUT as we here know things can work – I unfortunately got a bad staph infection after what was suppose to be minor ish surgery and copious antibiotics later – pain was so much better (infection took longer) – LOL – but not because as you know most you tell look at you like you are BONKERS at least thats my experience.

    The lovely Rheumy says ‘Oh yes it would have been because of their anti inflamatory etc effects – not that we would use them these days ” If you didn’t laugh you would cry – BUT she is an extremely hard working sweetie so I just let it go -you have to pick .
    your battles.
    do you pulse your doses MWF????? – it was such a great way – till it wasn’t. Its the different dosage amts MINO and Doxy were 50mg twice a day MWF

    AGAIN I absolutely know we are all just a help/support group NOT drs – Kindest of regards and hope you are still going well – Susan

    I DO NOT think my GP would connect with overseas but she would probably read what I give her – she did on my behalf contact a suggested other DR that works here BUT THAT did not bode well – so I’m being ULTRA cautious as i cannot afford to lose this GP .

    #467076
    PhilC
    Participant

    Hi Susan,

    Doxy cleared severe lupus like dry eye MGD BUT developed the rash from HELL it didn’t subside so discontinued.

    It’s quite possible that doxycycline did not cause your rash. It’s more likely that your rash was caused by one of the dyes in the tablet coating (or capsule shell). If you can obtain doxycycline without any dyes, or without any dyes known to cause allergic reactions, that’s another option you may want to consider.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #467077
    PhilC
    Participant

    Hi Susan,

    Doxy cleared severe lupus like dry eye MGD BUT developed the rash from HELL it didn’t subside so discontinued.

    It’s quite possible that doxycycline did not cause your rash. It’s more likely that your rash was caused by one of the dyes in the tablet coating (or capsule shell). If you can obtain doxycycline without any dyes, or without any dyes known to cause allergic reactions, that’s another option you may want to consider.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #467078
    Maz
    Keymaster

    The lovely Rheumy says ‘Oh yes it would have been because of their anti inflamatory etc effects – not that we would use them these days ” If you didn’t laugh you would cry – BUT she is an extremely hard working sweetie so I just let it go -you have to pick .
    your battles.
    do you pulse your doses MWF????? – it was such a great way – till it wasn’t. Its the different dosage amts MINO and Doxy were 50mg twice a day MWF

    Hi Susan,

    Regarding lupus and staph, I just read and saved this brand new research finding today! How’s that for synchronicity?

    Lupus Seems To Have A Close Link To Bacteria Lurking On People’s Skin

    Yes, some folks here have pulsed zith as you say. This is because zith has a pretty long half life and takes a while to break down. This is why just a few day course is used for strep throat in a Z-pack. You’ll find this sort of protocol outlined on the CPN Help website so hope that helps in terms of printing something out for your doc.

    #467079
    susanmary
    Participant

    Hi Maz – I’m definitely will do research on the site you gave me over the weekend.
    My recent Staph infection was unfortunately caused by the fact that I’m very allergic to elastoplast and even though I had a red tag on they made a mistake – so you can imagine what happened when we finally managed to realise and get it off – tad TRAUMATIC !!!!!
    I really appreciate the site name and link .

    Hi Phil – thanks for imput no pretty sure I’m allergic to Doxy – I’ve tried two brands available in Australia – I know even white tablets can have additives but I don’t think these do – I do know dyes ,fillers etc etc can cause lots of issues – but thank you for your imput 🙂

    #467092
    susanmary
    Participant

    Hi Maz – sorry to keep popping back up I suppose I sound a bit desperate 🙁 I did look at CPN site you kindly gave me – I think my GP will give me a script for a macrolide BUT even looking at CPN thoroughly and obviously they believe in combining – I really couldn’t see anywhere if its possible to just do one of the Macrolides as a trial.

    When I first developed the raised Liver Enzymes ( completely gone now) I after a long wash out started on a macrolide (Klacide) but I was only pulsing that as I had done with Mino ie MON WED FRID and it I THINK was 250mg only. I tried searching in this site for macrolide use only but couldn’t find “suggested” dose PLEASE be assured I totally get this is only from patient /support group info.

    Have you or anyone you know done 3 days a week of 500mg Macrolide ?? I also think GP would be willing to let me do an oral week or two course then switch to pulse ?? I know she won’t be wanting to liase overseas I know as much as she does about AB protocol( she did try to liase with a Dr D in Sydney it didn’t go well enough said) – I did originally give her all the printed out research on Road Back/Dr Brown which is how i came to get the script in the first place.

    I just thought I would ask if you had any “Suggested” doses like there is with Tetras . Mino is definitely out for me (liver) Doxy is out for me (tried twice rashes from hell did not subside with hanging in there lowering dose etc) At the moment with the add on of eye issues blocked oil glands – severe blah blah blah – I would be even thrilled to get THAT part of my body cleared up and kept clear.

    Maz – any thoughts of suggested dosage at all for an attempt at macrolide only ???? I could see as you said about Roxy availability here and I’m aware of dyes etc but I have a very sinking feeling my UNGRATEFUL body isn’t going to like yet another Tetra PITY .

    BTW When I was on the Macrolide I didn’t have a bad reaction recently when the operation went skew if( and i got terrible wound infection staph) I was on cephalexin a beta lactim family this did help eyes and pain IRONICALLY – HOWEVER it was mega dose and I wasn’t using it for any other reason 🙁

    Thank you for being so patient – Susan Mary

    #467093
    PhilC
    Participant

    Hi Susan,

    Do you have a diagnosis? What are your main symptoms?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #467094
    Maz
    Keymaster

    Hi SusanMary,

    The CPn site info really was to show how macrolides can be pulsed for autoimmunity caused by chlamydia pneumoniae, so wondered if that might help to share with your doc?

