Discussion in 'Fibromyalgia Main Forum' started by ELS029, Sep 16, 2002.

  1. ELS029

    ELS029 New Member

    Only just found this wonderful web site. Any advice to someone whose had CF/FM for
    about fourteen years and about to start on guaifenesin therapy. Good and bad stories welcome.
  2. ELS029

    ELS029 New Member

    Only just found this wonderful web site. Any advice to someone whose had CF/FM for
    about fourteen years and about to start on guaifenesin therapy. Good and bad stories welcome.
  3. Shirl

    Shirl New Member

    Hi welcome to the board. We have many members on the Guri treatment, they will be sharing with you their experiences shortly.

    Heres an article on Guaifenesin to get you started on your education on this treatment.

    There is much more information on the 'Home' page at the top left of this board, just click on Home, and enter in Guaifenesin, they will all come up for you.

    Again, welcome to the board.

    Shalom, Shirl

    Treating Fibromyalgia with Guaifenesin
    by R. Paul St. Amand, M.D.


    Paul St. Amand M.D., is a graduate of Tufts University School of Medicine. He has been on the teaching staff at the Los Angeles Harbor/UCLA Hospital, Department of Endocrinology for over forty-three years. He is currently an assistant clinical professor at the UCLA School of Medicine. Dr. St. Amand discovered guaifenesin’s use as a treatment for Fibromyalgia, and his work is cited wherever the substance is mentioned.

    Fibromyalgia—(once called “Fibrositis”) was first described in 1843 as a type of rheumatism “with painful hard places.” Today, Fibromyalgia is accepted as a distinct illness. Patients present with fatigue, insomnia, non-restorative sleep and generalized pain.

    Over thirty-seven years ago, a patient taking gout medication found he could easily break tartar off his teeth with his fingernail. Dental calculus is a calcium phosphate deposit in the form we recognize as “apatite.” It seemed probable a serum derived abnormality existed in saliva that allowed such deposition. Total body calcium and phosphate might attain excessive, critical levels. Cellular accumulation would interfere with energy formation and cause malfunction of susceptible systems. This would explain not only tenderness, palpable swelling and spasm but also the generalized complaints. We began using “gout drugs” for patients with the above symptoms and findings. We stress, uric acid and gout have no relationship to Fibromyalgia. To be effective, a medication must act on nearly the same area of the kidney that malfunctions in most cases of gout. Allopurinol, which blocks formation of uric acid does not affect renal excretion and is useless for Fibromyalgia. We feel an inherited defect permits some type of excessive, kidney retention that leads to an abnormality in the metabolism of phosphate and calcium.

    We now rarely use the two gout medications, probenecid (BenemidTM) and sulfinpyrazone (AnturaneTM) for Fibromyalgia. Another medication, guaifenesin, is normally prescribed to loosen mucus (mucolytic effect) in patients with chronic sinusitis, bronchitis and various lung diseases. It has proven the most effective drug for Fibromyalgia to date. Unlike the previous drugs, it only weakly increases excretion of uric acid and would be useless for gout. It has no listed side-effects though we have learned of nausea, heartburn, itching or rash in rare instances. We usually begin with one half tablet (300 mg.) twice a day for one week, an adequate dosage for twenty percent of individuals. If needed, we increase to 600 mg. (full tablet) twice daily according to changes we and patients note. For about 70 percent, one of these two dosages suffices. Obviously, 30 percent will need larger amounts. Adjustment is made as suggested by our subsequent mapping.

    Observations suggest a primary defect in phosphate, not calcium metabolism. Calcium with or without magnesium tablets taken with meals have allowed lower dosages of medication possibly because they bind phosphates from food, increase fecal excretion and thereby lessen absorption. Some patients have fingernail changes that suggest an abnormal calcium phosphate deposition at the root. Similar to concentric tree rings, they grow and eventually break or peel at the tip. Primarily phosphate, some calcium and oxalate, increased in the urine as we initiated treatment in the few patients we tested. Our hypothesis is that an inherited, abnormal renal retention of phosphate and secondarily, calcium, leads to an intracellular excess of both. Cells and their power stations, the mitochondria, malfunction and produce inadequate ATP, the currency of energy. An energy deprivation syndrome develops and affects susceptible, widespread, bodily functions. We realize this is simplistic and the chemistry far more involved.

