Overwhelmed by Guaifenesin treatment protocal...HELP

Discussion in 'Fibromyalgia Main Forum' started by gladone, May 17, 2006.

  1. gladone

    gladone New Member

    Hello to all,

    Please allow me to ask for your opinions and personal trials with guai.

    I am newly dd with CFS & FM and have been advised to start the guai protocal. I have been on it now for approx. 2 weeks. I have been doing research on the internet regarding same and I am overwhelmed.

    For the most part everything I read states I must change my life and preferences. I have gathered that I need to remove anything in my life that contains salicylates as they are absorbed by the skin and intestines. Causing the guai to be voided in my system by my kidney's.

    The problem appears to me that these salicylates seem to be in almost everything!!!!!

    *skin cleansers
    *shampoo/conditioner/hair spray
    *lotion/sun screen/ lip balm
    *deoderant
    *toilet paper & baby wipes w/ aloe
    *mouthwash/toothpaste
    *grass/plants while gardening (sap)
    *vitamins/supplements

    Not only does this seem like a daunting task to try weed out everything I use on a daily basis. It could also cost a small fortune to replace all needed items (which is everything!).

    I was not told this information by my Doc when she started me on this protocal (she may not know of it herself). I do not/could not expect her to know what products contain salicylate. Nor can we assume I am following these guidlines. So how could we ever know if it is working????

    This is overwhelming, I wounder how others of you have managed to do this in your lives?. How do you know it's working?

    I have an appt. Friday with my doc and any input would be welcomed so that I can go with more background on this matter.

    Thanks for your time,

    Gladone




  2. Jana1

    Jana1 New Member

    Hang on Kiddo, help will be coming soon when the right people see your post. It is not that hard, really, when you print out a list or two and get some easy helps. Mikie or Dee50 or Smiffy can tell you what you need to know, as well as several others...

    I am outside working and too dirty to sit here long, but sit tight...and good luck...Jana
  3. Mikie

    Mikie Moderator

    You haven't mentioned whether you have read Dr. St. Amand's book, "What Your Doctor May Not Tell You About Fibromyalgia." It is an absolute necessity to read the book before starting the protocol. Failure is almost guaranteed unless one is familiar with the protocol, how to get sal free, and how to tweak the dose. This is all explained in the book. You can also learn a lot by going to guaidoc.com.

    In terms of finding sal-free products, you can find a link at the guaidoc website or do a search on sal free. There are several websites which list sal-free products. It is important to always read labels before buying products, even those on sal-free lists, because manufacturers change their formulas all the time. The book lists 1,000 of the most common sals found in products.

    At first, the protocol is overwhelming. That is why it is best to take one's time and become thoroughly knowledgeable and sal free before starting.

    The treatment has been a God send for me and has helped thousands. We have other members here who are just starting the treatment. I'm sure others will be along to help, but most will likely tell you to be sure to read the book. Best of luck to you.

    Love, Mikie
  4. gladone

    gladone New Member

  5. gladone

    gladone New Member

    I just ordered Dr. St. Amands book on Amazon as well as one on the guai protocal. Can't wait to get them. In the meantime would you recomened I stop taking the guai till I have removed the salicylates from my daily life?

    Thanks again for the info....I hope to not be so overwhelmed in the very near future.

    Gladone
  6. Mikie

    Mikie Moderator

    It may be a waste of your money unless you are sal free. We all have different levels of sensitivity to the sals. Some will have the Guai blocked with just a hint of sals. Others, like me, will be able to tolerate a few sals, but not much, before the Guai is blocked. A lucky few seem to be able to tolerate lots of sals.

    In the beginning, it is wise to be sal free before starting the Guai. For most people, sals will block it at some point.

    Good luck.

    Love, Mikie
  7. Smiffy

    Smiffy Member

    Good luck with this gladone!

    Take your time to understand the book & change to sal free products before you start.

    You can buy a variety of sal free products at the Marina del Rey fibroconnection website. However, if you join the Guai Group message board (there's a link from the Guaidoc site) they have an extensive list of sal safe toiletries, cosmetics & dental products, many of which are reasonably cheap e.g. vaseline for lip care.

    The Guai Group will send you a daily digest of the message board if you wish, & they have experts to answer your questions including Dr St Amand's nurse, Claudia..

