I also got a 10 day prescription for the Levofloaxcin and am on day 8 of that. It has really helped to knock this crap out of my system. It's a very strong antibiotic, it's also used for anthrax and the plague. I will likely be put on another round of it after this.
Anyway I did hear back from the ID Dr. two days ago and she said I have endocarditis, encephalitis and my left lung is 75% full of bacteria and other bad fluid. I think that has resolved some since I had the Chest CT because my cough is much much better. Regarding the endocarditis (which if you didn't click the link, is an infection of the inner lining of the heart) I have an appointment with a Cardiologist to talk about as they want to make sure I don't need heart surgery and that the antibiotics are clearing the bacteria. That is also what is causing my heart palpatations (heart skipping beats) and tachycardia (heart beating too fast). The Encephalitis is what is causing my confusion and walking into walls, getting bloody noses, headaches, all of that. And if you didn't click the link, Encephalitis is swelling of the brain...caused by infection or virus.
So essentially I had a virus, they are still thinking West Nile but it was not this year's version and they do not know how I had a version that they were aware of 2 years ago, reactivate. I am a medical mystery as far as that is concerned. The virus caused pneumonia and then strep, which caused the endocarditis and who knows what caused the brain swelling.
And the reason I had this train wreck happen is because I have Lupus. Lupus is an autoimmune disease with no cure. It, in laymans terms, is my body attacking itself. My immune system is in overdrive and can't recognize bad bugs from my good cells and it goes after everything. So my body was completely unable to fight off this what should have been mild virus, and the virus was allowed free range to wreck my body. In fact, not only was my body unable to fight it off, but it was working against me by killing all of my good cells that would have helped attack the bad bugs. It's been in remission my whole life (it's typically something you are born with. It is not AIDS. It is not contagious. My kids are scared of me because they think I'm going to give them some disease. I'm still me, and I can't hurt you - it's actually very similar to MS, another autoimmune diseases), and I"m at the right age for it and the right gender, and a simple virus which shouldn't have amounted to more than a cold, caused a flare.
It explains so much though. Why I get sick so much, why I can't seem to kick things as fast as I should, why I am always so wiped out. It always lays there in remission and the symptoms are mild then (fatigue, joint pain, getting sick often)...but when there's a flare, all hell breaks loose. I recognize now, that week before I got sick where I was so fatigued I could barely function...that was the first sign of a flare. Now when I recognize that, I know to get on antibiotics right away and steroid treatments. A simple cold can kill me. My immunity system is unable to protect me. During a flare, not only will you feel very very sick, but your hair falls out, you have constant fever, no appetite, weight loss, severe fatigue and joint pain and for some people rashes, but thankfully mine hasn't done that...yet. I did have all of that other stuff going on...still do.
Some of the symptoms include (from WebMD):
People with SLE can develop different combinations of symptoms and organ involvement. Common complaints and symptoms include severe fatigue, low-grade to moderate fever, loss of appetite, weight loss, muscle aches, joint aches and swelling, hair loss(alopecia), arthritis, ulcers of the mouth and nose, facial rash ("butterfly rash"), unusual sensitivity to sunlight (photosensitivity), inflammation of the lining that surrounds the lungs (pleuritis) and the heart (pericarditis), and poor circulation to the fingers and toes with cold exposure (Raynaud's phenomenon). Complications of organ involvement can lead to further symptoms that depend on the organ affected and severity of the disease.I have all of that except for the rash stuff and seizures and thankfully no sores or ulcers. But the sensitivity to sunlight really hit home, that is new for me and it is literally painful to be outside without very dark sunglasses on.
And I'm losing my hair, it's so bad I need to consider a new hair style and am constantly in headbands because I'm getting bald patches. I've always had thick and long, what I would consider to be beautiful hair, so this rocked my world. Call me vain, fine. It's just hard to deal with, I cry after most showers where I wash my hair and literally thick handfuls of it fall out. The good news is it will grow back once the flare is gone.
Half of Lupus patients also find that they have severe issues with their kidneys - another favorite body part the disease likes to attack. I do not know yet if my kidneys are at risk, but I will be tested for it since there is a family history (with Alex) of kidney issues. Likely he got that from me but he got diagnosed first which is a bit odd... normally a parent or grandparent is diagnosed first with genetic issues.
I have the SLE kind of Lupus for sure, which means it's systemic, it's also the most serious form. It attacks everything. The good news is there are periods of remission where I won't notice many symptoms at all. And of course periods of flare ups which I described above. There is medicine I can take to prevent flare ups...I will likely be put on a course of steroids right away to help with the inflammation...and long term there is a cocktail of drugs I can take to keep it from flaring up...although a new friend of mine with Lupus said that in the community, most people don't know whether Lupus symptoms or the drugs are worse. I have a good chance of living a normal life span and a mostly normal life if I can keep my organs healthy and keep that nasty cancer away. But, I also need to think about some lifestyle changes...reducing stress, staying out of the sun, eating healthfully, trying to not get sick (ha ha, that's not possible with two kids and working in the germ cesspool) mild exercise, but my new friend said that lots of people with Lupus can exercise normally. My Dr. told me for right now just easy walks and yoga are all I'm allowed. Those even sound like too much, I still can't walk a block or even a flight of stairs without needing to sit down and catch my breath.
I have been referred to a Rhumatologist who will map out more long term care for me to manage this and hopefully prevent it from getting too bad later in life.
I don't think it's hit me yet. I don't consider this to be very serious or life altering, but I think once I get more informed and am hit with constant periods of flares and remissions the rest of my life, it's definitely going to get real. I'd love to hear from anyone who has it or knows someone who has it. Knowledge is power and right now I'm feeling pretty clueless.