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picture- lyme in baby?

My son is 15 mo and is very delayed and has autism like characteristics.

He had this rash at 2 months old. At the time I assumed it was just another weird baby rash.

Could it have been lyme?
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Avatar universal
PS ditto what Ricobord says above.  
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Avatar universal
PS -- I type faster than I think sometimes.  The sentence above saying:

"I encourage you to get your baby tested from his regular pediatrician to see what the results are. Know that they can be false negative."

should instead say:

"I encourage you to get your BABY'S TESTS from his regular pediatrician to see what the results are ...."

And in general, it's a good idea to *always* get copies of all tests run -- keep a binder or file of them at home in case you sometime decide to see another doc for a second opinion in the future.  Sometimes getting a lazy person at a doc's office to copy EVERYthing in your file is hard to come by ... and because you don't see the original file yourself, you don't know if they really, really, really copied everything, tho I think by law you are entitled to everything.  
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Avatar universal
Welcome to MedHelp --

It's a good question you are asking -- and we can give you some comments, but the best thing to do would be to take your baby to an MD who specializes in Lyme disease for an evaluation.  Many docs think they are experts in Lyme, but there is a split in the medical community that makes it difficult sometimes to find a Lyme doc with an open mind.

No one here is medically trained, so this is just unofficial commentary.

Lyme rashes look different on everyone -- some of us (including me) never saw a rash or a tick.  Those who do see a rash often see a circular rash that looks like a 'bullseye' -- a red dot that spreads out from the bite site and begins to look like a red circle with a small red dot in the middle, with a clear area between the center dot and the outside circle.  Like a bullseye, or the 'Target' store sign, but usually with only one outer circle and the central dot.  

The rash can, so I read, fade over time, but everyone is different.  That's partly what confuses the docs:  there are some symptoms like the circular rash, but not everyone gets them or to the same extent.  I never had a rash or saw a bite, but I sure had Lyme.

Another problem with diagnosing (or ruling out) Lyme is that the tests most docs use to confirm a Lyme diagnosis are not very accurate:  the usual tests often say 'no infection' when really there is.

Lyme specialists understand how faulty the usual tests are, and they often use a different test, called a PCR test, that looks for bacterial DNA in the bloodstream instead of the immune system reaction to an infection.  The reason the immune-system test is sometimes inaccurate is that Lyme bacteria can (and do) suppress the immune system, so the bacteria can be there but not detected by the usual tests (called ELISA and Western blot).  Many docs still rely entirely on the ELISA/Western blot tests and will not consider a Lyme infection if the test is negative.  Unfortunately, that leaves many people who have Lyme without a diagnosis and without treatment.

All that said, I too would be looking for explanations for your son's developmental delays, and Lyme is one thing I would also look at.  I suspect the same thing happened to someone in my extended family, but his parents settled for a diagnosis of Asperger's syndrome without exploring the possibility of Lyme.  

Even if your son did not have a rash, in whatever configuration, it might be worthwhile to have a Lyme specialist take a look.  I would likely do that myself -- just to be sure.

The trick is finding a doc who really understands Lyme -- the split in the medical community has docs on one side who understand that Lyme and the other infections the 'Lyme' ticks often carry and also docs on the other side who firmly believe that Lyme is rare, hard to get, and easy to cure with a couple weeks of doxycycline.

'Doxy' is effective, from what I read, early in the infection, but often we don't know when we were first bitten -- I never had a rash and never saw a tick, and the same is true for others I know, and have no idea when I was bitten.  Unfortunately, many docs don't know this and still require that a tick be seen and be embedded in the skin for at least X days, which is not accurate.  Those same clueless docs often do not understand that the 'Lyme' can (about half the time) also carry other infections not related to Lyme, but which are just as miserable as Lyme, and need separate testing and treatment.

So yes, I would get my baby checked by a knowledgeable Lyme doc.  Since every doc thinks s/he knows all there is to know about Lyme, and the docs who follow the 'Lyme is rare, hard to get and easy to cure with 2 weeks of doxy' approach (also ignoring possible co-infections) are pretty common, being sure you find a doc who thinks bigger thoughts is very important.

