The other day I saw someone tag a high school classmate on a post, the title caught my attention as it had to do with fibro so I clicked. What I read was eye opening and disturbing all at the same time. In this blog post the author ( a woman ) describes how she has been diagnosed with Fibro, CFS, and was also tested for MS ( she did not have positive test results for MS) . She describes being diagnosed with fibro in her early 30’s by a young doctor who told her she would eventually be wheelchair bound because her muscles would atrophy. She goes on to talk about how sometimes she would have periods of time when she felt better so she decided that Fibro was a BS diagnosis and she was sure she didn’t have it.
Later in the post, she talks about after she was diagnosed , Saying that she does not believe that Fibro or CFS are a diagnosis . She told the Dr’s that they were just putting her in the Fibro/ CFS diagnosis because she is a woman and they just didn’t know what else to do with her. Here is where we agree and disagree. Do I believe that some Dr’s take the lazy approach and lump people into one of those two categories just to not have to deal with them… YES! Do I think that they are BS and aren’t a real diagnosis.NO! Fibro has been proven to be real through testing.
She goes on to say that she would honestly rather have been diagnosed with MS than with Fibro and CFS, because people believe you when you tell them you are sick with MS and they don’t always when you say you have Fibro/CFS.. While I agree with the last part, as we have touched on in previous posts that many people don’t want to accept that fibro or CFS are real diseases. I was having a hard time while reading this because it felt like she was doing the same thing to us.
Either way, it turns out that neither Fibro or CFS was the right diagnosis for her. She eventually found it, which is fantastic. She was able to get an appointment with a dr. from Kansas City, MO named Dr. Joseph Brewer. When she saw Dr. Brewer he told her he was almost positive that she would test positive for black mold poisoning. A urine test confirmed that Dr. Brewer was right. Happily there is a treatment for toxic black mold poisoning. I always knew you could get sick from being around mold but never had really heard any of the symptoms or honestly, never really thought too much about it. After reading her blog though, I decided to do a little more research. Listed below are some exerpts from one of Dr. Brewers studies on black mold poisoning and CFS patients.
“The study was conducted for 6 months from 1 February 2012 to 31 July 2012. Patients with chronic illnesses, many of whom were previously diagnosed with CFS, were seen in a private practice (JHB) which is a consultative outpatient infectious disease clinic in Kansas City, Missouri. Out of approximately 300 patients with chronic illness that were seen for routine follow up clinic visit, 112 met the criteria for a diagnosis of CFS …..” “These patients were from diverse geographic areas in the United States however, the majority resided in Midwestern states. The patient ages ranged from 15 to 72 years with 84 (75%) females and 38 (25%) males. The duration of symptoms ranged from 2 to 36 years with an average duration of 7.8 years. The illness was so severe that 76 (68%) of the patients were either unable to work, receiving disability or unable to attend school. A past history of mold allergy and/or chronic sinusitis was present in 50 (48%) of the patients. These patients failed to respond to treatments and their CFS symptoms lingered.” “Common symptoms in this patient population included fatigue, headache, flu-like symptoms, cognitive complaints, myalgia, arthralgia, gastrointestinal problems and various neurologic symptoms. Other previous diagnoses included fibromyalgia, Lyme disease, peripheral neuropathy, orthostatic intolerance (including postural orthostatic tachycardia syndrome and neural-mediated hypotension), migraine, chronic dermatitis, gastroparesis, chronic abdominal pain, irritable bowel syndrome, interstitial cystitis, anxiety, depression, chemical sensitivity, vertigo, chronic sinusitis, gluten intolerance, tremor, myoclonus and cognitive dysfunction.Routine laboratory parameters including complete blood count and chemistry panels were usually normal. Immune testing had been performed previously in most of these patients. The most common abnormality was diminished natural killer cell (NK) function. Other immune abnormalities were occasionally noted (e.g., hypogammaglobulinemia).”
Hypofammaglobulinemia : a type of primary immune deficiency.
“Since these chronic conditions have been reported to be associated with exposure to mold and bacteria in WDB and previous studies have shown an association between CFS and sick building syndrome (SBS), it was decided to carry out an environmental history and discuss urine mycotoxin testing . During these follow up visits, over 90% of the 112 patients confirmed exposure to a WDB and frequently the presence of a moldy environments in the home, workplace or both.” “Mycotoxin testing revealed the presence of at least one of the toxins in the urine of 104 out of 112 (93%) patients. This included 103 with positive results and one that was in the equivocal range for OTA.” “Conclusions Mycotoxins can be detected in the urine in a very high percentage of patients with CFS. This is in contrast to a prior study of a healthy, non-WDB exposed control population in which no mycotoxins were found at the levels of detection. The majority of the CFS patients had prior exposure to WDB. Environmental testing in a subset of these patients confirmed mold and mycotoxin exposure. We present the hypothesis that mitochondrial dysfunction is a possible cause of the health problems of these patients. The mitochondrial dysfunction may be triggered and accentuated by exposure to mycotoxins.
– See more at: http://www.mdpi.com/2072-6651/5/4/605/htm#sthash.tPn0eWPS.dpuf”
Why the hell am I going on and on about Black mold? We haven’t been diagnosed with CFS we have fibro! Well originally I didn’t plan on doing any more reading on this until I looked at the symptom list…
Black Mold Symptoms
*muscle pain, cramps, burning, unusual shooting (ice pick-like) pains
*fatigue, weakness, flu-like symptoms, fever, chills
*shortness of breath, cough
*abdominal pain, diarrhea
*chronic sinusitis, sore throat
*burning eyes, red eyes, sensitivity to light
*difficulty with thought processes, memory loss, loss of concentration, confusion, disorientation, “brain fog”
*dizziness, blance problems
*metallic taste in mouth
*numbness and tingling
*temperature regulation problems
*excessive thirst and urination
*excessive menstrual bleeding
*mylar flush (face flushing)
* Blurry vision and vision worsening
* Irregular heartbeat
*Low Blood Pressure
And many more…
Sounding familiar? Yeah to me too! Now I am not saying that everyone with fibro has this black mold poisoning but is it worth looking into if you think it is a possibility? ( Say you lived in a home when you were younger that used to flood during hurricane season like I did, or the place you work has drainage problems) I personally would rather have a Black Mold diagnosis… because there is a cure! That sure sounds a lot better to me than fibro and years of trying to find the right med combo and dietary program. Has anyone heard of this before? It was certainly new to me even after all my research. I will be talking to my Dr about doing this urine test just to rule it out ( Hey, I’ll try anything!). What are your thoughts on this? Is this something you will be speaking to your Dr about? Love to hear what you think!
Until next time..
The link to the blog I was discussing in this post. http://sherbailey.com/fibromyalgia/