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What tests would you suggest for my 14 yr old young lad?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by JoanDublin, Jul 11, 2014.

  1. JoanDublin

    JoanDublin Senior Member

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    Dublin, Ireland
    To all you wise and wonderful members here, I am looking for guidance on the type of testing that you think would be useful to request for the following list of symptoms which my young lad is exhibiting. He has been diagnosed as having ME/CFS but I feel that not everything was checked before reaching that conclusion. Basically Im trying to ensure he gets as much testing as possible to rule in or out other conditions. Any advice is very much appreciated.

    Symptoms
    1. Chronic fatigue which is not helped by sleeping (had full blood count - normal). Tyhroid function normal
    2. Complete sleep reversal which has gotten worse over the past couple of months (doesn’t sleep til anywhere between 6am and 8am most nights/mornings).
    3. Bone pains
    4. Muscle pains
    5. Unable to control body temperature (i.e. he feels roasting hot particularly at night and sometimes this can quickly swing to feeling freezing cold)
    6. Regular (almost daily) nosebleeds (had cauterisation 12 months ago and has worsened since - awaiting another specialist appointment)
    7. Hearing loss - has been referred for a hearing test
    8. Blurred vision
    9. Balance problems (he cant walk a straight line without veering wildly to the side)
    10. Severe lack of energy to do anything physical and if he does do anything he suffers extreme forms of exhaustion for days and sometimes weeks afterwards
    11. Occasional tiny blister like rashes which mostly appear on the soles of his feet and on his hands
    12. Joint pains – knees sometimes sieze up
    13. Total loss of bowel function (had contrast enema and rectal biopsy - all normal)
    14. Permanent tenderness (almost two years) in the upper left quadrant in his abdomen
    15. Ongoing sharp pain in his rectum
    16. Regular stomach cramps (often describes them like a hunger pain feeling)
    17. Regular bouts of nausea interspersed with vomiting now and again (sometimes smells of faecal matter)
    18. Short term memory problems. Sometimes he can’t remember something I told him a minute before.
    19. Poor concentration. Can’t concentrate enough to read, finds it hard to watch/follow TV at times, etc.
    20. Has developed problems with reading akin to dyslexia (he sees different words than actually appear on the page and after checking them five or six times the proper word 'appears' to him- never had this problem before he got ill). His reading has also become very ‘slow and faulty’. He was a fluid reader before he got ill.

    (added in later)
    21. Tinnitus for past seven months
    22, Light sensitivity

    All of this was preceded by him getting three viruses in succession in May/June 2012 (EBV, viral pneumonia and chickenpox). Having recovered fairly well he contracted another bad stomach virus in September 2012 which caused his body to completely crash. He has been ill ever since with the exception of a spontaneous period of recovery in summer 2013 for seven weeks when everything just went back to normal. After that in Sept 2013 he contracted another virus in school and has been ill ever since.

    I think thats about it! Any guidance would be appreciated!
    Thank you all very much
    Joan
     
    Last edited: Jul 11, 2014
  2. SOC

    SOC Senior Member

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    @heapsreal frequently points me to a document that lists tests in a logical sequence. Of course I always save it, and of course I always forget where I saved it and what it's called so I can't find it again. :bang-head: I swear this time I'm going to print a hard copy and tape it to my computer. :rolleyes:
     
  3. JoanDublin

    JoanDublin Senior Member

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    Dublin, Ireland
    Lol! I know the feeling! I have so much info and paper stuff saved, unsaved, deleted, filed, unfiled, lost, hidden in drawers, upstairs, downstairs.....my head is spinning with it!
     
    WillowJ likes this.
  4. xchocoholic

    xchocoholic Senior Member

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    Florida
    Cdsa, allergy and nutritional deficiencies. Tc .. x
     
    JoanDublin likes this.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Chronic Fatigue Syndrome
    A Roadmap For Testing And Treatment




    Introduction
    Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME), is a neurological condition characterized by cognitive dysfunction, mood disorders, fatigue, post-exertional malaise, and many more symptoms.

    The following guidelines are an aid to determining: (1) whether you have chronic fatigue syndrome, and if so: (2) which laboratory tests should be performed to identify the infections and other causal factors that underpin your ME/CFS, and: (3) what treatments you can follow to address these infections and causal factors, and treat the symptoms that arise from them.




    Chronic Fatigue Syndrome Diagnosis
    There are currently no laboratory tests or biomarkers that can be singularly used to diagnose ME/CFS, so diagnosis is performed on symptoms alone. ME/CFS manifests a whole array of clinical symptoms,1 2 both physical and mental/cognitive, which typically include the following:


    SYMPTOMS OF CHRONIC FATIGUE SYNDROME
    Persistent fatigue
    not due to ongoing exertion, and not really relieved by rest. The fatigue is of a new onset, and and greatly reduces activity levels, compared to before the onset.Cognitive dysfunction (brain fog): short-term memory and working memory deficits, problems recalling words or names, disorientation, loss of focus and awareness.Mood disorders which may include: emotional sensitivity, emotional lability (marked fluctuation of mood), irritability. Anxiety, panic attacks, and depression are comorbidities also often found in ME/CFS.Post-exertional malaise: symptoms profoundly worsen after physical and/or mental exercise, leaving an individual very incapacitated for several days, or even weeks, after exertion.
    Headaches of a type not previously experienced. Tinnitus, dizziness, balance problems, fainting, irregular heartbeat. Abdominal pain, irritable bowel, diarrhea. Unrefreshing sleep.Chronic sore throat or recurring sore throat (often from the virus that initiated the ME/CFS condition), chronic cough, chest pain, dry mouth, dry eyes, blurred vision.Sensitivities to light, noise and chaotic or busy environments. Sensitivity to heat and/or cold. Increased allergies or sensitivities to foods, alcohol, odors, chemicals or medications.Muscle aches or weakness, tingling sensations. Enlarged or painful lymph nodes in neck and armpits. Joint pain moving from one joint to another without swelling or redness.

    For the complete set of symptoms formally used for ME/CFS diagnosis, see the:

    Canadian Consensus ME/CFS Definition, CDC 1994 CFS Criteria.


    Ruling Out Other Conditions

    The inherent problem with diagnosing ME/CFS by its symptoms is that many of the same symptoms manifest in other diseases and conditions such as: Lyme disease, hypothyroidism, celiac disease, lupus, anemia, hepatitis B or C, and many others. Thus if you have symptoms resembling chronic fatigue syndrome, you and your doctor first need to rule out diseases and conditions with very similar symptoms before a diagnosis of ME/CFS can be given with reasonable certainty.
    RULING OUT CONDITIONS SIMILAR TO ME/CFS
    ConditionTests and Results Interpretation
    Lyme disease

    Lyme disease is caused by a chronic infection with certain species of Borrelia bacteria, these bacteria being contracted through the bite of infected Ixodes ticks. Bites from Borrelia-infected ticks often (but not always) cause a characteristic erythema migrans rash. Early symptoms of Lyme disease include: fever, headache, fatigue and depression.Borrelia culture. This is a more reliable test for the Borrelia bacteria that cause Lyme disease. It is available at Advanced Laboratory Services .

    Borrelia IgM and IgG antibodies. Dr A Martin Lerner uses Western blot and ELISA to test for Borrelia burgdorferi IgM and IgG antibodies.1

    More info on testing for Lyme disease: Lyme Testing

    Lyme and ME/CFS differences in symptoms: in Lyme there is often pain and swelling in the large joints, most often the knees; by contrast in ME/CFS there can sometimes be pain in the joints, but this occurs without swelling. Facial palsy can occur in Lyme, but this does not occur in ME/CFS. A chronically stiff neck is common in Lyme, but not common in ME/CFS. These differences in symptoms can thus act as a differential diagnosis, to help distinguish Lyme disease from ME/CFS.
    Hypothyroidism
    Hypothyroidism occurs when your thyroid gland does not produced enough of the thyroid hormone thyroxine.
    The symptoms of hypothyroidism are quite similar to those of ME/CFS. Hypothyroidism is diagnosed by a blood test which measures the levels of various thyroid hormones.
    Celiac disease
    Celiac disease is an autoimmune reaction triggered by gluten, causing damage to the small intestine and nutrient malabsorption. Celiac disease symptoms vary widely between patients.

    Info: Celiac Disease Symptoms.Transglutaminase antibody blood test and an upper endoscopy with biopsy of the duodenum are used to diagnose celiac disease.

