Wanting to try Guaifenesin

Discussion in 'Fibromyalgia Main Forum' started by snowchevystl, Apr 3, 2003.

  1. snowchevystl

    snowchevystl New Member

    I have read the book by Dr. St. Amand and want to start this as soon as possible. I don't have a fibro doctor I basically just use my pcp for all my needs. What should I do if she doesn't buy into it. Does anyone recommend starting it on my own. I have had Fibro for atleast 8 years but think it could be longer and that I have just had the severe pain for 8 years. I am still able to work so that is good, just worried if i start this regimen if I will miss much work. I have leg pain, many headaches, not quailty sleep, IBS, itching. Also take the kids to Disney in June so kind of nervous to start this and then be really bad. I feel I have a handle on my disease and can pretty well control my pain so I could make it through a Disney trip in my current health. Anyone have any comments for me.....
  2. seaview

    seaview New Member

    There are many of us at this site who are using the guai.First, I am glad to see that you have read the book.....now, read it again.It has so much info in it that we cant help but miss it the first time. Next, you must change any of your body products( lotion,deordorant,soap,razors,make-up,shampoos and so on.)Also, any herbal meds are a no-no. If you use products that have sals (short version of salicytites)in them you will block the guai. Go to the web site owned by Dr.St.Amand and read through it and then go over to Tesas site at netromall.....I think there is a link to it from Dr.St.amands site....and of coarse ....read through it. Now, get out all your products and using the info on these websites see which you can continue using and which you need to replace. You really need to do this before moving any furthur.

    Next, I would suggest you asking your doctor for the guai. There are some print offs at the guai site that you can bring in to him.I presented it to my doctor this way. I have tried all the different meds that you recommended and then had to go back off of them with no good results.I am asking for a very safe med that carries no side effects other than possibly clearing out your sinuses :)...Yes, I can purchase it on my own but I CHOOSE to put myself under your care and want you to follow my progress.Doctors like that part!I am not out trying all different stuff without talking to him about it. He had heard of it and sorta reluctantly agreed to use my as his test patient. The only thing I really regret is not getting mapped. I should have gone to a chiropractor or such and had a map done. It sure would help me to know how my body is doing.
    So, read,read,read, then replace what products you need to, and then go to your doctor and present it to him.Keep asking questions here(as you will have a few)and we will try to help you along the way.
    I send blessings to you on your journey to good health...Kathleen
  3. Tibbiecow

    Tibbiecow New Member

    My rheumy wouldn't do it so he said do it on my own, so I did, and fired him and got the World's Best Doc, according to Claudia the FMS Nurse herself, even! Its a long story, but I almost had to stalk him and beg to get him to take me, now he is really glad he took me. Look in your area on the guaidoc website for rheumys who do this, or even massage/physical therapists who will map. Its better than nothing. What is also important is whether you are getting adequate treatment for your pain from your pcp. Dr. St. Amand doesn't believe in narcotic pain management but some of the others do. I am REALLY pain sensitive and think it is only humane. Your pcp really doesn't have to believe in guai, or prescribe, you can get guai over the counter now in 600 mg long acting.

    Guai will be like a bad flare,(My first lasted two weeks) then a good day or two, then back to flare(two more weeks), then more good days, then more good than bad, etc. I've been a year and just getting over the worst flare in a year, boy did it suck. I really needed my pain meds. But if you don't need much for pain on a really, really bad day you should be ok. After the sucks comes the good parts. I have my life, mostly, back. I have hope. I have days when I forget to take ANY of these "addicting" pain meds because I don't hurt, and I am in a hurry to get outside and get something done. ( I am on ultram.)

    There are several others on this website on guai to encourage you. I didn't find that the "major lifestyle changes" due to the sal avoidance turned my life upside down, and I'd already done the candida diet thing. Also go to the guaidoc website to link to a fibro website specifically for guai users. The worst was the strawberry toothpaste. Strawberry-clean just didn't seem right!

    Isn't your pcp doing something about your sleep? Headaches? Pain? Even the rheumy I FIRED was trying to help me solve those problems! Please go doctor shopping!!!!!(Don't be surprised if the first one you try doesn't fit. Talk to their nurse to see if you can interview the doc, and if you don't want an appointment you don't pay for one. I did it this way and managed to not see a couple of jerks! And not pay for it!!)

