Home Forums General Discussion Doxy for SD-like symptoms? and other questions…

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  • #465638
    AtownAlex
    Participant

    Good day,
    I am a young male with SD-like symptoms (mostly Raynauds and joint pain currently, some GI problems). I was curious how many here started or have switched to doxycycline for SD. I trust my AP doctor–she is very thorough and you can she tell thinks outside the box, really treating me holistically through making sure my diet/gut is addressed appropriately as well. But it seems mostly everyone I’ve read about swears by minocycline (specifically Minocin)? Do you recommend I press more to take that instead? I also had a couple other questions… From what I’ve come to understand, most people get more of an allergic reaction type Herx; is it common to feel your original symptoms getting worse? I was actually managing my joint pain pretty well from being on Plaquenil, but I feel like I’ve taken a step or two back from the progress since starting on the antibiotic. It has made me start to wonder about the gut microbiome and if since taking the antibiotic I have really thrown my body into more unbalance. Does anyone recommend a good probiotic? I’ve been taking a Metagenics probiotic once or twice daily but I’m not sure how effective it really is. Lastly, since navigating this undiagnosed phase, I have become quite interested in capillaroscopy. Has anyone here examined nailfold capillaries before and after embarking on AP? I’d be curious to see the results. I feel like mine are abnormal, but my one rheumatologist has never been convinced by it. I would be curious if could help delineate the pure SD/SD & Lyme/pure Lyme camps. Appreciate any answers you have! Thanks.

    #465640
    Lynne G.SD
    Participant

    Hi Alex;
    I have been around the block several times.20 years on AP have taught me a lot.Mino is far better than Doxy.I was on Mino for around 15 years and was in full remission for at least 14.Only then did I move to Doxy as I felt safe to do so.A full year on it at 200mg a day with no relapse led me to lowering the dose to once a day and eventually to once every 2 or 3 days.
    Once I ran out and my doctor was on vacation for 6 weeks.Within a week the SD was coming back and the vasculitis that is usually part of SD as it is a vascular disease landed me in the ER.It only took a couple weeks back on Mino and2 weeks of Prednisone to get back to where I was.My doctors told me to never get into that situation again because the only thing to do was IVIG for the rest of my life.I was very lucky that it worked.

    #465641
    Lynne G.SD
    Participant

    OOPS,forgot to mention that i do/did (who knows) have Lyme.Took at least 15 years before anyone figured it out.Good site to read is Global Lyme Alliance

    #465642
    Maz
    Keymaster

    Hi Alex,

    A dermatologist might be better able to do a nail-fold capillary test for you, but it’s likely something to check prior to an appt. It is a test that has helped some to confirm diagnosis. I don’t think it will help delineate whether or not you have Lyme disease, however. Experienced LLMDs are skilled at taking in the whole picture of a patient with specific tickborne testing, supporting labs, clinical signs/symptoms, past exposures, living in or visiting endemic areas, etc.

    Degree of herxing tends to generally be relative to the amount of pre-existing inflammation. Many SD patients don’t exhibit inflammation by the usual blood markers and mostly don’t herx. However, where diagnosis is unclear, such as in cases of mixed or undifferentiated connective tissue disease, where there are inflammatory rheumatic overlaps, herxing is more common. LLMDs want to see a good herx as it tells them the antibiotic is reaching its target! Those who don’t experience a herx worry the antibiotic isn’t working!

    There are numerous ways to speed the exit of endo-toxins released by dying bugs, including antioxidative therapies, FIR saunas, gut cleanses, diet, etc. Finding what helps most can take time. I have found that intermittent IV Myers Cocktails and glutathione IV pushes help enormously, but I also use various supps, like liposomal vitamin C, NAC, milk thistle, Transfer Factor, and resveratrol. Integrative doctors are usually well-equipped to help advise with this sort of thing, because individual patients may need individual approaches to support therapies.

    My doctor prescribes Theralac (1 cap a day) and Tru-bifido Plus (1 cap a day for 4 days a week). It can take time to find a probiotic that suits the individual, tho. A longtime APer who used mino for 20 years and who was in remission for 15 years, took 100mg mino twice daily and PB8 vegetarian probiotics (8-10 caps a day) successfully during that time.

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