These are excerpts taken from my journal and my journal of emails to family and friends. Every single symptom I’ve experienced is not here…only the primary ones…  

6-30-00 - I went off of Mannetec since Dr Amand says it will block in his protocol.  I want to start the Guaifenesin treatment in a few weeks.

7-30-00 - It has taken me a good three weeks to browse the Guai websites and check all my make-up and other products and replace them with the sal-free products.  It has been so overwhelming.  My mind just seems to shut down and scream, "No more information, please!"  But I keep pressing on because I believe that this is the right thing for me to be doing at this time.  How can it not be when Dr Amand's book described me to a 'T'!  If he knows my problem so well, then his solution must work!  I'm starting tomorrow!  I’m sort of scared because I have no idea what to expect!  I’ve been ‘lurking’ on the websites and have read enough to know that this isn’t easy for most people, especially starting this at my age…

8-1-00 - I've been feeling nauseated today and I've had a terrible toxic headache, almost a migraine.

8-2-00 - Nauseated and some flu-like symptoms.  Terrible headache after supper. 

8-3-00 - My nausea is disappearing.  Headache not as severe.  Some achy all over. My glands under my arms are hurting.  Memory loss has started.  Couldn't remember my doctor's name at the pharmacy.  I just could NOT think.  When I left the store I could NOT remember where I had parked the car. I began to have a major anxiety attack.  Talked myself into calming down and just look for the car instead of trying to remember where it was. Nerves are worse.  Feeling VERY irritable.

8-4-00 - I woke up this morning and felt like a truck had run over me.  Not just once, but several times!!  I wasn't sleepy, but felt SO exhausted and drained.  My body ached all over.  My nausea is gone for the most part.  No headache today.  Flu-like symptoms worsen off and on throughout the day.  My brain feels like it's full of cotton.  The last few days I have felt extremely tired around 4:30 p.m.  My lymph glands are hurting all over, off and on during the day, (like they did in the early ‘90’s).  My memory lapses are a feeling of a completely blank brain with no data to help with common sense thinking.  Almost like a coma-like state for a few minutes.  When that happens, the anxiety attacks come.  I'm going to have to learn to accept that this is all part of the reversal process and quit freaking out!

8-5-00 - Today I'm feeling really good.  Went to Boerne and Gruene with Shelly to look for her wedding reception sites.  I wonder if my shampoo is blocking the Guai?

8-6-00 - Now I'm cycling again.  Last night I woke up off and on feeling nauseated and extremely achy all over.  Today I felt very tired.  Cross-eyed and sleepy after eating carbos (like I felt in the early 90's).

8-7-00 - Today I don't feel too tired, just not a whole lot of energy.  Feels like I'm pushing myself to get things done - like I'm pushing a wheelbarrow full of bricks up a steep hill.

8-8-00 – Well another truck ran over me….I’ve been SO fatigued today.  I’ve had several moments when I think, “I just have to go lay down for a few minutes!”  I’m so thankful my children are adults and don’t need me in the same way as when they were young.  My heart goes out to any mother on this protocol who has babies, toddlers and teen-agers!  What heroes they are to go through what I’m going through and continue ‘mommying’!  The pain in my lower back (waist-line) aches so badly.  The muscle on the right side that was injured in my car accident is swollen and rock hard.  When I lay down it feels like I’m lying on a tennis ball.  I’m trying to get by with Tylenol….

8-9-00- I slept well last night…no body aching.  I did have some insomnia around 4 a.m.  I don’t feel fatigued today but I do have a sick headache and a foul taste in my mouth.

8-10-00- Last night I was so chilled that I had to get my throw.  It’s August in Texas, for goodness sake…guess its part of cycling.  My headache is still plaguing me today.  More tired than yesterday.  I’m not as alert.  Nerves rawer.  I’m having sharp pains in my thyroid area off and on.  4 p.m. I went to bed because my headache was turning into a migraine.  

8-12-00- Wow! I slept well and woke up feeling rested!  That hasn’t happened in years!!  My upper back is aching.  My headache is gone.  Feel pretty good aside from feeling like I have a slight fever; some tired, some chills, achy.  Symptoms come and go.

