Monday, June 7, 2010

In the news

I know, it's been too long since my last post... We're now finished with antibiotics (at least for now) as of the end of December, and things are still stable. Xian's story has received some media attention lately, and I've got a chapter in a new edited Canadian Lyme book, Ending Denial. Here's the news article:
Hopefully, in publicizing her story we have the chance to help someone else -- as it was though another news story that I found out about tick borne illness.

Xian is doing pretty well -- what seems left for her is a weak immune system (she catches everything and gets much sicker than her sister or I do) and some perceptual and language issues. It's as if her 'sequencer' is not always working. She's still being followed by the child psychiatrist who helped her with the last 6 months of treatment, and who has really been onside as well as sharing Xian's story with the local group of psychiatrists. The pediatrician is now a 'believer' -- and hopefully will now continue to support whatever Xian needs.

We're nearly at the two year anniversary of when we were at the beginning of having some answers and some treatment. Seems like centuries ago. While I was given some hope at that point I don't think I really figured there was any chance of a truly full recovery. But here we are.... I still wonder what our future would have been had I not stumbled upon that article about Ed Sperling (the teenager who had neurological Lyme), and at the same time had a few people mention it via some Internet contacts. While our lives now are in the 'back to normal' realm, it still feels like the past three years are something out of an old twilight zone episode. Xian herself occasionally has small memories return -- this morning she was remembering something from her time in the child psychiatric ward, telling me about not being able to find her way to the cafeteria and being locked in a room by herself (in the time out room). These memories always seem rather dreamlike, and now her aim seems to be to unlock whatever puzzles they hold -- why weren't you with me then, Mom? Why was I in a place with a cafeteria? It's funny but this two years from the start of treatment seems to bring remembering for both of us, and some for her sister as well.

Monday, November 9, 2009

Breaking news!!!

I'm swamped in midterm grading, so no time for more than a quick post (except to say that Xian continues to do well and we're hoping to take a break or stop antibiotics permanently in December if all goes well).

The big news is that the Canadian investigative news program W-Five is airing a Lyme program. I was interviewed as part of the background of the story, but in the end they decided to focus on two teenagers -- Ed Sperling, the boy whose case lead us to Xian's diagnosis, and that of a teenage girl in Victoria, Nicole Bottle. Both had/have neurological Lyme disease, so quite close to Xian's story. I'm not sure if they will be using any of the info/documentation that I sent them, but they may, depending on what went onto the cutting room floor. Teenagers are more predictable interview subjects than six year old children, so I know it was a good move on their part (Xian would have been just as likely to talk about whatever entered her head than answering questions about Lyme disease, depending on the moment! Nicole sees the same Lyme specialist in Seattle who diagnosed Xian, and I think there will be a short segment filmed in the Seattle office. The producer, Richard O'Regan, is an Emmy award winner, so I have high hopes for the program.

Here's the message I received from Ed's mom:

"W5 and the Lyme show will run this Saturday at 7 pm. It will be rerun on Sunday at noon or one and it's also going online at "

I'm hoping they get a large number of viewers (and lots of response, as well) as we really need more publicity for the Lyme situation in Canada.

Hopefully those out of Canada will be able to see the on-line version when it airs -- I expect you can test that by checking out whatever last week's program was.

Now, to find my instruction manual for the VCR!

Saturday, July 11, 2009

Summer Update

Just a quick update. Xian's continuing to do well on her current medications, although her last blood work showed that she had a low neutrophil count. This is a sign of battling an infection and not unusual for Lyme patients, but means we need to be a bit more careful about avoiding exposure to viruses. The frustrating part is that no one from the pediatrician's office notified me about this -- it was the child psychiatrist who mentioned it and was concerned! She's now provided the blood requisitions. She has contacted the Lyme specialist in BC, Dr. Murakami, and seems more confident about being the treating doctor...and it sounds like she's tracking things more carefully than anyone has locally so far. She wants to see Xian having the blood tests every 2 to 4 weeks depending on the results of the one she has on Monday.