    Treatment with guaifenesin requires more than a mere prescription. A detailed history is necessary to ascertain the duration of the illness and to permit prognostication regarding speed of reversal. Simple palpation finds most of the lesions. They should be recorded on body maps for location, hardness, shape, and size. Patients are asked to keep at least a mental note of their symptoms with attention to pain and emotional swings. Mappings are repeated as treatment progresses and are used to monitor affected regions for change and ultimate disappearance. Our mutual input readily identifies the dosage and discerns improvement. Guaifenesin can be taken at any age and has been in use for many years for its previous indications. Treatment reverses Fibromyalgia in less time than it took to develop. This accelerated process reproduces previous pain and emotional symptoms, sometimes intensely. Some time after proper, individual dosage has been attained “good days” appear and eventually cluster. Similar to a bouncing ball, symptoms gradually lessen, lesions soften, break-up and clear. Two months of adequate treatment reverses at least one year of accumulated disease. Thus, the longer the duration of illness, the longer to total clearing. Tissue damage from scarring or X-ray abnormalities are permanent and will not reverse. However, pain even in the same locations, may not be due to such changes.

    Aspirin completely blocks the benefit of all medications we have used, including guaifenesin. The greatest source of patient error comes from taking aspirin-related agents, salicylate or salicylic acid, which interfere with guaifenesin at the kidney level. Skin readily absorbs these compounds. Almost all plants manufacture salicylates, often in large quantities. Parts from leaves, roots and seeds concentrate salicylate in herbal medicines. Patients can neither take these nor use any skin creams that contain plant products. This includes products such as nasal sprays or suppositories. Our warnings do not apply to foods, cooking herbs and spices though they do harbor salicylates. The content is insufficient to block benefits if cumulative, extraneous sources are not added.

    This is deliberately repetitious because it is important. We cannot detect how easily or completely one's genetic make-up allows blocking. Assume you are very sensitive. Be meticulous in conducting your search of current or replacement products. Manufacturers make sudden changes and often list only “active” ingredients. If you must use the product contact the manufacturer to learn of “inactive” ones, which might include aloe, mentholatum etc.

    Many pain medications contain aspirin or have “salicylate” or “salicylic acid” as part of their contents. You cannot use these. Tylenol, Advil, Darvocet-N and anti-inflammatory drugs are acceptable. Heed the warning: all plants make salicylates. “Natural” refers to something made in nature. Poison ivy, oleander and hemlock are all natural but that does not make them safe. You must avoid products with that word including such things as aloe, ginseng, menthol, mentholatum, almond, grape seed oils etc. in creams, lotions and herbal medications. Castor oil and camphor have recently appeared in many lotions, lipsticks and underarm deodorants–they are high in salicylates.

    Ingredients with plant names butchers' broom, rosemary, geranium, St. John's Wort must be avoided. Oils made from plant parts must not be applied to the skin.

    Avoid Vitamin E derived from Rose Hips and vitamins from “natural” sources such as vitamin C with bioflavinoids, which may contain quercetin, a source of salicylates.

    Avoid all lip balms with the exception of plain Vaseline. Tubes of this product are available. All creams and lotions for muscle and rheumatic pains such as Ben Gay contain salicylates and cannot be used. All sunscreens or sunless tanning products with plant derivatives, including oxylsalicylate readily block. Cleansing lotions, astringents, exfoliants, lotions for oily skin and acne compounds, such as Stridex, often contain salicylates. It is best to avoid herbal shampoos and hair conditioners though they are not on the scalp long. Herbal hair sprays will land on the skin and deliver salicylates. Avoid shaving creams or soaps with menthol or aloe; microscopic cuts produced by razors with aloe-coated, white or colored strips provide direct access into the bloodstream.

    Use no herbal bubble baths. Wart and callus removal products almost all contain salicylates. Peptobismol is bismuth subsalicylate. Certain mouthwashes such as Listerine, contain salicylate as do toothpaste's with “gum care ingredients.” These offending substances will be absorbed and partially or totally block the effect of guaifenesin. No adverse reaction ensues but no benefit is attained. Be aware, a few pharmacies have made serious errors. Patients should obtain plain “guaifenesin,” not a tablet containing decongestants or anti-cough preparations.