8-13-00- Slept well again last night.  Feel rested and years younger!  Woke up with gunk in my eyes.  My right shoulder is hurting bad.  Just moments of achiness and fatigue today.

8-14-00-  Well, the gunk in my eyes should have warned me…started cycling again.  I didn’t sleep well.  Felt VERY restless after 5 a.m…couldn’t go back to sleep.  My right shoulder is aching so badly.  I can’t lift my rt. arm without sharp pain radiating down my back, under my arm and up into my neck.  I have a burning pain in the rt. side of my neck, rt. leg and ankle and on the outer part of my left thigh. 

8-15-00- Insomnia from 4:30-6:15 (at least that’s the last time I looked at the clock) My back and shoulder are aching worse than yesterday.  This afternoon I can lift my right arm without pain…achiness is gone.  Leg and ankle still have burning sensation.  Brownish urine today.

8-16-00- Wow!  Last night I was dreaming a lot!  I haven’t remembered or been aware of any dreaming in a LONG time!  Yesterday’s pain is very slight today.  Shoulder pain is completely gone.  My neck pain is now on the left side and up into my ear.  TERRIBLE headache again…kept getting worse.  It’s the same kind I used to get in Bolivia...in the back of my head.  Finally broke down and took Darvocet N.  I feel so tired today…in bed all afternoon.  Left leg still aching with burning pain.  I feel so tense…TMJ area feels tense…

08-17-00 - I ache SO badly ALL over.  Ibuprofen doesn't do anything.  Lying down doesn't help either.  I'm on the verge of crying because there hasn't been any let-up from the pain for 4 days now.  I can only hope there's a 'rest' soon.  I keep going because at this point pain means healing.  I can only hope...At least my headache has gradually disappeared.  I finally broke down and took a muscle relaxant that has helped the neck pain.  I forgot my Nortriptyline last night…is that why I’m in so much pain today? I’m feeling so depressed and so alone in my misery.  On a positive note, my skin is improving; softer and more pliable.  The alligator look was getting old…I’m so hopeful that the guai will improve my skin.  I’m having some pain in my thyroid area again.  Don’t know if it’s from TMJ problems since the pain from that can radiate all the way down to the chest and upper back…. Sure would be nice to have a doctor’s opinion on all of this instead of playing this guessing game!!!

8-18-00- woke up feeling rested.  Not as achy.  Most pain gone and just some tired. Today for the first time in 15 years I was able to make love and not feel like I had swam a mile afterwards.  It’s supposed to be a wonderful thing and it is but I pay a high price for the pleasure.  It leaves me incredibly weak and trembling for hours and my muscles ache for several days…my body still can’t handle the contraction of muscles because there is no energy.  This disease sure takes its toll on this area of a marriage.  I’m thankful God has given me an understanding husband!

8-19-00- I slept well..feel rested but I feel like I’m in somewhat of a fog. I’m still having real problems with constipation.  I’ve doubled my Psyllium husks (have learned since this year that the Psyllium should be taken at least 2 hours after the guai pill) My left neck muscle is still burning and painful without the muscle relaxant and the Ibuprofen.

8-20-00- Today I woke up alert and raring to go (like I used to.  I was always a morning person until FMS)  Neck pain still plaguing me…still taking the drugs for relief.

8-22-24- I’m wondering if I’m cycling?  I don’t feel too bad..achiness is gone.  I feel somewhat depressed and I’m having BAD fibro-fog.  I left half of my groceries on the check out counter.  Luckily I hadn’t paid for them.  How did I not notice that with all I had bought it would NOT have fit into just two bags that I walked out with…sigh.  I feel like such an idiot sometimes!  Very humbling!  In the after noon I had a doc. appointment and on my way I realized that I was headed to Randolph (where my husband works).  I realized my mistake and then had to pull over to the side of the road because I couldn’t for the life of me remember where the clinic was. In the evening I hit the garage door opener not realizing the door was propped open for ventilation.  It was trying real hard to open!  I even looked at the door and wondered why Gary hadn’t propped it open!  Dr. St. Amand is so right when he says we can look at something and we literally don’t see it.  I guess we see it but our brain doesn’t register what we’re seeing…so scary!   I then warmed up my cup of water in the microwave with no water in it.  I just want to crawl into a hole and die.  How can I go on living with this terrible brain-fog?  It’s so frightening!