So, thankfully, we don't have to travel to Seattle this summer, and I am hoping that Xian may finish treatment without having to return to the US. We've been trying to get requisitions to have tick borne illness testing in Canada, for the coinfection tests that are available and something called the C6 peptide, which can show Lyme infections that originate from many different areas of the world...something that has been a bit of a question for Xian, given how sick she got after her probable exposure in 2007. I've recently seen a risk map for Asia, and both the area where she lived until adoption at 15.5 months, and the area we travelled to for Rachel's adoption early in 2007 are known to be high risk areas for Lyme and other tick borne illnesses. One of the theories I've heard is that the sickest Lyme patients may have had multiple exposures -- earlier infection may be kept in check by the immune system, but a later exposure pushes things over the edge. So, the C6 seems a fairly important test.

The pediatrician has said she can issue the coinfection tests that were recommended, but it has now been a month and no one at the Provincial Lab seems to be able to find out how to order the C6, although I am aware that the National Lab in Winnipeg will issue it...and even with multiple phone calls to inquire, nothing seems to be happening. I have to really wonder about this and the lack of any communication about it. Makes me believe that no one really wants us to find evidence that Xian has Lyme, since then they might actually be responsible for how sick she got when untreated. Hard not to be cynical...

However, I've recently found out that the California lab (IgeneX) where I am getting her tested again (this was the lab where she was tested just before her US diagnosis--so we have a baseline to compare to for those tests) also does the C6, and apparently sends the blood to the same lab in Boston that does the Canadian tests, so will just pay for it and get it done that way. (I've also heard some stories about Canadian Lyme patients who did get the C6 issued then having problems with the blood not being shipped in a timely manner, which affects the accuracy of the results.) They shouldn't be able to argue about the validity of the results if it's the same lab doing it. I also requested the "many Lyme tests" that the infectious diseases doctors told the psychiatrist were done, but funny thing, so one has yet passed anything I will be requesting Xian's full medical file and it will be interesting to see if there is anything there. While Xian was in hospital I did get test summaries and there wasn't anything passed on to me then. I've figured it's time to pull her full medical file, including the two weeks in child psychiatry -- just to see what they flag and don't pass along or 'lose'.

It has been recommended that Xian go off of all antibiotics for three weeks before testing, if she can manage that, so we will give it a try (and thus the urgency to get the requisitions soon -- don't want to be doing this at the start of grade one!). I've been told that a short medication break can also provide helpful information in regards to her current bacterial load and how much longer we may be looking at treatment. The three week break means that the forms of the Lyme bacteria that tend to go into 'hiding' in different forms deeper in the body will be more likely to convert back to the spirochete form, and, theoretically at least, more likely to show up in her blood. Hopefully the tests will provide some useful information.

Xian is continuing to make steady improvements in her memory and speech and in things like counting, writing etc., although she also has some fluctuations. One day she can write her name properly and the next she'll have it reversed or scrambled, though over all she's having more of the better days. She's been watching Nihao Kai-Lan -- a cartoon which teaches/uses some Chinese -- and interestingly she seems to recall numbers in Chinese better than she does in English...perhaps there are links to her 'old' knowledge of Chinese, in a different brain area, as even when she was very sick, she seemed to recall more Chinese vocabulary than I would have expected. She's also started having some memories return from when she was very sick -- which is an improvement, but a bit of a sad one since the memories tend not to be very good ones, or they are confusing images for her. She was asking the other day about sleeping on the leather couch -- last summer when it was hot and she had severe insomnia and was battling lots of bacterial die off with lots of strange brain symptoms we all camped out downstairs, with Xian on the leather couch because she was still going through severe night sweats, and too wild to sleep with Rachel on a little mattress or with me on the bigger couch. She also remembers Rachel and I being sad when she was sick and seems to be working hard to make sense of things, but has a pretty accurate version of events from what she's mentioned so far. A mother of a boy who had a similar case of neurolyme told me a while ago that she believed her son was more 'locked in' than unaware and that he had recounted things that had been taught in school lessons when he had been unable to communicate and severely ill. It does seem more and more that Xian was in the same state -- unable to communicate or control her actions, but seemingly more aware of surrounding events than anyone has expected.

