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

[Jacque]

Ok... I hope I don't regret posting this - knowing how quickly things can change with us who suffer - but I also know we can all use "good" news and many have told me to post how I am feeling on the Rituxan.

First of all I want to restate that the infusions were NOT bad at all... I was really "scared" terribly to do such drastic therapy...but other than the few days of increase in symptoms, it was really quite simple. They just felt like days where a storm was rolling in

So I am 2 weeks past 2nd infusion and I have 4 more to go. I do believe, according to what is currently going on that I am going to be a responder... (fingers and toes are crossed - and I might braid my hair today )

Prior to Rituxan treatment: In fetal position on the couch 80% of the day, WEAK, No energy, Could not stand for long, rarely left the house, bone and muscle pain 8-9, Neck pain 8-9, headaches, feeling not long for this world. TERMINAL FLU....

After first infusion I noticed I was "vertical" a LOT more and just felt happier - more optimistic. (maybe just bc I met Dr. Kogelnik?)

Now I will update you on what has happened post 2nd infusion. (and bear in mind I have been ill for 35 years and there is NO placebo in this girl - either I feel better or I don't - and it nothing usually makes any diff)

I live on the Central Coast of California...and the Humpback whales are migrating up the coast.

Thursday night I told my bf I wanted to go see them. We sat on the end of the pier in a restaurant, ate dinner, I had a Blood Mary (bad bad girl), watched the whales swimming in the bay, along with hundreds seals, thousands of pelicans, and dolphins... I thought I had died for a minute cuz I was drinking alcohol, smiling, out in public, and watching nature... Whooo Hoooo and then it dawned on me how very long it had been since I had done that... MONTHS! Wow... WHAT??

We continued to watch the whales come up close to the pier... and came home, and my neck pain was OFF the hook...but I was happy.

Friday... UP all day...Groomed one of my Shihtzus! Went out to Steak house with friends, last minute! Had a fun night!! WHAT??

Saturday - UP all day... Went to Drive Inn with my Daughter and two grandsons....and get this ... I watched BOTH movies... WHAT???

Sunday - Having a Clam Festival here in town... So I went down with friend to go to all of the booths and do some shopping - and we all had a BEER.(bad bad girl)... We walked around for about 2 hours, and even did a little dancing...WHAT??? Then I got home ... Did dishes... and saw a motor home I was interested in on Craigs List...so drove 30 minutes to go look at it... Want to do some camping with my Grandsons...

Ok... So it is Monday morning and I am so excited to tackle my house - as I have gotten behind on so many things... Gotta Groom the other Shihtzu! Plan to clean out the inside of my Jeep...Looks like someone has been living in there... and I don't know what I am gonna cook for dinner...hmmmm?

My BF- is walking around with a smile on his face , lets just leave it at that.... and he commented last night that he likes havin his fun GF back....but man I was less expensive when I was sick....and talked a lot less... lol

I know these things that I write about are pretty mundane... But my point is.... 6 weeks ago... I was in the fetal position on the couch, said NO to every offer - even to dinner - cuz I didn't even have the energy to get dressed or be vertical that long...

The INTENSE FLU LIKE SYMPTOMS have decreased 80% or more... I still have terrible spine/neck pain and am praying in time that goes too!!! I feel like I have an Alien (like the Sjogorney? Weaver movie on my neck - spitting venom down my spine)...I want that sucker DEAD!!

Well... I had all these plans and my daughter just texted me and asked if I am up for a hike???? Ummmm YEP..... So Gotta go get on my hikin boots - guess house,car, and dog will have to wait till tomorrow!

Geee.... My couch is missing me...

Am I having a RESPONSE to Rituxan... or a wonderful sudden decrease in symptoms?? TIME will tell me that....so I will have to wait... but for NOW... I'm goin hikin....

So ..... better run..... Big hugs to all of you..... WE are ALL gonna get a LIFE.... we are too determined NOT to!!

Jac

 

[Seven7]

So Happy for u!!! Keep us posted.

 

[Sushi]

!!

 

[penny]

Wonderful!

 

[Glynis Steele]

Wow!

 

[L'engle]

This is great! cognitive changes? Did you have brain fog before/now? can you handle more mental exertion than before? have a good time!

 

[Tito]

I don't know you but I'm delighted for you!

 

[Kati]

Good for you Jacque, enjoy!

 

[alex3619]

When Sir Edmund Hillary finally reached the summit of Mt. Everest he must have felt extreme exhilaration, achieving the seemingly impossible. It was a milestone in mountain climbing history. Those who are pioneering Rituximab are doing the same. The difference is ME or CFS is our unclimbable mountain.

Oh, Jacque, I am a little jealous that you can drink alcohol again, bad girl or not. I am delighted you appear to be responding. Whatever is going on, whether you are a responder or not, you give us hope.

Best wishes, Alex

 

[Sherlock]

Hi, Jacque. To me, the thing that really stood out about your experience so far was how the long standing infection was suddenly cleared up. That is extremely unlikely to be the result of any placebo or other psychological effect. I hope that you told that experience to Kogelnik. It stands out because it doesn't fit with the two main theories: that the RTX quenches an overactive immune system (B cells over stimulating T cells), or that the RTX suppresses autoimmune antibodies. With Kogelnik being an ID doc, I'd guess that he'd be very interested in how the RTX seems to have unexpectedly revved up your system to defeat the bacterial infection.

The other thing that stands out is how your relief of symptoms comes pretty fast, which also goes against the autoimmune antibody theory. (I know that Kogelnik was not believing so much in the antibody theory anyway.)

