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

[Jacque]

Good for you Jacque, enjoy!

Well my 5 days of more energy ended abruptly... suuuucks... I wanted to ask if you have been having hot flashes or sweating??? Just curious...

 

[Jacque]

Yes, I too have been in menopause for yearrrrs ... since hysterectomy at 32...so no stranger to hot flashes...if these are hot flashes then OMG... I literally break a sweat so bad my clothes get damp..and they last for about 10 min...then I find my self under blankets... Just wondering if this is a common experience...
I too am not concerned with every little thing...but these MELT DOWNS are yuuucky...and not normal... I am hopin they are temporary fevers of my immune system hunting down the bastards and KILLING them... Have felt really fluish all day again. Nodes in neck really tender again. 15 mo... will we turn the corner.... we sure deserve to.....

 

[Kati]

Nope, no hot flashes.

 

[Jacque]

Hmmm and it is not happening to Irene either.... so hmmmmmm??

 

[MishMash]

I get the hot spells, then cold sweats, knock out sick feelings you've accurately described. Over the 30 years I have had this illness i have associated them with the onset of the ragweed pollen season. Usually late summer to the end of fall. Then you get your first frost, and all the plants get stunned. Unfortunately, in winter all the molds start activating your defenses...and well, you're f***d again. There's no 'good time' of the year.

 

[Jacque]

You...are a hoot!! Are you on Rituxan??? Can't remember... but I never had these crrrrazy of melt downs until I got on the Rituxan... I can only guess it is altering my hormones some or...activating immune response... I usually feel my best in Fall. But livin in Georgia and all the vegetation and humidity...honestly I think I would DIE...

 

[Jacque]

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.

I was told by Sushi that she did see the interview with Dr. Kogelnik but I can't find it either....but did read something by Cort on front page saying more to come with Dr. Kogelnik...did you see that?? I had my first in fusion on Aug 6 the 2nd 2 weeks later...

 

[Jacque]

Sent an email to Dr. Kogelnik at 2 in the morning about these severe melt downs I am having... Like my body havin a hot flash X 2... I am no stranger to hot flashes... but these are full on sweating, clammy, episodes...followed by chilliness... Not the usual... Literally have to wash my pajamas after one day... GROSS...

He replied at 2:05 a.m. (what doctor does that?) I scolded him for being up so late cuz we needed him to be rested the next day ... he said it is the only time he gets anything done! A MAN ON A MISSION!!! Most docs would ask if my credit card was on file before writing me an email or picking up the phone to talk to me... He is not a greedy SOB...like soooo many I have seen in 35 years of illness..
Anyhooooow....back to the point... He said it was a good sign that my body was likely to respond to the Rituxan...esp with the 5 days of great energy...so I will will remain with fingers and toes crossed, and hair braided...

Don't forget to gaze it at the FULL BLUE MOON tonite!!! Supposed to be a time for manifesting and listening!! I can't wait!!! Have a LOT to ask for...and deserve....
XX to all...

 

[Sherlock]

Out in the world, the #1 cause of night sweats is infection. A less common cause is Non Hodgkins lymphoma, a cancer of the B cells. So your immune system sure seems to be responding. But I've never heard of day sweats.

In the Norwegian study, IIRC they attribute all the effects to the eventual loss of autoimmune antibodies, which typically takes several months. Your experiences are showing much earlier effects, which seems to mean that some other processes are going on. But maybe weeks or months down the road you might also get the effects that the Norwegians saw.

Can you keep your hair braided that long?

 

[dsdmom]

Thanks for sharing Jacque. I went through a couple of days last week of just being unbelievably hot myself...it was miserable! Last night I had night sweats, which are definitely listed as a side effect of rituxan but I hope they don't continue for too long. Hang in there!

 

[Marg]

Thanks for sharing Jacque. I went through a couple of days last week of just being unbelievably hot myself...it was miserable! Last night I had night sweats, which are definitely listed as a side effect of rituxan but I hope they don't continue for too long. Hang in there!

I remember reading that sweating can be the body making heat instead of energy. Yesterday a did quite a bit of work around the house..using a steam mop and vaccum. I felt okay but I was soaked. I have nt done that much work all at once in a long time. I had no PEM

 

[Jacque]

Out in the world, the #1 cause of night sweats is infection. A less common cause is Non Hodgkins lymphoma, a cancer of the B cells. So your immune system sure seems to be responding. But I've never heard of day sweats.

In the Norwegian study, IIRC they attribute all the effects to the eventual loss of autoimmune antibodies, which typically takes several months. Your experiences are showing much earlier effects, which seems to mean that some other processes are going on. But maybe weeks or months down the road you might also get the effects that the Norwegians saw.

Can you keep your hair braided that long?

I have done the night sweats too... (which are also a BIG symptom of Babesia...a co infection of Lyme)... but they day ones...are stickey wicked... lol I was in the store when I had one today...how EMBERRASING...
My question in all this mess Sherlock is once I supposedly lose all of these autoimmune antibodies...what is to stop em all from comin back...cuz what if it is Lyme? and I am not killin the INVADER to begin with... oh I dunno... I am sure that is all part of Dr. K's research... He is not at ALl negative about Lyme being the cause...just unsure what the heck is blowin out the immune system... In time hopefully they will know... Hey have you read Betrayal of the Brain??? That is another concern... BC that MD's theory is we with CFS/FM have gotten an infection that has damaged the control centers of the brain? Another 650million dollar question.
Hey what are you taking to sleep... This 4 and 5 am stuff is really getting RIDICULOUS...and I sleep till noon... Taking 2 lorazapam and 2 night time Tylenol...and not even that does it... geeeez

 

[Jacque]

I remember reading that sweating can be the body making heat instead of energy. Yesterday a did quite a bit of work around the house..using a steam mop and vaccum. I felt okay but I was soaked. I have nt done that much work all at once in a long time. I had no PEM

Wow...that is great tho that you are much more active... I too have been goin in spurts and other than pain I have not been getting the PEM... When I have these melt downs... I feel like my skin is hot to the touch... I am gonna take my temp next time (thanks Sherlock for tip) and see if my temp is zooming...

