Wednesday, July 1, 2009


After really thinking about it I've decided not to go private. I'll deal with the other stuff in some other way or at some future time maybe I will go private. It doesn't quite seem fair to finally be experiencing some improvements and then limit who can see it. I'm also aware that it's a pain to have to sign in to see a blog especially when one is having a bad me/cfs day.

I'm continuing to experience improvements. For the past two years any improvement I've had was short lived and limited to a day or so. This run has lasted twelve days now. I'm a bit more tired today than I have been but I've also been under a lot of stress which is never good for us.

So, I decided to seek out therapy. I figure it can help me continue to make the necessary life style changes as well as help me develop tools to be true to myself. I also want to come home to myself.

I spent all day last Thursday researching therapists who were listed on my insurance plan. I finally settled on one who sounded great, had a great web page, and good training. I had first session on Monday. Over the phone she told me she had worked with cfs patients in the past. You certainly couldn't tell during our session. She actually psychologized this illness! She actually said I developed my symptoms due to psychological reasons!!!! I could not believe it. She was surprised I wasn't working. As if I could. In hindsight I realize she has no knowledge of this illness and thinks its just fatigue. I tried my best to educate her but I was just a patient and she clearly was having none of it. I will not do therapy with her. At some point I want to put together a packet of information to give to doctor's, therapist, or anyone else so they can become educated on this. I can easily go off on a rant here. The other part that is a bummer is I only have 20 sessions per year and I used one up on her. It was a good lesson though. Next time I will ask the potential therapist how they view cfs.

Tomorrow I have my Tilt Table Test. I'm a little nervous,mostly because I don't want to crash afterwards. I've really been enjoying these improvements.

My last day of Valcyte will be July 19th. I can't believe I have only 19 days left. My doctor will put me on a new immune modulator once I finish Valcyte. Hopefully its out by now.

I haven't been able to watch the rest of the Gupta Retraining DVD's because the computer that has the DVD player is not working at all. I'm disappointed about it because the stuff I've learned so far has been helpful. It's a nice adjunct to Valcyte and the Methylation Protocol.

Has anyone else had the Tilt Table Test? If so is there anything you recommend for recovering afterwards?

Peace and Wellness to All


Jozephine said...

I'm really keen, as I'm sure everyone else is, to know what you think has helped you improve. It's brilliant news.

You're right, therapy doesn't make the CFS go away but it does give you a much bigger toolbox. Wouldn't it be great if we could just have a course of CBT and it would all magically melt away?

I'm glad you are keeping your blog public. You are a good advocate for us.

Anonymous said...

I took the tilt table test this past February for my disability claim (I didn't pass out, but came close). I felt like I'd been through an ordeal and felt weak afterwards, but I treated it just like any other activity: I called it a day and went straight to bed. I didn't have a crash the next day, but made sure I got extra rest. (fyi, this month's page has general tips on managing orthostatic intolerance, like staying hydrated.)

Sorry you had to go through that experience with the therapist. We can't expect everyone to know a lot about the illness, but the worst are so-called professionals who THINK they know about it but don't. I had a similar experience with a doctor who believed that CFS was psychological and that increasing my antidepressant dosage would cure me (if only!)...not only that, but when I expressed concern about increasing the dosage, he outright told me I should look for another doctor. I told him that I was never coming back.

I find that talking to a disinterested third party in the form of therapy helps. I don't think I'll continue it indefinitely, but for now I like to think of it as something that is helping me become more spiritually functional.

Good luck with everything,

Treya said...

That's terrible about that therapist. I had an irish lady email me through my blog after having a similar experience. She was devastated about it as she had just been diagnosed and was looking for some help.

I was very lucky that the first therapist I went to was great with a lot of experience with ME/CFS and took it very seriously. My doctor recommended her. Perhaps if you ask your doctor to recommend someone?? I found therapy hugely helpful...

It's so great to hear you are doing so good at the moment.

Renee said...

Great news with how you feel...hoping for you no side effects with the tilt test. I have never done one.
I, too, am very happy you are keeping your blog open...we need it.
I have heard of others who have experienced what you have. I went to a medical doctor once who said he understood CFS/ME and his web site was wonderful..I got there after driving 11 hrs and he told me gthere is no such thing as CFS! Gave me 3 powerful drugs and I tried oxicotine...yep...and was so ill and went through terrible withdrawl. I never went back. I think Dr. have great value, but many don't know enough and also do'nt seem willing to learn much.

Laurel said...

Hi, there,

I'm new here, and am so glad to hear of someone seeing improvements! I'm glad, too, that you will be keeping your blog public for awhile longer as you describe your journey to recovery. I wonder if you attribute these improvements primarily to the Valcyte, the methylation protocol, the amygdala retraining or a combination of all three? I guess it would be hard to decipher which has had the most benefit.

Best of luck on the tilt table test! Hope it leads to even more answers and solutions for you.

Sue Jackson said...

Hi, Terri -

I'm just catching up after my long vacation. So glad to hear you've had some improvement finally! And of course, I'm dying to hear how the tilt table test went. Sorry I wasn't here to tell you before, but lots of salt and fluids afterward (even IV saline if possible) can help with the OI effects. I hope that fact that you haven't posted since then doesn't mean you crashed badly, though it is to be expected. Just remember that the test results will likely lead to some treatments - treating OI/NMH/POTS can be very, very effective.

So sorry to hear about that awful therapist. All I can say is don't give up! I found a wonderful psychologist at the end of my first year of illness. She specialized in chronic illness and actually has a grown son with CFS! It was immensely helpful tome to be able to talk about the emotional side of CFS with someone who understood. I hope you find someone just as good.


Aviva said...

Wow. I just found you, so I'm very glad you didn't go private! Although I understand being unwilling to share every little detail with total strangers.

You and I have such similar symptoms, from what I can tell so far reading your blog. I even have the POTS symptoms with an equivocal tilt table test. I don't have a CFS diagnosis, but I think there's a good chance it's what I've got. My docs seem focused on the connective tissue autoimmune disease family, but I don't have a definite diagnosis there either. And hey, I got sick at almost the exact same time as you, but I fainted in Target in early July 2007, not a restaurant.

Um, just wanted to suggest you contact your insurance company and complain about how the therapist misrepresented herself. Depending on your insurance company, they might agree to waive counting that as one of your 20 sessions and count it as an introductory interview. I had a similar problem with a therapist I saw early in my illness. She claimed to have treated people with chronic fatigue and chronic pain, but during my visit, told me it was all in my head and I just needed to get out more and exercise. Sigh. I did find someone somewhat better, but didn't find myself getting anywhere with her and the sessions exhausted me and made me flare, so I quit. I like the idea of therapy, but I don't know how to make it work with my mystery illness.