- Resource Type
- Report or Study
- Doctor recommends
- Rowe, Lapp, Cheney, Bell and other ME/CFS doctors
Many people with chronic fatigue syndrome (ME/CFS) and/or postural orthostatic intolerance syndrome (POTS) have low blood volume which causes or enhances the symptoms many experience while standing.
Non-Drug Approaches
Elevating Your Head While Sleeping
In what’s surely the easiest practice simply elevate the head of the bed six inches by putting some risers under the bed legs at the head of the bed (or by using a body-length wedge shaped cushion. NASA uses this approach to recondition its astronauts after spaceflights. One person (see comments below) found a dramatic improvement in his sleep after doing this for a week.
Use the World Health Organization's Oral Rehydration Solution Recipe
In a small 2019 study, Marvin Medow Phd found the WHO's ORS solution more effective than IV saline at relieving the orthostatic intolerance in young people with postural orthostatic tachycardia syndrome (POTS) - most of whom met the criteria for ME/CFS.
Medow's study participants drank 1 litre of ORS 30 minutes before being tested.
Among others, the ORS normalized blood flows to the brain - a major issue in chronic fatigue syndrome (ME/CFS) and POTS - reduced symptoms, improved low blood pressure, etc.
See - Low Brain Blood Flows and Orthostatic Intolerance Ubiquitous in Chronic Fatigue Syndrome (ME/CFS)
Medow recommended preparations by Jianus Brothers or Normalyte. TriOral packets available on Amazon.com also contain the WHO formula.
Medow warned that using table sugar (sucrose) instead of dextrose does not work. Most ORS recipes on the internet use table sugar.
For more see - Oral Rehydration Solution More Effective than Saline IV at Improving Orthostatic Intolerance
Salt
Many people with chronic fatigue syndrome crave salt. Increasing your salt (with your doctor’s permission) and fluid intake can increase your blood volume increasing blood flows to your heart and brain, enabling you to stand more easily and think more clearly. Drinking large amounts of salt water, however, can be dangerous and is not recommended.
Rowe cautions that increasing salt intake will only work if you increase your fluid intake as well for (see below). Increasing salt intake should be done slowly and is often achieved simply by eating saltier foods. Some ME/CFS and POTS patients who already had low salt intake have had dramatic improvements by increasing their salt intake. Do not increase your salt intake, however, if you have high blood pressure.
The Doctors Speak
Dr. Teitelbaum’s Treatment Recommendations For Low Blood Volume
In August 2009 Dr. Teitelbaum released his treatment recommendations for low blood volume. Dr. Teitelbaum is a well known ME/CFS physician associated with the Fibro Fatigue Centers. His protocols often focus on supplements and hormones.
He believes ME/CFS patients often ‘drink like a fish and pee like a racehorse’ because their damaged hypothalamus’s are knocking down their adrenals.
Dr Cheney on Increasing Blood Volume
Dr. Cheney recommends:
It increases blood volume without diluting the blood; this means that there isn’t an excess of water for the kidneys to have to eliminate, and less water is lost in urine as happens when you are drinking plain water.
Solutions with an excess of sodium help to retain water but, in the tissues, not in circulation. Excess sodium has to be excreted, ultimately causing more fluid loss and the loss of your own potassium in keeping up with the sodium losses.”
The only problem for some patients is that Gookinaid has some sugar (glucose) in it.
Dr. Cheney’s homebrew may not be as effective but it has no added sugar.
Dr. Cheney’s Homebrew
Cheney recommends four to eight glasses Gookinaid or Homebrew a day.
Others
Several different types of drugs can assist with blood flow in chronic fatigue syndrome
Blood Volume Enhancers
Non-Drug Approaches
Elevating Your Head While Sleeping
In what’s surely the easiest practice simply elevate the head of the bed six inches by putting some risers under the bed legs at the head of the bed (or by using a body-length wedge shaped cushion. NASA uses this approach to recondition its astronauts after spaceflights. One person (see comments below) found a dramatic improvement in his sleep after doing this for a week.
Use the World Health Organization's Oral Rehydration Solution Recipe
In a small 2019 study, Marvin Medow Phd found the WHO's ORS solution more effective than IV saline at relieving the orthostatic intolerance in young people with postural orthostatic tachycardia syndrome (POTS) - most of whom met the criteria for ME/CFS.
Medow's study participants drank 1 litre of ORS 30 minutes before being tested.
Among others, the ORS normalized blood flows to the brain - a major issue in chronic fatigue syndrome (ME/CFS) and POTS - reduced symptoms, improved low blood pressure, etc.
See - Low Brain Blood Flows and Orthostatic Intolerance Ubiquitous in Chronic Fatigue Syndrome (ME/CFS)
Medow recommended preparations by Jianus Brothers or Normalyte. TriOral packets available on Amazon.com also contain the WHO formula.
Medow warned that using table sugar (sucrose) instead of dextrose does not work. Most ORS recipes on the internet use table sugar.
For more see - Oral Rehydration Solution More Effective than Saline IV at Improving Orthostatic Intolerance
Salt
“The reduction in salt, which is a good idea for most people, may push orthostatic intolerant people into having symptoms of OT” Dr. Peter Rowe
Many people with chronic fatigue syndrome crave salt. Increasing your salt (with your doctor’s permission) and fluid intake can increase your blood volume increasing blood flows to your heart and brain, enabling you to stand more easily and think more clearly. Drinking large amounts of salt water, however, can be dangerous and is not recommended.
