25 Year old UK guy, low testosterone / adrenal dysfunction?
- 01-04-2013, 10:53 AM
I'm just not sure that high NE is my problem to be honest; quite the opposite. Need to get in contact with you via Skype - hope you have enjoyed the Xmas break.
My symptoms undoubtedly fit more with low noepinepherine - low body temperauture with normal thyroid / adrenals, low mood / motivation, poor concentration, poor memory, no libido, lowish blood pressure etc
High NE would surely have me anxious, high blood pressure, sweating, palpitations etc - I have none of theose.
NutrEval urinary metabolites also agree with theory of low NE.
Looking at the methylation diagrams you can see how lead would interfere with neurotransmitter production, but now that I've looked at heavy metals across blood, urine and hair with no problems - it would seem to rule that out.
Having been at 1000mcg of methyl B12 and 1000mcg of methylfolate for 8 weeks now I'm wondering if I could tolerate more of either / both and perhaps wouldn't respond until they were higher.
- 01-04-2013, 08:06 PM
Chronic Fatigue Syndrome
A Roadmap For Testing And Treatment
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.
These guidelines were devised primarily by individuals with ME/CFS, mainly from the Phoenix Rising forum. (The forum thread in which this roadmap is discussed is here).
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, both physical and mental, 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/working memory deficits, problems recalling words or names, disorientation, loss of focus and awareness.
Mood disorders which may include: emotional lability, depression, irritability, anxiety, panic attacks.
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/weakness, tingling sensations. Enlarged/painful lymph nodes in neck/armpits. Joint pain moving from one joint to another without swelling or redness.
For the formal rules of ME/CFS diagnosis, see the CDC's ME/CFS Criteria or the Canadian Consensus ME/CFS Definition.
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
Tests and Results Interpretation
Lyme disease (Lyme borreliosis)
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:
Better Health Guy - Lyme Testing
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)
Most people with SLE will have a positive antinuclear 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.
Hepatitis B and C
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
- 01-04-2013, 08:07 PM
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. Tests that provide insight into your circumstances of health, but having done so, do not lead to corresponding treatments, are deferred to later.
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 determined to an extent by the amount of IgG antibodies your body produces in response to that microbe. High levels of IgG antibodies suggests an active chronic infection.
Antibody testing. Antibody testing is a common way of measuring the activity of a microbial infection in the body. An overview of antibody testing is as follows. The immune system manufactures antibodies specific for each microbe you catch. Antibodies are made to target and bind to a particular microbe, facilitating its destruction. At the onset of a microbial infection (such as when you first catch a cold), the immune system initially responds by making IgM type antibodies to target the microbe. As this acute infection is slowly brought under control (when your cold is finally going), IgM has done its job, and the levels of IgM gradually go down to zero. At the same time, the immune system now starts making IgG type antibodies, which are designed to take over the job of IgM. IgG antibodies remain in the body for your whole life, trying to prevent the same infection from flaring up again.
In an antibody blood test, it is therefore clear that finding high levels of IgM and no IgG indicates you have an infection in its initial acute stage. Conversely, finding IgG, but little or no IgM, indicates you have a past infection (which is where a microbial infection from an earlier point in your life has now been brought under control by the immune system, and so this infection is in a dormant state). However, finding slightly higher levels of IgG and little or no IgM indicates the infection has not been fully brought under control, and that you have an active chronic ongoing infection. One or more active chronic ongoing infections are often found in ME/CFS patients.
Antibody levels are measured by what is known as a titer. The higher the titer, the more antibodies you have, and the higher the microbial activity in your body.
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. (However, most drugs and herbs have multiple actions, so for example if an antibacterial drug helps, it may be for reasons other than its antibacterial properties).
