What follows was written by Val, the mother of the patient I mentioned in the last blog. I am posting it, at risk of being criticized for self-promoting, because it says some very important things about how to get better. That doesn’t mean you have to come see me. Everything I am doing is public information, simple and safe. I want to thank K from the bottom of my heart for her generosity in sharing her experiences. Here’s Val…
Well, I’m the Mom of the young patient Jamie just treated for the month-long intensive. I’ve been intending to blog about “treatment with Dr. Jamie” since we flew to Hawaii last September to see her, but now I’m feeling an urgency to share the experiences, and I have my daughter’s permission to talk about all of it.
Before I go into the details, the most important thing I want to say here is that if you have a child or young adult with the MEICC or fibromyalgia or OI/POTs diagnostic symptoms, don’t mess around with your GP or family/primary care doc or even the docs you find who at least “believe” this isn’t psychiatric. Go see Jamie or find a doc who will work with her, if you can possibly afford it. Her shit works. We don’t know if it can stave off the worst of the debilitation that this disease devolves into, but if she’d been able to practice and I’d had sense enough to get my daughter to Hawaii to see her 10 years ago when she first got sick, I strongly believe my daughter would have been saved from years of misery. And, in the end, we certainly paid more on useless Dr.s, treatments and supplements during that 10 years of fruitless searching than we would ever have paid if we could have just gone to see Jamie in the first place. That’s my main message. The rest is details.
My daughter, K, had symptoms from birth. She had major colic that prevented her from sleeping for more than 2 hours at a time from birth to about age 4. Constipation was a huge issue, including fissures from age 4 onward. No celiac, no detectable allergies, no Crone’s diagnosis, just on-going poop misery. Sleep has always been impossible. In kindergarten, she was diagnosed as having ADD without the HD. Tutoring taught her to read during first grade and she’s always tested ‘way above average on scholastic aptitude tests since, accompanied by – lol – Harvard-level grades and excessive success on other achievement measures, blah blah, until she started getting really sick in middle school. (For those who aren’t ME/CFS-knowledgeable, high achievement used to be a hallmark “symptom” that was seen as contributing to the psychiatric evolution of this “stress-related” disease.)
At age 10, she needed an emergency appendectomy. The surgeon was drunk and didn’t close the one artery that feeds the area. Consequently, she needed another emergency surgery about 8 hours later as well as a massive blood transfusion from stranger blood. Who knows what was in it, right?
She recovered from the surgery, but suddenly developed migraines out of nowhere 1.5 years later, about the time of the onset of puberty. And I should also mention that we put all our kids through the remainder of the “required” vaccine regimen we’d avoided until then, when she was about 12 years old.
Migraines and dizziness started at age 12. At 13, the migraines were bad enough that she started missing a lot of school. By the end of 8th grade US, she’d developed a “status migrainus” that lasted for over a month (with total misery, puking, etc.) and which wasn’t touched by any existing migraine meds, amitriptyline, or any other meds except tramadol injections. Our PCP finally decided to admit her to the hospital at the end of 8th grade to monitor her while he administered ergotamine, an old-fashioned migraine med with potentially scary side effects, for 3 days and other meds (including morphine), and that finally kicked it.
She was OK over the summer and into the next school year. But at the end of October, she developed horrible pain in her neck and upper back, as well as more dizziness and continuing migraines, and OI symptoms, too. Our doc finally diagnosed her with “fibromyalgia.”
She just got worse from there. It was as if this disease systematically attacked every bodily system in succession. There may be a consistent order to the progression, but I’m not aware that anyone has studied and documented it. She learned to avoid the migraines, but the pain became ascendant, which continues to the present. Her gastro symptoms got much worse and she gained 40 pounds for no reason, then developed intractable nausea and lost 60 pounds for no reason. All of her hormones went out of whack. Hypothyroid, no androgens, no DHEA, blah blah. Total fail on blood pressure regulation, totally frightening unpredictable fainting events. And then the cognitive symptoms arose and she stopped being able to get online to do college courses, let alone for social reasons. I’m sure I’m forgetting some symptoms that went haywire, too, but these were the worst. She’d become completely bedbound by age 18, but by about age 22-23, she was also completely unable to even handle computer time.
