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

[Marg]

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

I agree! LOL

 

[Sherlock]

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

Hey, Jac, what is your impression on why you go up and down after the RTX?

Yes, I exercise all the time - life would be boring without it. As far as the muscle stiffness goes, that might get better after using the sodium bicarbonate. I'm going to start taking it 1/2 hour or so before exercise to see if I feel any different.

P.S. I've read of one doc who uses quercetin to alleviate sweating, and also the famous black cohosh.

 

[redo]

followed by chilliness...

When I was on RTX, despite being in a hot room, I had to wear my clothes while sleeping because I felt so cold. Not every night, but very often. If you find others non-ME patients getting the same symptom from RTX, then please do post.

 

[Sherlock]

When I was on RTX, despite being in a hot room, I had to wear my clothes while sleeping because I felt so cold. Not every night, but very often. If you find others non-ME patients getting the same symptom from RTX, then please do post.

Did you measure your temperature during those spells?

In the world of using RTX versus cancers, the phenomenon of chills and hot flashes earned the nickname "shake and bake". But I hadn't heard of long spells of chilliness in the days/weeks afterward.

 

[redo]

Nope, didn't measure. I lasted for many weeks with me, but it was on and off, most nights on, but some off. That symptom came out of nowhere with the RTX.

 

[Jacque]

When I was on RTX, despite being in a hot room, I had to wear my clothes while sleeping because I felt so cold. Not every night, but very often. If you find others non-ME patients getting the same symptom from RTX, then please do post.

The sweats have seemed to have left for last 4 or so days.... have hot flashes every now and then but sweats have subsided.... YEAH.. just get warm surges...
Had a full on puking migraine all day yesterday... but have been havin more energy again.

What is my impression of or the ups n downs? Hmmmmm I am just gonna guess that my immune system is making "surges"??? It gets suppressed...then peaks? Heck I dunno... All I know is there were VERY FEW surges in ENERGY prior to the Ritux... I was just down on the couch..

Awesome you get to exercise.. I do not have the energy to do that and the pain in my muscles the following dayyyyys is just not worth it... Tell me about the baking soda... When I did baking soda I got so swollen bc of the sodium content... and you are using Baking soda from the Health Food Store, wo that Aluminum Ingred? I am sure you are. Geeeez I have to remember I am talking to Sherlock.

So...signin off...gettin major headache again.... ughhhh (neck related)

 

[Sherlock]

Awesome you get to exercise.. I do not have the energy to do that and the pain in my muscles the following dayyyyys is just not worth it... Tell me about the baking soda... When I did baking soda I got so swollen bc of the sodium content... and you are using Baking soda from the Health Food Store, wo that Aluminum Ingred? I am sure you are. Geeeez I have to remember I am talking to Sherlock.

made me laugh again, Jaq. Who would have thought that reading on a CFS group could be entertaining

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.

 

[Seven7]

I use this on water http://www.epinions.com/prices/Alkalizing_Booster_Ph_Drops_1_25_Fl_Oz_by_Body_Rescue_Body_Rescue

The exercise lady on Klimas, told me to use alkalized water right after (or before I forgot) exercise. I just use the drops in the water I take while I exercise, since using this drops, I do not suffer much from pain.

 

[Sherlock]

I use this on water http://www.epinions.com/prices/Alkalizing_Booster_Ph_Drops_1_25_Fl_Oz_by_Body_Rescue_Body_Rescue

The exercise lady on Klimas, told me to use alkalized water right after (or before I forgot) exercise. I just use the drops in the water I take while I exercise, since using this drops, I do not suffer much from pain.

Hi, do you mean the lactic acid "feel the burn" pain from exercise? Or M.E. / fibro type of pain?

Or are they the same thing? (I've never had fibro so I don't know.)

 

[Sherlock]

Dr K is an Immunologist ? Or something in that arena... He is brilliant when it comes to the Immune system...

from http://www.openmedicineinstitute.org/About.html

Dr. Andreas M. Kogelnik, is the Director. Dr. Kogelnik received his M.D. from Emory University School of Medicine in Atlanta and his Ph.D. in bioengineering from the Georgia Institute of Technology. Subsequently, he completed is residency in Internal Medicine and a Fellowship in Infectious Diseases at Stanford University and its affiliated hospitals. Following his clinical training, he remained at Stanford with NIH funding for his post-doctoral research in microbiology, immunology and bioinformatics with Dr. Ellen Jo Baron and Dr. Stanley Falkow, where he explored host-response profiles in severely ill patients.