1st Round Tests
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
Tests and Results Interpretation
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 2
Epstein-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 CD8.1
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.1
HHV-6 antibodies. A blood test showing an HHV-6 IgG antibody titer of 1:320 or 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 Foundation: Viral Testing
HHV-6 Foundation: Research Papers
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
Coxsackievirus B and echovirus
There are six coxsackievirus B types and thirty-two different echoviruses. All are part of the enterovirus genus. Coxsackievirus B is found in 55% of adults, according to a study in Scotland.1
If you have an active coxsackievirus B or echovirus infection, this may be contributing to or causing your ME/CFS symptoms.1 2 3 4
Part of the difficulty in treating a chronic enterovirus infection is that this virus can exist in two distinct forms in the body: the regular enterovirus, and the non-cytopathic enterovirus. The infection begins with a regular enterovirus, but then some regular enteroviruses convert into non-cytopathic enteroviruses within the body. Unlike regular enteroviruses, these non-cytopathic enteroviruses reside within human cells, and so are hard to detect, but may be contributing to or causing your ME/CFS symptoms.1 2 3
Coxsackievirus B and echovirus antibodies. Only one testing lab has an enterovirus antibody test sufficiently sensitive to detect the low-level "smoldering" chronic enterovirus infections of ME/CFS: ARUP Lab, in Utah. These test are: Coxsackievirus B Antibodies, Echovirus antibodies. Titers of 1:320 and higher 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-cytopathic enterovirus testing. There are no commercially available tests for non-cytopathic enteroviruses, which reside within human cells.
Enterovirus Foundation: Testing for chronic enteroviral infections
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
Parvovirus B19 antibodies. A blood test showing a parvovirus IgG antibody titer of 1:?? or more suggests an active infection.
Chlamydia pneumoniae is an intracellular bacterium (one that lives inside human cells) which is found in a latent state in 74% of the adult population, according to a study conducted in Israel. About 10% of this population had a persistent active infection with this bacterium.1
Stanford University: Chlamydia Pneumoniae
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.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.
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.
Further info: PAN
Sources 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
01-04-2013, 08:10 PM
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 as valacyclovir (Valtrex) can hasten the healing process.1 Nexavir (formerly Kutapressin) may have some in vitro activity against Epstein-Barr virus.1
• Herpesviruses 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
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 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 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.
• 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.
01-04-2013, 08:11 PM
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 taking them on an on/off regimen, such as for example: on for 5 days, off for 2 days; and on for 3 weeks, off 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 / sublingual tablets. Many ME/CFS patients find that high dose vitamin B12 substantially 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 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. 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 the Karnofsky 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
01-04-2013, 08:13 PM
2nd Round Tests
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 Sjögren’s syndrome (sicca syndrome).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
Tests and Results Interpretation
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 pathogenic microbes present.
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.
Leaky gut test (lactulose/mannitol test). The lactulose/mannitol test can detect if you have a leaky gut.
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).1
IBS 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.1
Hydrogen 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.1 Interstitial cystitis and overactive bladder are comorbid conditions in ﬁbromyalgia.1 2 Research on cats with interstitial cystitis shows that they may have mild primary adrenal insufficiency.1
Allergies or food intolerances
Allergy 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.
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 problematic gut bacteria, such as ..... Pseudomonas aeruginosa, Morganella morganii, Proteus mirabilis, Pseudomonas putida, Citrobacter koseri, and Klebsiella pneumoniae, 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, often 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, the antiprotozoal drug tinidazole is an effective treatment.1 For Blastocystis hominis and Dientamoeba fragilis treatment: see the triple drug cocktail 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 and metronidazole; 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
01-04-2013, 08:13 PM
3rd Round Tests
This third round of tests focuses on rarer microbial causes and contributory factors of ME/CFS.
THIRD ROUND TESTS
Tests and Results Interpretation
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
Giardia lamblia antigen test.
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
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.
Coxiella burnetii antibodies.
Brucella bacteria can cause ME/CFS-like symptoms. This bacterium can be treated with antibiotics. Brucella’s incubation period is 1 to 3 weeks.
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.1
HSV 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. VZV may be linked to ME/CFS (it has been hypothesized that some cases of ME/CFS may be caused by the reactivation of VZV in peripheral nerve ganglia).1
VZV 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 Giardia lamblia infection, then ....
• 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 moxifloxacin 400 mg once daily for three months.1
• Varicella zoster virus infection. If you have an active infection with varicella zoster virus, then the supplement L-lysine (1000 mg twice daily) may be useful.
• Herpes simplex virus infection. If you have an active infection with herpes simplex virus I or II, then the supplement L-lysine (1000 mg twice daily) may be useful.1
01-04-2013, 08:14 PM
4th Round Tests
This fourth set includes rarer causes/contributory factors of ME/CFS.
FOURTH ROUND TESTS
Tests 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).
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 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.
Sinus surgery can improve chronic fatigue
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.
Testing 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).
Chiropractic and ME/CFS
Fibromyalgia 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.
