GOOD things happening!! Am I a responder???

[ThatBloke]

... it is good stuff... it is giving me my life back...day by day... I am so excited... BIG changes... I will write about them soon.

I'm so glad it is working for you - even if in ups and downs .
Please do keep us posted on how you are going with it. There are so few glimmers of hope in the ME/CFS landscape that this little ray of possibility is wonderful, even for those of us just reading about it.

 

[Starfive]

Thanks so much for sharing your experience. I am fairly new to this illness, only four years, yet can really share with you so many of the trying symptoms... the pain that one cannot live with, the burning, the hot flashes and chills, the bed and the sofa. The brain down the tubes and no energy to the core. Up till 4am as well...

Just reading about your up happy week gave me hope!

 

[jimells]

(The KillerT Cells proliferate inside nodes, then travel out into the body. They sort of frisk other cells that they encounter. If they determine that any cell has a virus inside of it, then they kill the cell.)

I love that image! Reminds me of the cops in New York City...

Jacque - Is your party open to anybody? Let's tie our couches to the back of a pickup and drag 'em down the road! At least we'd be outside doing something fun...

p.s. I hope that stuff starts working for you again.

 

[GracieJ]

It's okay to sit on the pity potty.... just be sure to flush when you are done!

 

[ThatBloke]

I recently had two weeks of being off this friggin couch and I LOVED it... .... I was back to having a very clean house, car, laundry basket, and was even cooking and going to town a few times a week...

And then .... the crap came a creeeeepin back in....

Sounds kinda like a classic case of doing too much too soon. I used to do this every time I had a "good" spell until I learned to take it easy (well, sometimes) and simply enjoy feeling not-so-sick rather than trying to run around and do a bunch of stuff.
Hope you can build the patience to hang in there next time and take it easy, let the body rebuild itself slowly.
You'll get there.

 

[Jacque]

I know... looking back I have been doing this for at least 20 years... Gotta get everything done when things get even a little better cuz you know the next crash is just around the corner... What a life..... thanks for advice!!

 

[Jacque]

I love that image! Reminds me of the cops in New York City...

Jacque - Is your party open to anybody? Let's tie our couches to the back of a pickup and drag 'em down the road! At least we'd be outside doing something fun...

p.s. I hope that stuff starts working for you again.

Now that sounds like my kinda of party....could we make a few cocktails too - I mean since we are going to attempt to have some fun and all... uggggh Thanks for the great laugh!!!

 

[Jacque]

It's okay to sit on the pity potty.... just be sure to flush when you are done!

FLUSHED... That dramatic return of symptoms really affected me emotionally for some weird reason... Maybe just cuz I'm old n tired......... sigh

 

[GcMAF Australia]

Jacque
i just want to say how much I / we care.
GcMAF

 

[Rooney]

I know... looking back I have been doing this for at least 20 years... Gotta get everything done when things get even a little better cuz you know the next crash is just around the corner... What a life..... thanks for advice!!

Jacque,
As pain is a major problem for you, I wanted to ask if you attribute any of it to this treatment? With my pitiful brian I haven't understood about new pain issues with other patients in the pilot study as well. I hate that for you. Really.

 

[Fredrik]

Jacque: Hi. How did u manage to get rituximab? Private doctor or through the public health system?

 

[Sushi]

Jacque: Hi. How did u manage to get rituximab? Private doctor or through the public health system?

I don't know when Jacque will be here again, so....She is a patient of Dr. Kogelnik near San Francisco. He has a number of patients on rituximab.

Sushi

 

[Fredrik]

Thanks Sushi!
Okey, so he is a private doctor? Have you any idea what the price for this is?
I live in Norway and its almost impossible to get it here, so I am thinking about going to US or another country to get it. A country in Europe would be best, since its closer. Does anyone know about where I can do this?

 

[Sushi]

Thanks Sushi!
Okey, so he is a private doctor? Have you any idea what the price for this is?
I live in Norway and its almost impossible to get it here, so I am thinking about going to US or something to get it.

Hi Fredrik,

The information about treatment with rituximab is scattered among several threads but I think you will find a lot of it here: http://forums.phoenixrising.me/index.php?threads/rituximab-discussion.18028/

The price is discussed, but I think his patients are just paying for infusion costs and that the drug itself is being paid for by some other party--I forget the details. It isn't exactly a clinical trial, but his patients are not paying for the drug themselves. You might send a "conversation" to Jacque to get the details.

I think you would have to live in California for a year to take rituximab with Dr. Kogelnik, though some fly in for each infusion. Here is his website: http://www.openmedicineinstitute.org/Welcome.html

And here is an interview with him:

Best wishes,
Sushi

 

[Fredrik]

Thank you Sushi
In that thread they say about 3000$ for each dose. But, that u need one dose every 3month...
Interesting movie! I've read about a few here in Norway who got the treatment in the study, "the symptoms were gone in a few days" one women said. I've sent a conversation message to Jacque

 

[Jacque]

No the Rituxan has not "created" any new pain for me... Pain has always been a HUGE issue for me. Nerve pain everywhere, bone pain and tenderness, muscle pain. The only thing that does not hurt is my hair and nose!!

 

[Jacque]

Hi Friends!
Well.... I am definately off the Pity Potty... and yes I DID flush! lol All of last week was pretty much another ride on the couch. Kept feelin like I was "comin down" with a cold or sumthin...but nothing ever completely manifested.

Nodes in neck are not as painful and I am back to vertical a lot of the time. But honestly I feel like Doo Doo... I so badly want to be positive and be a ray of hope for those of you watching the studies on Rituxan. I have only had 2 infusions and did have a few weeks where I didn't feel so "fluish"... have 4 more infusions to go over next 13 mo... So will keep you updated.

Currently... not much change except I am vertical a lot more of the time. Everything still hurts... except my hair and nose that is!
Warmly, Jacque

 

[Sherlock]

In the Norwegian study, Figure 3 tracks the symptoms in individual patients, every 2 weeks. There's a lot of variance. Yours seems maybe closest to G.

Thanks for posting an update.

 

[GracieJ]

FLUSHED... That dramatic return of symptoms really affected me emotionally for some weird reason... Maybe just cuz I'm old n tired......... sigh

More likely it is just stinking disappointing, emotional prison by itself.

Glad you are doing better this week. Hopefully things will even out to a better forward progression, gradual and steady improvement without the spikes, as fun as they are for a few days.

 

[Rooney]

Jacque,
As you may already understand from being such a long-term patient, you are not alone in your emotions with an improvement and a setback. It's very upsetting for us.

I am glad for you that the drug has not brought on new side effects.
All the best, Rooney