Home Forums General Discussion Success!–update

This topic contains 30 replies, has 17 voices, and was last updated by  Eileen 5 years, 6 months ago.

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  • #366542
    jelretiredmama
    Participant

    Congrats Kate on your sucess!

    Am still on my journey. I have SD but am planning on being tested for lyme. In the meantime, trying to find a Lyme Literate doctor here in Canada. I live in Winnipeg, but understand you have a great doctor. Is it possible to get his name?

    Many thanks and God Bless!

    #366541
    Maz
    Keymaster

    @jelretiredmama wrote:

    In the meantime, trying to find a Lyme Literate doctor here in Canada. I live in Winnipeg, but understand you have a great doctor. Is it possible to get his name?

    No worries, Kate. Just saw this and am happy to send contact info to Jelretiredmama in a PM. 🙂

    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.

    #366543
    kater
    Participant

    Thanks Maz
    I will also send her a PM–perhaps you have someone on the list for the Winnipeg area.
    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

    #366544
    Maz
    Keymaster

    @kater wrote:

    I will also send her a PM–perhaps you have someone on the list for the Winnipeg area.

    Hi Kate,

    Unfortunately, only a couple of AP doc options for Alberta, but none listed for Manitoba. Am hoping CanLyme will come up with a few more options for JelRetiredMama….AP docs on the whole don’t do Lyme very well. Am wondering how Manitoba fares in terms of integrative physicians? This may be an option if the doc is open to consulting with another doc. Would certainly save travel.

    One consideration is that Dr. S in Ida Grove is a 9 hour drive due south from Winnipeg in Ida Grove. He may be an option if Jelretiredmama would like to try the 5-day series of IV clindamycin and he is very kind to consult with local doctors on the therapy, if she can find a doc open to helping. Mind you, a drive to Ida Grove may be do-able? Canucks aren’t afraid of a long drive. 😉 Only thing is that Dr. S. isn’t Lyme Literate, if JelRetiredMama finds this in her mix and more complicated abx protocols needed.

    Added note! Upon looking at the map of upper mid-west US, there are a number of LLMDs listed for Minnesota, if travel to the US is possible….and several AP docs.

    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.

    #366545
    jelretiredmama
    Participant

    Thanks — will keep all your suggestions in mind. Will let you know how things roll out!

    #366546
    Anonymous
    Participant

    Hi Kate,
    I would love to learn what you did in more detail. I may have a similar issue with sclero and lyme. I can’t seem to email directly right now, as I need more people to respond to my posts.

    Perhaps, you would be kind enough to reply and we can talk.

    All the best
    Moogle

    #366525
    lynnie_sydney
    Moderator

    Moogle – if you are referring to Private Messaging, you should be able to send and receive now you have posted more then 3 times

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. 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 caps + Progesterone caps

    #366526
    cavalier
    Participant

    Congrats Kate – I hope you continue to do well on the lesser AP, if not you will notice along with your good doc & can adjust if needed. I do believe Lyme is the great imitator & like you I have SD but it is caused by the Lyme.
    So happy for you! 😀

    Jill Lyme & SD, CPn

    #366549
    kater
    Participant

    Thanks everyone. Sad to report that I am not doing well on maintenance. I have only been on it for 3 weeks now. 100mg Minocycline every second day and 250mg of Zith once every two weeks. I was concerned about being on this low a dose. I have an appointment with the doc on Wed. and expect to go on the IV antibiotics. I saw the rheumy last week and he is irritated with me for going off mino and wants me back on it 100mg twice a day. Quite curious as he has been opposed to this therapy all along and didn’t prescribe it. Quite happy to call my Lyme doc names though 🙁
    I can feel tightening in my neck (and itching) and some aching in my finger joints and tightness and collagen in my palms. That didn’t take long! Very clear that the antibiotics were keeping the infection in check. My RF has gone up from 17 to 21 and it has been at 17 for a very long time. Also my liver enzymes were okay, but they have all shown a significant drop in the 3 weeks on the lower dose. I am also on return to work program at the same time which is not ideal and have worked up to four days a week.
    I also got word last week that if I get through the medical screening appointment I should be receiving a cochlear implant within 3 or 4 months. So much going on!
    will keep you updated
    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

    #366547
    Maz
    Keymaster

    @kater wrote:

    I have an appointment with the doc on Wed. and expect to go on the IV antibiotics. I saw the rheumy last week and he is irritated with me for going off mino and wants me back on it 100mg twice a day. Quite curious as he has been opposed to this therapy all along and didn’t prescribe it. Quite happy to call my Lyme doc names though 🙁

    Kate, thanks for coming to update us, though sorry to hear you have taken steps backward by lowering your dose to a maintenance one. It seems very early days yet to be doing this, but perhaps a good test in the longer run to know that you are still a work in progress and mustn’t let down your guard. I have only met one or two SDers who were able to stop their AP altogether and most prefer to remain on their daily mino for life to prevent any relapse. Increasing your doses back to where they were and doing some IVs should get you back in shape.