    Since celiac symptoms greatly improve after removing ALL gluten from the diet, if you feel much better going gluten-free, it hints you might have celiac disease (though gluten-sensitive people without celiac disease will also feel better going gluten-free).
    Systemic lupus erythematosus (SLE)
    SLE is an autoimmune diseases that can cause various symptoms such as joint pains, muscle pains, skin rashes, fatigue and brain fog.Most people with systemic lupus erythematosus (SLE) will have a positiveantinuclear antibody test (ANA), but ANA is usually negative in ME/CFS patients. Thus the ANA test is a useful tool to help distinguish SLE from ME/CFS. Around up to 50% of SLE patients exhibit a red butterfly rash on the face, which is not found in ME/CFS.
    Anemia
    Anemia is a decrease in the number of red blood cells, or a decrease in the amount of hemoglobin in those cells, either of which results in a reduced ability of the blood to carry oxygen. The symptoms of anemia are similar to those of ME/CFS.
    Anemia can be diagnosed by a full blood count.
    Hepatitis B or C virus infectionChronic hepatitis B and hepatitis C viral infections can produce symptoms that resemble those of ME/CFS. Hepatitis B virus can be caught from unprotected sex, including anal and oral sex, and also from sharing needles to inject street drugs. Hepatitis C virus is most commonly caught by sharing of needles to inject street drugs, and is sometimes caught from unprotected sex. Your doctor or a sexual health clinic can provide testing for hepatitis B and hepatitis C virus infections.

    More comprehensive lists of diseases that have similar symptoms to ME/CFS:
    Chronic Fatigue Syndrome Diagnosis
    Chronic Fatigue Syndrome: Evaluation and Treatment
    CFS can be caused by chronic infection
    Diseases similar to ME/CFS



    Causes and Treatments of ME/CFS
    Once you have ruled out common diseases with similar symptoms, and have settled on a diagnosis of ME/CFS, then next stage is to try to identify the underlying infections and other factors that may be causing or contributing to your ME/CFS. This is best performed with the help of a doctor specializing in chronic fatigue syndrome laboratory testing and treatment.
    There are many laboratory tests that people with ME/CFS might choose to take. In this roadmap to ME/CFS testing and treatment, the tests suggested are grouped into various rounds, with the most important tests placed in the earlier rounds. After each round of testing, depending on the test results, advice on an appropriate course of action for treatment is given. Tests for causal factors that have a corresponding treatment or cure are prioritized, since the main goal of this roadmap is to guide people with ME/CFS to treatments that may improve or cure their condition.

    The suggested treatment plans are those generally employed by leading chronic fatigue syndrome doctors and researchers in the field. There are no hard and fast rules for chronic fatigue syndrome treatment, and you may wish to follow different courses of action to those given here. These guidelines are an ongoing project which aims to be reasonably comprehensive; but they are not an exhaustive chart of ME/CFS treatments.

    Research indicates that treatment-resistant ME/CFS of unproven etiology generally appears to be associated with viruses from the enterovirus genus (specifically: coxsackievirus B and echovirus) and/or to viruses from the herpes family (specifically: human herpes six virus, cytomegalovirus, Epstein-Barr virus). More treatable or curable forms of ME/CFS may be caused by parvovirus B19, Chlamydia pneumoniae, as well as other microbes. Non-microbial causes or contributory factors to ME/CFS include: mold toxin exposure and pesticide exposure. The first round of testing detailed below suggests you consider or get tested for all these microbes and causal factors.



    Notes on Pathogen Testing
    Most ME/CFS-associated microbes are very commonly found in the general population: Epstein-Barr virus, for example, is found in 95% of adults. Microbes found in the body are generally acquired from infections earlier in life, but once the immune system has them under control, these infections become largely inactive and dormant; so microbes from past infections normally exist in the body in a latent state (though these pathogens can reactivate and become more active if there is weakness in the immune system).

    When a test is performed for a microbe, we want to know not only whether you have it in your body, but more importantly, whether it is active or not. In chronic infections, the level of activity of a microbe can be gauged to a certain extent by the amount of IgG antibodies your body produces in response to that microbe. High levels of IgG antibodies tend to suggest an active chronic infection.
    Note that the activity of some microbes, notably enteroviruses, cannot be so accurately determined by antibody tests, due to the fact that these microbes can also live inside human cells, as an intracellular infection. The immune system does not readily make antibodies to microbes living inside human cells, so you may have a significant intracellular enterovirus infection, but show relatively low antibody levels when you take a test. Other means of pathogen testing may be employed in these situations. Alternative methods of testing for the presence of pathogens in the body include: PCR (polymerase chain reaction) and viral culture. Viral culture is usually the "gold standard" by which other viral detection methods are judged.

    Empirical testing. While it is always better to test for pathogens or health conditions before using treatments, because some tests are expensive, not available in all countries, or might not always be reliable or sensitive enough to detect certain pathogens, you may choose to bypass the test and go straight to treatment. This is known as empirical testing: using a treatment itself as a test for a pathogen or health condition. Empirical testing makes the assumption that if you get better on the treatment, you may well have the pathogen or the health condition that the treatment targets.

    1st Round Tests: Common Microbial Infections in ME/CFS
    The first set of ME/CFS causal factors to consider and/or test for is shown in the table below. The various microbial (and other) causal factors are listed in the left hand column, and recommended tests for these causal factors (plus some basic guidance on interpreting the test result) are given in the right hand column of the table.
    FIRST ROUND TESTS
    Causal FactorTests and Results Interpretation
    Coxsackievirus B and echovirus
    These viruses have been strongly linked to ME/CFS. There are 6 coxsackievirus B serotypes and 32 different echovirus serotypes. All are part of the enterovirus genus. If you have an active infection with coxsackievirus B or echovirus, this may be causing your ME/CFS.12 3 4


    Intracellular infections: enteroviruses can exist in two distinct forms within the body: the normal lytic virus form, which lives in the blood and tissues; and the non-cytolytic virus form, which lives inside human cells, as an intracellular infection. An enterovirus infection begins with a lytic virus, but once in the body, some of these lytic viruses can convert into non-cytolytic viruses. Because non-cytolytic enteroviruses live inside human cells, they are hard to detect. Nevertheless, Dr John Chia and other researchers think non-cytolytic enteroviruses may be a major causal factor in ME/CFS.1 2

    The prevalence of coxsackievirus B ranges from around 7% to 22% of the general population, according to a study in Greece.1
    Coxsackievirus B and echovirus antibodies. Only ARUP Lab, in Utah, has an enterovirus antibody test sufficiently sensitive enough to detect the low-level "smoldering" chronic enterovirus infections of ME/CFS. These sensitive ARUP Lab tests are: coxsackievirus B antibodies, echovirus antibodies. Titers of 1:320and higher in these tests are good indicators of an active infection. ARUP tests can be ordered directly, or ordered through Labcorp.

    Stomach biopsy (immunohistochemistry). This test, which requires a sample of stomach tissue obtained by an endoscope, is the most reliable for detecting a chronic enteroviral infection. Dr Chia's lab can process the stomach tissue sample.

    PCR testing is not sensitive for chronic enteroviral infections, as these viruses disappear from the blood after the acute phase of the infection is over (the acute phase of an enterovirus infection is a short window that starts just after initial exposure, and last for around 10 days).

    Complement fixation test (CFT) is useless for testing enteroviral activity in chronic infections. The CFT is only of value within the acute phase (first 10 days) of an enterovirus infection.

    Non-cytolytic enterovirus testing. There are no commercially available tests for non-cytolytic enteroviruses, which form an intracellular infection (they live inside human cells).

    Further info:
    Enterovirus Foundation: Testing for chronic enteroviral infections
    Enterovirus-Associated ME/CFS Etiology
    Human herpes virus six (HHV-6)
    HHV-6 is found in over 90% of adults, usually in a latent inactive state. If you have an active HHV-6 infection, this may be contributing to or causing your symptoms, as active HHV-6 is linked to ME/CFS.1 2 There are two main variants of HHV-6: variant A and variant B, often denoted as HHV-6A and HHV-6B. Tests for HHV-6 do not usually distinguish between the two variants.

    Most individuals that test positive for HHV-6 will have the more benign HHV-6B variant; but just under 3% will have the more nasty HHV-6A variant. It is this HHV-6A variant which is more strongly linked to ME/CFS.1 So a positive test for HHV-6A may be quite significant if this virus is active.

    Dr Kazuhiro Kondo has a theory that partial reactivation of HHV-6 may cause ME/CFS, as well as depression and bipolar disorder.1HHV-6 antibodies. A blood test showing an HHV-6 IgG antibody titer of 1:320or more suggests an active infection. Dr Jose Montoya believes that IgG antibody levels are a better guide to the HHV-6 activity in the central nervous system than viral culture from the blood.1

    Nested PCR for HHV-6A. Regular tests do not distinguish between the these two variants of HHV-6, so if you tested positive for HHV-6, you could have either (or both). However, nested PCR tests can specifically determine if you have HHV-6A.

