New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
This is what you allhave been waiting for
4 Replies
gohan2801 - October 2

I know to all of you myself included we all feel like there is no hope, i have tried so many thing and nothing seems to work. I have read up on many meds, articles, treatments, and feel like there is nothing worth trying.....until this.

For those who dont know my story here i go, i have been suffering with this for 5 years, recently diagnosed 6 months ago with fybromyalgia, osteoarthritis, and chronic fatigue syndrome. I also have Urinary incontinence and irritable bowel syndrome cause by fybro.

I recently came across this article about a RN who suffers from this same condition and went on a protocol after years of suffering and now lives a life of pain free. Yes i know not possible right? I myself am still not sure this is going to work but for these kinds of results i am willing to give it a shot.
This is called The Guaifenesin Protocol and info can be found here
fibromyalgiatreatmen
t.com/GuaiProtocol.htm
An
d
another link from the RN that was cured i guess you can say lol if there is such a thing, you can go here
fibromyalgiahawaii.com (Lucky im in hawaii)
So now i go to my doctor on monday and will propose this to him. Dont worry guys i will be the guinny pig!!! I will let you all know what happens.
Let me know if anyone has heard of this.

 

gohan2801 - October 2

sorry cure was the wrong word more like a working treatment, but still whatever you call it, it still spells HOPE!!

 

Fantod - October 2

Yes - I have heard of it. You can Google to find out more information about Guaifenesin and Fibromyalgia. I'm not a big fan of this theory but I wish you well with your experiment. Take care.

 

Fantod - October 2

Sorry to rain on your parade:

At the 1996 Orlando American College of Rheumatology meeting, Robert Bennett, M.D., presented the results of his one-year placebo-controlled trial of guaifenesin, a common ingredient in cough syrups. The Oregon Health and Science University professor from Portland posed the following question at the opening of his speech: "Why on earth would someone choose to study an expectorant for the treatment of fibromyalgia?" Bennett says: "The answer lies in the realm of popular demand."

For years, guaifenesin has been promoted as a cure for fibromyalgia. The theory behind the use of this drug is to rid the muscles, tendons, joints, brain, intestines and other tissues of harmful calcium phosphate deposits. These deposits, similar to tartar buildup on teeth, were speculated to be caused by an inherited defect in kidney function that would ordinarily flush the phosphate molecules into the urine where they belonged. Instead, these deposits were believed to cause serious impediment of blood flow to these tissues, resulting in an impairment of vital cellular functions throughout the body. Naturally, if this were truly the case, it could explain the widespread pain and bodywide dysfunction that fibromyalgia patients have.

Drugs that can draw the phosphate deposits out of the body should be able to correct this inherited defect. It has been claimed that guaifenesin works on the kidneys to mildly increase the excretion of uric acid and possibly to increase phosphate excretion. Thus, it was hypothesized that drugs which increased uric acid secretion (uricosuric agents) could also increase phosphate secretion and vice versa. Given the above hypothesis and the reported actions of guaifenesin, everything seems to fit into place.

So if you are a longtime reader of the Fibromyalgia Network Journal, you must be wondering why we haven't ever mentioned guaifenesin. Numerous and extensive muscle studies, including those by seasoned researcher Muhammad Yunus, M.D., of University of Illinois College of Medicine, have never revealed or even hinted that calcium phosphate deposits were a problem in fibromyalgia. Elaborate muscle metabolic studies such as the 1993 one by Boston University researcher Robert Simms, M.D., turned up nothing, not even with the use of modern NMR spectroscopy. Intuitively, if large crystalline deposits were present throughout the muscles in patients with fibromyalgia, you would think that they would show up in at least one study involving the muscles, wouldn't you?

