Chronic Lyme Disease Summit 2

Day 3 NHBPM 30-day challenge - A conversation with your doctor



There have been so many conversations with so many different doctors.  I've posted about the most negative one before -- the rheumatologist who laughed at me when I took out my notebook because I couldn't remember everything I wanted to talk to her about due to brain fog --  she told me, in no uncertain terms, that I did not have fibromyalgia or any other rheumatological condition.  Her nurse was also not nice when I said my pain was a 10, she said that would be impossible since a level 10 pain register meant you were unable to function.  Clearly, you don't know me, lady.

So, let's not be negative.  There is way too much negativity in the world today.  Enough already!

I bounced around to several primary care doctors, and got no answers (I want answers, not medication or surgery!) and ended up going back to my original primary care physician.  Let me explain, I had no insurance from early adulthood until about age 40.  Therefore, I never went to doctors (even though I have had chronic pain ever since I can remember).  Once I got insurance, as  a 40th birthday "present", I made an appointment with the doctor next door to my office where I work.  The man is brilliant, but he gave me the creeps at the time (I have issues with male doctors) and I high-tailed it out of his office as fast as I could and never went back.  I realized the error of my ways about four years later, having changed primary doctors a couple of times during that era, and getting absolutely nowhere.  Let it be known that female doctors are not any better or more sympathetic to female patients (see above!), as I had originally thought.   Kicking myself for getting it wrong with the brilliant doctor next door, I begged to be re-instated as a patient.  I learned he was not taking on new patients and I still tried every year at insurance renewal time to get back into his practice, to no avail.  A new doctor joined his practice in 2008 and I jumped at the chance to get back into the office next door.  Even if I couldn't have my original doc back, at least I would be in his office and maybe some of his brilliance would rub off on his junior colleagues.  It didn't quite work out that way, but it was pretty good.

This new doctor was a young guy, about 10-15 years younger than me (gulp) and very knowledgeable about fibromyalgia and he believed in the illness too, unlike most of his older counterparts.  He listened to me, worked closely with me and above all BELIEVED me (this is huge).  He is the one who officially diagnosed me with fibromyalgia.  He prescribed Savella, and it worked ok at first, but then the flop sweats and exhaustion were so extreme I couldn't stand it anymore and weaned myself off of it.  By this time, young doctor's wife (also a doctor) had taken a new job in Arizona or some such place, and he was following along with her.  Bye-bye new great doctor.  I was crushed.  But, guess what happened?!  I got a letter from the practice, notifying me that he was leaving and stating that original doctor was taking on some of new doctor's patients!  I ran next door as fast as I could and said I must get back with this doctor.  Voila!  It worked, and I've been with him now for about two years.

The man is brilliant and thorough.  Many of his patients complain that the wait is way too long, but that is because he is so thorough with EVERY one of his patients.  It is worth the wait.  Bring a good book and your iPhone and you are all set.  This man goes over everything each time we visit.  He doesn't miss a detail.  He remembers who I am, and he believes me when I say I am in pain and indescribable fatigue.  He is reasonable about trying things "my way" (I am very anti-Rx drugs and surgery).  For instance, when he said I had high blood-pressure, I attributed it to the birth control pills I had been put back onto by my gynecologist.  He said he agreed and he would give me 4 months to get off of those and see if the BP lowered.  It worked. Unfortunately, it also means I have painful periods again, but oh well what are you gonna do?  A woman of 52 shouldn't be on birth control pills ANYWAY and I was right, they were causing my high BP.

I have a somewhat rare blood disorder called hereditary spherocytosis, which I was born with.  Having HS requires that you take folic acid every day.  In addition, my doctor found that my levels of B12 and Vitamin D were low.  In his own words, "I am not a vitamin guy.  But in your case, I am prescribing vitamins.  YOU need them!"  As I said before, I am against prescription drugs (too many side effects and I feel that Americans are all "on something" and that really bugs me).  We need to rely less on the pharmaceutical industry, and combine alternative treatments with standard medicine for those who do not have life-threatening illnesses.  Thankfully, I have found a doctor who is willing to work with me in that direction.

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