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This topic contains 3 replies, has 2 voices, and was last updated by  Maz 5 months, 2 weeks ago.

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  • #460327
    Kat0605
    Participant

    My ANA had not been positive. When I started treatment for Lyme- Azithromycin and Ceftin, my symptoms were scleroderma-like. My skin was tightening, I had a feeling of my mouth shrinking, swelling in calves and fingers.

    The last 3 weeks since I’ve been on mino, my main symptoms have been flank pain, muscle weakness, and tingling. My skin feels very very loose, rubbery actually. My OB sent
    me to my GP for bloodwork and my ANA for the first time in a year came back positive with a high titter of DSNA. This was done by Elisa, so I still need to get the ANA done by IFA, but could AP have caused my sclero to morph to Lupus? I’m so confused. I see my rheumatologist Monday and my LLMD on Wednesday. I’m wondering if I should be asked to switch to doxy or if I should drop the tetra all together. I hate to loose the progress I’ve made with skin tightening by dropping mino and because it’s only been a month I can’t believe it’s DILE. What are you 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

    #460328
    Maz
    Keymaster

    Kat, it’s quite common for rheumatic seropositivity to take time to emerge. A mixed connective tissue presentation is also pretty common with Lyme disease. I’m not an expert, but it’s unlikely to be DILE this quickly. More likely that the mino is hitting the target and your labs are reflecting new herxing. All my labs worsened significantly for a few months before they started to slowly come down. It’s great you’re working with an LLMD, so that you can contemplate more than just monotherapy and who would likely be happy to check for DILE if needed….but DS-DNA is more reflective of real lupus. If that was negative, but single-stranded anti-DNA (SS-DNA) was positive with homogenous ANA and anti-histone ABs, you’d be looking more at DILE.

    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.

    #460332
    Kat0605
    Participant

    Thank you Maz. I haven’t read much about AP with lupus. Do people with lupus take AP? I think if anything childbirth may have triggered the change in my symptoms? As I mentioned in another post, I’ve had more “good days” of late. They usually are associated with days I get great sleep. I would hate to stop the mino if I’m getting better I just hope it’s not affecting my liver or kidneys.

    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

    #460334
    Maz
    Keymaster

    Thank you Maz. I haven’t read much about AP with lupus. Do people with lupus take AP? I think if anything childbirth may have triggered the change in my symptoms? As I mentioned in another post, I’ve had more “good days” of late. They usually are associated with days I get great sleep. I would hate to stop the mino if I’m getting better I just hope it’s not affecting my liver or kidneys.

    Hi Kat,

    Yes, people with lupus use AP. Usually, lupies are a bit more sensitive than other rheumatic types, so dosing is usually lighter, though this can vary between individuals. There is Karen N’s remission story on the site you can read. I talked to her back in 2008 for a remission corner story in the old RBF news eBulletin. She had both lupus and dermatomyositis and managed to achieve remission comparatively fast.

    Most LLMDs will monitor liver and kidneys every 1-3 months or so with a complete metabolic panel (CMP), so if this is the case, you should be okay. If there is any concern, you could ask for monthly monitoring. There are also private labs where you can order your own labwork if a doc doesn’t monitor as regularly as makes you feel comfortable.

    I think you’re right that the pregnancy and birth has revealed some new stuff for you. Pregnancy raises hormone levels pretty high to sustain the fetus and prevent maternal rejection. In effect, the mother’s immune system is quieted during gestation and, once the infant is born, it’s pretty common for rheumatic disease to start or flare up again (as Dr. Brown described in the book).

    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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