But as Dr. Bennett explained, the study of guaifenesin for the treatment of fibromyalgia had to do with the patient demand for this drug and the frequent claims on the Internet and elsewhere that it was a cure for fibromyalgia. The proponents of this "cure" often claimed guaifenesin wasn't for whimps! Yes, as this drug was drawing the calcium phosphate deposits out of your tissues and into your bloodstream, you would have to go through symptom flare-ups. In the long run, after cycling in and out of severe pain, guaifenesin would rid your body of the damaging effects of these deposits. As long as you stayed on a maintenance dose of this drug, you would live out the rest of your life pain free. What an enticement, especially for those patients who are already up to their eyeballs in pain!

The likelihood that guaifenesin was a cure for fibromyalgia was slim, but for the benefit of patients who were dumping conventional therapies to try it, guaifenesin needed to be tested. Dr. Bennett agreed to take on the arduous task of a one-year double-blind, placebo-controlled study to get to the truth about guaifenesin. Twenty female fibromyalgia patients were placed on 600 mgs of guaifenesin twice a day and another 20 patients took a placebo (sugar pill) twice daily. None of the patients knew what they were taking, but all were given the same instructions to not take salicylates (like aspirin) because they interfere with the functioning of guaifenesin. In addition, the evaluation nurses did not know what the patients were taking either, i.e., it was a "double-blinded study." The study lasted for one year.

Bennett evaluated all study participants every three months for symptoms, tender points and serum/urinary levels of uric acid and phosphates. None of these variables significantly changed over the year and the response to guaifenesin was the same as that for the placebo. Now, what about the claims on the Internet and elsewhere that this study was fatally flawed because patients might have used cosmetics and other topical products that contain salicylates? Dr. Bennett provided six scientifically based reasons to toss out this claim:

1.Both the serum and urinary levels of uric acid and phosphate were all in the normal range and no change was noted over time.
2.If some patients were taking small amounts of salicylates by whatever method, there should have been a significantly reduced urinary excretion and elevated serum level of uric acid, but this was not observed.
3.Dermatology consultants to Dr. Bennett have explained that patients would have to plaster their face with makeup several times a day to absorb enough salicylates to affect their urinary excretion of uric acid.
4.Only in the last year have the proponents of guaifenesin therapy learned that cosmetics sometimes contain salicylates, yet they have been stating for years that this drug is a cure for fibromyalgia (without ever controlling for cosmetic use).
5.The claimed "cycling of symptoms" was not observed in this study.
6.Lastly, guaifenesin was not found to increase uric acid or phosphate excretions. Thus the postulated action of guaifenesin—the reason cited for its effectiveness—could not be demonstrated.
"I think my major comment is that the system works," exclaims Bennett. "We have shown the placebo is just as effective as the placebo!"

 

gohan2801 - October 2

I have already come across this but i also saw this and the fybrohawaii site that has had a profound positive result with this almost 2000 people have shown major pain loss with half being pain free, with results in 22 states and 6 countries. So if you want to find something that can contradict this, then you will. I am no doctor and i am not posting this because i am i expert because im not. But i feel that people have a right to know, and like i said i will be the test patient not like it has not already been tested in hawaii with positive results already. Just go to fibromyalgiahawaii.com/ and see for yourself. I believe this works and i am willing to try this. I know not everyone will want to but the choice is there and i for one am sick of being sick, in my book this is worth the chance the worst that can happen is that it will do nothing and what harm will that do nothing.

Fibromyalgia is a legitimate, common entity. It is a cyclic and progressive disease which affects millions of patients, primarily women, regardless of race. Manifested by multiple symptoms that may initially last only a few days, it eventually progresses to affect multiple areas and bodily systems until patients simply cycle from bad to worse. At present, there are no diagnostic laboratory tests for fibromyalgia. Our recent research paper reported several abnormal cytokines that change during the course of our treatment.1

Patients are often referred from one doctor to another, and told that they have chronic fatigue, systemic candidiasis, myofascial pain, irritable bowel or vulvar pain syndrome. Too often, physician and patient focus on symptoms and fail to perceive the much larger problem. These dead-end diagnoses result in the treatment of symptoms which is only partially effective and at the same time ignores the underlying cause and the disease that continues to worsen over time.