 

[Seven7]

The type of pain I get is like when you lift heavy weights "the day after pain". Is the only muscle pain I get besides muscle fatigue / weakness. But i get it on daily activities, sometimes I do nothing and get that. Take the drops and it goes away much sooner.

 

[Sherlock]

The type of pain I get is like when you lift heavy weights "the day after pain". Is the only muscle pain I get besides muscle fatigue / weakness. But i get it on daily activities, sometimes I do nothing and get that. Take the drops and it goes away much sooner.

Aha, that's called the DOMS (Delayed Onset Muscle Soreness). I've noticed myself that on some days I do get DOMS from exercise that usually wouldn't be enough to create the delayed soreness.

 

[Seven7]

But I get it from doing nothing. Usually when My HR is kept outside the envelope doing day to day stuff, shower, eating.... Then I get the pain. Since I treated OI (Florinef), I can exercise well now, no pain afterwards.

 

[Sherlock]

But I get it from doing nothing. Usually when My HR is kept outside the envelope doing day to day stuff, shower, eating.... Then I get the pain. Since I treated OI (Florinef), I can exercise well now, no pain afterwards.

That's interesting. What muscles do you get the pain in?

Also, it sounds like the anti-inflammatory effect of the drug is what might be giving the relief... not the mineral effects for which the Florinef is usually used to treat the OI. Sort of a lucky co-incidence

 

[Seven7]

My Pain was mostly in the left calf and thigh. I am sure is about blood pooling because when I started using Compression stockings the pain moved to the top part of the body. Since I use compression I don't get pain, when I skip the compression socks I get it if I overdo (then use the drops). Also, the other day I used new type of compression that did not include the feet, day later the left foot hurt. So My pain is OI related (blood pooling).

I have used inflammatory and they give me some relief but not like this. The first thing I noticed is I felt my ears, like I stopped getting blood a while back and didn't notice. Also the brain, u know when you have the feet sleep and blood flows again you get that tingling and circulation pain? I could literally feel more blood to the brain and the same feeling that you get when ur feet are getting circulation again int he head!!

I don't get PEM anymore much, All the other balance issues, skipping words when writing, Inability to read, all that is gone or better. Was able to stand from bed and be going around and exercise for 1h after only 3 days of starting the florinef. I went from been in bed, to full time work after one week of starting Fl.

 

[Sherlock]

The first thing I noticed is I felt my ears, like I stopped getting blood a while back and didn't notice. Also the brain, u know when you have the feet sleep and blood flows again you get that tingling and circulation pain? I could literally feel more blood to the brain and the same feeling that you get when ur feet are getting circulation again int he head!!

I don't get PEM anymore much, All the other balance issues, skipping words when writing, Inability to read, all that is gone or better. Was able to stand from bed and be going around and exercise for 1h after only 3 days of starting the florinef. I went from been in bed, to full time work after one week of starting Fl.

That's quite a story, 7. I wonder why the drug would give you more blood flow to the whole head, yet lying down didn't give you those same feelings.

Maybe the drug was dilating the blood vessels in the head? Yet if the Florinef was a powerful vasodilator (which it normally isn't), that would seemingly make the OI much worse... Could the benefit be from the increased blood glucose that the cortisol-like drugs create?

An interesting puzzle. Is your experience/improvement typical in Florinef users?

 

[Seven7]

I have read mixed reviews! Some people feel nothing, some people worse, some people much better life altering!!! No idea but the doctor told me most my issues would go away when I treated OI, So she could identify that most of the oddity was coming from OI. I should have add it that I Added salt tablets also. When you use florinef u increase salt. So I am doing 6 tablets a day (6mg or g I think)

 

[Sherlock]

One last question for the day

Was that feeling in the head pretty much immediate with the first dose, or did it come on gradually over days?

[edit: Well, it seems as though corticosteroids are known for increasing intracranial pressure, but perhaps only in some people. I haven't zeroed in on the mechanism. Also, it seems that in some brain injury cases, steroids are no longer given for their anti-inflammatory properties because of the danger from the ICP. ]

 

[Tia]

Told you guys about the Rituximab! It's good stuff!

 

[Jacque]

made me laugh again, Jaq. Who would have thought that reading on a CFS group could be entertaining

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 powderoften has aluminum right on the label as an ingredient.

Wha

made me laugh again, Jaq. Who would have thought that reading on a CFS group could be entertaining

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.

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.