My rheumatologist is fabulous. Doctor Whitman at the Hospital for Special Surgery is a wonderfully thorough doctor. He takes his time with patients, and he tests for the full spectrum of possibilities. When in the office with him, he makes sure that you have your own print out of the test results, so that you and he can read through them together and discuss what they mean, and he also mails you copies of the test results to your home.
I’ve got lots of test results at the moment. The bulk of my chemistry is normal, except:
Vitamin D: low
Complement C3: low
Complement C4: low
Also, according to the tests it seems my urine is cloudy and crystally and mucousy and I need to drink more water or I’m going to get more kidney stones. (Kidney stones are horrible, by the way)
My previous infection of Lyme Disease from four years ago is no longer in my system, which is fabulous. The rheumatoid factor came back negative, as always.
What this means:
Low C3 and C4 is a classic indication of Lupus. However, it is also an indication of fighting off systemic infection. Macrocytosis is an enlargement of red blood cells, most often caused by bone marrow dysplasia
. An elevated MCH blood test result indicates macrocytic anemia due to folic acid or vitamin B12 or thyroid problems (but my thyroid has been tested repeatedly, and is fine). MCV tests the size of red cells in blood. The presence of red cells smaller OR larger than normal sized ones also indicates anaemia from defieciencies or bone marrow problems.
I’d been told years before that I had borderline anemia and hypotension, but was instructed to just eat more red meat and salt. I enjoyed that suggestion.
I’ve started taking Vitamin B12 and Folic Acid to see if this helps the Macrocytosis/MCV/MCH situation, as well as Vitamin D, Magnesium, Vitamin C, Vitamin E, and a multi, as instructed by my doctor.
After these tests were taken, I was also put on a new regimen of Prednisone; this time, Monday through Thursday every week. Strangely, I did not get that same spring in my step that I got the last time the steroids were taken. When I was last on Prednisone, I was going to the gym every day to stretch and cycle, was trying to take every advantage of feeling like my body wanted to MOVE. This time, there’s been little physical improvement, though it does make me restless and sleep terribly.
Then, this week I received MORE test results in the mail this week, indicating that I have:
Complement TOTAL: low
Anti-DNAse B: High
The Anti-DNAse B test detects antigens produced by the presence of a streptococcal infection (strep throat), and is elevated in most patients with rheumatic fever and poststreptococcal glomerulonephritis (a kidney condition).
Now, I've been terribly sick with a horrendously sore throat for weeks, and a low grade fever that dips and peaks as it pleases. I'd assumed it was just allergies or a cold, and I was just suffering more severely than usual due to the prednisone weakening my already crap immune system. However, seeing that there was a test indicating a strep infection, I called his office to see if I should be on anti-biotics. They had me come into the office for a throat culture and ANOTHER blood test.
The doctor called me yesterday, leaving a message explaining that my throat culture came up negative, but my ASO titer
was high. A high ASO usually indicates the possibility that a previous Strep infection has caused a poststreptococcal disease, such as scarlet fever, rheumatic fever, or a kidney disease
. He is putting me on a regimen of penicillin (only just decided over a phone conversation that took place in the midst of my writing this).
Meanwhile, I’ve been having abdominal pains for the past month, and have felt something not quite right in my lady parts. A visit to the gynocologist this week indicated that I do indeed have something going wrong in my uterus. There is something pressing against and into my uterine wall. The location would indicate the possibility of an ovarian cyst, and I do indeed have Poly Cystic Ovary Syndrome. However, during his examination, the doctor did state that it felt more like stool than a cyst, and he is sending me to get an ultrasound in the next few weeks to find out what is going on.
This is worrisome. Without doubt, I have some kind of connective tissue disorder, most definitely a genetic one, and very very likely it is a form of Ehlers Danlos Syndrome. While my joints of the shoulders and hips are excessively stretchy, I am not hypermobile, nor do I have stretchy skin. The only form of EDS that does not have hypermobility is the Vascular type of EDS. While all forms of EDS include a tendency towards internal tissues stretching apart and rupturing, the Vascular type of EDS is far more prone to organ rupture, most often of the intestinal, uterine, and arterial walls.
As a young teen, poking about my body naked in the mirror, seeing what was what, as a post-pubescent does, I came to find that I could easily slide a few inches of my large intestine outside of my body. I know now that is seriously abnormal. The very few experiences with anal sex I’ve ever had were quite untantalizing (no offense to those of you who dig it, it’s just REALLY not my thing), but did occur without physical resistance or pain of any kind, and much to the shock of my then-partner, not very tight. This is also terribly unusual.
Therefore, it is a real possibility that my current abdominal issues are due to intestines stretching apart and the rupturing prolapse of part of my intestine is pressing on my other abdominal structures. It could easily cause the cloudy and mucousy urine, as well.
Or, maybe I just have a squishy ovarian cyst.
Either way, all surgery is dangerous when your tissues stretch and tear apart and don’t heal well.
Things are getting complicated.
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