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!

New supplement to try

Have any of you ever taken Lauricidin? My doctor recently suggested I start on it as a long term thing to attempt to help battle the Epstein-Barr virus. I just ordered some on Amazon and started today. I was told to start slow and work my way up to a full dose, and from what I read, it is to avoid the Herxheimer Reaction (which is something I experienced while treating the parasitic infection I had – the die off of the parasites was happening quicker than my body could flush out the toxins, which resulted in waking at 4 or 5am covered in sweat, with terrible stomach cramps and high fever…would like to avoid ever feeling like THAT again). I am reading some promising things on Amazon but would like to hear from others if anyone has anything to share. I hope this helps me.

Still trying to track down what is causing all the signs of infection/inflammation in my bloodwork. I’ve finally come out of a depressive phase with extreme stress/anxiety and can try to get things done again. I emailed a doctor who my doctor referred me to who is supposed to be really good at nailing down causes of inflammation in the body. He’s stumped. I’m glad he did make a lot of progress with me, because it was SO overwhelming for so long to just hear doctors continually call me a mystery or a “complex case” but not make any progress!

I also just got my medical marijuana card in the mail yesterday. Looking into making some salve with cannabis oil for my muscle tension, pain and the painful cramps I get with PMS. I’m new to all of this so I need to talk to someone at a dispensary about what strain(s) would be best for my conditions. I just find it all fairly intimidating, especially with the spike in anxiety I was feeling.

The sun came out for a little while today and that certainly helped improve my mood and energy levels. My boyfriend and I had a great talk to the other day too after another fight left us both in tears and I think we are getting to a point where we understand how to properly support each other. We both come from a background of abuse and trauma, there is a lot of pain in both of us. Our issues had been pushing each other apart instead of bringing us together like it should. I’m feeling better about things.

I had decided to go back to therapy also since my therapist told me she would do sliding scale for me once I discovered my out of network deductible is too high for me to ever meet in a year ($4500) meaning I was paying $220 a month for therapy which I just can’t do with my really high mortgage I am paying on my own and all my other assorted bills, loans and healthcare costs. Unfortunately, she can’t afford to see me for what I can afford so I might have to wait until I can spend more or hopefully we can work something out at least for one meeting a month. She’s still only working two days a week (recently back from maternity leave) so we’re both having financial struggles at the same time. At least I am starting to feel more stable though I haven’t seen her in a few months. And even then, I’ve barely seen her for the past year because of how long she was on maternity leave. Maybe I am doing better than I thought.

Hope everyone is doing well!

Anxiety through the roof

I don’t know what is affecting me lately but my anxiety has been sky high for the past few weeks. I don’t know if anyone else is like this, but basically I keep this ongoing list of things I need to attend to in my head (this can be as simple as going grocery shopping, responding to an email, etc. to something much bigger like…well I don’t know, scheduling something that’s super important) and if anyone tries to push me harder to attend to one of those things on the list, the more it overwhelms me. And that’s where I am at right now.

I think part of it is financial stress. I was lending money, more than I felt comfortable, to my boyfriend and this was stressing me out… but I felt as if I *had* to keep doing it. He’s paid me back all of it and a little extra and I feel a lot better now, but there is still this weird looming anxiety over me. There’s a lot going on but there is always a lot going on. Part of it may be the newest labs. I don’t really know. But now that the boyfriend will be on his own financially, I am able to focus back on my priorities. I am living beyond my means at the moment which is always scary. I just bought my first house in November and now I’m housepoor. I’m continually paranoid that something will happen to my job or something worse will happen with my health and I’ll lose everything I worked so hard to get. It’s hard not to think that way when I just watched this happen to a friend (who eventually passed away in October after losing his house and going bankrupt by medical bills).

The past couple weeks have been particularly difficult as adjusting to hormonal medication is never easy and with everything else going on, I’ve felt like tearing my hair out. I had a bad argument with my boyfriend and I’ve lost all patience for conflicts like that. There is nothing productive about casting blame, raising voices, etc. so I just gave up and said “I’m done” over and over again. He took off for awhile and I had some time to think about whether or not I cared if everything just ended right then and there.

