I've been a terrible blogger, and a terrible blog reader the last few months. I've been trying out a new "exercise" regime and spend pretty much all my time in bed recovering, with the usual burning, tingling, aching muscles and extreme exhaustion, etc. But...fingers crossed...it seems to be doing something positive for me despite the crashing. I keep wanting to post about it, but can't find the motivation/energy for the long blog post that will inevitably result. So, instead I'll just share an interesting talk I just watched recently. While I'm wary about claims of broad cures for mysterious illnesses, the dietary suggestions in this talk sound like something I'd love to try out, though it sounds SO hard (9 cups of fruits/veggies a day...yikes!). The talk is only ~15 minutes long and worth a listen.
http://tedxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Min
Hope everyone's doing well out there in the blogosphere!
Monday, May 6, 2013
Wednesday, March 13, 2013
Linking Lyme Disease to CFS?
I've been hatching a bit of a scheme lately. I haven't taken any action on it yet, but I thought I'd put it out there at least, to get some feedback and to motivate me to take the next step. After being diagnosed with Lyme disease in April 2012, pretty much out of nowhere (my CFS started with mono almost 5 years ago and I have no memory of tick bites ever), I've been thinking maybe Lyme is more common in CFS than people think. Chronic Lyme symptoms are very very similar to CFS: fatigue, neurological problems, cognitive problems, joint/muscle pain, etc etc. It's a disease that presents with very heterogeneous symptoms. My CFS doc says that 60-70% of his patients that come to him with CFS end up having Lyme, and Fibromyalgia has been linked to Lyme disease in his experience. Even if the numbers are not as high as that and only even 10-20%, isn't it still worthwhile to find out exactly what is and isn't afflicting us??
Herein lies the problem: finding out. The problem with testing for Lyme is that the widely used tests are indirect (ELISA and Western blot) and come up with many false positives and, more importantly, false negatives. As I understand it, the longer the person is out of the acute/early stage of infection, the less likely you are to come up positive on the indirect tests, especially the ELISA since it measures antibodies and if your immune system is shot to hell you won't be producing many antibodies for Lyme. But, there is a new test that's come out in the last few years that is more direct. It's a blood culture that actually grows the Lyme bacteria. It takes 3 months and, unfortunately, costs $600 (yikes). It hasn't been validated yet by an independent source, unfortunately, which does seem a little sketchy so I'll probably wait until that's done to hatch my plan.
That said, here is my idea. Well, 2 ideas:
Herein lies the problem: finding out. The problem with testing for Lyme is that the widely used tests are indirect (ELISA and Western blot) and come up with many false positives and, more importantly, false negatives. As I understand it, the longer the person is out of the acute/early stage of infection, the less likely you are to come up positive on the indirect tests, especially the ELISA since it measures antibodies and if your immune system is shot to hell you won't be producing many antibodies for Lyme. But, there is a new test that's come out in the last few years that is more direct. It's a blood culture that actually grows the Lyme bacteria. It takes 3 months and, unfortunately, costs $600 (yikes). It hasn't been validated yet by an independent source, unfortunately, which does seem a little sketchy so I'll probably wait until that's done to hatch my plan.
That said, here is my idea. Well, 2 ideas:
- Contact the lab (Advanced Laboratory Services ) that does the Lyme tests and see if they'd be willing to add CFS questionnaires to their future research project (described in my post here). Somehow I don't think this will pan out but I can try.
- This, really, is my big idea. There are many websites out there that do crowd funding (raising money from the internet goers at large), especially for charity work (see here for examples). I would like to get in contact with someone from a CFS/ME non-profit in the US (since the lab only currently tests in the US) and join forces with them (because why would anyone listen to little ol' me). Then, we can start a research project to be funded on one of those websites, and have individuals with CFS submit detailed questionnaires and medical history (if that's legally allowed) and get tested for Lyme disease.
There will be a lot of questions that arise from the crowd funding project, I'm sure. Who gets selected and how, how many people, etc. And to make this a real research project, you'd need a "control group": a group of healthy individuals who also get tested for Lyme. There probably won't be enough money for that too unfortunately.