The American College of Rheumatology recommends searching for tender points at eighteen predetermined sites on the body to establish a diagnosis of fibromyalgia. However some patients simply have higher pain thresholds so while they complain of body aches or stiffness, they focus mainly on fatigue and cognitive impairments. These so-called Chronic Fatigue Syndrome patients suffer from the same metabolic abnormality. Since pain perception varies greatly, we urge physicians to seek objective evidence instead of the purely subjective response to variably tender points. The confirmation of fibromyalgia is far more secure when using our method of palpation that we call mapping (see below).

Fibromyalgia has no set symptoms and many combinations from the following list are interwoven:

Central Nervous System: Fatigue, irritability, nervousness, depression, apathy, listlessness, impaired memory and concentration, anxieties and suicidal thoughts. Insomnia and frequent awakening due to pain result in non restorative sleep.
Musculoskeletal: Pain and generalized morning stiffness could arise from muscles, tendons, ligaments and fascia of the shoulders, neck, entire back, hips, thighs, knees, ankles, feet, inner and outer elbows, wrists, fingers, and chest. Injured or old operative sites are commonly affected. Though fibromyalgia is described as a “non-articular” disease many know better: Joint pains with or without swelling, redness and heat are frequent. The litany includes foot or calf cramps, numbness and tingling of the face or extremities.
Irritable Bowel: (Often called leaky gut, spastic colon or mucous colitis). Symptoms include nausea (often brief, repetitive waves), indigestion, gas, bloating, pain, cramps, constipation alternating with diarrhea and sometimes mucous stools.
Genitourinary: Common are pungent urine, frequent urination, bladder spasms, burning urination (dysuria) with or without repeated bladder infections and interstitial cystitis. Vulvodynia (vulvar pain syndrome) includes vaginal spasms, irritation of the vaginal lips (vulvitis) or opening (vestibulitis) and painful intercourse (dyspareunia). It typically mimics a yeast infection but without the cottage-cheese discharge. Intense PMS and uterine cramping are common. Symptoms of fibromyalgia are worse premenstrual.
Dermatological: Various rashes may appear with or without itching: Hives, red blotches, itchy bumps or blisters, eczema, seborrheic or neurodermatitis, and rosacea. Nails are often brittle and of poor quality and hair falls out prematurely. Strange sensations are common such as cold, heat (especially palms, soles and thighs), crawling, electric vibrations, prickling, super-sensitivity to touch, and flushing that is sometimes accompanied by sweating.
Head, Eye, Ear, Nose, and Throat: Headaches (migraines), dizziness, vertigo (spinning) or imbalance; dry eyes as well as itching and burning with or without sticky or crusty discharge upon awakening; blurred vision; nasal congestion and post-nasal drip; painful, burning tongue, mouth and abnormal tastes (scalded, bad or metallic); ringing in the ears (tinnitus) or lower-pitched sounds; ear and eyeball pain; sensitivity to light, sounds and odors.
Miscellaneous Symptoms: Weight gain; low grade fever; lowered immunity to infections; morning eyelid and hand swelling from fluid retention that gravitates to the lower extremities by evening where it stretches tissues causing the restless leg syndrome.
Hypoglycemia Syndrome: This is a separate entity. Thirty percent of female and twenty percent of male fibromyalgics suffer both conditions (fibroglycemia). Symptoms greatly overlap those of fibromyalgia, but sugar craving accompanied by tremors, sweating, anxiety, panic attacks, heart pounding, faintness, and frontal headaches, especially if hunger induced, are solid clues to the diagnosis. Hypoglycemics must follow a prescribed diet or recovery will not be complete even with the reversal of fibromyalgia. (See Hypoglycemia for more information.)

