Susie Smith

6 1/2 years on guai...This is my 6 1/2 year anniversary on guai.  Before starting the protocol, I was homebound for 2 years. I made myself take a shower and get dressed every day. I was so exhausted from doing that, the rest of the day I sat outside and watched the birds or sat in front of the TV not really knowing what I was watching.  Everyday I wished I were dead. I couldn't carry on a conversation because I couldn't get the words from my brain to my mouth.

I was on three different pain medications and my pain level was at best a six,

but mostly 10+. I had 12-20 migraines a month, and of course another medication for migraines.  I walked like an old woman. One of the few times I was able to attend church a friend of mine who hadn't seen me in awhile saw me from across the parking lot and wondered to herself "Who is that old lady?"

We no longer went out socially and eventually people stopped inviting us to events. Our, my husband and my world, was lonely.  He would work all day and return home to cook and care for me.  I could give nothing in return. I couldn't stand to be touched, it hurt too much.  It even hurt to wear clothes, so everything had to be loose fitting.  My sweet husband never complained.

Trying to sleep was torture.  In bed for a couple of hours and up, trying to get comfortable was impossible.  Anywhere my body touched the bed throbbed after a couple of minutes.  I was exhausted all the time.  My legs felt like I was walking in quicksand.  My muscles rebelled with pain at each step. I was hopeless..........

Then came hope.  I was given "What Your Doctor My Not Tell You About Fibromyalgia" when I was first diagnosed with fibromyalgia, but wasn't sick enough, I guess.  I looked through the book and thought. "that's too hard" and returned the book to the lender.  So, I tried everything else.  BUT continued to get worse.  One day I read in the paper Dr St Amand was speaking locally.  I wasn't able to attend, because my daughter was having a baby shower.  A baby shower for a child I knew I could never hold for long due to the weakness and pain in my arms. I remembered about his book and got on the website and read.

Reading was a challenge because I couldn't remember anything I read.  I put a note book next to the computer and wrote down things I wanted to remember, writing the same things over and over each day.  I read the on line support group daily trying desperately to understand. 

After four months on guai I woke up one morning and where my body was touching the bed wasn't throbbing.  I knew a that moment the protocol worked and I had to go see Dr St Amand to thank him.  Up until then I didn't know if I could trust him; I had been burned by so many "well meaning" people. Well, anyone who knows the saint, knows he is a lover of people.  I love that man.  He gave me my life back.  I love Claudia who has given sacrificially so we can get well.  I love the admit team who volunteer their time to "give back" because they were given to.  We are blessed by these people.  Thank you : )

So, where am I today? 

Way too busy to be sick.  I feel really good most of the time.  The 6th year was the turning point for me.  I am a low doser who cycles hard all the time.  Even today I can take my gaui and "feel" it, but the pain is doable.

 I don't take any Rx pain meds, except for the once in awhile, (every few months) migraine I get. 

Yesterday, my five year old grandson (the one I wasn't going to be able to hold) and I were doing underwater somersaults.  I swim several times a week with him and his 3 yr old brother and watch them often.  Aidan, the 5 year old, has been diagnosed with a disease that will rob him of his eyesight. Rather than having a pity party, my daughter has gotten involved with Foundation Fighting Blindness.  She organized a dinner auction in May for 180 people and I worked along side her for the months before. What a blessing it has been for us to work together for such a great organization.  I had the energy to help her and even danced at the event. It was a

wonderful evening.

My husband and I have taken dance lessons together. I do line dancing once a week.  We are planning to join the photograph club. I take watercolor lessons with my 2 sisters.  I'm on the social committee where I live helping to organize once a month events and set up and clean at the events. Go to coffee and lunch with friends. Take my 89 year old mother shopping and to doctor appointments. Six years ago I couldn't even keep up with my mother. 

This year has been a difficult one for us.  My husband is facing his third surgery this year.  He had emergency surgery in January and was in the hospital for 7 days.  I wouldn't leave his side.  I slept on the floor on a couple of blankets.  I'm not saying that so you will say "Isn't she wonderful"  I'm sharing it because I slept on the floor for 6 nights! That's a miracle.  I expected to crash once we got home.  Never happened.  I just keep on going and going and going...  Don't get me wrong; I have learned to pace myself in the last 6 years, but I'm almost 60 so I think some of that would need to be anyway. I want my  husband to know the unconditional love and care that he gave me during those years when I was so ill. He was the best teacher I could have had. We will survive this and hopefully be better for having gone through it. 