The goals for me are two-fold: 1) do a research study to see if Lyme really is prevalent in the CFS community, and 2) just get as many people tested as possible because it's so damn expensive. Two birds, one stone. And maybe, just maybe, if the results are interesting, it'll get some attention. And then someone else with actual money might take this on. I'm geared up for a revolution here ;)
If anyone has any thoughts or suggestions about this, or even connections at a non-profit who could chat with me and potentially get involved, that would be great. Thanks all if you made it through this incredibly long post :)
Friday, February 22, 2013
The trickiness of cortisol
I've been avoiding the computer a bit, my carpal tunnel has been acting up again. But I had this revelation recently and I thought I'd share. I've been feeling recently that my improvement from the antibiotics I've been taking for my Lyme has plateaued a bit and I'm very frustrated. I was expecting to take time off from work and thus feel better faster, and it's just not happening (I'm going to lay partial blame on my messed up back for this too). So I've been racking my brain trying to think of other things I can try and I had this memory pop up from my bio classes in college. High levels of cortisol (adrenaline) impair immune function. My doc tests my cortisol levels every 2 months and I, more often than not, come up higher than the range. He gives me supplements to take (magnolia bark extract, ashwagandha extract, phosphatidylserine, l-theanine) before going to bed so that my high cortisol levels don't mess with my sleep as much. They help a little I think, but my body's just too stressed out! So, I need to start finding ways to lower it on my own. I keep telling myself I should try meditation (meditation lowers cortisol levels), and maybe I've found a concrete reason to get myself to do it this time! I have another appointment coming up in mid March. Hopefully I can keep myself on track!
Also, it's important to note that while high cortisol levels have been noted in people with Lyme and even chronic fatigue syndrome, that's not always the case. Sometimes infection or whatever overload your body is experiencing, can cause your adrenal glands to shutdown. Case in point, when I first started seeing him, I had horribly depressed cortisol levels and he started treating my high reverse T3 with bioidentical thyroid while monitoring my cortisol levels, they slowly became more normal (and now are too high!). [Also important to note, the interplay of thyroid and cortisol hormones, but that's another post for another time.] And having depressed cortisol levels is bad too because your body does still need a balanced level of cortisol to keep your immune system, and just body in general, running optimally. So, this cortisol stuff is tricky! If you haven't had your levels tested, I might recommend it. And even if you're within range, but still in the high range, consider trying things out to get them to lower!
Anyway, sorry I've been MIA lately and haven't been keeping up to date with people's blogs (stupid wrist), but I hope everyone's doing as well as could be!
Also, it's important to note that while high cortisol levels have been noted in people with Lyme and even chronic fatigue syndrome, that's not always the case. Sometimes infection or whatever overload your body is experiencing, can cause your adrenal glands to shutdown. Case in point, when I first started seeing him, I had horribly depressed cortisol levels and he started treating my high reverse T3 with bioidentical thyroid while monitoring my cortisol levels, they slowly became more normal (and now are too high!). [Also important to note, the interplay of thyroid and cortisol hormones, but that's another post for another time.] And having depressed cortisol levels is bad too because your body does still need a balanced level of cortisol to keep your immune system, and just body in general, running optimally. So, this cortisol stuff is tricky! If you haven't had your levels tested, I might recommend it. And even if you're within range, but still in the high range, consider trying things out to get them to lower!
Anyway, sorry I've been MIA lately and haven't been keeping up to date with people's blogs (stupid wrist), but I hope everyone's doing as well as could be!
Friday, January 18, 2013
Free Lyme culture test for certain states - for research
Let me first start with a fun fact I got today from my CFS doc during my appointment:
Quite a shocker, let me tell you.
Which leads me to...saw this article about how Advanced Laboratory Services are starting a research trial to create a faster, cheaper Lyme culture (faster than the $600 test that takes up to 3 months that they currently have). They run your sample through both the full, well-established test, and through the new methods as part of the research study free-of-charge. Someone else posted on the forum where I saw the article that only certain states qualify (i.e. your doctor has to be registered in that state) for the research trials:
and they're still in the process of sorting everything out, the testing hasn't begun yet.
