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  • #461346
    richie
    Participant

    As a matter of fact the MIRA study called for 100 mg 2x daily –the doctor is working you up to that –The MWF dose evolved as time went on and is not the MIRA dose
    —Sounds like your doctor is really on the ball –Be patient !!!!!

    #461306
    richie
    Participant

    Firstly -ask your doctor for a nail fold capillary test –its simple and a good marker for SD –SD is certainly treatable successfully with the use of minocycline —You should also be taking meds for the GERD as well as Raynauds –I dont know where some ideas pop up -scleroderma in most cases does not leave permanent damge and I dont know about this wrinkle business —Skin involvement in scleroderma means the skin tightens due to excessive collagen under the skin –when this collagen is dissolved due to the use of minocycline -there are no lasting effects– nor wrinkling —IN twenty years and talking to lots of folks I havent heard anything about wrinkles due to scleroderma after it goes into remission –A person gets wrinkles from AGE —-In 1999 I came down with a bad case of diffuse scleroderma -I laid out a plan –find the best doctor I could –hes now retired -I went up to Harvard to see him for 5 years or so -got much better then my local internist kept up my treatment —-its now almost 20 years -complete remission–my hands at the time were contracted due to tight skin –they are now perfect –no wrinkles –my face has wrinkles cause I am getting old —Set out a plan -get to an experienced doctor -have your local internist treat the little nasty symptoms such as GERD and cold hands {Raynauds } my internist treated this very successfully and they havent bothered me since .
    believe me you can have more lasting effect from RA than from scleroderma –I have no lasting effect at all –Good luck and know you will win !!!!!!!!!!!!!!!

    #461290
    richie
    Participant

    Minocin brand hasnt been produced by Valeant in quite awhile –after 18 years I switched to a generic and no problems at all

    #461285
    richie
    Participant

    To me really sounds like a severe allergic reaction to colostrum

    #461280
    richie
    Participant

    Drugs.com lists Bactrim and minocycline taken together as possible having interactions –unfortunately many many doctors have scant knowledge of which antibiotics can mix together and which cant –This is where your pharmacist comes in –he or she has far better knowledge of this than most doctors … I would definitely stop both meds until you talk to doctor–

    #461268
    richie
    Participant

    Has anyone suggested a so-called scleroderma infusion needle –these are extra thin and quite helpful -Ports can get infected —to clear up some medical gobbleyduk –Crest is scleroderma —Crest is just an acronym for a series of symptoms -I didnt understand this dominant phrase that your doctor must have used –

    #461244
    richie
    Participant

    Hi Maz –Firstly thanks for all the good work you do here —hope everyone realizes the significance of it !!!! -Now This Dr Lee is an anti-establishment person who has sued entities in the past —It would seem to me that there is a credibility issue with him —-I would think if he has a significant contribution to the lyme issue -certainly a major company would collaborate –The profit motive over rides every thing !!!Any way –keep up all the important work you do and all the best –Richie

    #461227
    richie
    Participant

    Hi I hope you are taking med to control your blood pressure as well as palpitations –someone in my family takes SECTRAL for BP as well as extra beet –you have to tend to these issues —Taking a TNF is not a terrible thing -I know mant folks with rheumatic conditions who have gbeen helped by them —Face it –you have been limping along for over a year now taking all kninds of antibotics without result –I would think you would be a good candidate for TNF meds —good luck -richie
    TB

    #461203
    richie
    Participant

    Just a quick reminder —not only is probiotic very important –ENOUGH probiotic is extremely important —-A person on antibiotic therapy needs a much higher dose than the label —For example I take 7-8 capsules daily of probiotic –when I have a different ailment that requires a compatible antibiotic along with minocycline -I up it to 10 capsules daily –I take them all at once in afternoon –never an issue –this has been my routine for 18 years now !!!!And its always been PB8 brand —

    #461187
    richie
    Participant

    Agreed -people get better using antibiotic –myself included but I stress it is not a cure –merely remission -over the 18 years or so I have been around here so many people relapse if antibiotic stopped completely –while I am in remission I continue the antibiotic because relapse is a definite possibility –no less a pioneer than my doctor at the time Dr Trentham of Harvard felt stopping the minocin completely made relapse a strong possibility –this is remission –no cures !!!!

    #461184
    richie
    Participant

    What makes you think a headache is related to arthritis –antibiotic is not a miracle nor is it a cure-all for headaches etc —Antibiotic therapy is not a cure rather the goal is remission and could well be a suppressor –If you are looking for cures -you are looking in the wrong place !!!!

    #461177
    richie
    Participant

    Lack of water in stool

    #461123
    richie
    Participant

    I take 200 mg of minocycline daily for the past 18 years –I am in complete remission but do not want to chance relapse –Zero side effects except for darkening of skin –zero effect on appetite -I eat anything that agrees with me –I should add I still take an anti reflux med which was one of the symptoms of scleroderma —the key is take plenty of probiotic -I take 7 capsules daily of PB8 -all at once in afternoon –no pro0blems no side effects at all !!!!!!!!!!!!!!!!!!!!!

    #461105
    richie
    Participant

    If your lungs are so damaged that there is talk of transplant -this is a sure sign of long term scleroderma that has not been effectively treated —while antibiotic therapy should be tried -very frankly it is a long shot that it can be effective –its kind of late for antibiotic IMO –Unfortunately you should have found this site 10 years ago !!There most likely is much more damage besides fibrosis —

    #461092
    richie
    Participant

    KAT –Did I read you take 100 mg 4 times daily ???? -Is that correct ???If so -that most likely is the reason for elevated liver enzymes –

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