I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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Friday, August 22, 2014
August Update
Big sigh...my oldest son moved back to college today and my youngest goes back to high school next week, so I am hoping that the flurry of frantic activity that has been this summer will finally slow down a bit. Sorry for the lack of blog posting. I was away with no internet for more than two weeks this month and haven't had a moment to myself since! So, here is a quick update on me and some of the things I posted about earlier this summer:
Youngest Son:
I wrote back in July that my 16-year old son had gone off his Florinef successfully for the first time in 8 years and seemed to be recovered. Well, I am happy to report he is still doing well! It's been about 6 weeks now, and he's still full of energy with no crashes at all. He started soccer last week, with often 3-4 hours of practice a day, and is still fine. He also got his license, a car, and his first girlfriend! In short, we've barely seen him, and he is a normal, active 16-year old. He really does seem recovered. We are thrilled, of course!
Oldest Son:
As I said, I helped my 20-year old son move back to college today. He's the one with far more serious health problems. He's had ME/CFS for 10 years and also has 3 tick-borne infections that went undiagnosed for 5 years. In case you're unfamiliar with Lyme disease, that makes them very difficult to treat and get rid of. He started treatment for those 3 infections about 4 years ago and was in terrible shape (again) this winter until we started working with a dietician and took him off antibiotics and switched to a well-known herbal protocol.
He is still doing well with this regimen, though progress has been slow...but at least he hasn't backslid. The restricted diet is tough for him, but he learned for himself this summer that it really does help when he sticks to it, so he wants to keep trying. He is very slowly increasing his dose of the herbal stuff - he's only taking 1 drop of the stuff every other day! It's potent, and he can tell it's working. Vitamin B12 shots every other day, chosen specifically for his genetic type, have had an immense positive impact, and the dietician is trying to maximize that with some minor adjustments this fall.
So, he starts his junior year of college next week, still taking 3 classes a semester (but now they are all tough engineering classes so that is quite a feat!). His grades went from barely B's and C's last year to A's and B+'s more recently, so that is further proof that he is improving. It is a struggle for him every day, and I can't imagine dealing with all this at 20, a time in life normally defined by freedom, but he is strong, loves being at college with his friends, and has an incredible positive attitude. He's my hero.
Dads:
As I mentioned earlier this summer, my Dad was diagnosed with stage 3 melanoma this summer. He's undergone two surgeries so far and as soon as his wounds heal, he will start Interferon treatment. We have been up to Rochester, NY, (my hometown) 3 times this summer to visit. The surgeries have gone well, but he knows he has a tough time ahead. I have been researching supplements and other OTC things that can help cancer patients.
At the same time, we have spent much of the summer making arrangements to move my 89-year old father-in-law from Oklahoma out here to Delaware. The move will finally take place over the next 3 weeks. All of this has been very stressful for the whole family.
Lyme Disease:
About a month ago, I posted that I have Lyme disease for the second time. This time, I caught it quickly and started treatment immediately. Within 2 days on doxycycline, I was feeling much, much better and within about two weeks, there was no sign at all of any Lyme symptoms. That was about July 28. The rule of thumb is to stay on antibiotics for at least 4-6 weeks after all symptoms disappear (because the Lyme bacteria have a 28-day reproductive cycle), so I should be able to stop the doxcycyline in about a month. We just saw the Lyme doctor this week, and he was very pleased that I'd responded so fast (catching it quickly makes all the difference!).
Me Overall:
Despite all the stress and extra activity this past month, I have been doing quite well physically and managing a lot. Besides getting rid of Lyme, we made an adjustment to the way we dose our low-dose naltrexone, and it has made a huge difference. Don't worry - that will be my next post, next week! I just need to find a few minutes to look up some background information. I am still eating a mostly Paleo diet, too - not only to support my son but also to keep yeast overgrowth under control, especially since I am on antibiotics again.
I managed a lot of physical activity on vacation and enjoyed hiking and kayaking. Check out last year's post-vacation post about why I can do so much more on vacation.
So, I am pretty exhausted from everything and my husband and I are both feeling overwhelmed, but all things considered, I am doing well. I am really looking forward to the start of school next week and getting back to a more normal, quieter routine where I can take care of myself better and find some writing time/energy.
How has your summer been?
Visit my book blog tomorrow for some vacation photos for Snapshot Saturday!
Sounds like you have a lot going on, Lyme is such a terrible illness, I'm in the UK stuck between a Chronic Lyme, ME / we don't know what you've got diagnosis, (had a bit of a summer of it with my pancreas packing up and then recovering again, medically that sould not happen :( ) really no fun, wishing you and the family well. Clare
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