    HHV-6 PCR.

    Further info:
    HHV-6 Foundation: Viral Testing
    HHV-6 Foundation: Research Papers
    Epstein-Barr virus (EBV)
    There is a high 95% prevalence of Epstein-Barr virus in the adult population, so most people will have this virus in their system, but usually in a latent inactive state. However, if you have an active EBV infection, it is possible this may be contributing to or causing your ME/CFS symptoms. New evidence indicates that some subtypes of ME/CFS may be due to partial reactivation of Epstein-Barr virus.1 2Epstein-Barr virus antibodies. A blood test showing an EBV VCA IgG antibody titer of 1:1280 or more suggests an active infection.1

    Dr A Martin Lerner says that a positive diagnosis of Epstein-Barr virus infection requires a positive EBV early antigen (EA) diffuse test, and/or a positive EBV IgM viral capsid antibodies (VCA) test.1

    Epstein-Barr virus PCR.

    Lymphocyte subset panel. If this test shows elevated CD8 T-cells, this can indicate an ongoing viral infection with EBV or cytomegalovirus, which both raise CD8 T-cells.1
    Cytomegalovirus (CMV)

    Cytomegalovirus is found in 50% of adults, usually in a latent inactive state. If you have an active CMV infection, this may be contributing to or causing your ME/CFS symptoms.Cytomegalovirus IgG antibodies. Dr A Martin Lerner says that a diagnosis of cytomegalovirus infection is made by examining the CMV IgG antibody titer. (Lerner says the IgM titer for CMV is inaccurate and insensitive.) The higher the CMV IgG titer, the greater the viral load.1

    Cytomegalovirus PCR.
    Parvovirus B19
    Parvovirus B19 is found in 50% of adults, usually in a latent inactive state. If you have an active parvovirus B19 infection, this may be contributing to or causing your symptoms.1 2 3Parvovirus B19 antibodies. A blood test showing a parvovirus IgG antibody titer of 1:?? or more suggests an active infection.
    Chlamydia pneumoniae
    Chlamydia pneumoniae, an intracellular bacterium (that lives inside human cells), is a known cause of ME/CFS. 1 This bacterium is found in a latent state in 74% of the adult population, and about 10% of the population have a persistent active infection with this bacterium, according to a study conducted in Israel.1

    Further info:
    Cpnhelp.org
    Stanford University: Chlamydia PneumoniaeAccurate Chlamydia pneumoniae testing poses significant difficulties and uncertainties. As a result, if you have a negative blood test for Chlamydia pneumoniae, this does not preclude your from having a Chlamydia pneumoniae infection.

    More info on Chlamydia pneumoniae testing:
    Diagnosis Issues | Cpnhelp.org
    Mold toxin exposure
    Mold can synthesize toxic substances (mycotoxins) that can damage the central nervous system, intestines, kidneys. These toxins have been linked to the triggering of ME/CFS

    Dr Joseph Brewer found the following mycotoxins in ME/CFS patients: ochratoxin A in 83% of patients, macrocyclic trichothecenes in 44%, and aflatoxins in 12% of patients.1 Mold growth can be visible, or it may be hidden behind walls and domestic appliances. People can become ill from hidden mold growths without knowing the cause (though a moldy, musty smell in the environment provides a warning to the possible presence of mold). Usually several species of mold can be found in a mold infestation. Mold species that have very potent mycotoxins include: Stachybotrys, Memnoniella and Acremonium. These three species depend on damp cellulose material (wood, paper, cotton) for nutrition, and thus typically thrive in water damaged-buildings that contain plenty of wood, wallpaper, etc.

    Dr Joseph Brewer et al have recently hypothesized that mold may be harbored within the body, and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. Brewer suggests that sinuses are the most likely candidate as a site for the mold and mycotoxin production.1
    Pesticide exposure
    Chronic exposure to significant amounts of organophosphate or pyrethroid pesticides can cause ME/CFS-like illnesses, or act as a co-factor in precipitating ME/CFS. 1

    Further info: PANSources of pesticide exposure include garden sprays used by you or your neighbor, which can be tracked into the house on shoes. Agricultural exposure may occur in rural areas through crop spraying. Pyrethroids are found in pet flea control products. Pesticide residues on foodstuffs are generally very minimal, and are not of concern.1 Organophosphate pesticides are detoxified from the body by an enzyme called paraoxonase; differences in the paraoxonase gene can increase an individual's susceptibility to organophosphates.1 2



    1st Round Treatments In the light of the results of the first round of tests:

    Epstein-Barr virus infection. If your tests indicate you have a chronic Epstein-Barr virus infection and no other infections, it is quite possible that your symptoms are in fact a case of chronic Epstein-Barr virus syndrome (chronic mononucleosis syndrome), which closely resembles ME/CFS. Dr. A. Martin Lerner suggests that chronic Epstein-Barr can be considered a subtype of ME/CFS. Chronic Epstein-Barr infection often clears itself up within 6 months or less, and you should then achieve remission from your symptoms. Antivirals such asvalacyclovir (Valtrex) can hasten the healing process.1

    Even if you do not have chronic mononucleosis syndrome, if your tests indicate that the EBV in your body has reactivated, this may be contributing to your ME/CFS symptoms. Dr. A. Martin Lerner has recently shown that the antiviral drugs valacyclovir (Valtrex) and/or valganciclovir (Valcyte) can be very beneficial in ME/CFS patients with reactivated EBV.1 Professor Jose Montoya also found Valcyte effective when there is an active EBV infection.1 Nexavir (formerly Kutapressin) may have some in vitro activity against Epstein-Barr virus.1Professor Jose Montoya also found Valcyte effective when there is an active EBV infection.1
    Herpesvirus infection. If your tests indicate you have an active infection with one or more of the three herpesviruses: HHV-6, cytomegalovirus and Epstein-Barr virus, then Dr. A. Martin Lerner has recently shown that an anti-herpesvirus treatment comprising the antiviral drugs valacyclovir (Valtrex) and/or valganciclovir(Valcyte) can return ME/CFS patients to a near-normal to normal life, provided you have no active co-infections with pathogens other than these three herpesviruses. Those who experience side effects from valacyclovir can substitute with famciclovir (Famvir), an antiviral which is usually much better tolerated. Unfortunately, if you have active co-infections with pathogens other than these three herpesviruses, this antiviral treatment on its own has proved ineffectual, according to Dr Lerner. However, it is possible (though not proven) that this anti-herpesvirus treatment, when combined with treatments for the other pathogens, may get results.1 Professor Jose Montoya also found Valcyte effective when there is an active HHV-6 infection.1



    The antimalarial drug artesunate has efficacy against cytomegalovirus, and against HHV-6.1 2 Nexavir(formerly Kutapressin) displays potent in vitro activity against HHV-6.1 2 The HIV drug raltegravir may be effective against the whole family of herpesviruses.1

    Enterovirus infection. If your tests indicate you have active an infection with one or more enteroviruses of the coxsackievirus B or echovirus species, then Dr John Chia has found that around 25% of people will noticeably improve with a herbal treatment named oxymatrine (although Dr Chia suggests that patients with autoimmune tendencies should not take oxymatrine).1 More info: Dr Chia: Oxymatrine, Oxymatrine, Autoimmunity, ME/CFS and FM.

    Dr Chia has also used interferon therapy for ME/CFS patients with enterovirus infections; many patients went into full remission after this therapy, but unfortunately tended to relapse within around six months, so this is not a permanent cure, but perhaps an encouraging result.1 More info: Chia's Interferon Therapy.

    Parvovirus B19 infection. If your tests indicate you have high parvovirus B19 antibodies and nothing else, then intravenous immunoglobulin treatment may fully cure you.1
    Chlamydia pneumoniae infection. If you have Chlamydia pneumoniae and no other infections, then antibiotic treatment with azithromycin or rifampin may clear this bacterium, and may cure fully your ME/CFS. Chlamydia pneumoniae infection is an uncommon but treatable cause of chronic fatigue.1 More info: Cure from Chronic Fatigue Syndrome with Dr. Stratton's original protocol.
    Toxic mold. If you have been exposed to high amounts of toxic mold, ensure you prevent or minimise further exposure. If exposed in your home, carefully clean off the mold growths (wearing a face mask is advised), and reduce humidity by increasing ventilation, in order to inhibit mold regrowth. Cholestyramine can be used to help detoxify certain mold toxins (such as ochratoxin A, fumonisins and zearalenone) from the body.1 2
    Chronic organophosphate and/or pyrethroid pesticide exposure. If you have been chronically exposed to organophosphate or pyrethroid pesticides, ensure you prevent any further exposure. The amount of pesticides residues found in foodstuffs is very minimal, and not of concern.