8-26-00- Today I went to 600mg twice a day.  I just felt like nothing was happening.  My fibro-fog is a lot better. (I know now that I should have waited and been patient instead of upping the dosage.  Fibro-fog is part of cycling.  For some reason I thought I needed to be aching bad to be cycling….)

8-29-00- This morning my muscles in left leg (mostly upper thigh and behind rt. knee are spasmming (I wonder if that’ a word?) really bad…had to get up, it was aching so badly.  My leg feels weak and paralyzed.  Like it’s too heavy to lift or move…The bottoms of my feet are burning and I have patches of numbness. 

8-30,31- First day I woke up feeling rested and ran several errands.  Legs ached really badly and I felt pretty exhausted by evening.  Urine is brownish again.  Next day I woke up feeling quite tired.  Over all achiness.  Fibro-fog bad.  Left the front door unlocked…

9-7-00- I’m feeling pretty good.  I got a lot done today!  I’m having some sharp, flash pain in my rt. hand.  I feel sort of depressed.  Don’t know why because I feel better…just a feeling that comes over me.  I’m definitely seeing improvement in my bowels.

9-8-00- I’m realizing that depression and fibro-fog precede the start of a new cycle.  My rt arm is aching down into my fingers.  It felt paralyzed with the same sharp, flash pain.  My upper thigh is hurting up into my groin.  Aching pain in my groin has been one of my worst FMS symptoms.  I’ve never known if it’s my lymph glands or muscles…

9-9-00- My rt. hip is aching..like down to the bone.  Only thing that helps is laying on a heating pad…drugs aren’t helping the pain. My head hurts so bad that is hurts to lie on the back of my head.  Took Darvocet and a muscle relaxant.

9-11-00- Woke up tired.  I feel very depressed today.  I’m beginning to see a pattern; bad headaches…drugs…fatigue… depression.  What a miracle it will be if this treatment gets rid of my headaches!  That will be enough relief for me to advocate this treatment!

09- 21-00 - felt so much better the past few days.  More energy than I've had since I can't remember.

11-10-00 - I can definitely see my cycles come and go now.  I have about a week of pain 2-4 days of intense pain and then gradually no pain for about 3 days.  On those 'no pain' days, I'm so tired from cycling that my emails pile up while I try catching up on my housework, errands, etc.....When I'm in a lot of pain it takes so much courage to go take that little white pill that will bring it on even more.  But I continue to hope that all this pain is leading to eventual healing of my body.  Usually towards the end of the pain cycle, I'll have muscle spasms in the areas where the pain has been.  I told Gary that it feels like my cells are having a party because they got rid of some of the debris....:)

This week the guaifenesin is working on the right side of my body in a couple of major areas.  This causes a deep aching that seems to go all the way to the bone.  This time the pain is mainly in my right arm, my right thigh and into the leg.  After a day of severe aching, my limbs will feel weak and almost paralyzed.  My pain pills don't seem to touch this pain.  But thankfully, the heating pad relieves it enough that it is tolerable.  I have about another day and then it should be letting up. :)

"My all-wise, all- knowing God reigns in realms beyond my comprehension to bring about a plan beyond my ability to alter, hinder or stop"

12-29-00- Christmas was a chore again.  I so hope for the day when it will be something to look forward to.  Now I just think of all the work and groan because I have no energy…It has really tired me out like it has for the past 15 years….

01-11-01 - ...the last four months have been difficult for me. I’ve been so lax in answering emails.  The pain in my arms keeps me off the computer many days.  Or, I'm feeling better and take the opportunity to catch up on everything before the next "pain cycle" hits.  It took me three months to figure out what dose I should be on.  I'm pretty sure that this last raise is the right one (I was wrong). I do see improvement, small though it may be.