Xian and Rachel have been in daycare for the summer and Xian seems to be calmer and happier than she has been all year -- and also back into the normal ups and downs of her friendships there, and also now able to report the finer details of what goes on during her day. They have a good and busy summer program with lots of young new and energetic temporary summer staff. People who have seen Xian recently, especially those who haven't seen her in a few months, all remark on how good she looks. It's really only when you look very carefully at particular areas when you notice how she is still affected, and those things are still showing improvements. With language, she has much better 'word finding' ability now and is not so frustrated. The main language issue is that her grammar is still a bit 'off' -- with things like word tenses or some word order issues a bit out of kilter still. She has been enjoying a lot of physical play -- doing yoga moves, imitating gymnastic moves she's seen older girls doing etc. She is very flexible and strong and quite proud that she can do things that other kids have a harder time with. Who knows she may be ready for a few classes in the fall, if we can find the right class.

I still find it hard to believe all that has happened to her (and us) in the past two still seems like some weird dream, especially when I keep running into strange struggles with the medical system, though thank goodness we've now got at least one person on Xian's side, and from what I have heard, her story is being talked about in the local medical community. Surely some doctors will have to wonder about her 'miraculous recovery' with treatment for Lyme disease when she was basically written off as an incurable case, not worth any further investigation.

Tuesday, June 9, 2009

Almost a year....

Since Xian began treatment. And now two years since Xian was likely bitten by her tick. Even with having lived through our journey, sometimes the past two years seems simply unbelievable. The part that seems the hardest to deal with is that even with the evidence of Xian’s continued recovery from severe, debilitating illness, doctors are still not willing to name what she had, and the infectious diseases doctors still stand in the way of anyone trying to treat her. As a person who works in research myself, I find it hard to understand that there’s no one, aside from the child psychiatrist and Xian’s educators, who seems particularly interested in finding out more about what she has been going through. Mostly they just seem to want us to go away quietly. (Hah, like that’s going to happen!)

We’ve had some very good developments in the past month. Xian’s medications were switched (to amoxicillin, ceftin, with tinidazole pulsed to bust the cyst form of Lyme) and within 6 hours of her first dose of amoxi, Xian was showing some distinct improvements. She did get really sick for the first week, which I thought was a drug side effect (and I was quite worried we’d have to switch medications again), but it appears to have been a Lyme ‘die off’ reaction. Within a few days the worst of the symptoms ended and she has just continued to get better, particularly in memory, speech, and cognitive symptoms. This morning she looked at herself in the mirror and said, “My eyes are sparkling!” – and it’s true, she even looks a whole lot better and much more like her ‘old self’ before illness. What’s also been interesting is that in the past couple of weeks she’s really been trying to write and draw a lot – things that she’d not been so keen about since she started to plateau a few months ago. Also showing a lot more curiosity about things and asking more detailed questions (beyond just “why?”) – sometimes connected to what she has been learning at school.

We did end up having some success in the appointment with Xian’s child psychiatrist – who has agreed to provide treatment at least temporarily. While it’s not really her area of expertise (antibiotics) she said she cannot argue with Xian’s progress. She also told me she has tried talking to the infectious diseases doctors, but they refuse to support further treatment, even while acknowledging Xian’s progress on antibiotics. The psychiatrist is hoping we can get the pediatrician back on track or at least doing some of the prescriptions, but we’ll see. I’m not going to be taking Xian back to Seattle this summer, and am going to push hard to get treatment happening in Canada, and to get her case finally recognized. Last week I sent a letter (including photos of Xian from health through illness to now) to our MP (member of parliament) and I am hoping that we’ll get some sort of support from her.

Over the past few days there have been quite a few Canadian Lyme disease stories, based on the recent article in the Canadian Medical Association Journal

Here’s one of the news reports, based on the report:

The report says that as of 2009 ALL confirmed and suspected Canadian Lyme cases should now be reported by physicians. So, I will be working on getting Xian’s case included in the numbers, though I am also anticipating that at least some of Xian’s doctors won’t want to include her case because that would also indicate some liability in terms of her medical treatment for a year. But, we’ll see….I figure it is worth a try, and as a fellow Lyme ‘mom’ said to me recently, “Remember, this is a long haul.”