    Note: some cases of ME/CFS may be due to a combination of the above pathogenic infections (as well as other causal factors). In which case, conceivably, it may be possible to combine the above treatments in order to tackle the various individual infections.

    Before undertaking any treatment, however, you should first become familiar with any risks of taking that treatment, and if unsure, you should run it by a good ME/CFS doctor first.

    More info: Antivirals and Antibiotics for ME/CFS.



    Adjunct Therapies for ME/CFS As well as specific pathogen-targeted therapies, there are many adjunct or additional therapies that can be helpful in chronic fatigue syndrome. These include:

    Immunomodulators. These are drugs and supplements that modulate the immune system. Many immunomodulators used in ME/CFS shift the immune response from the Th2 mode to the Th1 mode. There is evidence that ME/CFS patients are stuck in the Th2 mode, whereas they should really be in the Th1 mode; it is the Th1 mode immune response that fights viruses and intracellular bacteria.1 These Th2 to Th1 mode shifting immunomodulator drugs and supplements include: low-dose naltrexone, Imunovir, oxymatrine (probably),Nexavir (formerly Kutapressin), pine cone extract, heparin, and transfer factor.1 2

    Note that Th2 to Th1 mode shifting immunomodulators can make you feel worse for the first few months, but benefits accrue after that initial period. Note also that Dr Paul Cheney believes immunomodulators lose their effect if you do not take regular breaks from them. Regular breaks means an on/off regimen, such as for example: taking them for 5 days, stop for 2 days; and taking them for 3 weeks, stop for 1 week.

    Other immunomodulators used in ME/CFS include: artesunate (often used by Dr Cheney; it inhibits the effects of TNF-alpha 1), azithromycin (an antibiotic that lessens ME/CFS symptoms 1), etanercept (inhibits the effects of TNF-alpha), Ampligen (a powerful but very expensive immunomodulator drug that modulates interferon and RNase L).

    Low-intensity exercises like walking, tai chi and yoga help shift towards the desirable Th1 mode, whereas higher intensity exercise and longer workout durations shift towards the undesirable Th2 mode.1
    Low-dose naltrexone (LDN). A low-dose naltrexone regimen (3 to 4.5 mg daily, taken before bed) can help halt the progression of various autoimmune and neurodegenerative diseases, including multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, Sjogren's, Parkinson's, Crohn's. Many ME/CFS and fibromyalgia patients find LDN beneficial.1 LDN acts as an immunomodulator that stimulates the desired Th1 immune response, and LDN is believed to increase natural killer cell function (NK function is often low in ME/CFS patients). More info: LDN for ME/CFS, LDN Overview.

    Vitamin B12 injections or B12 sublingual tablets. Many ME/CFS patients find that high dose vitamin B12substantially reduces the cognitive dysfunction (brain fog) symptoms. The recommended forms of vitamin B12 are: methylcobalamin, adenosylcobalamin, and hydroxocobalamin. Injectable vitamin B12 doses are around 1000 mcg three times a week; sublingual doses are 5000 mcg taken daily. Improvements in symptoms usually appear after a few weeks of taking B12. Further reading: Rationale for using vitamin B12 in CFS, Methylation, B12, Glutathione, Chelation.
    Methylation protocol. Dr Richard van Konynenburg says that insufficient methylation is a factor behind ME/CFS, and recommends boosting methylation using supplement regimen based on the treatment program developed by Dr Amy Yasko for autism. The Health Diagnostics and Research Institute in New Jersey (email:lab@vitdiag.com) provide a test for methylation, as do the European Laboratory of Nutrients (see their "amino acids analysis"). More info: Glutathione and the Methylation Cycle, Simple Methylation Treatment Protocol for CFS.
    Very low dose tricyclic antidepressants (TCA). Low doses (10 to 25 mg daily) of tricyclic antidepressants (TCA) such as amitriptyline or imipramine can be particularly helpful for ME/CFS. TCA antidepressants not only provide a mood-boosting for ME/CFS patients, they also are known to increase energy levels (though low doses are stipulated, as higher doses are usually found too stimulating for ME/CFS patients).1 2 TCAs can reduce vitamin B2 levels, so taking vitamin B2 with TCAs is beneficial, and may improve the effects of these antidepressants.1
    Nexavir injections. The injectable drug Nexavir (formerly Kutapressin) is an antiviral, an anti-inflammatory and an immunomodulator that has demonstrated overall benefits for ME/CFS, and this drug is often employed by ME/CFS doctors, including Dr Cheney, Dr Enlander and Dr De Meirleir. Nexavir treatment protocols vary, but in one study, ME/CFS patients were given one subcutaneous 2 ml injection of Nexavir for the first 25 days of treatment; thereafter one injection every two days, for the next 50 days; and thereafter one injection three times a week for the next 105 days. This study reported a 42% remission rate in these patients at the end of this course of Nexavir treatment.1

    Dr De Meirleir reports that around 70% of his ME/CFS patients experience at least a 20 point increase on theKarnofsky scale as a consequence of taking Nexavir. Dr Enlander says that Nexavir helps about 30% of his ME/CFS patients. Nexavir is usually taken in conjunction with vitamin B12 injections.
    Other drugs and supplements. Acetyl-L-carnitine improves mental fatigue in ME/CFS.1 L-carnitine helps ME/CFS.1 Omega 3 with omega 6 fatty acids (fish oil plus evening primrose oil) improve ME/CFS symptoms.1Magnesium (either applied transdermally on the skin, or given by injection) can be of benefit in ME/CFS.1DHEA improves pain, fatigue, anxiety, memory and sexual problems in ME/CFS patients.1 NADH helps ME/CFS.1Co-enzyme Q10 may increase energy in ME/CFS.1 Undenatured whey protein may help ME/CFS by boosting intracellular glutathione.1 Malic acid taken with magnesium can increase energy in ME/CFS and reduce pain in fibromyalgia.1 2

    More info on various ME/CFS therapies:
    ME/CFS Immune System Treatments at Phoenix Rising
    Dr Jacob Teitelbaum's 30 Top Tips for Treating CFS
    Dr MyHill Fatigue Treatments
    ME/CFS Medications Database

    2nd Round Tests: The Comorbid Diseases and Conditions of ME/CFS This second round of tests and possible causal factors focuses on a few of the comorbid diseases and conditions that are frequently found in ME/CFS patients —€” in many cases, prior to the triggering factor that precipitated the ME/CFS condition (triggering factors such as an enteroviruses, herpesviruses, mold exposure, etc).

    Comorbid conditions that are statistically more prevalent in ME/CFS or fibromyalgia patients (either prior to ME/CFS onset, or subsequent to onset) include: irritable bowel syndrome, small intestine bacterial overgrowth, interstitial cystitis and overactive bladder, chronic pelvic pain syndrome (prostatitis), endometriosis, Raynaud’s disease, multiple chemical sensitivity (increased allergies), temporomandibular joint disorder, myofascial pain syndrome, attention deficit hyperactivity disorder, eating disorders, Hashimoto’s thyroiditis, prolapsed mitral valve, and Sjogren’s syndrome (sicca syndrome), postural orthostatic tachycardia syndrome (POTS), and neurally mediated hypotension.1

    Some of these comorbid conditions likely play a causal role in the development of ME/CFS (though there is no direct proof of this; all we know at present is that these comorbid conditions are statistically more prevalent in ME/CFS patients).

    SECOND ROUND TESTS
    Causal FactorTests and Results Interpretation
    Intestinal dysbiosis

    People with ME/CFS often have bacterial or fungal overgrowth in their intestines, and may also have some pathogenic microbial species present. These conditions may be contributing to your ME/CFS symptoms.Full digestive stool analysis. A digestive stool analysis will determine whether you have bacterial or fungal overgrowth in your intestines, and will determine whether there are any pathogenic or potentially pathogenic microbes present (potentially pathogenic microbes are those that only cause problems if their populations in the gut become too large).


    More info on gut dysbiosis: Fermentation in the gut and CFS
    Leaky gut (intestinal permeability)
    Leaky gut is an intestinal dysfunction that can allow toxic contents of the small intestine to enter the bloodstream. Leaky gut arises from dysfunction of the tight junctions in the lining of the intestine.

    Fixing leaky gut improves ME/CFS, and sometimes achieves full remission from ME/CFS. 1 2Leaky gut test (lactulose/mannitol test). The lactulose/mannitol test can detect if you have a leaky gut.

    More info: Fixing Leaky Gut Helps ME/CFS.
    Irritable bowel syndrome (IBS)
    IBS symptoms may include: abdominal pain and bloating; bouts of diarrhoea and/or constipation.

