Tag Archives: lyme

Current Issues

Posted on by findingmykid
6

We are off to visit Martin’s biomed doctor. I made a list of issues to discuss, which includes the following:

  • skin rashes, in the form of blemishes that Martin scratches and picks at until they bleed;
  • itchy skin overall;
  • impulsively calling out words he doesn’t mean, in a manner almost like Tourette Syndrome (Martin does not have Tourette);
  • obsession with foods, allergies, which foods he can or cannot eat, which are treats, and so forth;
  • trying to understand tough situations by putting Minions into those situations, like, “Bob [a Minion] was on the playground and another kid said he couldn’t use the swings. Is that nice?”;
  • constantly apologizing, which has been an ongoing habit.

(There were other issues on the list, too personal for sharing on the blog.)

What are your guesses, readers? Parasites? Metals? Lyme activity because we started using cryptolepis to treat babesia? A different form of the yeast beast? Dry winter air? Noticing differences between himself and other kids?

I’ll fill you in after our appointment with the biomed doctor.

And before you worry that Martin’s recovery is off the rails, I will add the following:

First, Martin’s self-awareness is blossoming. Even his teachers have noticed. After school last week, Martin confessed that he had hurt his friend Nicole’s feelings by calling her “racist.” (In light of Black History Month and Martin’s classroom unit on civil rights, our family has been doing a lot of talking about racism and our country’s legacy of segregation. I think he was angry at Nicole, and “racist” was the first insult he happened upon.) He added, “Sometimes words come into my head that I know I shouldn’t say, but I can’t stop them before they come out of my mouth.”

Second, this morning, by phone, Adrian said, “This past month or so, I’ve been having these awesome moments with him, where he’s just acting like a regular kid, and I can finally think, ‘This is it. This is the way it’s supposed to be. This is the reward’.”

What Does a Beef Allergy Have to Do With Lyme Disease?

Posted on by findingmykid
6

Although contrary opinions exist, it seems like a tick bite is not the only way to get Lyme disease. A pregnant woman can pass Lyme disease to her unborn child. Other forms of person-to-person transmission are possible, including even transmission sexually. Lyme disease can also be acquired from insects, or (non-tick arthropod) spiders, or theoretically from a blood transfusion.

A tick bite is, however, the most common way that Lyme disease is transmitted.

Something else a tick bite can cause is a red meat allergy.

Seriously?

Yes, seriously. From the American College of Allergy, Asthma, and Immunology (ACAAI):

“A bite from the Lone Star tick can cause people to develop an allergy to red meat, including beef and pork. The Lone Star tick has been implicated in initiating the red meat allergy in the US and this tick is found predominantly in the Southeast from Texas, to Iowa, into New England. A meat allergy can develop any time in life. If you are allergic to one type of meat, it is possible you also are allergic to other meats, as well as to poultry, such as chicken, turkey and duck.”

Fabulous! So far Martin has shown the allergy only to beef. On several occasions, eating beef has left him with red spots around his mouth and onto his chin.

 

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Along with my own empirical observations, traditional (patch) testing has pointed to beef allergy, along with milk allergy. I suppose that could be the real link; the same ACAAI website (linked above) says: “Studies have found that a very small percentage of children with milk allergy are also allergic to beef.”

But, if it is Lyme, look at that list—“other meats, as well as to poultry, such as chicken, turkey and duck.” Will we need to cut all those? I’d like to say that maybe Lyme disease will return Martin to veganism earlier than planned. I can’t say that, though. Martin loves seafood. When asked, recently, to name his five favorite foods, this is the list he came up with (in order):

  1. Octopus.
  2. Calamari.
  3. Fish.
  4. Lollipops.
  5. Shrimp.

Don’t even get me started about the fact that my son’s favorite food is an intelligent, advanced creature like the octopus.

The Lyme-beef link, best (?) evidence suggests, lies in “Alpha-Gal.” From PBS:

Though it hasn’t been scientifically proven, researchers think the Lone Star tick produces a sugar from its gut called galactose-alpha-1,3-galactose, or “Alpha-Gal.” In some cases, the human immune system develops an allergic response to that sugar. Because Alpha-Gal is also found in red meat, a bite by the Lone Star tick may translate to an allergic reaction to anything from beef hamburgers to bacon. Repeated tick bites can potentially cause the antibody level of Alpha-Gal to rise, worsening reactions.

That explanation would make sense for Martin, whose immune system has been presenting all sorts of new allergies, some that befuddle me still.

For now, no beef for Martin. Because he hasn’t (yet?) presented with allergic symptoms to other mammalian meats, I’ve substituted bison or elk in his meatballs. I also use turkey—but no chicken at this time, because according to naturopathic food-sensitivity testing, we should be avoiding chicken. The naturopathic testing seems like so much hocus-pocus, sometimes, but what the hey? I mean, if a tick can make my son allergic to cow, who am I to say what’s real anymore?

Juggling Enigmas

Posted on by findingmykid
3

Last month we visited Dr. C, to talk about Martin’s recent slump. Major symptoms remain emotional instability and perseveration. He searches for reasons to melt down. One Sunday evening, he was sitting in the family room watching television with Adrian and started crying. The purported reason? Hours earlier, Adrian had tried to buy him a fresh orange juice but the gym café was out of fresh orange juice. The meltdown was bad enough. Worse still, Martin wasn’t able to bring himself back. He slipped into an anxiety rut, crying on and off, even screaming, until bedtime. He couldn’t even eat dinner. As to the perseveration, he’s over Mickey Mouse Clubhouse (hallelujah) but stuck on subway maps and New York City landmarks. He demands constant trips to the City, then tantrums when we can’t go every weekend day.

