TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Years ago, when I was so sick with lyme I thought I was dying, I quit caffeine. If I went through withdrawal, I never knew it- because my symptoms from lyme were THAT bad.
However, once I started to get better, I started drinking coffee again. I never was a soda drinker, just huge on coffee. So once I started to get sick again, I said thats enough- no more caffeine. It is my main source of sugar. I really don't eat any other types of sugar in great quantities, so I am sure
my yeast just loved my pot or TWO of coffee a day. (With three scoops sugar in each). So I threw out the coffee pot, and that was that.
The severe unrelenting, I am going to die migraines hit RIGHT after that and lasted for three days. The only way I could get rid of them was to drink a little bit of soda and pop three aspirin. Within the hour, they would be gone, but come right back.
The last few days, they have been there, but not really a migraine. Just a constant nagging in the head telling me I am about to get a migraine- like a constant aura. So in order to avoid THAT I have to drink one cappucino or two a day. Now I want cappucinos all the time. Good grief.
Is there anything anyone here did to help with caffeine withdrawal and how long did it last?
I have noticed that ALOT of my symptoms got better, but my head is a mess with pain. I can fall asleep now, I'm not getting up to pee a zillion times, I'm not AS moody, and that hot flush feeling all over my body with every second of the day headaches all but disappeared.
Twice this week, I went shopping and was able to walk with NO problems. ( that is a first, trust me). I paid for it with severe back pain.
I think its the combo of the abx, some other stuff I am doing, and getting off caffeine that is helping, but I need to find something to ease it just a little.
Hopefully someone else had this problem too! It's quite annoying and a royal pain in the head .
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I am NOT a good person to ask being I remain so backward in my responses to whatever.
I USED to have MANY a day!! I quit drinking soda's or pop as we call it here back around 2002.
Didnt have any for years,,,then one hot dry day of summer I occasioned to drink 2 in same day.
It put me on the living room floor for 2 days,,,I kid you NOT!! Never touched it since.
Recently I took up a root beer float fettish. BUT not nearly the same as full octane Mountain Dew and Cherry pepsi.
It says no caffeine on the label,,,and I guess thats true cause it doesnt bother me.
Now every few months I will indulge in a brew of HOT tea. Even with some sugar added(my ONLY source of white sugar these days)it doesnt bother me either,,,go figure.
Not wanting to be delegated to the floor again,,,I dont drink soda pop OR alchoholic drinks any more. OH the price we pay for being lymies!!!
AND anybody who THINKS they cant do without that soda,,think again,,,same with coffee I spose cause I never drank that 'creek water stirred with a green stick'!!
Stick to your guns Jody and kick the caffine,,,it doesnt do the body ANY good things,,,only BAD!!! YOU CAN do it!!!like --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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CaliforniaLyme
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Member # 7136
posted
I quit for 2 years and it did not seem to make a difference except I missed it- so i went back with caffeine*)! yay!*!*!
It MAY make a difference with YOU though so I am not saying don't quit it!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
caffeine, whether in coffee or soda form, will make you feel temporarily better.
caffeine increases your bloodflow, and your heart rate.
thus thinning your blood, and allowing for clearer thought, and lessening of lyme sypmtoms.
i went off all coffee, etc, when i first got sick.
now, i am at @ 50% and am back to a cup or two a day. i LOVE how caffeine makes me feel, but, its not a good idea to use in excess while treating lyme.
good luck, espressos for everyone....
humbly,
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Two basic approaches: cold turkey and weaning. Sounds like you've tried the former. The latter always works better for me.
Posts: 727 | From USA | Registered: Mar 2006
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Since lyme is microaerofiliar bug, and the chemicals our body needs most are oxygen and water of course, consumption of caffeine will lead to decrease in these to main sources,oxygen and water distribution all over the body will be decreased.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I had lots of horrible headaches for about a week after stopping soda or coffee.
Caffeine is a drug. It is likely that you are having withdrawl symptoms. Also, caffeine does have an effect on headaches.
There is a Nature's Sunshine product called caffeine detox. I have no idea if it would help you but am mentioning as an option. I didn't know about it when I was quitting. I quit soda first then much later quit coffee. Had similiar reactions to both of them.
Caffeine also has an effect on blood sugar.
Caffeine has been shown to reduce insulin sensitivity independent of obesity, type 2 diabetes or exercise.