    Irritable bowel syndrome is a very common comorbid condition in ME/CFS and fibromyalgia.1 2 One study found 92% of ME/CFS patients, and 77% of fibromyalgia patients had IBS in their lifetime (compared to 18% for healthy controls).1IBS is generally diagnosed by its symptoms; there are no specific tests for IBS.
    Small intestine bacterial overgrowth (SIBO)

    SIBO is a condition in which abnormally large numbers of bacteria grow in the small intestine. SIBO symptoms are very similar to those of IBS, and include nausea, bloating, vomiting, diarrhea, nutrient malabsorption (and thus malnutrition), and weight loss. SIBO is found in 84% of IBS patients, and some hypothesize that SIBO may be the cause of IBS in these cases.1

    SIBO is a common comorbid condition in ME/CFS and fibromyalgia.1Hydrogen breath test. SIBO can be detected using a hydrogen breath test, which involves drinking some lactulose sugar, and measuring the hydrogen or methane gas produced by bacteria in the small intestine as they metabolize this sugar. (These gases enter the bloodstream and are expelled by the lungs, where they are detected in the breath).

    D-xylose test. Malabsorption due to SIBO can be detected by the D-xylose test, which involves drinking D-xylose, and measuring levels in the urine and blood; if there is no D-xylose is found in the urine and blood, it suggests that the small bowel is not absorbing properly.

    More info: Testing for SIBO, Labs that offer hydrogen breath tests.
    Interstitial cystitis (bladder pain syndrome) and overactive bladder
    These two conditions involve an excessive urgency, and increase frequency, to urinate. Bladder pain is involved in interstitial cystitis.1Interstitial cystitis and overactive bladder are comorbid conditions in fibromyalgia and ME/CFS.1 2 3 Research on cats with interstitial cystitis shows that they may have mild primary adrenal insufficiency.1Interstitial cystitis (IC) cannot be diagnosed with a simple test. IC is initially diagnosed by exclusion, by ruling out other conditions with similar symptoms, such as infection, bladder stones, bladder cancer, kidney disease, multiple sclerosis, endometriosis, and sexually transmitted diseases. To confirm the initial diagnosis of IC, a fiber-optic tube and camera (cystoscope) is inserted through the urethra and into the bladder (under general anesthetic), to examine the bladder lining. A common sign of IC is numerous red pinpoint spots of blood (glomerulations) on the bladder wall lining.

    More info on testing for IC:Diagnosing and treating interstitial cystitis - Harvard Health Publications

    Overactive bladder is also initially diagnosed by exclusion, by ruling out other conditions with similar symptoms, such as infection. The diagnosis is confirmed by a procedure called flow cystometry, which involves the insertion of a catheter into the urethra in order to measure the fluid pressure pulses generated by bladder contractions.
    Allergies or food intolerances
    Allergies and/or food intolerances are commonly found in ME/CFS.1 2 Allergies or food intolerances, especially to gluten or dairy products, may exacerbate ME/CFS symptoms.

    Postural orthostatic tachycardia syndromeThere is a high prevalence postural orthostatic tachycardia syndrome (POTS) in ME/CFS.1 The symptoms of POTS include: postural tachycardia (increased heart rate on standing), headache, abdominal discomfort, dizziness, feeling faint, nausea, fatigue, lightheadedness, sweating, tremor, anxiety, palpitations, exercise intolerance.

    Note that as well as being a common condition in ME/CFS patients, POTS can also occur on its own without ME/CFS, and in these cases, POTS can be misdiagnosed as ME/CFS, since its symptoms are similar to those of ME/CFS. Prof Julia Newton believes that a third of all ME/CFS diagnoses could be wrong, because the patient may in fact only have POTS rather than ME/CFS.1 POTS is a treatable condition, so everyone with ME/CFS should investigate whether they have POTS.
    POTS is diagnosed using the tilt table test. However, an adequate home diagnosis of POTS can be achieved by measuring any increase in heart rate that occurs after standing up from a relaxed lying down position. To perform this test, you need to lie down and relax for 10 minutes, and at the end of this 10 minute period, measure you heart rate. Then stand up, and after two minutes standing, measure you heart rate again. After 10 minutes standing, measure your heart rate a third time. If your heart rate measurements taken on standing are 30 beats per minute or more faster than your heart rate while lying down, then you have POTS. Those aged 12-19 years must have an increase of at least 40 beats per minute in order to be diagnosed with POTS.


    Further info on POTS:

    Orthostatic Intolerance in CFS II, dinet.org, www.potsuk.org, POTSgrrl

    Orthostatic hypotension (OH), and
    Neurally mediated hypotension (NMH)

    OH and NMH are conditions in which your blood pressure drops on standing. In OH the pressure drop is immediate; in NMH the drop occurs after a long period of time standing, or also sometimes after having an unpleasant or upsetting experience.

    Symptoms of OH or NMH include: dizziness or light-headedness, feeling that you are going to faint, blurred vision, confusion, weakness, fatigue, nausea. These symptoms appear within a few seconds or minutes of standing up after you've been sitting or lying down, and will disappear if you you sit or lie down for a few minutes.1

    Patients with ME/CFS have a high prevalence of neurally mediated hypotension (NMH),1 which is due to a dysfunction of the autonomic nervous system. In some cases ME/CFS patients can experience almost complete resolution of their ME/CFS symptoms once their NMH is treated.1
    Orthostatic hypotension is diagnosed when, on standing from a sitting or lying position, there is a fall in systolic blood pressure of 20 mm Hg or more, and/or a fall in diastolic blood pressure of 10 mm Hg or more.1 These blood pressure measurements can be made with an ordinary home blood pressure meter. Note that a blood pressure reading is expressed as systolic/ diastolic, for example: 120 / 80.




    2nd Round Treatments
    In the light of the results of the second round of tests:

    Intestinal dysbiosis. If your digestive stool analysis test indicates bacterial overgrowth and/or the substantial presence of potentially pathogenic gut bacteria such as Aeromonas, Bacillus cereus, Campylobacter jejuni, Citrobacter, Clostridium difficile, pathogenic strains of Escherichia coli, Klebsiella, Morganella morganii, Proteus, Pseudomonas, Salmonella, Shigella, Staphylococcus aureus, Vibrio and Yersinia, then a course of antibiotics, and/or probiotics may help reduce these bacterial populations. Note that some people ME/CFS, typically those who have had this disease for a decade or more, may find their gut is too sensitive to take probiotics.
    Irritable bowel syndrome. If you have been diagnosed with irritable bowel syndrome (IBS), note that IBS can be caused by the intestinal protozoan parasites Giardia lamblia, Blastocystis hominis and Dientamoeba fragilis, all of which are treatable. There is also evidence of bacterial infection in IBS (in that the antibiotic rifaximin can put IBS into remission for weeks).

    For Giardia lamblia, a single dose of antiprotozoal drug tinidazole is an effective treatment.1 For Blastocystis hominis and Dientamoeba fragilis treatment: see the triple drug cocktail (comprising secnidazole, diloxanide furoate and bactrim DS) at the Badbugs website. A two week course of rifaximin, a unique antibiotic which is not absorbed in the intestines (and so remains in the bowels), improves IBS symptoms for three months.1 Fecal transplant (bacteriotherapy) may be worth considering: it has a 58% response rate for treating ME/CFS patients with IBS.1
    Small intestine bacterial overgrowth. If you have been diagnosed with small intestine bacterial overgrowth (SIBO), there are a number of treatment options, including: the antibiotics rifaximin, neomycin andmetronidazole; an elemental diet (to starve the bacteria); and dietary treatments that reduce food sources for the bacteria. See: Treatments Strategy for SIBO. Once the the bacterial overgrowth in the small intestine is brought under control by theses treatments, it is then necessary to adopt a prevention strategy(such as an ongoing dietary treatment) to stop SIBO from reappearing. Without adopting a prevention strategy, recurrence of SIBO is common.
    Leaky gut syndrome. If you find you have a leaky gut (intestinal hyperpermeability), this means that the potent endotoxins such as lipopolysaccharide (LPS) made by bacteria in your gut can escape into your bloodstream. LPS leaking into the bloodstream can create significant system-wide inflammation. LPS also reduces the antiviral Th1 immune response, making it harder for your body to fight off viruses.1 A leaky gut diet can help resolve leaky gut problems. Fixing leaky gut in ME/CFS can lead to clinical improvement in symptoms.1 Sometimes, complete remission from ME/CFS can be obtained by normalizing a leaky gut.1
    Postural orthostatic tachycardia syndrome (POTS). If you are diagnosed with POTS, drugs for treating POTS include: beta blockers (such as propranolol), clonidine (Catepres), desmopressin (DDAVP),erythropoietin, fludrocortisone (Florinef), ivabradine, labetalol, methyldopa, pyridostigmine (Mestinon),ibuprofen, intravenous saline, SSRI drugs, bupropion (Wellbutrin), vasoconstrictors (such asergotamine, midodrine, octreotide, ephedrine, pseudoephedrine, yohimbine, theophylline andritalin). Non-pharmaceutical approaches to treating POTS include: increasing salt or sodium intake (different doctors have recommended anything between 3 and 15 grams of salt daily), drinking more water (up to 2 liters a day), licorice root. More info on POTS treatments: POTS - What Helps
    Neurally mediated hypotension (NMH). If you are diagnosed with NMH, it can be treated by: increased saltintake, increased water intake (2 liters each day), vasoconstrictors (see POTS section above), beta blockers, fludrocortisone (Florinef), licorice root.

