My first appointment with KDM

[Daffodil]

@SuzieSam i think the issue is that people do not stick to treatments long enough. i dont blame them because it is so hard to know if you are on the right track with this disease and the treatments can be pretty difficult.

before DeMeirleir, i took antivirals for several years, thinking it would work if i just stuck with it but it didnt. this time around with DeMeirleir and the antibiotics, it did work. (meaning I am 45% better from being bedridden). its been 4 1/2 years so far on the treatment.

 

[dadouv47]

@adelheid55 I hope that your daughter is doing well now that she's through the "feeling worse to get better," stage. And that you can draw strength and hope from her success. I don't want to feel worse! I've adapted to this level of awful...

@dadouv47 do you mean it's tricky to get on the right treatment? Or tricky for your body to get on with healing? :thumbdown:

Mostly for the body to get on with healing, but yeah the right treatment can also be a factor ( there's unfortunately no magical pill for us )

 

[SuzieSam]

@adelheid55 I'm so sorry for your daughter's suffering. Has KDM been unable to help at all? My daughter has suffered with Fibromyalgia and Delayed Sleep Phase Disorder since age 9, and I make myself more ill caring for her. But I don't regret a minute!

She probably has ME too, but I never mention it. Fibro is something she might grow out of. ME seems more foreboding and permanent to her. She's 17. If I go to KDM, I'll take her with me.

The idea of her trying to go to college, then collapsing and ending up bed bound... Gotta avoid that.

 

[SuzieSam]

@Daffodil I'm so happy for you that you're out of bed and living life more now. So wonderful! I bet you couldn't believe it!

Yes, the difficulty of sticking to anti virals or antibiotics (Valentijn's thread on the IV method and side effects worried me). But I'd never get the IV here and can't leave for 3 months.

@justy I suppose going up an activity level is a good goal for treatment. From bedbound to housebound is pretty good. When I'm nailed in bed for 3 days with a migraine I'd give anything to be able to sit on the couch with a cup of tea and look out at the garden. And when I finally do, it's magic. Better than the beach in my healthy days. I'm bedbound today. I go in and out of bed days to half in bed. Depending on what I've done for my daughter.

@dadouv47 by the time I decide if I have the courage to do this for myself, there WILL be a magic pill for us!

 

[Daffodil]

@SuzieSam thanks
been sick since 22 so no children