    [This Message was Edited on 04/03/2003]
  4. Dayle

    Dayle New Member

    I started guai Dec02 the most difficult part was not staying on my HG diet & away from milk products. But the longer I'm on guai the stronger I get; the better I feel, even when I do cheat. And cheats are legal, we monitor our own diets. Hopefully since you are still working you won't even need the HG diet. The longer you have had FM the harder your cycles. Why not try it on a long weekend or plan to give yourself some time off if you need it. You may not even need it.
    If your Doc doesn't help. don't worry get all the info & take it to your massage therapist or etc. Most alternitive docs want to learn all they can & will help you.
    Just go for it, it is really worth it,,,Good Luck,
  5. beckster

    beckster New Member

    And, I gather than you can't eat milk products. Why not?
  6. klutzo

    klutzo New Member

    My doctor does not object, she just knows nothing about it, so I just told her I was doing it. I am in charge of my body, not her, and I would never let her decide for me. I am on the HG diet and was on it for months before starting the Guai. For the one who asked, it's the hypoglycemia diet, or high protein/low carb diet, though I've had to modify it since my kidney lab tests are not normal anymore.
    I do not understand about the milk either. I do not remember reading anything about no milk products, except in the induction phase of the diet, which is only a couple of weeks. You do not even need the diet in order to take the Guai unless you have hypoglycemia, as about 40% of us do. You do need the book. This is too hard to do without it.
  7. snowchevystl

    snowchevystl New Member

    My pcp has me on prozac,celebrex and darvocet. I only take the darvocet if i am in bad pain and it pretty much works. I also take medicine for my headaches when I have them and it pretty much works (can't remember the name though). I looked on the website for doctor in town and they do not accept any insurance so everything will be out of pocket *which is not in the budget at this time*. So I emailed my doctor on Tuesday with the link to the website and told her I wanted to try it but haven't heard anything. I know doctors are busy because I work for about 15 oncologist so I wanted to give her time to look at it and I am sure it isn't on the top of her list of to do's like it is mine. I was just wondering if anyone has done it on their own. I think I am in tune with my body enough to manage the dosing so I don't think that would be an issue...just kind of scared of the feel worse before better. If I miss too much work will have to go out on FMLA and will me my doctor to sign off for that so I figure if i can get her to buy into the guaf treatments it would be easier if I need FMLA. This is a big step to take but I am tired of half-living my life.
  8. seaview

    seaview New Member

    I would have chosen to go on the guai whether he (doc) agreed with me or not. Sonce I am just establishing a relationship with him I felt it was important to his trusting me that I approached the way I did. The next thing I will be approaching him about is the mycloplasma thing. I need to feel more confident in my understanding of it before I try that one. He does know I am actively searching for answers. He actually asked me what opinions I had found in my research regarding the cause of FM.I actually had a total brain fog moment since that was not on my list to talk to him about. I said a couple of things(I actually cant recall right now) but next visit I will come prepared to answer that one. At least he is curious and interested enough to listen. Anyhow, yes I do believe you have to do what is right for you at all times. I had just wanted to clear up why I had approached my new doctor this way. Where I live we are about 300 doctors short and so I only get a visit every 2 to 3 months.He is sooo overworked! Again, I hope you find whats good for you....Kathleen
  9. TNhayley

    TNhayley New Member

    If you are just starting guai or considering starting guai check out the support group listserve on their site. (I like the digest version because there are a LOT of emails) This is truly one of the most positive groups I have seen on the net. They will walk you through every aspect of the guai protocol and offer great insight in HG (hypoglycemia) issues, as well as good recipes to help you get started - if you are HG. I've been on guai since spring '01 (one guai-break which was a mistake), and you couldn't pry it from my grip. Since I'm new here I hope it's OK to recommend other support groups. :)

  10. Mikie

    Mikie Moderator

    Time was here when there were just a couple of us on the Guai treatment. Guaifenesin is such a benign medication that it is sold OTC and is carried here.

    I would suggest that anyone whose doc would not write the Rx to just go it on your own (and look for another doc). In this treatment, the patient is the one who should be deciding the dose, not the doc. Starting out slowly is very important. Too many people have started out taking too much and then going off the treatment because of prolonged and painful flares. Many of us are extremely sensitive to medications. It's always preferable to have to increase the dose to get to the ideal dose which allows cycling of symptoms. Remember that a flare and pain means the Guai is working.

    Love, Mikie
  11. Tibbiecow

    Tibbiecow New Member

    I just HAD to do it. I really did need a good doc, though. As I said before, pain management has become a major issue for me. The farther in I get, the more pronounced these swings get. I fell GREAT and can do almost anything, then feel really crappy and need lots of pain meds, migraines, etc. I think my body is getting more sensitive to the reversal flares. But I read the book and I WANTED MY LIFE BACK!!!!! And I am convinced that I will get through this and hardly ever see these pain meds again. Good luck,
    P.S Get another copy of the book and give it to your doctor and tell her YOU WANT TO DO THIS!!!!PLEASE!!!!!!READ THIS and if she isn't closed minded like the rheumy I fired you could be in great hands![This Message was Edited on 04/04/2003]
  12. Dayle

    Dayle New Member

    2 questions 2 answers.....HG=hypoglycemia.......I have food allergies to all milk products & found that taking the guai makes me even more sensitive.
  13. IndigoSC

    IndigoSC New Member

    can you get guaifenesin over the counter or do you have to get a doctor to prescribe it for you? I'm willing to try anything, but don't have a doctor.
  14. James

    James Guest

    We have a special arrangement with the manufacture of the time released version that Dr. St. Amand uses and have it available through Immunesupport:
    <a href="https://www.immunesupport.com/shop/product.cfm?product__code=PH176">https://www.immunesupport.com/shop/product.cfm?product__code=PH176</a>