    3rd Round Tests: Less Common Microbial Infections in ME/CFS
    This third round of tests focuses on rarer microbial causes and contributory factors of ME/CFS.

    THIRD ROUND TESTS
    Causal FactorTests and Results Interpretation
    Giardia lamblia

    Giardia lamblia is a protozoan parasite that colonizes and replicates in the small intestine, causing giardiasis. Prior infection with Giardia lamblia predisposes to acquiring ME/CFS.1 2 3Giardia lamblia antigen test.

    Toxoplasma gondii
    This intracellular protozoan parasite, which can be caught from undercooked meat and cat feces, can cause toxoplasmosis, a mild condition that usually clears up on its own. However, Toxoplasma gondii can sometimes cause or contribute to ME/CFS. Toxoplasma gondii does not spread from person to person.

    The prevalence of Toxoplasma gondii in humans varies from country to country. It is found in around 11% of people the US, 22% in the UK, and in around 88% in France.Toxoplasma gondii antibodies.
    Mycoplasma species bacteria
    60% of ME/CFS patients are found to have blood infections with one or more of the following: Mycoplasma pneumoniae, Mycoplasma fermentans, Mycoplasma hominis and Mycoplasma penetrans. By contrast, such infections are detected in the blood of only 10% of healthy adults). ME/CFS patients infected with more than one mycoplasmal species generally had a longer history of illness, suggesting that they may have contracted additional mycoplasmal infections with time.1 2

    It has been speculated that Mycoplasma species may contribute to ME/CFS symptoms.Mycoplasma pneumoniae IgM and IgG antibodies. Dr A Martin Lerner only considers a ME/CFS patient to have a persistent Mycoplasma pneumoniae infection unless the titer is 1:600 or more (Lerner uses LabCorp for testing).1

    Mycoplasma PCR.
    Coxiella burnetii
    This rare bacterium causes a disease named Q fever, which has ME/CFS-like symptoms. Direct, person-to-person infection occurs rarely, if ever. It can be treated with antibiotics. The incubation period of Coxiella burnetii 2 to 3 weeks. 1 2Coxiella burnetii antibodies.
    Brucella
    Brucella bacteria can cause ME/CFS-like symptoms. This bacterium can be treated with antibiotics. Brucella’s incubation period is 1 to 3 weeks.Brucella antibodies.
    HTLV I and II
    If living in an endemic area, like Florida, infection with the HTLV virus is a remote possibility to explain a ME/CFS-like condition, though the symptoms of this virus take decades to appear (it has a very long incubation period).HTLV I and II antibodies.
    Ross River virus
    This mosquito-borne virus is only found in parts of Australia (and some other countries). This virus has been associated with ME/CFS, though most infections of Ross River virus do not produce clinical symptoms and go unnoticed.Ross River virus antibodies.
    Herpes simplex virus 1 & 2 (HSV)
    HSV 1 is found in 58% and HSV 2 is found in 16% of the adult population. It has been suggested that HSV 1 & 2 may play a role in ME/CFS.1HSV 1 & 2 antibodies. A blood test showing a HSV IgG antibody titer of 1:?? or more suggests an active infection.
    Varicella zoster virus (VZV)
    VZV is the virus which causes chickenpox. Having VZV has been linked to ME/CFS.1 It has been hypothesized that some cases of ME/CFS may be caused by the reactivation of VZV in peripheral nerve ganglia.1VZV antibodies. A blood test showing a VZV IgG antibody titer of 1:?? or more suggests an active infection.





    3rd Round Treatments
    In the light of the results of the third round of tests:


    Giardia lamblia infection. If you tested positive for an Giardia lamblia infection, then either a week course ofmetronidazole, or a single dose of tinidazole or ornidazole is curative in 90% of cases.1
    Mycoplasma infection. If you have a Mycoplasma infection, macrolide and tetracycline classes of antibiotics (such as azithromycin and doxycycline) are effective treatments. For healthy people, two or three weeks treatment is required; longer treatment is usually needed in chronic illness like ME/CFS.1

    Dr A Martin Lerner treats Mycoplasma pneumoniae infection in his ME/CFS patients with intravenous doxycycline 150 mg for six weeks, followed by oral doxycycline 100 to 150 mg twice daily or moxifloxacin400 mg once daily for three months.1
    Varicella zoster virus infection. If you have an active infection with varicella zoster virus, then treatment with one of the antiviral drugs acyclovir, valacyclovir or famciclovir is beneficial.1
    Herpes simplex virus infection. If you have an active infection with herpes simplex virus I or II, then treatment with one of the antiviral drugs acyclovir, valacyclovir or famciclovir is beneficial.1 The supplementL-lysine (1000 mg twice daily) is also beneficial.1 2

    4th Round Tests: Rarer Causes and Contributory Factors of ME/CFS
    This fourth set includes rarer causes/contributory factors of ME/CFS.

    FOURTH ROUND TESTS
    Causal FactorTests and Results Interpretation
    Jaw bone infection

    Cases of ME/CFS have occasionally been caused by bone infections (osteomyelitis) inside the jaw bone. Such infections can develop inside jaw bone cavitations (the hollow pockets in the jaw bone left after a tooth extraction).

    Further info:
    My recovery from CFS due to osteonecrosis of the jaw
    My recovery story
    I think I put the puzzle together
    Jaw bone infections can be very hard to detect, as they often cause only very minimal local symptoms. Yet a local infection in the jaw bone can cause symptoms identical to ME/CFS.

    A simple test for jaw bone infection is applying pressure to jaw bone with a finger; if any area feels painful, this indicates a possible bone infection.

    Jaw bone infections will usually not show up on X-rays. However an MRI can detect jaw bone infections. Ultrasound and thermal imaging cameras can also be used to help detect a jaw bone infection. A handheld device called the Cavitat scanner can detect infections hidden within the jaw bone.

    Jaw bone infections come under the category of focal infections, which are defined as infections localized in a small region of the body. Focal infections within the tonsils may also lead to fatigue symptoms.

    Dr Graeme Munro-Hall and Dr Lilian Munro-Hall are UK dentists that specialize in testing for and treating jaw bone infections.
    Sinusitis (sinus infection)
    Sinusitis can cause chronic fatigue, and so conceivably sinus infections may worsen ME/CFS.1

    Patients suffering chronic fatigue (but not proper ME/CFS) due to obstructive sinusitis have reported significant improvements in fatigue after undergoing sinus surgery. The improvements are likely to derive from the easing of sinus inflammation after surgery.

    Further info:
    Sinus surgery can improve chronic fatigueSinusitis is usually diagnosed from its symptoms (blocked nose or runny nose, and facial pain).
    Lymph fluid obstruction/stagnation
    Some patients with ME/CFS have improved, and some have even been cured, by massage that circulates lymph fluid. Thus lymphatic congestion and/or dysfunction in the thoracic duct which pumps the lymph fluid may be a factor in underpinning ME/CFS.

    Further info:
    Perrin TechniqueTesting for lymph flow obstruction. Raymond Perrin, a osteopath who has developed lymph massage techniques to treat ME/CFS, found that his patients have a sore and tender spot just under the third rib on their left side. The presence of this soreness indicates a lymph flow stagnation. To test this spot in yourself, press your fingers into a point around 2 cm above and to the left of your left nipple; if there is soreness or tenderness at this point, this indicates to Perrin that there is a lymph flow blockage.

    Perrin theorizes that lymph stagnation prevents proper cerebrospinal fluid drainage, thus creating a toxic build-up in the central nervous system that underpins or contributes to ME/CFS.1
    Physical trauma (eg: car accident)
    Physical trauma such as a road accident or a fall can precipitate fibromyalgia and ME/CFS, particularly if a head or neck injury is sustained (such as whiplash or concussion).

    Further info:
    Chiropractic and ME/CFSFibromyalgia and ME/CFS can appear immediately after an accident, or begin to develop over the subsequent months.

