Friday, October 18, 2013

Benign Fasciculation Syndrome (BFS) and Mycoplasma (Part III)

I would have died when I was 10 if our general practitioner did not find out I had a gamma globulin deficiency (called the silent killer because it symptoms are hard to detect). He solved the problem, there were no specialists. Today, our doctor crams 30 patients into a daily schedule (15 minutes per patient). He only works 3 days a week, but does not seem to have any time to do any research on patients in his care that are struggling. And our doctor also made it a point to blame our insurance company, Blue Cross Blue Shield of Colorado, for the reason referrals and appointments were moving slowly. All of the specialists my wife saw said a person’s health insurance coverage has no bearing on appointment availability. Interestingly, Blue Cross Blue Shield regularly adjusts our doctor’s claims by as much as 50% for an office visit. This is why he does not like Blue Cross Blue Shield - because they do not think it is acceptable to charge over 100 dollars for a 15 minute appointment (we live in the middle of nowhere, so doctors are far and few between). This is especially true for a doctor who sets up appointments to merely say “I do not know what is wrong with you”. This information could have been conveyed in a simple phone conversation. He told us it takes up to 3 months to see a Rheumatologist, especially a patient like my wife who he continued to assume had nothing wrong with her, other than depression (Yes, my wife became depressed. She didn’t start out depressed, but after being sick for 6 months, anyone would become depressed. More than depressed, she was frustrated with the medical industry. She is a fighter and was her own best advocate.). My wife set up an appointment with one of the best hospitals in the country and only had to wait 1 week to see a top rated Rheumatologist. Why? Simply because my wife advocated for herself and called the hospital directly. She went over her records with a nurse who reported the information to a Rheumatologist who expedited her appointment. It took our doctor’s office 2 weeks to fax my wife’s records to this hospital and even lied about getting it done sooner. Yes, my wife’s waiting time for an appointment was less than the time it took to set up the referral. Interesting how our doctor would not take 15 minutes to advocate for his patient to expedite an appointment because he saw no urgency, but a Rheumatologist who had yet to see my wife thought differently. This is quite a contrast in urgency. In other words, it is sad to say, but we are convinced our doctor cares more about money than my wife’s well-being. If he cared about her health he would have called a few times to check in on her. The doctor who saved my life as a youth visited me at home on his own free will and dime. The bottom line; advocate for your own health and if your doctor is not listening go elsewhere – even if you have to drive hours for an appointment.

We think my wife’s condition was intensified by the fact we live at 8000 feet (mycoplasma thrive at low pressure). What is interesting about this story is that at times my wife had several BFS symptoms similar to mine including muscle twitching. As it turns out, I suffer from many symptoms of a mycoplasma infection including arthritis (but blood work says I do not have arthritis but I have bone growths on my knuckles), low body temperature, hair loss (more so than others in my family), skin rashes, Raynaud like symptoms, allergies, sore throat, muscle pain and fatigue, and so on. It turns out, I too am positive for mycoplasma. Unfortunately, in my case, the organisms have not only been present for a long time but probably active for a long time doing irreversible damage. The sooner mycoplasma infections can be identified the quicker they can be corrected and the better chance of making a 100% recovery.

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