Recovery from CFS using oral orthotics
Temporomandibular 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
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. 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.
Hepatitis B vaccination
In VERY rare cases, ME/CFS is triggered by hepatitis B vaccination (and this is usually a rapid onset: that is, the symptoms of ME/CFS appearing almost immediately after the vaccination).
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.
• 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 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.
01-04-2013, 08:14 PM
ME/CFS DOCTORS AND CLINICS
Dr John Chia (Torrance, California)
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.
Dr A Martin Lerner (Oakland, Michigan)
Dr Lerner is a leading researcher in ME/CFS associated with herpesvirus and used antivirals to treat these infections. He also has particular interest in the cardiac problems and insufficiency often found in ME/CFS
Dr Jose Montoya (Stanford University, California)
Dr Montoya is a leading researcher in ME/CFS associated with herpesvirus such as HHV-6, EBV, cytomegalovirus, and uses powerful antivirals to treat these herpesviruses where appropriate.
Dr Daniel Peterson (Sierra Internal Medicine, Nevada)
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 Paul Cheney (Asheville, North Carolina)
Dr Cheney is an innovative doctor and researcher using leading edge medicine to treat ME/CFS.
Dr Nancy Klimas (Miami, Florida)
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)
Dr Lapp runs clinical trials for drugs for ME/CFS and fibromyalgia, and has been using ampligen for ME/CFS.
Dr Derek Enlander (New York)
Dr Derek Enlander uses immune modulators for treating ME/CFS.
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)
Dr Dantini uses antivirals (famciclovir and valacyclovir) for herpesviruses in his treatment of ME/CFS where appropriate.Dr.
Dr Andreas M. Kogelnik (Mountain View, California)
Dr Andreas M. Kogelnik is an infectious disease doctor, and an ME/CFS specialist and researcher.
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 ME/CFS doctor and researcher who runs a ME/CFS clinic in Brussels with a particular focus on the intestinal dysfunction and intestinal dysbiosis of this disease.
01-05-2013, 05:02 AM
Interesting what you say about sinus surgery as I have been told I may well have to have SMD, septoplasty and outfracture of the turbinates.
At this stage I don't feel I fit the criteria for CFS.
* Light - Moderate Exercise does not worsen my condition now and helps psychologically
* Cortisol levels are now at a good level (not chronically depressed)
* Alchohol improves symptoms
* Sleep cycle not pushed back
* No muscle aches pains.
I've also had pretty comprehensive testing as you'll see throughout the thread.
* Fatigue with perhaps more emphasis on metal fatigue. Poor memory, poor reasoning etc
* Low mood
* No libido
* Dry / Gritty / Photophobic right eye. Floaters also present - most pressing symptom. Very severe.
* Sinus congestion. Not too bad throughout the day but wake in the night dehydrated and inflammed sinuses at 4-5 every time. Pint of water eases symptom and get back to sleep.
01-05-2013, 05:50 AM
Posted the above links to help out with testing etc.
I have had cfs/me now for 11 yrs after 3 infections(cmv/ebv/chickenpox) within probably 6 months and i fit into a subgroup of cfs/me that respond to treating herpes infections.
My initial couple of years i could exercise quite well with relapse or crashes as i call them and then recover again and this cycle repeated itself a few times until it became more constant.
I have improved using antivirals meds, immune modulators as well as doing adrenal fatigue treatments.
It can be hard to treat these conditions as you are finding out.
I also have chronic sinusitis, my doc says that staph infections are very common causes of chronic sinusitis in cfs/me. I have been unable to cure sinusitis but doxycycline has helped alot. It can be hard sometimes to pick up that its sinusitis doing these things as many think it presents like a cold. For me sinusitis worsens sleep and i wake very early mornings with bad headaches, probably because of poor sinus drainage lying down, also get very dry eyes, and post nasal drip which is really annoying and the fatigue can drop me as bad as my cfs/me symptoms prior to antivirals. Worth looking into for sure or a trial of doxycycline for a few weeks.