The first step seems to be to have your doctor fill out a form and contact Advances Lab Services. From the article:
Advanced Labs will only talk to doctor's offices, so it won't do any good to talk to them directly unfortunately. I hope this is somewhat helpful to people! If you need a doc to write you a test (they're in California, but you can reside anywhere to see one of their doctors--they do Skype/phone appointments and such-- my CFS doc's clinic can provide a doctor. However, they're out of network and might not necessarily be covered. but one appointment is probably cheaper than the original cost itself test itself, if you can get it free.
60-70% of the patients that come to him with CFS and Fibromyalgia turn out to have Lyme disease.
Quite a shocker, let me tell you.
Which leads me to...saw this article about how Advanced Laboratory Services are starting a research trial to create a faster, cheaper Lyme culture (faster than the $600 test that takes up to 3 months that they currently have). They run your sample through both the full, well-established test, and through the new methods as part of the research study free-of-charge. Someone else posted on the forum where I saw the article that only certain states qualify (i.e. your doctor has to be registered in that state) for the research trials:
CA, CT, FL, IA, MD, MA, MN, NH, NJ, OR, PA, UT, VA, VT and W
and they're still in the process of sorting everything out, the testing hasn't begun yet.
The first step seems to be to have your doctor fill out a form and contact Advances Lab Services. From the article:
Regular collection kits can be ordered by practitioners online by clicking on “Order Kits” (tab at top right). Click here for website. Research kits will only be sent after a practitioner has registered with the lab and each patient has been pre-qualified – there is a form that the lab will provide to interested practitioners. Practitioners can email the lab at questions@advanced-lab.com.
Advanced Labs will only talk to doctor's offices, so it won't do any good to talk to them directly unfortunately. I hope this is somewhat helpful to people! If you need a doc to write you a test (they're in California, but you can reside anywhere to see one of their doctors--they do Skype/phone appointments and such-- my CFS doc's clinic can provide a doctor. However, they're out of network and might not necessarily be covered. but one appointment is probably cheaper than the original cost itself test itself, if you can get it free.
Thursday, January 3, 2013
Asking for help
Happy New Year everyone! So happy 2012 has passed, may 2013 be a better year for all of us :)
I flew home for 4 days right before the New Year to see my family. It's not my first flight home since I've moved (first was Thanksgiving) but I flew down by myself without my boyfriend, which was a first for me (we flew back up together, long story). I was SO nervous to face the airport by myself, I worried about it for almost the whole week leading up to it and felt nauseous most of the day of the flight. I had no idea what to expect, long lines, chaos, who knows. The beau was quite wonderful and looked up TSA info on getting through security lines for people with a disability and made me call the airline to get more info on boarding and such, when I was refusing to. There wasn't a LOT of info, but it made me a little braver to stand up for myself and my needs. Can I just say, I HATE all of that. I want to do things myself, I refuse to be wheeled anywhere (people keep suggesting this), I don't like to talk about my Lyme and CFS, and I don't like drawing attention to myself. I'm very stubborn. But I also realized I don't want to feel more sick than I have to, so I swallowed my pride and asked for help. I told the person at security I had a medical condition that prevented me from standing in line, and he let me bypass the security line. I told the attendant by the gate the same thing and they let me pre-board. It was so nice! And it made the airport trip much more manageable. I also sat on my carry-on suitcase whenever I had to stand, which probably looked weird, but what the hell.
Maybe it's coincidence, or it's just people realize how much they miss their independence after the fact, but it seems like a lot of people with CFS, ME, Chronic Lyme, etc all used to be very independent and had/have (to our own demise) a strong sense of self. The hardest lesson I have learned (other than staying within my limits) is asking for help. And I can't say that I've actually "learned" it yet, I only do it under extreme coercion heh. Why is it that I find it so hard to admit I need help and ask for it, even minor things? Yes, it will probably get me a few looks, draw some questions but in the end I'd like to think I would get the help I need to get through the day with at least a tiny bit less fallout. And if we're out in the world, there may even be a legal obligation for others to help us ;) Maybe I'm too naively optimistic; I haven't actually tried it enough to know, but I can hope!
