Home Forums General Discussion How do you know if it's working?

This topic contains 9 replies, has 4 voices, and was last updated by  Maz 9 months, 1 week ago.

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  • #459804
    Kat0605
    Participant

    I’m very early in scleroderma diagnosis-my main issue is tingling and skin changes (loss of elasticity, soft tissue wasting, indents all over my body). I started on ABX 11 weeks ago and I can’t decide if they are working or not.

    My symptoms have always come and gone and roved all over my body. I’m still having a lot of tingling, but the swelling is not as bad (could be weather cooling down?). I’ve also been off work for 5 weeks on modified bedrest-so a reduction in stress could be helping.

    Last night, I was able slough off a ton of dead skin-which I’m hoping was the excess collagen coming out. Meanwhile, my mouth has shrunk and my skin has doughier/stickier since starting ABX.

    It’s just so hard to figure if I’m going forward or backward.

    I’m due to deliver next week and am trying to decide if I should stay the course with Zith/Ceftin or seek out true AP protocol with doxycycline or minocycline, which I feel like are more effective for widespread skin issues, which are my biggest concerns.

    Thoughts?

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #459806
    Maz
    Keymaster

    Kat, it’s still really early days and it’s during the early months when worsening is expected. As you’re close to your due date for the baby, it’s a good idea to start thinking about whether you want to breastfeed or not. If not, starting minocycline right after birth makes sense, whatever else is added to your Lyme protocol. Some LLMDs claim spirochetes can be passed in breast milk to the baby, so if unsure what you do, its best to talk with your doc. If you do decide to breastfeed, then you would have to wait to start minocycline, as it could be passed through breastmilk and harm the infant’s growing bones/teeth.

    Wishing you every happiness for your delivery day!

    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.

    #459807
    richie
    Participant

    Eleven weeks is way too early to make any determination –collagen doesnt come out –you do not see the collagen dissolve or wherever it goes —Sloughing of skin is not related to collagen –Progress is measured in very very small steps such as swellings reducing -a good indicator for you could well be your mouth –if it starts loosening thats a good sign of progress —-meanwhile you can help it along by doing mild stretching excercises with your mouth —if you are interested -I would lay out the excercises I did years ago for mouth —

    #459949
    Kat0605
    Participant

    Thanks Maz and Richie. My daughter was born last Monday. Perfect little girl- 7lbs even 20.5 oz. I ended up with a csection and I’m recovering nicely.

    I’m not able to breastfeed and am ready to fight this disease like hell to be around for my little girl. I sent an email to my LLMD asking to be started on doxycycline. Should I also be consulting with an AP dr?

    My Raynauds hasn’t come back yet, but I definitely had skin tightening in feet and calves and continual tightening and in my mouth.

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #459950
    Lynne G.SD
    Participant

    Hi Kat;
    Congratulations! Yea!!what is her name? Yes,I am a nosy grandmother,only 3 of mine but borrows others.
    Over 18 years I have seen people come and go and paid attention to all their meds.If you are not breast feeding her why don’t you use something that really works and relatively fast.SD is something you have to nip in the bud as fast as possible.Doxy may work but it usually takes much longer to take effect.Get the SD under control and later you can move to doxy when you have no more symptoms.My lyme protocol used mino 200 mg plus many other antibiotics.Today I only need 100mg every other day but if I get over tired the tingling and aches in my hands starts up.I revert to 100mg mino daily for a few days and get back to normal that quickly.

    #459952
    Kat0605
    Participant

    Hi Lynne-

    My daughter’s name is Hannah. She is absolutely perfect! I have a picture on my Inspire page.

    I emailed my LLMD to see if they will switch up my meds and give me doxy/mino. Would you keep pulsing the Zithromax? Right now that’s all I’ve been taking since April.

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #460006
    Kat0605
    Participant

    I sent a message to my Lyme Dr asking to start doxycycline now that I’m not pregnant or breastfeeding. She said that she’d rather stay the course with Azithromycin, but we could switch to doxy or mino if I felt strongly. My LLMD is actually on leave, so it’s her nurse practitioner that is handling her patients. She’s not as familiar with my set of symptoms.

    Also, it sounds like she will want to take me off Azithromycin if I go on mino/doxy. Should I ask to keep pulsing the zith?

    I feel like it’s possible that I may be turning a corner. Skin has felt less tight the last couple days and and my mouth definitely feels a bit looser. I’m also getting a ton of sleep right now because we have a baby nurse who comes at night. Unfortunately, we are losing her later this month, so my luxurious 7-8 hours of sleep a night will be going away.

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #460007
    Maz
    Keymaster

    Hi Kat,

    If I was in your situation, I’d ask the doc for minocycline (daily) and add it to the azithromycin. Minocycline is the preferred antibiotic for scleroderma due to its immune-modulating effects (in addition to its bacteriostatic antimicrobial effects). It is not unusual for LLMDs to prefer the use of a combination abx protocol because often there are coinfections and Lyme is such a pleomorphic bug, it needs to be targeted from as many angles as possible…besides which most SD folks prefer not to pussyfoot around this rheumatic disease and to be as aggressive as possible to knock it back.

    Enjoy this time with your night nanny for the baby!!! The good sleep will be such a boost for you as you recover from the birth.

    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.

    #460081
    Kat0605
    Participant

    Thanks Maz! I start mino today. My skin seems to be softening a bit, though now I’m having worsening GI and shortness of breath symptoms. Im 4 momths in and feel like I’m maybe 15% better. Aiming to be 50% better in 2.5 months. Hopefully mino provides that boost I need!

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #460098
    Maz
    Keymaster

    Thanks Maz! I start mino today. My skin seems to be softening a bit, though now I’m having worsening GI and shortness of breath symptoms. Im 4 momths in and feel like I’m maybe 15% better. Aiming to be 50% better in 2.5 months. Hopefully mino provides that boost I need!

    AP has been described as a two-step-forward and three-step-back dance, all the way to remission. There are usually good stretches and then periods of not such good ones where you can feel like you’re going backwards. If this happens, it’s perfectly normal, but can be dismaying, too, and sometimes it’s just a flare or the protocol might need tweaking a bit. The first year with SD is really about slowing down the progression, after which small increments of improvement begin to happen. Early disease, before too much tissue damage occurs, typically responds more swiftly, but how fast the SD freight train moves is different for everybody. As your body is still recovering from childbirth and you’ve been through some big dips in hormones afterwards, this could slow things down a bit, so the main thing is just be kind to yourself, remain your positive self, and keep your sense of hopeful expectancy as this will go a long way to healing. 🙂

    Please come back with updates when you can – the good, the bad or the ugly! Documenting progress can be so helpful, not just for yourself to see how far you’ve come, but also to newcomers who can learn a lot and gain so much hope this way. Thanks, Kat!

    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.

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