Immunovor which is an immune modulator helps improve immune function and natural killer cells which could also be helpful for sinus infections.
good luck mate,
01-05-2013, 08:10 AM
01-05-2013, 11:31 AM
Being a trainer for 20 years, i have seen all.kinds of t.levels in natural.people. One report I.read.most NFL player and other athletes level are 350-500 on average. One natural freak i trained had t of 400 but.optimal gh thyroid adrenal function ..One word Bioindividuality ..People are chasing numbers and looking at T levels which in majority of.younger guys is a symptom of a deeper cause. Why I.stress look.for underlying pathology by first.looking at life styles nutrition sleep patterns and hidden daily hidden stresses before going looking into hormones chasing your tail..Common sense is.usually is where the answer is found, but.highly overlooked in.medicine.
I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
01-13-2013, 07:15 PM
01-13-2013, 07:23 PM
Toxicity and inflammation which leads to.compromise immune systems resulting in adrenal, thyroid and hormones in the first place. Hidden stressors have to be identified. So the root cause can be addressed. The key is having a detailed history of the person and just using common sense. Not saying trt doesn't have it.place. Saying further evaluations needs to.be conducted.in guys < 30-35 because it.may be masking something more health threatening.
I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
01-14-2013, 12:36 AM
01-14-2013, 01:28 AM
1. Lifestyles (sleep hygiene, stress management, ect)
Proper evaluations depends on the underlying pathology. The proper testing needs to be conducted based upon the budget one is comfortable with. Its the skill of the pracitioner which dictates the testing needed to get the proper information.
I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
01-17-2013, 10:08 AM
I'm in week 3 of my SERMs of Toremifine Citrate @ 60mg and Clomid at 25mg BID. Prior to that I did 8 shots of 1500iu of HCG spread over 2 weeks with 1mg Adex on the day of the shots. I've also been taking 3g DAA and a serving of TOCO 8 (Vit E Supplement) each day.
Just had bloods back drawn 7 days ago:
FSH 10.6 (2.0 - 14)
LH 11.4 (2.0 - 14)
Oestradiol <50 (28 - 156)
SHBG 28 nmol/l (15-47)
Testosterone 13.5 nmol/l (392 US units) (Was 14.4 back in Nov prior to trying TRT)
Prolactin 136 (86 - 324)
Progesterone 2.6 (0.95 - 3.82)
Vitamin D 169 nmol/l (>75) (Checking the web optimal is 150 - 180)
TSH 1.9 (0.2 - 5.0)
FT4 17.0 (9.0 - 24)
LDL Cholesterole 1.83 mmol/l (0 - 2.0)
HDL 1.5 No range mmol/l
Cholesterol 3.7 mmol/l (0 - 4)
Chol / HDL ratio 2.47
Albumin 44 g/l (34 - 48)
So it looks like I'm recovered back to where I was prior to the trial of Testosterone replacement which is a relief. I'll continue to run it for the remainder of the planned 4 weeks.
One good piece of news is my Vitamin D, which was 83nmol/l back in Nov 11 then 74 nmol/l when checked is April 2012 is now well into the optimal range. I have been supplementing with 5000iu for around 18 months now so can only conclude that my body is now absorbing it and fats in general more efficiently now. I think my cholesterol numbers would support this as well.
I have also tapered up to 5000mcg of B12 and 3000mcg of 5-Methlfolate; supplements to support the methylation cycle. Having felt no discernible difference I have dropped back to 1000mcg of each.
I am still off work. My GP, while supporting, cannot prescribe Wellbutrin in the UK, not even off label, so any hopes of a trial of that are out of the window. I broached the topic of a trial of an SNRI (Effexor of Cymbalta) but while willing to try in the future, he does not thinking I present as particularly depressed.
I have now got an appointment to see the ENT specialist again regarding my sinuses in February. When I last saw him he suggested I may need Septoplasty, SMD and Outfracture of the turbinates. My GP and I are both keen for me to have this done on the off chance that it improves my eyes and energy levels in general.
Symptom wise I am pretty much unchanged in terms of tiredness, visual problems, concentration and libido. Psychologically I would say I am better than where I was before Christmas. Getting out with my friends and having a few drinks for the first time in a long time has definitely helped that, but unfortunately it has not changed the rest. Still, important to keep track of the positives.
I have also been able to do some light exercise. Checking my heart rate the morning after with the orthostatic test, I am recovering fine from it. Definitely not 'overtrained' in the classic sense any more. Have lifted some light weights and also tried hot yoga (not that light!) which I enjoyed and had some interesting benefits as well. I felt immeasurably better when I had finished and for the couple of hours afterwards. On checking my body temperature it was around 98.6 whereas at most other times the highest it gets is 97.7.