Trauma, infection or stress can aggravate or tip susceptible individuals into fibromyalgia but are not the basic causes. It is generally accepted now as an inherited disease and preliminary results from our research team at City of Hope support this belief. We have treated family members that spanned three generations including four two-year-olds as well as patients who became symptomatic only in their seventies. This age spread strongly suggests a multi-genetic disease in various combinations. Boys and girls suffer equally before puberty but females predominate (85% to 15%) thereafter. Forty percent of our patients recall "growing pains" in childhood that disappeared during the true growth spurt of puberty. Untreated fibromyalgia ultimately leads to a "tartar of joints" that we recognize as osteoarthritis.

Over forty years ago, one of my patients taking gout medication observed he could peel tartar (calcium phosphate) off his teeth with his fingernail. This observation indirectly led me to study an unrecognized systemic problem reflected by deposits from the disturbed saliva. We now postulate that a defective metabolism, possibly a kidney enzyme, forces a minuscule retention of phosphate, which gradually accumulates to detrimental levels in many tissues. The excess results in inadequate energy formation (ATP), cellular fatigue and other malfunctions that explain all the symptoms of fibromyalgia. Our paper for interested professionals defends that theory.

We no longer prescribe gout drugs (uricosurics). We now use guaifenesin for fibromyalgia because it has no side effects and is even safe for children. It is marketed for respiratory mucus problems and is available without prescription in various strengths, though some brands may not be effective for fibromyalgia. Currently, we can only advocate three products: the long-acting 600 mg Mucinex also sold by Pro Health under their label, and a 600 mg. tablet compounded by Marina del Rey Pharmacy. Capsules and 400 mg. tablets may be added to boost the basic dose as short acting compounds.

We begin patients with 300 milligrams of long acting guaifenesin twice a day for one week. Feeling distinctly worse suggests adequate dosage and patients remain on that amount. This suffices for only 20 percent of patients; if symptoms do not worsen, we increase to 600 mg. twice daily. Reversal begins for 80 percent of patients at one of these two levels leaving 20 percent who will need more.


During reversal, symptoms are intensified and new ones may be experienced. These are not side effects, but signal that reversal is underway. Better hours eventually appear and then cluster into days and finally weeks. The palpable lumps and bumps soften, fragment and gradually clear. Recovery is more rapid than the time it took to develop the illness. Even genetically-slower responders, may clear one year of metabolic debris every few months. Newer lesions clear first and the oldest ones last.

The original description of fibromyalgia as “rheumatism with hard and tender places” has certainly been forgotten. Tender-point examination limited to a few preordained parts of the body has less value than our totally objective body mapping. We use our finger pads as though we were trying to iron out underlying tissue and thereby find the swollen places within muscles, tendons and ligaments. We record their location, size and degree of hardness on a body caricature that becomes a baseline for future comparisons. Unless swollen, the purely subjective tender spots are excluded in mapping. Subsequent examinations and patient inputs readily determine drug dosages and sequential disease regression. We hide previous maps until we complete the examination and only then compare them to confirm progress. The most important site for confirming the diagnosis and assuring future success is the left thigh. The outside of the quadriceps muscle (Vastus lateralis) and the front part (Rectus femoris) are involved in 100% of adults and clear within the first month upon attaining adequate dosages.

Ignoring the following will guarantee treatment failure. All salicylates including aspirin completely block the benefits of guaifenesin for fibromyalgia. This occurs at a kidney site—something well documented with uricosuric gout medications. Salicylates are often found in pain medications and exfoliating products. Less appreciated is the fact that all plants manufacture them in quantities that vary with genus and from crop to crop. They are stored in bark, leaves, roots, and seeds where they serve to repair damage or as weapons against soil bacteria and fungi. Salicylates are readily absorbed through the skin and intestine when introduced from medications and supplements including plants oils, gels and extracts. Individual genetics determine ease of blocking but all patients should assume a high level of susceptibility and take no risks. New or replacement products should be carefully inspected for changes made by manufacturers. Items on Salicylate-free lists should be double checked for accuracy before purchasing.

