Home Forums General Discussion Testing For Mycoplasma

This topic contains 4 replies, has 3 voices, and was last updated by  eagle26 9 months, 2 weeks ago.

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  • #458003
    LifeAboutChange
    Participant

    Hi All,

    The forum has been quite helpful, especially from the more senior and active members such as Mez and others. It can be quite a frustrating and even lonely thing to have when others don’t understand and it hard to prove you have anything – and you just complain too much! I was mostly doing ok for the past 5months but had a flare up about one month ago that was caused from stress at work. I have been on Minocin now for 4.5months also, I was taking 200mg daily but since a week ago have begun the AP of M/W/F at 200mg daily. I am now actively looking hard into many cures to fully get rid of it once and for all. The recent flare up had left me with more fatigue than before also wrist and shoulder pain that gives me trouble to pick up my son. Maybe it is a good thing, maybe it is the “herxing effect” but so far this has lasted just over a month and not getting better. I begun taking ibiprophen again 2-3 times a day 2 capsules a day just so I could walk properly and move my shoulder and wrists, I have not taken in NSAIDS for nearly 12months so it feels of course things are getting worse and not better!

    I did a test with the Doctor about 5months ago for Mycoplasma but the test came back inconclusive. It was a blood test only. I would like you guys help in sending me some quality links that I can send to my Doctor to ensure I get the right test done this time. I have read some articles that seamen test is needed or even joint fluid as it hides in these but not in the blood so easily dedicated?? I believe also there maybe a slightly different test for men to women. I am a man but I am thinking to get my partner tested as well to ensure she doesn’t have anything. She has no symptoms, but possibly is carrying it and thus (small chance) if she were or I were – for the past 21months I have been reinfecting myself… I am HLB A27 positive so my genetic make is prone to be autoimmune disorder where as “normal” people may not for the same bacteria/mycoplasma. So one theory I have recently had is possibly my partner has it carrying in her, she shows no symptoms but I do due to my HLB A27 positive gene and thus I keep getting reinfected. I have tested for Chlamydia twice and both times negative so I figured I was not infectious, I have read up on Mycoplasma more and some say it is and some say it is not – depending on the type you have. Anyway I wish to get the test done so I know for sure I have it and also what type and then can look at the http://cpnhelp.org/treatment_protocols which was recommend by people in the forum as more practical and straightforward approach. If of course my partner has it has well, even though she shows no symptoms at all, we will need to be treated together to ensure no reinfection and one best recommended for women.

    Thanks in advance.

    L

    Reactive Arthritis, since June 2015.
    Current Meds: Been on Minocin 200mg daily since November 2016, now on M/W/F 200mg AP.

    Supplements Daily: 2 caps Krill Oil, 20mg Astaxanthin, 10IU Vitamin D3, 1g NAC, 24mg of boron a day.

    Alternative: Periodic use of home made collodial silver 150ml daily. TCM herbs to target infection, heat and inflammation. Acupuncture to relieve pressure and release heat. 2tbs of organic coconut oil. Oral form of essential oils frankincense and oregano. Topical form of e

    #458004
    Maz
    Keymaster

    Hi L,

    Under the Resources tab at the top of this page, click “Useful Contacts” to find a listing of labs that do specialized myco and other testing. I’d suggest emailing Dr. Kilani to ask which tests he’d recommend for you. They test for all sorts of mycobacterium and mycoplasma strains and he could tell you if they can also test joint fluid.

    Contact Info/Inquiries

    The other two labs likely also have contact emails, so you might get a number of different replies if you try to contact all three.

    Might be helpful to know that because AP is not immune suppressive that flares can and will occur all the way to remission, but these should become less severe, less frequent and shorter in duration over time. So many things can trigger a flare, not least of which us stress, as you mention. I do, however, think you are wise to look more deeply into this at the 6-8 month mark as you have had such a good response to date.

    See FAQ# 28: http://www.roadback.org/faqs/?faq-category=35

    You mentioned lowering your dose, but has your doc suggested trying a washout? If symptoms improve during a short break from mino, it can be suggestive of a few things.

    L., any chance you could add a signature line with deets of your diagnosis, meds and supps, etc? Thx!

    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.

    #458005
    LifeAboutChange
    Participant

    Hi Maz – much appreciate your long and detailed response. Unfortunately I do not live in the US, as do a number of other people on the forum so cannot easily get the test done there. I wish to know the exact way to do this so I can simply copy/paste and send to my Doctor so he can do in the country I live. Also, if it is Mycoplasma, which I highly suspect it to be, can it be transmitted from one person to another even though the other person doesn’t show symptoms?

    I looked on the settings to my profile but could not see where to create a signature on the backend, please let me know and I will do it immediately.

    Thanks again Mez.

    LAC

    Reactive Arthritis, since June 2015.
    Current Meds: Been on Minocin 200mg daily since November 2016, now on M/W/F 200mg AP.

    Supplements Daily: 2 caps Krill Oil, 20mg Astaxanthin, 10IU Vitamin D3, 1g NAC, 24mg of boron a day.

    Alternative: Periodic use of home made collodial silver 150ml daily. TCM herbs to target infection, heat and inflammation. Acupuncture to relieve pressure and release heat. 2tbs of organic coconut oil. Oral form of essential oils frankincense and oregano. Topical form of e

    #458006
    Maz
    Keymaster

    Hi L.,

    If you click on this link, you’ll find instructions on how to set up a sig line:

    Your User Profile, Password, Avatar, Signature and Message Settings

    Any trouble, let us know.

    Sorry, I forgot you’re not in US. Somewhere in Europe? If so, you might be able to use one of the euro labs? In any case, the list of infection types on the lab sites might help and you could still email the lab to ask what testing they’d recommend. Perhaps you can then find a lab where you are to run it for you or ask the lab if they can accept international samples. Some labs will even mail testing kits for the purpose, like IGenex Lyme lab. Worth trying, I think.

    Re: mycoplasma transmission…yes, mycos are everywhere…in the air, soil, food…and passed from one person to another. E.g. M. Pneumoniae. Thing is, as you rightly said, not everyone will develop a rheumatic or other chronic disease. Dr. Brown’s theory was that some people develop bacterial allergy or hypersensitiviy to the bug endotoxins. I think of it being a bit like two people in a barn, exposed to hay, where one person has hay fever, allergic to the hay dust, and the other is just fine. It’s a bit simplistic, but you get the picture, I’m sure.

    Most people don’t bother with myco testing unless they want to prove infection to get IVs covered by insurance. Where testing might be more helpful is if another type of bug is implicated, like chalmydia, klebsiella, yersinia, proteus mirabilis, H.Pylori, a protozoan, like toxoplasmosis, for instance, strep or Lyme, in case different classes of abx need to be added and combined. Mycos respond very well to low Pulsed doses of tetracyclines, but other types of bugs might be cell-walled or pleomorphic and require a different abx approach. Also, in ReA, it’s not a bad idea to have a comprehensive stool analysis run.

    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.

    #458042
    eagle26
    Participant

    I also wonder if there are labs doing detailed semen analysis for bacteria in Europe. If you find L can you inform me too.
    Thanks Cheers

    Reactive Arthritis+ tachycardia+ prostatitis 2015 till now. Just a short remission 4 months.
    Azithro 250 mg *3 weekly , NAC, aspirin with vit C, krill oil, beta blocker, SSRI, turmeric

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