Guai ladies...

Discussion in 'Fibromyalgia Main Forum' started by maxsy1221, Jul 15, 2006.

  1. maxsy1221

    maxsy1221 New Member

    OK....as a "newbie" here......a few questions.....
    I know laundry soap isn't bad because it washes out....but what about
    softener or softener sheets??
    What about cleaning products?????
    You know, clorox wipes or windex wipes or whatever"cleaning stuff??"
    What about vitamins?? magnesium or sleep aids??
    What about perfumes???
    I know all this sounds overwhelming but.....my body wants to desperately heal with Guai so my brain is just asking all this stuff!! My mind won't relax!!((((sorry))))............Thanks.......((for allowing me in the group!!)))
    pam
  2. bigmh

    bigmh New Member

    Good Mornin' Maxsy...I have only been on guai since March, but will try to answer some of your questions....

    softener/softener sheets...I use them (sheets) and don't think that they block us

    cleaning products...some dish soaps will block you and some other cleaning products, too...I use Ivory dish soap which is OK, and otherwise wear gloves to clean.

    wipes...I would wear gloves.

    vitamins...there is a lot on guaidoc.com about this, but I am using the Kirkland brand equivalent of Centrum Silver. There are certain things that we have to watch out for in vitamins like rose hips and other natural things.

    magnesium is OK...I use the ZMA for sleep that is sold here.

    perfumes...they recommend that you put them on your clothes or spray them in the air and walk thru the mist as some can block.

    I hope this helps...I know that I had a million questions, too, when I started. The guaidoc.com website has a sign-up for their e-mails, and I have learned a ton from that.

    Have a good day, Masxy...love, Ann
  3. Smiffy

    Smiffy Member

    Use gloves to handle cleaning products - it saves having to read all the ingredients! I pick the tumble drier sheets up with a corner of the laundry I'm doing.

    Most perfumes will block & I think that walking through the mist would block. You can put them on your clothes that don't touch your skin - I put them on the bow on the front of my bras - but don't get them on your hands.

    Magnesium won't block. Herbal sleep aids will block.Most vitamins will - go to your Guai group for a list of sal safe products, you can access it from the link here:

    www.fibromyalgia treatment.com

  4. Jude

    Jude New Member

    Dear Pam

    Dryer sheets are manufactured with a wax that melts with the heat of the dryer. Waxes will not block, so the sheets are safe. If you are sensitive to fragrences you might want to try Fragrence Free All (Dryer Sheets).

    Jude
    [This Message was Edited on 07/16/2006]
  5. Mikie

    Mikie Moderator

    I don't wear perfume as I'm afraid it may make someone else sick. I get very sick around people who wear certain brands.

    If someone is running a dryer with the scented sheets, it will trigger breathing problems for me outside. I also use detergent and liquid softner which is free of scents and other allergens.

    I think our environment is already overscented. JMHO.

    Love, Mikie
  6. maxsy1221

    maxsy1221 New Member

    Thank you ladies for responding. I sat today and read Dr. Amands WHOLE book. Took me several hours but I want to get this thing going!! I started on guai 3 days ago but today((day 3)) is the worse. I had a migrain all night and day. I havent had one of those in a while. (everything else hurt tho!!)) I have yet a few more questions....((I hope to not be too pesty!!)) : ) But...
    What about acrylic nails or the gel salons use. I had my nails done 2 days before I started on Guai........Besides the killer headache today, my vision is getting worse. Does Guai make you get blurred vision?? Is that part of my cycling or is it to soon to cycle...((3 days so far....))....also...how long does
    cycling last when it happens?? I just started right off with MUCINEX 600X2.
    Could I still get well on 600 x 2?? Even if I didn't cycle. I mean is it neccessary
    to go higher??? Couldn't you still get well ((even if it took longer to do so))...just wondering. I hope I've been making sense.......Thank you all for your kindness and input. Pam
  7. Smiffy

    Smiffy Member

    Some hair gels will block - you need to find one from your Guai Group list. I don't know about acrylic nails, but your own nails should improve eventually on the protocol.

    If you are reverse cycling at your present dose you certainly don't need to go higher. As you know, the advise is to start at a low dose & buid up to the one where your symptoms ecome tolerably worse. Some people reverse on a lower dose; if you are feeling 'slammed', lower your dose. Going too high will mean that your body cells are ridding themseves of phosphates into your blood stream faster than your kidney's can cope, & you will redeposit the phoshates that can't be excreted. All that extra pain will be for nothing!Here's the list of hair products you can use:



    http://www.fibromyalgiatreatment.com/PrHairProducts.htm
    [This Message was Edited on 07/17/2006]
  8. bigmh

    bigmh New Member

    Hi Maxsy...so sorry about your migraine. I get those too...hope it is gone by now.

    I had acrylic nails when I started the protocol in March, but have let them grow out. My own nails are back and stronger since using guai...whoopee! The whole reason I got acrylics was because my nails were all ridged and broke at the quick very easily. The general feeling is that your nails are dead so unless you get polish on the cuticles or skin, any polishes are OK. There are sal-free polishes listed on the guaidoc.com website.