 

[maryb]

Jacque - the sweats are BAD sympathy on that one, hope they don't last.
Sherlock - so nights sweats may indicate infection? As I've had this symptom since getting ill I guess that is the case, they do go away occasionally and if I think back probably after taking a/biotics.

 

[peggy-sue]

I don't know if this is in any way relevant, but fever is one of the body's defences against infection.

If the bug likes being at the "normal" temperature of 37 degrees, a shift up a degree or so will stunt its growth.

 

[Sherlock]

I have done the night sweats too... (which are also a BIG symptom of Babesia...a co infection of Lyme)... but they day ones...are stickey wicked... lol I was in the store when I had one today...how EMBERRASING...
My question in all this mess Sherlock is once I supposedly lose all of these autoimmune antibodies...what is to stop em all from comin back...cuz what if it is Lyme? and I am not killin the INVADER to begin with... oh I dunno... I am sure that is all part of Dr. K's research... He is not at ALl negative about Lyme being the cause...just unsure what the heck is blowin out the immune system... In time hopefully they will know... Hey have you read Betrayal of the Brain??? That is another concern... BC that MD's theory is we with CFS/FM have gotten an infection that has damaged the control centers of the brain? Another 650million dollar question.
Hey what are you taking to sleep... This 4 and 5 am stuff is really getting RIDICULOUS...and I sleep till noon... Taking 2 lorazapam and 2 night time Tylenol...and not even that does it... geeeez

Hi, Jacque, that's insightful of you: even if all the B cells and memory B cells and plasma B cells all could be wiped out (which maybe all the cells in the marrow can't be wiped out anyway), then you're right, the body would just replenish the B cells from stem cells and then things would just start all over again when the immune system detects the invader anew. Well, that's a reason to give the RTX periodically. But everything is just speculation for now, certainly from me and even from the docs.

Not everybody with Lyme ends up with CFS, so to me the real issue is the immune dysfunction: sometimes too hot, sometimes too cold but never just right

I think that my insomnia if from histamine acting on the hypothalamus. Quercetin and diphenhydramine help. I think I even got more than 7 hours total sleep last night. I usually fall asleep easily, then get up 4 hours later at 4am. Exercise an hour before sleep helps me to stay asleep. Now this may sound unusual but I've also been taking baking soda for a few weeks and that seems to be helping on all fronts. I know I've been too acid.

 

[Sherlock]

Sherlock - so nights sweats may indicate infection? As I've had this symptom since getting ill I guess that is the case, they do go away occasionally and if I think back probably after taking a/biotics.

Well yes, anything with the immune system: infection or lymphoma/leukemia.

I've always perspired a lot throughout my whole life, which can be a sign of a high-histamine system. The funny thing is that after I got sick four years ago, the sun and heat didn't bother me as much. So I seem to be somewhat the opposite of you and Jacque in that regard, sweating less from the CFS, not more. Go figure

 

[Jacque]

Hi, Jacque, that's insightful of you: even if all the B cells and memory B cells and plasma B cells all could be wiped out (which maybe all the cells in the marrow can't be wiped out anyway), then you're right, the body would just replenish the B cells from stem cells and then things would just start all over again when the immune system detects the invader anew. Well, that's a reason to give the RTX periodically. But everything is just speculation for now, certainly from me and even from the docs.

Not everybody with Lyme ends up with CFS, so to me the real issue is the immune dysfunction: sometimes too hot, sometimes too cold but never just right

I think that my insomnia if from histamine acting on the hypothalamus. Quercetin and diphenhydramine help. I think I even got more than 7 hours total sleep last night. I usually fall asleep easily, then get up 4 hours later at 4am. Exercise an hour before sleep helps me to stay asleep. Now this may sound unusual but I've also been taking baking soda for a few weeks and that seems to be helping on all fronts. I know I've been too acid.

Sigh..............................I am such a black n white kinda person...and this grey...is.....crazy makin... I have been vertical again for the last 3 days and feelin better...other than the usual alien on my neck...grrr I am tryin not to think too far into the future..but I am fearful of getting some resemblence of life back only to fall flat on my ass again...

You can exercise??? I am impressed... I simply cannot... my muscles the next day are like rigamortis? ms? And as far as the Baking Soda... makes sense to me...knowing I just got home from Walmart and bought a HUGE box of Alkaseltzer plus...cuz it helps me to sleep better... I am also acidic TERRIBLY...

Thanks for all of your info! I appreciate it! Jac

 

[Jacque]

Jacque - the sweats are BAD sympathy on that one, hope they don't last.
Sherlock - so nights sweats may indicate infection? As I've had this symptom since getting ill I guess that is the case, they do go away occasionally and if I think back probably after taking a/biotics.

Well the Abx helping says a LOT... Our bodies tell us what we need to know ... if we just listen I guess.....

 

[Jacque]

I remember reading that sweating can be the body making heat instead of energy. Yesterday a did quite a bit of work around the house..using a steam mop and vaccum. I felt okay but I was soaked. I have nt done that much work all at once in a long time. I had no PEM

Hey you know... now when I have one I just say... DIE SUCKERS!!!! My immune system is doing sumthin...so yayyyy