Home Forums General Discussion To everyone who is new to the Roadback

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  • #307375
    maz.aust
    Participant

    First of all hi to everyone πŸ˜‰

    What can I say, I was diagnosed in Dec 07, started AP in about Apr 2008 and it’s now Mar 2013 – some 5 yrs later.

    In the beginning I knew absolutely nothing about my disease/s and hadn’t even heard of AP. However, I did come across some wonderful people who told me about AP & the Roadback .. at first I didn’t understand anything about AP, but month after month finally, with the help of all the people on this wonderful website, I actually started to get it. I started to understand how AP worked & more importantly the role I could play in my own journey, what I could do to help myself! I will never forget the people here (& yes you know who you are) who held my hand & guided me down this path, you are etched into my memory forever. (as evidenced by the fact that I am once again coming in to see how everyone is and say hi)

    I still remember the intensity of the pain when I flared, unrelenting pain 24/7, up night after night pacing the floor, swallowing pain killers that didn’t work, keeping a diary of what I took at what time so my family could give it to the paramedics if an ambulance needed to be called; then when it passed wondering when it would happen again.

    My disease is PRA, with a little bit of Lyme & fibro thrown in for good measure; it is not bilateral, it travels and occasionally swelling is involved. One minute it was attacking the back of my hand sometimes swollen so badly it looked like it would burst, then 20 min later my hand was perfectly normal & the pain had travelled to attack my thigh or my arm or back or tricep or bicep and so it went on.

    I must admit I hated this rotten disease with every ounce of my being. The unpredictable timing of the flares, the excruciating unrelenting agony.

    The disease decided where to attack, the disease decided how long it would last & the disease decided how frequently the flare would surface. I had no control over it whatsoever.

    Yes, now 5 yrs later I can tell you that around every 10 to 12 mths, I have what I refer to as

    Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
    1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
    1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

    All off days Probiotics

    #367591
    dotsdaughter2
    Participant

    Thank you Maz for always being there for everyone and a special thank you from me. Your letter came at a good time, I going through a major flare up
    Thank you
    Gerry

    #367592
    vinny
    Participant

    Glad to read your summary. Most roads have bumps and we are hitting our share. I continue on just Minocycline and have been off LDN for about a year. I had been pulsing M,W,F but feel I am slipping some. I am mostly free of static pain but am having some problems with rotation of some joints and am in physical thearpy 2 days a week for a month. It has helped my right hip, but my right shoulder is getting worse. Played golf Sunday with the aid of Diclofenac, but paid the price on Monday. I have increased the Minocycline to 100mg daily, but can’t take Diclofenac daily because it drives up my blood pressure. I plan to restart LDN as soon as my order gets here. Interestingly the cyst on my right leg that I suspect to be Pyoderma Gangrenosum has shrunk significantly since I increased the Minocycline. The inflammation is mostly gone.

    Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

    #367590
    maz.aust
    Participant

    Thanks for your kind words …

    Just thought I would let you know that when I flare I first of all look at what I have eaten & think about if I was under any additional stress .. there are foods that trigger flares & for me stress is a big factor. You may not believe these things affect you too much, if at all, but I can tell you if I drink a glass of milk I will flare within 4 hrs & it can last up to 2 days – not a price I want to pay for the pleasure of drinking a glass of milk πŸ˜‰

    Please if you haven’t already done so really watch what you eat & drink it can have a profound affect.

    Cheers
    Maz.Aust
    ps – Vinny when I want to do something physical I take some MSM the day before & day after, & for me it cuts the affect.

    Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
    1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
    1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

    All off days Probiotics

    #367593
    Anonymous
    Participant

    Thank you Maz I am new to boards. Have been very ill with RA sjogrens fibromyalgia. Have found my way to this site. I don’t feel so alone with this disease now. I am so thankful to all of you. Currently I am in 3rd week of AP. Because of all of your encouragement and insights I did not give up when the herx hit me so violently I could only type with my thumb. I will continue even though my doctor does not believe in the Protocol. I am optimistic for the first time in 10 years. Bless you

    #367594
    Maz
    Keymaster

    @Robin wrote:

    Thank you Maz I am new to boards. Have been very ill with RA sjogrens fibromyalgia. Have found my way to this site. I don’t feel so alone with this disease now. I am so thankful to all of you. Currently I am in 3rd week of AP. Because of all of your encouragement and insights I did not give up when the herx hit me so violently I could only type with my thumb. I will continue even though my doctor does not believe in the Protocol. I am optimistic for the first time in 10 years.

    Hi Robin,

    Just popping by to send you a warm welcome to the RBF discussion forum. You were replying on Maz_Aust’s thread, so hope you don’t mind me – the other Maz butting in! As there are two Maz’s here, and it’s such an unusual nickname, it can get confusing for newcomers. πŸ˜† I am in the US and the Maz who began this thread (Hi Maz!!) lives in Australia.

    Robin, just wanted to let you know that you won’t be alone here! This is a really warm, supportive site and you’ll find others, like you, just beginning, some folks well on their way, and some who are already in remission who occasionally pop by to say hello and support others. Usually, though, the folks who are doing well tend to move on back into life and have no need to hang out here anymore – as it should be! πŸ™‚

    If you would like to visit an experienced AP doctor at any stage, please let us know or email apdoctors@roadback.org for a listing for your state/country. Some states or countries have a lack of AP docs and it does require some travel, but many will do this in order to pursue the treatment of their choice.

    Great job moving past the initial herx…I can equate, because I was pretty severe in the beginning, too, with pretty much every joint affected, including my jaw. In my case, Lyme disease was the trigger for my very severe RA that hit so suddenly – almost overnight – that I was knocked for six! My initial herx lasted several months, but I was also on pretty high doses for Lyme and coinfections.

    Keep reading here as often as you can and please join in when you want! There is so much that can be done to alleviate symptoms of flaring and herxing and, while it’s a lot to take in at first, most folks become old pros within a few months and are able to pass on what they’ve learned to others pretty quickly. It really is a pay-it-fwd kind of site. πŸ™‚

    Nice to meet you, Robin, but – as we say around here – just so sorry you had to seek us out.

    #367595
    Anonymous
    Participant

    Hello Maz
    Thank you for the warm welcome…still typing with one finger πŸ˜† I am working on a complete outline of disease and meds for my signature as you do. I was talking to you I have read all your replies. (But also thanks to Maz from Aus.) You are from u.s. I have learned so much from the site and again I am eternally thankful. I look forward to helping others as you have. Blessings. Robin

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