I believe God doesn't waste our pain. He allows us to walk through it, learn to be better people and then gives us opportunity to walk with the next person.  We are the blessed ones; the ones on guai getting better. There

are so many suffering people out there. Get better and then give back to those hurting.

Susie Smith : )

Morgan Hill, CA

59 years old and getting younger everyday

600 guai, thyroid med, sleep apnea, PTSD

Happily married 41 years

Laurina Ghiglione

Six plus years on the guaifenesin treatment...I was diagnosed with fibromyalgia in 1995. I was experiencing symptoms for 2 years prior to that. I was working as a registered nurse at the time and often while at work, bouts of pain, fatigue and severe mental fog would come on suddenly. I often remarked that I felt like I’d been run over by a truck. I was overwhelmed with diffuse pain, profound fatigue and mental fog and came close to fainting several times. Many times a replacement nurse was brought in to finish my shift.

 At the time, I had only heard about fibromyalgia but really didn’t know anything about it. When I first picked up a pamphlet on FM, I couldn’t believe what I was reading-the pamphlet described my symptoms perfectly. It was as if it had been written about me. I began attending a local FM group but soon dropped out because everyone seemed to be so much worse than I was.  I had the attitude that if I continued to exercise and tried to lead a normal life, then I would be able to conquer this condition.  After all, this is what all the doctors and specialists recommended. In fact, I was told by a leading rheumatologist,” Whatever you do, don’t quit working” “Regular exercise is the key to managing the “syndrome.”

By February 1997, I was no longer able to cope with 12-hour shifts and the stress of nursing and I was forced to take sick leave. The FM had progressed quite rapidly. I was at my worse during this period. I was in bed about 16 hours a day. With sheer grit and determination, I started to do about 5 minutes of exercise daily. That would exhaust me so much that I would have to rest for an hour following my exercise. Very gradually, I was able to increase my endurance level.

Still determined that I could rise above this devastating condition and under pressure from the disability people, I enrolled myself in a rehab program in April of 1997. There I received intense physiotherapy with the goal being to get me back to work. Six months later, I became increasingly worse and my doctor advised me to withdraw from the “back to work” program.

 I saw many different doctors including a psychiatrist who was treating FM and CFS. He diagnosed me with a mood disorder and put me Paxil, Serzone, and a monthly regiment of intravenous vitamins. That lasted about 7 months when I gave up and went off the medications as I felt they were doing more harm than good. So that blew the theory that ”it’s all in your head”. Yes, I probably was suffering some depression--who wouldn’t be? When you can’t function due to pain, fatigue and mental fog, it’s easy to be depressed. The cognitive and memory impairment is the hardest to deal with.

I also tried many other herbal remedies and other medications designated for the treatment of Fibromyalgia. I found that many of these meds did seem to help for a short time but they only treated the symptoms and not the underlying cause of the disease, and the side effects outweighed the benefits.

After a time, I gave up on the so-called treatments for FM and took matters into my own hands. I went off most of the medications and began treating myself, taking only Amitriptylline to help me sleep. I tried to walk 4-5 times per week. Weekly massage therapy really helped me get through the days and weeks. I attended many seminars on FM and did a lot of research and reading.  I never did return to work-I was on disability for 2 years, I applied for long term disability, was refused, I appealed and in the end I gave up the fight as the stress of it all was just making me worse.

Then I found Dr. St. Amand and the Guaifenesin protocol.  I picked up a copy of Devin Starlanyl’s book” Fibromyalgia & Chronic Myofascial Pain”--a survival manual. Dr. St. Amand and the guaifenesin protocol are mentioned in her book. I ordered a copy of “What Your Doctor May Not Tell You About Fibromyalgia” and I began the protocol. At first, I tried the protocol on my own, taking the Canadian Fludan guai for 14 months, then I saw Dr. St. Amand in January 2004 and started on the MDR guaifenesin

I still have “bad cycles”, but they’re so much more tolerable than before and they don’t last very long. I know those will improve with time. I now function at a near normal level. I exercise nearly every day. I golf, I can travel and attend social functions, cook and look after my house. I’m now back to playing in Scrabble tournaments—my brain functions again! I don’t take any medications other than the guai, Calcium and Vitamin D.