Aaaaaaaaargh.

I suspected that Lyme disease was playing its dirty tricks. Dr. C, based on seeing Martin, reviewing his latest blood work, and talking though recent history with me, had another idea: parasites. She made a pretty convincing case. For example, Martin had recently developed a tic of nose picking, and it really does seem to be a straight-up tic; he doesn’t take anything from his nose (thank heavens for small favors), just jams his finger into his nose, removes it, and puts it in his mouth. Repeatedly. Which is great for developing social skills with his classmates. Parasites are linked to tics. We’ve been concerned for years about Martin’s biofilm. Biofilm is a place parasites can hide. On and on.

So we have adjusted Martin’s protocol to address parasites and biofilm issues. Already this week, I am seeing some improvement in the tic and his emotional state.

Which is not so say Lyme doesn’t remain a problem. I notice immediate changes when Martin is on MC-BB-1 and MC-Bar-2, or other remedies designed to affect Lyme. Moreover, Martin has recently developed an allergy to beef. What does a beef allergy have to do with Lyme disease? I’m going to leave that as a teaser for my upcoming post, titled “What Does a Beef Allergy Have to Do With Lyme Disease?”

Parasites. Lyme disease. Biofilm. I’m back to feeling like I never really know what’s going on; autism recovery is a constant juggling of issues, and hoping they are the right issues. Sometimes I feel shocked that we’ve made any progress at all.

But clearly we have, so I keep juggling enigmas.

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Christmas kid, examining the loot.

Mid-Air Without a Net

Posted on by findingmykid
9

The past two months have been a struggle. I’ve alluded in the school-themed posts: disruptive silliness in class, lack of social enjoyment/awareness, moodiness. Most worrisome, Martin came off the school bus one day sad. I mean, he seemed really just sad. When I asked for details, he said he was “getting tired” of running at school and of riding the bus. He asked me to pick him up at school the next day. Out of concern for him, I rearranged my schedule and picked him up at school the next day, so he wouldn’t have to take the bus.

Steady, Up, Steady, Up, Steady, Down, Down, Down

The sequence of decline had unfolded this way: Martin has Lyme disease, most prominently, bartonella. Last spring, for Lyme, Martin was on MC-Bar 2™ and a Des-Bio Borrelia-Babesia kit, along with Microbojen™ ACV (subsequently substituted by Tangarana), gymnema, serrapeptase, Boluoke®, and Nose & Lung. He was tolerating that well. In June, after the Des-Bio Borrelia-Babesia kit was done, Dr. C and I decided to increase the Lyme-fighting measures. We stopped MC-Bar 2™ but added cumanda, houttuynia, DesBio Virus Plus, and Clovanol, along with additional supports like Magnolia Stress Aid and Lith-Oro™. The summer was tough, because Martin wasn’t sleeping well, and he exhibited defiance.

One benefit of keeping this blog, for me, is access to real-time impressions of Martin’s conduct. I checked my July and August posts to remember how he was doing.

In August, we ramped the anti-Lyme measures even more. Martin went on the comparatively powerful A-Bart™. Powerful. Not pharmaceutical. In the first weeks on A-Bart, we were in Costa Rica, and Martin flourished. Thereafter, his behavior started to slide. He started school a solid “decent,” whence he slipped to “distracted” and then “discombobulated.” His behavioral lapses looked like die-off-related ROOS. He had bathroom emergencies, i.e., sudden need to pee. I had to cut off his access to Disney Junior; he was so concerned with watching Mickey Mouse Clubhouse that he melted down if the channel guide listed an episode he hadn’t memorized, and he perseverated constantly on the show. (He’s eight. Mickey’s Damn Clubhouse is aimed at pre-schoolers.)

“Are you kidding me—is he on train lines again?” Adrian asked, when Martin, Mickey-less, switched to perseverating instead on New York City subway lines. “That’s like behavior we haven’t seen since kindergarten.”

Oh but you remember that behavior now, do you?

Sorting It Out

I scheduled a call with Dr. C.

Before the call, I held a sort of pre-game with my friend Stacey, another biomed parent. It looks like die-off, I told her, and I’ve got to find a way to right the ship. When Martin was in self-contained special education, I could weather these seasonal dips—two steps forward, one flop onto your backside, that’s the whipsaw of recovery—because his school specialized in addressing behaviors: Martin’s a little off his game. Deal with it. But now he’s in general education, in our local public school. They don’t want to deal with behavioral setbacks. They’ll kick him out. (I fear.) And then where will we be? We’ve already held him back in second grade to make the transition to general education. I can’t return him to second-grade special education, and he will have missed too much of this year to be in third grade.

“So what’s your plan?” Stacey asked.

I think I’m going to tell Dr. C that we need to come off all the bartonella remedies, I said, at least until our December visit to her office.

Stacey said: “Let me ask you this: What if you take him off everything, and he does better? What will you do, leave him off his remedies?”

I think he will do better off his bartonella remedies. That’s why I want to do it, to halt the die-off. I wouldn’t eliminate the remedies forever, though. Bartonella is still an issue, as the die-off shows. No more remedies might return him to “baseline,” but there probably wouldn’t be more progress.