Another study concluded that The effects of insulin are greatly enhanced with the use of caffeine because of it's ability to block the enzyme phosphodiesterase. http://www.sover.net/~devstar/hypogly.pdf
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
When I was herxing bad and very naseaus I did NOT want coffee and didn't drink it for months.
Then when I felt better I started drinking one cup a day. That was too much for me - got PMS and breast pain so I make it only 1/3 caffeine and the rest decaf.
Coffee is very "dirty" in terms of pesticides so I buy Organic Fair Trade and cold brew it to remove most of the acid. My a.m. coffee is the best part of my day. I used to drink it all day.
Posts: 1761 | From USA | Registered: May 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
wrotek-
i dont know how credible those sources are IMO. if caffiene speeds up your heartbeat, how is it decreasing blood flow? it doesnt make sense, sorry, i disagree.
the point is i guess i am making is that if you take caffeine in moderation it is not going to make or break your lyme treating process.
anything in excess is questionable.
humbly
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Adrenaline also causes faster heart beat and constricts blood vessels simultanously.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Thank you guys for all of your replies, they really help. I will check out some caffeine detox stuff.
Its very hard to get off this crud only cuz of the withdrawal symptoms, which are insane.
Now don't get me wrong- I think some on here may have though that I was quitting coffee for my lyme, or that I believe that doing so is going to cure me. Thats not it, ok?
Coffee for me, though it makes me feel good initially in those first few minutes after I drink it, does not treat me well the rest of the time. I get headaches when I don't have it, crash and feel fatigued, get sweats, ( dont ask what it does to my tummy) and the list goes on. Coffee has even given me mood changes and brain fog, whether it be by
the sugar feeding lyme, or feeding yeast, or my gut just saying "STOP IT"
So for *me* it causes real symptoms that may or may not have anything to do with any critter in my body. I just want to try to live as healthy as I can... but dang these cappicunos are yummy.
I also have leaky gut syndrome that I still fight off, and I react terribly to alot of foods, drinks, perfumes ( MCS)
BUT , someone said a magic word I forgot about, and I was even at a health food store yesterday
ORGANIC.
I think I will be looking into something organic.... for now.
So thank you for all of your replies. I can only imagine that *in my case* stopping this evil drug *which it has become, for me* may help me out and it has. I lost a few symptoms here and there!
Now, onto quitting smoking again..... I know, I know, bad me
It can only help I guess, to get rid of the evils in my life, for my health.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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I've read that caffeine can cause drops in blood sugar. Not sure of the "science" behind it, but it could explain why you crash after drinking coffee.
Switching to organic is a good idea. You could also try substituting organic green tea for coffee. That way you still get a little caffeine, but also get the benefits of green tea's anti-oxidants.
Quitting coffee is hard! Good luck!!!
Posts: 90 | From Sunny Southern Cali | Registered: Sep 2006
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TerryK
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posted
When I was studied by Dr. Streeten for orthostatic hypotension he suggested that caffeine would help me. The reason being that caffeine is a vaso-constrictor. It also constricts the sphincters in the legs that push the blood back up to the heart. Part of my problem is that the sphincters don't work properly which causes blood to pool in my legs (creates the lovely purple legs and feet). So for some, yes, caffeine can increase circulation.
He suggested caffeine pills. I take a prescription that is stronger than that to keep my blood pressure up and don't want to add anything else. Besides, as soon as the caffiene is out of my system, I crash.
Yes, caffeine can cause a drop in blood sugar. As I mentioned above, it can cause less sensitivity to insulin which can lower blood sugar.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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mojo
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posted
I meant to mention earlier that it would probably help you tremedously if you cut down gradually. That would help your headaches, I think.
Organic would help too, and it tastes yummy. I buy French Roast Organic (both caff and decaff) on eBay 5 lbs at a time and it's not too expensive that way.
Posts: 1761 | From USA | Registered: May 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
yes, id go organic also.
and the smoking...well, you know
good luck!
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
I quit drinking coffee about 4 years ago-
I kept getting killer migraines on the week ends-
Finally I figured out that I was because I drank coffee at work and not on the week ends-
So I went cold turkey - Big mistake -
I had a Killer migraine for 13 solid days-
I had no idea that caffeine was so strong-
So Go Slow -
I stay completely away from it now--
My migraines are less strong now also
-- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I quit caffeine.
I don't have any caffeine unless I have some of my husband's pepsi or have tea. But it's rare.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Organic tea (real tea) -- green for the least caffeine, Irish Breakfast Mix for a robust tea with great flavor, elderberry tea mixed with black tea for the best-smelling/tasting tea on the planet, Buckingham Palace Garden Party for when you're feeling special and have a new hat to try out.
