Sunday, April 20, 2014

An Epidemiology Study of BFS (Part III)

Statistical Significance, Practical Significance, and Correlation

No survey discussion is complete without talking about statistics. Statistics can be vastly confusing and open to many interpretations. Statistical significance between parameters does not imply practical significance. Sometimes commonsense has to be used to determine practical significance from statistical significance. However, in a complicated survey on a complicated subject (in which we know little about) such as BFS this is hard to decipher. In fact, because we know little about BFS, one could conclude any statistical significance is also practical significance.

High correlation does not imply statistical significance especially if the sample size is small. Conversely, statistical significance may not imply strong correlation, it may only occur because the sample size is large. Hence, it important to report statistical significance, sample size, and correlation, together as one item, to determine practical significance. [12] In this survey, since the sample size is large, the data fails to indicate many instances of strong correlation between various parameters, but mostly weak to moderate correlation – yet this data can be of practical significance. Weak correlation, strong statistical significance, and large sample size is usually better than weak statistical significance, small sample size, and strong correlation. [12] And data from Table 1 through Table 7 indicates most correlation between parameters is of the weak variety. In any event, any correlation weak or strong would be new and helpful information on the subject of BFS.


Many people with BFS can point to a trigger that initiated the start of their symptoms. Some of these triggers were an illness (virus), prescription drugs, vaccination, spine injury, exposure to toxins, stress, trauma, exercise, or some other cause. But something has to happen within the body to act as a catalyst to convert these triggers into symptoms. Mycoplasma may be one such catalyst. I am not saying that mycoplasma is the catalyst for all BFS patients, but I do believe it is the reason for some.

According to the National Institute of Health and U.S. National Library for Medicine, mycoplasma is the smallest free living organism and is cross between a virus and bacteria. What differentiates mycoplasma is that they lack a cell wall and that makes them hard to treat because they are resistant to most antibiotics and penicillin. Mycoplasma can lie dormant in the body until another bacteria, virus, stress, or toxin activates the symptomatic phase. Once this occurs mycoplasma multiplies within the cells of our bodies and destroys the cell. Once the host cell is destroyed, symptoms are created by the release of three types of toxins into the bloodstream – Ednocytokines which cause inflammation and pain; Neurocytokines which produce symptoms found in MS, Depression, and anxiety; and Allergens causing allergies.

Most immune systems can fight these organisms; however people with compromised immune systems may develop chronic diseases and infections. Chronic infections implicated with mycoplasma are Rheumatoid arthritis, reactive arthritis, psoriatic arthritis, chronic fatigue syndrome, pneumonia, flu, allergies, fibromyalgia, Gulf War Syndrome, lupus, scleroderma, vasculitis, multiple sclerosis, Sjogren’s syndrome (dry eyes and throat), Crohn’s disease, irritated bowl syndrome, heart disease, depression, AIDS, ALS, appendicitis, Grave’s Disease, thyroiditis, Lyme’s Disease, asthma, Alzheimer’s, and a plethora of other autoimmune disorders.

There are four main types of mycoplasma found in humans: mycoplasma pneumonia, mycoplasma hominis, mycoplasma genitalium, and ureaplasma urealyticum. Some people are born with some or all of these forms of mycoplasma. They thrive during times of low pressure and live off body cholesterol. They are commonly found in animals and insects and can be transported by the dust in the wind. Mycoplasma can also be passed between humans similar to how the flu is transported. And some mycoplasma can be transported sexually. Needless to say, most people have mycoplasma. [13]

Mycoplasma symptoms include chills, cough, fever, shortness of breath, chest pain, headaches, fatigue, muscle pain and stiffness, joint pain and stiffness, sweating and clammy skin, diarrhea, ear and eye pain, skin rashes, sore throat, allergies, phloem, sleep disturbances, visual disturbances, memory and concentration impairment, arthritis, kidney stones, gall stones, testicular pain, asthma, heart attacks, stroke, burning while urinating, the sensation of a full bladder, Raynaud’s Syndrome like symptoms, low body temperature, hair loss, spine paralysis, weight loss, and dozens of other symptoms making mycoplasma infections hard to identify and treat. [13]

