Home Forums General Discussion Need advice please

This topic contains 26 replies, has 7 voices, and was last updated by  lynnie_sydney 1 year, 3 months ago.

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  • #456101
    Rockin Annie
    Participant

    I haven’t been here for a very long time, of course due to feeling great. Now I do need some advice from u guys! At the beginning of April this year I came down with pneumonia and was very sick for 6 weeks. During that time on was on steroids and Augmentin duo forte and the doctor advised me to go off my abx doxy. The beginning of July I decided with the OK from my doctor to go onto Zithromax, 125 Ggms MWF in place of doxy, as we both thought a change would be good for my lungs as I have broncheictasis as well as RA. A couple of weeks ago I started with pain in my left foot and both wrists and know the pain also in my knees, it seems like my RA symptoms are coming back. I cannot get in to see my doc for 2 weeks so I have decided to go back on mino or doxy as well as the zith.

    QuestiOn is, am I on enough Zithromax and should I go back onto mino or doxy, my doctor is not an AP doctor just supports me on the road.

    I know that u guys r not doctors, but I would appreciate any feedback that you can give me. I don’t want to ever go back where I was before AP.

    Thanks Annie

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #456102
    Maz
    Keymaster

    Hi Annie,

    How great that you were doing so well and what a pain (literally) that the pneumonia re-triggered your symptoms. Agh!

    It’s late here and just off to bed, but if you wanted to re-start your mino (good idea!), then can’t see why you wouldn’t be able to add it back, in addition to the current pulsed azithromycin dose (did you mean 125 mg?). However, you might consider asking your doc if you can start back low and slow on the mino so as not to head into a big herx situation and gradually increase the dose to the maintenance dose you were on before. As you’ve been off the mino for several months now, this is a possibility. If you are using an old prescription, be sure to check the expiry date as anything over a year can be toxic with tetras.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #456104
    Rockin Annie
    Participant

    Hi Maz,

    Thanks for such a quick reply, yes it was such a shock to the system being so sick after feeling so good. Sorry, it was 125 mg of zith, it that enough as I have been on that dose for a few weeks now, maybe I should up it to the full tablet of 250mg. I won’t be seeing my doctor for a few weeks, so I will start myself on 50 mgs MWF of mino.

    Thanks for the advice on the expiry dates, also.

    Hope u r well and thank you again……Annie

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #456105
    Rockin Annie
    Participant

    Just looked at the expiry date and yes it’s out of date by 6 months (agh)

    Question, can I use my in date doxy and then go back to mino as I can’t get a script for a couple of weeks, do I need to have a wash out period?………Annie

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #456106
    PhilC
    Participant

    There is no need for a washout period when switching between mino and doxy.

    Phil

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

    #456107
    Rockin Annie
    Participant

    Thanks Phil, is that because they r from the same family……Annie

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #456108
    lynnie_sydney
    Keymaster

    If it were me Annie, I’d only change one thing at a time – so I’d stay on the same dose of zithromax for now when you add in the Doxy.

    Hope you get your symptoms under control soonest – and don’t forget you may experience a herx each time you change up your protocol. It may even be worth considering that the change to zithromax has caused you to herx, if you started that 2/3 weeks ago.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #456110
    PhilC
    Participant

    Hi Annie,

    Thanks Phil, is that because they r from the same family……Annie

    Not really. The main reason for doing a washout when switching from mino to doxy is that the person is experiencing strong “die-off” reactions while on the mino, so a washout period is used to allow things a chance to settle down a little before resuming antibiotic therapy.

    Phil

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

    #456112
    Rockin Annie
    Participant

    Hi Lynnie,

    I did think about the Zith causing a herx, but now u have said the same thing, I am starting to think again, what I am not sure about is that will the Zith do the same as the doxy/mino. Because both the doctor and myself are just feeling our way through this and she is not that up on me taking abx for my RA. Getting Pneumonia and being so sick for weeks really scared me and I think I got the idea of changing my abx from the RB forum, your signature line included and when I looked up Zith on the internet, the tests showed positive results for people with lung diseases.
    I am guessing I should get out my Athritis Breakthrough .

    Thanks Lynnie for the advice……Annie

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #456113
    Rockin Annie
    Participant

    Thanks Phil for that, not sure now what to do, whether I should add Doxy with the Zith or just wait to see if changing has caused a herx, decisions
    Argggggg………….Annie

    BTW Phil r u still up?

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #456115
    PhilC
    Participant

    Hi Annie,

    Doxycycline plus azithromycin is actually a good combination (for example, see: http://www.cpnhelp.org/treatment_protocols), and your current dose of azithromycin is on the low side. The decision is still yours, though; I just thought that the extra info might help you make up your mind.

    Phil

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

    #456117
    lynnie_sydney
    Keymaster

    I am guessing I should get out my Athritis Breakthrough .

    Annie – I don’t think the book is likely to help you with the mix of abx you are now on/considering. I have been on zith (250mg x 3 days pw) for about 18 months – I tested well for it with LW when I was last there – and am likely to be on it until I go and get re-tested. As I said before, I’d factor in possible herxing – but also would only change 1 thing at a time

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #456118
    Linda L
    Participant

    Annie,
    Do you know what triggered your pneumonia? Were you in a cold environment?
    Linda L

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia Very low iron Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Oroxine, Mobic, Panadol Osteo, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #456134
    Rockin Annie
    Participant

    Phil, I have been on that site a few times but had not seen those combos, thank you for that link and after thinking about it most of the night I have decided to use the two, but as lynnie said, slowly does it. I will also take that info to my doctor to try and convince her……Annie

    Lynnie, I will take it slow and won’t change my Zith dosage until my pain settles down, Goodness I haven’t had wrists and foot pain for sooooooo long, now just to convince the doctor! It’s good that u r doing so well on this combo, I can still remember your having a bad time a while back…..Annie

    Linda, I was away with my grand kids who do motor cross and got sick coming home, I was sick for a couple of weeks and then the pneumonia started. The doctor said it was a virus and they didn’t know why the pneumonia started first in one lung then the other, I have broncheictasis anyway so I am careful about getting a chill. Also I cannot have the pneumonia vaccination as I already have had 2, then I developed a pain in the middle of my left chest which was thought to be a heart attack, of course I knew it wasn’t, they still don’t know, but I put it down to RA, but boy did the whole sickness scare me. I am feeling ok now just this pain in my left foot and wrists.
    Thanks for asking…….Annie

    P.s. I will let u guys know how the combo goes

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #456468
    aboyer
    Participant

    Rockin Annie,

    How are you feeling on the zithromax? I just started taking it myself.

    Diagnosed with severe RA 12 years ago
    Tested positive for M. pneumoniae and C. pneumoniae

    Current meds: Kineret 100mg daily, plaquenil 100 mg daily, and just started on minocycline 50 mg m, w, f

    Supplements: fish oil, vitamin b12, folate, b6, iron, NAC, selenium, zinc, vitamin c, and biotin

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