I've forced myself to ask help from roommates, family, coworkers, my boyfriend. Every time I do it, I feel like I'm tearing away a piece of my soul and it hurts. It sounds overly dramatic, but it's hard to understand you've had your independence taken away. In the end, I'd like to think that these moments I buckle and ask for help will help save my energy a little, will help me heal a little bit more, and when I'm better I will be able to repay everyone a thousandfold. We'll see I guess.
I flew home for 4 days right before the New Year to see my family. It's not my first flight home since I've moved (first was Thanksgiving) but I flew down by myself without my boyfriend, which was a first for me (we flew back up together, long story). I was SO nervous to face the airport by myself, I worried about it for almost the whole week leading up to it and felt nauseous most of the day of the flight. I had no idea what to expect, long lines, chaos, who knows. The beau was quite wonderful and looked up TSA info on getting through security lines for people with a disability and made me call the airline to get more info on boarding and such, when I was refusing to. There wasn't a LOT of info, but it made me a little braver to stand up for myself and my needs. Can I just say, I HATE all of that. I want to do things myself, I refuse to be wheeled anywhere (people keep suggesting this), I don't like to talk about my Lyme and CFS, and I don't like drawing attention to myself. I'm very stubborn. But I also realized I don't want to feel more sick than I have to, so I swallowed my pride and asked for help. I told the person at security I had a medical condition that prevented me from standing in line, and he let me bypass the security line. I told the attendant by the gate the same thing and they let me pre-board. It was so nice! And it made the airport trip much more manageable. I also sat on my carry-on suitcase whenever I had to stand, which probably looked weird, but what the hell.
Maybe it's coincidence, or it's just people realize how much they miss their independence after the fact, but it seems like a lot of people with CFS, ME, Chronic Lyme, etc all used to be very independent and had/have (to our own demise) a strong sense of self. The hardest lesson I have learned (other than staying within my limits) is asking for help. And I can't say that I've actually "learned" it yet, I only do it under extreme coercion heh. Why is it that I find it so hard to admit I need help and ask for it, even minor things? Yes, it will probably get me a few looks, draw some questions but in the end I'd like to think I would get the help I need to get through the day with at least a tiny bit less fallout. And if we're out in the world, there may even be a legal obligation for others to help us ;) Maybe I'm too naively optimistic; I haven't actually tried it enough to know, but I can hope!
I've forced myself to ask help from roommates, family, coworkers, my boyfriend. Every time I do it, I feel like I'm tearing away a piece of my soul and it hurts. It sounds overly dramatic, but it's hard to understand you've had your independence taken away. In the end, I'd like to think that these moments I buckle and ask for help will help save my energy a little, will help me heal a little bit more, and when I'm better I will be able to repay everyone a thousandfold. We'll see I guess.
Thursday, December 6, 2012
8 month Lyme treatment update
(See bottom for a brief summary, this is a bit long). I've been a bit MIA lately. A few days after I wrote my gung-ho post on taking control of my life and starting a graded "exercise" program, I somehow managed to re-aggravate my whiplash from my car accident in February (I'm guessing from the move?) and boy did it come back with a vengeance. For almost a month, I was unable to sit without pain all over my back; it's like every muscle became hyper-sensitized and any aberrant movement would send it into spasms. Anyway, nothing was helping so I found an acupuncturist and slowly I've been getting better and can sit up again without too much pain and most importantly, without making it worse which was an issue before.
So, I've spent the last 4+ weeks just lying around and going crazy with cabin fever, and feeling pretty depressed. I had no sense of how I was doing CFS/Lyme disease/what-have-you-wise since I wasn't ever "testing" myself. Until this last Saturday! And that's where the Lyme update comes in...