It's how I quit coffee. I'd have a cup of tea when I felt the headaches coming on.
I drink one cup of coffee several times a week, but I used to drink tons of it all day when I was working, just to stay functional.
If you find a tea you love, it will give you the same scrummytuck as the coffee, with minimal caffeine (for most teas) plus health benefits (or so they say).
If you're craving coffee, definitely get your adrenals checked. Homeopathic and herbal adrenal supplementation helped me quit coffee, too.
Sorry to hear you've been feeling so lousy. If people got the breaks they deserved, you'd have won the lottery by now.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
groovy2, how much coffee did U drink at work?
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
LOL thanks everyone.
Thanks Minocaut, your post made me giggle. I recently had my adrenals tested as part of a nice genetic thing that runs in my family as well as tumor growth on the kidneys. They found the tumor on my kidneys (just what I needed) and THOUGHT my adrenals were a mess ( or expected them to be)
but the suckers are working pretty well. I was amazed, since nothing on me works well .
I checked the men in my life. I think its their fault. LOL. No really though, thanks for all the suggestions...
and jay, youre right, killer migraines it does cause getting off this.
Knock on wood though, I *think* the killer migraines are gone.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Do you stop caffeine cold turkey!?! You could be putting your body into pretty bad shock. The impact that caffeine has on your pulse and blood pressure means cutting it off could cause some major issues.
I would taper down rather than cutting it off cold turkey.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
my headaches arew NOT withdrawal symptoms. I stopped coffee once for almost a month. I was taking 3 800 mg motrin a day (the max amount allowable)
I still had headaches and went to a neurologist for the headaches. this very wise neurologist said
"how much coffee do you need to stop the headaches" I told him one cup a day.
He said "why don't you just go back to drinking one cup of coffee a day. all of these motrin and the migraine medicines I can have you try are way more harmful to your body than one cup of coffee"
so that is all I have, just one cup a day to get rid of the headaches. and if I forget to have my coffee, or get a headache for some other reason I take the motrin.
now I only get hedaches a few times a month. I swear that sometimes people at work get the decaffe pot mixed up with the regular.
Oh, and btw, for my headaches its not just the caffeine. soda, mountain ddew, tea, straight caffeine pills don't work. its the combo of the caffeine and the antioxidants in the coffee.
Posts: 615 | From maryland | Registered: Oct 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
wrotek-
you have FIVE books about caffeiene?
wow. thats a lot of books.
why the interest if i may ask?
thanks
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Got headache in morning, which went away over a few hours.
I then started drinking just half a cup in the morning as my only coffee through the whole day.
That did the trick. No headache anymore.
After a few weeks, I could drop that half cup all together without getting a headache. To this day I may or may not drink that half cup in the morning. I can take it or leave it. Makes no difference.
I never had any cravings to resume coffee after I quit, and I drank about six cups per day. I just got a headache.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Anie, I tried to stop cold turkey, and did and I said exactly what you did " I think I am in shock". I absolutely had to get some caffeine into me, and lo and behold, all the symptoms disappeared.
Its getting better now, Im on a wean down. I will NEVER stop something like that cold turkey again. I honestly thought I was gonna die with my head pain.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
djf2005 - caffeine is a part of many lives from early years, but few people are interested what it actually does. So i decided to do opposite and learn something about it. I always wonder what my life would be if there was no caffeine. Better or worse.
Caffeine reminds me matrix, the movie . The system, that people refuse to be disconnected from and will protect
Groovy2, ---------------------------------- One thing about coffee that I found surprising is that coffee is the Second most traded product on the planet. ----------------------------------------- Yes, do U know what is the position of tea or cocoa ?
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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posted
I actually am probably a little strange in that I have never had caffeine to drink. I do not drink soda, coffee, or tea. In fact, I have stopped drinking all juices and milk as well because of the sugars. Unfortunately, my pain, especially in my hip is only getting worse. I would appreciate everyone's continued thoughts on the diet aspect. Has anyone treated Lyme symptoms with diet alone? I was on IV rocephin about two years ago, and had a major episode of depression (I'm told it was a side effect from the medicine). I really don't want to go back to that, but the pain is getting unbearable. My husband needs to rub my hip every night and it feels like something is rolling over the joint. I look at it often thinking that it should be completely purple with a bruise because it hurts so bad, but it's just deep in the joint.
