Guai Ladies, again, Please?

Discussion in 'Fibromyalgia Main Forum' started by janieb, Jun 11, 2006.

  1. janieb

    janieb New Member

    Hi,

    I'm confused, again or still.

    Continued my dosage. Yesterday was pretty good or about normal, which means pain, but as bad as the day before.

    Today - I'm achey, have chills, periods of the runs, and just feel really crappy. Did spend lots of time reading the book again last night and it describes this as flu like symptoms. That seems pretty close.

    Yesterday I did notice some bubbles and tiny specks floating on top of the stool.

    Sorry to keep bugging you.

    Is this what's going on?

    janieb
    [This Message was Edited on 06/11/2006]
    [This Message was Edited on 06/11/2006]
  2. Jude

    Jude New Member

    From the information that you have given, it sounds like you are probably cycling.

    Jude
  3. Mikie

    Mikie Moderator

    In the beginning, it is important to notice the small things which can signal whether the Guai is causing cycling. It appears from all you have written that this is happening.

    At the same time, we have to look at what is happening over time and each day taken separately doesn't provide enough info to definitely say if the Guai is working or not. We can hurt for other reasons and we can get viruses which can cause symptoms too. A week is a pretty good indicator of how things are going. Keep a journal and see if you can spot patterns. That is the most helpful.

    Best of luck.

    Love, Mikie
  4. janieb

    janieb New Member

    Thank you. I am keeping the journal. Will look at it at the end of the week and see what I find.

    Hurting everyday is not an indication, since there's rarely a day I don't hurt, but Friday was exceptional.

    Apparently, there can be days during the week or hours, when I feel fairly well.

    Will get back to you when the week is up and see what you think then.

    Sorry to keep requesting information, but I'm new at this and I always like to know what to expect.

    Thanks, again.

    Blessings,

    janieb
  5. bigmh

    bigmh New Member

    Sounds like things are cycling for you...you've heard from the experts already, but I also wanted to encourage you to journal your symtpoms. At my last dr's appt. (10 days ago), I was able to read out of my journal just how I felt at particular times, and it was so helpful. My poor brain couldn't possibly remember how I felt 10 days ago let alone 3 weeks ago!

    For me, journaling helps me to reflect on just how I feel, and putting it down on paper helps me see the hours or parts of a day that are better. Otherwise, I might miss them.

    I've been on this protocol for 3 months (since 3/9/06), and although they are sparse, I have had some better hours. I am dealing with some kind of an inflammatory condition, too, which is complicating things. For that I have been taking prenisone which really helps the joint pain and sometimes muscle pain, too. It's never just 1 thing with FMS, huh?

    Keep on takin' the guai, Janie, and watch for those sals. I hope that you have subscribed to the guaidoc message board or have searched the archives because there are so many success stories where guai has helped people of all ages around the world.

    Gotta run and check the cherries...good luck on your berries.

    Love and Blessings, Ann

  6. Mikie

    Mikie Moderator

    Glad you are having some good hours. Sometimes, reversal comes in small victories but they come more and more often and last longer. Dr. St. A says that for some, it's just a fleeting feeling of well-being which only lasts a short time.

    I have something in my right lung which has caused costo chondritis. I had a rough time when the Red Tide came in and haven't been the same since. I've been on my inhaler, which is very rare for me. I have a cough and that side of my body hurts. I've decided to increase my Guai about double but will also use Ben Gay on my chest. That way, the Guai should help clear up my lung without causing a massive Guai flare. Hope it works.

    Love, Mikie
  7. bigmh

    bigmh New Member

    Good to hear from you, Mikie....so sorry to hear that you are ailing. What is the condition costo ?? And you mentioned red tide...we have that sometimes in the coastal waters here in Washington state, but I thought to be affected you had to eat shellfish with red tide? I think I have a lot to learn! Anyway, I'm so sorry about your setback. You were already feeling under the weather before this.

    Does a nebulizer help your lungs? My kids had one while they were young and had bad asthma. It helped them stay out of the hospital. Fortunately they have mostly grown out of asthma.