ILADS is short for 'International Lyme and Associated Diseases Society' and is a voluntary group for MDs who understand that Lyme is more complicated than so-called mainstream medicine would have it be.  If you send an email to    -- contact  [at]    ILADS   [dot]   com -- and tell them the area you live in and how far you can travel and that you need the names of Lyme specialists who specialize in babies, they can send you names of ILADS member docs in your area.  Once established, appointments are maybe once a month, so it's not like you'll be going there every day or even every week, and the hassle of driving is worth finding the right doc.

There is, to my understanding, no test to be an ILADS member doc, so when you get the name(s) from ILADS, scout them online to see what people say generally.  If you get only one name but it doesn't seem to be a good fit, ask for another name.  Treatment often runs for months, so you want a doc you are comfy with.

(The reason treatment can run for months is that the Lyme bacteria reproduce very slowly, and it is when reproducing and the cell wall is broken open that they are most vulnerable to antibiotics.)

Okay, more data than you wanted, but let us know how we can help.  You can also post another, separate message here saying 'Need LLMD for baby near Memphis TN' or something like that -- and if someone has a recommendation, they can send you a private message through this site.  We don't state LLMD's names in the open here, because they are often harassed by state and local medical board who don't understand Lyme for the complex illness it is.

If your baby doesn't have Lyme, then the doc may well be able to give you some ideas of what's going on.  When you contact ILADS for a doc recommendation, you might specify that you prefer a pediatrician who is also an immunologist.  (Lyme docs started their medical careers as regular docs and have over time specialized in Lyme, tho they often also trained in a specialty such as immunology or pediatrics.)

I just searched online for   -- LLMD pediatrician --   and got lots of hits that look promising.  Best wishes to you -- and if you don't feel the first doc is a good fit, go to another one.  Hang in there!  Let us know how you do --
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Avatar universal
P.S.  There have been others on this forum who had hives-like rashes with Lyme.
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Avatar universal
Sometimes Lyme causes a splotchy rash or even hives. Unfortunately, the message about Lyme from the CDC and IDSA has been terribly oversimplified to describe a bulls eye rash, swollen knees, and headaches.  Way too many doctors will not diagnose it without a bulls eye rash, even though less than half of patients get that rash.

Lyme is not well studied in babies. In fact, I don't think it hasn't been officially "studied" at all. Only doctors who have treated a lot of Lyme babies know what to look for. Autism-like symptoms are common. There was a woman on this forum a year or so ago whose son got it from her in vitro. He was on the verge of being diagnosed autistic when she figured out they both had Lyme.  (Being born with it seems to be harder to treat than acquiring it after birth.)

Unfortunately, the CDC two tier testing protocol is very controversial. The "science" behind it makes no sense.  Doctors who are familiar with the various manifestations of Lyme say that the testing easily misses half of Lyme cases, especially those in the first month of infection and a year or more after infection.

I encourage you to get your baby tested from his regular pediatrician to see what the results are. Know that they can be false negative. Also know that many doctors are intimidated by the controversy around Lyme DIsease, and there are stories of doctors refusing to even run the tests without a tick bite, bulls eye rash, and/or swollen knees.

If your baby does have Lyme, standard treatment of three weeks of Amoxicillin for young children often fails in a late stage infection, so to be sure, you'll need a doctor willing to buck the "recommendations" in order to reduce the odds of your child relapsing.

In the meantime, look for a LLMD, a Lyme Literate Medical Doctor near you. You can contact a local Lyme support group or a state Lyme Disease Association, or even ILADS.  The most visible pediatric specialist is Dr. Charles Ray Jones in MA. (He has been persecuted extensively because he dares to challenge the dogma. He has treated over 15,000 children from all over the world and knows more than anyone about Borreliosis in children.)   A good LLMD will know how to differentiate between autism and Lyme.  (My LLMD actually treats a number of children with autism who do not have Lyme, because they benefit from a number of the same treatments that help Lyme patients, such as addressing the gut issues, yeast issues, heavy metals, et.al.)

If there isn't one close by, don't be afraid to travel to get to one or to pay out of pocket costs. Time matters. A baby with late stage Lyme can still recover.  An older child with a years-long infection can have permanent neurological damage.  It's hard to comprehend the controversy and politics surrounding Lyme DIsease, but it's the patients who suffer.

(Sorry... I've assumed you're in the U.S.  If you're in another country, the issues may be different, and it might be even more difficult to find a LLMD.)

I'm glad you're looking into the possibility of Lyme while there's still an opportunity to deal with it effectively!  Keep us posted!
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