We saw many, many docs and alternative-type healers. About age 17, she bailed out on the alternative types and said she wouldn’t try any further treatments that weren’t documented in at least one peer-reviewed paper published in a mainstream journal. (I kinda don’t blame her. She had a jello cake for her 16th birthday while she was doing the low-carb diet.) She liked acupuncture for the pain, but the analgesic effects only lasted a few hours.
So, we succumbed to mainstream medicine and she ended up with 8 daily meds and some 20 others for “as needed” symptoms. This stabilized her, but at what a miserable level. She had no brain, no energy, still had massive pain, and still no hope. Like everyone else, we were watching the HGRV research closely, as well as Jamie’s and Ali’s progress on the ARVs, but weren’t committed to this hypothesis until we saw more evidence. It’s still the causal hypothesis that makes the most sense to me, and there are MAJOR clinical reasons to go there, but we just weren’t there yet.
What pushed us over the edge to make the investment in going to see Jamie in Hawaii was a stupid cow of a nurse in our pain-management’s doc’s practice here in DC. We’d moved K’s care from our small town doc in PA to a pain-management specialist in DC a few years ago. We’d agreed with our PCP up in PA to try long-acting opiates to control the pain about the time K was 17 and we were otherwise trying to see if she could live alone with a nurse’s aide for about 5 years. But it turned out that she just needed much more care than an aide could provide, so she moved here to DC, where I work during the week, to live with me about 3 years ago.
The doc down here in DC had newer ideas than our PCP up in PA, but all his tricks also stopped working and he wanted K to go up on her opiate doses, which she already knew was a path to nowhere. We somehow ended up in his office talking to his nurse, instead of him. She was new to a pain practice, had attended a 1-day seminar on drug abuse, and absolutely flipped out about all the different meds K was prescribed. All by herself, this nurse decided that their practice couldn’t continue prescribing for K unless she saw a psychiatrist specializing in ADDICTIONS, because, obviously, my daughter is a drug-seeking junkie dope fiend trying to manipulate their practice into what? Giving her enough drugs to sell on the street? Which we’ve obviously been doing for the past 10 years, right? And then, when we met with the doc, he went on and on about how special K’s case is, how we shouldn’t have ever seen his nurse (umm, why didn’t his office staff know this?), how grateful we should be that he’d deal with K’s many and complex needs (like that’s our fault, right?), and he never once apologized for the massive insults to our integrity that his ignorant cow nurse inflicted on both of us.
I was beside myself with panic and fury. The last thing K needed was to see an addiction PSYCHIATRIST, who knew nothing about ME/CFS/FM except probably the crap that the CDC publishes on their website, would try to make HER responsible for her disease again, chalk it all up to drug addiction, and otherwise visit another set of attacks on her self-esteem with no path forward to getting better. I emailed Jamie because I already knew her as another Mom of a kid with this disease who I knew had gone through similar insults and stupidity. And when we talked (bless her, her immediate friend response was “call me”), it was just obvious that she was in a place to take on K, including all the drug-fiend complications, and might have wild new ideas, based in research, that seemed to be working for her and Ali and could maybe work for K.
As my facebook friends know, K and I flew to Hawaii to see Jamie last September. It was a HUGE effort for K and she was a mess because of it. But before Jamie did any kind of treatment, just getting together with her and talking over all the crap we’d been through was healing in itself. I loved it that I didn’t have to explain anything we’d tried. Jamie already knew about all of them and just nodded. K loved it because Jamie treated her just like I do – with the tenderness and care of a Mom – but with the massively more important set of skills of a Dr. , and, amazingly, one who knows how much a random touch can hurt, let alone standing up against a wall for 5 minutes. As we all know from her blog, Jamie is a firebrand on our behalf, god bless her! But, in person with a patient, she couldn’t possibly be more gentle, nurturing and sweet, let alone smart.
So, she changed K’s meds all around and is still in hot pursuit of treating K’s hormones. One of the most effective things she did was prescribe the high-flow oxygen. Since K started using it, her pain levels have decreased and she’s just stopped fainting. Once we finally got it together to have the oxygen tanks delivered here in Nov or so (it took a while to deal with my insurance), K has fainted only a couple of times, rather than the 3-4 or more times/week previously. And her overall pain levels are massively down.
