really, really down

Oh sayyadina—
I am so sorry you are feeling down today. I am too so I was compelled to respond. I understand absolutely everything you are feeling—and I bet most others here do too. I am completely alone and have been for quite awhile, thanks to this awful condition. I feel exactly how you're feeling and it's awful and destructive and leaves you completely paralyzed.

But you WILL get better. You don't have all the answers right now, but you will work through this and you have everyone here to help you. I wish you could find the right LLMD—it's not easy but he/she is out there—the right matchup for you. I was lucky and had 3 in my area to choose from and I hit the jackpot. If you were closer I'd refer you to her. But there are also some incredibly brave posters here who are treating themselves. I don't know how they're doing it but they are—and I'm sure they would help you. Please reach out for that help.

You are so smart to post when you're feeling this way. My illness has zapped my brain function and now I'm a little asperber's and I have a real hard time reaching out when I should be…

Please continue to post and talk through this. I'm sure others will be along soon to offer great advice and commiseration. We need that so desperately. When I am feeling like you are—I find something else to focus on. Because underneath the infection is YOU. You are still in there—you just need to heal and move on to your next life. I understand your frustration about how much you're missing out on in life—I missed ALL of my 30s. It's shocking to think that—and my 40s will be mostly over before I'm well. Remember that you are so so young and you WILL see the other side of this and move on to a beautiful life. It ain't gonna be easy but few things in life that are worth anything are.

Again, hang in there--stay close by and continue posting. We're all rooting for you!

-p

I'm so sorry that you are young and going through this. I was very ill with a mystery illness, right after I finished college and I was bedridden for a year. Not really sure why I was so ill back then but I was diagnosed with fibromyalgia at the time. I couldn't lift my head off the pillow, that's how bad my neck pain was. It's heartbreaking to be sick when you should be out partying with friends and having fun. I missed a whole year of my life too, for no good reason.

Mine went into remission. I got a good 20 years and here I am sicker than ever, with lyme and mold issues.

But you have to keep going, you really can get well. I've been sick for 9 months, really, really sick. I'm just doing detox baths, vitamins and minerals supplements. Got the mold out of my house, and my health has come back a little bit but I have a long way to go, it's like baby steps. I can't do lyme treatment until I detox some mold.

I went from power career to like crazy lady literally overnight. Lost my job and had to be babysat. My family thought I went over the edge. I was spending my day pacing, that's all my brain could do.

I took one medication that crossed the BBB and set off a toxic firestorm in my brain. Must of had years of lyme and mold toxins so bad that got stirred up. That's all it took for me.

Now I'm trying to claw my way out of the hole and you can too. Don't give up.

Louise74—
Oh yes, forgot about "career". I was doing quite well—had worked very hard to achieve my position and I, too, had to quit and step down. The toll continues, right? I'm keeping track. This will all not be for nothing, I guarantee it. One day… one day...

Sayyadina—
…wanted to add that I missed 15 yrs because of a lack of diagnosis or proper treatment. YOU are young and know what you're dealing with and have these resources to help you NOW—not 15 yrs from now. You will lick this in a matter of time and will look back on it as a distant memory. You will prevail!!

Why don't you and LP think you will get married??? Marriage is a long ways off... ;)

-p

Sayyadina—

You are mired in your current situation and the emotions that are frankly, part of the illness. They are certainly real in that you are experiencing them—but they are not who you are. It is the nasty infection. I think everyone can identify in one way or another. But take it from someone who is a lot older, you have a LOT of really good years ahead of you. You have NO IDEA, really, what life will bring you. And you will have a different perspective once you are healed. Guarantee it… and it is just down the road a ways. But I really urge you to find an LLMD. You cannot give up at this point. You need professional-level support. All of us do in some way. Don't worry about trusting the Dr just yet—trust yourself. Trust IN yourself.

There are many lymees who are married to healthy spouses and have healthy children. Knowledge is power. I really do understand your grief though—I question my future as well (but I am likely past child-bearing age with no partner, thank you lyme). I'd give anything to be 20 again. You have a great likelihood of licking this and getting right back into school and life's rhythms. It's not going to happen overnight… But for a 20-yr old—you have MOST of the rest of your life to live.

Focus on today and getting better and think about things that make you feel safe, comfortable, happy, encouraged, spirited, and connected to the world around you. I am thankful to be able to tolerate watching videos on my computer and a friend gave me access to his online cable tv account so I can watch just about anything online (I don't have a tv). Right now, I'm on a civil war kick so I've been watching a lot of stuff like that. And I used to be a dancer (thank you lyme) so I like watching the So You Think You Can Dance reruns… Silly stuff that keeps my brain occupied until I am thinking and feeling more clearly. Do you have a hobby or interest that you can manage that can also hold your attention?

Again, it's good that you're posting… stay engaged.

-p

With this crazy disease, at times we all feel depressed, worthless and like we're a burden. But by posting your good days, bad days, ideas and experiences you are helping the rest of us! Hang in there.

MM— I agree that was a great post.

Sayyadina—

EVERYTHING in your posts make total sense and I completely identify with it. I'm not fresh out of school but… I feel everything I worked for in school and in my career is shot. I'm an architect and an overachiever like you are, I suspect. So a "normal" 9-5 job was not in my future. I worked very, VERY hard to achieve what I have to make a significant career out of my profession and I had a nationally recognizable position and was on the cusp of a whole other level when I started getting really sick. And I had to leave it last year and who knows how much time will be lost when I return to my profession.