The good news is that people with chronic conditions caused by mycoplasmas can be corrected if not 100% to some degree. The common treatment is a certain type of antibiotics – tetracycline and minocycline work well. Unfortunately, it could take several months or even years of antibiotic treatment to rid the body of these toxic organisms. If a prolonged antibiotic treatment is required then they should be rotated to avoid the development of resistance. During the first few days or weeks of the treatment, symptoms can initially get worse before they improve – this is known as a Herxheimer reaction. [13]

Just like BFS, mycoplasma symptoms are unique for each person. Mycoplasma symptoms can be complicated when a person has an infection due to multiple forms of mycoplasma. Mycoplasma infections can also be complicated by the number of internal organs the infection infiltrates. The same can happen if a person with BFS has multiple triggers or causes – they can get very complicated symptoms. If some BFS cases are caused by mycoplasma infections, then this gives credence to the argument that BFS is an autoimmune disorder in some people. Is it feasibility mycoplasma infections can lead to BFS symptoms? Absolutely, in fact it is the most sensible argument of a catalyst working inside our bodies to transform a traumatic experience into actual symptoms. We know very little about mycoplasma and as more research comes forth, it may become more obvious of its role in BFS. If mycoplasma is shown to commonly coexist with ALS, MS, and fibromyalgia patients, then how hard can it be to accept that mycoplasma coexists with some percentage of BFS patients. What’s worse mycoplasma can be masking chronic conditions that can be cured in BFS patients.

BFS and Personality Types

Although a study on BFS and Personality Types was not conducted in this research survey, it may result in some interesting findings. One simple example of personality types is Type A and Type B personality theory. According to this theory, driven, demanding, and achievement-oriented people are classified as Type A, whereas easy-going, relaxed individuals are designated as Type B. The theory originally suggested that Type A individuals were more at risk for coronary heart disease, but this claim has not been supported by empirical research. However, there has been a study which proves that people with Type A personalities are more likely to develop personality disorders whereas Type B personalities are more likely to become alcoholics.

During the course of my research over 3 years I have been contacted via email and over the phone by several dozen BFS patients. A majority of these people I would conclude are Type A personalities. This may link, for instance, stress and exercise as triggers for BFS. High achievers will naturally put more stress on their lives and these same types of people do not necessarily use exercise to relax, but to train hard for competitions placing more stress on their lives. Hence, it may not necessarily be the exercise triggering BFS symptoms, but the stress to achieve athletically is triggering the BFS symptoms.

A disorder such as BFS creates a vicious cycle of stress on patients. Type A personalities already place unneeded stress on their bodies and the introduction of BFS symptoms only creates more unwanted stress for the body as patients fear the worse (ALS and MS). It is hard for Type A personalities to relax and accept what they have is benign when it is wrecking-havoc on their lives. Face it; it is hard for Type A personalities to accept they have a disorder when there is not much data or information the subject – they need concrete proof or evidence that they have BFS. On the other hand, Type B personalities are more able to relax and therefore can readily reduce stress that may trigger BFS symptoms and if they have BFS they can mitigate symptoms.

Are People Commonly Misdiagnosed with BFS?

According to some neurologists there are four types of Peripheral Nerve Hyperexcitation syndromes. The first is BFS and people with this should only have muscle twitches and experience no other type of muscle symptoms. This may explain the reaction most patients diagnosed with BFS get from doctors is it is “No big deal”. If patients only had twitches than their syndrome would certainly be much easier to live with. If you experience other types of symptoms than it is more likely you have Cramp Fasciculation Syndrome (CFS), Isaac’s Syndrome, or Morvan’s Syndrome and these syndromes are listed in the order of their severity.

According to the survey data, out of 438 people who have taken the survey to date and were not removed as being outlier, the following findings can be reported:

· The 438 people experience, on average, 7.7 of the 11 listed symptoms to some severity

· Only 2 of 438 people experience twitching as their only symptom

· Only 13 of the 438 people experience two or fewer symptoms

· Only 12 of the 438 people experience symptoms in fewer than 8 of the 11 body regions surveyed. The average person experiences symptoms in over 9.1 of the 11 body regions.