Tuesday, April 21, 2009

Update for April

Things have been busy for me with end of term – the usual avalanche of assignments and grading to complete.

There have been a few developments in terms of our ongoing treatment battles. The Toronto Lyme specialist did turn down the referral as I figured might happen, as he didn’t believe he would be able to adequately monitor Xian’s treatment from a distance. He’s not accepted any of the other Alberta referrals, so it looks like at the moment he is only taking Ontario patients. He did make some treatment suggestions for a young man in Alberta, so am hoping this may happen for Xian (more on that later).

I provided an update to the retired BC Lyme specialist who has consulted (for free!) on Xian’s case. He made some testing suggestions – tests that should be done in Canada, as those results could help in better access to treatment (though not necessarily, as I have heard from others). He also said that Xian should be considered for a course of IV antibiotics, given the remaining cognitive issues. I’d mentioned that in the speech/language testing and the cognitive testing done by the educational psychologist, while Xian was showing areas where she has improved significantly, areas known to be linked to neuroborreliosis remain impacted – memory/focusing problems (e.g. Xian is unable to repeat/copy a complex sentence verbally, because she forgets all but the beginning), word finding problems, and a number of problems with executive function (known to be frontal lobe related).

Two weeks ago the child psychiatrist’s office called to see if I could come in the next day to meet with her. This turned out to be fairly positive. Dr. W. had contacted the pediatrician to get to the bottom of things. From what Dr. W. reported, it seemed like she did a good job of advocating for Xian – she asked the ped if she disagreed that the medications were working or didn’t believe Xian was getting better, and also asked what we were expected to do since Xian is not yet fully well. It sounds like the crux of the problem is that the pediatrician is concerned about not having any direction or much information in regards to Xian’s treatment. (While she told me via the nurse that she wasn’t willing to deal with Dr. Murakami – the BC Lyme specialist, or contact the doctor in Toronto for advice, it sounds like she was reconsidering that in her conversation with the psychiatrist.) The psychiatrist said she would contact the Toronto specialist herself and see if she could get any recommendations – and she seemed willing to contact Dr. Murakami, if needed, as well. I also told her that we’re at the point where we cannot keep going to Seattle – both financially and in terms of the difficulties it creates for work – especially if we continue not to receive reimbursement of any kind. So, while I’ll take Xian in a few weeks, it is mainly to keep the orals going until something is sorted out here---and I'm at the point where I'm willing to talk to whatever media or political representative I have to in order to get something happening. I’m hoping the Seattle doctor will have some idea whether there are other oral antibiotic options that might deal with the neuro issues – though I think the problems is getting something that adequately crosses the blood brain barrier.

We have an appointment with the child psychiatrist the week after we get back from Seattle – hopefully there will be some sort of plan, or at least some possibilities in terms of direction. Dr. W. also told me something interesting – she did have some contact with the pediatric infectious diseases folks and they apparently told her Xian had many Lyme tests. Well, I asked for copies of all the testing done when she was in hospital, and have seen copies of all requisitions afterwards, and I have not a single record of a Lyme test. So, unless there’s something someone hasn’t been telling me, it is an outright lie. I will be checking with hospital general records and with the pediatrician’s office to check on that, in any case. I have to wonder if they are really simply more interested in covering themselves than actually getting Xian well. In reflection, when I met with the ID doctor in November, rather than simply giving consent for the pediatrician to treat, what should have been done was to suggest some treatment options and possibly IV at that time. Dr. W. also seemed to believe that IV was a reasonable expectation in terms of clearing the last layers of symptoms – and she also noticed the executive function problems in terms of what Xian does even when she is in the psychiatrist's office.

Anyway…it seems that things can never be easy for Xian, even in spite of having a clear response to treatment thus far. It seems I will have to fight all the way to get her completely well. Xian is quite aware of how she is changed since getting sick. This morning when I was telling her again that the next thing she needed to do was to get her boots and coat on (she generally forgets the sequence of all tasks, every day and ends up wandering around aimlessly until reminded) she said, “Mom, it’s not on purpose. The bacteria makes me always forget things.” While I know she hopes she will get better, she seems more or less resigned to her new way of functioning.

