Home Forums General Discussion Great news! Update, 9 months in…

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This topic contains 22 replies, has 8 voices, and was last updated by  lynnie_sydney 1 year, 6 months ago.

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  • #455457
    Airen
    Participant

    Good Morning All,

    Without typing up my entire story I wanted to give you all a quick update, 9 months into AP treatment for my RA. I was diagnosed in October 2014 with RA but pains started in February 2014. I started the antibiotic therapy in July 2015, 100 mg MWF. After 4 months and in the middle of a terrible herx I decided to increase to 100 mg daily. I immediately turned the corner and felt amazing! Then right on schedule, three weeks in, I herxed again but not as bad and not as long. I have since increased again to 100 mg twice daily. In this time since starting mino I have also decreased my pred from 15 mg in July 2015 to presently 5 mg daily. I will continue to decrease 1 mg monthly to get off those last 5 mg. I am feeling great. Pain level is maybe a 2-3 AT MY WORST in the mornings and then quickly goes down to a 1 for the day. I am not in any pain pretty much…i can just FEEL the RA still there. My swollen left knee, my locked elbow, my swollen knuckle…my problem areas. I am still a little slow getting up out of a chair or couch…just to be careful but no pain…I am walking fast again all over the office and at home. Still take it slow up and down the stairs but I can actually climb the stairs like you are supposed to and I don’t have to come down one by one like a little old lady anymore. That was a big change for me…coming down the stairs in the morning hobbling in pain clutching the railing for dear life, now I can descend pretty normally. I can open and close my hand upon waking…I used to not be able to close my hand until 5 or 6 pm at night daily! I still have shoulders that pop and knees that creak but no pain. I have nuisance pain but completely tolerable…I can live my life completely normally again! I do still have some improving to do, I’m not in remission yet BUT I AM SO MUCH BETTER.

    BUT I also have the NUMBERS TO PROVE IT!!! My RF was 72 upon diagnosis in Oct 2015 and the next 15 months was a living hell. After being on AP for 6 months we did the RF test again and it was 89 in January 2016. I wasn’t disappointed because I was feeling great and knew my numbers could fluctuate before remission. NOW 4 months later we took my RF again, just had my follow up yesterday and MY RF IS 39!!!!!! I am so very excited that I now know this treatment is really truly working. Me feeling better isn’t just a FLUKE…my RF numbers are going down!!! I hope and pray I am on my way to remission soon. Maybe another 6-12 months???

    Thank you to everyone here who has helped and responded. This is truly an amazing forum. We are all so lucky!

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #455458
    Spiffy
    Participant

    You go, Girl! I loooooooooved reading this. You are on that yellow brick road! Yippy! Please please keep us informed! So happy your r f is down. There is nothing like the rush you get when you see it going down! I will have mine tested in a couple of weeks. I hope to have good news, too! Keep up the great work!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #455459
    Spiffy
    Participant

    What minocyclene brand do you use?

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #455460
    Airen
    Participant

    I am on Watson/Actavis generic. I was having no issue getting it from my Target all this time but now they are on “backorder.” I switched my script to a Walgreens that still had some Watson on the shelf but also showed “backorder” for when they run out. I hope to be able to stay with Watson…I am def nervous about having to switch brands.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #455461
    Spiffy
    Participant

    I am on Ranbaxy. Congrats again!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #455471
    Spiffy
    Participant

    It fell 50 points in 4 months? That is fabulous. So happy for you. Mine was 28 in January 2016. I so want to get good news. Keep doing what you are doing. Did they do a CBC or did you have any other labs that had also improved?

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #455473
    Airen
    Participant

    She did a CBC in January and it was all good. ANA as well and showed no other signs of AI diseases. I know my sed rate is good and CRP. They are way down from where they were 2014/2015.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #455574
    Airen
    Participant

    I’m bumping this up to make sure everyone saw this. Not much going on in the forum lately so I wanted to let you all know how well I am doing! I know it is a struggle to unearth all the possible things that have gone awry in our bodies. I have (so far) been one of the lucky ones with the AP treatment. I do not take for granted what some of you others are going through, whose journey has not been so easy. My heart goes out to you and I think of you daily. The beginning of my journey was hell but I think I am on the up swing. Fingers crossed.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #455575
    rushnik
    Participant

    Wow great news Airen… I am thinking of increasing my dose as have been on MWF but hit a plateau and got pains back again… When you increased did you feel any initial side effects? How long was it before you felt the improvement?

