Home Forums General Discussion Need some encouragement

This topic contains 5 replies, has 4 voices, and was last updated by  Maz 1 month, 1 week ago.

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  • #460914
    Kat0605
    Participant

    Hi all. I updated my signature with my history and current protocol. I am feeling pretty let down. I had been feeling great after I had the baby in the months of August and beginning of September, but my cycle started back up in full force in September and I have been feeling AWFUL the week of my period. My symptoms started out as very scleroderma-like and have since morphed much more towards the lupus side of the things. My skin is not tight at all anymore and my mouth changes stopped completely, but I do have some swelling in my feet and lower legs and my urine has been foamy sometimes making me think that I may have kidney inflammation. I hate to lose the progress I made on minocycline with my skin, but I am wondering if it’s aggravating the lupus-symptoms. I see a new rheumatologist and my LLMD in mid-November. I want to stay on AP, but am just discouraged with the setbacks of late. I had started thinking that another baby could even be in the cards for me next year, \but now I am just scared to risk it. I would love to hear your stories of similar symptom morphing and of AP success.

    Thank you!

    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

    #460915
    Maz
    Keymaster

    Kat, sorry you’re going thru a rough patch and not at all easy with a new baby to care for. If I can help to reassure you, this is very common after delivery, due in part to the crash in hormones, post-partum. It is rarely a straight line to remission and more like a three step fwd and two step back dance. Add to this that female Lymies experience regular flaring with their cycles. It might also be due to fluctuations in hormones – peaks in hormones providing some degree of steroidal relief (as in pregnancy most women find their rheumatic disease vanishes) but also enabling less immune surveillance over microbes.

    In the same position, I’d place heavy emphasis on detox, diet, and tweaking my protocol….getting glutathione levels up and increasing antioxidative strategies to lower inflam. You are fortunate that your LLMD has also just had a baby, so is likely right there with you to help you thru this rough patch and get you back on track. Pregnancy and birth takes so much out of we women.

    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.

    #460924
    Pinkmoth
    Participant

    Kat,
    I know maybe it isn’t much help to say this but when I’ve hit rough patches here and there, I try to remember what it was like when I was at my worst, and am thankful to not be there anymore. I also like to think about how it got better even when it was the worst, so it will likely get better again.
    It’s easy to feel like one’s current state is a permanent state but it’s rarely the case, it seems. Try to keep in mind that it’s temporary and that you will again reach the point where you got to when you were feeling great

    #460968
    Kat0605
    Participant

    Maz and Pink Moth- Thank you so much for responding. I was having a bad couple days and then have felt GREAT the last week. It truly is 3 steps forward 2 steps back. I had been a bit worried about my daughter’s 4 month since I have heard that 4 months postpartum is when autoimmune diseases FLARE. Exactly 4 months after my 2nd miscarriage is when my symptoms started in full force and was also the month I got pregnant with my daughter. Luckily, my regimen continues to work. I continue to be so thankful to this site and all the volunteers that have kept Dr Brown’s protocol alive. My daughter and I are both flourishing!

    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

    #460976
    kater
    Participant

    So happy to hear this news Kat! Yes always be reminded this is a tango and it helps me to not despair when I remember the 2 steps back are just part of the dance. Not a dancer though so I probably got the steps all wrong lol. Blessings to you and your babe.
    Enjoy!
    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

    #460978
    Maz
    Keymaster

    Kat, that’s lovely news! Hang in there….it’s rarely a straight line to remission and bumps in the road are the norm rather than the exception. It helps to re-read the books and the patient stories….I must have re-read the book 5-6 times and nearly memorized it in the first year! Lol

    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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