That was my pre-game: to explore taking Martin off bartonella fighters, temporarily.

Dr. C agreed die-off was at issue, and took Martin off A-Bart and CXVRM3-Micro, increased his support remedies like enula, and added pau d’arco to help with stress.

Martin’s bathroom emergencies stopped overnight. His behavior, on the other hand, held steady for a few days then declined further still. He became anxious. “Mommy, are you angry?” he asked, constantly. That’s something I say to him occasionally, when he’s not grasping my cues: “I am angry,” as in, “Martin, bunny-hopping down the hall an hour after bedtime is not funny. I am angry.” Now my occasional anger morphed into a boogeyman lurking behind every interaction. “Martin, stop playing iPad and come to dinner.” “Are you angry? Mommy, are you angry at me?” “Get back in bed, Martin.” “Mommy, did you get angry? Are you still angry?” “How was school, Martin?” “Are you angry, Mommy?” Meanwhile, the perseveration rocketed to that level where Martin is physically unable to stop speaking. When we attended a weekend play date with his former classmates from self-contained special education, Martin didn’t look like the kid who’d transitioned to general education. He looked like the least engaged kid of the bunch.

I scheduled another call with Dr. C, on a Wednesday evening.

Nadir

That Wednesday, we hit a low point. Martin, who loves (but doesn’t always read) books, was excited for the book fair at school. Two days earlier, I’d helped set up the book fair and seen plenty that would catch Martin’s eye: colorful softcovers, cartoon-character pencils, big erasers, silly pointers. On Wednesday morning, I sent a signed, blank check and, to facilitate my own accounting, I scrawled “for books” on the check’s description line.

Apparently, whoever helped Martin at the book fair interpreted the “for books” descriptor to mean Martin could select only books—no pencils, erasers, bookmarks, pointers, gadgets, or toys. So while Martin’s classmates gleefully (I’m picturing this in my head) attacked the goodies, Martin was limited to books. According to the teacher’s later description, this circumstance sent Martin, who was already having a bad day, into a tailspin from which he was not able to recover.

The school has my mobile phone number. Would that someone had called me to ask whether Martin could buy only books. Argh.

Martin was with his nanny, Samara, after school that day, because Adrian was in South America and I had to work. I arrived home at 5:50 pm, to accommodate a 6:00 pm call with Dr. C. As soon as I entered the house, Martin began to cry. “Why did you say I could only buy books?” he asked, tears rolling. “Why wasn’t it okay for me to buy toys?” I needed a minute to surmise what had happened, and then realized it must have been what I wrote on the check. I brought Martin to the sofa, cuddled him on my lap, apologized, assured him I hadn’t meant to say he could buy only books, promised him a weekend trip to the toy store. I consoled him as best I could, then had to leave him, still sniffling, with Samara while I took the call with Dr. C.

That moment, Wednesday, 6:00 pm, was rock bottom.

“I can hear the frustration in your voice,” Dr. C said as I described the past two weeks: the perseveration, the constant questions about whether I was angry, the emotional instability.

I know we have ups and downs, I told her. I know that with progress come setbacks. But he’s in general education now. We have no safety net.

Dr. C was reassuring. Bartonella manifests in anxiety and compulsive behaviors. The A-Bart had been too strong a remedy, and Martin couldn’t handle the die-off. But plainly he needs something to keep the bartonella in check.

We agreed to add Active H2 and pantethine to help Martin’s current state, and to put him back on the MC-Bar II and Des-Bio bartonella kit that he’d tolerated well in the spring.

I felt better, like at least we knew what was going on.

After the call with Dr. C, Martin’s behaviorist came over. Darlene, the behaviorist, sees Martin at school and at home, and we had arranged this meeting the week before. I told her about Martin’s book-fair meltdown, about how poorly everything had been going, about the bartonella treatment, about my worries that he the school could seek his removal.

Like Dr. C, Darlene was reassuring. “You need to know,” she said, “that Martin is not the behavior problem in his classroom. There are kids with more behavior issues, and whose parents aren’t interested in doing anything about it.”

“Really?” I asked

“Yes.”

“What I need to hear is that the teacher and the aide like Martin—that they still want him in the class, and support him being there.”

“The teacher loves Martin. And the aide thanked me for recommending her to work with Martin.”

With that, I felt better still, like at least we weren’t on the verge of being kicked out of school. Darlene reviewed a new playground participation plan she’d been working on. She also recommended that I write a note to Martin’s teacher letting her know about the bartonella flare, and that we were taking action on that front.

Typically, I shy from discussing anything we do biomedically with a mainstream audience, lest we appear radical or weird. On this occasion, however, I felt that an explanation could buy some extra patience for Martin. As soon as Darlene left and Martin was asleep, I sat at the kitchen table and handwrote a two-page note to Martin’s teacher.

Reemergence, Nope

Meanwhile, I had to order the new remedies that Dr. C and I had agreed upon, and I hoped they would arrive on Friday. They didn’t. In an unfortunate coincidence, I had a concert to attend Friday night, and Saturday morning I left before dawn to retrieve a classmate from JFK airport and attend a luncheon at my law school. Adrian was still in South America, on family business, so Martin spent Thursday evening (when I work), Friday evening, and most of Saturday with Samara, whose text messages described abysmal behavior.

