I am in no way suggesting by posting this that what has worked for K works for everyone. However, the treatments we have used are very low risk and non-invasive. In my opinion, supervised trials of these safe, gentle therapies should be widely available to ME/CFS patients. Val’s account of K’s remarkable progress contains many clues about how to improve. The credit is all K’s. She did the work. I am so proud of her for taking control of her health and finding her own path to wellerness. She is a most remarkable young woman. Now, for some good news from Val. (Here is the link to her original guest blog in March 2012: Seeing Jamie.)
It’s been just over a year since I first posted here about my daughter’s (K) experiences with Dr. Jamie’s treatment, so I wanted to do an update to share the really fabulous news about K’s progress. In preparation, I’ve been re-reading old posts and correspondence, and it’s sure been a lesson in how effective our minds can be at suppressing bad memories — at least the memories that don’t generate PTSD — although some of those 3 a.m. trips to the ER had the potential.
K has continued to improve beyond our wildest dreams over this past year. These are the symptoms that have improved:
Her pain has decreased so much that she’s basically off any prescription pain meds. She’ll take a very small piece (e.g., 1/8th) of a 5 mg Percocet tablet for pain in the evenings, but often goes without it now. This is compared to what she was taking when she first saw Dr. Jamie, when she was using a 25 mcg fentanyl pain patch supplemented with 15 mg oxycodone tablets 4 times/day. K will still have pain that puts her on the couch with her heating pad some evenings. But it’s nothing compared to how excruciating and unremitting it previously was. She also went off Lyrica a few months ago, and this time the withdrawal was barely noticeable.
A big shock is that her sleep/wake cycle has straightened out! She still takes tizanidine at night for sleep, but she can go without it and often substitutes Benadryl instead, believe it or not. She actually has a REGULAR bedtime now, after all of these years. She is still a bit of a night owl – bedtime is midnight or 1 a.m. and she usually sleeps until 10 a.m. – but she’s not just endlessly cycling around the clock, and is reliably awake during the daytime. What a difference being reliably awake during the daytime has made in her quality of life! As I described in my post a year ago, she’s had terrible sleep since she was born, so I never thought we’d see this.
One of K’s scariest symptoms was fainting without warning. That stopped happening over a year ago. When Dr. Jamie did the 5-minute standing mini-tilt test with K last October, K’s vital signs did what they were supposed to do and the test didn’t bother at all. The first time Dr. Jamie did this test, we had to stand right next to K to make sure we could catch her if fell, and it was very painful for her. Now she can stand up long enough to take a really looonggg shower (annoys the heck out of my husband) without all the blood pooling in her feet and ankles and no dizziness. She can even stand up in the kitchen long enough to help with dinner!
She is able to be on the internet again finally! Her cognitive limitations that made it impossible for her to do much more than watch tv and read romance novels a few hours a day are gone. Having an iPad also helps. Now she’s once again voraciously reading the news and the kinds of complex political and economic analyses she used to love, posting on facebook and in forums, handling twitter, and even doing some writing.
This, too, has straightened out. No more terrible cramping and it all works normally for the first time in her life. Interestingly, she’s just discovered that she does much better by avoiding gluten. She was tested for celiac when she was having extreme gut problems in her early 20’s, but was negative. And she’d tried a low-carb diet in the past, which seemed to make no difference at all previously. But now, also at Dr. Jamie’s recommendation, she’s finding that avoiding gluten and just about all processed foods is helping a lot.
The most amazing thing of all is that she’s now capable of vigorous physical exercise with no PENE!!! The background on this is that we’ve relocated to Hawaii – just in time for Dr. Jamie to move her practice to Arizona… But we fell in love with it here and moved this past year. Hubby and I got to Hawaii on September 1st. K wasn’t able to get here until early October because of complications from bringing her dog into Hawaii, but then had a full month of treatment with Dr. Jamie and basically finished detoxing off the prescription pain meds. She spent December and January in Seattle and handled it really well, despite it being cold, dark and damp, which formerly made Christmases there a really bad time for her – not to mention how difficult it was for her to handle the flights.
But here is the big news: She was well enough by late January to go SKIING!!! It’s something she has always loved, but she had to stop when she was about 16. We hadn’t even kept her equipment. So, she used one afternoon’s worth of energy to go get the rentals she needed. Then the next day, she was able to ski two runs in the afternoon, with no PENE. AND, she did it again the next day!!! (Apologies for all of the exclamation marks, but I really can’t help it.)