What can one learn from the above data? The following conclusions can be made:

· At a minimum, 436 people in the survey have been misdiagnosed and do not have BFS. They more than likely have CFS or Isaac’s Syndrome based on some neurologists’ definition of peripheral nerve disorders. In fact, my diagnosis was changed from BFS to CFS after seeing a fourth neurologist. Despite this change in my diagnosis, my symptoms remained constant.

· This may explain why so many people, including myself, thought there was an overlap of symptoms between BFS and other neurological syndromes and disorders such as RSD and Fibromyalgia. I clearly assumed (after telling three neurologists) my eight symptoms were part of BFS since they concluded I had BFS.

· Granted, people who reach out to social media forums on BFS are more likely to have more bothersome symptoms. This may explain why so many people in this survey have multiple symptoms over most of their bodies (Over 99% of the population). After all, a person diagnosed with BFS and only experiencing muscle twitches occasionally and has no other symptoms, may be far less likely to join social media and participate in this survey on BFS. 

The real question is why do neurologists misdiagnose so many patients with BFS? This is a tough one to answer but here are a few of my thoughts on the subject:

· Most neurologists are centered on an array of neurological diseases and Peripheral Nerve Hyperexcitation syndromes rank low on that spectrum of disorders.

· BFS is a convenient diagnosis that can send patients on their way without any worry that they have something more serious like ALS and MS.

· Fasciculations or muscle twitching is a symptom that can be viewed both visually and by EMG. Other symptoms such as pins and needles, cramps, muscle fatigue and weakness (not atrophy), headaches, itching, numbness, muscle stiffness, muscle pain and soreness, muscle buzzing or vibration sensation, and sensitivity to temperatures are all harder symptoms to verify and are mainly subject to patient input. Hence, it may be possible that neurologists may only diagnose what can be verified through technology and or observation. Maybe it was the fact that my muscles did something unusual that enabled my neurologist to change my diagnosis – he could see my muscles did not contract properly when they were hit with his reflex hammer. Or maybe it is because my neurologist has more experience in dealing with BFS and or CFS patients.

BFS / CFS Causes

Until recently there have been no studies on peripheral nerve hyperexcitation disorders to determine what may cause or trigger these symptoms. One possibility causing CFS and maybe even Isaac’s or Morvan’s syndrome can be a benign tumor in the body. [14] The study found that 25% of people with CFS have a specific neural autoantibody produced by a benign tumor that can cause CFS symptoms. If you have the antibody then you need to get a CT scan to find the tumor. So it is possible to have a benign tumor wreaking havoc in the bodies of BFS patients.

A Day in the Life with BFS

I take medication to help me sleep because the twitching and paresthesia symptoms are too bothersome. I wake up every half hour or so to rescue my arms that have gone dead from the elbow to the finger tips. Mix in a few foot and calf cramps and I finish another restless night of sleep. It takes about 10 minutes from the time I get up to begin feeling and regaining the strength back in my arms and legs. Once out of bed I take another 15 to 20 minutes to get the stiffness out. I teach myself how to touch my toes again and to put on my workout clothes every morning. After breakfast I hike, bike, or climb for several hours fighting cramps throughout the body. I exercise daily to prove to myself I have nothing worse than chronic BFS. The exercise exasperates my symptoms, but a long hot bath seems to help some. Most of my work is computer related and it is usually interrupted by finger oscillations, stiffness, muscle pain, or the fact my hands have lost their feeling. I have to wear big booties on my feet because they get cold even when the room is over 80 degrees. Sometimes I even wear gloves when it is 80 degrees. The evening hours of my day is usually confined to laying down on the couch thinking about another restless night of sleep all the while feeling the barrage of BFS symptoms ravaging my body. My muscles are too fatigued and sore by this time to do much of anything productive.

No comments:

Post a Comment