A little relief

Well, I have finally made it into therapy for the first time in many months. I felt like I could use another two hours on top of the hour I had to discuss everything going on. But I still feel as though I have made a little progress. I broke down a little bit when discussing my heart situation. I have realized I am actually incredibly scared.

I did mention it briefly in an earlier post, but I will recap here because I have a hunch as to what is causing it: I have incredibly elevated lipoprotein a levels. My number is in the three digit range, and healthy numbers are supposed to be somewhere below 40 I believe. I have done a lot of research because of the threat of a cardiac “event”. I want to know what to be prepared for if it comes down to it.

So, my cholesterol levels are great. My good cholesterol is really high, possibly because I eat a lot of fish (I don’t really eat any other type of meat…occasionally chicken but that’s it, mostly fish). So this is not an issue caused by something I am doing. As I was looking at peoples’ experiences with the new supplement I mentioned I was trying (Lauricidin) I noticed quite a few people with Lyme disease commenting. I started wondering, as this is not the first time I’ve run across people with Lyme disease in my searches regarding my health issues. I am beginning to think I could very well have Lyme disease that I could have been living with for over a decade. I was bitten by a tick when I was either a preteen or young teen, and I cannot recall if I had any odd symptoms afterward (the bite was in my ear, not sure if the telltale bulls-eye rash would be visible there, but not everyone gets that rash, as far as I have read). Other symptoms are similar to flu/cold symptoms so likely I would not have noticed, as I was frequently getting sick.

So. In my research, I have found descriptions of Lyme disease that has progressed far enough to involve the heart. It can also cause arthritis-like symptoms in major joints, particularly the knees. This interests me because I have had issues with my knees throughout my teens and up to my current age. No one has been able to figure out why my knees get swollen/fluid filled and I have been tested for rheumatoid arthritis, tests turned up negative.

It would also explain my immune system suppression. *Something* is actively suppressing my immune system, making me very vulnerable to illness. I’ve also just received some troubling results in my bloodwork regarding my liver, which could be related to this issue or to the chronic active Epstein-Barr virus, since I did recently go through a flare up of that.

My extra thick blood could also be blamed on a long term unchecked Lyme disease infection. Not to mention my chronic fatigue, but CFS seems to go hand in hand with just about every condition I have been diagnosed with so far anyway.

I was trying to make an appointment with the doctor who is supposed to be very good at finding hidden infections, but she is booked until December. I do not feel as though I have that much time. With my lipoprotein a levels *so* elevated, I feel like a heart attack waiting to happen. This terrifies me. I have been through so many diagnoses in my life, but this is the first one that is an active threat to my life. I am only 30 years old. I do not know how to process this information.

To make matters worse, I have told only a handful of people about this situation, but it does not seem as though anyone understands the gravity of this situation. It hurts so bad to think that the people I feel closest to do not have any concern for me. I had a panic attack the night before last just thinking about this stuff. I have not felt such despair in many years…the feeling that no one cares about whether I live or die is something I used to be very uncomfortably familiar with, but it has been over a decade since I felt that way until recently. I am feeling sorry for myself, which I hate, but I am lost here. I do not know how to navigate this territory. I am scared. It sucks to admit that, because I have been so stubborn and stormed through all kinds of trouble in my life, but to admit I don’t know what to do just terrifies me to my very core.

I’ve worked hard in life, I have accomplished a few things I never thought I would get a chance to, and I am proud of that. But I am not done. I do not want to kick the bucket just yet. I have so much more to do. I want to thrive, not just survive. I am done crawling through life… but I just feel like I can’t enjoy anything lately. I have forgotten how to have fun. I thought I got out of my depressive phase but I have not. I am still in the thick of it.

I am waiting on a call from my doctor to discuss thyroid test results since we have not tested my thyroid in a couple years. I want to make sure my medication is working. When he calls me, I will tell him my theory about the Lyme disease thing and see if we can do some more testing. I am actually hoping it IS Lyme disease, as then we would be able to move forward with a treatment plan. If it is not, then it’s back to the drawing board…and as mentioned previously, I am sick and tired of being a medical mystery.

I need some answers, some relief, a deep breath and a hug.

I’d love to hear from anyone who has or is battling Lyme disease, particularly if it is Lyme with cardiac involvement. I need to know if there is hope!

Advertisements

5 comments on “A little relief

  1. Katie says:

    Does sound worth testing. Hopefully, your doc will agree and/or the other place will have some cancellations.
    I only had some palpitations and they have improved since starting tx.
    Best of luck! Sounds cliché but try to focus on what you can control and steps you can take. 8)

    • Thank you! Yeah, when I called they said cancellations are few and far between but still worth a shot.

      I feel a lot more *sane* after writing this entry and having my panic attack… I guess maybe I was letting my emotions back up and just needed to experience them. I can’t give up now 🙂

      • Katie says:

        Nope. Glad you are feeling better! A blog is a good place to get everything out of your head and stop the spiral. At least it is for me. 🙂

  2. daisychic1 says:

    Hang in there! I went through seven years of chronically being sick and fatigued. Went from being a CPA to being stuck in bed 75% of the time. Finally found out that I had lyme disease. (Not cardiac) Going through symptoms, putting one in survival mode every day is hard enough. I think that perhaps the most difficult part for me was the” not knowing” — What exactly is wrong? How long will I be this way? Eventually decided to live life to the fullest of whatever my health would allow…without crashing.

    A little over a year into treatment, I am much better. I know how to better manage the symptoms that still linger.

    • Glad to hear you are in a much better place! I am still learning how to deal with the fatigue and pain of fibromyalgia even though I have been living with it for six and a half years now. If I do have Lyme too, I feel like I will be in a much better spot once that is being treated.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s