Frankly, I am used to going about life on my own. This makes it difficult to let people close to me. Also with my history of letting the WRONG people close to me, I do worry about making those choices again. I love him, but I don’t *need* anyone. It sounds even more cynical now that I have written it out… but honestly this is how I feel. I have such little desire for this kind of drama. I have no energy to dedicate to it. So now added to my long list of “to do” items is to have a serious discussion with him about who I am and what types of things really strike nerves that I’d rather not be struck. While he and I originally met over a decade ago, we didn’t truly get to know each other until recently, specifically the past five months. He’s new to dating someone with chronic pain/illness and some incredibly insensitive things have been said. I lost my temper. I really feel at the end of my rope lately.

Perhaps related, twice in the past couple weeks I have noticed some extreme flushing of my throat and chest. This is new to me, so I don’t really know what’s causing it. Perhaps the stress/anxiety is getting so bad it’s causing my blood pressure to rise? I’ve almost always had low/low-normal blood pressure. But I also fear things may be different now that I have received these results in my labs with the incredibly elevated lipoprotein A levels… I am talking completely out of my ass here, because I don’t know enough yet about how/why these levels are SO high. It scares me though, because I have a few items in my labs that point to increasing risk of developing blood clots, stroke or heart attack.

I feel quite a bit out of control of the situation, as my cholesterol levels are fine. There doesn’t appear to be much I can do about the way things are right now. Also, I think I have experienced a flaring up of the Epstein-Barr virus. I think I noted in a previous entry that those levels were higher than normal on my latest labs as well. For the past week and some change, I have had an extremely sore throat, swollen tonsils and pus on my tonsils/back of my throat. A doctor I saw was so convinced it was strep throat that I was given antibiotics before the culture results came in. When they did, it was negative for strep and determined to be a viral infection.

I’m starting to wonder if I should just push to have my tonsils removed. I tried years ago but now a couple practitioners have tried to steer me away from that, saying the risks outweigh the possible benefits.

Yesterday was a bit rough but I ended up meeting up with a friend I haven’t seen in years who was just recently diagnosed with fibromyalgia and chronic fatigue syndrome. I talked to her a lot about treatment, symptoms, etc. and let her know I’m here any time she needs to talk, because I GET it. If I could just find a job being some kind of advocate for people going through these things, I would be SO pleased. I just really want to help people so even if it seems I have made at least minimal impact, I’m happy about it.

I’ve exhausted myself just typing this entry… more at another time. If anyone has favorite stress relieving tips, I would love to hear them!

Active Epstein-Barr virus

One of the troubling items I have noticed in my blood work over the past year is a fluctuation with the Epstein-Barr virus. For those who are unaware, this is the virus that causes mono. I had mono when I was 18 or 19 and usually what happens is the virus goes dormant, but will show in blood work. However, the levels have changed over the course of three or four different blood tests which suggests this virus is still active. Does anyone out there have any experience with active Epstein-Barr virus? I’ve read some things, but you know how reading about medical stuff on the internet can go. I don’t want to induce a panic attack for no good reason. I am wondering though if this is to blame for some of my fatigue and maybe some of the other indicators of infection in my labs. There are a few things pointing to inflammation or infection in my body that my doctor and I have yet to nail down. So, anyone with any information out there for me regarding Epstein-Barr?

Observations & answers

I have been feeling quite a spark of hopefulness lately. The other day I had a followup with my new doctor, who is a fibromyalgia and chronic fatigue specialist. He went over the loads of blood, urine and saliva test results and my MRI. It turns out the disc bulge I assumed was gone five years ago is still there! The good news is, this is treatable without surgery and perhaps I will notice a marked difference when it is taken care of.

There were also so many things that showed in my results that I simultaneously felt completely overwhelmed and grateful for a doctor who could finally sit down and pick all of it apart. I have had so much bloodwork done in the past, but probably never a doctor who was willing to go this in depth with the results. I think a lot of doctors are fine to dismiss something as not a problem as long as you fall within the “normal” range for something. However, my current doctor will point out to me when something is in the normal range, but on the high or low end, and how that could be a problem. Or, not necessarily a problem, but something that could be better, that we can work on.