    I hope you continue on the great trajectory you are on! Well done you.

    N.

    #455577
    Airen
    Participant

    My first increase from 100 mg MWF to 100 mg daily (4 months in) I immediately felt great for exactly 3 weeks then I herxed. This second herx was not nearly as miserable or nearly as long. It lasted maybe 4-6 weeks?? Then I felt great again. I increased again (another 4 months later) to 100 mg twice daily and felt great again and right on schedule, just like before, I herxed at 3 weeks. But this time was even less pain and lasted for even less time, maybe 1-2 weeks? I’ve been feeling pretty great! I’m hoping and praying I’m on my way to remission. When I was in my initial herx after starting AP (and in pure hell) I reached out to dr S in Iowa. That sweet man replied to my email and rec i slowly increase until I get to 100 mg twice daily. So glad I did! I would def recommend trying an increase. It can’t hurt anything and you might be pleasantly surprised! And don’t fret if you herx! Good luck to you and sincere hopes you feel great soon!!

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #455724
    rushnik
    Participant

    Hi Airen,

    Thanks for replying! I started taking 200mg per day around three weeks ago… I initially felt ok but then after around a week felt worse again… How do you tell that it is a herx and that it’s a good thing and not just that the RA activity is getting worse? How did your herx manifest itself? Was it that your normally painful areas felt worse? My painful areas lately have been my wrists and the last week, they feel soooo much worse – I don’t know how to tell if it’s that the increased dose is working or not…

    Hoping to turn the corner soon like you did!

    #455729
    Maz
    Keymaster

    Hi Rushnik,

    Certainly sounds like the timeframe for a herx. It’s a sign the abx is reaching its intended target. Did you increase your dose all at once or in slow increments?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #455730
    rushnik
    Participant

    Hi Maz,

    I did go up to 100mg MTWTF for a while but I probably didn’t leave it long enough before going up to 200mg each day…Strange thing is my lower body last few months has felt loads better – I would say normal, even on waking in the morning. It seems that last few months it’s all been concentrated in my shoulders and wrists and last few days my neck has also been painful. My energy levels feel low too which is making me feel low… Not much enthusiasm for much!

    #455734
    Airen
    Participant

    Honestly I never REALLY knew it was a herx until now that I have hindsight. You know when you’re “in it” all you can think is “here it comes again, I’m not getting better.” I thought that too. I did. BUT it did get better. I look back now and can see that it was definitely a herx because they came on at the same time each time I increased (3 weeks) and each time lasted a shorter time span. When I first started AP I started at 100 mg once per day on MWF. I did that for 4 months and that first 4 months were my absolute worst. I thought I am not getting better, I feel awful, I was depressed and crying all the time. So in the middle of my first herx I reached out to DR. S in Iowa and he actually replied! He urged me to slowly increase to 100 mg twice daily. I decided what the hell! I increased and immediately felt great! I went to 100 mg daily for 4 months and I did herx right at 3 weeks in but it last about 4 weeks instead of 3 months like when I first started this treatment. I increased to 100 mg twice daily at another 4 months and again felt great but herxed right at 3 weeks but for only 2 weeks this time. I have also been decreasing my pred all this time too. I recently decreased from 5 mg to 4 mg and I only felt a little rebound pain for 2-3 days maybe. I really am doing so much better and am so thankful for this website and the people and that I decided to increase my dose. Please stick with it and tough it out…you will most likely get better. Oh yeah, I also take 4 advil in the morning to help with pain before I take my pred dose.

    6 am: synthroid for low thyroid (shocker)
    7 am: 4 advil
    9 am: 100 mg mino
    11 am: 4 mg pred
    6 pm: Magnesium, B Complex #6 for MTHFR, 4 Fiber Smart probiotics
    9 pm: 100 mg mino

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #455755
    rushnik
    Participant

    Thanks for the reply Airen – what did your Herx feel like? Did you have any dizziness/nausea feelings or was it just worsening of the symptoms you already had? I recently increased to 200mg per day and was ok for a couple of weeks but then I started to feel really dizzy/nauseous and not good at all – headache that felt like a migrane, pain behind my eyes. I am thnking that it must be related to the increased dose of Mino so I am going to give it a couple of days with no dose and then start getting used to 100mg a day again…

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