Posts: 49 | From Holly Springs, NC | Registered: May 2007
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lymeinhell
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Member # 4622
posted
I quit cold turkey in 2003. It just made me feel so awful. And I too was a junky like you for decades. Also coincides with the migraines and headaches from you-know-what, but my blood pressure was out of control, so I had to quit.
I went without all coffee for 2 years. When things began to get back in control, I added 1/2 cup a day of decaf with a little soy milk... then gradually to 1 cup. Now I have 2 cups of decaf in the am, and on weekends a cup in the late afternoon. There is a slight amount of caffeine in decaf. I don't drink soda, so that was no biggie.
If I'm out and the server screws up and gives me caffeinated, I know within minutes - I get all red and flushed and sweaty.. It's happened a few times at good ole DD...
Not sure if you can quit in moderation, so maybe add a few Excedrin a day to kill the headaches and give your bod the caffeine it is craving.
All that sugar is just feeding the yeast party you know is going on. Try Xylitol - it's amazingly like sugar and even safe for diabetics.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Foggy
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Member # 1584
posted
Interesting how Caffeine is a common ingredient in many prescription and over-the-counter headache medications. It can cause & treat headaches. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
foggy, pharmaceutical companies put it there cause they know most headaches are actually a caffeine withdrawal headaches.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Hey Julie! Thanks for replying.
Really? You get all hot and flushy too if you drink caffeine? I really hate to say this, but I am GLAD i am not alone on that. It has to be the yeast, or whatnot, but in any case....
I'm slowly doing a great job getting rid of the crud. LOL
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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tailz
Unregistered
posted
Maybe I need some caffeine, too?
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
tailz-
a cup of coffee and a cellphone would do you good!
just kidding!
hope you're feeling better
merry chirstmas
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I am a frequent "quitter" of coffee and usually take it up again because I love it too much to care what the detriment may be to my health. I stopped a bit during antibiotics, mostly to avoid the sugar I was inclined to add. I replaced it with Yerba Mate tea, which gives good energy and no side effects. Between courses of antibiotics I learned to drink coffee black, this took a switch to high quality organics that have wonderful flavor without the need for additional sweetness. It really is like trying out different wines, taste many blends and roasts, there are so many to chose from. If you really must have sweet then try stevia.
Posts: 8 | From CT | Registered: Sep 2006
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quote: To prove the role of adenosine receptors in controlling inflammation, Dr. Sitkovsky turned to specific genetically engineered mice. These mice lack adenosine receptors, but are identical to normal mice in every other way. When exposed to various inflammatory stimuli (for example, a drug that mimics virus-induced liver damage), the receptor-deficient mice suffered extensive tissue damage and in some cases died, while normal mice were either unaffected or suffered minimal tissue damage. Further experiments revealed that no other receptor could substitute for the adenosine receptor. Mice lacking the critical molecular brake could not halt either organ-specific or body-wide inflammation.
It seems adenosine is mostly needed when inflammatory stimuli is present.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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posted
My integrative doctor told me that coffee has many ingredients in it besides caffiene that affect us in a negative way.
He said that even tho green tea has caffiene, it's other ingredients are so beneficial that he would suggest I drink green tea.
Well, I don't like the flavor of green tea, so I added bengal spice tea to it, to make it chai tea flavored (added cream and stevia to it too). I drank that for quite a while.
Then I decided to go to decaf green tea, even tho that meant some of the benefits would be lost in the process. I immediately started getting 1-2 more hours of sleep a night, and was able to nap when I felt tired in the afternoon.
So, now I mainly stay strictly away from caffiene. If I have to stay alert all afternoon, I'll get a decaf from Starbucks. I am very alert, but then don't sleep as well that night. I never realized how sensitive I am to caffiene until I went off it.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
If green tea had no caffeine, i would drink it.
Why take a risk. Maybe there are green teas with beneficial ingredients & without caffeine.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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It is worth noticing that adenosine is produced from chemicals called ATP ADP and AMP, which are the store for cellular energy. Perhaps if one ingests caffeine, human body must compensate it's effects by producing extra adenosine from ATP , which will result in decreased cellular ATP concentration & energy. Perhaps this can contribute to the fatigue. We do not want to waste our ATP.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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posted
Did u quit caffeine cold turkey ? Did some symptoms improve with quitting caffeine ?
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I do better with french roast, all the other roasts make my feet burn and make my stomach hurt.
Posts: 2905 | From New England | Registered: Sep 2004
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