    The doctor is unsure as to what is going on with me. I have a lot of joint pain but am negative for RA or inflammatory arthritis. However, prednisone seems to clear the condition up. So maybe I am just a negative RA person with RA? We're unsure but experimenting. It does complicate the whole picture. It's never simple, huh?

    My post about journaling is a lesson taken from you. You said to watch carefully for good hours, and it has helped me a great deal. I appreciate even the smallest times of feeling better. I tell my husband that I know I'm feeling better when I don't think about hurting! Anyway, thanks to you for the caution to watch carefully.

    I've also been able to increase my exercise. I'm entered in a contest at the gym for frequency of exercise...they are giving away some free classes and a T-shirt, so I signed up. I'm doing the elliptical for 30 minutes and some weights, carefully. I'm competitive, so it's helped to be committed to the contest. I really believe the increased exercise has helped me. I'm also swimming and walking on the off-gym days...not always, but most days.

    I hope that you are not experiencing anything bad from the tropical storm Alberto (I think that's his name). We grow cherries and are battling rain and thunderstorms. So far so good, but we don't need any more rain!!

    Love to you, Mikie, and I hope that you feel better soon. I'll keep you in my prayers.

    Love, Ann

  8. Mikie

    Mikie Moderator

    My love and prayers to you too. I'm so glad that journaling has helped you. I've done it in the past but I've been at this for so long that I usually don't need to do it much anymore. I will probably be keeping my temperature, BP, and notes for a while until I get rid of this crud. Costo chondritis is inflammation between the ribs right up against the sternum. It usually follows asthma, bronchitis, pneumonia or anything which can cause inflammation in the are. A shot of cortisone will put a quick end to it but I prefer to only use steroids as a last resort.

    Speaking of which, have you gone to The Roadback Foundation website? They are treating RA with antibiotics with really good results. I know that a lot of people don't like ABX, but they really helped me. I got up sweaty after Herxing last night. I am running a slight temperature and will likely add Doxycycline today. The mycoplasma infection will try to reactivate if I get run down with something else.

    You are right; this whole ongoing saga started with stomach flu right after Easter. Then, came the Red Tide. I haven't been able to get rid of the bronchial problem on the right side since then. I had asthma in CO but it went away when I moved to FL. The Red Tide can wash ashore, dry on the sand, and the spores can blow inland for miles. It can cause breathing problems and it attacks the central nervous system. The attack on the CNS is what causes the massive fish killoffs when Red Tide is concentrated enough. The worst Red Tide seems to be in the Gulf. I won't eat anything caught in the Gulf; it's a sewer.

    I hope your cherry crop is good. I just bought a big bag of Bing Cherries yesterday. Yummmmmmm! Also, good luck with the exercising. I used to love to work out at the gym. Unfortunately, with CFIDS, it's really hard to do. I hope you win the contest.

    Love, Mikie
  9. bigmh

    bigmh New Member

    Good Morning, Mikie! Thanks so much for the note. I appreciate your explanations of what you are dealing with. I will continue to keep you in my prayers. We don't need any more things to combat!

    I will check out the website that you mentioned...thanks for the info. I really don't think that I have RA as I don't have red, hot joints, but I do have some of the other symptoms. I think that it is FMS and its tentacles that are causing the problems. For now, I am enjoying feeling better on the prednisone (although like you, I don't like taking it long-term or at all if I can help it). It is a real balancing act between the meds, their side effects, and how we feel.

    I hope the AB's help your situation and that the winds from Alberto won't kick up any more lung problems.

    I'm glad that you liked the cherries! We grow Bings and Rainiers, and will hopefully start picking this weekend. At the moment it has been raining since yesterday....ugghhh. We don't have too many splits yet. It is a stressful time of year, and we are praying for the rain to stop.

    Well, I'd better get sometime done around here. Love to you, and I hope today is a better day.

    Blessings, Ann
  10. janieb

    janieb New Member

    Sounds like both of you have had better days.

    Interesting that you raise bing cherries. My husband bought some once from a produce auction, and, not being the outdoor type, I pitted them and froze them for pie fillings. What can I say, I was a townie.

    Still having some rough days when I just don't want to get out of bed. Making it to the fitness center, keeping my journal,and still staying on the dosage, but that's about it.