The following is a partial guide to natural and synthetic salicylates that must be avoided:

Medications: (1) Pain products containing salicylate or salicylic acid, for example, aspirin, Salflex, Anacin, Excedrin, Disalcid. (2) Herbal medications such as St. John’s Wort, gingko biloba, saw palmetto, Echinacea; vitamin supplements with alfalfa, rose hips or bioflavonoids (quercetin, hesperiden, rutin). (3) Wart or callus removers, acne products and dandruff shampoos may contain salicylic acid. (4) Pain creams, balms and lotions such as Ben Gay, Myoflex or Salonpas. (6) Medications such as Pepto Bismol, Asacol, Alka Seltzer or Urised that contain the word salicylate as part of their generic names.
Cosmetic and Topical Products: (1) Skin cleansers or exfoliants that use salicylic acid. (2) Hair shampoos, conditioners or sprays with plant extracts or salicylic acid (3) Bubble baths and lotions containing aloe, ginseng, lavender; almond or grape seed oils etc. (5) Sun screens or tanning lotions with aloe, octisalate, homosalate, mexoryl or meradimate. (6) Lipsticks, balms, or medicated topicals with ingredients such as aloe, camphor, menthol, or castor oil. (7) Deodorants with castor oil. (8) Sticky plant juices or saps adhere to the skin while gardening or weeding (Patients should wear waterproof gloves when gardening). (8) Beware of tissues, toilet paper and baby wipes with aloe.
Shaving Aids: (1) Shaving creams with aloe, mint, menthol or mentholatum will block. (2) Razors with aloe strips adjacent to the cutting edge deliver salicylates through microscopic cuts. Vitamin E, lanolin, and mineral oil are all acceptable.
Oral Agents: (1) Most mouth washes contain mint, wintergreen or salicylate (Listerine). (2) Toothpastes contain salicylates, as well as fresh or artificial mint, often unlisted. Use Cleure toothpastes, the non-mint ones made by Tom’s of Maine or others listed on our website. Baking soda and/or peroxide provide good cleansing and whitening. The non-mint pre-brushing rinses are acceptable as are Cleure Mouthwashes. (3) Use no lozenges, dental floss, breath fresheners or chewing gums with any mint flavor, including menthol, wintergreen, peppermint or spearmint. (Fruit/Cinnamon flavors may mask mint hidden by the stronger flavors.).

PHYSICIANS CANNOT BE EXPECTED TO RECOGNIZE OR KNOW ALL THE INGREDIENTS IN TOPICAL PREPARATIONS. DOCTORS WILL ASSUME GUAIFENESIN HAS FAILED IF PATIENTS DO NOT COMPLETELY PURGE SALICYLATES. IT IS YOUR RESPONSIBILITY TO FOLLOW OUR PROTOCOL EXACTLY.

Dictionaries or online references can help identify ingredients. When calling manufactures ask for a list to check yourself because often personnel do not realize that plants make salicylates. This web site can connect you to a support group to help with updated safe-product listings and answer questions. FAQs and lists are at:

No diet is required for fibromyalgia since the liver alters food salicylates.

Do not use decongestants or cough medicines to get guaifenesin. There are potential side effects from various additives. Single ingredient guaifenesin has no side effects (save rarely mild, but transient nausea) and no known drug interactions. Using it with salicylates causes no ill-effects, it simply negates the drug’s effectiveness for fibromyalgia.

Pain medications such as acetaminophen (Tylenol), Ultram, Darvocet-N, Imitrex, non-steroidal drugs such as Advil, and Aleve, will not block guaifenesin.


Our treatment is not for those lacking courage. It calls for patient skills and, hopefully, physician assistance. Remember, reversal of the disease reproduces past symptoms and may cause new or long-forgotten ones to re-surface. The intensity of these early cycles often causes concern during the initial weeks of treatment. Such symptoms are not guaifenesin side effects. Patients realize they were getting steadily worse long before starting our protocol despite medicinal Band-Aids used to mask symptoms. We offer hope to those with determination to try once more despite previous failures. This is a highly-effective protocol.

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question