I went to my boyfriend's work holiday party! I'm so proud of myself, we took the subway into San Francisco, took a taxi to the club, had our photo taken inside, good stuff. I sat the whole time awkwardly while everyone else shmoozed standing at the bar, but I don't care! It was a thrill to just even make it to the subway! Would have been happy to go home right then and there. I walked 1.5 miles (info thanks to my trusty pedometer) over the course of the whole day (getting ready at home til we got back at 1am). Three months ago, I was definitely only able to walk at most .8 miles. I feel like 1.5 miles seems so meager compared to what normal people do, especially if you consider it was spread out over the whole day, but it's a huge victory for me. The best part is that even though I was fatigued the next day and had some of the muscle-burning action going on, I didn't have any huge crash or anything. I've spent the rest of the week mostly resting, but I've also managed to run a few errands!
So, despite my month+ of doing absolutely nothing and being unable to even wash a single dish, I appear to have made progress! I'm very hopeful.
In case anyone's curious, my doctor also put me on a third antibiotic (Tinidazole), so I'm up to 4 types of meds daily. Tinidazole is supposed to be a Lyme-cyst buster. Lyme bacteria turns into cysts when it's environment is threatened, and then goes back to bacteria form some time after the threat disappears. This is why some people get "cured" from chronic Lyme, but then get sick again later. Darn cysts!
So in summary:
Hope everyone's doing as well as could be, emotionally at least if not physically!
So, I've spent the last 4+ weeks just lying around and going crazy with cabin fever, and feeling pretty depressed. I had no sense of how I was doing CFS/Lyme disease/what-have-you-wise since I wasn't ever "testing" myself. Until this last Saturday! And that's where the Lyme update comes in...
I went to my boyfriend's work holiday party! I'm so proud of myself, we took the subway into San Francisco, took a taxi to the club, had our photo taken inside, good stuff. I sat the whole time awkwardly while everyone else shmoozed standing at the bar, but I don't care! It was a thrill to just even make it to the subway! Would have been happy to go home right then and there. I walked 1.5 miles (info thanks to my trusty pedometer) over the course of the whole day (getting ready at home til we got back at 1am). Three months ago, I was definitely only able to walk at most .8 miles. I feel like 1.5 miles seems so meager compared to what normal people do, especially if you consider it was spread out over the whole day, but it's a huge victory for me. The best part is that even though I was fatigued the next day and had some of the muscle-burning action going on, I didn't have any huge crash or anything. I've spent the rest of the week mostly resting, but I've also managed to run a few errands!
So, despite my month+ of doing absolutely nothing and being unable to even wash a single dish, I appear to have made progress! I'm very hopeful.
In case anyone's curious, my doctor also put me on a third antibiotic (Tinidazole), so I'm up to 4 types of meds daily. Tinidazole is supposed to be a Lyme-cyst buster. Lyme bacteria turns into cysts when it's environment is threatened, and then goes back to bacteria form some time after the threat disappears. This is why some people get "cured" from chronic Lyme, but then get sick again later. Darn cysts!
So in summary:
- Messed up my back, no resistance-based exercises for me for some time :(
- I've been taking a new medication called Tinidazole for Lyme as of 2 months ago.
- Other meds I take daily for Lyme Disease are Doxycycline, Amantadine, and Ciprofloxacin
- I was able to attend take public transportation and attend a holiday party.
- I walked 1.5 miles over the whole day without a huge crash after, but still experienced symptoms (compare this to three months ago where I could only walk .8 miles with similar symptoms)
- Hurray!! :)
- Also, I don't really talk about my interstitial cystitis (painful inflammation of the bladder) much, but it's still a big problem, definitely effects having a normal relationship :( Found this article written by a doctor who suspects a relationship between Lyme disease and interstitial cystitis. Hmmm...
Hope everyone's doing as well as could be, emotionally at least if not physically!
Tuesday, October 2, 2012
Taking control
I feel like the CFS (or Chronic Lyme, now, I guess?) has been calling the shots the last few years but now it's time to take some of that control back! Well, I'm going to try my best anyway! Two weeks ago, I left my job and family behind to move 400 miles with my boyfriend to northern California for his new job. The move took a heck of a lot out of me, but I finally feel like I'm back to where I was, at least to 2 weeks ago levels! Hurray. There's so much left to unpack and it's overwhelming to think about, but the apartment is not a pigsty anymore; the boxes are at least neatly stacked on top of each other :). I also survived my first IKEA trip with the beau (with resting to recover after). Well, I made it around the top level at least; lots of places to stop and sit for a bit with all the sofas, and kitchen chairs, and desk chairs.
