Question about Coffee and CIDP ?

    • Anonymous
      February 10, 2008 at 12:33 pm

      Hey everyone …I know this will sound stupid ….but does others on here drink lots of Coffee and notice any worse feelings or effects afterwards. I’ve been a coffee drinker for years and i’ve noticed over the last year or so whenever i drink coffee my feet feel worse afterwards for hours.

      Maybe just coincidence or placebo ….but i did a Google search on coffee and inflammation and sure enough there are some studies by the ”Journal of Clinical Nutrition” showung some clinical studies of people who were heavy coffee drinkers showed their inflammatory markers (IL-6/TNF) are increased markedly in their Blood levels as especially Interleukine-6 by some 50%. Then i researched high Interleukine-6 levels and Autoimmune Diseases and there are studies showing that chronic high levels raise inflammation which signals the T-Cells and Macrophages to be on the attack.

      Anyway i know Coffee is not what gave us our CIDP but i’m just researching what i can so i’m curious if anyone has any thoughts one way or the other.

      Hope this wasn’t a stupid Question.

    • Anonymous
      February 10, 2008 at 12:46 pm

      It does not sound stupid to me. My GBS residuals/symptoms are worse when I take vitamins for a few days (and I know that sounds stupid), but I think my immune system must be overstimulated. Different things affect people in different ways and we just need to listen to our bodies and try to do what we think is best for us! It is good that you noticed a correlation so you can do something about it.

    • Anonymous
      February 10, 2008 at 2:21 pm

      Right on and thanks Iowagal for your input. Yeah i usually only have coffee on the weekends and my feet always feel more inflammed after several large black coffee’s with only Cinnamon and no sugar or creme. I notice my fingers still shaking as the caffeine is bothering me also.

      Interesting to hear you mention about vitamins so you never know if it does crank up the immune system more. Do you know which vitamins make you feel worse.

      Thanks !!

    • Anonymous
      February 10, 2008 at 3:29 pm

      Interesting, and it does make a lot of sense to me. Quick story about a medication im on called Provigil and caffiene ….. My doc. said to me that many of his patients told him that is too overpriced and that they (the patients) say its would be better for them to have TONS of caffiene instead of the Provigil as it would have the same effect and not cost them much at all. Well, being the wimp I am, and wanting to get off as much medication as I possibly could, I tried to see what would happen if I did exactly that, ……………………… I chose not to comment on that rediculous little experiment I tried – surfice to say that I (and my family) are much much happier if I just stick to what I know and dont load myself with caffiene.

    • Anonymous
      February 10, 2008 at 3:52 pm

      Hi, Eric.

      Not a stupid question at all. I too have trouble with caffeine. Decaf is okay, but one cup of the regular stuff and I’m washed out for the day. Hands shake, knees quiver, light headed–it’s all there.

      Nice thing on this side of the Pond: tea’s much more the official drink and it doesn’t have nearly as much caffeine.


    • Anonymous
      February 10, 2008 at 9:40 pm

      I notice the coffee effect once in a while, but it hasn’t been bad enough to give up my coffee yet. I always figure shaking hands from too much caffeine just compounds whatever CIDP stuff is also going on.
      Ali, drinking enough coffee to make up for Provigal must have made you so sick!! :p

    • Anonymous
      February 11, 2008 at 12:36 am

      I think coffee is also a dehydrant which makes it difficult for the blood to flow properly and thus does not get enough nourishment to the nerves. I try to drink h2o in between coffee breaks.

    • Anonymous
      February 11, 2008 at 10:29 am

      Well i’m on Green Tea this morning as i went and bought a box of 40 tea bags. I do admit i fell groggy without coffee right now but i’ll just deal with it. Anyway thanks again to all who posted as i always enjoy reading everyone’s thoughts etc…


    • Anonymous
      February 11, 2008 at 3:51 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]Is it just the caffeine or some other compound in coffee that causes this reaction? i drink several cups of tea with cream and Splenda a day, throw in a diet coke or two, and don’t have a reaction all, though all of these beverages are consumed with food and interspersed with lots of water. If I [U]don’t[/U] have my caffeine I get a tremendous headache. Hmmm
      I take Prednisone (down to 40mg from 60), CellCept, Gabapentin, oxycontin, and Norvasc for my BP
      Any thoughts?[/SIZE][/FONT]

    • Anonymous
      February 11, 2008 at 6:49 pm

      It is true that caffeine can cause inflammation. Green tea is very good for you. It is an antioxidant.

      For a cold green tea drink I recommend Fuze Green Tea – White tea is also good. It’s in a tall glass bottle. It has tons of extra vitamins in it & it’s very tasty. It’s good to catch on sale too. Our 2 main grocery stores here often have it on sale for $1 a bottle. I usually stock up with 20 at a time.