    The mechanisms that precipitate fibromyalgia and ME/CFS after a physical trauma producing anatomical damage or misalignment are not clear, but it is easy to hypothesize that causal factors may include anatomical misalignment restricting lymph flow from the head and through the neck; or anatomical misalignment pinching on the vagus nerve.1 2 Note that trauma to the spine can sometimes cause a syringomyelia to later form in the spinal cord, which may result in ME/CFS-like symptoms. Syringomyelia can be treated surgically.
    Temporomandibular joint dysfunction (jaw misalignment)
    Temporomandibular joint dysfunction (TMJD) is an inflammation and misalignment of the temporomandibular joint (the joint which connects the jaw bone to the skull). TMJD can cause symptoms similar to fibromyalgia and ME/CFS.

    More info:
    Recovery from CFS using oral orthoticsTemporomandibular joint dysfunction can be diagnosed by dental professionals.

    One theory on how jaw misalignment precipitates fibromyalgia-like symptoms relates to a compound called substance P. Substance P is normally raised in fibromyalgia patients (but not in ME/CFS patients) and some believe it may play causal role in fibromyalgia. Now, higher levels of substance P are also found in TMJD patients. Substance P is released into the cerebrospinal fluid when the trigeminal nerve (which runs through the lower jaw) is stimulated. So substance P, originating from TMJD, offers a possible explanation of how TMJD might trigger fibromyalgia-like symptoms, and may explain how treating TMJD can lead to remission from fibromyalgia.
    Silicone breast implant leakage
    Silicone used for breast and other implants, as well as silicone injections, can in rare cases cause an ME/CFS like illness, as well as autoimmune conditions, if it leaks into the body. Silicone is known to affect the immune system (silicone is used as an immune stimulating adjuvant in vaccines for this reason).

    More info on silicone illness here.Silicone breast implant leakage symptoms can include: pain, swelling, redness and sometimes tingling of the breasts.
    Vaccination
    In some cases, ME/CFS is triggered by vaccination. Vaccination-triggered ME/CFS is generally the rapid onset kind, with the symptoms of ME/CFS appearing almost immediately after the vaccination. Dr John Chia has found that around 1.5% of his ME/CFS patients appeared to have their disease triggered by vaccination.1 Dr Charles Shepherd of the ME Association UK says that the vaccines most linked to triggering ME/CFS are tetanus, typhoid, influenza, and hepatitis B; more rarely he says hepatitis A (using immunoglobulin), polio, or rubella vaccine can trigger ME/CFS.1

    In 2013 the Federal US Court ruled that hepatitis B vaccine caused ME/CFS in one patient, and awarded the patient $1.1 million.1
    Ciguatoxin Ciguatoxin exposure causes ciguatera, which can later sometimes lead to chronic fatigue syndrome.1 2 Ciguatoxin is found in some predatory fish which eat smaller fish that feed on ciguatoxin-producing algae. This toxin cannot be destroyed by cooking. Ciguatoxin poisoning from fish occurs in tropical and subtropical areas, particularly in the Pacific Ocean, the Indian Ocean, and the Caribbean. All reef fish are capable of causing ciguatera poisoning, but in particular, the species: barracuda, grouper, red snapper, moray eel, amberjack, parrotfish, hogfish, sturgeonfish, kingfish, coral trout, and sea bass present a risk.
    Ionizing radiation
    This can cause of ME/CFS-like symptoms (post-radiation syndrome).1
    Radiotherapy or chemotherapy
    undertaken as a cancer treatment can lead to ME/CFS soon after.1
    Food poisoning
    Very occasionally, cases of food poisoning can precipitate ME/CFS.
    Meningitis
    An episode of meningitis can afterwards lead to ME/CFS.1
    Tung oil
    Exposure to tung oil, a wood preservative extracted from the seed of the tung tree (Vernicia fordii), has been proposed as a cause for ME/CFS.1
    Corticosteroids
    If corticosteroids (immunosuppressants) are given during the acute phase of a significant respiratory infection, this has been found to sometimes lead to ME/CFS. ME/CFS specialist Dr John Chia discovered this during while taking a detailed medical history of his ME/CFS patients.



    4th Round Treatments
    In the light of the results of the fourth round of tests:

    Jaw bone infection. If you suspect you may have an focal infection within the jaw bone, you need seek help from a knowledgeable dentist, but these are hard to find. More info here. Dr Graeme Munro-Hall and Dr Lilian Munro-Hall are UK dentists that specialize in testing for and treating jaw bone infections.
    Lymph flow obstruction. If you think you may have a lymph flow obstruction, you may wish to try the Perrin Technique, which improves lymphatic and cerebrospinal fluid drainage using osteopathic massage and manipulation. Patients also follow a massage and exercise routine at home, involving spinal twists (Perrin twists) which manually activate the thoracic duct (the body's main pump for lymph fluid).
    Physical trauma. If you think your ME/CFS or fibromyalgia may be due to a physical trauma, such as a car accident that involved a head or neck injury, physical therapy spinal manipulation such as cranial osteopathy or chiropractic may perhaps yield benefits.
    Temporomandibular joint dysfunction. If you have fibromyalgia-like symptoms, and you have been diagnosed with temporomandibular joint dysfunction (jaw misalignment), consider treating this, because it may help improve your fibromyalgia-like symptoms too.
    Testing Laboratories
    Testing laboratories (pathology labs) where the tests recommended in this document can be obtained are listed below.

    TESTING LABORATORIES
    USAUK / EuropeCanada

    ARUP Laboratories
    Viracor
    Focus Diagnostics (owned by Quest)
    Quest Diagnostics
    Medical Diagnostic Laboratories
    Genova Diagnostics
    LabCorp
    Life Extension Tests (via LabCorp)
    NeuroScience, Inc
    Great Plains Laboratory
    Metametrix Clinical Laboratory
    Advanced Laboratory Services
    DirectLabs
    IGeneX
    Genova Diagnostics
    Great Plains Laboratory
    Biolab Medical Unit
    Neuro Lab
    Nutrition Geeks
    The Doctors Laboratory (TDL)
    TDL Manchester
    YorkTest Laboratories
    MELISA Diagnostics Ltd
    Medichecks (sends samples to TDL)
    Red Labs (Belgium)
    UZ Brussels (Belgium)
    InfectoLab (Germany)
    European Laboratory of Nutrients (Netherlands)

    AustraliaNew ZealandIreland
    Diagnostic Insight
    Centre for Digestive Diseases

    MedLab Pathology



    ME/CFS Doctors and Clinics
    Some of the world's leading ME/CFS doctors and clinics are listed in the table below. More info on ME/CFS doctors and clinics here: Co-Cure ME/CFS & Fibromyalgia Good Doctor List, Phoenix Rising Forum ME/CFS Doctors, Chronic Fatigue Syndrome Doctors and Clinics.

    ME/CFS DOCTORS AND CLINICS
    USA
    Dr John Chia (Torrance, California) Article on Dr Chia

    Dr Chia is an infectious disease specialist with special interest in enteroviruses (which include coxsackievirus B and echoviruses), and is the leading researcher in enterovirus-associated ME/CFS. He uses the immunomodulator oxymatrine to treat ME/CFS patients.

    Dr A Martin Lerner (Oakland, Michigan) Article on Dr Lerner
    Dr Lerner is a leading researcher in ME/CFS associated with herpesvirus and uses antivirals (Valtrex and Valcyte) to treat these infections. He also has particular interest in the cardiac problems and cardiac insufficiency often found in ME/CFS.

    Professor Jose Montoya (Stanford University, California) Article on Prof Montoya
    Dr Montoya is a leading researcher in ME/CFS associated with herpesvirus such as HHV-6, EBV, cytomegalovirus, and uses the powerful antiviral drug Valcyte to treat these herpesviruses where appropriate.

    Dr Daniel Peterson (Sierra Internal Medicine, Nevada) Article on Dr Peterson
    Dr Peterson is a very experienced ME/CFS doctor and researcher, and has a special interest in natural killer cell functioning in ME/CFS. Dr. Peterson uses the antiviral Vistide (cidofovir) in patients with HHV6 and cytomegalovirus infections.

    Dr Paul Cheney (Asheville, North Carolina) Article on Dr Cheney
    Dr Cheney is an innovative doctor and researcher using leading edge medicine to treat ME/CFS.

    Dr Nancy Klimas (Miami, Florida) Article on Dr Klimas
    Dr Klimas is a ME/CFS doctor and researcher who runs a ME/CFS clinic. She has significant experience in using immune modulators for treating ME/CFS.

    Dr Charles W. Lapp (Charlotte, North Carolina) Article on Dr Lapp
    Dr Lapp runs clinical trials for drugs for ME/CFS and fibromyalgia, and has been using the immunomodulator drug Ampligen for ME/CFS.

