Home Forums General Discussion SD minocycline reaction information please

This topic contains 21 replies, has 7 voices, and was last updated by  enzed 5 years, 1 month ago.

Viewing 7 posts - 16 through 22 (of 22 total)
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  • #365523
    lynnie_sydney
    Keymaster

    didn’t take any minocycline yesterday as again I woke up in the night with severe coughing, asthma and sore lungs/ribs. By this morning the ribs are better and the asthma is receding rapidly. I feel a lot better today. The Raynauds finger has suddenly started healing again, and quickly which is great. I’m not taking any minocycline today but will start again tomorrow on a halved dose of 50mg.

    If it were me, I’d have a week’s washout (half life, then half life, then half life etc stays in body for quite some time) and I’d start again at lower dose and perhaps just on 2 days pw and see how you go You can then build (slowly) if all seems okay.

    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

    #365524
    Woods1977
    Participant

    Dear Enzed,

    I began AP in mid-July of this year and experienced the same kind of

    #365525
    enzed
    Participant

    Maz, Lyn, Woods,
    Thanks for all the view points, they do all help me decide what to do next. I have decided to take a week off minocycline, so today is the 3rd day without it. I’ll start again next week on 1st November. I’ll likely start with 50mg a day as I don’t want to go too slowly either. The asthma has stopped and coughing greatly reduced now. If 50mg a day induces the asthma again I will ask the doctor to change the antibiotic to doxycycline but I will need to take along some literature that will help persuade him its a good idea.

    There are obvious improvements that include;
    Dry eyes – previously my eyes were very dry and my tears were toxic and if I cried, they burnt my eyelids so I couldn’t cry at all. Been using eye drops – fake tears – for years. The last week on minocycline my eyes had liquid in them that did not sting at all, so I did not need eye drops. I conclude that the detoxing I have done, has already rid my eyes of some of the toxic liquid which is a great outcome. They sting a bit today but I’ve been 3 days off minocycline and detoxing too so its to be expected.
    Left side of body is now much more flexible – I can bend my left knee and lift that leg level with my hip with knee bent, something I haven’t been able to do for 2o years or more. The knee doesn’t crackle or pop as before. The other side of my body remains the same as before, stiff with a crackling knee. I also have osteoarthritis in my spine and joints which I don’t think I have mentioned before so that might be a complication.
    Raynauds ulcer Healing again but topical antibiotic treatment is helping the healing speed up. I don’t know why the rheumy didn’t prescribe antibiotic ointment for that ulcer before this ????????????? My suspicions are aroused.

    My detox continues to go well. I think the week off minocycline allows me time to detox some more to get ready to go back on it. I am using pawpaw, lemon juice and green tea to combine a colon cleanse as well. So far so good. From everything I have read so far, I can honestly say I know more about this treatment now than my GP so it’s up to me to give him the right literature to keep him cruising along with me on AP. It’s new to him too but I think the improvement in my eyes and also my left leg and knee will persuade him this treatment is correct even if it needs some variation of script. I know he’s intrigued by this illness and treatment and I know he wants to help me. But I need to see him without an inhaler in my hand and wheezing and coughing!!! Don’t want to scare him off helping me. I need him to be confident about AP so he doesn’t refer me back to the rheumy who refused to prescribe AP when I asked him to.

    The nearest doctors to me who are familiar with this treatment are in Brisbane, nearly 2000 kms away from where I live – its not acceptable that I have to travel that kind of distance just to have access to AP and I have no intention of doing that. So, I need to take this journey with my GP on board. This has been a lonely illness for the past 30 years and I have become very reliant on my own judgement. I don’t panic. I only got the SD diagnoses 3 years ago so I was a long time on my own before that. I excluded dairy and wheat allergy, candida and gluten, and amalgam dental fillings as explanations many years ago and I’m convinced this is bacteria with a possible complication of ‘tick’ infection i.e. Lyme. But one thing at a time. I am going forward on AP with confidence, based on the improvements so far.

    #365526
    SusanSD
    Participant

    Enzed,
    Only you and your Dr. can know what your body can handle in terms of finding the just right dosage but I agree with others who state a smaller continued dose would be preferable to stopping for weeks/days. My own personal belief is that Dr. Brown is right and these diseases are caused by mycoplasma bacteria or other similar bacteria. When we stop antibiotics, the bacteria develop resistance and biofilms making it more difficult later to fight them.
    Here is a document that does mention use of antibiotics and although it is referring to the gastric system it is specific to systemic sclerosis. And it does say that for some patients they need to continue on antibiotics for continued improvement.
    http://www.clinexprheumatol.org/article.asp?a=932
    Best,
    Susan

    #365527
    enzed
    Participant

    @susan(SD) wrote:

    Enzed,
    Only you and your Dr. can know what your body can handle in terms of finding the just right dosage but I agree with others who state a smaller continued dose would be preferable to stopping for weeks/days. My own personal belief is that Dr. Brown is right and these diseases are caused by mycoplasma bacteria or other similar bacteria. When we stop antibiotics, the bacteria develop resistance and biofilms making it more difficult later to fight them.
    Here is a document that does mention use of antibiotics and although it is referring to the gastric system it is specific to systemic sclerosis. And it does say that for some patients they need to continue on antibiotics for continued improvement.
    http://www.clinexprheumatol.org/article.asp?a=932
    Best,
    Susan

    Thanks Susan, I’ll read that article.

    #365528
    lynnie_sydney
    Keymaster

    The nearest doctors to me who are familiar with this treatment are in Brisbane, nearly 2000 kms away from where I live – its not acceptable that I have to travel that kind of distance just to have access to AP and I have no intention of doing that.

    enzed – that is because AP is outside the mainstream of treatment options for rheumatoid diseases. It is always hard to find someone with whom to work (anywhere in the world) and, often, travel is necessary. Having said that, your GP is a good option – at least to begin with. That is how I started and I had my GP rx mino for the first 4-5 years, with me case managing myself (with his agreement, as mino is such a relatively benign drug). For the next stage of my own road back, I decided to bite the bullet and travel to Victoria to see an experienced AP doc.

    In your case, you may even be able to get a rheumatologist on board, should you elect to. As there is no recognised treatment protocol for SD, they can tend to be a little more open to alternatives (you could print off some material from the main site for him/her to read re mino and SD). Here’s a link to relevant studies:

    http://www.roadback.org/index.cfm/fuseaction/studies.sub/subgroup_id/16.html

    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

    #365529
    enzed
    Participant

    Thanks for all the help I got here. I’m restarting AP today, 50mg daily so I’m halving the dose to start with and see how it goes. I’ll go back to my personal thread to post outcomes.

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