Guaifenesin does work –it’s not easy and it does take time but it will reverse fibromyalgia. I just wish I had found out about it sooner. Just keep the faith, stay away from salicylates and be patient.

Laurina, Retired RN 

Update February 2008... I had another mapping in Nov. 2008 and I am making good progress. Still, I have a ways to go. We are in Mexico for the winter and I have been very active physically. I started using walking poles at home and here, I walk the beach with my poles. Twice I have done a 12-kilometer walk.  I can hardly believe that I can tolerate a 12 km walk or hike when 10 years ago it was all I could do to get to the bathroom from my bed.

Jeri Hird Dutcher

11 years on the guai treatment...I woke up that morning in October 1996, sat on the edge of my bed, unable to move. I was afraid if I got out of bed, I would kill myself. I was in constant pain, constant exhaustion, constant depression, and constant confusion and had been for several years. I had fibromyalgia.

That day, I quit my job as the editor of a weekly newspaper my husband and I published. I was broken. And the chances of recovering didn't look good. I had been diagnosed with fibromyalgia in 1991, and the doctor assured me it was not progressive. I might not be able to resolve the pain in my back, but it wouldn't get worse, he said. It did. And it spread. And the fatigue and depression became debilitating. Some days, I couldn't get out of bed. Other days, I didn't want to. When I could get out of bed, I couldn't climb the seven steps from the front door to the kitchen without resting. With the confusion and memory loss, I couldn't follow a recipe. I couldn’t tolerate a 40-minute ride in the car for a movie or shopping, much less shop when I got there. My chiropractor, whom I saw several times a week, said he had to treat me as a geriatric patient. My medical doctor, while sympathetic, had only muscle relaxants and antidepressants to offer. I was 42.

Then in July 1997, I found information on the Internet about a doctor who prescribes guaifenesin to reverse fibromyalgia. I knew what guaifenesin was -- cough syrup! Sounded like quackery to me. And I was afraid, afraid of looking stupid for trying one more miracle cure, afraid of the pain that would get worse before it got better, as the doctor said this protocol was not for the timid. I couldn’t face hurting more. But I couldn’t face going through the rest of my life in pain, confused, exhausted. I kept running out of alternatives. This doctor, I rationalized, wasn't trying to sell me anything like most were. He didn’t sell the pills; he had no potions, no supplements, no subscriptions. He just put information out there and said he’d help me get well. Get well! Not better for a while. Not zoned out so I couldn't tell if I hurt or not. Well. That doctor was Dr. R. Paul St. Amand, and the on-line group was Guaigroup, on which I met Claudia Marek, his assistant. Ultimately, I decided I had nothing to lose. If the pain got to be too much, I would stop the treatment. If people laughed at me for trying one more crazy thing, well, let them. If it didn't work, I could cross it off the list. I had no life. What could it hurt?

I decided to give the protocol six months. If after that, I felt no different, I'd chuck the guaifenesin the same place as all the other “miracle cures” that hadn't worked. But I knew that I couldn't expect immediate results, so for six months, I would just believe it was working. I followed the protocol as if my life depended on it. I kept in touch with others following the protocol on the listserv and found a community of suffering and recovery that helped me through a fairly complex set of procedures. In six months, I was able to work part time on a very liberal schedule. In a year, I took a part-time occasional position. In 2000, that turned into a full-time position, and in 2005, I started my own business.

For eight years, I have had no fibromyalgia symptoms. No pain. No fatigue. No confusion. Well, OK, the normal amount of confusion that a 53-year-old grandmother feels with a full life, a wonderful husband and lots to do. I have my life back. Not without scars, but mended.

I take my guaifenesin every day. It’s not a cure; it is management. I will take it the rest of my life, just like a diabetic takes insulin. And for the rest of my life, I will let people know how to end their fibromyalgia suffering. I will tell them about Dr. St. Amand and Claudia Marek. They saved my life!

