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

Jacque

Senior Member
Messages
424
Location
USA - California
made me laugh again, Jaq. Who would have thought that reading on a CFS group could be entertaining :D

swelling from sodium? are you on a corticosteroid like cortisone or prednisone? taking diuretics or even celery seed to counter edema? (I don't have any bad effects from sodium)

Baking soda is taken even by some 'normal' exercises to counter the buildup of lactic acid from exercising. I'll let you know how that works out.

I did take some at 4am insomnia time last night, but it didn't seem to have any extra effect that way. But still, I have been getting 4 + 3 hours since starting it. I've also been taking lots of magnesium again, but months ago lots of magnesium alone (without the baking soda) didn't help with insomnia. Maybe the benefit even comes from baking soda + magnesium?

I did look into the aluminum angle, and so I called Bob's Red Mill. They seem to have started the alarm by putting 'aluminum free' on their boxes. They told me that they don't think anybody's baking soda has added aluminum anymore. It used to be added by some for for anti-caking, but no longer. Bob's Red Mill also has taken the "no aluminum" off their box and replaced it with "all natural". They say that there is always a trace amount in the ground when they mine it (most other companies manufacture their baking soda).

So I just buy the regular baking soda.

But in some brands, baking powder often has aluminum right on the label as an ingredient.

Ohhh and BTW the Melt Downs are done for now... Just a few regular power surges but nothing to write home about.... soooo interesting!!
 

Jacque

Senior Member
Messages
424
Location
USA - California
Well I hesitate posting cuz last time I posted how well I was doing I crashed the next day:mad:.. But .. I just have to write about what is goin ON!!!

I am no longer havin the major sweats... just a few warm flashes now and then...

But amazing things are happening... I just browsed through the last two weeks of my notes and holy moly... I only spent 2 of those days on the couch...!!!

Prior to starting Rituxan - I could not drive myself, was on the couch 80% of of the time, SEVERE flu like symptoms, "out of body" feeling, dizzy and lightheaded, severe muscle and joint pain, entire spine burns, and severe weakness.

I am now driving everywhere I want to go and don't even think about it...I am BACK in my body, no longer dizzy and weak... Muscle and joint pain have decreased... but still there along with spine pain... but I would say pain is down ummm 25%... GET THIS... I was watchin TV the other night (I am still up till 3am:confused: and I saw this neat exercise machine...and I bought the damn thing!!!!!!!!!!!!!!!!!!!!!!!!! WTH??? I just wish you knew how HUGE that is for me... I could barely get dressed and cook dinner ... let alone think about possibly being able to exercise... I hope I am able to do it... Stay tuned on that one.. But so what.. It is HUGE that I even picked up the phone and purchased it!!!

I am still having to take 4-6 Norco a day for pain and am hoping that I am someday able to decrease it...

In the last week I shampooed my rugs, mopped the floor, groomed both of my Shitzus - ugh, detailed the inside of my jeep, doing outside tomorrow, house is clean, dinners cooked, sold my motorhome and cleaned the whole thing out, been on a few outings, meals out, and today after detailing my jeep and being UP all day and working...I decided i wanted to take Sugar n Spice for a walk on the beach..........................

Ok............Sumthin GREAT goin on around here....and like I said I may crash this week but I am soaking up this new found "life force" like a sponge...and not taking one minute for granted!

I am obviously a "responder" ... so we will see what the future holds... Maybe after 35 years of suffering it is my turn to LIVE now...(where is the happy face with tears flowing)? Most people would just laugh at how excited I am to be mopping my floors, and walking on a beach...

But.............. you ALL.... GET IT!!! There is hope for all of us.... They are on to something... Is it the cure? No one knows at this point but my body says they are ON to something!!!

Stay Strong My Friends!!!
 

Jacque

Senior Member
Messages
424
Location
USA - California
: .... ) I am crying happy tears after writing that... It was as If putting it into words made it REAL... you know how the days flow together and you don't even realize what you are really doing??? I just re read it...so may mistakes and typos...got excited writing it I guess.. lol WONDER AND JOY!!! I do get that FEAR crap sneak in saying "how long is this gonna last etc" and I quickly go back to being in GRATITUDE mode for the moment!!!
 

GracieJ

Senior Member
Messages
772
Location
Utah
I wore out just reading! Um, what else are they slipping you?? lol Keep it going! Wonderful news.

Any way you'd come detail my little beater car now? It just isn't happening.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Im happy for you :balloons: but also scared for you and how much you are chosing to "suddenly do" while your body STILL has a lot of healing to do.....

I hope you dont do to much and crash and loose this opportunately to just keep on healing... Make sure you are still staying within the new limits. Sometimes it can be wise to be testing out new limits slowly.

best luck.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Wow, Jac, you are the champ. If the Norwegians had you in their pilot study, I think they'd have come up with a different theory than the one that they did.

I hope that you're getting extra rest to help you get over the extra activity.

