Home Forums General Discussion Tell Me Again!

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  • #307400
    2011Rio
    Participant

    Yes, please do, tell me again. Will I ever get to the point where AP is making some real progress for me. It really does work, right? I’m just having a down day. Got dumped this week because of RA!! πŸ™ So I guess it has me questioning my treatment.

    Diagnosed w/RA 2011
    Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
    metronidazole 500mg 1tab,3x a day M-F:
    doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
    Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
    vit c 2000mg daily; Actemra 10/2015-present (may come off since
    lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
    (weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
    fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

    #367751
    richie
    Participant

    Minocycline 50mg every 4th day ???? Awful low dose -barely therapeutic -that may well be slowing your progress
    richie

    #367752
    2011Rio
    Participant

    Hi Richie,
    Thank you for your input. πŸ™‚
    I can’t seem to do a higher dose yet, because I become very sick with the herxing, VERY!! I’ve heard others have had to work up to a therapeutic dose. It has seemed very confusing at times, that’s for sure.

    Diagnosed w/RA 2011
    Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
    metronidazole 500mg 1tab,3x a day M-F:
    doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
    Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
    vit c 2000mg daily; Actemra 10/2015-present (may come off since
    lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
    (weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
    fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

    #367753
    richie
    Participant

    Hi—I would think you have to find a solution –perhaps fight through the herx –I would certainly discuss this with your doctor –50mg every four days is not really any kind of dose –Have you at least tried 50mg every other day ??? –
    richie

    #367754
    2011Rio
    Participant

    Richie

    Before I started having some internal bleeding problems I had worked my way up to 50mg MWF. Then 2 to 3 wks before the bleeding was caught I had taken 100mg on M and 50mg on WF and I had also started Plaquenil or the generic. So I am trying to work into the 50mg schedule again. Right now is the least amount of swelling I have had in over a year and it was pretty much everywhere except my hips and back. I am still on Plaquenil 400mg daily, just to try and help me get to where I can function and get the antibiotics at a higher dose and get farther along toward being symptom free. If I’d take too much I’d hurt so bad everywhere that I almost can’t move, my strength is gone too as far as moving, walking, etc., I would also sweat, feel like I was gonna pass out and throw up, chest would hurt and my whole rib cage and i’d become extremely exhausted.

    Diagnosed w/RA 2011
    Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
    metronidazole 500mg 1tab,3x a day M-F:
    doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
    Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
    vit c 2000mg daily; Actemra 10/2015-present (may come off since
    lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
    (weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
    fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

    #367755
    richie
    Participant

    Hi–Sounds like a good plan –good luck
    richie

    #367756
    2011Rio
    Participant

    Thank you for your replies Richie…the support is encouraging. πŸ™‚ Enjoy your evening.

    Diagnosed w/RA 2011
    Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
    metronidazole 500mg 1tab,3x a day M-F:
    doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
    Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
    vit c 2000mg daily; Actemra 10/2015-present (may come off since
    lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
    (weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
    fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

    #367757
    PhilC
    Participant

    Hi,

    Consider switching to doxycycline and starting out with that instead. It doesn’t penetrate into the joints quite as well as minocycline, so the “herxing” is likely to be a little more tolerable. My own experience has been consistent with that; hopefully your experience will mirror mine.

    NOTE: There are two kinds of doxycycline– doxycycline hyclate and doxycycline monohydrate. Doxycycline monohydrate is supposedly gentler on the stomach and it’s available in doses of 50 mg, 75 mg, 100 mg, and 150 mg. It is also more expensive. If the higher cost is not an issue, it would seem to be the preferred form of doxy, especially if one needs to start at a low dose and slowly ramp up to the desired dose.

    Phil

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

    #367758
    2011Rio
    Participant

    Hi Phil….I didn’t realize you had posted, so thank you for letting me know. I was kind of wondering the same thing. I feel half way decent today. I’m gonna give it a little bit of time and if not better start considering switching. Thank you for taking time to share your knowledge and experience. I’m glad to know that I have not been the only person who has been so sensitive.

    Blessing,
    Tricia

    Diagnosed w/RA 2011
    Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
    metronidazole 500mg 1tab,3x a day M-F:
    doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
    Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
    vit c 2000mg daily; Actemra 10/2015-present (may come off since
    lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
    (weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
    fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

    #367759
    Anonymous
    Participant

    @PhilC wrote:

    Hi,

    Consider switching to doxycycline and starting out with that instead. It doesn’t penetrate into the joints quite as well as minocycline, so the “herxing” is likely to be a little more tolerable. My own experience has been consistent with that; hopefully your experience will mirror mine.

