No luck

Well, the Lyme test was negative. This means I am still on the hunt for whatever is causing the infection in my heart. I have a few other ideas but will just have to be patient.

In the meantime, my emotional problems are beginning to take over my entire life, and I have recently realized I am in the middle of a fibromyalgia flare up. I have noticed an incredible increase in fatigue but that could be due to any number of things. It became very apparent when I helped clean up some branches and leaves after my dad trimmed up some hedges in my front yard…it was very light work, but I ended up in so much pain later that day and was even worse the next. It was so severe that I had to hide in the bedroom while the boyfriend and I were supposed to have company. I felt so terrible. In addition to my usual tense muscles, I had some extraordinarily tender areas (mostly chest and left hip) and numbness/tingling/pins and needles in my left hand/arm. I have been experiencing that last bit more and more frequently, and I notice my hands go numb now if I decide to read in bed. I am trying not to be too alarmed at this but it worries me with whatever is going on with my heart.

So…my doctor has made some massive changes and I will probably be undergoing a lot of uncomfortable adjustments over the next few weeks. He has prescribed me Cymbalta, which I have not had before. I have had terrible luck with other antidepressants, at least SSRIs and Wellbutrin, but I will give it a shot. It’s supposed to work for depression, anxiety and fibromyalgia so we will see if it helps any or all of those things. Sounds nice, if it works.

Because of the possible interactions of Cymbalta with Flexeril I have been switched to another muscle relaxer: zanaflex. I have no experience with this, but hope it works. Also, we are finding that one of my supplements does appear to be helping out my thyroid so I am cutting down my dosage of thyroid hormone which is nice. I was also briefly put on Losartan and now going off it, which is fine by me because it made me incredibly sensitive to sunlight. I found myself with sunburns when I typically don’t burn easily.

I feel so scattered and unfocused so I apologize if it comes through in this post. I have been feeling like I am losing my sanity. I have had moments where I feel so disconnected from me and who I am, typically when my boyfriend needs me to be emotionally present… and I just can’t be bothered. I just sit there, eyes open, not caring… I know he needs me to reach out and touch him, or tell him everything is okay, but I just…don’t. And it scares me. I feel like my whole being is just somewhere else in those moments, and I am just this human-shaped shell, incapable of caring. I don’t know what it is. All I know is that I really need to get back into therapy, but I just keep hoping for something to slow down. I wish I could just take time off work and focus on my health, but it’s just not possible with my finances.

When I read about Borderline personality disorder, I felt like I was reading an autobiography. There are a couple things that don’t apply to me, but so much of it does. I am not diagnosing myself, because I just don’t believe in that, but I believe that this is a breakthrough moment for me. I have always read a lot about psychology and never, ever thought I could be someone who suffered with a personality disorder. Why was I so quick to embrace the possibility of other emotional issues, but deny personality disorders? I guess even in the stigmatized, there are stigmas. It felt too “permanent” maybe, to me before. But now it is something to run past my therapist and get my shit figured out. I am so tired of living like this. It’s a shame my emotional issues had to go into full speed when everything else did, too, but I guess it’s all connected. Coming off depo and allowing PMDD to rear its ugly head was one of the worst decisions I ever made, but I didn’t realize I had that issue in the first place until all this started happening…so I guess it could be a blessing in disguise.

My doctor referred me to a hormone specialist but unfortunately, that doctor is not covered by my insurance. I’m on the hunt for another to see what we can get figured out. This is all the updating I have the energy to provide currently…thanks for reading.

Advertisements

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!