    Our therapeutic approach is not for the weak of courage. As we warned above, reversal of the disease often produces many symptoms causing some patients to doubt their progress during the initial two to four months. It takes confidence and strength to get through this early phase. Cyclic appearance of good days and improvement on mapping provides the needed encouragement to go on. HW

  4. Jude

    Jude New Member

    Shirl gave you lots of useful information. I've been on the protocol for five months now and believe it is one of the efective tools in FMS treatment. I would advise getting a copy of the book since I refer back to mine all the time. Make sure you use prescription guaifenisen and not an over-the-counter 600 mg tablet. Some insurance companies don't want to pay for the prescription since a 600 mg tablet is available without a prescription. Some people are alergic to the green dye in humidibid. There is a white tablet available. I believe that I am making progress; it is slow but I am better than five months ago. The excreted phosphates in my urine look like baby powder on the water in the toilet bowel. They weren't there before I started using guaifenisen. It's easy to get impatient but I'm sticking it out. Any further questions: just post and someone will respond.

  5. LilSis

    LilSis New Member

    Hi, sorry I am just now getting back to you. Have had a rough month, health and work. Thanks so much for the info you gave me on your supplements. I am going to defintely start trying some (1 at a time).
    Hope you are feeling well. Thanks for all the genuine compassion that you share with the "peeps" on this board.
  6. Mikie

    Mikie Moderator

    Welcome to our board.

    I have been on the Guai treatment 16 months. It has made a tremendous difference in my tender points and muscle pain. I have had some wonderful Guai remissions where I almost felt "normal." I also have CFIDS and have been under a tremendous amount of stress, so my energy level has not been as good lately. I used to have to take Morphine for my pain, and the Guai has made it possible for me to get along without it.

    Anyone on the treatment should have the book and understand the theory, the protocol for adjusting doseage, and the need to eliminate all sals from supplements and personal-care items. It helps a lot if you have eliminated the sal products prior to starting the Guai treatment. The white tablet is called Guaifenex LA and comes in 600 mg. tablets. Taking a calcium tablet with meals helps eliminate phosphate debris through the intestines which eases the load on the kidneys and helps speed up the process.

    I now take 1800 mgs a day. I have started taking 1200 in the morning and 600 at night, instead of cutting one of the pills in half. I figure the kidneys don't work as much during the night. It has caused some flaring, so I figure it's working more effectively. When I first increased the dose to 1800 mgs., I could see the phosphate crystals in the bottom of the toilet bowl if I let the urine sit a bit. Now, it's like the baby powder which floats on top. I believe I am way more than halfway to achieving reversal. Now, If I could just get rid of the CFIDS.

    Good luck to you.

    Love, Mikie
  7. Mikie

    Mikie Moderator

    Yes, I have heard this. It has not caused me to become a "bleeder." In fact, I have read about the hypercoagulation caused by having mycoplasma infections and decided that the blood thinning properties of the Guai are a good thing. I even drink red wine to further thin my blood. On my Mother's side of the family, we have had a lot of deaths from blood clots blocking the arteries causing heart attacks.

    Love, Mikie
  8. Mikie

    Mikie Moderator

    Thanks again for your timely and extremely important info. Since I have been on the Doxy for a year, it is possible that a lot of the mycos have been killed off. In Jan. I am planning to try to cycle off them and see what happens. That is, if I am feeling well at the time. I never try to cycle off when I'm not in remission because I don't believe it tells me anything.

    I am getting a blood test this week and will ask the lab tech whether my blood seems to be thick to her. After all the blood they draw, they probably have a pretty good idea. I remember someone here saying the lab tech saying she had "gloppy" blood.

    Jelly, you have certainly been busy finding the latest info on mycoplasmas and I appreciate it. I really need to get off my butt and start reading up on them again. I've just had so much to attend to lately and am still dealing with a few legal matters and doctor bills, but I'm hoping things will get more back to normal so I can focus on getting well.

    I admire you for not giving up and for going to get retested. I'm glad because now you can treat your infection. Despite everything, my rheumy still doesn't believe in chronic mycoplasma infections. I just went into the website and found he has had action taken against him for taking kickbacks for referrals. He was fined and had his license revoked in NY due to the actions taken in FL. I always knew there was something about him which wasn't right. He writes my Klonopin, so I continue to see him.

    Love, Mikie