“You guys are about a litre short in blood volume, ok? If I’m sitting at five litres, you’re sitting at four. So, you’re really, really sensitive to blood volume changes. If you’re a little dry, you crash. ” Dr. Nancy Klimas
The low blood volume finding in chronic fatigue syndrome has been consistently replicated; there is no doubt that low blood volume is common in this disorder. Low blood volume can cause, among other things, reduced blood flows to the brain (cognitive difficulties), problems standing (orthostatic intolerance), increased heart rates and reduced heart functioning.
While not the entire answer to chronic fatigue syndrome, increasing blood volume can be quite helpful.
- Maggies ‘Panic’ – Check out Dr. Bell’s story of an ME/CFS patient who’s panic attacks turned out to be a result of her bodies attempt to deal with low blood volume. ‘Maggie’ improved tremendously using salt and Florinef and for two days she was back to her old self but then mysteriously relapsed. Indeed, a study that used drugs to increase blood volume found while they did increase functionality in ME/CFS patients they were not cured. A recent study suggests blood pooling in the legs may be a more important factor. See The Exercise Intolerance in ME/CFS and FM Explained?
- The Blood Volume Paradox in Chronic Fatigue Syndrome and POTS – a recent study examines why blood volume is low and suggests that desmopressin, an analogue of vasopressin, may be helpful
- NIH Funds Chronic Fatigue Sydrome (ME/CFS) Grant to Increase Blood Volume – Marvin Medow begins a study examing how effective oral rehydration solution is in increasing blood volume. He believes this cheap and easy to make solution may be more effective than saline
- See much more on low blood volume including how to diagnose and treat it, and how to make ORS in ourOrthostatic Intolerance Resources section
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.
“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.
Increasing salt intake will only work, though, 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.
Be consistent! – Dr. Rowe suggests that patients who make a serious (i.e. consistent) effort at increasing their fluid intake will benefit the most. He recommends drinking a glass of liquid every two hours with a goal of drinking at least two liters of water a day (approximately half a gallon). If you’re trying to increase both blood volume and salt tomato juice is an excellent choice.
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 are generally very supplement rich and often focus on hormones.
He believes ME/CFS patients often ‘drink like a fish and pee like a racehorse’ because their whacked out 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.)
- 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.
Give the program 6 to 12 weeks to take effect. For Dr. Teitelbaum’s complete article click here.
Dr Cheney on Increasing Blood Volume
Dr. Cheney recommends
- Lying down -Lying down increases your cardiac 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.
Hydralyte (Gookinaid) is used in athletic events such as marathon running.” The makers of Gookinaid state “Gookinaid is effective because it contains the same proportions of potassium and sodium and the same concentration of glucose as blood so that it’s absorbed directly from the stomach into circulation. 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
- 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.)
You can add 1 cup of Seltzer Water in there too, however, if you do, you need to double the amounts of Sea Salt & “No Salt” as has been done in the recipe below.
Cheney recommends four to eight glasses Gookinaid or Homebrew a day.
- Oral Rehydation Solution – The World Health Organization’s oral rehydration solution costs just pennies to make. Could it be more effective than saline IV’? One researcher thinks it just may be. Find out how to make it here.
- Salt/C Plus Protocol for Lyme Disease – a high salt/Vitamin C protocol the creators swear is effective for Lyme. A book is available.
- NUUN – Some people have found NUUN tablets helpful.
- 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. (It is similar to oral rehydration solution – Cort) 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).”
Blood Volume Enhancers
- Fludrocortisone (Florinef)
- Erythropoietin (Procrit, Epoietin-alpha)
- Saline Solution
- Oral Contraceptive Pills
- Vasopressin (Desompressin) – a small study find it’s effective for some with ME/CFS/POTS.
Drugs That Effect Epinephrine/Norepinephrine Release
- Atenolol (Tenormin)
- Propanolol (Inderal)
- Disopyramide (Norpace)
- Angiotensin converting enzyme inhibitors/angiotensin receptor blockers
Drugs That Increase Blood Flows by ‘Tightening’ Blood Vessels
- 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.
- Pyridostigmine bromide (Mestinon) – Mestinon did wonders for one ME/CFS/POTS patient. Check out her story in A Mestinon Miracle.