I Have Fibromyalgia/ Chronic Fatigue Syndrome, but it Doesn't Have Me!
Fibromyalgia Treatment Center (FTC on Facebook)
September 11 at 7:18 PM ·
Message from Dr. St Amand, 9/11/2018. (If comments on this post get out of hand, I will disable them —Claudia Marek)
To me it’s a shame that there is rancor in the ranks. Divide the protocol with this or that and the schism will eventually doom success.
Claudia and I have worked mightily for many years. We’ve seen mistakes including our own. We rectify them ASAP. We correct them, but anguish over our failures.
GuaiAid brand is now the center of more anguish. As far as I can tell it is entirely short-acting at least in my hands. If it is “medium-acting” let’s see the proof and the submission of data to the Federal Drug Administration. It would have to withstand all of the rigors other products have had to face to prove the duration of their action.
I have had failures trying to use short-acting products (including Guai-Aid) no matter who makes them. That includes the short acting products made for Marina del Rey Pharmacy. That’s why I begin all of my patients on long-acting guaifenesin. It works smoothly over twelve hours. I restate, 600 mg twice daily begins reversal in 80% of my patients. When more is needed I increase to 1800 mg. per day (my need). When that fails to improve patients I then consider increasing to 2400 or oftentimes, adding 400 mg short acting twice, later three, or even four times per day (usually older people with nocturia).
Even at higher dosages we have failures. If we find no blockers, we then methodically raise and combine drugs to whatever it takes to restore improvement. We sometimes fall back on probenecid or Robinul our oldest remaining products. How many patients disappear from sight when even that fails? We all have failures although we don't know why.
To those from whatever group claims pure success, I can say “you’re wrong”. To leaders of whatever group who squash discussions or observations about failures, I repeat “you’re wrong”. I’ve learned from sixty years treating patients and hard study, but equally from patient inputs and their personal observations. Indeed, let the discussion freely flow. None should usurp the right to block honest statements, and no one should make personal attacks.
We have no axe to grind. We own or sell nothing. We own no pharmacies or stock in drug companies. We get no kick-backs. We sell books in the office that belong to the Fibromyalgia Treatment Center. Some profit buys more books. The rest goes to the City of Hope for research. I pay all expenses for my staff. Our integrity and reputations are dear. What more Claudia?. She steals time to write a bimonthly subscription letter and donates every cent to the Foundation even though I urge her to keep any earned profit.
The preceding is my position and on my honor I will uphold until the end of my professional life.
Unfortunately, those who mistakenly splinter the protocol may well succeed in the end. Claudia and I have only a short run left and some of these individuals and support groups may well be in control. They will help save fibromyalgic patients or guide them into failure when they are the only remaining voices.
WHAT IS SHORT ACTING GUAIFENESIN? DO I WANT IT?
This guaifenesin called short acting or immediate release guaifenesin is available in 200 and 400 mg strengths. It is sold as a store brand generic and also available from Marina del Rey pharmacy:www.fibropharmacy.com.
For those requiring higher doses than 1200 mg a day of long acting, you may add short acting to save money. A long-short acting combination is very effective: for example two long and two short twice a day seems to work for all but extremely high dose patients.
Once you have found your dose you can add short acting as per your own tolerance to speed up clearing.
WE REGRET HAVING TO POST WHAT FOLLOWS BUT DUE TO UNSCRUPULOUS MARKETING TECHNIQUES WE MUST:
DO NOT USE GUAI-AID PRODUCTS IN PLACE OF MUCINEX OR COMPOUNDED GUAIFENESIN. FOR MOST PATIENTS IT WILL NOT BE EFFECTIVE AS A STAND ALONE PRODUCT.
YOU MAY USE IT TO INCREASE YOUR DOSE BUT DO NOT TAKE ONLY GUAI-AID NO MATTER WHAT YOU ARE TOLD BY THEIR OWNER/SALES TEAM. IF YOU HAVE ANY QUESTIONS PLEASE CONTACT firstname.lastname@example.org
© 2020 Chantal K. Hoey-Sanders. All rights reserved.