Want to Know What Terrifies Biomed Parents?

In my last post, about Martin’s disastrous Disney morning, I mentioned a nasty insect bite on Martin’s foot that’s had me worried.

I suppose many parents worry about insect bites. They’re itchy. They can become infected. Some folks have allergies; I myself react so badly to mosquito bites that I have to rely on antihistamines. There is West Nile Virus to worry about and, elsewhere, malaria.

For many of us in the autism-recovery community, I think, bites provoke a special, heightened fear: Lyme disease.

Lyme disease, which is transmitted by ticks, primarily deer ticks, has become endemic in many parts of the United States. Lyme disease is also implicated in the issues that many children on the spectrum have. Worst of all, because Lyme disease is so hard to diagnose, and can mimic other problems, it is difficult to get proper treatment.

In November 2012, a test showed Martin slightly positive to Lyme and one of its common co-infections, bartonella. We treated him with a course of takuna and other antimicrobials, and later tests showed no indicators for Lyme. But who knows? I dread/fear another infection, or one already present and unable to be diagnosed. When Martin plays outside, I spray him with a combination of essential oil in witch hazel or apple cider vinegar. I’m not going to use the chemical repellants, and I need something to keep the bugs away.

When Lyme disease is transmitted, a tick bite often will form a “bull’s eye” rash, a spot surrounded by a red circle. Can you imagine how I freaked out when Martin’s babysitter, Samara, sent me this picture of Martin’s foot, accompanied by a note that the bite seemed to be bothering him?

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In retrospect, “freaked out” might be an understatement. I exited a business meeting to research Lyme onset and how long the rash should last. I posted the picture to an ASD group on-line, seeking advice. Within ten minutes or so, Samara sent another picture indicating that the bull’s-eye-like rash had faded already into a more traditional insect bite.

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That seemed to be good news; from my quick research, a true bull’s eye would last longer. Also, Samara reported that the bite was now itchy; according to the moms who weighed in on-line (sometimes trustworthy, sometimes not), a bull’s eye usually doesn’t itch.

These developments calmed me enough to stay at work and not demand that Samara bring Martin to meet me at the pediatrician’s office. I did email the photos to Martin’s MAPS doctor, who recommended additional anti-microbial drops as a preventative measure, and told me to visit the pediatrician or emergency facility, for antibiotics, if we noticed any other symptoms. We didn’t, thank goodness. We stayed on the extra anti-microbial drops, in case.

When the Disney morning from hell rolled around, my mind returned to the bull’s-eye-cum-mosquito-nibble. Sometimes ASD recovery feels like a continual series of freak-out moments.

Or maybe that’s just what parenting feels like.

10 thoughts on “Want to Know What Terrifies Biomed Parents?

  1. I have a kiddo with Autism and Lyme. Not to alarm you, but that rash would be enough for me to be at a Lyme Literate Medical Doctor. Lyme does not have a cure – it goes into remission. I have had it for 18 years+ as well as hubby. My son has had it for a minimum of 4 years, maybe more. None of us ever had a bullseye rash (less than 40% of Lyme positive patients get the rash).

    Not trying to worry you – just trying to pass on information. I don’t wish this on anyone. Any Lyme doc will tell you —- Bullseye rash = Lyme.

    • Thanks for your comment and concern! I want you to know that I took Martin to an LLMD this week. He did not see any signs of an acute infection but said (as has our MAPS doctor) that chronic Lyme is likely present. (We’ve treated chronic Lyme in the past.) The LLMD did want to think about doing a course of antibiotics immediately, just in case a new infection is present, but after consultation with our MAPS practitioner, we decided instead to treat with non-pharmaceutical antimicrobial drops, which can address both acute and chronic Lyme, and (I’m trusting the doctors on this) have been shown to be as effective as antibiotics, without the same negative effects on the gut. We are also getting a blood culture, still trying to determine the extent of any chronic infection, and the LLMD and MAPS practitioner are talking to make sure everyone is on the same page. Will keep you posted via the blog!

  2. Hi, I’ve really enjoyed reading your blog. Martin is a lot like my ds6 and so reading about your treatment choices has been very helpful Just wanted to mention that reading about the Disney trip sounded similar to experiences with my son. Along with ASD, he was recently diagnosed with PANS and then lyme and co-infections. The anxiety and OCD have improved so much with treatment of the infections. Because so many of our ASD kids have congenital lyme, please consider having him looked at by a LLMD. We did Igenex testing two years ago but it was misinterpreted by our DAN as negative and we wasted a year in not getting treatment. Learning that lyme is a clinical diagnosis and that anyone who suspects lyme should see a LLMD. Best of luck!

    • Thanks for your concern, and see my response to The Person Next to You’s comment. We are in treatment with an LLMD, and have treated chronic Lyme in the past. There are so many pieces to the puzzle of ASD, but I know we’ll figure them out in the end.

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  5. Hi there! I just found your blog and have only read a couple of entries so forgive me for getting ahead of myself here but have you done ACC? Andrew Hall Cutler seems to think that it also takes care of the lyme symptoms when you remove metals from the body…and that that’s the only thing that will ultimately get rid of yeast.

    • I have not done ACC with my son, though I am well-versed in the Andy Cutler protocol. Sometimes it seems to me that there are different camps all believing that every facet of autism boils down to one key. For ACC devotees, obviously, it’s metals, and low-dose chelation is needed. Others think parasites are the prime enemy, and some believe no kid will make progress unless Lyme is tackled, and others are determined to work through vaccinations homeopathically. I haven’t been able to sign onto any single-greatest-enemy approach. We live in a toxic environment, and our kids are assailed from all sides. I always want my son to get better faster, true. But for what it is, I think the multi-faceted approach has the best chance for long-term success. This definitely doesn’t mean I don’t support ACC; I do, and I’ve seen many families make great strides with low-dose chelation. I do not, however, think it is the key to treating my son’s Lyme infection. But that’s just me. Are you doing ACC with your family? If so, please share. I rely on others’ experiences. And thanks for investigating my blog!

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