I've been encouraged listening to Alistair Begg on the radio with Truth for Life.  He's been doing a series on Joseph that has refreshed my perspective.  This is a poem he quoted that aptly describes how I feel:

"My life is but a weaving between the Lord and me.  I cannot choose the colors.

He worketh steadily.  Oft times He weaveth sore.

And I in foolish pride forget He sees the upper and I the underside.

Not 'till the loom is silent and the shuttles cease to fly, shall God unroll the canvas and explain why the dark threads are as needful in the weaver's skillful hand as the threads of gold and silver in the pattern He has planned".

I've been doing better the last two days.  I upped my dose the first of the month and have quite a bit of achiness.  I seem to have gotten rid of the horrible headaches I was having.... haven't had any this month :)  I think I'm on my right dose now.  I've seen remarkable improvement in my muscle lumps...)

The hardest thing about this treatment is the very slow reversal process.  For those of us who are used to digging in and getting things accomplished one way or another, we have little patience for those phosphates to SLOWLY make their way out of our bodies.

5-09-01 - Debbie, (a friend I was encouraging to try the protocol), I found out about this treatment I'm on last June.  It took me 6 weeks to research it and eliminate all the salicylates that I was using in my make-up, lotions, shampoos, etc.  I actually started the treatment the first part of August.  It took me until this last March to find my right dose; at least I think I have. :)  Finding your genetic dose is probably the trickiest thing about this treatment.

I don't have a doctor here that uses this treatment.  I was able to talk my doctor into letting me give it a try since there are no side effects.  She has been real good about upping the dose when I tell her that's what I need, but she hasn't really shown any interest.  It has taken MANY hours on the internet to research and try and find answers through the archives and the web sites that have the support groups for this treatment and information that is so helpful.  When I get truly stumped, I email Dr. St. Amand and Claudia and they are real good about responding much quicker than I ever expected.  We sent for a video and Gary is learning how to map me, the most important element in this treatment, besides keeping a journal of symptoms.  It’s important to keep track of changes: whether you’re clearing or blocking the guaifenesin with salicylates.

5-15-01 -  Debbie, your illness sounds like the typical deterioration of those of us who have fibromyalgia with the ups and downs.  But then slowly there are more downs than ups and pretty soon no ups.  That's where I was in 1988 through about 1994 when I was finally beginning to experience more ups again.  But then in 1995, I had that head-on collision that slowly, over the course of that year, put me back quite a bit.  My problems then became more serious because the thyroid disorder and the painful, swollen muscles were serious physical problems that were scary.  Up to that point, it was horrible depression and horrible fatigue with many other problems that never showed up on any tests.  So it was something I just had to live with....

Of course, menopause in '95 didn't help matters any :(  When I had that accident, I cried and was angry and called on God many time saying," Why?"  Several months before that accident, I was feeling the best I had felt in 10 years.  I just couldn't understand why God allowed that to happen.  I eventually submitted to his sovereign will in my life and learned to accept the life that I now had that was full of pain and a scary thyroid problem.

A year ago, I fell before God and said, "I know I have said this before, but I just can't take this life anymore.  It affects my whole family.  Please take me home.  If you aren't going to take me home, please give me relief from this illness."  It was the following Saturday that I found Dr. St. Amand's book in the library.  Possibly, without the accident, I wouldn't have worsened enough to keep looking for answers....only God knows!

I now know that I have always had fibromyalgia.  My health was never the same after I had the Hong Kong flu in '68 and after I had my appendectomy in '76, I began to experience the flare-ups.  At that time, they were months apart and then years apart until I had mono in '85 and the cycles were continuous until some relief in '94.

5-18-01 - Hey Debbie, I've been in bed the last two days, so I can't be on the computer for too long.  I completely understand the hesitation, confusion, fear to hope, maybe even some skepticism and reluctance to start this treatment.  That's why I haven't said anything about this treatment 'till now.  I wanted to be sure that it was going to work.  It's working for me and I'm hoping it will for you too!