    People who use azithtomycin on this forum are prescribed a broad spectrum of doses, either daily or pulsed, and it really depends on a doc’s approach and the patient’s pathogen load – it’s more tricky when going blind to root causes. E.g., azithromycin 250mg twice daily for 5 days a week, or 250mg once or twice a day on Mon, Wed, and Fri. Lyme docs might dose 250mg twice daily every day for 2 weeks on and two off.

    If you have a copy of The New Arthritis Breakthrough, there is a chapter on titration of the dose to patient tolerance. So, as Dr. Brown would have done it, it’s a process where the doc might prefer to start “low and slow” and gradually titrate the dose higher to see how that is tolerated. Some docs want to see a good herx, because it’s an indication that the therapy is hitting the target, but then dial it back to patient tolerance.

    In the Pulsed Protocol Physician packet, you’ll find the rationale Dr. Brown ascribed to for his patients and how oral clindamycin, for example, might be pulsed once a week when patients were unable to get IVs. You might like to print off the PDF version for your doctor to read?

    Pulsed Protocol

    Dosing has a lot to do with patient tolerance, which is an unknown until one starts the therapy, but I certainly discovered from hard-won experience that it’s far easier to titrate up from a low dose than to have to dial it back in the midst of a big herx and resulting hypersensitivity.

    Some people do very well on antibiotics other than tetras, though sometimes it takes a bit of trial and error and what doctors refer to as “therapeutic probing.” E.g., Rheumatologists will do this all the time, regularly switching medications, as it’s not a given that every patient will respond well to a particular rheumatic DMARD or biologic medication.

    I understand this is vague, SusanMary. It’s very tough for folks who aren’t working with an experienced AP doc and have to try to navigate things. What might help in your decision made with your doc is to take into account that azithromycin has quite a long half life in the body, so when treating chronic mycoplasma infection, for example, low, pulsed dosing is sufficient and a common approach to AP to start.

    #467095
    susanmary
    Participant

    Hi Maz – Thank you – yes you are right in the confusion 🙂 I have over the years printed everything from the site :):):) Read the book so often its a beloved battered mess ! I will just have to go through it all piece by piece – seemed SO MUCH EASIER with the “tetras” dosing as they are no longer an option for me I will just have to work out. So thank you for your imput – really appreciated .

    Phil – I’m into my 19th year of chronic pain there is NO definite diagnoses – for years my bloods came back fine – now my ANA etc is starting to show – so Rheumy has said well you fall into MCTD/Lupus . I had very good success with Mino for 106 weeks but developed DEFINITE Dile – tried and tested very very carefully twice. Doxy didn’t work and then recently a few years later was given it for blocked eye oil glands( was NOT going to bring other things up with Opthamologist trust me he NOT that way) and developed the rash from hell – 2 different brands same result – ANYWAY – will just work once again through what I can do with Macrolides from Maz post etc etc . In Australia Drs are PARANOID about antibiotics so I am lucky to have a semi open minded long standing GP.
    My new Reumy is a very very hard working specialist but NO WAY is she going to get involved in antibiotic therapy and the previous Rheumy went ballistic so I didn’t go back for 3rd visit. I have been tested for Lyme etc etc etc – won’t bore you with that stuff 🙂 Thank you for imput though – Susan

    #467097
    susanmary
    Participant

    Hi Maz – just an update – have done a lot more research of macrolides and visited sites etc etc . I think I have a clearer understanding of the Macrolide dosing OR AT LEAST :):):) a starting point for Macrolide dosing – I am back to my GP in December so will have some hopefully helpful guides for her and we can decide on which one and whats available here. MEANWHILE I won’t mention it to the Rheumy not that she isn’t nice but because she isn’t pro AP and i don’t want her putting my doctor off by mentioning it in her report – oh deary me the woven paths we sometimes have to follow – thank you for all your help and I will report any progress :):):) Susan

    #467098
    PhilC
    Participant

    Hi Susan,

    If I were in your situation, the macrolide antibiotic I would choose is roxithromycin. The reason I would choose roxi is because its half-life is 12 hours — the closest to the half-lives of doxycycline and minocycline — and ideal for twice daily dosing. And because of the MCTD diagnosis, I would not use pulsed dosing except on a short-term basis, and only if it’s absolutely necessary. However, I would also consider using a hybrid approach — daily dosing with periodic break days on which the antibiotic is not taken. For example, twice daily dosing except for one day (e.g., Saturday) per week being used as a break day. Some doctors like to incorporate break days into the protocol to give the body a break from the antibiotic when daily dosing is used. When antibiotics are used on a long-term basis, that’s probably not a bad idea.

    Note: I am not a medical doctor, and this is not medical advice. I am just telling you what I would do if I were faced with a situation like yours, and my reasoning for doing so.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #467100
    susanmary
    Participant

    Hi Phil – thanks for email – yes absolutely know this forum is just helpful advice not Dr etc etc etc. Am I correct( just clarifying) in reading that you are saying IF it was yourself you would be doing daily dosing with a day or two off but NOT pulsed as in MON WED FRID ? My Gp was receptive originally because not only did I give her a STACK of written info etc she was happy seeing it was only 3 days a week not every day. Of course there is also all the different doses each antibiotic comes in so I have to work that out – I think she would be happy I think to do a week or two before going to pulsing – mmmmmmmmmmm I just have to be very careful not to alienate the ONLY GP here that is OPEN to antibiotics – so you are “suggesting” you don’t think pulsing a macrolide would be really worth it ???? Thankyou for any suggestions ( I also have to keep in mind I get raised liver enzymes for some BIZARRE reason very easily despite a very healthy diet , milk thistle etc etc and terrific probiotics ) thankyou Maz and Phil really helpful – I really prefer it to FB site IMHO only !

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