    Dr Derek Enlander (New York)
    Dr Derek Enlander uses immune modulators for treating ME/CFS, and the antiviral drug Valcyte.

    Dr Garth Nicolson (Huntington Beach, California)
    Dr Nicolson works with ME/CFS, autoimmune diseases, Gulf War illness, and the infectious causes of autism and neurodegenerative diseases.

    Dr Daniel Dantini (Ormond Beach, Florida) Article on Dr Dantini
    Dr Dantini uses the antiviral drugs Valtrex (valacyclovir) and Famvir (famciclovir) for herpesviruses in his treatment of ME/CFS where appropriate.

    Dr Andreas M. Kogelnik (Mountain View, California)
    Dr Andreas M. Kogelnik is an infectious disease doctor, and an ME/CFS specialist and researcher.

    Dr Lucinda Bateman (Salt Lake City, Utah) Article on Dr Bateman
    Dr Lucinda Bateman is an internist specializing in the treatment of ME/CFS.
    UK / Europe
    Dr Sarah Myhill (Powys, Wales, UK)

    Dr Myhill is GP with significant experience of CFS, and has a website from which various lab tests can be ordered and interpreted by Dr Myhill.

    Breakspear Medical Group (Hertfordshire, UK)
    Breakspear focuses on allergy and environmental illness. For ME/CFS treatment they use antivirals, gammaglobulins for parvovirus, and test and treat rickettsial and bacterial co-infections.

    Dr Kenny De Meirleir / Red Labs (Belgium)
    Dr Kenny De Meirleir is a leading ME/CFS doctor and researcher who runs a ME/CFS clinic in Brussels. Dr De Meirleir has a particular interest in the intestinal dysfunction and intestinal dysbiosis of ME/CFS.
    Canada
    Dr Byron Hyde (Ottawa) Article on Dr Hyde

    Dr Hyde uses SPECT scans to demonstrate dysfunction in the brain.
    Australia
    Australian ME/CFS Good Doctor List
    Sourcing Pharmaceutical Drugs
    Good ME/CFS doctors who provide the appropriate drugs for ME/CFS patients are few and far between, and the average primary care doctor is often reluctant to prescribe drugs for off-label or experimental use in ME/CFS. Thus it may be necessary to buy the drugs you need directly from a reliable online pharmacy.

    The law in most counties allows 3 months worth of prescription drugs for personal use to be imported from abroad (though these drugs of course cannot be controlled substances). Courtesy of this law, it is possible to easily and legally obtain drugs from online overseas pharmacies, usually without needing to provide a prescription. There are many online overseas pharmacies to choose from, but it is important to find a good one that is trustworthy and reliable. The information detailed here may help locate a reliable overseas pharmacy.



    Sourcing Cheap Supplements
    ME/CFS patients often take a range of supplements to help combat the myriad symptoms of this problematic disease. To save on costs, note that vitamin, herbal and amino acid supplements can be obtained at substantial discounts —€” around 80% to 90% less than the regular price —€” if you buy these supplements in bulk powder form, rather than tablet or capsule form. Supplements in powder form can taken by swallowing the powder with a little water. It may be an idea to buy a digital weighing scales to accurately measure the power dosage (digital scales can be obtained for as little as $10).

    Some bulk powder supplement suppliers include:

    BULK POWDER SUPPLEMENT SUPPLIERS
    USAUKAustralia
    purebulk.com

    www.bulksupplements.com
    www.nutraplanet.com
    www.myprotein.com
    www.bulkpowders.co.uk
    bulkpowders.com.au

    https://sites.google.com/site/cfstestingandtreatmentroadmap/

    @SOC
     
  6. SOC

    SOC Senior Member

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    @heapsreal, Roadmap. Roadmap. That's it! Now if I can only keep that in my head. :bang-head: Thanks... again.

    @JoanDublin, I'd be considering HHV6 simply because your son seems to have a lot of neurological symptoms and HHV6, especially HHV6a, can establish neurological infections. Also, you said he had EBV (HHV4) and chicken pox (HHV3) which suggests he might have a problem controlling herpesviruses. The problem is getting doctors to interpret the test results appropriately for ME patients. You can read more about HHV6, including testing and treatment, at the HHV6 Foundation.
     
    JoanDublin likes this.
  7. JoanDublin

    JoanDublin Senior Member

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    Thanks @heapsreal and @SOC
    I will plough through this over the weekend and see what I can condense for the doc. Thanks a million
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    just start with ruling out things and then the round 1 tests. Probably some things he has already been tested for?
     
    JoanDublin likes this.
  9. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @heapsreal That is the most incredible list/roadmap I have seen yet and I am printing it out myself right now. I really want to make sure that I get the best tests for EBV, HHV-6 and all the other viruses at my appt next week and now have even more focused questions to ask. You are the best!

    @JoanDublin I am praying for your son and hope that you can get the doctors to listen and run some tests. I forgot if you already mentioned this, but is your son well enough to travel to see a doctor outside of Ireland if needed?
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Don't give me credit but I do think it's a great road map put together by hip with some info from a few of us here.
     
  11. WillowJ

    WillowJ Senior Member

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    Is there a thread or someplace to discuss the roadmap document?
     
  12. JoanDublin

    JoanDublin Senior Member

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    @Gingergrrl43

    Yes Ginger, he would be able for travel abroad as long as it was planned alright and he had enough resting time, etc.. Im hoping to take him to see KDM in Belgium in the not too distant future. I have contacted them several weeks ago and am still waiting on a response. I'm trying to do all I can here in Ireland first before taking that step though
     
  13. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @WillowJ I read the entire roadmap today word for word and would love a thread to discuss it (which there may be from years past, I am not sure?) Two things in it that were very hopeful to me (although I am trying to stay realistic) are that in some people with high EBV titers and leaky gut (both are my case) were able to get substantial recovery when those two issues were under control. I know different parts of the roadmap pertain to each individual but those two things grabbed my attention. @heapsreal said it was created by @Hip so I wanted to really thank you @Hip for putting all that info together, it is incredible!
     
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  14. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @JoanDublin That is a great idea taking him to KDM and I am hoping they get back to you. They never got back to me when I tried to see KDM in Reno but after about a week I gave up and am seeing another specialist next week instead. I know @Sushi has had good luck reaching them in Belgium and may be able to give you some pointers.
     
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  15. justy

    justy Senior Member

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    @JoanDublin I suggest you get him to KDM as soon as possible and he will order all the testing necessary - apart from the terrible bowel issues I noticed your son and I had similar infections and viruses preceeding a severe relapse into ill health.

    KDM has just diagnosed me with Lyme. Bartonella and Chlamydia pneumoniae.

    I found that the best way to get in touch with the clinic is e mail followed up a few days later with a phone call - this has always worked for me. If you need any other info on how to prepare or where to stay etc there are plenty of us here who have experience of the clinic who you can ask questions of.
     
  16. Hip

    Hip Senior Member

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    Glad you find the CFS Testing and Treatment Roadmap useful, Gingergrrl43. The idea of the roadmap is to provide newcomers to ME/CFS with a quick overview of what treatments might help, and what tests are appropriate for each of those treatments. Some sections of the roadmap are not fully completed; when I have the energy I sometimes add new info to it. There are probably some treatments I may have missed out. I benefitted from writing this roadmap in that I learnt quite a bit as I was compiling it.

    This overview might help a newcomer to ME/CFS find their feet regarding the various treatments available; though for each treatment mentioned in the roadmap, you would have find the appropriate threads in this forum or elsewhere online for more in-depth details. It's in those individual forum threads on particular treatments that you might want to discuss each treatment further. For example, if you are interested in the leaky gut treatment, there is a thread on this here.
     
    Last edited: Jul 13, 2014
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Fantastic bit of work Hip. :thumbsup:
     
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  18. JoanDublin

    JoanDublin Senior Member

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    Thanks Justy,

    Yes I've sent an email on the 15th June and I followed it up with a phone call a few days later and they said they would be in touch but so far I haven't heard anything. I sent a reminder email on the 2nd July and got no reply to that either :(
     
  19. justy

    justy Senior Member

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    I would call them again and say you are trying to make an appointment - I always think it is best to call early in the week - Monday or Tuesday. Have they sent you the e mail information yet about testing and charges etc? I think some people can seem to have trouble getting appointments initially, but once in the system I think it works ok. The clinic is VERY busy and has only a few staff - I know its no excuse, especially when people are desperate, but its all I have...I would call them again today and say you have e mailed and you want to make an appointment today.
     
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  20. justy

    justy Senior Member

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    Any luck yet Joan?
     

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