Jeri Hird Dutcher (aka jaelde wa-a-a-ay back)

Sherry Sharp

5 years on the guaifenesin treatment...5 years ago, I had overwhelming and very extreme fibromyalgia...going-out-of-my-mind with pain, extreme depression, tight, and very painful muscles, dizziness, nausea, severe eye problems,

extreme diarrhea, extreme fatigue, and a host of other symptoms.  I also had hypoglycemia. I went on Dr St. Amand’s

 liberal hypoglycemia diet in June 2003, then started the protocol the following month, reaching my cycling dose of 1200mg a day of guai in early Aug.

My first cycle was a doozie!  I hurt all the way down to my cells, bumps in the road that had been bearable before were suddenly unbearable, my emotions were crazy, I felt like I was going to die!  I kept at it (my family thought

I was crazy for staying with it!), soon had 3/4 of a good, amazing, great and fabulous day and have been hooked ever since.

I went through the craziness of guai changing formulations in late 2003; Mucinex producing too much pain, was on too low of a dose of FA, then finally started MDR guai in Apr of 06--and finally started again making the progress I'd had while on the prescription guai.  So it's hard to tell now how many years I've actually reversed.  I haven't blocked much, but with the guai problems we had back then, it took some time to figure out, so to be honest I have no idea where I am in the reversing process, and in all honesty don't care!

Now I have very few problems, if any at times, with fibro and my hypoglycemia is now healed for the most part.  Every so often when cycling, I'll have a few subtle symptoms of hypoglycemia but for the most part that seems to be healed.  (I don't recommend anyone trying to eat what they want just to make sure they still have it!!)  I'm still on some aspects of the diet tho' and am a lot more careful now about what I eat.  But cycling now is subtle, usually I'm not even aware of it 'till it passes and I realize I feel better.

I do have problems with my spine, and thus the muscles in my back, shoulders, ribs and hips.  I was put on disability in 2005 for damage and arthritis to my spine, so that holds me back a lot now.  But to even think of how my back would feel if the fibro weren't for the most part gone is unthinkable.  I'm not sure I could take it.

Before the fibro crash in Feb 2003 I was a very active person, albeit with back probs.  I was a full time nurse working unthinkable hours, a full time wife and mom, had grandchildren that I was very active with, and just did anything I wanted.  Drove to Kansas one year and camped out for 4 days (all girls--it was a challenge!), decorated my home, just everything I wanted and enjoyed I did.  The crash left me wanting to die, going to Dr's who just scratched their heads at me, and slowly losing my mind.  We lost our home, a few vehicles, my career and job, thankfully my marriage made it through it, but it's a miracle it did.  And now here I am 5 years later with my fibro symptoms mostly gone, tho' they will poke up at me when I cycle, and living a very different life than what I did before.  It was well worth it, I recommend this to anyone and everyone who asks, even people I don't really like!  ;-)

I should add, I quit smoking and am in the process of reiterating, a challenge when you don't have a lot of cycling symptoms, but in the end I may be back to 1200 a day where I was before.  I had a wreck a year ago Feb and am

just starting to feel normal again after it.  My back now hurts a lot more, so I just need to know is it my back or is it fibro, I'm beginning to think it's my back and that's that.

But I'm thankful that I don't  have to worry about fibromylagia anymore, I'm thankful for finding the protocol and the book (I was hooked after reading it), and I'm thankful for GuaiGroup and the people who have helped me get here.

Hang in there newbies, it is soooooo worth it.  You will get there!

Love to everyone,

Sherry in TX 45

Gloria Hutson

Five and a half years on guai…My bio is usually quite different then most people as no one had to convince me to try it.   From the moment I discovered Dr. St. Amand's website, I KNEW it was going to give me back my life…absolutely no doubts.   You see I had accidentally discovered guaifenesin, 3 months prior, when I was very ill with severe asthma inflammation and bronchitis.  I was taking quite a bit of liquid guaifenesin to keep my chest loosen so I could cough.   I couldn't figure out why I started to feel better in general and was suddenly able to walk without pain.   I was very, very ill with FMS.  One could say nearly completely bedridden unable to care for most of my personal needs.   I slept most of the 24 hours just trying to escape from the never ending pain.  My doctors refused to give me anything for the pain although from what I understand now, narcotics barely makes a dent in FMS pain.   Life had totally lost meaning to me.

