Home Forums General Discussion Remission!–Normal labs :-)

This topic contains 12 replies, has 9 voices, and was last updated by  dotsdaughter2 3 years, 11 months ago.

Viewing 13 posts - 1 through 13 (of 13 total)
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  • #308533
    kater
    Participant

    Hi Everyone
    I guess this is official remission. With respect to symptoms I just have mild Raynauds left and a bit of collagen in my palms. My CD 57 is 98, Lymphocytes are normal. So excited I just got my other bloodwork back and my RF is negative and so is my ANA! First time in four years. My 3 year anniversary on AP is Nov 9. I am off all the heavy Lyme antibiotics and IV”s now but remain on 100mg of doxy twice a day, LDN, pregenelone and many many supplements. Every 6 weeks I do IVs of glutathione, Meyer’s cocktails and Turmeric which I find nothing short of amazing for inflammation. I could not be happier. I had rapidly progressing diffuse scleroderma but never tested positive for scl-70 or had organ involvement–I think because I started AP quickly. I wish the same for all of you.
    so grateful for for all you have given me–thank you is not enough. Doing everything I can to help others as you have helped me
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #373709
    lynnie_sydney
    Participant

    Oh Kate – what a wonderful update. You must be over the moon. I just read back over your first posts in 2011. This result is a great testament to your unwavering perseverance and willingness to keep fine-tuning. I wish you many, many years of great good health, you so deserve it. 😀 😀 😀 😀

    p.s. would you mind sharing how you use the turmeric and in what form you buy it?

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #373710
    Maz
    Keymaster

    Your news just keeps getting better and better, Kate! Thank you for sharing it here and wishing you every happiness and continued success in beating SD! 🙂 Keep doing what you’re doing – it’s working!

    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.

    #373707
    kater
    Participant

    Thanks Lynnie and Maz. I am doing great and so comforting to have the labs to back it up now. I do hope to switch back to mino soon instead of doxy and hope I will be able to be at some dose less than 100 mg x 2 day every day. Curious what a maintenance dose is? Mon Wed Fri?? I have an appointment with the doc Nov 12 so will see what he says. I don’t want to cut down too soon since I only went off the zith and tinidazole in August. Lynnie, the turmeric I am doing by IV and it is so awesome I also started taking curcurmin (the active ingredient) orally 1000mg a day. Also trying cinnamon caps for the Raynaud’s and I have been good so far though it has been quite warm in Victoria. Having said that when I first developed Raynaud’s it was in July so that is obviously improved too. Thank you for all you do and for being here for me and everyone always. I will write a testimonial soon.
    cheers
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #373708
    Maz
    Keymaster

    @kater wrote:

    I do hope to switch back to mino soon instead of doxy and hope I will be able to be at some dose less than 100 mg x 2 day every day. Curious what a maintenance dose is? Mon Wed Fri?? I have an appointment with the doc Nov 12 so will see what he says. I don’t want to cut down too soon since I only went off the zith and tinidazole in August.

    Hi kater,

    A “maintenance dose” is going to be unique to everyone and will be whatever dose is needed to maintain remission. This might mean 100mg mino or doxy BID (twice daily) or it might mean 50mg on M-W-F. Thing is, one wouldn’t want to lower the dose straight out of the gate from daily to low pulsed dosing. So, for example, for someone who is on 100mg BID, they’d probably trial dropping back on the dose by just 50mg on alternate days to see how that goes for several months. If there is any return of symptoms, then the maintenance dose would need to go back up to 100mg BID. So, basically, no drastic dose drops and really a “feel as you go” situation. Most SDers really don’t want to risk the chance for relapse so they will remain on their full mino dose for life…and this is very understandable. There is always the option of rotating occasionally with doxy if hyperpigmentation becomes an issue and, if doxy isn’t as helpful as mino in the same dose, the doxy can be titrated to a higher dose, if needed.