Yesterday I heard a very good radio program on Lyme on NPR (U.S. – National Public Radio) on the Diane Rehm show. She was a very good moderator/interviewer and had the author of Cure Unknown (Pamela Weinstraub), a Lyme Literate doctor/researcher (Dr. Schor) and an IDSA doctor whose name I have forgotten.
Here is a link to where the program was archived:

I am expecting to see more in the area of Lyme in the news – with spring coming, the documentary Under Our Skin due to hit theatres, the movie Lymelife coming out (doesn’t address the controversies, but shows a family where Lyme is a factor), and the submissions for the review of the IDSA Lyme guideline, some of which will be public.

My only hope is that some of these things may come quickly enough to help Xian – in my nightmares I can see us continually dealing with inadequate treatment and relapse for years to come and Xian losing more and more of years of schooling and parts of her childhood and ending up with permanent brain damage from an inadequately treated infection. While she has come a long way since last summer, we are not at the end of this yet and it is difficult to see her struggle in ways she never did prior to getting sick. While you are not likely to see doctors stop part way through a surgery, leave things half done and sew the patient back up, it seems to be the typical way that Lyme treatment is addressed.

Sunday, March 22, 2009

Some good press

Someone on CanLyme posted this newscast on Lyme -- wish that there was more publicity like this, and maybe kids like Xian would get diagnosed and treated properly.

The medication that Xian's pediatrician was unwilling to prescribe (she provided half of what the Lyme specialist is wanting) has been working wonders. Xian did have a bad herxheimer reaction to it, which is what happens when Lyme spirochetes die off. The medication is supposed to get rid of the hard to eradicate cystic form, and I'm pretty sure that's what's been happening. Interestingly, after about two days on the tinidazole, Xian started complaining of aching joints and of pain in places that haven't been an issue before (knees, ankles, other joints), as well as having some return of pain, stiffness and 'heat' in her hands. She was extremely fatigued and having quite a rough go of it. She's on this medication for a week, then supposed to be off of it for the next week--and it took her part of that week to start to feel better. This week is her second pulse and what's been amazing is that suddenly she's making big cognitive leaps and returning to doing some things that we haven't seen in the year and a half since she got sick. She happened to have one of her speech assessments on Friday and the SLP said that she'd moved up from being overall slightly below average for her age to being well in the middle. This increase happened within the past couple of weeks and the only major difference is the new medication. The speech and language pathologist has done her homework on Lyme disease, and what she's noticing is that the remaining issues are all things that are know to be Lyme related cognitive issues: word finding and memory of sequences. So, there's both evidence of the medication working and evidence that Lyme is still involved in speech issues.

No word from the pediatrician's office about a referral, so I suspect we don't have one. Sure would be nice to have someone actually let us know so I can figure out what we do next. I'll be calling them next week to pass on the message to the pediatrician about the medication and begging for the refill that Xian is supposed to have. If she won't do it, I guess it's either a trip across the border or seeing if we can get it through one of the on-line pharmacies (which is what the Lyme doctor said some of her patients end up doing). Will also inform the psychiatrist, maybe she'll help---though there was no response with our last email. So incredibly frustrating to see Xian responding to what's been suggested by the Lyme specialist and then run into all these roadblocks. I just have to shake my head.

