CFIDS and FMS Support Group of DFW


Many CFIDS/FM patients suffer from a condition called NMH or Neurally-Mediated Hypotension. (Hypotension means low blood pressure and neurally-mediated means caused by the brain.) Many doctors are not aware that it is often a symptom or side effect of CFIDS/FM. NMH is a miscommunication between the brain and the heart that can cause lightheadedness, dizziness, weakness, fatigue, nausea, mental confusion, headaches, muscle aches and profuse sweating. It can occur after exercise, a period of standing (or even just sitting upright), or exposure to a warm environment. Some experience the symptoms after emotionally stressful events, since an inappropriate response to adrenaline is involved. Some experience the symptoms soon after eating, when blood flow shifts to intestinal circulation. Instead of sending signals to speed up the heart, the brain tells the heart to slow down and the vessels in the arms and legs to dilate. Blood pools in the extremities and not enough stays in the brain. Keep in mind that even people with high blood pressure can experience NMH. NMH is a symptom of CFIDS, not its cause. NMH is part of the larger picture of disregulation of the autonomic nervous system common to CFIDS. 

NMH is often treated with a drug. However, many national CFIDS specialists recommend a salt and water protocol. The following is Dr. Cheney's protocol and is based on a taped conversation and notes he made. This is distributed and with his permission. 

1) Drink 6 to 8 glasses (8 oz each) of fluid a day. (48 to 64oz total daily intake) Two or three times a day dissolve 1/4 to 1/2 tsp of sea salt in 3 to 4 oz of water and drink it. (This liquid is part of your total intake, not in addition to it.) Cheney strongly urges that sea salt be used for this, not table salt. Sea salt matches the mineral balance of our bodies. As with all drugs, supplements, and treatments, start with the lower dose and work up. 

2) Don't drink excessively. Do not drink more than 64 oz. of water a day (unless you're sweating a lot or something.) Excessive water intake sets in motion a chain of events that leads to excessive water loss, worsening the very condition you are trying to address. 

3) If NMH symptoms still persist take 2 licorice root tablets with glycerizzin two times a day. Do not buy deglycerizzed licorice root. Blood pressure must be monitored when taking licorice root! It's not uncommon to become hypertensive. Taking licorice root is almost like taking the drug Florinef (commonly prescribed for NMH) but without the side effects. 

4) If symptoms have not improved or have become worse ask your doctor to check you for Diabetes Insipidus (DI). (This is not the same condition as the more familiar Diabetes Melitus in which the pancreas does not produce enough insulin. Diabetes Insipidus results when the pituitary or hypothalamus are not functioning normally. The only thing the two conditions have in common is are the symptoms of excessive thirst and frequent urination.) If the DI test is positive, Cheney usually treats it with Vasopressin nasal spray. Cheney finds that about 50% of CFIDS patients show low-level DI. (Not surprising, given that the HPA axis - hypothalamus/ pituitary/adrenal - is suppressed in CFIDS.) Low level DI might respond to salt and water and licorice treatment. High level DI will not respond at all to those treatments, and without Vasopressin those patients cannot keep their blood volume up high enough. 

Note: Dr. Cheney has found that Florinef is not a good treatment option for NMH in most CFIDS patients. Florinef forces potassium depletion and further suppresses the HPA axis, which is already suppressed. Initial short-term benefits are seen with Florinef, but they degrade over time. With extended use Florinef actually exacerbates the disease in many patients. 

Much Cheaper Cholestyramine Source

A woman who read the newsletter articles (Oct 01, Jan 02, April 02) on our website about the drug that binds and eliminates chronic neurotoxins sent the following information. I've edited in some information in parentheses, particularly for new members. Carol

I called the compounding pharmacy (Abrams Royal in Dallas) that was listed on your support group website to inquire about sugar-free, aspartame-free cholestyramine for Dr. Shoemaker's Neurotoxins protocol ( that Dr. Cheney is going to implement. I was astounded to see that they are charging $340 for 100 grams. I checked in Canada and found out that you can get the same amount for about $15. So I challenged a couple of compounding pharmacies that I have used to come up with a better price. You might want to let your subscribers know that Clark's Pharmacy in Bellevue, WA, is offering 500 grams of the sugar-free cholestyramine for only $100, vs. $1700 for the compounding pharmacy that Dr. Raines uses. Clark's Pharmacy can be reached at 425-881-0222. 

I appreciate the information you guys provide and hope that this new source for the neurotoxin detoxification program medicine in "Desperation Medicine" will be helpful to your subscribers. I've been using it. It's completely free of everything but pure cholestyramine resin. I wanted to start the procedure quickly so I tried the sugar kind and put on 25 pounds in six weeks so knew I had to get the pure version. None of us can tolerate Aspartame either. Clark's Pharmacy in Bellevue, Washington is only about $25 more than Canada and when you figure in 6 weeks of shipping for Canada and shipping costs, it's almost a wash. Mark Clark is a great guy. His father was also a pharmacist so he has many more resources than the typical pharmacist. Plus he knows I haven't worked in many years and can't afford a lot. I told him if he couldn't get a good price that I would go to Canada. 

I have another tip. Cholestyramine resin doesn't taste very good, so I put it in pure sugar-free cranberry juice from the health food store. The juice is so sour that I can't taste anything I put in it. It works really well. (You can also try adding a few drops of clear, liquid Stevia from any health food store - fantastic herbal sweetener with no chemicals or calories.) 

God really blessed me with this resource. I couldn't believe it when I heard what the other pharmacy was charging. Another good resource is We can order through this site and it's great for comparing prices -- that's how I found out how cheap the cholestyramine resin actually is.
Liz in Washington State. 

Separator Bar

Search: Enter keywords...                            logo

Easy search for the site. Check out their books and music.

Separator Bar

e-Mail Home

Separator Bar

Web design and hosting compliments of Virtual Home Town

Back to Top of Page

Update 01/10/05. For questions or comments concerning this site, please contact Lori or Deborah.

Copyright © 1999-2005 by the CFIDS/FMS Support Group of DFW. All rights reserved. 

Some of the graphics were by Lolis Golden Pages and Hee Yun's Graphic Collection; they are no longer found on the web.