    Any chance, though, that you could put off your cochlear implant until you are stabilized again? Any surgery is a shock to the system and as you’ve got increasing tightness around your neck, just wonder if the risk/benefit may lean more towards the risky side at this stage? You know yourself best, but just a thought.

    Your rheumy’s reaction was pretty ironic, eh? Didn’t support it, didn’t prescribe it, belittled your Lyme doc and is now irritated that you’ve lowered your dose??? Well, maybe that’s a good sign that he’s “eating his hat” now?

    Try not to worry too much about the tiny increase in RF….RF can elevate when infections are active in healthy folks, too…or just with aging. It’s well-known to be elevated in Lyme, for instance. Here in the US, the ref range is anything below 16 being normal, so you were hovering around the normal range anyway. 😉

    Hang in there…you should be able to get back on track as you’re on to this so quickly. Let us know how you go, Kate….rooting for you! 🙂

    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.

    #366548
    kater
    Participant

    Thank you Dear Maz
    yes I was worried about putting the dose down (antibiotic addiction lol) but wanted to follow what the doc suggested as he has been great. Anyway, it has shown the efficacy of the antibiotics in short order! I am not concerned as I have been off such a short time and know it will turn around just as fast with the orals and/or IV’s. He is suggesting IV 4 days a week for several weeks.
    Pretty funny about the rheumy but all I can hope is that if he meets someone else with SD he will suggest MIno!!
    The cochlear implant, well that is just a gift thing and its now or probably never. I have had decreasing hearing since my 20’s and now really struggle even with the best hearing aids and FM system (read 10,500$) My employer has been giving me a hard time and well, my functioning is just not up to par. Can’t watch a tv show, go to a movie, talk to anyone that is more than arm’s length away, not in the dark, or background noise. My life wasn’t very easy even before the SD. Last week I had a scary deaf accident–couldn’t hear that the door lock didn’t engage and when I came home there was an intruder passed out on my couch!! Only grateful that I found him before I went to bed. I had applied for the cochlear implant twice now but they say I am not quite deaf enough yet. Anyway, they just said they are doing a study for people that are not quite meeting the criteria and I am an ideal candidate. This is only being offered to 75 people in North America. My doc says not if I need one, but when. So waiting and not functioning is hard. I am also thinking of moving to the US ofA to be with my beloved in a year or so, so in my thinking the implant is probably now or never. It should be done in 4 months so I am sure if I tackle the IV and antibiotics aggressively I will have the SD stable before the surgery. Thanks for caring. You are very special indeed
    hugs
    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

    #366550
    kater
    Participant

    Ok, so I am back on the Clarythromycin and Tinidazole, and will soon be starting 4 weeks of Clindy IV’s (4 days a week) –and in BC!
    Wonders never cease! I am sure things will be back on track in short order after this little “experiment” on maintenance.
    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

    #366553
    Woods1977
    Participant

    Thanks for posting your success story… Stories like your encourage the rest of us!!

    #366554
    Eileen
    Participant

    It’s just plain wonderful to wake on a Monday morning and to see your success. I am so pleased for you and just let those good times roll in continued health. You made my day. Keep is updated. We all need to see success as yours.

    Eileen

    #366551
    kater
    Participant

    Thanks everyone for the good wishes! Well I regressed fast and furious on the maintenance meds in just 3 weeks. Now back on orals and improving as fast as I regressed. To me it is prove positive that infection is the cause of my scleroderma! Went for a trial IV (meyers) as the doc was a bit concerned about my veins. Starting next week I am going to be getting Clindy IV’s 4 days a week for 4 to 12 weeks, So excited if that is the right word–been looking for this for a looooong time. Naturopaths in BC have now been approved to do IV antibiotics in addition to prescribing prescription drugs. Finally something progressive! I am full of gratitude to have the good fortune to get this treatment. (Even though it hurts my hands and my pocketbook).
    best wishes to all
    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

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