    NOTE: There are two kinds of doxycycline– doxycycline hyclate and doxycycline monohydrate. Doxycycline monohydrate is supposedly gentler on the stomach and it’s available in doses of 50 mg, 75 mg, 100 mg, and 150 mg. It is also more expensive. If the higher cost is not an issue, it would seem to be the preferred form of doxy, especially if one needs to start at a low dose and slowly ramp up to the desired dose.

    Phil

    Hi Phil thank’s for this suggestion πŸ˜‰
    waiting to fillet minocycline pellet capsules I decided to try doxy monohydrate. in Italy there EFRACEA (doxycycline monohydrate) 40 mg modified-release capsules,
    Because it may have fewer side effects on my stomach

    I hope that the dosage is not too low, because even if they can not take more than one capsule a day being modified release πŸ˜•

    #367760
    enzed
    Participant

    @PhilC wrote:

    Hi,

    Consider switching to doxycycline and starting out with that instead. It doesn’t penetrate into the joints quite as well as minocycline, so the “herxing” is likely to be a little more tolerable. My own experience has been consistent with that; hopefully your experience will mirror mine.

    NOTE: There are two kinds of doxycycline– doxycycline hyclate and doxycycline monohydrate. Doxycycline monohydrate is supposedly gentler on the stomach and it’s available in doses of 50 mg, 75 mg, 100 mg, and 150 mg. It is also more expensive. If the higher cost is not an issue, it would seem to be the preferred form of doxy, especially if one needs to start at a low dose and slowly ramp up to the desired dose.

    Phil

    That’s what I did Phil – I switched from Mino to Doxy monohydrate which I find really easy on the stomach. I couldn’t tolerate 50mg of Mino once a day, but can take 200ng of Doxy. I still herx but not as severely and not having the stomach problems makes keeping on with the treatment more realistic and achievable.

    #367761
    Anonymous
    Participant

    @enzed wrote:

    @PhilC wrote:

    Hi,

    Consider switching to doxycycline and starting out with that instead. It doesn’t penetrate into the joints quite as well as minocycline, so the “herxing” is likely to be a little more tolerable. My own experience has been consistent with that; hopefully your experience will mirror mine.

    NOTE: There are two kinds of doxycycline– doxycycline hyclate and doxycycline monohydrate. Doxycycline monohydrate is supposedly gentler on the stomach and it’s available in doses of 50 mg, 75 mg, 100 mg, and 150 mg. It is also more expensive. If the higher cost is not an issue, it would seem to be the preferred form of doxy, especially if one needs to start at a low dose and slowly ramp up to the desired dose.

    Phil

    That’s what I did Phil – I switched from Mino to Doxy monohydrate which I find really easy on the stomach. I couldn’t tolerate 50mg of Mino once a day, but can take 200ng of Doxy. I still herx but not as severely and not having the stomach problems makes keeping on with the treatment more realistic and achievable.

    Hi Enzed
    thank you for your testimony that is very useful for me…
    have you tried minocycline in the enteric coated formulation?

    I’m glad you’re doing well with doxy πŸ˜‰

    is also very important detoxification … fresh juices and vegetables :geek:

    #367762
    PhilC
    Participant

    @flower wrote:

    I decided to try doxy monohydrate. in Italy there EFRACEA (doxycycline monohydrate) 40 mg modified-release capsules,

    I would not have chosen that product. Can’t you get doxycycline monohydrate (doxiciclina monoidrato) in a form that is not modified-release? What about Doprovet? Is that available in Italy?

    Phil

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

    #367763
    Anonymous
    Participant

    @PhilC wrote:

    @flower wrote:

    I decided to try doxy monohydrate. in Italy there EFRACEA (doxycycline monohydrate) 40 mg modified-release capsules,

    I would not have chosen that product. Can’t you get doxycycline monohydrate (doxiciclina monoidrato) in a form that is not modified-release?

    Phil

    Hi Phil Why do not you convince the modified release?just might work? πŸ™„

    the choice was made for stomach problems that I have πŸ™„

    In Italy Doprovet
    is only used in the veterinary field 😯

    Phil thanks for all the great suggestions :geek:

    #367764
    PhilC
    Participant

    @flower wrote:

    Hi Phil Why do not you convince the modified release?just might work? πŸ™„

    the choice was made for stomach problems that I have πŸ™„

    It (EFRACEA) was not designed to kill bacteria. It may be gentler on your stomach, but it is also gentler to the bacteria.

    Doxycyline monohydrate, on its own, is supposed to be gentler on the stomach. I would have tried that in regular (i.e., not modified release) tablet or capsule form first.

    @flower wrote:

    In Italy Doprovet is only used in the veterinary field 😯

    I suspected that might be the case, based on the name, but I wasn’t sure since I don’t understand Italian.

    Phil

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

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