    Hope this helps...love, Ann
  9. Mikie

    Mikie Moderator

    Is important in the beginning. On the one hand, you need to be keeping a journal and making not of everything. On the other hand, each day, taken by itself, isn't enough to base your progress or dose on. So, watch what is happening but do not become anxious over every little thing. It's hard to do in the beginning because everyone is so excited and wanting so badly for this to work.

    In time, and you have plenty of time, you will begin to see the cycling. The protocol is to start out at 300 mgs. twice a day. There is nothing wrong with starting out at 600 mgs. twice a day but it could cause too strong a Gaui flare. Better to start out slowly and build up if need be. Over time, if you want to speed things up, you can increase the dose. I did. If you aren't having a bad Guai flare at the 600 mgs. twice a day, you can stay on that and see what happens. You might even have to increase it if you don't cycle. If you don't cycle at the present dose, you might want to take another look for hidden sals before increasing the dose.

    If you just go along at too low a dose without flaring, you may be able to excrete the phosphate debris on a daily basis but it won't go in and pull out the debris from where it is stored. In other words, you will stay where you are. When you are finally reversed, this is what you want--a maintenance dose. For me, it's 400 mgs. twice a day. I consider myself reversed.

    So, Kiddo, relax, keep a watch on things, and make any changes after you have had a chance to see what a week or so on the Guai has produced. Good luck.

    Love, Mikie
  10. maxsy1221

    maxsy1221 New Member

    Yes.....anxious might be the right word. I know I need to calm down. But I don't have a fibro doc, and my normal GP won't give me anything because I think she thinks its all in my head....so on and so on.....I've hurt pretty bad before the guai, so whats a little more?? Would I be experiencing things already even tho its only been 4 days?? I'm thinkin the migrain yesterday was part of the cycling. As we all know, we had good and bad days all along...how can we distinguish that from a cycling day?? Just 2 or 3 weeks ago I had 2 or 3 good days. Overdid to catch up....then down again for a few days. Am I making sense? And the left leg that Dr. Amand talks about...I feel no lumps or bumps . My legs ache off and on anyway. My fibro appears to be mostly upper body. Sometimes I just want to cut my arms off!! My hips and legs off and on.
    So I won't go higher than 600 x2 for now. Guess I'm just confused about cycling when I've had good and bad days all along. I don't map but I've been writing a pain scale (( 1-10))........so when it gets to an *, how long does one have to cycle? I'm following the list of products EXACTLY. I have my handy
    little scope to read EVERYTHING. I DO want to be doing this. I DO want to reverse this. I just want to make sure I'm doing right. I don't want to be doing this and in 1 year still be the same!!! Does anyone here take an antidepressant?? Thats suppused to dull pain a little. But then how can you figure out your Guai dose?? I'm not on anything but this is getting to me REAL bad!! xoxoxo thank you for listening to me whine : (
  11. bigmh

    bigmh New Member

    Hi again, Maxsy. I think Mikie's advice to relax is the best thing. We are in this for the long haul and will see ups and downs along the way.

    I don't have a doctor helping me either...we don't need one really. With the book and help here and on the guaidoc.com website, we can do this. You will learn as you go, just give it some time.

    I do take an anti-dep., Lexapro. I tried it without anything and I was an emotional mess. For now it really helps.

    Love and blessings, Ann
  12. maxsy1221

    maxsy1221 New Member

    Thank you Ann....
    Am I being to pesty?? I sure don't want to be....I am so sorry if I am.... :(
    I AM taking it easy......((too easy maybe!!))...I know it's going to take a long time. I can handle that part.........I'm just wanting to be at right dose...That's the hardest part for me. One thing I'm noticing is...I feel soooo dried up.
    Like I'm more thirstier then usual. (pre-guai)....also i keep having that "crusty" gunk in my eyes and a little blurred vision. All this AFTER starting guai. Also
    the headaches are more prominant then before. PLEASE tell me that I found my dose!! I only wanted an AD to help me thru this.(pain&emotion)....that's why I asked about it. I bought gloves today to use "whenever" I clean. LOL
    .......Thanx for replying..........Pam
  13. Mikie

    Mikie Moderator

    You are just like each and every one of us when we started. That's why I'm trying to ease your concerns a little. I remember what it was like.

    You hit the nail on the head. How do we know whether it's cycling versus the normal ups and downs? I would say that you will know you are cycling when the Guai flare is a bit worse than you would normally feel when you are flaring. The well-being produced by the Guai can be very fleeting in the beginning but eventually, you will recognize it.

    Look at your urine. If it is bubbly and/or appears to have a tiny bit of talcum powder floating on top, the Guai is probably working. The phosphates can make the urine bubbly. The crystal debris can appear like talcum powder. Also, your urine may take on a different smell. Not a bad smell but a little stronger than normal and different. If you sweat and it crystalizes when it dries, it could be the debris coming out in your sweat. Your sweat may smell different too. Mine smelled just a bit sour at first.