The reversal of your longstanding intolerance to alcohol deserves some analyzing That's very unexpected, to be tying in alcohol related enzymes to immune system changes. I hope you also have relayed that change to Kogelnik... that's a clue to something.

Has your body temperature changed? Sleeping patterns?

I can just imagine if the Norwegian subjects had been relaying their experiences as you are doing here, how greatly informative that would have been - instead, all we have is summary statistics.

Btw, you also have talked about increased bone pain. If I recall correctly, that's everywhere and not just in the neck. Did you know that bone pain can be caused by Lyme disease? I know you've said that you think you have Lyme.

Maybe the long standing infection and the bone pain both involved some organism (such as Lyme or some virus) that hides inside cells, and as the RTX killed off your B cells that somehow took away signalling inhibition of Natural Killer Cells or even CD8+ Killer T Cells.

This is very interesting, keep up the good work in reporting

 

[Sherlock]

Now how would the killing off of B cells tie in to reversing intolerance to alcohol? I don't know, but I'll mention that pain in lymph nodes after drinking alcohol can be a sign of Hodgkin's Lymphoma, which is a cancer of B cells. No one knows why alcohol causes that effect.

 

[Sherlock]

For those not familiar with Dr. Kogelnik, here is one part of an interview with him:

I think that's the part that relates most to clinical trials, btw. Also, here is his institute:
http://www.openmedicineinstitute.org/About.html

Jacque, could you say again when your first RTX infusion was? Was it recent, as I am thinking it was? And wasn't Kogelnik supposed to be interviewed for this site? I don't see it here.

Here's another Kogelnik thread:
http://forums.phoenixrising.me/index.php?threads/rituximab-in-the-usa-dr-kogelnik.14024/
which leads to this blog, which is active and from "Kati", whose RTX Tx began in January:
http://bikechick06.blogspot.com/2012_08_01_archive.html

Lots to read through there.

 

[jeffrez]

Wow, that is such a dramatic difference! Hoping for more positive results for you - so glad to hear when even one person improves! It really gives a lot of hope, TY so much.

 

[MishMash]

Jacque,
It's too bad that Dr. Kogelnik didn't test your IL-6 or TNF-a, since they are produced by B cells and have been widely implicated in the generation of autoimmune illness. Previous research showed that when the cells were killed, these cytokines went down, and the level of inflammmation went down.

That's great news though! You are our Braveheart. Go forth and slay the beast!

 

[dsdmom]

Yay! Thanks for sharing.

 

[IreneF]

I had a similar experience during July, but have spent most of August in bed or on the couch. What Dr. K told me was that improvement is "a day here and a day there". The most significant change to me was that I could rest and *recover*. Some of my symptoms did not ameliorate, such as POTS. So enjoy it while you can, but please don't overdo it.

Where do you live that you can see the whale migration from land? It's something I've wanted to see for years. Here (SF) one can go on whale-watching cruises, but they are iffy propositions.

Irene

 

[Waverunner]

The great thing is that your improvement continued over several days now. This cannot be achieved through a placebo effect because the body would have used up all of its reserves after the first or second day and you would have come down crashing but you didn't. Anyways, your story made my day, finally there is hope again.

 

[Sherlock]

Maybe the long standing infection and the bone pain both involved some organism (such as Lyme or some virus) that hides inside cells, and as the RTX killed off your B cells that somehow took away signalling inhibition of Natural Killer Cells or even CD8+ Killer T Cells.

I have to correct myself: While NKs (and Killer T cells and Natural Killer T cells) are usually thought of as killing off the body's own cells (i.e., infected cells or else cancerous cells), NKs also have in their arsenal the chemicals called defensins which can directly kill bacteria that are not inside cells - in one method simply by making holes in them.

Now lookee here, at the blood test results of 'bikechick' Kati:
http://bikechick06.blogspot.com/2012/06/week-11-wrap-up.html

As her serum B cells went to zero, her NKs went from 140 to 413. If Jacque underwent the same apparent compensation in increased NK cell number, then it seems reasonable to assume that the NKs killed off the long standing infection and also had other effects. The increased number of NKs could be putting out a lot of extra lymphokines, which might eventually create the usual overly-inflamed symptoms. IIRC, the NKs' alpha defensins also result in reduced adrenal output.

 

[Jacque]

Well Sherlock you understand this crrrazy immune system a lot better than I do...and I love it that you are here... I am guessing that I will get blood work on my next Rituxan infusion... Sounds like from what you wrote our NK's are what is causing a lot of our inflammation? I know the NK calls are Dr. K's defining marker he looks for... Mine are way low... can't remember right now... as if I have AIDS...
Had 5 days of more energy - got out of the house all 5 days (still had BAD pain)...but now back the couch with raging flu like symptoms...bone pain, muscle pain, burning, spine/neck BAD, uggggggh..... well at least I got to have a little fun ... But now of course everyone wants to know why I am back DOWN... ugh
So I guess my B Cells are now bein replenished (starts around 2 weeks) and what ever is causing my misery is now returning... CRAP..
Well at least I know we are on the right track....?? sigh...grumble....

 

[Jacque]

I don't know how I missed this message... My first infusion was July 23... 2nd was Aug 7th.... So I am 3 weeks post 2nd infusion...and had a good 5 day window in my 2nd week where I didn't feel so HAMMERED... Will I ever crawl out of this Abyss...?
Feel fluish today...tender nodes in neck... Even tho my energy level got better I have been hittin the pain killers more heavily...esp at night...It is taking two Norco at night to get the burning in my spine down to where I can sleep.... Been taking at least 6 a day... I will really know when I am gettin better when that # starts to drop...
Also havin a nice little HSV outbreak... so I guess all hell is breakin loose....