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

Wednesday, March 4, 2009

Referral, maybe?

Thought I'd update. After playing telephone tag with the nurse in the pediatrician's office I managed to have a couple of conversations with her yesterday. While we can't get an appointment sooner (Xian's next one is not until early June), the pediatrician has agreed to a referral to the Toronto Infectious Diseases doctor. He's currently one of very very few doctors openly treating Lyme disease, including some pediatric cases.

I'd asked for a referral way back in early September and was told she'd do it only if we didn't have any luck with Alberta infectious disease -- I guess the new pediatric guidelines would be a strong confirmation of that. Hoping that we can get the referral soon, or at least in a month or two.

We've also had some great support from the CanLyme people, who've used our recent turn of events to begin a letter writing campaign regarding the new pediatric guidelines. The response that they received from Harvey Artsob who runs the Canadian National Infectious Diseases Lab was very supportive. (The Lab has moved along in recognition of the disease.) CanLyme is also trying to get a letter writing campaign going to MPs and MLAs. Of course it is not all for Xian, but her story reminds everyone that no child has any guarantee to diagnosis, treatment, and recovery from Lyme disease in Canada as things stand.

The good part about a referral to the Toronto doctor is that it would probably mean I'd be able to claim our medical expenses and get some reimbursement, which is not possible in terms of the "unrecognized" Seattle treatment. At this point, with Xian's doctor's refusal to represcribe one of the medications, we'd now have to stay in Seattle longer in order to get it compounded there---it's not something the pharmacies usually have on hand. (Today I'm picking up the one prescription the doctor agreed to here -- and even with a really good compounding pharmacy, it has been a five day process.)

The teacher and director of Xian's school, who are of course aware of how Xian has progressed and how ill she was still in September, now seem to have a very good understanding of the h**ll we go through in terms of getting treatment, any official recognition, and any services for her. Thankfully, the director was a former high level education ministry office and has been able to strong arm a few things---I've been asking for a speech and language assessment since early fall and it looks like that is going to happen. I've been recently thinking about school placements for next year---there could be some options that would be more convenient in terms of child care etc., but I am now thinking that with the school so much on our side, it would be a shame to have to start new. In our situation, having someone who actually 'gets it' and who can make some things happen for Xian is a resource that we need to hang on to. Xian's also going to have some repeat cognitive testing at the Glenrose Rehab hospital---the ed psychologist who is there is also very much onside (and she's from Manitoba and knows that Lyme is growing in Canada).

So...hopefully our crisis will be averted, which helps. It's been a couple of rough weeks for us generally---Rachel's had a bad cold (and I'm hoping won't end up with her usual eye and sinus infections if we can avoid it), I'm succumbing to one, and Xian has been not feeling very well herself over the past week. Not sure if she's also fighting the cold or if it's Lyme related, though I suspect the latter as she's had her weird skin rashes return and she's been complaining of more muscle pain. This morning she said her chest was sore, so will keep a close eye on that one. And of course I'm in the post-midterm madness of exams to grade and the end of semester to get through---always a little insane even when I didn't have any children!

Oh, and if you have time --- the discussion on the Oprah forum now includes over 900 posts. Many stories not that different from ours.
There was a message sent out to send a message to Oprah's link to requesting a show/being a guest -- so I did, including a link to Xian's blog, if they want more details. (And I mentioned all the horrific video I have of when Xian used to have hallucinations and screaming episodes, laughing fits, and catatonic episodes. Not that those are something I would really want to share with the world, but I figure if it means something changes and other kids avoid suffering, it would be worth it.)

Not sure if anyone here watches Little People, Big World -- I had insomnia the other night and happened to turn it on, only to see the family joking about a tick on one of the kids. They burned it, squashed it, and then squeezed it off leaving the head embedded before one of the kids picked it out. Of course, that's exactly what NOT to do if a tick is infected with Lyme -- they would have pretty much guaranteed infection. I know some folks are writing to the producers -- hopefully someone will get the message and hopefully someone will get that poor kid on antibiotics now.

Sunday, March 1, 2009

Trying to get public awareness...

I'm not really sure how many people are following Xian's blog at this point, but thought that it wouldn't hurt to post something here. Anyone who knows our story is aware of the devastation that Lyme disease brings, and our recent events as posted in the previous post indicate that there's still huge problems in terms of maintaining treatment. Here's what's been posted recently on a number of Lyme groups, including CanLyme---the group that's provided a lot for us in terms of support. I expect that the numbers count, so even just a line of support would help. Many adult Lyme sufferers are simply too ill to sit at a computer and there's some concern that there won't be the needed response. The stories listed on the comments pages are pretty tragic and there are more than a few that mirror Xian's story. Feel free to pass along this message---people need to know about this disease as it continues to spread, so that treatment can be pursued at the beginning, when treatment is much easier.


Oprah is deciding whether to do a show on Lyme THIS WEEK, and we need to fill her comment board ASAP. According to the show producer, emails directly to Oprah will NOT be read; you need to post here:

Having Oprah feature Lyme will help the new bill in Congress and it will pressure the new IDSA panel to do the right thing.

Note that there is a 200 word limit. The important thing is that you post a paragraph or two about your personal story, not how long it is.

Can we please ask you to post again asking Dr. Oz and Oprah to do a show on UNDER OUR SKIN, the documentary that exposes the truth about Lyme disease?? (There are only 129 posts up there now.)

Here is how:
Here is the link where you can post a message - if you are already a member of Oprah's community.

If you are not a member of the Oprah community, you will need to sign up first:
click on this link to sign up:

Once you have filled out the appropriate info -- easy stuff, name, username, email address, birth year -- then you will get an email to your email address: You'll get an email from Oprah's web people sending you an activation link that you will need to click on in order to get started. Then you can click on the above link and post your comments.

It sounds harder than it is, if you haven't done it before.
Thanks so much for your efforts.

Under Our Skin


If you haven't seen it -- Under Our Skin is a documentary on Lyme disease (if you search for it on Youtube you can find some of the trailers). It's now being show at some film festivals and will go to the theatres later in the spring.

My mom figures that Xian would make a good Oprah guest. And I'm now at the point where I say "whatever it takes" -- but something needs to be done. We're still living in a weird twilight zone where no one will speak those words (she has Lyme disease) and I'm made to feel like a crazy woman for trying to get the treatment and services that Xian needs.