Dr. St. Amand's website told me how to immediately start the protocol and I did after being 24 hours salicylate free.   I started clearing out phosphates within 2 hrs of starting on liquid guaifenesin at 600 mgs.  Three days later I had my first burst of energy.  I was able to go grocery shopping, help put the groceries away and made supper.   It was my first glimpse of what was to come.   Three months later I was easily able to work my 30 hrs a week at my office.  No more bringing work home struggling to get it done between long naps.   I was able to clean my house, cook, and shop.

Over the counter pain medication now worked to keep my pain levels to something I could easily manage even though I was clearing very fast.  Life became exciting again as each new week brought new accomplishments.  I was able to do things with my life that I thought had been lost to me forever.   Once again I enjoyed gardening, dancing, working on home improvements, and taking long car trips.   Life had meaning again.

Do YOU want your life back again?   If so one needs to come to terms with the fact that the guaifenesin protocol is NOT accepted by a large part of the medical establishment.   You will be doing this alone for the most part.  There are only a few local support groups that support the guaifenesin protocol.   There is a list serve you can join at www.fibrmyalgiatreatment.com where others share their experiences, get help and support.

Dr. St. Amand has said we are the pioneers.  Pioneers need to be courageous, firm in their resolve, not swayed by others comments to try yet another treatment that doesn't work to get at the root cause of our illness.   Family and friends may not support you as they will not understand how the protocol works.  So courage and stubbornness in the face of opposition is a must.   As you slowly get your life back, your resolve will strengthen and gradually you realize that FMS no longer controls your life.   

One has no need to fear starting the protocol.   You may feel tolerably worse once you begin clearing out phosphates but if you make sure you find the correct dose, it's a whole lot easier then having horrible flares all the time.   A clearing cycle will make you feel lousy and sometimes the pain gets a bit more then you can handle without pain medication but OTC pain meds will help with that.   As the energy gradually returns, you do tend to overspend it at first and then will get hit with what feels like a flare as expending energy will release too much phosphates into your bloodstream which has to be re-stored.

Yes, you will feel really bad then.  I certainly had to learn to spend my new energy carefully so I didn't end up in bed for two days wondering what hit me.   Now at 5 1/2 years on the protocol, I can go, go, go without a problem but my first year on guaifenesin, I did have to be sure to rest often and listen to my body.

My only fear now is running out of guaifenesin and my FMS returning.   I have never forgotten how bad I was before I started the guaifenesin protocol.   It terrifies me to think I might return to that condition again.  There isn't anyone I know personally on the protocol who would stop taking guaifenesin so you know it must work just like Dr. St. Amand says it does.

Giving up salicylates also is not as hard as one thinks.   One can find substitutes for the products we have to give up that in many cases are even better then what we were using before we started.   Dr. St. Amand's website has lists of products all safe for us to use.  It's a place to get started but you will find that our drugstores sell many other brands.  One just has to learn how to recognize a plant ingredient and then avoid it.  It becomes second nature after a few months.  Nevertheless one must never forget that salicylates are our enemy to getting well.   If you think you can compromise and use even just one product and still get well, you are wrong.  

So to sum up, do not be afraid of the protocol.   Instead be excited because it's the beginning of a new life for you.  This is not an overnight cure but it does return health to us and the joy of living again.   I wish for you that joy of a new life. 

Gloria Hutson  MN, age 62

Deb

11 years on guaifenesin... I had my 11th guai birthday yesterday! This protocol is so incredible. I wish I had known about it when I was younger. I would not be having the busy life I have today were it not for it and all the wonderful people in association. I have never felt so good or had so much energy. I do whatever I want, whenever I want. I no longer have to make plans with alternate plans for "bad" days as there are no bad days. I exercise on my elliptical trainer, treadmill and Total Gym regularly. I am HG, so I do follow the diet.

I still have my now 24-year-old quarter horse gelding and in the winter, do not ride much, but in the Spring, Summer and Fall months, I do ride a lot. He is a totally different horse these past 11 years because he now actually recognizes me when I drive up. Pre-guai, I think he was not always sure of the strange person trying to catch him as I saw him so infrequently.