The taekwondo teacher wants to talk to you, she texted Saturday morning. He’s wondering if Martin is taking any drugs for his ADD.

Oh no! I texted back. (More on that in a later post.)

Sunday, after church—“He told me all about the presidents, like wow! He knows all about the presidents,” the Sunday school teacher reported—I took Martin to the City for a play date. He wanted to spend the afternoon riding subway after subway. His playmate, who is also currently fixated on train lines, was more than happy to oblige, so we rode subways all afternoon. On the way home, Martin had a meltdown. I don’t even remember why. I just remember the meltdown.

Monday evening, the new finally remedies arrived. I started Martin on the Active H2 and pantethine immediately, and Wednesday morning I added MC-Bar II, beginning with only two drops and working up from there. Wednesday, something went right. Around lunchtime, I received this email from his teacher:

Just wanted to write a quick email to say that Martin is having the BEST DAY! He is working cooperatively with his classmates on a math enrichment, took initiative to organize who was going to bring out the recess equipment, followed a web quest on the computer without any help, and followed every other direction given today with little or no prompting! We are very proud of him and wanted to let you know.

Was it a miraculous transformation? I wish. Thursday and Friday Martin was foggy again, and our weekend included another trip to ride MTA subways to and fro, and another meltdown. In fact, several meltdowns.

Breathing Deeply

By now a month has passed since we implemented the changes (have you noticed I haven’t been posting much?), and I regret to report that the situation has improved only marginally. The week before Thanksgiving, we had a pre-scheduled meeting with Martin’s school team, to discuss how his transition to a general-education classroom has been going. The teacher reported that Martin is having meltdowns about three times a week, whereas in September he had none.

Nevertheless, no one suggested that Martin doesn’t belong in the general-education classroom. Those present, in addition to the classroom teacher, included the speech therapist, OT, PT, resource room teacher, and school psychologist. The table was quite full.

At home, our family is being held hostage by Martin’s obsession with NYC trains/landmarks combined with his emotional fragility. His is constantly demanding to see my calendar and know whether we have any trips to the City planned, and if so, he wants to dictate which trains we will take and where. He becomes agitated and upset if his wishes aren’t met. Over Thanksgiving break, I planned a trip for us and four visiting relatives to a Manhattan Bierhall, to appease Martin. The logistics involved Martin traveling by train with one of my brothers, while I drove with another brother’s suitcases, because he was returning home that day. Martin got to eat a treat meal with potatoes and sausages. His response to our efforts? He melted down because he wanted to “ride subways and do something else in the City.”

I’ve been bouncing Martin’s enula and MC-Bar II doses, experimenting to see whether one of those remedies could be causing adverse effects. No luck.

This week I spoke again with Dr. C. I feel like I’ve morphed from the confident patient into the needy parent. We are not sure whether bartonella is at fault, or whether another culprit could be at work, such as mold in his new school. (Recall that much of the spiral has occurred, and intensified, upon his beginning school.) Dr. C advised that I try zeolite and CBD oil to control the situation until Martin’s appointment next week in her California office.

Readers, this is a trying time.

Still, I do have a silver lining: Martin is sleeping well. Which means I am sleeping well. Which means I can handle almost anything.

Cherry-Lime Soda

Posted on by findingmykid
7

Martin and I were in the car. He complained he was thirsty, so I offered him a sip of my cherry-lime kombucha “soda.”

Martin examined the label, then handed back the bottle and said, “I can’t drink soda. It has refined sugar.”

“It’s okay,” I said. “It’s not real soda. It’s kombucha.”

He took the bottle again, shook his head, and said, “It says ‘cherry-lime soda.’ I’m not having any.”

I’m telling that anecdote for two reasons. First, I have read about kids who police their own food, who attend birthday parties and turn down cake and pizza. I envied the parents who could trust their kids with food choices. Now it seems I have cultivated such a kid. Martin told me recently that an assistant teacher had tried to give him a “fruit snack”—one of those corn-syrup-and-artificial-color bombs disguised as a fruit product. “I said no!” he declared, with glee. “I said I can’t have that!” Evidently he found it funny that the offer had been made at all.

Second, “cherry-lime” is a cheap way to introduce my long-promised post about Lyme disease. (Get it? Lime-Lyme? What? You’d forgotten how I promised a post about Lyme?) Lyme disease is playing a major role in our lives right now. We are fighting Martin’s Lyme disease with antimicrobial herbs, which sound innocent but provoke reactions strong, and immediate, enough for me to trace them to particular doses. On days when I want Martin to perform—say, when he’s visiting a school or completing a neuropsychiatric evaluation—I withhold or delay antimicrobials, in an effort to “even out” his behavior. It’s all so—

You’ve been on my mind.

Let’s start at the beginning. Some time ago I received this text from my mother: “I am just catching up on your blog.”—hurrah!—“Martin seems to be getting treatment for Lyme disease a lot. Does he actually have it?” Fair question. Absent an acute infection or reaction, Lyme disease is notoriously hard to diagnose. Indeed, controversy surrounds Lyme diagnosis. Some doctors, especially Lyme-literate doctors, or “LLMD’s,” have been accused of profiting by over-diagnosis and treatment. Conversely, some commentators argue that Lyme disease is at epidemic levels, wildly under-diagnosed, and mistaken for myriad other ailments. Clinical practitioners, including Doctor William Lee Cowden, who has worked extensively with Lyme disease, report Lyme prevalence levels even greater than 50% in children who present with autism. Lyme disease is a controversial topic.