When she got back to Hawaii at the beginning of February, she started swimming. Vigorously. For increasing lengths of time and over increasing distances. In the ocean, with waves and sharks (seriously) and currents. Doing the crawl – you know, that swim stroke that has you lifting your arms over your head and uses the muscles in your neck, shoulders and back, where her worst pain has always been located??? And she says it feels wonderful – no PENE from this either! In fact, she craves the exercise now and goes at least every other day and often daily.
Oh, and Fatigue
I’ve never known what this is supposed to be about. She felt like shit all the time. She was in so much pain and misery she could never sleep well and any kind of exertion made everything worse. Or, she could never sleep well and so was in constant incredible pain and misery, and any kind of exertion made it all much worse, as well as making her feel fatigued. She desperately tried to sleep as much as she possibly could to escape the conscious experience of how unremittingly miserable she was, but it didn’t alleviate the misery, no matter how much she kind-of slept, and being constantly “fatigued” was a by-product of the entire mess. She was completely incapacitated and felt horrible all the time, awake, asleep or in between. She could barely move on most days. Is that “chronic fatigue?” “Feeling dead tired all the time” is the least of the categories of misery this disease imposes.
But, anyway, she still gets pooped out and has to lie down a good part of every day. She still has nightmares that interrupt her sleep from pain and misery some nights. She isn’t close to having the energy we see that her friends are able to expend in a day. She doesn’t faint, can get out of bed, dress herself, exercise, drive, stand, shower, shop a little, cook a little, talk on the phone or in-person for longer periods, chat online or text more and for longer periods, read and comprehend intellectually challenging stuff, and doesn’t pay for it. When she overdoes, the payback is limited to the next day and she’s not flayed by it for the next week or weeks or for months. She can travel on airplanes without being destroyed for weeks afterwards. She’s not in bed 24/7 with her eyeshade on and earplugs in, and doesn’t have to crawl to the bathroom. Is she less “chronically fatigued?” Yes, she feels less “fatigued,” but focusing on fatigue as the major symptom of this disease is ludicrous.
Taken together, this all adds up to much more of a real life than she’s had in 10 years. She’s not even close to being able to work or sustain a social life yet. But it seems like in a few more months…?
The next big step is resuming her education. Not only has it always been near and dear to her heart, but it’s also looking like she may be able to do paid work eventually and even possibly in a profession. It’s been 7 years since she finished the last online college course that she was able to complete. She tried for three more semesters, each of which ended abysmally. As any young person who has this disease has experienced, dealing with our educational systems’ rigidity and lack of comprehension has left lasting scars, not only to her self-esteem but also in response to the plain old distrust, insults and abuse that are visited on our very ill young people by so much ignorance. Speaking of PTSD, we’ve labeled all of that as Post-Traumatic-Student-Disorder. We’re not only dealing with the residue of bad educational experiences, but there is the additional discomfort now associated with being an older student. As we move through the processes required to get her enrolled in online classes again, I’m realizing that she’s not the only one with this version of PTSD!
In looking back at my blog post from 14 months ago, I see that I said, “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.” Well, we’re only just a couple months past a year out from that self-protective prediction – we didn’t want to let ourselves have too much hope. After all, there are stories around of PwME who go into remission for years at a time, attributing it to some combination of treatments or other, only to have it fade away over time or end with another crash. So, it’s possible this past 20 months of improvements may be another example of the relapsing/remitting nature of this disease. There may not actually be a link between the improvements and the high-flow oxygen, Deplin, the mild HBOT Dr. Jamie provided over a month in March 2012, and then again between October and December this year, dietary tweaks and getting her off all of the prescription meds.
But K has inadvertently done her own within-subject research on whether it’s these treatments that are actually responsible for the improvements. For example, there have been occasions over the past year when we were unable to arrange for her O2 in the midst of our moving and travels. She reports that within 2-3 days of being off the O2, her energy starts decreasing, then her pain level starts increasing, then the brain fog starts returning. She hasn’t had to go without it longer than 2 weeks, but she REALLY noticed the difference. The effects of going without Deplin are milder. Its absence also increases her fatigue and brain fog, but doesn’t have as much of an effect on her pain as the absence of O2 does. For a former treatment-resister of the youthful “if it’s not a magic bullet that makes me feel better immediately, I’m not going to do it” type, she’s become very dedicated to making sure, herself, that she has her O2 and Deplin now.