Rachel's been sick with a bad flu the past week. High fever for three days that wouldn't go down so took her in to see the doctor (unfortunately we didn't get ours, or I'd have been able to do some of the work required for Xian). Rachel was complaining of stomach pain and on examination was reacting to having her tummy touched so we were sent on to the ER to go for an ultrasound....but of course, with the high fever they also decided to check out pretty much everything else. As it all turned out it seems just to be a virus, and the fever now is mostly gone aside from some spikes. What a difference, though, taking Rachel in---everything being attended to seriously, doctors talking to me like I was a reasonable human being. The complete opposite of every hospital experience with Xian, where her symptoms were dismissed and I was generally treated like a crazy parent. Anyway, thankfully, Xian isn't showing any flu signs, and this week is feeling great. She's woken up a few days and commented, "My body doesn't hurt ANYWHERE!" Makes me realize that she's probably been dealing with at least some level of constant discomfort---especially on those days she seems irritable without any reason to be. Both school and daycare have commented this week that Xian's choosing to play interactively with other children (and even 'lead' activities--this was 'who she used to be!') rather than isolating herself. One of the things I've seen is that her observational abilities are back -- in the past she would always be the one to notice a 'difference', such as if someone we knew got their hair cut or new glasses. She stopped doing that over a year and a half ago as the 'fog' crept in. This week she noticed one of the daycare worker's haircuts (I hadn't noticed, and she said Xian was the only person to comment) and she also grilled one of the kindergarten parents about why she was accompanying a different child (they are carpooling with a neighbour). Xian gave her the third degree, asking if they were "connected" (I think she meant 'related'?). In the time she's been in kindergarten it's been rare to see her speak to a parent or any adult other than her teachers and child care worker, but now she is noticing the outside world again.

With the last improvements I can see that we're probably nearing the end of the long tunnel. The hard part will be ensuring that Xian can get treatment until we're at the point where she's less likely to relapse. Hoping that somehow we can catch a break in that respect.

Sunday, March 15, 2009

Lyme in the Media

Lyme has been in the news lately -- though unfortunately due to tragic reasons, a case where there was a shooting and the shooter is reported to have neurological Lyme:
What's been interesting is tracking how often the Infectious Diseases Society of America (IDSA) keeps being quoted (and offering interviews) to deny that Lyme could produce severe neuro psychiatric symptoms. Well, having lived with Xian through the worst of her neurological issues, to me it doesn't seem implausible. The denials from the IDSA camp seem to be of the "they doth protest too much" variety.

Whether it's related at all, the producers of Under Our Skin have sent releases to Lyme organizations mentioning this:

On The Marc Media Update_*: *UNDER OUR SKIN, *the documentary that
investigates the untold truth of Lyme disease,* * will be featured on
"The Doctors", a nationally syndicated TV show, taped in LA.

They are asking for people to submit questions about Lyme disease for their panel of
doctors to talk about on the show. They also want to hear your stories.
Please ask them to do an entire show, not just a segment on UNDER OUR
SKIN and the seriousness of Lyme disease. If you have not seen
the show - check your local listings. It's syndicated so it is on
different times and different channels depending on where you live.
Please spread the word and ask people to write in. The taping is next
week so there is not much time. Thanks again for your support. Here
is the link: *http://tinyurl. com/arhjpg


I really hope that the show presents a balanced perspective and includes stories that might help people before the point that Xian had to get to.

Things don't look too optimistic for the Toronto Lyme specialist referral. The other Alberta family was unable to get an appointment for their son, and the reason was because he was out of province. So, now wondering about how we'll get Xian's treatment to the point where she's fully well and unlikely to relapse. It seems the alternative is a lot more time spent in Seattle and a lot more money spent on meds out of pocket. It's too bad Edmonton isn't a border town, as at least that aspect would be easier. Quite a few of the Vancouver Island and Vancouver folks get their medications in Bellingham when they can't get Canadian doctors to support treatment. Have been hearing some 'buzz' about a class action suit that some Vancouver Island parents are spearheading (their daughter has been in Connecticut for months, getting treated after being dismissed in BC -- here's a link to her story:

Unfortunately, to this point it seems that nothing else has made much of a difference and when kids like Xian who are responding to treatment in ways that are nothing short of miraculous have no guarantees of treatment to the point of full recovery, I start to think that legal action is maybe the only way, sadly.

Feeling rather grumpy about our recent issues with the pediatrician, especially when the medication being pulsed (and which we can only get half of what the Lyme doctor wanted) does seem to be getting rid of some symptoms. I know if Xian had TB or cancer she'd get more than adequate care, but because it's Lyme (and no doctor will even name it that) the only way she will get barely adequate treatment is for me to continue to fight for her. And what will happen to the other kiddos who are unlucky enought to meet up with a tick this spring? Sighhhhhhh