I spent my childhood in Upstate New York and now live in Downstate New York, two areas where Lyme disease is widespread. In 1993, while staying in a rural area outside Berlin, Germany, I found a tick embedded in my arm, a known transmission method for Lyme and related diseases. A distant uncle of mine was hospitalized repeatedly for Lyme-related illnesses; I have a friend who lost his sister to a manifestation of Lyme disease; and my child had autism. Lyme has been on my mind for a long time.

In November 2012, Martin showed positive for Borrelia burgdorferi, the causative agent of Lyme disease, in IgG/IgM ELISA testing,. That result was bolstered by evidence of protein bands on IgG and IgM Western Blot tests. Although Lyme disease testing is not entirely reliable, Martin’s integrative physician, whom I’ll call “Dr. S,” found the evidence strong enough to recommend an extended course of antimicrobials as treatment for Lyme disease. The antimicrobials certainly seemed to affect him. For example, Dr. S recommended that I increase takuna by a few drops per day over two weeks, until Martin reached a maximum dose of 30 drops twice per day. Instead of two weeks, it took three months to reach 30 drops twice per day, because Martin reacted so strongly to each increase: crazy laughter, hyperactivity, sleeplessness.

Not long thereafter, we switched physicians because Dr. S moved to California. The new doctor, after running her own testing, said she saw no evidence of lingering Lyme infection and took Martin off the antimicrobial protocol. At the time, I was not Lyme-informed enough to know that (1) takuna and other herbs driving Martin bonkers probably meant Lyme was present and being addressed, or (2) that treating Lyme this way requires a commitment much longer than the six months we’d done the protocol.

Round two, we won’t give up.

We spent two years with the doctor who took Martin off his first Lyme protocol. February 2015, we switched back to Dr. S (all the way in California!), who took a deep breath and started trying to deal with the many issues Martin presented at the moment; the continued Lyme possibility was on the list but not at the top.

July 2015, something bit Martin on his foot, and he developed what might, or might not, have been a bull’s-eye rash. Lyme shot back up the list. With Dr. S’s approval, I took Martin to visit an LLMD in New York. That doctor had us send a blood sample to Galaxy Diagnostics in North Carolina for a “Bartonella ePCR™ Single Blood Draw” test. (If you’ve ever been present for drawing blood from Martin, you’d understand why the “Triple-Draw” test wasn’t for us.) Galaxy cultured the sample in a proprietary “Bartonella alpha Proteobacteria Growth Medium” before subjecting it to Polymerase Chain Reaction (PCR) testing. (If you’d said any of this to me before I became a biomed parent, I would have rolled my eyes.) After several weeks, the culture came back positive. Martin’s blood sample grew bartonella, a co-infection to Lyme spirochete. (The ticks that transmit bartonella also transmit Lyme, and the co-infections can be transmitted in the same bite.) Galaxy’s was the best test we could find, evidently the most definitive, and we got our answer: If bartonella flourishes when Martin’s blood is cultured, then Martin has Lyme disease.

The New York LLMD’s protocol, in such circumstances, is to put the infected patient on an extended course of antibiotics. I objected, explaining that for Martin an extended course of antibiotics could be destructive. I believe that Martin’s autism originated, in part, when he was taken from me at birth, placed in a NICU, and pumped with intravenous antibiotics. Antibiotics can kill healthy gut bacteria and thereby weaken the immune system. We have worked for years to restore Martin’s gut health and digestive functioning; I don’t want antibiotics to risk or compromise that progress. The LLMD listened to my reasoning and asked for my permission to contact Dr. S to discuss a treatment protocol.

Martin is fortunate to have these doctors. The LLMD and Dr. S ended up coordinating a phone meeting to discuss treating Martin’s Lyme disease with more natural antimicrobials versus pharmaceutical antibiotics. (Some studies demonstrate that herbal antimicrobials, or an antimicrobial/antibiotic combination, can be equally effective to pharmaceutical antibiotics alone.) In the end, Dr. S’s position carried the day, and she and the LLMD agreed on a protocol utilizing tangarana, samento, and other natural antimicrobials.

We’ve been actively targeting Lyme disease again since last October. When Dr. S adds an antimicrobial to Martin’s protocol—she substitutes the varieties in and out, to prevent the Lyme from becoming resistant—we begin a process of building to the recommended dose, sometimes as slowly as adding two drops per week. Usually, I can track the effects: When the antimicrobial stirs up too much, Martin becomes hyperactive, irritable, and unfocussed, and we need to increase more slowly.

As with nearly all facets of recovery, we see slow, steady improvement as Martin’s Lyme disease resolves. For example, Martin is holding his longest-ever independent phone conversations with Adrian, and finally eking some progress in reading comprehension. We also have tough days. This spring was a season of meltdowns and oppositional behavior. Even now, Martin is doing a lot of opposite-talking. I’m never going to use my iPad again! Never! I don’t want any dessert! Take it away! I don’t want to ride my bicycle anymore! Throw it away! He is also asking questions just to contradict the response. Do I have hockey practice today? “Yes.” No! No! No, I do not have hockey practice today. He’s not sleeping well. He’s anxious. With patience, and as much composure as I can muster, we are muddling through.