How cool is that?

At my previous visit with him, I had learned about the possibility of Epstein-Barr causing chronic problems. I had absolutely no idea. I did have a rather vicious run in with mono about ten years ago. I never thought the virus could still be inside me and actively causing problems. The blood test results proved that indeed it is. I have read there is a link between Epstein-Barr and chronic fatigue syndrome. No wonder.

He also told me tonsils can retain all kinds of nastiness and luckily he has a plan to reduce the issues I may be having with my problematic tonsils. I bet they also play a part in my sleep apnea (of course they do)! Ever since the mono attack, my tonsils have been content to flare up at any sign of illness. Even though I had multiple instances of tonsilitis, no one would remove them. When I had mono, my tonsils were so severely swollen that they were touching each other, covered in blisters/pus pockets and so painful I was unable to eat for about a month while the illness lasted at its worst. My liver and spleen also were engorged with blood. Which leads me to my next statement…

It appears my liver and kidneys are having trouble functioning. It also appears the parasites I was fighting last year are still in my system, when a previous doctor had come to the conclusion that they were gone. My eosinophils are still very high, and my doctor says that is a sign of the parasites being in my tissues and/or organs, causing potentially large amounts of havoc. So instead of the natural items I was using before to battle them, I will be using prescriptions, which I am picking up tonight from the pharmacy. I’m a little worried, especially with how sick I got when I was fighting them last year, but he has given me some supplements to aid my detox so I can hopefully get all the toxins from the die off out, even though my liver and kidneys aren’t so great at their job.

My lymph system apparently could also use some help, and my immune system is struggling. No surprise there, as I just spent three months battling a very bad illness that actually required me to get a note from a doctor to get five days off work. Five days weren’t enough but it was the best I could do.

Also, my blood test results led my doctor to point out to me that my issues are *almost* as severe as many of his patients who are on disability! I pride myself on my ability to get my work done and done well, but it is VERY hard most days!

My thyroid, while functioning quite well, is apparently putting out more of the stuff that makes me want to sleep and put on weight; hibernate, basically, and not enough of the good energy I need. So I am now on a thyroid pill to help balance that.

My cortisol levels crash in the evening. I’m on another pill for that.

My estrogen levels are that of a healthy 60 year old woman. For a 29 year old, not so much! I am glad I made the decision to come off depo provera. I have been on it for 10 years, I want to start with a clean slate and get my hormones balanced.

Last but not least, he has plans to work on my stellate ganglion. He had to explain to me what this is. My anxiety is probably due to the fact that my childhood experience left my body in a fairly permanent “fight or flight” mode. This is possibly also the cause of my Raynaud’s syndrome. He has a plan to help with this as well, plus I am in therapy.

So. Those were all the answers I received. It left me reeling and feeling very unusual as mentioned. I have been incredibly moody as well, likely due to coming off of depo.

I noticed something funny because of this. Friends who have never really understood what I am going through suddenly have something click into place when they hear I have been diagnosed with a problem that someone they know and love has been diagnosed with. Usually a parent. This happened when I got my diagnosis for fibromyalgia, and again when I was diagnosed with the active Epstein-Barr virus. It has served to remind me that not all people are capable of understanding just by what I say. I think a lot of people, not all, but some, tend to assume I am exaggerating or just not taking proper dosage of vitamins or whatever. Maybe they don’t realize how much of my “free time” goes to appointments. Maybe they don’t realize how much of my money gets funneled into my healthcare. I truly am trying to better myself because I can’t imagine living like this forever.

I am an incredibly sensitive and empathetic individual and I have to remember not everyone is capable of understanding these things as easily as it comes to me. I don’t want that to sound egotistical, because I don’t mean it that way. It’s simply a difference that I need to come to understand and not be hurt by.

I was *so* grateful I had a therapy appointment scheduled in the afternoon after my follow up at the doc. I could have used another hour though!

Here’s to answers, friends who understand, and moving forward…progress!