Let's see if I can get any further this time...
I'm pegged at 10 on the ol' crash-o-meter just now, but that hasn't been the case since August! I *did* push too much, too much of the time w/o realizing it – I was just having fun with Mary Anne and forgot to pace. Then I'd be wiped and have no energy for being in touch here... You ever get that? Sorry. :-(
Right now I'm red-lined for sort of a good reason. I finally fired my old PCP and am now seeing docs at a family residency practically across the street. They know that ME/CFS is a real illness!! I've been there 4 times, have seen 4 different docs and am in the Integrative Medicine program. I've been really impressed with them; each time I've gone, they've given me 1-2 hours! They also talk to each other – about my case! What a concept!
The doc I saw 10 days – 2 weeks ago wanted to see what would happen if I took a “supplement holiday”. He let me keep my choice of 6-7 of what I've been taking and pause all the others for 6 weeks or so. Stupidly, I didn't tell him I was pretty sure what would happen, but I didn't and it did. Wham! Into the wall and squee-eeek-slide to the floor. So I re-started the D-ribose at 15 grams a day, just like beginning the protocol – it's helped, but I'm not where I was. I think I'll report my results back to the doc before the month-away appt. and begin adding things back in, one at a time, at least a week apart from one another.
Whew... I'm done. I'll try to get back in and do another update soon... maybe even post some foliage pics – it's wonderful this year!
Love to All, Jack
Right now I'm red-lined for sort of a good reason. I finally fired my old PCP and am now seeing docs at a family residency practically across the street. They know that ME/CFS is a real illness!! I've been there 4 times, have seen 4 different docs and am in the Integrative Medicine program. I've been really impressed with them; each time I've gone, they've given me 1-2 hours! They also talk to each other – about my case! What a concept!
The doc I saw 10 days – 2 weeks ago wanted to see what would happen if I took a “supplement holiday”. He let me keep my choice of 6-7 of what I've been taking and pause all the others for 6 weeks or so. Stupidly, I didn't tell him I was pretty sure what would happen, but I didn't and it did. Wham! Into the wall and squee-eeek-slide to the floor. So I re-started the D-ribose at 15 grams a day, just like beginning the protocol – it's helped, but I'm not where I was. I think I'll report my results back to the doc before the month-away appt. and begin adding things back in, one at a time, at least a week apart from one another.
Whew... I'm done. I'll try to get back in and do another update soon... maybe even post some foliage pics – it's wonderful this year!
Love to All, Jack
Replies
Jack, I\'m so glad you got good doctors. I sure wish I could find one like that. They sound wonderful. I\'m so sorry you have been in this crash for so long. Communicating takes a lot of energy. So, I totally get your silence. I have missed you, but I knew you were trying to pull your health back together. Hugs. Heather.
Congrats on finding MD\'s that are listening. That is great. Very sorry about the major \'dip\', but you did get some good information to share w/ MD\'s about that. I really hope you pull out of this soon. Soaking in and absorbing the Fall beauty in every way you can will help. Good luck and rest easy.
HUgs,
Denise
Thanks for the update Jack ~ I\'m glad you\'re still alive and kicking even if a bit slower than you would have liked. Good to have new doctors who are interested in helping you with the ME/CFS health issues that you have. I hope you get stabilized with meds and supplements that are effective for you ~ easier said than done, I know.
I\'m interested that the D-ribose was apparently working for you? I started taking it after seeing it recommended in Dr. Teitelbaum\'s book and asking my PCP who\'s treating my CFS about it and CoQ10. He said if I can afford them, it was worth giving them a try. I bought them both at Vitacost.com when they were having some special discounts on Vitacost brand supplements so they weren\'t very expensive.
I can\'t say that I\'ve noticed any improvement taking them but I\'ve been doing a lot more activities out of my apartment so I\'m a lot more tired. I don\'t know how tired I\'d feel without taking them ~ nothing to compare to I guess. I just know that I feel tired all the time which is the definition of this illness.
I\'m sorry that you needed to experience crashing from your \"supplement holiday\" ~ not a very positive outcome but I guess that shows that the supplements were doing something and weren\'t just placebos. Hang in there and thanks for getting back in contact with us here on DS! Hugs from Huelani your friend in Oregon
Aww, thanks to you, my dear friends. It\'s nice to be a little more on top of life. :-)
Love to All, Jack
It\'s all cool Jack . We\'re still all here.Take it easy and rest up my friend.Good to hear your new doc is more tuned in to CFS.That is a blessing for you.Hope you find a good combo with your supplements . I\'m taking time out from mine at present. I have only been looking at them all ( Oh yeah that really works well lol!!) and fed up with taking stuff . Maybe I will start it all again soon. I\'m a fried Di... Love to you Jack xo
Yes, Jack, I, too, get that. In fact, I just returned here after a 3-week hiatus. I\'m still trying to find the balance between working to build up stamina and over-doing. I think that will be an ever-lasting challenge. Sometimes I recognize that I\'m overdoing, but convince myself that having some fun or finishing a project will be worth the cost...sometimes it is and sometimes it isn\'t.
So great to hear you now have access to integrative medicine with doctors who actually work together. The surgeons I used to work for were meticulous about reviewing records and communicating with referral docs, so I was appalled to learn that is very rare. In my quest for healthcare, I have frequently taken the time required to fill out multiple-page health questionnaires and then the doctor does not take the time to look at it....so frustrating.
I travel to the Cancer Treatment Center of America in Tulsa for my cancer treatment and follow-up, There I have a whole team of caregivers and receive the highest standard in integrative care. They do what they can to help with my CFS symptoms, but unfortunately, my insurance will only pay for the cancer treatment (reluctantly) because the Center is out of network.
Thank you so much for the resources and the inspiration you provide. I hope you will be my friend.
Aww, thanks you guys. It\'s good to be back and *very* good to see you. \'Course I will, Eweneek.
Hugs, hugs, hugs.