Home Forums General Discussion stopping traditional treatment to begin anti-biotics

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  • #305109
    jackieg111
    Participant

    Hi, I am a new member to the forum and new to the knowledge of anti-biotic treatment for RA. I was diagnosed with myelitis, RA and scleroderma about 7 months ago and have been on methotrexate, hydrochloroquin and baclofen with little results. I seem to be getting worse. The onset was quick now I am using a walker and battling with muscle spasms day and night. I am wondering if the anti-biotic therapy requires the patient to come off traditional drugs, or are they administered while on them. Thanks for any help on this issue!
    Jackie G

    #354072
    Maz
    Keymaster

    @jackieg111 wrote:

    I am wondering if the anti-biotic therapy requires the patient to come off traditional drugs, or are they administered while on them.

    Hi Jackie,

    Welcome to the RBF forum and so glad you joined us. You’ll find many others here who share your symptoms and with whom you will find much insight and personal experience to share. 🙂

    So sorry to hear the drugs you’ve been prescribed have been of no help. Unfortunately, they are purely palliative and will not stop progression, just mask disease symptoms. Currently, there are no drugs to stop the ravages of SD, just to make one more comfortable.

    Yes, it’s perfectly safe to begin AP while still on standard rheumatologic drugs. If you get a chance to read Dr. T’s article in the last RBF eBulletin, he speaks to this. This is the rheumatologist in Boston who ran the Minocycline in Early Diffuse Scleroderma Trials. In this edition, you’ll also find some promising new research tying oral infections to RA that was presented at the last American College of Rheumatology (ACR) meeting in GA:

    https://www.roadback.org/EmailBlasts/ebulletin_fall10.html

    I think you’ll also find Steve Stephens remission corner story to be quite uplifting, as he initially used some immune-suppressive drugs when he began AP to counter some pretty quickly advancing symptoms.

    https://www.roadback.org/emailblasts/ebulletin_spring10.html

    If you get a chance to read Henry Scammell’s books: Scleroderma – The Proven Therapy That Can Save Your Life and The New Arthritis Breakthrough, you’ll learn about the rationale for using AP (antibiotic protocols) for SD and RA. Dr. Brown, for whom this site was created to preserve his legacy firmly believed in infectious causes for rheumatic illnesses. Usually, by the time patients traveled to see Brown, they were pretty sick and had no place else to turn, because the drugs they were on had created so much toxicity and they were suffering such serious side-effects, they’d lost all hope of recovery. Brown would take patients on an in-patient basis, withdraw these patients from their drugs and begin AP. Of course, being under this amazing physician’s care and watchful eye, it was far easier for him to control withdrawl symptoms and to manage early herxing. Unfortunately, we don’t have this luxury today, so many patients will remain on their usual rheumatologic drugs, but with the goal of eventually weaning from them. This is because, if one adheres to infectious theory, it makes no sense to kill immune function while the body is trying to fight chronic infections. Also, to benefit from the antibacterial properties of the tetracycline class of antibiotics, one needs to have a functioning immune system. This is because tetracyclines are bacteriostatic and do not kill bugs – they just disable them, by interfering with certain enzymatic processes needed by bugs to grow and reproduce. It is the immune system which actually does the killing, once the bugs are disabled and more easily targeted.

    Nevertheless, there are still some fantastic immune-modulating effects that the tetracyclines afford, in addition to their antibacterial properties. If you check out the following link to a past edition of the RBF eBulletin, there is an article in the Articles and Research of Note section that describes these properties:

    https://www.roadback.org/EmailBlasts/ebulletin_fall09.html

    ACR Presenter Reaffirms Safety and Efficacy of Tetracyline Therapy for Rheumatoid Arthritis

    On October 18th, 2009, at the American College of Rheumatology

    #354073
    BG
    Participant

    Hi Jackie,

    Hydroxychloroquine (the generic form of Plaquenil) is an antimalarial agent. It isn’t immune-suppressive. It is effective against the cyst forms of certain bacteria. It raises the intracellular PH to help make the environment less hospitable for the bacteria. It has also been shown to enhance penetration of macrolides such as clarithromycin, azithromycin into cells (Donta, Sam T.) I would definitely stay on the hydroxychloroquine. It takes a while to start working. I didn’t feel much benefit from it until almost exactly 6 months after I started taking it and then the changes were subtle but body wide and definitely encouraging.

