So - just got back from having some more tests run ... started with some more blood tests that revealed re-activated Epstein Barr virus, continued mycoplasma infection, continued Lyme and low vitamin D levels. Then, I spent two days in Berkeley getting some neurocognitive testing and two days in Stockton for some exercise tolerance testing ... I did two MAX exercise stress tests two days in a row. The first one showed a completely normal (high end of normal) response -- good VO2 max, lung capacity, oxygen exchange, everything. The second day I had a marked decrease (from 8 to 50% on various measures) ...anything over 8% is considered statistically valid - a normal person can duplicate a similar response within 7% on two days in a row. They've added Chronic Fatigue Syndrome to my diagnosis (caused by the Lyme) and these tests confirmed. In addition, I scored very, very high on the cognitive portion when rested and 3 standard deviations below normal when exhausted -- indicating that my brain doesn't function well when the physical body isn't working properly.
The biggest thing I learned is that I can't let my heart rate get too high. I need to get a heart rate monitor and wear it to keep my heart rate low -- letting it elevate will send me into the post state of reduced function (as above), but if I keep it low I should be able to continue to function at a higher level. This means re-adjusting my thinking towards my work-outs. Whereas a normal person should increase the time and intensity of their workouts, I need to continue to keep mine low and focus on non-cardio activities like yoga, pilates & weights. That would be great EXCEPT one) I don't have time to go to a yoga or pilates studio or a gym -- well, time isn't the issue as much as what to do with Adam b/c I'd need to go during the day and two) Mike doesn't believe in paying for anything exercise related. It's funny - he'll pay $100 per month for cable and internet (these have value to him) but won't even consider paying for anything exercise related b/c he doesn't consider it essential. Exercise is of so little value to him that he won't even use any of his time help me put together the treadmill that was free! tee hee :o) Sometimes I think we must be the most incompatible people on earth and then he doesn't something so incredibly sweet that I can't resist ;)
Anyway, the next step is a test that measures my body's ability to process vitamins and minerals (looking for a reason for the low vit. D - which affects the immune system and could explain all the infections) and a sleep study (my dr. wants to see if I'm sleeping poorly (apnea or anything like that) to explain things further).
Since I missed so much work I'm playing catch up and I'm exhausted! However, it's good to be home and see Adam!!!!
4 comments:
I found your blog through google Lyme alert.. I too have Lyme and CFS from the Lyme. I have been sick for nearly 25 yrs but diagnosed only 20 mo ago with Lyme..and coinfections.
Your little guy is adorable. We have over a dozen grandbabies we enjoy very much when we can...
How great to hear of someone with knows/understands what's going on! I wish you the best on treatment - continue to enjoy those grandbabies ... I'm learning how fast they grow up!
Hi -
Thanks for stopping by my blog and taking the time to comment. It's great that you've gained such a thorough understanding of the exercise intolerance of CFS - moderating your activity level can help tremendously to manage the day-to-day illness and to help avoid crashes from over-exertion.
It sounds like this is all pretty new to you. I don't know how much of my blog you read, but I am just finishing up treatment for Lyme disease that I contracted this summer (I've had CFS for 7 years). It took me awhile to get rid of it - I did well on the first round of abx but then relapsed when I quit them too soon.
Both of my sons have CFS, and the older one's CFS was triggered by Lyme, as you said yours was - it's a common trigger. About 10% of the people who get Lyme go on to develop CFS (same with mono/EBV).
If you haven't already, you might want to consider adding anti-virals to your antibiotic therapy. Both Lyme and CFS can cause a reactivation of latent viruses (like your EBV) which makes you feel so much worse. Anti-virals have helped me a lot.
Please feel free to stop by my blog again or e-mail me if you have any questions about CFS, Lyme, or treatments...or if you just want to talk with someone who gets it!
I'll stop by again -
Sue Jackson
www.livewithcfs.blogspot.com
P.S. Your son is adorable! My second son's first word was ball, and he still loves to be active.
P.S. You mentioned you're wondering how to manage moderate, easy exercise. What has worked for me is short walks (sometimes with understanding friends who don't mind taking it easy!), light weight exercises done one or two at a time, perhaps a couple of times on a good day, and yoga at home with videos or DVDs. I found that public classes were too much for me - sometimes pushing me to do more than I could handle without causing a crash - but with videos at home, I can adjust the level of exertion to how I'm feeling that day. It's even better with DVDs that feature lots of short segments - then you can put together your own customized routine each time.
Given your background, if you want to know more about what's behind the exercise intolerance, just let me know. There hasn't been a lot of research, but there are a few good studies and articles that explain what's behind it.
Sue
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