She called me yesterday too, then to tell me that they were mailing me my lab work results from my most recent office visit. I figured that must mean all the test were negative otherwise they would have said something. She called for something else today!
Let me start with why all the blood-work and such. Well, I had been feeling progressively more and more miserable as each day went by for several months - since at least around last October or November (even as early as July or August but the symptoms came and went back then now that I think of it) up through August 12th just recently. That day, my doc sent me to the ER where they diagnosed me with a urinary tract infection and shot me up with a huge vial of some antibiotic. They also prescribed me ten days worth of another antibiotic - huge pills.
I was amazed because the day after I received the shot, I felt a hundred times better than I did while in the ER. Two days later and every pain in my body, pains I have been having in my joints, inside my bones, in my muscles & terrible headaches - all since about a year ago - disappeared. My lightheadedness, outright dizziness, loss of balance, severe headaches, night sweats, absolute fatigue, utter weakness, inability to remain awake - all had gone the way of the dinosaurs - not one was left. Then about 6 to 8 days into the antibiotic pills they had prescribed for me - the aches & pains started to come back just a little, my blood pressure started going up and down as if on a roller coaster (and that got better for several days after the antibiotic shot in the ER), I got somewhat lightheaded again and started falling asleep unable to stay awake a few hours after getting up in the mornings. It's been just like before I went to visit the ER just not as severe - more like it was back in October or November fairly early on once the fatigue had set in. I have been slowly getting progressively worse again since then.
So, I went back to the doc. I explained I was starting to feel progressively worse again, almost all the same symptoms. I asked her if maybe - just maybe - I had had more than a urinary tract infection, possibly two diseases and the antibiotics did not kill the other one. I also asked if it was possible that the UTI had been caused by a more severe underlying illness. Much to my surprise she agreed with me and was going to run some tests, then suddenly said my insurance would not pay for the tests she wanted to run unless they were ordered by an Infectious Disease Specialist. I said "Why not" because my insurer always pays for everything a doctor finds medically necessary. She disagreed so I called my insurer. They said she should jab away and take all the blood she needed from me. She did, well her lab worker did anyway. The gal in the lab filled several vials with my blood.
She wound up testing me for: COVID-19 both the illness and the antibodies (three tests for them), syphilis, chlamydia, hepatitis, HIV, Lyme Disease (three tests), Non-Treponemal screening, Neisseria Gonorrheae (the clap? - not likely - it's been that long) Rocky Mountain Spotted fever, RPR Rfx On RPR Conform (?), Tick Borne Disease Panel, Treponema pallidum Antiobodoes, a CBC and urinalysis.
Then today, as I said above, I got a call from the nurse as I was writing my blog post immediately prior to this one. She said the doc got some additional tests back today and that I have - drum roll - Rocky Mountain Spotted Fever. I'll be damned if I had not told her and my prior doc about having been bitten by ticks before this all started but they only checked my for Lyme disease back before this round of tests - just like the docs did in NY before moved down here had tested my for Lyme.
I have got to say, I am ever so happy they have it figured out (hopefully they found the only cause and nothing else is also causing my maladies) and they can give me the right medication to kill it. My concern now is not that the nurse told me I will probably get the squirts from a 20 day course of Doxycycline but rather that I am a bit worried (not too worried though) that the bug may have built up a resistance to antibiotics after the stuff they gave me recently that obviously only had a temporary effect on it. Come to think of it, last spring, I was seeing a Rheumatologist before leaving NY for much of the same symptoms that included a lot of red sots on my feet and lower legs (that I had for a couple of, or a few, years now along with joint & muscles pains). When I first left NY, I styaed in AR with my son. I was put on antibiotics while staying at my son's place because of similar issues and got better for a couple of months. Then it started again around August - I wonder if I have had it all along, even when still living in NY.
Whatever, whenever, they finally discovered the cause of my sickness and I hope it gets wiped out with the result of me feeling much better once again. Time and future blood tests will tell. My big hope is that my heart will go back to normal once I am cured. My guess is that is what caused it to beat less efficiently that normal (only diagnosed a couple of months ago close to the height of me feeling miserable and the cardiologist just chalked it up to high blood pressure and my age) - once again time and another test will tell.All the best,
I hope not to become a statistic due to the Rocky Mountain spotted fever, if I do I am sure they will list me as a covid-19 fatality. I never realized it before tonight that Rocky Mountain spotted fever can be fatal and is an extremely dangerous disease. One of the things that makes it more dangerous than it by itself is that if you get misdiagnosed for something and they treat you with antibiotics that are not effective as a cure forRocky Mountain spotted fever. For some reason that increases the death rate from Rocky Mountain spotted fever exponentially.
After reading up on RMSF, I am none to sure I have had this long term but maybe it could be the case. I have had a lot of its symptoms but also lacking some of them and in addition had others seemingly not associated with it. Yet, they have tested me for so many things maybe it is exactly what I have had for the past several months maybe even well over a year. I would like to find out more about it, maybe will see an infectious disease specialist to see if my theory that antibiotics given to me for other ailments, while not curing RMSF, may have at least weakened it somewhat. Of course there is also the chance I had something else and then coincidentally was just recently infected recently with the RMSF. If it has been long term, I probably am lucky I am not dead and here is why:
Rocky Mountain spotted fever damages the lining of your smallest blood vessels, causing the vessels to leak or form clots. This may cause:
Inflammation of the brain (encephalitis). In addition to severe headaches, Rocky Mountain spotted fever can cause inflammation of the brain, which can cause confusion, seizures and delirium.
Inflammation of the heart or lungs. Rocky Mountain spotted fever can cause inflammation in areas of the heart and lungs. This can lead to heart failure or lung failure in severe cases.
Kidney failure. Your kidneys filter waste from your blood, and the blood vessels within the kidneys are very small and fragile. Damage to these vessels can eventually result in kidney failure.
Serious infection, possibly amputation. Some of your smallest blood vessels are in your fingers and toes. If these vessels don't work properly, the tissue at your farthest extremities may develop gangrene and die. Amputation would then be necessary.
Death. Untreated, Rocky Mountain spotted fever has, historically, had a death rate as high as 80 percent.
That last sentence is pretty scary - 80% death rate if untreated. So, VERY lucky for me they discovered I have it, especially in light of the fact I never came down with a high fever which is one of the hallmark symptoms of this disease and when people who have it do not have a fever, it often goes undiagnosed until things get worse..
Greetings, may you have a speedy recovery. Glad you got is figgered out!
kick ass and get better!
Best wishes for a speedy and complete recovery!
I am a few years behind you (not yet retired but getting there) and every year am more sensitive to these kinds of things (could that be... cancer?!?)
I enjoy reading your blog and hope you stay well!
Cancer - I don't think so - not unless older age gets classified as cancer.
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