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Thread: Lyme WWYD

  1. #1
    maydaymommy is offline Platinum level (1000+ posts)
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    Default Lyme WWYD

    Does anyone have experience with a diagnosis of Lyme that is easily resolved with a standard course of an antibiotic for 21 days?
    I need to figure out if I should have DS2 follow just that, as prescribed by our pediatrician’s office. I would have him re-examined soon, to see if his joint pain has gotten better. OR do I get him in with the best Lyme Literate specialist, as soon as I can??

    The regular treatment has to work for most people right? Maybe I just don’t know them. Or, maybe it’s usually no big deal, and that’s why we don’t hear easy, normal Lyme stories? I browse the boards sporadically now. But I was regular enough for long enough to have a very thorough education in the debilitating (and controversial) effects of Lyme. I was super well-informed 7 summers ago, when DS1 had Lyme. “Fortunately” my pediatrician had recently watched a relative suffer from undiagnosed Lyme and “regular” medicine failed her. He considered DS1’s blood test to be positive for Lyme, though his colleagues wouldn’t have. DS1 didn’t have any symptoms (besides a little lump on the back of his head) until after he finished the 1st round round of Doxycycline. He ended up fully recovered - after 6 months of facial tics, brain fog, exhaustion, cognitive gaps, and some strange, involuntary physical movements.

    We just found out DS2 tested positive for Lyme, with similar test results (that not every doctor would consider worth treating). We took him to the dr because the complaints about different body parts hurting were incessant. I thought he was either faking or we needed to see an orthopedic dr., or maybe a psychiatrist/therapist. He’s had some aches & pains leftover from a sport he did for most of his life, so not all the discomfort was new.

    This is complicated more because DS2 is supposed to go to overnight camp, for 7 weeks, in about 10 days!
    One thing I know for sure is that I can’t send him to camp, which is like his lifeblood, if I won’t be able to take him out & back into their “Covid Bubble.” As much as I like the camp medical staff, I know I need our eyes & professional hands on him, to make sure he is healing.
    Big Brother 5/07
    Little Brother 9/09

  2. #2
    o_mom is offline Pink Diamond level (15,000+ posts)
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    DS1 had it last summer. He was IgM positive, IgG negative, which showed it was a recent infection (and fit the timeline for exposure and symptoms). We did 28 days of Doxy just to be safe, though he was mostly recovered after 14 days. He has had no residual symptoms at all.
    Mama to three boys ('03, '05, '07)

  3. #3
    maydaymommy is offline Platinum level (1000+ posts)
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    Quote Originally Posted by o_mom View Post
    DS1 had it last summer. He was IgM positive, IgG negative, which showed it was a recent infection (and fit the timeline for exposure and symptoms). We did 28 days of Doxy just to be safe, though he was mostly recovered after 14 days. He has had no residual symptoms at all.
    YAY! Glad to hear it. Same w/ the IgM & IgG.
    Big Brother 5/07
    Little Brother 9/09

  4. #4
    MSWR0319 is offline Diamond level (5000+ posts)
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    I had Lyme 9 years ago. This was right before they recommended 21 days of an antibiotic. Even though I had all of the information on here from Melbel, no one would give me anything more than 14 days. To make matters worse I couldn't take doxycycline and so I was given another antibiotic. My joint pain, bullseye, and other issues all resolved within a week so I didn't try to get any more once the two weeks were finished. I never had issues again thankfully. DH completed a two week cycle of doxy the year before that for Lyme and has never had any issues since. I consider us so lucky since this was before the 21 day regiment became more used.
    Last edited by MSWR0319; 06-18-2021 at 05:53 PM.