We plan to pull back, for a few months, on treating Lyme aggressively, when Martin begins his new school. That adjustment will be tough enough without die-off behavior.

Sometimes, when when ROOS strikes, the length of Martin’s recovery feels overwhelming. His autism diagnosis is gone, but he still has such trouble with attending and maintaining attention, and he is goofy and immature. Lyme disease, parasites, and the ever-present threat of candida overgrowth—will we ever finally reach the end of these issues, or will my son’s health always be an issue to “manage”?

This is our new world, right? Chronic illness for everyone.

IMG_3464Martin in our pool. The lazy days of summer drag on.

IMG_3810Sunset over the docks in our little suburb. Bring on the autumn.

Body Integrity

Posted on by findingmykid
2

Martin’s Lyme treatment makes him sensory-seeking, and I am his target.

He grabs hold and squeezes—puts me in headlocks, wraps his arms around my waste, tugs my arms, hops onto my back and chokes me.

His hands are in my hair—pulling my ponytail, removing the elastic, dividing locks into temporary pigtails, transferring whatever is stuck between his fingers (say, peanut butter, or coconut shreds) to my scalp. I don’t have great hair to begin with. Now it’s a downright disaster.

He headbutts my back, my arms, my torso, even my head when he can. It hurts. Then he rolls his head against me, hard. Back and forth. Back and forth. It is winter, and the air is dry. Sometimes his hair shocks me.

He wipes his nose on me, regardless of whether it needs wiping. I prefer when it doesn’t.

He climbs into my and Adrian’s bed and attempts to burrow. Once he gets part of himself wedged under me, he starts to kick.

He stands atop my feet.

He sits next to me and puts his head in my lap. That is fine, until he starts trying to do a headstand. If I flip him upright, he climbs onto the back of the sofa. From there, he headbutts me. See details, above.

When he does these things, he clenches his jaw, as if he cannot get enough sensory input. Occasionally he raises his arm, tightens the muscles, looks scared and uncertain, and brings his hand down to hit me—not hard, not intentionally, more like a slowed-in-air tap, unable to stop himself. In return, I hug him tightly.

I love my son. I love having him near me. But this is getting old.

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(Martin, on the campus of Stanford University, last weekend. Only ten years till he applies for admission.)

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(Martin, rocking the spectrum at We Rock the Spectrum training facility in Berkeley, California. He rock-climbs much better when wearing sneakers. Also, I forgot to bring his Cal State Golden Bear sweatshirt, so he was wearing Stanford Cardinal red, in Berkeley. Faux pas!)

Moments

Posted on by findingmykid
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The moment in a ski lodge when your ASD son—whose Lyme-disease treatment has rendered him so hyperactive that your brother Eddie just had to eat half his dinner holding a squirming boy on his lap, to prevent that boy from ransacking the restaurant—hits the “Floor 1” button in the elevator, then turns directly to three adult men who’ve entered and inquires, “Are you also going to the first floor?”

The moment in the airport security line when your ASD son—whose Lyme-disease treatment has turned him so inside himself that he doesn’t always realize when you’ve started speaking to him—takes his trombone case off his shoulder and holds it proudly in front of him, hinting for the TSA officer to ask him about the instrument, and then answers her question with, “Yes, I am very good at playing the trombone. I even take lessons, every Friday.”

The moment in a Whole Foods Market café when your ASD son—whose Lyme-disease treatment has left him so anxious that he burst into sobs when he lost sight of you, momentarily, in a trampoline center—finds his way to the napkins and silverware, selects the right quantity of each, returns without delay, and sets the table, without being asked.

The moment in a restaurant when your ASD son—whose Lyme-disease treatment has made him so sensory-seeking that he continually puts you in tight headlocks, whenever he’s not trying to wipe his nose on your sleeve—lets you cut his roast chicken, then says, “Thanks! I was getting frustrated with that.”

The moment in the car, in Northern California, when your ASD son—whose Lyme-disease treatment is causing him to perseverate on marching bands and musical instruments, regardless of what conversation is actually happening—calls from the backseat, “I like Southern California better. Uncle Rudy lives there, it’s warmer, and it borders Mexico,” and follows up with, “Why do you say you like Northern California better, Mommy?”

The moment when the new neuropsychologist evaluating your ASD son—whose Lyme-disease treatment has made him so drunken-silly that he interrupted the neuropsychologist’s testing with a giggle fit, and later became infuriated with a challenging exercise and shut off her computer—tells you, “I definitely see issues here. I would say primarily ADHD, and secondarily speech processing delay,” and never once mentions the A word.

New Year!: We Got Up Late Because Martin Had a Tough Night

Posted on by findingmykid
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Happy New Year!

Adrian and I didn’t make it till midnight, New Year’s Eve. Didn’t even try. We were in bed by 9:00 pm, in a vacation house in Park City, Utah. On New Year’s Eve, our family (1) got up late because Martin had a tough night, (2) skied, (3) met one of Adrian’s colleagues for a drink, and (4) zipped by a Whole Foods Market. From each of those four activities gives me a heading for a “Martin right now” mini-essay. I’ll post them in four installments.

New Year! (1) We got up late because Martin had a tough night.