And now there is this happy little study from Turkey that came out the other day: “The efficacy of hyperbaric oxygen therapy in the management of chronic fatigue syndrome”. In a very preliminary way, it supports what K and some of Dr. Jamie’s other patients are experiencing. That is, if you pulse the patients with high dose oxygen, their symptoms abate. And, based only on K’s really positive, immediate happy experiences with HBOT vs. the slower, but continuing improvements from daily high-flow O2, I’m betting there’s a dose-response relationship that wouldn’t be hard to demonstrate at all, if there were researchers who had the funding to look into it. Of course, there is absolutely no money to be made by Big Pharma on this, so we can be sure that the NIH, CDC, the CAA, etc. won’t ever fund research on such a simple, inexpensive, accessible thing as high-flow oxygen from a tank or concentrator, which insurance and Medicaid/care in the US cover and can be delivered to the bedsides of even the sickest patients. But, I sure do hope these lovely guys in Turkey continue looking into it.
Once again, I apologize for the excessively long post, but I have two more things to report/say.
A Step Back
K went back on Lexapro last fall. In the Oct-Dec timeframe when K was upset about moving to Hawaii and was going through the rapid withdrawal, her mood tanked. Going back on it helped, even at the much lower dose she is now taking. I think she’s ready to go off it again, but I’m just an observer these days. With all of these improvements, she’s really able to be in charge of managing her own treatment. Yay!!! Dr. Jamie wasn’t in favor of K going back on Lexapro last fall, but K was sure she needed it then, and Jamie was so good about supporting K’s decision. They’ll figure it out. As a Mom who spent years in pure panic mode, it so is nice to have K able to evaluate these things for herself. It’s even nicer that K has a Dr. who puts her ego aside, understands how complicated and interesting it is for K to be emerging from the horrible prison of this illness, and knows how to support K as she begins catching up in life.
Rate of Improvement, New Benefits from Old Ideas, and New Sensitivities
The strangest thing about all of this is that K’s rate of improvement has massively accelerated since she got past the opiate and other prescription med withdrawals in January (except Lexapro, as above). Whereas the first year or so on Dr. Jamie’s treatments gave her slow, but steady improvements, over this past 3-4 months, the pace has accelerated. Was all that garbage interfering with and slowing down the rate of her improvements? Probably.
Or, what if there are thresholds in this disease where old hat treatments/changes actually can make a difference, if we could somehow stop the cascade of failures? I don’t discount the beneficial effects of K getting off the dozen or more prescription meds her previous physicians had thrown at her (and I permitted in desperation – Mom guilt). But, beyond that, over the past 20 months, it’s as if every system that failed sequentially as her disease progressed has been coming back online.
As she was getting sicker and sicker, it was like this disease attacked one system at a time. As I wrote in my post last year, she had sleep and gut problems from birth, and those have been the most recent improvements. The OI/POTS and migraines came next at puberty. Then, the excruciating pain and fatigue/PENE soon after, but distinctly later by a year. Then the complete hormonal failures. Then a wild and crazy exacerbation of her gut problems that had her in the hospital numerous times for a year. And finally, the complete cognitive shutdown. Over the past 20 months, it’s as if the systems that control those symptoms at first stuttered into occasional action, then have eventually kicked in to functioning somewhat close to normally again. I’m reminded of Paul St. Amand’s claims about how “reversal” works on his guaifenesin protocol. It has been interesting how the symptom sets have improved in the reverse order from how they initially shut down.
It is also so strange how things that made no difference at all or made her WORSE while she was getting sicker and sicker are now making a positive difference. I mean, really, how weird is it that she’s now dedicated to vigorous exercise to control her pain and it actually makes her feel better overall with no PENE? How can that be? And how strange is it that she’s suddenly discovered she is gluten intolerant? Another small change is that arnica actually works for her now to give a little pain relief now and then, when it was one of the first treatments we tried and did nothing at all to help her back then. What’s with that?
Wishes, not Conclusions
I wish we knew why Dr. Jamie’s treatments have been so good for K. I wish we knew what has been making these treatments work so well for her, but not some others. I especially wish we knew whether K’s upward trajectory will continue and the improvements will last.
I’ll continue to post updates as this evolves. A little more wellerness as every month goes by has been unbelievably wonderful.
Hate this disease, but I sure do love Dr. Jamie. Thanks so much, dearest friend.
K after swimming