Lecture summary of November 2007 talk on CFS by Dr. Kenny De Meirleir
Dr. Kenny De Meirleir spoke in Perth, Western Australia on November 3rd 2007. Kenny has seen over 12000 CFS patients and first became interested in CFS in 1989. His research team has performed over 4000 in vitro experiments and published many peer reviewed articles on CFS. I attended both his talks to the general public and to health professionals, plus got the opportunity to ask a large number of questions after the professionals talk. The following is based on written notes and from memory, not directly quoting Kenny.
Blake Graham, BSc (Honours), AACNEM
Perth, Western Australia
More than 80-90% of patients have gastrointestinal symptoms. Gastrointestinal abnormalities range from one end of the gastrointestinal tract to the other. Saliva pH is low (below 7 - acidic) which leads to both dental problems and disturbed oral flora. Patients display delayed gastric emptying. Biopsies of gastric mucosa on patients show all patients have atrophic gastritis. When biopsy of the cecum is performed infiltration of lymphocytes is also found in all patients. In Kenny’s last 100 patients a point 2 cm’s right then 2 cm’s down from the umbilicus is tender after mild pressure. This is the point just above the cecum. Tenderness is a sign of imbalanced intestinal bacteria.
Intestinal mucosal health.
Patients have a compromised gastrointestinal mucosal integrity which contributes to immune activation and is a major factor in CFS. The cause of intestinal barrier damage is multifactorial and complex. One factor is likely viruses (EBV and HHV6). EBV attacks the immune system of the gut. Kenny has observed a significant proportion of patients with CFS have relatives with Crohn's Disease. A genetic predisposition to gastrointestinal problems likely exists.
Kenny routinely does a blood test for IgA and IgM for a range of intestinal bacteria called the Immunobilan test. He generally starts treatment with antibiotics to lower levels of problematic bacteria then adds in probiotics. Kenny did a small study using the antibiotic ciprofloxacin and high quality probiotics. Patients reported a 58% improvement and elastase dropped 74%. Kenny most commonly uses a high potency multi-strain probiotic called VSL#3 (www.vsl3.com/) which contain 450 billion bacteria per serve. [Normal probiotics contain 25 billion or less.] It mimics the bacteria normally present in the bowel. [In Australia VSL#3 can be ordered via www.orphan.com.au/vsl.htm] He also uses Mutaflor which is a supplement of healthy intestinal E. coli bacteria. This product is produced in Germany.
Fructose malabsorption and lactose intolerance.
In a study of 143 patients fructose malabsorption was found in 45.8% of patients. Lactose intolerance was found in 20.3%. Both can be measured via a simple hydrogen breath test. 25 grams of fructose or lactose is administered to a fasting patient. Breath hydrogen levels are measured before administration and at 30 minute intervals for 3.5 hours. Sugar malabsorption contributes to intestinal dysbiosis, among other issues. Fructose malabsorption is treated with a fructose poor diet, while lactose intolerance is treated with a lactose free diet. A high baseline hydrogen breath measurement indicates intestinal bacterial overgrowth. Clinicians can buy the equipment to do the fructose and lactose breath testing in their offices. Kenny believes these intolerances were present before the illness onset, acting as a predisposing factor and may also get worse after illness onset. He observes these issues are often present in family members. Common associations with fructose malabsorption are:
- Fatty liver. Most patients with fatty liver have fructose malabsorption.
- Steatorrhea (fat in the stool/fat malabsorption).
- Constipation whereas those with lactose intolerance are more likely to have diarrhoea.
- Hypoglycemia. Most patients with significant hypoglycemia have fructose malabsorption.
- Sensitivity to tyramine.
[In Australia breath testing can be done by ordering kits from Australian Breath Analysis Laboratory. (www.abal.com.au/)]
Gluten intolerance is also found in a subset of patients. He uses IgG blood testing for testing gluten sensitivity. Sensitivity to gluten is a spectrum with celiac disease at one end and normal tolerance at the other, rather than tolerance being an all or nothing issue. A range of different levels of sensitivity exist.
Kenny’s patients consult with his dietitian. A diet is created based on tolerance to fructose, lactose and gluten. He also recommends patients drink 3-4 litres of water/day.
Kenny uses the Melisa metal reactivity test (www.melisa.org/) to assess sensitivity to heavy metals. He also uses provoked urine testing using IV DMPS and EDTA. [Pathlab in Melbourne (www.pathlab.com.au) does both the Melisa test and urine heavy metals.] The two heavy metals of most significance are mercury and nickel. Nickel is found in soil and enters our food supply. Amalgam fillings are one source of mercury and Kenny suggests careful removal when patients are sensitive to mercury. Kenny presented in vitro evidence supporting greatly increased sensitivity to the toxic effects of mercury in CFS patients. He has found palladium in some patients and based on this elevation is able to predict where in Belgium patients live with a high degree of accuracy. Increased levels of heavy metals are likely due to increased intestinal uptake and genetic abnormalities is certain detoxification proteins, including multidrug-resistance protein 1 (MRP1). The two options for treatment include pharmaceutical chelators (DMPS or DMSA – which are available via compounding pharmacies) or combination products of herbs/nutrients (dose = 2x1/day) designed for detoxification. The names of the Belgium herbal/nutritional formulas are:
- TMD (Toxic Metal Detox - www.labosp.com/lib/compendium_an/INT_165.pdf).