    Please don't feel overwhelmed. After a while, avoiding sals becomes second nature. Wear gloves for gardening & housework.

    Be prepared for a tolerable worsening of symptoms as the phosphates leave your body, once you have found your individual dosage. The protocol should not take you too long if you have only just become ill - I'm trying to reverse 20 years of severe symptoms.
  8. janieb

    janieb New Member

    My niece has the same condition, plus hyperflexibility, (both of us, and long necks), and we have been working on this together. We started with THE BOOK. After reading that a couple of times and getting a prescription from my doctor, I began checking on all the products in my house.

    I really isn't as overwhelming as it sounds. I bought a small, portable magnifying glass, printed all the lists of usable and unusable products from the internet and started checking things out. Quite a few of my products were on the to use lists, and some I had to call customer service to get an answer. Others I contacted over the internet.

    After a couple of days, I'm down to two or three products I question. My niece simply took the lists with her and bought products that were listed.

    Still need to buy gloves for dishes, etc. but I'm excited about getting started. Also trying to reverse 15 years of the problem. When you read your book, you'll see that symptoms appear in order and it will give you a better idea of where you are.

    Good luck to you. All these gals have been a huge help to me.

    janieb
  9. Mikie

    Mikie Moderator

    Who embarks on this treatment. It looks overwhelming at first, but if broken down into doable steps, it helps. I recommend reading the book as many times as it takes to understand it. Then, start with products. One can try to replace all of them at once or start with a few and then a few more. Finally, when one is ready to start the dose, it helps to keep a daily journal with the dose, diet, and effects one notices.

    This is a very long-term treatment, so the time it takes to get ready doesn't need to be rushed. In fact, preparation is the most important part, along with tweaking the dose to get it just right. Once one is on the right dose, there is nothing to do but sit back and let the Guai do its thing.

    Take your time and try not to let this overwhelm you. We were all where you are now and remember how overwhelming it can seem. You will do just fine. Take your time and don't pressure yourself. Good luck.

    Love, Mikie
  10. gladone

    gladone New Member

    for your support and wisdom. I will do as you said....read the book and start out slow. It's taken five years to get to this point, what's another month or so more.

    Thanks again,
    Gladone
  11. Dee50

    Dee50 New Member

    Good morning, I feel you are on the right protocol. Guai rocks! Yes at first the sals are hard but it gets easyier. Hang in there. I've been sick many years and sure wish I'd started the Guai Protocol years ago. I'm also an the HG diet. You will understand more about that when you read the doctors book. I know that its working on many parts of my body, right now its working hard on my lower back and hip-pelvic area. I've learned to just keep things simple as I can (in the products that I use) You can always check your products out-for sals with the guai email group:)
    I wish you the very best:)
    Dee50
  12. Mikie

    Mikie Moderator

    Is that, unless you buy specialty sal-free products, the ones sold in the stores which are sal free are usually the cheapest ones you can buy. Botanicals are expensive to add. The cheaper products use imitation substances and not plant-based ones.

    Dee, I'm so glad the Guai is working in your body. I may be close to reversal but if I don't get my maintenance dose for a couple of days, I can sure feel the old aches and pains returning.

    Love, Mikie
  13. Dee50

    Dee50 New Member

    Oh yea! The guai is working overtime. I don't think I'm on to high a dose but I seem to cycle hard and long. My back is hurting so bad that I went and got full x-rays for my DO doctor to look at..It is screaming so loud that it feels broke!lol But my neck and other body parts are ok and they normaly hurt at a 3 or 4 level. I'm so so glad you keep talking about the Guai Protocol I owe you one Mikie!lol My doctor is learning alot about this protocol from treating me I'm very careful and will not use anything with sals in it. I'm gaining weight on the HG diet:(
    Take care,
    Dee50
  14. Mikie

    Mikie Moderator

    Thank you but you don't owe me a thing; I'm just thrilled that it's helping you. If you need to, you can drop the dose if the pain of reversal gets to be too much.

    I've talked about the Guai ever since it started helping me. I didn't immediately jump on the bandwagon. It seemed restrictive to me and I was overwhelmed by the info and protocol. I finally decided if I wanted to live without pain and opiods, I needed to give this a second look. I am really glad I did.

    Dee, your posting here will likely lead someone else to get help from the Guai treatment. It really is a word-of-mouth kind of thing.

    Love, Mikie