Discussion in 'Fibromyalgia Main Forum' started by cpkr4me, Aug 3, 2006.

  1. cpkr4me

    cpkr4me New Member

    Hi Everyone,

    I just wanted to introduce myself. My name is Marti and I have fibromyalgia. I have had it for most of my life however I was only diagnosed with it back in 2003. i was first diagnosed with MS then after a year the doctors finally decided I dont have MS I have FM. I have 3 children ages 3, 5, 8 and a wonderful supportive husband. We originally lived in So. California and was seeing Dr St Amand and doing the Guai protocol. Then my husband and I finally realized we were not going to be able to live in So. California because I could no longer work. The pain and the brain fog was so bad. So my hubby took a wonderful job in Columbus Ohio. We have been here 1yr. After seeing two doctors here in Ohio that were suppose to be specialist in FM and many medications later I am no better. These doctors didnt believe in the Guai protocol so they will not write me a prescription for it. Hence I cannot get it filled anymore. My insurance covers the medications the new doctors gave me but with a higher co-pay that we cannot afford. So now I am not taking anything and very frustrated......

    Anyways....that is my story

  2. onlythestrong

    onlythestrong New Member

    I'm from Michigan.Welcome to the board,I hope you find this place as helpfull as I do.
    Hope to talk to you again soon.
    Your fibro sis,
  3. Jude

    Jude New Member

    Dear Marti

    Did you realize that Mucinex is guaifenesin and can be purchased without a prescription? If you are not alergic to blue dye it will work just as well as the prescription that you used to get. Mucinex is sold here at ProHealth or in local pharmacies. The price here isn't bad.

  4. rainorshine

    rainorshine New Member

    Glad you're here.

    I'm not familiar with the Guai protocal, but I am very sorry u aren't able to afford your meds. Will your Dr give samples? Just a thought.

    I, like you, no longer work because of my fm. So I am glad you get some rest at least. Are you trying for disability?


  5. cpkr4me

    cpkr4me New Member

    HI Everyone...Thanks for the warm welcome...

    Yes I am trying for disability. I was denied the first try but that is normal. I am now waiting for a court date. Because we moved from California to Ohio its taking even longer to get a date. I have been waiting since August 2004 for a court date. However I have been told that 99.9% of all FM and CFS patients do not get disability...

    Yes I am aware of the muscinex but I cant tolerate the blue dye.

  6. rockgor

    rockgor Well-Known Member

    Welcome to the board. Lots of nice people here.

    Try doing a search (top of the page) for "Free medications" by title and content. Some helpful posts will come up.

    Good luck w/ your case.
  7. Jude

    Jude New Member

    I can understand your predicament with the allergy to the blue dye and the inability to obtain a prescription for the compounded guai. Another option for you might be to try the FA ProHealth dye-free guai. It is reasonably priced and worth a try.

  8. cpkr4me

    cpkr4me New Member

    What is the difference between FA and the compounded Guai. Before moving to Ohio Dr St Amand had me on 600mg of the compounded Guai and 400mg of the FA twice a day. But what if I want to just take the FA...is it the same thing? Does it do the same???

  9. Cromwell

    Cromwell New Member

    Welcome I cannot see to type so we will talk again. I am glad you don't have MS.

    Love Anne Cromwell
  10. BlueSky555

    BlueSky555 New Member

    A warm welcome to you, Marti. Nice to have you aboard but sorry about the FM. I was recently diagnosed also but not familiar with the Guai protocol.

    I'm sure you will find comfort here from all of these wonderful members.

  11. tonakay

    tonakay New Member

    Fellow Buckeye here, I'm about 30 miles SE of you in Lancaster, been here all my life. Just want to welcome you to the board, loads of nice people here.

    [This Message was Edited on 08/05/2006]
  12. pam_d

    pam_d New Member

    Glad you found us!

    Someone mentioned Mucinex (which is Guai) and purchasable OTC at drugstores.

    But did you know that this site's store (just click on the "Store" tab above) also sells Guai? And cheaper than buying Mucinex...

    Don't know what your prescription co-pay is, but this option might not be too much more expensive...right now, bottles of 400mg. tablets, 100 to a bottle, are on sale for $13.46. The quality here is excellent, I think most of us who buy products here will agree.

    [This Message was Edited on 08/05/2006]
  13. twitcher

    twitcher New Member

    I live in Ohio too. What symptoms did you have that led them to diagnose you with MS?
  14. Jude

    Jude New Member

    Dear Marti

    The compounded guai is more of an intermediate release guai. The FA (fast acting) remains in your system for four hours. The ProHealth FA guai is a good quality, dye-free guai and sells for $13.46 for 100 tablets plus shipping. If you are not sensitive to maltodextrin it is as good as Solo Guai. I am unsure of your total daily dosage from the information listed in your post. Were you on 2000mg total for a daily dosage?

  15. cpkr4me

    cpkr4me New Member

    I was taking the FA 400mg Twice a day and the compounded 600mg twice a day.

    Then Dr St Amand switched me back to just the 600mg twice a day.

    I was wondering...can I take 1 1/2 400mg FA twice aday and still get the same affects as the 600mg compounded Guai

  16. cpkr4me

    cpkr4me New Member

    I was originally diagnosed with MS because I was suffering from numbness in my legs, feet, arms, legs. Blurred vision, weakness in my legs and arms, confusion, and severe fatigue and dizziness. I had all the tests done except the spinal tap. Based on my other tests the neurologists all agreed I had MS. Then after a year of being on steriods and my symptoms not getting any better I was sent to a MS specialist at USC. He was the one that determined I didnt have MS...I have something else....

  17. Jude

    Jude New Member

    Dear Marti

    You would probably see more benefit from the FA guai if you took (3) 400mg pills spaced out three times throughout the day for a total of 1200 mg per day. If you take it three times a day, your system is covered for a longer period of time. For some people the fast acting does not work. But this is worth a try in case you are one of the people that it does work for.

  18. Cinlou

    Cinlou New Member

    Welcome! You live in Ohio, I believe there is a doctor there, Peligrino.....he has written books...has practice in Ohio....? Glad you are here, sorry you have the DD....

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