      Here’s a link to the Fuze website:

      Click on products, then tea to get to the green & white teas.

      Oldbat –

      There is some concern that diet sodas & Splenda are actually not good for you either. The thought is that they contain alot of chemicals. It’s something that I’ve researched a little bit for myself & I’ve decided that our family will stay away from them. You can use Google to do some research for yourself on it.

      I also get very bad headaches if I don’t have caffeine everyday. I usually drink a can of Coke everyday. I actually gave it up a few years ago, for about a month & after about 2 weeks the headaches went away. Of course, I started drinking it again & am right back with the headaches.


    • Anonymous
      February 12, 2008 at 2:03 am

      [FONT=”Comic Sans MS”][SIZE=”2″]So there I was bragging about no side effects when I peeled off my socks and saw all the swelling around my ankles and the tops of my feet, they looked (and sorta felt like) balloons about to burst, dang! Guess I’ll have to cut back at the very least.
      I went to the Splenda because I’m starting to head toward steroid induced diabetes and was trying to cut back on the sugar, guess I’ll have to rack down some Stevia, it’s the only plant based sugar substitute that I know of, but so hard to find.
      P.S. How is Emily’s stomach flu?

    • Anonymous
      February 12, 2008 at 10:41 am

      Veronica – Emily’s doing well. In the last 2 days she’s gotten her appetite back. She’s eating me out of house & home again. She threw up 5 times over a 7 hour period, had a temp of 99.5, and had a headache for 2 days. So we’re not even sure what the heck she had. It could’ve been a short stomach flu, weird virus, or she got herself so worked up that day over losing her tooth that she made herself sick – which has happened before.

      She’s getting another infusion today – 4 days early. Whatever she had made her immune system go haywire & she’s having more aches & pains than usual.

      Thanks for asking about her.

    • February 12, 2008 at 11:04 am

      I am confused. What else is new. Our pediatrician (the on who prescribed melatonin for Kevin that we no longer go to) TOLD us to drink caffiene! It HELPS with headaches. So is this true or not? Do we have to google everything to double check the docs?
      Dawn Kevies mom

    • Anonymous
      February 12, 2008 at 12:45 pm

      Well i defenately feel better today with no coffee. I’m sticking with Green Tea as my being lethargic as i was yesterday is so much better. Also little or no headache. Still some trembeling of my fingers but not as bad as yesterday.

      As far as my feet feeling better or worse……can’t say as i really do not notice one way or the other. If i notice anything over the next several days i’ll chime in.

      Enjoy everyone’s posts.

    • Anonymous
      February 12, 2008 at 1:18 pm

      Dawn –

      Caffeine opens up the blood vessels thus helping with a headache. The problem lies when you drink caffeine every single day – your body gets used to it so when you go without it, the headache is the withdrawl symptom.

      Hope that helps.

    • Anonymous
      February 12, 2008 at 1:42 pm


      Have you tried a tea called “Rooibos” or I think in the states it may be called “Redbush”. If you google Rooibos it will give you plenty of info. It seems to be gaining popularity here in the Sates and Europe. It comes from South Africa, and I grew up drinking it. No caffiene, low tannin. It is supposed to help with a variety of things, babies are even given it to drink because it is not a ‘regular’ tea. I have mine with milk and splenda. I think it may be an aquired taste. PM me if you are interested and I can send you a few bags in the mail to try. When my folks come over to visit, my mom brings me tons and tons.

    • Anonymous
      February 12, 2008 at 1:55 pm

      I’ve tried Rooibos, when I lived in Botswana, and I loved it. I can’t vouch for it’s health benefits because I only drank it a few years but everyone I knew over there preferred Rooibos to any other tea and coffee as well.

      I’ve seen it in a grocery store recently but I can’t remember where – I’ll ask my HB to check next time he goes to see if I was hallucinating or not. You can also ask grocery stores to order things for you – I did this with Kava, a low acid coffee that my intestines prefer (also an acquired taste.)

      Personally I haven’t noticed a difference when I drink coffee or not but then I’ve always been one of those people who can drink skip days and not get a headache.

    • Anonymous
      February 12, 2008 at 3:47 pm

      celestial seasons tea makes the rooibos. It is delicious. Thanks for the reminder everyone.

    • Anonymous
      February 12, 2008 at 4:39 pm

      Thanks Ali for the offer of sending me the Rooibos Tea Bags as thats very nice of you …..but thats o.k. as i see them at Wild Oats grocery store here in Albuquerque. I’ll check them out next time i’m over that way.