    Kater, it will be wonderful to add your testimonial to the website when you’re ready to send it to Road Back. These stories of remission are so important for newcomers who want to know if the treatment is “for real!” 🙂 Also, many SDers are under the impression (incorrect info that is circulating on other sites) that only seronegative cases will respond to AP and so letting everyone know how your labs have reverted to normal is also such a gift.

    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.

    #373706
    kater
    Participant

    thanks so much Maz–yes I am not planning on doing any drastic changing up for the foreseeable future but if I can manage on pulsed dosing of course that would be preferable to give more rest to the gut. Time will tell==it is also a huge complicating factor to have the lyme and myco p in the picture so thank goodness for that special doc. I now have a GP( which I think you call PCP ) and two rheumies willing to prescribe me mino or doxy long term as they are so impressed with my recovery. Got it made in the shade so to speak. Moving to WA next sept so that will be an interesting learning curve. Thankful to be healthy before that big move. Sad day for Canada today. 🙁
    thanks for everything you do
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #373704
    A Friend
    Participant

    EDITED my previous post today. AF

    Kate,
    So happy for you! And also very impressed and interested in the supplements and foods used in your regimen. Fairly recently, I’ve been reading about turmeric and curcumin — and saved a good bit of information into a Word document — and today realized I hadn’t gone back to study it. So, today I printed it.

    I’m pasting below words I used to do a search about Curcumin (excited to say, much more than I expected showed up!!!).

    Suggest you do a “Yahoo Search” for this search to duplicate my own findings, and type these words for your search:
    Curcumin Brain Health influences 700 genes

    Am just now finding time to read indepth on the several links found on the subject of Curcumin and the health issues related to it found in the above SEARCH.

    Take care. And thanks for sharing your progress and your protocols!!! Your post encouraged me to stop then!!! and take a deeper look at Curcumin information — which I’d realized there was a lot more important things about, but time has been short recently. So glad I did.

    AF

    #373705
    Cheryl F
    Keymaster

    Kater:

    Wow, this is such wonderful news! I am so happy for you. I know that you really “owned” your treatment plan and did whatever it takes to get well. Well done!

    Cheryl

    #373701
    marijke
    Participant

    Soo happy for you! And it gives us all hope :).
    I love turmeric too!!

    #373702
    kater
    Participant

    Hi Everyone
    thank you so much for your kind thoughts and encouragment, now and over the past 3 years. You are all amazing! After the curcumin IV therapy I feel like I could run a marathon (probably not lol) and my hands just feel even better than the new normal. I have heard great things from people who are trying it –super for fighting inflammation at all levels. I use the orals on a daily basis now. I know someone who is just starting it for aggressive RA and will let you know what I hear on that.
    cheers!!
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #373703
    jelretiredmama
    Participant

    Hi Kate

    Congratulations as you embrace good health again and congratulations for embarking on this journey. One thing you might want to try for your raynauds is low light laser therapy – http://www.bioflexlaser.com. No down time, not invasive, no side effects and no meds! It really helped to improve my raynauds symptoms, circulation, etc. I did a series of about 12 treatments 2 years ago and found afterwards that I could manage our Canadian winters as I used to be able to. I now only do periodic treatments for my raynauds when I feel it is needed. Visit http://www.bioflexlaser.com for more information and also to find a clinic near you. It may be partially covered under your extended health coverage (under massage modality).

    At our Scleroderma Conference in Winnipeg this year, we had a rep from Meditech Int’l / Bioflex Laser give a presentation. He was a very dynamic speaker. The presentation is on the conference & program pages of our website http://www.sclerodermamanitoba.com.

    I am in my 5th month of AP for lyme / SD now and it is making a big difference. It has been a journey for sure.

    All the best,
    Janet

    #373711
    cavalier
    Participant

    😛 yea!!! Hearty congrats!

    Jill aka cavalier

    #373712
    dotsdaughter2
    Participant

    where in the us can you get turmeric iv

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