Martin is in treatment for Lyme disease. His LLMD wants to treat with antibiotics. His MAPS doctor, on the other hand, prefers to treat Lyme anti-microbially, which she says is as effective as antibiotics without the potential negative effects for gut bacteria. The LLMD and MAPS doctors have talked to each other. For now, the LLMD is letting the MAPS doctor “quarterback”—that’s the LLMD’s word, so catchy—Martin’s Lyme treatment, and we’re going with the anti-microbials.

I think they must be working, because while Martin’s cognitive and physical functioning are smooth, his adrenal levels seem maxed out. He is full of anxiety, looking for excuses to melt down. New Year’s Day, Adrian was listening to a Frank Sinatra song when Martin started crying because he remembered that the song was recorded before his parents were born. Honestly. Martin was playing a video game, heard the song, and burst into tears. The only reason he gave was the date that Frank Sinatra recorded “I’ve Got You Under My Skin,” and it took several minutes of comforting to soothe him. If that’s not adrenal stress, I don’t know what is.

Autism and even, to some extent, healing cause stress. Sometimes the process of getting better means that Martin’s body hardly knows itself, or what is coming next. The body can react by producing excess adrenal hormones, like dehydroepiandrosterone (DHEA) and cortisol. The hormones cause meltdowns. The overall stress diverts blood flow away from the gut, affecting nutrient absorption, which pressures the pancreas to keep up with digestive enzymes. The stress also stimulates the liver to increase glucose production to feed the muscles—and I think you know what mayhem excess glucose can wreck in an ASD kid.

Martin is also exhibiting increased OCD symptoms, which for him accompany adrenal stress. His current obsession is making sure he sees a digital clock anytime the digits are all the same, i.e., at 1:11, 2:22, 3:33, 4:44, 5:55, and 11:11.

These factors—adrenal stress and compulsions—have affected Martin’s sleep, too. In “Curse the Night,” I described how Martin couldn’t sleep Christmas Eve because of his anxiety that Santa Claus might not come. In the night between December 30 and New Year’s Eve, Martin woke from a nightmare: I think it was about skiing (see next post), because he woke exclaiming, “No, no, not so fast!” He stayed awake from 2:30 am until after 5:00 am, declaring himself simply unable to sleep, asking for me to be with him, and worrying about the time—“It’s 3:12! It’s not 3:33 yet!”—until finally I hid the clock.

Night waking has been so rare this past year that nowadays it really throws me for a loop. I just don’t have the stamina to get by without sleep anymore. I dozed off, lying on the sofa, until Adrian’s alarm sounded at 6:00 am, our usual waking time for skiing. Then I told Adrian that Martin had been up for hours and was now asleep, set my alarm for 8:00 am to call his ski instructors and say he’d be late for his 9:00 am lesson, and crawled back into bed for a couple hours. We let Martin sleep until after 9:00 am, then ate a big breakfast and finally reached his lesson at 11:00 am.

Martin remained high-strung all day, and does still as of this writing.

(I will provide more information on the Lyme disease in a subsequent post. I am almost as excited about writing that as I was for the recent informative post about mitochondrial support.)

I Promised an Informative Post About Mitochondrial Support. Sigh

Posted on by findingmykid
4

I tell myself often that I should be writing less about Martin’s breakthrough performances and more about the process of biomedical recovery and homeopathy: what his blood and urine test results show, which supplements we’re using, how antimicrobials are affecting chronic Lyme disease, how I’m tweaking his diet and why.

Recall the correspondence I had with Martin’s biomed doctor about the hyperactivity Martin was experiencing. I guessed that the culprit might be a yeast resurgence. The doctor thought we were too quickly increasing borrelogen and banderol—hose are antimicrobial herbs we use treat Lyme disease and bartonella, a common Lyme co-infection—without enough time for Martin’s body to adjust. She suggested that we go off banderol temporarily, and that we build the borrelogen more slowly. Relevant to this post, she also wrote, “Please start the other mitochondrial support as we discussed, as the supplements should help not only ‘floppiness’ but also his ability to handle the anti-microbial herbs.” (She was responding with my terminology. I’m pretty sure that “floppiness” is not a real medical term.)

At the time, Martin had been off target mitochondrial support for a few weeks; we use MitoSpectra, and I was unhappy that our supply of pills had gone bad. I looked into MitoSynergy but decided against it, because its components did not seem to be in bioavailable form, e.g., it has standard B6 instead of p-5-p, and folic acid instead of 5-methyl folate or folinic. I also thought about giving Martin the mito-support elements separately: levocarnatine, CoQ10, B-complex. On the other hand, Martin takes so many pills and drops already. Where possible, it reduces the protocol burden to use combined forms, even if the combined forms tend to be more expensive. And blah blah blah. Meanwhile, Martin was off mito support while I mulled all this.

MitoSpectra’s customer support offered to replace the spoiled pills and told me to keep the next batch refrigerated to prevent them from going bad. After speaking with the biomed doctor, I decided to put Martin back on MitoSpectra. I expected that the mito support would improve Martin’s “floppiness.” I was less certain why the doctor thought that it would help with hyperactivity and overload from the antimicrobials.

It did. Immediately after speaking with the doctor, I took Martin off banderol and reduced borrelogan to just one drop, to start building again from there. That helped. Slight hyperactivity lingered, as did trouble falling asleep, and I worried about starting to build borrelogan again, however slowly. Then the new MitoSpectra arrived, and within a day Martin’s behavior leveled off.