    Baclofen isn’t immune-suppressive either. It’s an anti-spasm drug and not a very effective one. I was on it for a while and found it completely worthless. I also experienced some serious side effects from it that stopped immediately once I stopped taking the drug. You might want to consider taking a different drug to manage your spasms.

    Methrotrexate is immune-suppressive but some people stay on a low dose until the antibiotics start to work.

    I hope this helps.

    Barb

    #354074
    SusanSD
    Participant

    Jackie,
    Welcome. I understand the scary progression of SD – mine was rapid in that in less than a year from initial onset of symptoms, my face, chest, everywhere …. skin was tightening rapidly and affecting joints so that I had a difficult time getting up from the floor. My doc thought I was heading toward renal crisis although my internal organs were okay at the time.
    How long have you had SD and RA symptoms?
    I was also on Plaquenil, as well as D-Penicillamine, and predinisone. Maz gave you great info and resources but I will share my approach. I decided to wean off my drugs before or as I started AP because (1) I was experiencing severe stomach pains and cramps and the doc and I were not sure if it was the SD or side effects of the drugs, (2) I am a scientist and reasoned that if I am adding a new drug to the mix, I won’t know the effect of the new drug unless I subtract the other drugs (if you take all present drugs and add a new one, you just know the effect of the sum of them), (3) I believed Dr. Brown’s theory and it didn’t make sense to me to take immune-suppressant drugs when I should be enhancing my immune system.
    I tried to give myself a 2-week washout period (drug-free) before AP but I think prednisone was possibly being weaned off as I started AP. You need a plan to wean off prednisone – don’t quit cold turkey like I did, it could be dangerous.
    Within a few months I could notice subtle improvements so I knew the Minocin was helping (I was truly a skeptic). By 6 months I had even more improvements so that’s when I believed in AP and started adding IV clindamycin. Don’t forget the probiotics and work out a daily schedule of your meds and probiotics so you can maintain your healthy habits.
    Wishing you a swift recovery,

    #354075
    jackieg111
    Participant

    Thank you all so much for your insights and advice! I have just received my copy of The New Arthritis Breakthrough. I will be reading it with much interest. In the little research that I have been able to do over past several days, I’ve noticed that there seems to be another alternative approach to autoimmune disease, which I guess might be called the Candida cure. There is some impressive evidence that it is effective as well, but it runs counter to the anti-biotic approach, considering antibiotics as an enemy of the GI track. Any thoughts on this would be greatly appreciated. Thank you all again!!
    Jackie

    #354076
    BG
    Participant

    Jackie,

    I did a version of the Candida Cure when I first started having bizarre health problems in the early ’80s. It did help a great deal and I have taken probiotics daily ever since, but my health continued to decline. I was diagnosed with autoimmune connective tissue disease in 2008. I was prescribed doxycycline for blepharitis July 2010. Based on my body’s reaction to doxy, my doctors now believe I have had late stage Lyme disease all along, with probable coinfections, and it was the untreated Lyme disease that caused me to develop autoimmune disease as well as all of my other health problems.

    The Candida Cure will do absolutely nothing to address autoimmune problems as serious as yours. It might help strengthen your immune system eventually but if you harbor so many bacteria that your immune system can’t keep up, and the outer proteins on the bacteria mimic your own cells so your immune system is destroying your tissues as well as or instead of the bacteria, then your immune system needs help from antibiotics to manage and or irradicate the bacteria.

    Barb

    #354077
    jackieg111
    Participant

    Barb
    What your are saying makes perfect sense. I am looking forward to learning more on the antibiotics program. I have an appointment on Feb. 8th at Johns Hopkins and it will be interesting to hear what they have to say. I am expecting traditional medical treatment all the way, but maybe I’m wrong. I will keep you posted and thank you again for your insights.
    Jackie

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