    Again, I tell you this, not to make you anxious over little things, but to give you some things which might provide clues that the Guai is starting to work. Like with everything, not all of us are affected alike.

    Love, Mikie
  14. Smiffy

    Smiffy Member

    It sounds as if you've found your cycling dose; stick wih it for four weeks & see how you go. You're not a pest - this board is for supporting each other, isn't it? If you join the Guai Group (link at the fibromyalgiatreatment website) you can have a daily digest of their message board sent to you. This is very useful as you can obtain expeert advice; Dr A's nurse posts on it.

    I take 5 or 10 mg Amitryptiline (however I spell it, it doesn't look right) at night for pain, & other (not asprin) painkillers as necessary. When I'm cycling back pain, I use those air activated heat pads that stick on your clothes; they're on sale in pharmacies.

    Well done on using those gloves! I found orange oil in my furniture polish - we have to be careful.[This Message was Edited on 07/17/2006]
  15. maxsy1221

    maxsy1221 New Member

    Oh you girls!!!!!!
    Your such a GODSEND for me!!! Well, I did notice today the so called
    "tiny bubbles" in the toilet....and the smell?????? EEEWWWWW!!! So...is that a "sign" the Guai is working??? If so....YAYYYY!!! It just has to be because my headaches are more then I've had in awhile.......I'm managing all in all. The few hours of relief I've had ((even tho temporary)) is still relief.......Now my other questions or two are........do I stay on this dose forever??? I mean I can DO ANYTHING forever as long as it works!! Can I ask what's the longest anyone has been pain free?? I know Mikie considers herself "free"...how long has it been??......I've given up a ton of carbs too....Not ALL the way because that would be impossible for me. I was tested last year for hypoglycemia but
    it was normal......even tho I'm significally overweight....(due to inactivity and drugs I use to be on)....and I know we are supposed to move but girls, excercise is the one thing I have ALWAYS detested!!! LOL...I don't get it. Some people I know can't live a day without it but me????NNNNOOOOO.....lollol
    Even tho I should. I bought myself stretch bands and do that a few minutes here or there but thats about it. I need to be hypnotized or something because that's where I SERIOUSLY have a blockage!!! Does Guai work for that??((I wish)).......lol.....anyway....I sure just hope I'm at the right dose!! I love this site. I learn more here then even the fmaware site. I did sign up for Dr. Amands site but OMG...it is sooo confusing. I think I will just stick here if you all can stand me... : )
  16. cymbeline

    cymbeline New Member

    Sorry to seem stupid. What is guai?
  17. Mikie

    Mikie Moderator

    The progress on the Guai is gradual. After I got to be about 80 percent reversed, I almost never took anything for pain except for the occasional headache. I started the Guai five years ago and it took about a year before I could stop taking the Morphine for my pain. Then, I took OTC meds when I needed them. I would have several weeks sometimes when I felt well. I also had flares. If I injure myself, I will have pain which feels just like the old Fibro pain. I think our bodies stay tender for a long time before those old tender spots truly heal.

    I no longer have the Fibro flares but I do have relapses of my CIFDS when I'm so exhausted and feel so fluish that I can't do much but lie around. I blame a lot of it this time of year on the Red Tide which makes a lot of people ill.

    Cymbeline, Guai is short for Guaifenesin. If you go to the Guaidoc.com website, you can read more about it. It's just too much to put in a post. If you think you might like the treatment, get the book and read about it. Sorry I can't be more helpful but I think it would be more helpful for you to be able to read about the treatment at the website.

    Love, Mikie
  18. cymbeline

    cymbeline New Member

    Thanks for pointing me in the right direction.
  19. maxsy1221

    maxsy1221 New Member

    A quick qestion(((for once!!)))....
    Is it ok to take Silymarin Forte?? Natural doc wants me to take for my liver..also Co Q10 , phosphatidyl choline, and L-Carnitine....all for energy and liver..Is this ok? Thank you.......xo pam
  20. Smiffy

    Smiffy Member

    Sorry, don't know if those are herbs or not - hope someone elso does.

    Here's what the administrator of the UK Guai Group says about exercise:

    "Yes exercise will release endorphins but it will do even more than
    that. It
    will help to increase your mitcochondria in those soft tissue cells.

    As we find we cannot exercise due to the pain and fatigue, the body
    gradually allows the number of mitochondria (energy engines in Dr St
    A's parlance) in
    the soft tissue cells to diminish. Fewer energy engines means less
    overall
    energy can be produced. So although our bodies are losing the
    phosphates from
    the soft tissues until we create more energy engines (mitochondria) we
    will
    fail to gain the full benefit. More energy engines more energy to
    exercise
    so even more endorphins - talk about everlasting cycles!!!! Sorry pun
    half
    intended!!! LOL

    However just don't go overboard with exercise. Remember the Energy
    Bank
    Account analogy.

    For newbies exercise may seem to be an impossibility but even a few
    stretches each day and a walk of just a few yards, building up over
    weeks and months
    not days and weeks, will help us to create a few more endorphins and
    then
    start to build back the mitochondira."