Why? Even after five years of biomed, during which I’ve known that Martin has mito processing issues, I still don’t fully understand how the mitochondria fit into all aspects of Martin’s health. I associate Martin’s mito issues with his lack of energy and low muscle tone; in the earliest days, before biomed, Martin spent continuous hours lying on the floor, usually on his side, usually pushing a toy back and forth or engaging in some other repetitive behavior. We’ve remedied that, and made progress on floppiness and exhaustion. Yet mito issues continue sprinkling their special mischief over Martin’s progress.

Mitochondria organelles are the power plants of human cells. Their job is to turn oxygen and sugar into adenosine triphosphate (ATP), the energy that powers the cells to do their assigned jobs. Mitochondrial disorders, as I understand them, can be extraordinarily serious and can result in complications ranging from undergrowth and developmental delays to seizures. Conventional medical wisdom holds that mitochondrial disease, in the true form, is genetic and incurable, though treatable in ways that may assuage its effects.

According to the CDC, “More research is needed to find out how common it is for people to have autism and a mitochondrial disorder. Right now, it seems rare.” The CDC’s page, I note, has relatively little information about mitochondrial disorder, and much of that limited space is devoted to autism (and, you guessed it, vaccines). The CDC’s need to deny an autism-mitochondria connection makes me suspect that the question is being asked often, and a link in fact is suspected. TACA calls the role of mitochondrial function “[o]ne of the most exciting areas of research in autism spectrum disorder.” Even Autism Speaks (hardly cutting-edge science, in my opinion) offers: “Over the last decade, there has been great interest in the possibility that mitochondrial disorders may underlie some of the symptoms of autism spectrum disorder (ASD). Currently we believe that around 5 to 10 percent of children with autism have mitochondrial dysfunction as the underlying cause of their symptoms.”

Martin has mito dysfunction. That is diagnosed. No question there. So what is the mito dysfunction doing? Why would it cause increased hyperactivity when he’s dealing with antimicrobial Lyme treatment? Maybe cells without a power supply can’t fight the antimicrobial effects like they should. Maybe mito dysfunction keeps the entire system in such precariousness that what should be a mole hill—launching the battle against Lyme—morphs into a mountain. Maybe Martin, even after he functionally recovers, will still need mito support. Maybe he won’t.

The reason I shy from writing about the process of recovering Martin, instead of the victories and setbacks, is fear of admitting how little I understand about that process. (Also, it hardly makes for exciting writing.) I am a humanities-type mom wading through science-y stuff. When I try to write the science, I perceive my own shortcomings.

As of today, Martin is off banderol and rebuilding borrelogen slowly. The hyperactivity has dropped, considerably. Emotional dysregulation, on the other hand, is substantial. Martin is anxious, and having meltdowns.

Despite the mitochondrial support.

Because—who knows?

Of Snot and Spots

Posted on by findingmykid
8

Overcoming autism is like trying to escape an octopus’s clutch: Just when you feel free from one tentacle, another swoops in to take hold.

Martin had a terrific spring, and his digestion and health seem better than ever. Yeast has been under control for a year. Bowel movements are formed and firm. He sleeps. His height and weight are right where they’re supposed to be. His once-distended belly lies flat. We’ve wrested him from several tentacles.

Enter—allergies. At least, I think “allergies.”

Until recently, Martin has never had overt trouble with allergies. The first sign of a change was a few months ago, at a diner. (Martin ordered an Angus beef patty, no bun, and steamed broccoli. The catsup he ate was not organic. It was full of crap.) Midway through the meal, Martin started sneezing and rubbing his eyes. His face became red, his nose ran, his eyes puffed and watered. I had no idea what was going on. I did my best to dab at his eyes with a damp napkin and make him comfortable. The reaction faded as we drove home, 20 minutes later.

A couple months passed without another incident. Then, in July, he had three such reactions in one week: two when he got home after school (Martin attends summer school), and one over breakfast. I don’t know if something in our house might be bothering him, something that coincidentally was also at the diner. I did notice that, with all three reactions at home, he was drinking camel milk when the trouble started. Accordingly, I’ve suspended camel milk until we figure this out. No more reactions of that type—runny nose, puffy eyes—have occurred.

Meanwhile, however, red spots have appeared on Martin’s left temple. They showed up two or three weeks ago, faded, and reappeared more prominently this weekend. And they’re breeding: When the spots emerged a few weeks ago, they were four. This past weekend, they were seven on his face and one on the back of his neck. The spots are neither raised nor itchy. They are not bug bites.

Terrible photography. Sorry. He didn't want to be still.

Terrible photography. Sorry. He didn’t want to be still.

So what the hell are they? Allergies? To what? Are they the result of a Heilkunst clear? Our last clear was PCV7. The skin is the body’s largest drainage organ. Or are the spots from clearing something else? We’re working on Martin’s biofilm now, plus the possibility (awaiting test results) of chronic Lyme, both of which involve antimicrobial drops. Is his body responding with spotty face?

Also happening nowadays: Martin’s ears hurt, and he’s coughing at night. His emotional regulation is terrible. He seems out of it. Where do those facts fit in the puzzle?

I’ve scheduled new allergy testing with Martin’s pediatrician, and I’m corresponding with our other practitioners, trying to figure this out, which leads to the biggest mystery of all: When exactly did I become qualified to make sense of such things?

I’ve never wanted to fight an octopus.