Hi I have been reading this board since I was diagnosed with neuro lyme in Aug. I had been diagnosed w lyme in 98 and treated with Mepron and Zithromax for 4 months. Seemed to get better and continued with life. in 2003 after back surgery was diagnosed with MS. Symptpms went away until o4 then variety of neuro symptoms plus extreme dental problems and wnt back to my llmd and sure enough the wb and other tests cam back positive. Went on IV rocephin for 6 weeks and followed that with IM bicillin shots and oral abx. Over the holidays ihad horrible fevers and pain out of nowhere. then symptems subsided and just went into another round of really bad symptoms on Jan 23.
I try to be hopeful but I really get depressed when I feel like this. I know others have it so much worse but I feel like I will never b e able to work again or even plan anything. My family was sympathetic at first but now want to know when I will be back to my old self. I tried to educate them but it hasn't seemed to work. I was in a very high pressure job, as I am sure many were, and can't imagine keeping all my medical appts much less working in any capacity. Some times I do wish it would all just end. I hope this will pass but each "episode" gets worse. Reading this board has been so helpful to me but today I was so desperate I had to join and post. Thanks for letting me vent.
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hopelives, Hi! Are you a relative? I don't post or come by that often, but I felt compelled to do both.
Getting support/understanding from family is a tough one for most of us. My daughter also has Lyme, but sometimes she doesn't want to hear anything but good news from me. I can get into the depressed, scared thing almost at any time, so I also can identify with that.
Don't give up on treatment or getting the understanding you deserve/need. That's it.
I needed to write this for me as well as you.
I'm sure other, more articulate people will respond.
Hey there, Try and remember this....the lyme can cause anxiety and depression....I've had ample traumatic events in my life but always managed to bounce back on my own....pre lyme disease...or at least before I listened to ducks and got worse...anyway....I'm doing better(not cured) better with the depression and anxiety(worry/scared all the time)with lexapro...it's an ssri.....you may need one to coincide with your abx treatments...
I can empathize with you and hope you'll get better...keep on keepin on...yeah I know it's tough at times.... LOLove....zman
Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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I've been where you are at many times. I take an anti-depressant now. Effexor. Works on both depression and anxiety. I think a lot of the fears and worry come from the unkown nature of lyme disease. I just joined this board today too. I post to another board as well, but this one is much more active. Maybe you can talk to your doctor about medication. It really helps. There are so many positive outcomes of lyme, I think we just need to believe every day that ours will be positive too. It will. IBelieve
Posts: 48 | From New Hampshrie | Registered: Jan 2005
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Thanks for the replies. I didn't even realize it but my family is only used to good news from me. That's all they hope for and that is all I have ever given. I am one of the two heroes in our family. Usually can fix everything. Especially if I minimize what is going on with me. As a matter of fact it was seen as great news that it wasn't MS. I am not so sure any more.
Posts: 5 | From ocean , nj | Registered: Jan 2005
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Hiya, Hopelives. As a friend of mine says, 'I feel the knowing.'
Sometimes I think if we ever get well we'll be like Superman, acclimatized to the freakish gravity of this illness. Maybe that's why in the comics I read as a child Kryptonite is always that dayglo shade of Lyme green.
Two days ago I was in so much physical and emotional pain I didn't think I'd make it through the day. My usual sources of support - all fellow patients, who know what this is like first hand - weren't available and I called a family member who was busy with something else. On a good day, this person can process enough of what I'm going through to manifest some empathy, but this was not a good day.
The feeling of being isolated, in some hell-dimension reserved just for you, about did me in. Made a note to myself: 'do not turn to well people in a crisis, they are not to be depended on.'
Sounds very harsh, and of course there are happy exceptions, but I'm afraid a lot of the time it's true.
dea hopelives, glad you are here. keep coming back. definately know what you are experiencing. the details are different, but I think the overall sense of loss for us may be the same. we are grieving. i was in a very bad place last week. actually thought I might not make it through the day (last monday). climbed out of that hole; had a few marginal days and now I feel like i'm going back down again.
