I am a 38 year-old male with Lyme disease, originally diagnosed and treated back in 1997, with all kinds of intermittent symptoms that have come and gone since. By my early 30s, doctors thought I probably had multiple sclerosis or possibly even ALS. Long story short, I finally was re-diagnosed with Lyme about 18 months ago, treated and I am much better but not well.
Last night when I got home from work, I removed my socks and noticed pronounced indentations on my lower legs. These lasted for hours, and I searched online for what could cause that. This has been going on for at least 5 years; I recall being embarrassed about it at the gym and stopping wearing shorts because of it, but I never looked into it beyond that. I no longer exercise because I've become exercise and heat intolerant--specifically, I get very light headed and dizzy, often confused (e.g., couldn't find my locker in the locker room until my body cooled down), often severe hand tremors, and when I overexert, it tends to cause a flare up of Lyme symptoms (nerve and joint pain) that lasts for weeks. I read last night that both edema of the lower legs and exercise intolerance can be symptoms of heart failure. I am aware that heart failure can be a complication of Lyme disease.
So here are potentially related symptoms based on a list of congestive heart failure symptoms from Mayo:
Shortness of breath (dyspnea) when you exert yourself or when you lie down: Considering that I don't work out often, I don't think I get overly "winded" when I overexert.
Fatigue and weakness: This is extremely common for me--however, it's also a primary Lyme disease symptom.
Swelling (edema) in your legs, ankles and feet--I am relatively thin and I don't think that I *look* particularly swollen; however, socks, no matter how tight or loose, always leave a pronounced indentation that lasts for hours after I take them off. (I did the "15 second test" and that does not leave a mark.)
Rapid or irregular heartbeat--I get this a lot and have gone to the emergency room because of it.
Reduced ability to exercise--I can't work out anymore for the reasons described above. In addition to tremors, shaking, weakness and dizziness, I often get temporary double vision after overheating, whether from exercising, taking a hot bath, or being outside in the heat.
Persistent cough or wheezing with white or pink blood-tinged phlegm--I don't believe this is a problem for me.
Increased need to urinate at night--I'm not sure how to gauge this, but I use the bathroom on average 1-2 times per night.
Lack of appetite and nausea--This seems to be occurring more frequently, although I usually have a pretty strong appetite.
Difficulty concentrating or decreased alertness--Serious problem.
Sudden, severe shortness of breath and coughing up pink, foamy mucus--I get "air hunger" sometimes, infrequently these days, but I don't recall coughing up any mucus as a result.
Chest pain if your heart failure is caused by a heart attack--I go through periods of days or weeks during which I have severe pain in my left shoulder, arm, and the left side of my neck, which sometimes radiates to my chest and even my jaw. This has been going on for many years, and it tends to come on gradually and then intensify over about an hour. The pain becomes severe and may last 30 minutes to several hours and then eventually dissipates. Other times, my neck, shoulder and left arm (occasionally the right, as well, but less often) are painful and stiff for weeks or months on end.
A couple of months ago, the pain, lightheadedness and racing heart were severe enough to send me to the ER. I felt like I was going to pass out during the work day and colleagues insisted I go to the emergency room. I explained my symptoms, and they took my BP (lying, sitting, standing), an EKG and did a chest X-ray, and they told me I am fine and sent me home with a printout of instructions about how to stretch to relieve a strained neck. I have had several EKGs previously, two administered by my Lyme specialist, who checks my heart because of the risk of Lyme carditis, and two by my GP following sudden, severe vertigo attacks. (The vertigo attacks became increasingly frequently years ago, but subsided following antibiotic treatment for Lyme.)
So to summarize: I seem to have the majority of symptoms for heart failure/congestive heart failure, but not all of them. I've had several EKGs and one chest X-ray, all of which were normal, and the most recent of which were a couple of months ago. I presume/hope that the tests would have identified cardiac abnormalities related to HF/CHF, and I am loathe to even consider going to yet another specialist doctor--however, of all the specialists in the world, I've never been to a cardiac doctor. I feel like even with my severe health complications, I'm likely too young to have heart problems and the tests seem to suggest that my heart is OK.
I'd appreciate any thoughts/guidance.