Home Forums General Discussion what’s wrong with me

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  • #463296
    monmar
    Participant

    Hi Jzl,

    I am in the same boat as you! As I sit here writing this post in my bed! I’ve had severe RA for 7 years now, I am 26 years old. I can definitely relate to you as I have also tried all conventional treatments for RA (Methotrexate, Enbrel, Humira, etc). Nothing worked for me and it made me feel even worse. It was a horrible and dark time for me. Luckily through my relentless searching on the internet, I came across Dr.Browns book, read it within 2 days and never looked back. Everyone here at RoadBack has been super supportive. I’ve even made some friends along the way!
    I tried minocycline through my Functional Medical doctor and it took a while for it to work as I’m swollen all over (knees, feet, elbows, wrists, ankles) which is why most of my days are spent in bed/ on the couch. After just two weeks of being on the mino. I felt such a difference. Stiffness was almost gone, energy was up and everyone around me was telling me how much more color my face had. After 4 more months, I started to see that the swelling was starting to fade off certain joints. I was able to get back to my part-time job, drive, etc. Though, for some reason, this healing didn’t last. My 8th month in I had noticed my inflammation markers rising again. I’ve been trying to figure out the reason for that for the last couple of months now. I’m in the process of meeting a new Doctor who is experienced using AP therapy and can do the tests I need to determine what exactly is going on. In the meantime I’m taking penicillin and have seen amazing results in just 2 months as my swelling has decreased significantly in certain joints, confirming these observations through regular blood tests for inflammation markers!
    Don’t give up! There is hope! Keep pushing through, find the right doctor to work with, and get the right tests done 🙂 Sending my best to you!

    Monika

    #463299
    maddie
    Participant

    Thanks Pinkmoth, I didn’t know about the food thing! I’ll try taking it with a ton of water today. Maddie 🙂

    No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
    Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

    #463300
    maddie
    Participant

    JZL – have you tried any diets yet?

    I’m mainly gluten and dairy free and focus on a mainly plant based diet with a bit of fish. I can’t really say it has helped my joints (but then I could be in worse shape otherwise – who knows). I have lost weight though and mentally I feel much clearer.

    Diet works wonders for some people.

    Maddie 🙂

    No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
    Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

    #463302
    Linda L
    Participant

    Monika,
    How much penicillin are you taking and in what form?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #463304
    JZL
    Participant

    Monika,

    Sorry to hear you are in the same boat as me. It’s certainly not a good place to be, especially in a young age like you. You are such a sweet and strong girl. After countless doctors, failed medications and worsen symptoms, I feel I’m approaching the end of my life. Your story and all the wonderful people here surely make me stronger. I am working with my doctor to find the right antibiotic and dose for me. I wish I could start with IV but it’s not an option at this point. I’ll stick with this doc for a while and see. I understand it’s a tough and long journey but hopefully I can see some progress in the coming months like you.

    It’s nice to know people having similar situation. I hope you could make new progress with the new doctor very soon. Please keep us updated. Thanks for your encouraging words! I wish you all the best. We all deserve a better life.

    #463305
    JZL
    Participant

    Maddie,

    Yes I have been trying diet for about a year. No wheat/gluten, dairy, sugar, red meat, processed foods, etc. I can’t say it make a difference but as you said it might be worse without it, who knows.

    The reason I chose to start with a lyme specialist is that I don’t really have a confirmed diagnose of RA or any positive inflammation markers in the blood so I suspect it’s some hidden bacteria or infections in my body. My lyme Western bolt is negative but I have three reactive bands of Igg. My doctor explained it means some type of chronic infection. I have to be patient to wait for the doxy to kick in, or something else.

    Take care.

    #463307
    monmar
    Participant

    Hi Linda,

    I was taking 300mg x4/day. I have stopped for the month to complete blood tests, already my swelling has crawled back in certain joints.

    #463310
    Spiffy1
    Moderator

    JZL, do you have any positive markers for RA like RA Factor or anti ccp?

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #463311
    JZL
    Participant

    spiffy, no, all my blood work are good. I was tested at least every 6 months or every 3 months over the last three years or so.

    #463312
    PhilC
    Participant

    Hi Maddie,

    I’m also seeing a private doctor next week who specialises in Lyme disease/inflammatory arthritis. She offers metronidazole as per the arthritistrust.org protocol.

    I think you should try to persuade that doctor to treat you with the Wheldon or Stratton protocol. Details can be found on this web page:

    http://cpnhelp.org/treatment_protocols

    Those protocols use a combination of antibiotics that includes metronidazole (or tinidazole). The reason is because those protocols should kill a greater variety of microorganisms, including the bacteria that cause Lyme Disease. Because of the antibiotics that they’re using, I like to think of those protocols as a kind of cross between the arthritistrust.org protocol and the approach Dr. Brown used.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #463314
    Linda L
    Participant

    Phil,
    What is Cpn load?
    Thank you. Linda

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #463315
    PhilC
    Participant

    Hi Linda,

    What is Cpn load?

    Cpn load refers to how heavily infected with Cpn (Chlamydia pneumoniae) a person is. The more “bugs” there are, the higher the load.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #463316
    maddie
    Participant

    Thank you Phil

    I will suggest those protocols to her.

    I saw a specialist NHS doctor yesterday (that’s the free health service we get in the UK). They won’t let me see a rheumatologist yet be because my symptoms are mild, and they don’t believe I have RA (all blood tests are normal/negative).

    He thinks I may have reactive arthritis because I had a UTI a few months prior to getting my first joint symptoms.

    That makes me think even more so that I am on the right track.

    Maddie 🙂

    No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
    Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

    #463318
    lemons
    Participant

    The NHS “the free health service we get in the UK” is not free if you pay income tax.

    #463319
    Maz
    Keymaster

    Hi Maddie,

    There is quite a bit of research correlating UTIs with reactive arthritides in the RA Research section of this site (see Proteus mirabilis, C. trachomatis and E. coli to be added). – a new ReA research will be launched in a month or two, too.

    Have you got yourself an AP doc in England yet?

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