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  • #304418
    tcregon
    Participant

    Hi everyone:

    Have been coming here for awhile but just now had my 2nd appt with the rheumy and got my mino – 100mg.  He told me to take it once a day but I know most people here take it twice a day on MTW – any suggestions or thoughts.  I have RA and so far have only taken OTC IBProfen for a year but it has gotten much worse and many days can hardly walk for move for that matter without being in lots of pain.  I have been doing my homework for the past 6 months.  Wasn't easy to find someone that doesn't agree with the program but willing to try to support me for now.  Anyway, i got my labs back and I struggle to understand it all.  I would love suggestions on anything else I should be taking to help me through this treatment.  Thought I would share labs and open to anyone suggestions/comments and so on.  I tested negative again for Lyme but i also should get the IG test and will check into that too as I always suspected Lyme was a culprit. 

    I'll try to write down what is out of range and sorry I'm so bad
    at these things
    From CBC out of range Absolute Eosinophils 698H
    ANA Screen, IFA it just shows Positive under out of range
    C-Reactive Protein 12H
    Rheumatoid Factor 170H
    Anti-Nuclear AB Titer 1:160
    ANA Pattern Speckled/Homogeneous
    M. Pneumoniae AB (IGG), EIA >5.00

    From the CLR-Comp Metabolic Panel only Creatinine of 1.21 H out of range
    Cyclic Citrulline Peptide (IGG) >250
    It also says a positive result indicates patient has antibody to Mycoplasma
    but doesn't differentiate between active or past active.

    Any thoughts/suggestions/comments are welcome and appreciated. Here is the
    beginning of my journey; I just want to be better again.
    Thanks for all of you here!!

    #349102
    Maz
    Keymaster

    [user=2554]tcregon[/user] wrote:

    I tested negative again for Lyme but i also should get the IG test and will check into that too as I always suspected Lyme was a culprit.

    I'll try to write down what is out of range and sorry I'm so bad
    at these things
    From CBC out of range Absolute Eosinophils 698H
    ANA Screen, IFA it just shows Positive under out of range
    C-Reactive Protein 12H
    Rheumatoid Factor 170H
    Anti-Nuclear AB Titer 1:160
    ANA Pattern Speckled/Homogeneous
    M. Pneumoniae AB (IGG), EIA >5.00

    From the CLR-Comp Metabolic Panel only Creatinine of 1.21 H out of range
    Cyclic Citrulline Peptide (IGG) >250
    It also says a positive result indicates patient has antibody to Mycoplasma
    but doesn't differentiate between active or past active.

    Any thoughts/suggestions/comments are welcome and appreciated.
     

    Hi TCregon,

    Welcome to the RBF forum and apologies for the delayed response! It's summertime and I think many of us are out enjoying the rays – I sure am! 😎 

    Have you had a chance to read the Scammell book – The New Arthritis Breakthrough – and watch the Brown documentary yet? There is info in both on starting doses for rheumatic disease with an inflammatory component. As you have a bit of inflam there, you might want to ask your doc if you can start nice and “low and slow” to ensure you don't get yourself into a massive herxing situation. If you watch the movie to the end, there is info on the basic protocols Brown used. Normally, it would be something like 50mg or 100mg on a Mon, Wed and Fri, or in cases where there was a lot of pre-existing inflam, he might go as low as 25 or 50mg on a Mon and Fri only. It's a lot easier dialing the dose up to tolerance than dialing it down when in the midst of a massiv herx, if that makes sense?

    With an elevated anti-CCP and RF with inflam (CRP) your labs certainly indicate RA.

    If you go to http://www.labtestsonline.org/ you can actually look up each of your labs to read about the significance of each. For instance, your eosinophils are elevated, indicating esoinophilia. Eosinophils are a type of white blood cell and can be elevated in a number of situations…allergies, gluten intolerance, drug reactions, hypoadrenalism, asthma, bacterial infection, inflammation of the skin, lupus, parasites, fungal infections, etc. As you're just about to start minocycline and these labs were drawn ahead of time, it won't be due to minocycline allergy….so that rules that one out.

    http://en.wikipedia.org/wiki/Eosinophilia

    What struck me is that your ANA, although not highly positive, is showing a speckled/homogenous pattern. Although I am only a fellow patient, this indicates to me that there may be a mixed connective tissue thing going on…e.g. RA with Lupus overlap or with some other AI disease. More in-depth testing would need to be run to confirm or rule out other overlapping AI diseases. Lab Tests Online says this about this type of ANA pattern:

    [*]Homogenous (diffuse) – associated with SLE and mixed connective tissue disease [/*]
    [*]Speckled – associated with SLE, Sjogren's syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease [/*]
    [*][/*]
     

    Creatinine is a test to look at kidney function and, when elevated, suggests that something is going on with the kidneys, whether it's infection or something else, like kidney involvement that sometimes goes along with AI diseases, such as lupus or scleroderma.

    http://www.labtestsonline.org/understanding/analytes/creatinine/test.html

    Minocycline is actually renal-protective – a good thing!

    As you suspect Lyme may be a culprit, you're wise to get the IGeneX labs drawn just to get a better peak at what might be going on there….but would definitely push for more in-depth testing to see if some more definitive answers can be found with regard to other possible AI overlaps. Although antibiotic therapy will treat all rheumatic diseases, knowing what you're dealing with from the outset may help to understand your symptoms a bit better and what supportive adjuncts you might need to pursue. For instance, in the case of gluten intolerance (one cause of eosinophilia), a gluten-free diet might be necessary.

    Do you have any noticeable skin involvement, TCregon? Rashes, changes in skin color, texture, etc?

    Glad you found us, but so sorry you had to seek us out. Do hope you find your answers and we'll all be here to support you along your road back!

    If you need a list of AP docs, would be most happy to send one to you for surrounding states (AP docs in short supply in MD), but we do have some Lyme Literate MDs in Maryland, so you're in luck there!

    All the best to you and hope something here might help….of course, please only take what resonates to you as these are just fellow patient suggestions. 😉

    Peace, Maz

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