What exercise machine did you buy? :D
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Wha


What is so daaang funny Sherlock... my tons of questions.. No I am not on Steroids... I just swell up like crazy when I do baking soda... I have fluid retention issues and POTS also so it is just me... Yes I use Bobs too... so GET THIS... I ordered a damn exercise machine thingey off the TV last night!! WHAAAAAT????? Now will I be able to do it is another questions... but Sherlock something is happening. 2 months ago I could not drive myself most of the time, face down on couch, felt OUT of my body - disconnected - like my soul was trying to leave ... is the best way I can describe it... Today I mopped and scrubbed my floors. Yest I shampooed the carpet and made dinner... Today I MADE myself sit down... Before if I stood up longer than 30 min I felt like I was gonna pass out. I did have a migraine last Sunday..that sucked...don't know where those come from.. There is no common trigger I can point at... just my chopped up neck I guess. What type of exercise do you do...? I am not working right now...but the company I do work for has a patented exercise bar that many athletes use to stop lactic acid from building up...and they are yummy... They even have and Access drink. If you go to www.melaleuca.com and just put ACCESS BARS you can read about them online... They DO work... And if you scream at me for trying to sell you something ... I won't talk to you again ...so there!!! I just read what are tryin to accomplish...and thought your Sherlock brain might be interested in the patent and what the bar does. So you notice what else I have noticed some GREAT wonder laughing attacks... feelin like my old goofy self - and it feels so good to laugh like that again... Now get this... My fingernails are all grown out....hmmmmmmmm???? I would pick and pick at them just down to the quick... So figure that one out.. Less anxious? Kinda weird.... Must be more calm. Just thought you'd find that interesting... Hugs.
It's funny to me when you say detective, because without insurance the only avenues that I have are the observing and logical deductions. :)

Before if I stood up longer than 30 min I felt like I was gonna pass out
It's surprising to me that you're even doing better with the OI. I remember you'd said that you gained some weight - maybe if a lot of that was water weight that'd explain being better able to stand - you know, the increased blood volume.

My OI and dizziness was never really bad - at my worst I would have to sit my way down the stairs for fear of pitching headfirst down the steps, but that wasn't usual.

Exercise? I do everything now. Run, jump, lift, play.
I took a quick look at the Access Bars - with CLA - but I've never had to lose weight - I think most high-histamine people are probably that way.

Less anxious? That's another unexpected thing, AFAIK. It seems the immune system can affect anything and everything - maybe one day the pain will get better, too. Best wishes for you.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Ohhh and BTW the Melt Downs are done for now... Just a few regular power surges but nothing to write home about.... soooo interesting!!
Interesting is right! :)

After having studied the immune system for some time, here's how I see it all: imagine a huge cage, with lots and lots of chimpanzees and monkeys of all kinds inside. Some have big mallets, used for bashing invaders that come in the cage - but sometimes they hit their own or each others' toes. Besides that, they spend all day writing down messages on paper, then folding the messages into paper airplanes and shooting them at each other across the cage. The messages can tend to get each other all stirred up, and the all-around bashing increases.

It seems that Rituxan has managed to really cut down on the paper airplane traffic and with everything being calmer, normal existence can go on.

Anyway, that's that's the most scientific view that I've come up with :D:D
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
So Dr. K is pretty impressive right Sherlock? Yet humble and down to earth and CARES.... And yes Tia 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.
yep, he seems to be innately likeable
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
I am also crying happy tears for you..............it must be such a HUGE relief after feeling like death warmed over for so long. I am so happy for you! This calls for a group hug! Reaching out over the air-waves and giving you one.
 

Jacque

Senior Member
Messages
424
Location
USA - California
Interesting is right! :)

After having studied the immune system for some time, here's how I see it all: imagine a huge cage, with lots and lots of chimpanzees and monkeys of all kinds inside. Some have big mallets, used for bashing invaders that come in the cage - but sometimes they hit their own or each others' toes. Besides that, they spend all day writing down messages on paper, then folding the messages into paper airplanes and shooting them at each other across the cage. The messages can tend to get each other all stirred up, and the all-around bashing increases.

It seems that Rituxan has managed to really cut down on the paper airplane traffic and with everything being calmer, normal existence can go on.

Anyway, that's that's the most scientific view that I've come up with :D:D
Friggin LOVE it!!!
 

Jacque

Senior Member
Messages
424
Location
USA - California
It's funny to me when you say detective, because without insurance the only avenues that I have are the observing and logical deductions. :)


It's surprising to me that you're even doing better with the OI. I remember you'd said that you gained some weight - maybe if a lot of that was water weight that'd explain being better able to stand - you know, the increased blood volume.

My OI and dizziness was never really bad - at my worst I would have to sit my way down the stairs for fear of pitching headfirst down the steps, but that wasn't usual.

Exercise? I do everything now. Run, jump, lift, play.
I took a quick look at the Access Bars - with CLA - but I've never had to lose weight - I think most high-histamine people are probably that way.

Less anxious? That's another unexpected thing, AFAIK. It seems the immune system can affect anything and everything - maybe one day the pain will get better, too. Best wishes for you.
You know not that you say it ... I do feel very fluid retentionish.... :) I love makin up my own words... My legs feel swollen and I just feel FAT...and have only gained 5 lbs... the 5 that I lost when I thought I was on my way out of this world... hmmm I think it is water... My pants are tight and I just feel blumpy... with actually it about 6-7 lbs... I tend to carry a lot of fluid in my legs anyway but lately I just feel uncomfortable... Been thinkin about maybe tryin that drug that is mentioned for this...fluid balancing problem... Starts with an F... obviously my cognitive is not all that great huh...
And in re to the Access bars yes they are used by peeps to lose wt... but mainly by athletic types and competitive ahtletes for that extra edge... He with the most glucose and least lactic acid wins...I guess.... There is also an Access drink and that is what I will be using bf my exercise sessions with my new fang dangled xrcise thingey I bought on TV... I think it is called Access Blast? I get the chocolate and it is nummmmy. Please don't think I am trying ot sell you sumthin... I am not even workin my biz right now...and am soooo BLESSED that is what pays my bills bc thank GOD I built residual... I have not worked in 2 stinkin years...:( You could order it from someone else... I would not be offended... So please don't think that I am trying to SELL to you... I just know you would LOVE the stuff...if you tried it... EVERYONE I have ever turned on to it does... And I cannnoot believe you can RUN, JUMP, PLAY... why are you even on here??? Sounds like you are doin awesome... If I jumped...I would land on the ground...for a LONG time... lol