Posted 7/28/2013 11:14 PM (GMT -6)
This will also be my first post here on the lyme disease board. I usually post on the chronic pain board (I have chronic severe eye pain secondary to a nasty injury I suffered years ago), but I haven't even been posting there lately, because I have barely even had the energy to turn on my computer, let alone read, write, and reply to posts. This is a big effort for me, but I'm desperate.
Fatigue is nothing new to me, I've been dealing with some form of chronic fatigue for the past 10 yrs or so. However, the older I get, the worse the fatigue has become, and for the past 5 yrs, it has significantly impacted my life.
I am currently in the midst of my worst "episode" of fatigue yet. Things started going down hill in March. I don't know what changed/set me off. I routinely only get 2 - 4 hrs of broken sleep a night. I've had major sleep problems for my entire life, and have worked with a sleep dr, who diagnosed me with some kind of circadian rhythm disorder. In addition, I am a veterinary student, and so I am constantly under enormous amounts of stress from school. But none of this is new.
By May, my fatigue got so bad that I almost had to postpone my exams. I started feeling faint when I would stand up, and had trouble walking from room to room in my house, let alone up a flight of stairs. When I was younger I was a high level athlete, but was forced to stop due to injuries. However, since then, I had still maintained a very active lifestyle. When this began in March, I was in the best physical shape that I had been in in several years.
Even worse than the physical fatigue, is the cognitive manifestation. I am just so exhausted all the time. The only way to describe it is that it feels like my body is "shutting down" and I am powerless to stop it. I feel like a prisoner in my own body.
I have been home for the summer, and am extremely concerned and scared about returning to school in just under 3 wks. Whenever I am not working, I am in bed. Although I have difficulty sleeping at night, it is a bit easier for me to sleep during the day. I hate doing it, but there isn't much else that I can do. I feel like I have no control over my body. Even if I sleep for 5 hrs during the day, I usually wake up feeling no better than I did before I slept. And if by chance I do feel somewhat better, I'm lucky if it lasts for 30 minutes before I just cannot function again. It's terrifying. I feel like my quality of life right now is a 1 out of 10 at best.
I have had depression issues for a long time, but my depression was more or less under control when this all started. I do feel like it has gotten worse over the last few months, but I feel like the depression is due to the fatigue/my inability to function, vs the depression being the primary cause of the fatigue.
I swear to God that there is something physiologically wrong with me, but every doctor I have been to, and every test that I have had done has provided no answers or solutions. Likewise, alternative techniques like acupuncture and craniosacral work have only ever been minimally helpful at best. Stimulants do nothing for me -- I've been on numerous different ones, and at high doses, and I get absolutely no benefit from any of them. Likewise, sleep aids do not work for me, and many other medications as well, including pain medications and antidepressants. We do know that I have a genetic liver condition that prevents me from metabolizing many (if not most) drugs. But even those that I can supposedly metabolize yield no response.
I recently saw a new doctor, a fairly well known MD who practices integrate medicine. I liked him well enough, and he certainly seemed knowledgeable. But, like everyone else, he basically just characterized my situation as "extremely challenging," and didn't have any great insight as to the cause of my fatigue, or how to fix it. It was devastating for me to hear, because he was really my last hope. Most of what he suggested, I have already tried over the years & it didn't help. He thinks that I have "some kind of chronic fatigue syndrome" that modern medicine just can't diagnose. I don't fit the standard CFS patient as I understand it, because I do not have any other periodic flu like symptoms, etc. We are going to try IV vitamin infusions (Meyer's cocktail) once a week until I go back to school, beginning this week. However, we're really just doing them because we (my mom and I) requested it, versus him suggesting it. He isn't sure that it will help, or that any benefit I derive from it will last longer than a couple of days, but he did agree that it would be worth a try.
Anyways, I'm truly at my wits end. I just feel so horrible. I have no quality of life. Each day is a struggle, and each night I go to bed dreading having to go through it all over again the next day. I feel like I may as well be 85, not 25. I fought very hard to get where I am today, and am very scared that I will have to drop out of school for good because of this extreme, debilitating fatigue. Taking time off is not an option, as I doubt the school will let me. I already had to take a year off between my first and second semester of veterinary school due to a different health problem that is now more or less under control. I can't keep doing this "complete a semester, take a year off, complete a semester, take a year off..."
Neither this new doctor, nor any of my other doctors have ever brought up lyme disease as being the cause of my chronic fatigue (and I didn't think to mention it as a possibility before). However, having worked in the veterinary field for many years, in an area of the country where over 90% of all horses and dogs have at the very least been exposed to lyme, I have seen how powerful the disease can be -- both acutely and chronically.
I have had multiple "episodes" of lyme disease in the past, although they have never been severe. Although my last titer -- last winter -- was negative, being as that I've had lyme in the past (and I know that it never truly leaves your system), and I live in an area where lyme and other tick borne diseases are rampant, the thought crossed my mind that maybe this is chronic lyme disease.
I must admit, my knowledge of how chronic lyme affects humans is somewhat limited. I have tried doing research about it, but because of it's controversial nature, it has been hard to find solid information. I guess that is where I was hoping you all could help. I don't know that I fit the profile for chronic lyme: I certainly have all of the fatigue issues that it can cause, but I don't have achy joints or headaches, or anything like I've had in the past when my lyme has been "active." I'm not sure how to go about potentially treating this/finding a doctor who would be better able to confirm or deny my suspicion of chronic lyme, and know how to treat it if it is (would the treatment just be a course of doxy, or something more?). I know that there are some doctors out there who are more educated about this than others. Anyways, I would really appreciate any help or insight you all might have.