6-11-01- Debbie, yes, I had a lot of fear and perhaps even some cynicism before I started this treatment.  Reading through the testimonies on the homepage helped me a lot before I started.  I realized some people have a fairly easy reversal and others a very difficult one.  Maybe you haven't reached bottom yet to want to try something new.  I had and was willing to take the risk of yet another 'new' treatment for Fibromyalgia.  I decided I was going to try it for three months and see what it was like.  Then I thought a year, now I'm going to stick with it until I'm 'normal' again.  Ask God for the courage and self-discipline you will need to do this.  He will give it to you like He did for me! :)

7-23-01- Hey Debbie, I know exactly what you mean about your brain.  That is probably the biggest thing beside the pain that I have experienced when a cycle starts, is my brain is shorting out!!!!  Gary worries that I'm going to burn the house down or leave the house unlocked, etc....our poor husbands...)

I was on a 300 twice a day for over a month before I upped the dose.  I was having flu-like symptom, bad headaches, severe pain in certain muscles, terrible fibro-fog :), terrible fatigue.  The worst of it started after about two weeks on the initial dose (just looked in my journal).  My thigh hadn't cleared, to my knowledge, in that month so I upped the dose.

This treatment is so hard because it is different for every individual.  I guess it really proves that we are each a unique individual...each a special poem that God created as God says in Ephesians 2:10..."workmanship" really means poem.  Part of me wishes we were all the same and had the same symptoms, reactions, cycles, etc.  But then I'm glad that God created me special and that my body is different from anyone else and that God, the Great Physician, will by His Holy Spirit guide me in what to do and what not to do in this treatment for my body that He created.  I've pursued getting all the knowledge I can and then I've had to trust the Lord that He will guide me in what I should do.  Can't say it's as easy as it sounds.  There have been days of despair, tears, and hopelessness....but it continues to draw me into a more intimate relationship with God because I can’t do this without Him!  I’m convinced that Dr. St. Amand is on the right track and that keeps me going :)

Be patient and if your symptoms are almost more than you can handle don't wonder if you should be stronger and be on a higher dose so you can get well faster.  Take it slow!!!  That is my advice.  I did and I don't regret that it took me 10 months to find my dose and I'm still wondering a little if it is for sure the right dose....:)  As long as my FMS symptoms are worse and I've been able to figure out that it is the guai that is causing the worsening, I don't sweat it too much about my dose because I've seen that during that time the guai  IS working and SLOWLY healing.

The hardest thing about this treatment is the very slow reversal process.  Well, for most of us it is.  For those of us who are used to digging in and getting things accomplished one way or another, we have little patience for those phosphates to SLOWLY make their way out of our bodies.  :)

8-07-01 - Hey Debbie, I've been down since last Friday....had a real bad three days (very painful), but I am now coming out of it with just slight pain.  My pain this time was mostly in my lower back (waist-line) and my right hip going around to the side and then down the outer part of my right thigh.  I've learned that when I have these real bad days (they usually only last 3-4 days), that it's just best to go to bed (I read a lot) and only get up every so often to do the very necessary chores like wash clothes, meals, etc....

I was cycling last week and then I accidentally used Cherylyn's hand cream....I blocked for a couple of days ....then had a few days where I could see I was purging (brown urine and bubbles), but can't really see a cycle...Oh well, I'll just lay around and wait and see what happens...:)  I've learned that this treatment sure will teach you patience even if you think you've already learned it!!!

I’ve been on this treatment for one year now! Yahoo!!  I made it through one year of hell!!  My first year on this protocol has probably impressed my family as my brave efforts display near unbelievable optimism.  I know they want to be optimistic but I have been disabled for so long now that they probably hesitate to hope that maybe I really have found the answer!  I’m convinced!  My daily headaches are quite seldom now.  I do have days when I feel more energetic than I have in years.  I know that I still have a long road ahead of me, but I now can see the light at the end of the tunnel!

My Protocol Diary

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