- HMP (Heavy Metal Protect - www.labosp.com/lib/compendium_an/BE_165.pdf).
Glutathione is low in patients. It can be treated via taking lipocuetical glutathione made by Readisorb. (www.readisorb.com/) Normal oral glutathione is ineffective as it is broken down in the gut and transdermal glutathione has variable metabolism. The benefit of IV glutathione is relatively short lived. N-acetyl–cysteine (NAC) can also boost glutathione but large doses are needed (1.8 grams).
The basic nutritional supplements Kenny recommends commonly to patients are:
- Lipoceutical glutathione
- Vitamin C
- Lipoic acid
- Coenzyme Q10
- Alkalizing agents (e.g. potassium bicarbonate)
Nexavir and vitamin B12.
Nexavir (Kutapressin) is used effectively in combination with subcutaneous vitamin B12. In one study of a general group of CFS patients, 63% of patients in the treatment group responded while only 17% of the placebo group responded. In Kenny’s experience with these treatments around half of patients are pain free in 2-3 months and sleep often normalizes within a period of 3 days. Nexavir is a liver extract from pigs. It cuts immune activation and lowers elastase. 10 mg’s of vitamin B12 are used twice weekly in the form of methyl or hydroxy B12. [Most B12 shots contain 1 mg.] B12 scavenges nitric oxide (NO), often clearing up brain fog and helping with cold extremities. [In Australia compoundingonoxford (www.compoundingonoxford.com.au/) produce 10 mg methyl-B12 injections selling for just $5.75 each.] Nexavir is not available in Australia but with a prescription can be ordered from a Texas pharmacy called Nexco Pharma (www.nexcopharma.com/).
Isoprinosine and inosine.
When asked about the immune modulating medication Isoprinosine [which boosts natural killer cells], he mentioned that the basic amino acid version of inosine is as effective. [Inosine is available in Australia as an over the counter nutritional supplement. One brand which produces it is Musashi - www.musashi.com.au.]
The role of HHV6 is being actively debated. A subgroup of patients have a mild HHV6 related encephalitis. HHV6 can be treated with antivirals (e.g. valcyte) and immune modulators. HHV6 is associated with neurological symptoms with extreme fatigue and no pain. Patients with active HHV6 are usually in the 15-35 age group. He doesn’t think herpes viruses are the cause of CFS but rather become reactivated.
Mycoplasma is active in the presence of low NK and T cell function. Mycoplasma releases antigens which further disrupt immune function. Antibiotics (e.g. doxycycline) for mycoplasma positive patients have shown success although it is unclear if this is due to antibiotics treating mycoplasma, rickettsia or intestinal bacteria.
Chlamydia pneumoniae is present in a subgroup of patients. It stimulates heat shock proteins leading to immune activation. It can be treated with azithromycin.
Rickettsia, bartonella and coxiella.
8-10% of Kenny’s patients have an active rickettsia, bartonella or coxiella infection. Only 17% remember having a tick bite. These infections can come from ticks, dogs and cats. Ticks can carry many viruses and other infections. Australian research has found Rickettsia in a significant amount of Australian patients.
Candida infection is found in some patients and is tested for via IgG blood testing. This is treated via dietary modification and antifungals. Yeast is typically resistant to nystatin so other antifungals are used. A recent study found 20% of patients have elevated bowel candida levels.
Some patients are affected by mycotoxins, toxins produced by environmental mold. Kenny suspects mycotoxins when two people in the same house have CFS or when symptoms significantly reduce when leaving your home for a period of days. It is more likely to be an issue in poorly ventilated houses and is known to act as an immune suppressor. Aspergillus Niger has been cultured in some homes of CFS patients. Mycotoxic patients have very low glutathione levels and glutathione helps the removal of mycotoxins from cells.
Thyroid dysfunction is present despite normal blood tests. There is both poor conversion of T4 to T3 and peripheral resistance to T3. An immune activation protein has a 98% homology with the T3 receptor, binding to it and competing with T3. Kenny recommends treating with pure T3. He recommends starting low and titrating up. Patients appear to have destruction of T3 receptors over time and after a long duration of CFS (e.g. 20-25 years) often do not lose weight on extremely low calorie diets (e.g. 800 calories) due to thyroid insensitivity.
When asked about treating insomnia Kenny said to take away the source of the problem. He stated that with nexavir his patients often sleep normally after 3 days. If sleep cycle shift is present he treats with melatonin (6 mg’s) or an old anti-epileptic. [I did not catch the name.] He does sleep studies for sleep apnea and restless leg syndrome when indicated.
Laboratory testing in Australia.
Kenny uses a number of highly specialised laboratory tests to assess his patients. It is hoped these tests will be available in Australia in the future.