Anyway, back to the taking control part. I am now unemployed and we've decided I will stay as such until I get better (because it WILL happen, dammit!). My CFS doc thinks I'm at a point where I should start doing some resistance-type exercise because it's supposed to boost the immune system when done at that hard-to-achieve non-detrimental level. This decision was based on the fact that my reverse-T3 levels have gone down quite a bit form an initial level 3 years ago of 53 to 16 at the last visit. I was wary of this idea at first, but since he hasn't led me astray yet and I've been slowly but continuously improving since I started seeing him, figure I should follow his directions.
I've set up a strict activity regime for the day. The goal is to start activity at a level that I know I will tolerate, however little it may be, and build up on it in tiny increments every week. If I start or arrive at a point I can't tolerate, I move down to a tolerable point until I feel like I can move up. And I will never push myself to do more than I feel comfortable with just because I feel "I should". Or at least, try not to. Much easier said than done! So 3 times a day (after every meal) I will go for a walk (.1 miles, to the edge of my apartment building and back). I've broken up the walk into 3 small portions so I can come back home and rest right after. Next week I'll increase to .13 and see how I feel. Then on alternating days, I do either weights (starting at 1 lb, 10 reps of bicep and tricep, and a couple sit ups) or this restorative/healing yoga video that I found (picking and choosing the mildest exercises that all involve laying down and mostly stretching). With these also, I will slowly increase the difficulty level a tiiiiny bit every couple of weeks. After each activity, I rest rest rest to avoid any over-exertion and potential crash.
We'll see how it goes, but I'm super committed. I've even made a spreadsheet to keep track of walking distance, heart rate, weight amount used, length, etc. I'm a nerd. Thing is, I've had experience in the past that has shown this sort of thing is beneficial to me (doing literally 6 seconds of a lower back exercise twice a week and slowly building every few weeks--adding second by second-- helped me be able to go grocery shopping for myself again!), so I'm excited to do it in a controlled environment.
Anyway, back to the taking control part. I am now unemployed and we've decided I will stay as such until I get better (because it WILL happen, dammit!). My CFS doc thinks I'm at a point where I should start doing some resistance-type exercise because it's supposed to boost the immune system when done at that hard-to-achieve non-detrimental level. This decision was based on the fact that my reverse-T3 levels have gone down quite a bit form an initial level 3 years ago of 53 to 16 at the last visit. I was wary of this idea at first, but since he hasn't led me astray yet and I've been slowly but continuously improving since I started seeing him, figure I should follow his directions.
I've set up a strict activity regime for the day. The goal is to start activity at a level that I know I will tolerate, however little it may be, and build up on it in tiny increments every week. If I start or arrive at a point I can't tolerate, I move down to a tolerable point until I feel like I can move up. And I will never push myself to do more than I feel comfortable with just because I feel "I should". Or at least, try not to. Much easier said than done! So 3 times a day (after every meal) I will go for a walk (.1 miles, to the edge of my apartment building and back). I've broken up the walk into 3 small portions so I can come back home and rest right after. Next week I'll increase to .13 and see how I feel. Then on alternating days, I do either weights (starting at 1 lb, 10 reps of bicep and tricep, and a couple sit ups) or this restorative/healing yoga video that I found (picking and choosing the mildest exercises that all involve laying down and mostly stretching). With these also, I will slowly increase the difficulty level a tiiiiny bit every couple of weeks. After each activity, I rest rest rest to avoid any over-exertion and potential crash.
We'll see how it goes, but I'm super committed. I've even made a spreadsheet to keep track of walking distance, heart rate, weight amount used, length, etc. I'm a nerd. Thing is, I've had experience in the past that has shown this sort of thing is beneficial to me (doing literally 6 seconds of a lower back exercise twice a week and slowly building every few weeks--adding second by second-- helped me be able to go grocery shopping for myself again!), so I'm excited to do it in a controlled environment.
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