I wanted to share my last post. sometimes I write not just to vent, but to try to get others to validate my experience. I think that If I hear from just one person who "understands" it makes me feel less crazy - at least for that day. at least for today, i hope that i can give you the inspiration to get through another day - just as you have given me!
Best of Health Paisley Frequent Contributor
Posts: 126 From: Registered: Nov 2004 posted 23 January 2005 17:03 ------------------------------------------------------------------------ I haven't logged on for a while because I kept spiraling down in the last few weeks. I began to feel more and more idle, powerless, ineffective and the most recent symptom that I am finally acknowledging is that I am losing my eyesight. I began to wonder "How much do I have to give up for this disease?"
Additionally, my children are having all kinds of health and behavioral problems (we are now in the process of testing them for lyme as well). I began to focus on how I feel llike such a poor mother, wife, friend and daughter.
I had been working with a therapist who I thought understood what I was going through. As it turned out, she was just another dr. who doesn't understand the lyme dynamics, especially regarding herxing cycles and depression. Except this was more damaging because I put my faith in her to help me with all of craziness that goes with having lyme.
When I became very depressed last week, she said, "what are you doing - your husband has to work" and that I should check into a hospital. She told me that she needed to meet with her that next day. I felt like I had been reprimanded by her and suddenly I became angry because I felt like she was protecting my husband over my well-being.
She saw my husband as the calm, focused, agreeable and pleasing participant and viewed me as the irrational, forgetful, unreliable (missed one appt. because I forgot) "hysterical" participant because I was the one on the couch crying for help in the past year.
I finally let my anger come up and my therapist thought it was inappropriate. What? Isn't that part of her job - to help me process the feelings that come up with having a chronic illness?
I was asking for my husband's help and she kept saying well, "he has to work and you need to stop being so demanding or he will leave you" Oh My G--! I walked out of her office.
I refreshed my desire to leave this planet in that moment. I seriously considered it and suddently felt like I got a sign from above. I began to pray and realized that God has me right where I am supposed to be. I don't like it one bit. Our existence (especially for those with chronic lyme for years) is so challenging. People just don't understand the pain that we are in.
Again, I put my faith in a dr. who then viewed me as a headcase. And, I know this will sound absolutely crazy, but I definately believe it based on her behavior and some of her remarks - I believe she started having some attraction towards my husband.
Meanwhile she wasn't able to look at our situation clearly and I didn't see it sooner because I have been so wimpy, sobby and foggy. I know that she would say that it is just paranoia. Instead of trying to really understand my disease and all its bizarre nuances, she sat back and started making incorrect assumptions that actually did more damage.
I never questioned her methods because of my fog and would not have questioned any of it because she was in the position of power as my therapist.
I still feel so vulnerable with this disease, but this experience, along with all of the other debasing experiences with drs. has given me more strength, resoluteness, determination, resolve, perseverance, earnestsness, backbone, fortitude, grit and doggedness...at least for today.
I hate to say, I know the feeling, but I am one of the liveliest, craziest (but in a funny way), vivacious person, spur of the moment, lets go away, ...The last few months, its been lets be put away. I eat, drink, sleep lyme. Trying to be the person I used to be, I am nothing. I have a son who has lyme on abx for 2 years and a sympathetic husband, but how much can someone take. God gave me a taste of life over last weekend. I cried, because of it was a tease, knowing it was only a day or two. I had to get off zoloft,ended up in the hospital 2 weeks ago, sodium dropped to danger level. There for 3 days - not even afraid barely recognizing my family, who I adore. They thought maybe the zoloft was making the sodium drop. Went back up to 138 - going down again to 134. Had a spect scan yesterday to see if lesions are there. I too don't know what to expect in the next 5 minutes. I planned every aspect so I thought, until I don't know me or loved ones. I hate to say there's a reason for this, maybe there is no logical reason someone should be in this much pain, physically and mentally. For whatever reason, I guess we have to keep on going. The serenity prayer used to get me through. Now I feel lost with that too. I take tranquilizers to get me through the day to teach (2 days a week music to little ones) for only 1 hour each and religion. There has to be justice somewhere. I know I'm not the only one, but know you are not alone. How can so many people be debilitated by this? I ask all the time, but there has to be a light. Have to get my 9 year old up for school. Take my heart, thyroid, tranquililzers to go to my iv to find out I'll be taken off to raise my wbc and sodium that keep dropping. Put on orals for a week, then come home to go to sleep and wait for the next day of hell. Herxes the last 2 nights, dizzy, spots, holding onto the wall...v-tac :irregular heartbeat...need I go on? I wish I could be of some consolation, but my 2 sisters, son and neice have this and are on treatment. God, I know you see all, please see the pain that everyone is in and help. There has to be light - everyone on this post is here for a reason.
