Need advice on Lyme

[BeatingRA]

My 14 year old son was just diagnosed with Lyme. Last week I noticed he was talking without moving his jaw and asked about it. It had been bothering him for a few days. On Monday this week I noticed he was limping and he said his knee hurt. When I checked, it was very swollen. His pediatrician examined him and diagnosed him with Lyme on Tuesday and prescribed 21 days of doxy. She also did a Lyme titer which came back positive the next day. I don’t have a copy of the test yet.

Is 21 days enough? He is going to be away at summer camp June 29 until July 17. His 21 days of doxy will end around July 7 or 8. I called and setup an appointment with a LLMD for July 23. I am thinking of asking his pediatrician to extend the doxy until we can see the LLMD but I have am worried she won’t.

I know there are no doctors here but am seeking advice.

Thank you.
Theresa

[Maz]

@BeatingRA wrote:

My 14 year old son was just diagnosed with Lyme. Last week I noticed he was talking without moving his jaw and asked about it. It had been bothering him for a few days. On Monday this week I noticed he was limping and he said his knee hurt. When I checked, it was very swollen. His pediatrician examined him and diagnosed him with Lyme on Tuesday and prescribed 21 days of doxy. She also did a Lyme titer which came back positive the next day. I don’t have a copy of the test yet.

Is 21 days enough? He is going to be away at summer camp June 29 until July 17. His 21 days of doxy will end around July 7 or 8. I called and setup an appointment with a LLMD for July 23. I am thinking of asking his pediatrician to extend the doxy until we can see the LLMD but I have am worried she won’t.

I know there are no doctors here but am seeking advice.

Hi Theresa,

When my daughter had a tick bite a few years ago, the ped infectious diseases doc said he would not treat until she exhibited symptoms, even with a positive Lyme test. His view was that lots of people get bitten by ticks and it doesn’t mean they will get Lyme. So, it’s pretty great going for the doc to provide 21 days of doxy to your son before his Lyme results came back and quite astute in terms of providing a clinical diagnosis based on his symptoms. Most docs are afraid to say the word, “Lyme,” let alone diagnose it without a bulls-eye or positive test. After seeing the ped ID, I then took my daughter to my LLMD and he provided her with 2 months of doxy, based on seeing the tick I kept in a baggie and the bite with expanding rash between her toes. He didn’t bother with a test, saying it was probably too early to get a positive result, anyway, and that it wasn’t worth waiting for any symptoms to occur as there was the concern that an infection could produce the same explosive outcome for her (RA) as it did for me (genetics). Just safer to treat early and aggressively with a relatively safe antibiotic than to wait for symptoms to appear Russian-roulette style (and potentially a long-term battle for her health) as the ped ID was telling us. Crazy how such diametrically opposed opinions can exist in medicine today, eh?

If your son was infected recently (which you may not know without a rash), he could do very well on just 21 days of doxy. However, you are wise to ask his doc for a further month (if poss) and also to get him checked over by a LLMD, because he should be assessed for coinfections. Due to the fact that you have rheumatic disease in your family, an LLMD would likely take the stance that it’s safer to treat prophylactically than not to treat and wind up with a chronic autoimmune manifestation of Lyme and other TBDs (tickborne diseases).

Children, on the whole, have pretty healthy immune systems and recover faster then adults if they are diagnosed and treated quickly. In fact, 90% of folks do well on several weeks of doxy, even if they have later stages of infection. There are the 10% of us, however, who just have that “perfect storm” of things that don’t get well so quickly and have a much harder time. They don’t know why – maybe strain variations (some types of Lyme are more virulent than others), coinfections, overall health states and co-morbidities, hormones, age, stress, etc.

I’m just a patient, like you, but having gone through this myself, I would not take any risks with my child’s longterm health. Once Lyme gets into the joints (and nervous system), some LLMDs also believe this warrants IVs rather than orals. You’re so wise not to just accept the 21 days doxy regimen and to look more deeply into this. Honestly, if it was me, I’d be asking for doxy coverage for the whole time my child was in camp. The risk of being bitten again on top of a recent infection increases the odds of a tougher outcome. If my daughter had developed neurological signs (slurred speech/bell’s ‘palsy) and joint symptoms, I’d be pushing for aggressive, early treatment for well beyond when symptoms had resolved, as it’s just not worth taking the “wait and see” approach. When these bugs get entrenched in the body, they are a devil to treat and may go into periods of latency and then make comebacks down the road.

You’re doing all the right things, Theresa, so stick with your mother bear guns and your son will have the best chance of dealing with this. 🙂

[BeatingRA]

Hi Maz,

Thank you so much! I appreciate the quick and thorough response.

Theresa

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