You were JUST getting started and had it all yanked out from underneath you. Life shureascrap ain't fair sometimes. And worse, you barely got a foothold in college or with all these awesome plans you had. I really hope you continue to keep your sights on finishing school (really??? three majors???), learning hebrew, healing all of us with lyme when you become the country's preeminent and unaffordable LLMD… ;) It is so critical to keep your sights set a ways in the future (rather than on the frustrations of today), kind of like how when we first learned to drive we would stare at the pavement right in front of the car but as we gained more confidence we could focus more appropriately at a certain distance into traffic, which kept us from hitting everything!

I've been reading about the in utero treatments. A lot of recommendation for Arithromycin? I wonder what that does to the baby's immune system, too. But hey—by the time you get done with tx, get through 19 yrs of school (really??? three majors???) they will have a cure for and certainly a more appropriate preventative approach during pregnancy. The reason I know this is because I have been fired up ever since diagnosis and I vow to impact change in this whole situation when I'm well. And I have no doubt that on the other side of this hell, I will be well. And the other reason I know this is because you will probably do your dissertation on curing lyme & co. and researchers will be clambering to work with you. That's how it's going to happen.

I have not watched myth busters but I am weirdly drawn to ghost stories. I don't understand that. And when I mentioned I was watching the Civil War series, I glossed over the fact that I can't retain any of it and found myself watching one of the episodes four times one day… oh well, it's something to do and keeps it from getting too quiet around here.

To do yoga is so amazing. I used to be able to. With the joint & muscle pain I can barely move around. I miss that—there is so much healing involved in yoga, physically, spiritually. Keep it up as long as you can.

I totally relate with not being able to remember the things that are supposed to be helping you. For 5 days a week or two ago, I literally forgot my protocol (the herbs and detox protocol). I was so out of it, I forgot my meds, too. I'd had an appt w/ my LLMD and we finally figured out what was going on and why I felt so crazy. It made me feel better that at least some of the herbs are working in small ways—I didn't think I was getting any reaction to them at all, which had me quite worried. I mentioned I needed a manager in another thread—I really mean it. I have everything written down but if I don't remember to look at it or my schedule, it does me no good. One of these days, there are going to be services like there are for cancer patients and lymees like us will have help.

Hang in there—love that you're posting. You have an interesting and unique writing style—very articulate and descriptive. That is awesome. Lyme & co has stripped me of my creativity, I'm afraid. So disheartening. I'm trying to post more often too, when I can. It does help.

-p

Sayyadina, maybe you should go back to the person who gave you Lac Caninum in case you need a different remedy, although I looked it up and it still seems to fit. I've been on that one before, but now I need a different one for when I get depressed or other problems. I've been on the same one for a year I think and just keep going up in potency until it no longer makes a change, then I have to switch to something else. I need to go back to her and see what I need next.

I hope you do find something to help give you a boost. Depression is tough to go through.

Awesome that you've had some better days! I hear you on overexertion… it happens for me so easily and I don't read my body well anymore so I don't stop when I'm feeling that I've pushed too far. Then I lose 2-3 days trying to recover, if not more. Aggravating, especially when you're used to going 200mph all the time.

My moods are all over the place, too. At times they change on a daily basis. I agree—I believe it's due to the 4-5 day and 4-5 week cycles of Bart/Babs/lyme… and whatever else is going on. It encourages me to shy away from people, relationships. The internet is such a great outlet for us since it allows us to engage only when we're up for it.

My "game-changing" writing class was a course I took my freshman year in college. Unfortunately, the advanced classes in high school that I took had skipped over a lot of fundamentals that I didn't realize I never had until I got my first D on a paper in college. Luckily, the instructor was awesome, tutored me to catch up quickly and I aced every paper after that.

School was pretty tough for architecture students — psychologically and physically. I can't imagine having gone through that sick like you are. I was so hardened and bitter by the time I graduated (I was in a 5-yr program but took me 6 because I transferred to a different school and I also minored) that I wanted nothing to do with architecture. Sad. But I got over it. Got into the business—loved it for about 10 yrs but the business part of architecture sucks all the creativity and spirit out of it. AND—the lyme & co. has left me unable to think and create like I used to so I've come to hate my job and profession. I stay sane by doing a lot of volunteerism in other areas of the industry, which is really awesome. I am still hoping to hang on to some of it even though I can't work right now. But the difference between what I used to be able to do and what I can handle now is shocking—not just in volume but my brain simply doesn't cooperate, like you were describing. It's awful. After everything I've worked so hard to create.

Caring for your brood has to take a lot of time and energy out of you. But hope you get to ride often… that would seem CATHARTIC just to be around them but especially to ride them.

Andrew—
Great quote. I went through a space race phase awhile back. I was an infant during the actual events but really got into reading several books and watching documentaries a few years ago for some reason. Your quote also reminded me of two other quotes, "With all due respect sir, I believe this is gonna be our finest hour" in response to the Apollo 13 crisis and "failure of imagination" stated in response to the Apollo 11 fire. I think about these when I consider the trials and tribulations of being a lyme & co. patient…

-p