God bless, good luck and I know that it has get better.
I like your UserName. You picked it for a reason...because you DO believe in hope.
You do have HOPE and phenomenal INNER STRENGTH inside of you...even when you experience situations when you can't feel it or recognize it.
Sometimes I just have to blindly trust that "this too shall pass" and remember that I AM more than just a mass of cells & tissues infected with some mean ass bacteria.
Life can be a struggle...and you don't have to compare your bruise to anyone else's to see which one is the bluest. Yes, some are "worse" off than you - and many others aren't. Many people seem to be "living the good life" and like to flaunt it. (But their grass is not always as green as it appears.)
I believe life is full of challenges because it's the challenges that force us to LOOK WITHIN & find that HOPE and INNER STRENGTH - to remember in whose IMAGE we are made. Don't give up!
Now that's my best pep talk for today.
Just know that the people here on these boards can certainly identify & validate that everything about lyme pretty much sucks! (Can I say "sucks" on the boards?)
For me, it is comforting to get that validation where I know I will get it. And like someone else suggested, you're not going to get that validation from your healthy friends & relatives -- at least not very much. For me, I like to write & get all my piss & vinegar OUT of my body. (Can I say "piss" on the boards?)
You may be aware that stress - in ALL it's forms - is not good for your immune system -which is already struggling thanks to the lyme. So find something that makes YOU feel good emotionally & that will help you get the stress, confusion, anger, etc. out of your body.
And finally, you might ask your doc to check your hormones and consider an anti-depressant.
Prior to Christmas, I thought I was going to lose my mind - DAILY. My PCP said my progesterone was really low and prescribed a cream which I'm practically bathing in. (Not sure about the long term safety of this...)
Anyway- if it hadn't been for the progesterone & the anti-depressant, I don't think I would have been able to keep my compusure when my father-in-law asked me at dinner if I was sick all the time just because I needed the attention.
Yes, I believe it was the progesterone & the antidepressant (& a little bit of fatigue) that kept me from crawling over the table to rip out his tongue & rip off his testicles. (Can I say "testicles" on the board?)
Hopelives - WE "get it".
Keep coming back.
------------------ DR. Wiseass - not a real doc - just a real wise ass. www.twistoflyme.blogspot.com
Hope, I"m so sorry. It's very hard to get family or anyone to understand. I've come to the point if someone asks how my son is doing I say "you'll never understand unless your living through it". I think this is very true. I"ve given up on trying to explain Lyme to family. They still question it after 9 months, and ask when he's going to get back to school. My response always is when he gets better and school is my second priority. His health is first.I tell them to come over and put my shoes on for a day. They won't. I have just ordered two videos from Time for Lyme. I can only hope they will watch them Hang in there. Maybe ask your doctor for an anti-depressant. I never thought I would be on one but watching my son go through this and being his constant caregiver I really needed one. Ended up crying on my doctor when I went for a visit. It has helped me and I know an anti-depressant has helped my son get through this. giftiflife
Posts: 30 | From MA | Registered: Jan 2005
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Believe, Thanks for the reply. I will be contacting you. Not only do we share the same LLMD but I am an x-(your current job). TTFN giftoflife
Posts: 30 | From MA | Registered: Jan 2005
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