This brings me back to the concept of Wilson's Temperature Syndrome:
-I've got the thyroid symptoms - dry eyes, dry brittle hair (changed from thick and full), cold extremeties, low normal serum T, no libido, brain fog and low body temp but obviously my FT3, FT4, Rt3 are ok
-I've got the perfect history - chronic dieting / overtraining with stressful period and noticeable crash
-I now know one or two professionals personally who have people who have sorted themselves through it, coming from similar backgrounds.
-I've excluded so much else and WTS is definitely a diagnosis of exclusion.
I have managed to find a UK GP who treats this now, based on Harley Street, and am hoping to get enough money together to be able to see him. I have enough Cytomel to try it myself but would be unsure and better to defer to a Dr. It would seemingly also be the first time a qualified doctor in the UK has actually had a clue what may be wrong.
It may be a longshot and I know Matrix disagrees with the use of T3 like this and I respect his opinion wholeheartedly, but I am running out of options really and don't seem to be improving currently.
If anyone has any experience of people undergoing WTS therapy I would appreciate experiences.
01-17-2013, 12:31 PM
01-17-2013, 01:44 PM
It would be interesting to see if my response to T3 was better this time, now we have resolved the CBS pathway and been on the methylation supps for a while. Hebsie who I believe you have been speaking to has intimated he has had good fortune with B12 improving his T3 use.
The Vit D level is surely good news for my VDR taq SNP as well, so hats off for the suggestion to supplement.
01-17-2013, 02:33 PM
01-20-2013, 11:49 AM
01-20-2013, 12:53 PM
01-21-2013, 01:00 PM
Should also add to the above that I've trialled Dopa Mucuna at 1600mg BID for the last 3 weeks but no tangible positive effect on libido.
I'm now a few days into starting T3 and although my temperature is a little higher it is still around 96.9 orally on waking and 96.7 underarm with the exception of the below..
However something interesting happeend over the weekend. I woke up on Saturday with the above temperatures but my appetite which has been entirely absent for the best part of a year now, no real hunger cues etc kicked into overdrive. I can only assume it was the T3 as I consumed A LOT, it was a curry night at a friends and including the day time eating I must have easily clocked up 4000 - 5000 calories without feeling full. (I only weigh 150lb and am 5' 7 so thats got to be a fair amount in excess)
I woke up Sunday morning and my basal temperature was 97.8, extremeties were warm and pink, testicles fuller and hanging lower and I had a sense of libido as well.
Weighed in this morning and despite the massive amounts of food and carbohydrate consumed I'm down a 1lb from Friday.
I've read Matt Stones work over at 180 Metabolism and Leigh Peeles Metabolism repair book but wonder if there could be something in it. I'd be loathed to put on fat for the sake of it, but I am now wondering if I can't get my temperature to increase with T3, whether it is worth trying heavily overfeeding on carbohydrate for 4 - 6 weeks to see if symptoms and temperatures improve.
01-28-2013, 01:08 PM
As an update. I've tapered up to 50mcg of T3 taken at night and am now 10 days into it. As a caveat, I appreciate this goes against the advice of Matrix.
My basal underarm temperature is still 97.1 and hasn't really budged despite the T3. Symptom wise I haven't felt any worse or better. Noteably I haven't experienced any classically low cortisol symptoms which is good so far apart from..
Again though on Saturday, similar to last weekend, I had a large amount of food and this time also had some alcohol as well. Didn't do basal temperature on the Sunday but by the afternoon it had got to 98.6 and by the evening was 99. I didn't feel hyper at all and, despite feeling hungover, felt great. Sharper mind, noticeable libido, eyes not so dry.
So is it the large calorie surplus or is it the alcohol, or a mixture of both that drives my temperature up?
Today I had a little N1 experiment.
Basal temperature - 97.1
4.20pm temperature - 98.0
4.30pm 1 25ml measure of Johnny Walker whiskey
5.00pm temperature 98.5
Everything I have read in the literature suggests that alcohol depresses body temperature. This would seem to suggest otherwise.
01-28-2013, 07:45 PM
Reason for rt3 in.first place is starvation and.preservation. carbs and.hypercalories can lower rt3
hint during high school we used to sip on JD to stay warm and the bus stop.
Too many factors over lap.when. it.comes to.symptoms
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