Jamie also encouraged us to believe K’s personal experience that the opiates had simply lost their effectiveness. We all discussed what K’s Dr. here was saying, which was that she could go up in her dose levels for immediate pain relief, but agreed that it would only work for a while until she built up a tolerance to the new dose level. Jamie said K could go off the opiates and not feel any more pain than currently, but would achieve the secondary gains of not being labeled as a dope fiend and not having to worry about withdrawal if something happened that she couldn’t get her patches or pills for any reason. So, K started slowly weaning herself off the opiates after that Sept visit and it turned out Jamie was right – the pain was the same, the high-flow oxygen helped it as well as the OI/POTS symptoms, and…on the very positive side, we all rediscovered K’s massive brain.
Jamie also took her off Lexapro and got her started on Deplin last fall for depression. Last year (winter of 2010), K was a hopeless emotional mess. Some of you on MECFSforums know how scared I was about how depressed and borderline suicidal she was feeling. The combination of Jamie, the pain-relieving, anti-fainting and brain-improving effects of the oxygen, and the Deplin have absolutely turned the mood problem around. Since Sept, as every month went by, K laughed more, talked more, read more current events, and has absolutely recovered her passion for politics. She was once going to become a lawyer and run for political office…
The Month in Hawaii
The main purpose of spending the past month in Hawaii was to get K off as many of her current meds as possible. Jamie wanted her to be in the hyperbaric chamber and do neurofeedback, on top of the continuing high-flow oxygen, while she detoxed. It just really worked. Getting off that damned pain patch turned out to be nothing – 2 days of mild discomfort. And K was able to cut her daily oxycodone pain pills down by 2/3rds and completely dumped one of the benzodiazepines she’d been using for sleep.
We all got overconfident because this was going so well and K decided to stop her Lyrica cold-turkey. Considering it’s supposedly non-habit-forming and others have done well stopping it cold, we expected she’d be fine. Wrong. She was miserable and it taught us, as getting off the opiates had, that Rome was neither built nor fell in a day and we had to deal with this one slowly, too. Once she re-started it, she was again great, so the lesson learned is that K needs to go off it as slowly as she went down on her opiate doses. And now she’s doing fine with the smaller dose decreases every few weeks instead.
But, get this – while K was dropping meds and doses left and right, and should have been miserable, she was doing unbelievably well. I think we only cancelled 2 appointments over the entire month because she was feeling too bad to go vs. the 3-4 re-schedules we’ve often had to do for Dr. and dentist and other appointments over the past 10 years. And, other re-schedules were simply because K wanted a day at the beach instead of sweating it out in the hyperbaric chamber (it gets really hot in there) and we all agreed sun and water would be more healing. For a bedbound person, it was astounding to see her snorkel and swim with such joy, go out for dinner, watch her chasing scary bugs around the place we were staying, talk and laugh and engage, and overall enjoy life in a way we haven’t seen and she hasn’t experienced in years and years.
We travelled 16 hours to get back to DC last night. It was awful for all of us. K isn’t doing cartwheels today, but she’s also not curled up in PENE fetal position. In fact, she’s voraciously catching up on all the political TV coverage we couldn’t watch in Hawaii.
Hell, we don’t know. I’m pretty sure that if we only stopped here with oxygen, hyperbaric and Deplin, all these gains would fade over the next 2 years. Jamie has more tricks up her sleeve to get K’s hormones normalized, work on her blood sugar, and fine-tune this and that. And those things will surely lead to more progress.
But, what’s the disease-causing mechanism we’re fighting here? The treatments so far are basic healthcare and tweaks based on Jamie’s clinical intuition (oh, gee, we get dizzy and have pain – maybe our tissues aren’t getting enough oxygen!). But Jamie and Ali are continuing to improve on ARVs. Dr. Snyderman’s results are also incredible. If K continues to improve and stabilizes at a better level than she’s experienced since she first started getting sick, is there any reason to NOT try ARVs? I don’t think so. Jamie isn’t talking about this, but I am. Stay tuned.
And, in the meantime, parents, get your sick kids to Hawaii immediately. Do what Jamie offers now – it could make the difference between graduating from high school or college vs. having to do all that delayed or not at all. Save your sick kids some misery. The benefits may not last. We’ll see. But, these have been the ONLY treatments over the past 13 years that have had any clear, unequivocal positive results. Seriously, if you can’t get to Hawaii, get your Dr. to read her blog, join the forum, and consult with her. If only she’d been in practice when K began getting so sick…