    Did I read in the book that the left hip is where fibro starts. I don't know where this great pain in my left hip came from, but could it be part of the cycling?

    Hoping you all start feeling better very soon.

    Blessings,

    janieb
    [This Message was Edited on 06/13/2006]
  11. bigmh

    bigmh New Member

    I hope that you get to feeling better, too, Janie. At least with the guai, we know that the pain is for a reason!

    I have been exercising more than when I first started the guai. Overall, I am feeling better.

    All for now...hope tomorrow is better for you.

    Blessings, Ann
  12. Mikie

    Mikie Moderator

    I pray we all get to feeling great!

    Janie, for some of us, pain in the hips is where we first noticed FMS. The Guai often starts pulling the debris from the oldest sites first. That may explain the hip pain. If the pain includes burning, you can almost bet it's the Guai working.

    So far, the extra 400 mgs. of Guai I am taking for my bronchial problem hasn't caused a Guai flare. It's likely because I'm so close to being reversed. I may increase the Guai even more to try to get rid of the bronchial problem. Taking both the doxycycline and Acyclovir, along with icing my chest and taking Ibuprophen, is helping too. Acyclovir makes me feel lousy but my ins. no longer covers Famvir. I think I'll ask the doc for an Rx for Famvir and get it from COSTCO and pay for it myself.

    Hope y'all have a good day.

    Love, Mikie
  13. bigmh

    bigmh New Member

    Good Morning, Mikie...it's good to hear that you are not in a flare. I will pray that you can balance your medicine and defeat the enemy!

    I have a question for you...I have an ulcer which after several years of being under control is returning...ugghh. Have you had any experiences in this area?

    I was on Nexium, but the insurance co. changed me to OTC Prilosec. It has been working, but the last few days (with the stress of rain on the cherries, I think), the ulcer pain and heartburn/GERD is returning.

    Thanks, Mikie...hope today is better for all of us, too.

    Love and Blessings, Ann
  14. Mikie

    Mikie Moderator

    I really don't have experience with ulcers. Has your doc tested to ensure yours isn't caused by a bacterium? Many have improved following treatment with ABX. One unexpected benefit of the Doxycycline for me was that it got rid of my IBS. That leads me to believe that, at least some, IBS is caused by a bacterium.

    I hope and pray you feel better.

    Love, Mikie
  15. janieb

    janieb New Member

    and Thank you.

    Today is a really good day so far, and there's no reason why it should be.

    AFter two nights of no sleep, I did fine last night. Today my niece called to tell me they needed $5500 to not lose their home. She doesn't want to ask her Dad because she's afraid he'll turn her down.

    I've loaned her money before and she's very prompt in repaying it, it wasn't that much. We really don't have the cash right now and I hate to cash in investments, but will see what we can do to make it easier.


    First they have to change their lifestyle and stop thinking they need everything. They're loving, giving people, but they both overspend and have no patience to wait for anything they want. That is at the root of their problems. They have refinanced their home until they have no equity left in it.

    Anyway, it's a one time save and I plan to lay down the ground rules, whether they like it or not.

    Thanks for my tales and giving me good advice.

    Hope you're both feelling better today. Without your expertise, I'm not sure what I would have done. The hip still hurts, deep down, but I can't notice any burning.

    Blessings,

    janieb
  16. bigmh

    bigmh New Member

    Thanks for your responses, you two!

    Mikie...my ulcer is not caused by H. Pylori...interesting as most are. It is better today, but seems to act up at night. We'll see how I do tonight.

    Janieb...I'm so glad that you're feeling better! I hope that it lasted through the day...whooppee!!

    Regarding your niece...it seems that many young people today cannot wait for things they think they need and cannot save. I am trying hard to help my college-aged children to learn to save and not spend. They are both bargain shoppers most of the time, like I am, but the culture's tendency to need everything right now is hard to combat. Your ground rules seem like a good idea.

    Well, it's stopped raining on our cherries and I think we still have fruit to pick....I'm very thankful! I hope you are feeling better, Mikie...and that we all have a great day tomorrow!

    Love and blessings, Ann

[ advertisement ]