Rowe cautions that increasing salt intake will only work if you increase your fluid intake as well for (see below). Increasing salt intake should be done slowly and is often achieved simply by eating saltier foods. Some ME/CFS and POTS patients who already had low salt intake have had dramatic improvements by increasing their salt intake. Do not increase your salt intake, however, if you have high blood pressure.
- Dig Deeper: Some great tips on increasing salt intake from POTSRecovery
- Dig Deeper Martha Kilcoyne received dramatic benefits from increasing her salt intake.
The Doctors Speak
Dr. Teitelbaum’s Treatment Recommendations For Low Blood Volume
In August 2009 Dr. Teitelbaum released his treatment recommendations for low blood volume. Dr. Teitelbaum is a well known ME/CFS physician associated with the Fibro Fatigue Centers. His protocols often focus on supplements and hormones.
He believes ME/CFS patients often ‘drink like a fish and pee like a racehorse’ because their damaged hypothalamus’s are knocking down their adrenals.
- Hydrate yourself by drinking lot of water. Check your hydration levels by checking your mouth and lips to see if they’re dry.
- Use salt liberally – keep all that water your drinking around eating a lot of salt. Eat salty foods. (V-8 juices have a good blend of salt and other electrolytes. ) Unless you have high blood pressure or heart failure, you need more salt than most people. (He believes worries about salt are one of the great myths of modern medicine.)
- Improve adrenal support by taking Adrenal Supplements.
- If your doctor can supply them try saline IV’s. (Dr. Bell has reported that several of his patients respond very well to plain saline IV’s). Dr. Teitelbaum recommends turning the saline IV’s into Meyer’s cocktails if you can.
- Even if your blood tests for iron (ferritin) are only modestly low (or below 50) or the iron percent saturation blood test is under 25%, Dr. Teitelbaum suggests you take iron (1-2 tablets 29 mg. w/vit. C) each afternoon or evening on an empty stomach for 4-6 months.. He’s found that iron supplementation can increase energy dramatically in ME/CFS patients with a ferritin level under 50.
- Take testosterone and thyroid even if your test levels are normal.
- Improve heart functioning by taking mitochondrial enhancing supplements such as: D-Ribose: 5 gm (I scoop) two times a day for three weeks, twice a day thereafter/ acetyl L carnitine (500 mgs, two times a day), coenzyme Q. 10 (200 milligrams a day, Dr. Teitelbaum’s Energy Revitalization Formula.
Dr Cheney on Increasing Blood Volume
Dr. Cheney recommends:
- Lying down -Lying down increases your cardiac output a ‘whopping’ 2 liters a minute. Some patients, he cautions, have more symptoms lying down.
- Increasing your fluid intake using Hydralyte (Gookinaid) or his HomeBrew particularly in the first six or seven hours of the day. (Some patients do not tolerate blood volume enhancement later in the day.
It increases blood volume without diluting the blood; this means that there isn’t an excess of water for the kidneys to have to eliminate, and less water is lost in urine as happens when you are drinking plain water.
Solutions with an excess of sodium help to retain water but, in the tissues, not in circulation. Excess sodium has to be excreted, ultimately causing more fluid loss and the loss of your own potassium in keeping up with the sodium losses.”
The only problem for some patients is that Gookinaid has some sugar (glucose) in it.
Dr. Cheney’s homebrew may not be as effective but it has no added sugar.
Dr. Cheney’s Homebrew
- 1 cup filtered or spring water
- 1/8 teaspoon of Sea Salt
- 1/8 teaspoon of “No Salt” salt substitute (potassium).
- Add lime juice or an herbal teabag as well as stevia for taste (or something to give it flavor without altering the electrolyte balance: peppermint, peach, raspberry zinger, etc.)
Cheney recommends four to eight glasses Gookinaid or Homebrew a day.
Others
- World Health Organization's Home-Made Oral Rehydration Solution - easy to make, scientifically proven means of increasing blood volume. (Does require sugar). As of 2017 under study in ME/CFS.
- Salt/C Plus Protocol for Lyme Disease - a high salt/Vitamin C protocol the creators swear is effective for Lyme. A book is available.
- Gastrolyte - See comments below for patient who’s benefited greatly from Gastrolye.
- Pedialyte – From Wikipedia: “Pedialyte is an oral electrolyte solution manufactured by Abbott Laboratories that is designed to replace fluids and minerals that are lost when a child has diarrhea with or without vomiting. Pedialyte is designed to promote quick fluid and electrolyte absorption while a child is sick and contains the quantity and ratio of the sugars glucose and fructose, and electrolytes recommended by the American Academy of Pediatrics (AAP). This makes it very low in sugar compared to most sports drinks (100 calories/liter vs. Gatorade’s ~200) and higher in both sodium (1,035 mg/L vs. Gatorade’s 465) and potassium (780 mg/L vs. Gatorade’s 127).”
Several different types of drugs can assist with blood flow in chronic fatigue syndrome
Blood Volume Enhancers
- Clonidine
- Fludrocortisone(Florinef)
- Erythropoietin (Procrit, Epoietin-alpha)
- Saline Solution
- Oral Contraceptive Pills
- Vasopressin
- Atenolol (Tenormin)
- Propanolol (Inderal)
- Disopyramide (Norpace)
- Angiotensin converting enzyme inhibitors/angiotensin receptor blockers
- Stimulants (Ritalin, Dexedrine, Adderall)
- Midodrine (ProAmatine, Amatine, Grudron
- Modafanil (Provigil)
- Pseudoephedrine (Sudafed)
- Selective serotonin reuptake inhibitors such as fluoxetine (Prozac), sertraline (Zo0loft) and escitalopram (Lexapro) or related medications like Effexor Cymbalta.