Working the hours I work at a stressful job are not nearly as exhausting as they had been. I am able to keep up just fine with my demanding schedule. My house is still messy, but now it is because I am too busy rather than too exhausted to clean. My 'part-zeimer's' fibrofog is gone. I think so much more clearly and remember things so much better.

No more IBS, insomnia, or migraine headaches since my complete reversal as of 9/05 and a wonderful side effect of the guaifenesin is that I have not had a sinus infection for 10 years. I do have some osteoarthritis but it is manageable with acetaminophen or worse case scenario, Celebrex or the new  Flector topical patch.

Basically, the key to my success is, following the protocol to the letter. I am a habitual, almost compulsive label reader. I do not touch anything that has salicylates. I avoid mint and all its unfriendly cousins like the plague. This is now something I do automatically and I never actually think about it. My family knows the protocol and my daughters read the labels of anything they plan on giving me as gifts. They can recognize salicylates even if they are not on the protocol. (One of my daughters may have to start the protocol some day, but right now she is enjoying the many remissions she has.)

Deb Brandt

 Sharon

5 years on guaifenesin...When I started on the protocol I could barely walk. I had trouble using my arms because of the pain. I had migraines, brain fog, dizziness, fatigue, TMJ; terrible neck and shoulder pain, hip, knee, foot pain etc. I could not plan any outings. I stayed at home and did very little. When I did go out where walking was required, I had to use a wheelchair because of the pain and muscle loss.

I have just finished my fifth year taking guai. My life has changed drastically. I still get brain fog, dizziness and rotating pain. Sometimes the pain is quite strong and I use penetran to get along. My energy level is quite good most of the time.

Five years ago I could never have accomplished what I have done during the last month. My husband and I are on vacation in New Zealand for two months.  I was able to get through the 17 hour flight and was back to "normal" after two Days! I have been able to sightsee and golf. I have been on the go a lot. My only real error occurred when I decided I was "normal" and walked an awful lot one day and even walked up hill to view a waterfall. I suffered a lot of pain after that...but I was still able to do quite a bit. I curbed my walking for a day or two and the pain calmed down...it didn't last for weeks at a time like it used to.

Am I the same person I was five years ago? Not even close. What an incredible change--a wonderful miracle. If you are sitting on the fence or wondering if you will ever get better...just follow the protocol for the guaifenesin treatment exactly as demanded. Try and exercise--do whatever you can--be patient. There is no doubt that the protocol works...but it takes time. I still have 4 more years of clearing because of my age, but I am so happy after 5 years. It is hard work, but if you stay tough, you will see longer times of less pain over time. 

Wed, 30 Jan 2008

6 years on guaifensin...Well in two days I will start my seventh year on guai. The time has gone by quickly. I have tried to follow the protocol 100%.

There have been many positive changes in me over the last six years. I am no longer constipated like I had been since I was a small child. When I go to bed at night I don't get claustrophobic, feel like I can't breathe and lie in pain waiting for the morning to come.

In the morning I am no longer in a fog with no energy and pain. My mind is clearer, my view of life happier. I can handle stress much better. I can plan what I am going to do the next day and most of the time, accomplish it. I have a lot of energy and rarely need to nap during the daytime. I used to have headaches, migraines almost every day and now I rarely get a headache--.just when my neck is cycling hard.

I wasn't able to walk or stand and now I can go on the treadmill for 20 minutes at 3.5 and lift weights and play 18 holes of golf on a cart. My right knee still swells up when I do too much but it is manageable. I can plan big trips and accomplish them. Went to New Zealand last year for two months and was not afraid to go. I knew I could do it. Before I started guai, just going downstairs for breakfast was almost too difficult.

I haven't listed all the changes, but enough for you to see the huge changes in my life because I’m so much better. I am tremendously thankful for my new life and so is my family. My husband has been 100% supportive and that has been a great help to me.

If you have any doubts about the protocol you really shouldn't. You just have to be very patient, do what you are supposed to do and time will pass and you will get better. Don't be depressed if you thought that your arm had finally cycled for the last time and then the pain comes back again. This is a two steps forward one step back kind of thing--but eventually the phosphates will cycle out for good.

Sharon Pullam 

6 Months   1 Year  2 Years  3 Years    4 Years