  5. #5
    JBaxter's Avatar
    JBaxter is offline Pink Diamond level (15,000+ posts)
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    i sent a message to Mebel she has vast amounts of Lymes knowledge with her history.
    Jeana, Momma to 4 fantastic sons

    Everything happens for a reason, sometimes the reason is you're stupid and make bad decisions

  6. #6
    Melbel's Avatar
    Melbel is offline Diamond level (5000+ posts)
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    Just like COVID, some people have uncomplicated cases, and others get hammered. As you seem to recognize, there are two standards of care for Lyme disease - IDSA and ILADS with two evidence based treatment guidelines. The IDSA approach is essentially that Lyme is hard to catch, easy to treat, co-infections are rare, and if you relapse with exactly the same symptoms after stopping antibiotics, then you have "post treatment Lyme disease syndrome" (a label that leaves patients high and dry). ILADS takes a more patient centered approach and doctors routinely test for tick-borne co-infections. Most Lyme specialists recommend a minimum of 4-6 weeks for early, non-disseminated infection because Lyme has a very slow replication cycle. Lyme specialists are also more likely to use combination therapy to cover the cyst form of Lyme (i.e. Tindemax, Flagyl, artemisinin) and co-infections. Additionally, it is thought to be better to error on the side of over treatment given the debilitating and sometimes deadly symptoms of late stage Lyme.

    You can find links to various treatment protocols here: https://projectlyme.org/resource/res...ent-protocols/

    The CDC estimates up to 20% of patient suffer from symptoms after initial treatment "Long Lyme", but there is published literature to show it is far more prevalent. See e.g.
    https://journals.plos.org/plosone/ar...l.pone.0116767
    https://pubmed.ncbi.nlm.nih.gov/22294245/

    I have served as an admin for 13K+ parents group for about 8 years now and have seen far too many young lives destroyed. We never saw a tick bite or rash, leading to delays in diagnosis and treatment. We also had numerous confirmed co-infections that debilitated my previously healthy child and caused heart failure in me (not to mention premature deterioration of joints in my back and knees). The IDSA standard utterly failed our family. After years of relapse, a triple therapy discovered by researchers at Johns Hopkins finally allowed me to go off antibiotics without cardiac relapse.

    It sounds as though you started antibiotics after testing? If so, he probably had the infection for at least a few weeks - long enough for dissemination. Did the doctor test for co-infections (i.e. Babesia, Bartonella, Ehrlichia, Anaplasmosis, etc.)? Often those who require more extensive treatment have co-infections or other health issues that cause immunosuppression. Note that Babesia cases are becoming more common and require anti-parasitics (antibiotics will not cover).

    A word of caution to those who had "easy" cases of Lyme - relapse may occur months or years later after another stressor (infection, illness, mold, surgery, hormone fluctuations, divorce, etc.). I have seen these scenario far too many times.

    If it were my child, I would set an appointment with a reputable, vetted Lyme specialist as a backup because it can take a long time to get in. I would request the pediatrician to extend the treatment to six weeks given the apparent lapse in time between infection and initiation of treatment. I would ask pediatrician to test for co-infections if not already done (preferably with more sensitive labs). Finally, I would take steps to decrease inflammation via diet (low gluten, dairy, sugar for starters; avoid processed foods). I would not send my child to camp while treating and/or symptomatic. In addition to wanting to watch him, I would be concerned about another tick bite at camp while he is already fighting an infection, lack of sleep, sun sensitivity with Doxy etc. Feel free to message me for more guidance/resources.

  7. #7
    MSWR0319 is offline Diamond level (5000+ posts)
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    Quote Originally Posted by Melbel View Post

    A word of caution to those who had "easy" cases of Lyme - relapse may occur months or years later after another stressor (infection, illness, mold, surgery, hormone fluctuations, divorce, etc.). I have seen these scenario far too many times.
    This is a great reminder. I have told DH that if I ever start having weird symptoms or get so sick and no one knows why, to make sure to check for Lyme and co-infections. I'm always paranoid that it's going to pop back up again.

  8. #8
    chlobo is offline Diamond level (5000+ posts)
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    If this is a recent infection I would absolutely do the antibiotics *while* finding a lyme specialist. 21 days may not be enough. I usually see at least 28 days to cover one breeding cycle.

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    I did the 21 day regimen and it resolved all symptoms. That was about a decade ago and no problems since.

  10. #10
    ezcc is offline Gold level (500+ posts)
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    I had lyme 10 or so years ago, and it resolved after a round of Doxy. DS2 has had lyme twice! when he was 5 and then again when he was 7, he did a round of amoxycillin each time and it resolved with nothing lingering.

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