Just before I became unwell, I became very depressed. I had never suffered from depression before and for those who have never had it, are very lucky. I was put on to anti-depressants and remained on them for 4 and a half years. I certainly didnt remain depressed through being unwell, although the neuros seem to think I am depressed because I am ill. I beleive I cope very well with what is going on and have always been a very optomistic person and positive through it all. I have accepted that things have changed in my life and whilst I may not always understand or like it, I have to get on with it. I came off my anti depressants over 6 months ago and have got on great without them. Suddenly out of knowhere I can feel myself slipping again. Depression is a very hard thing to describe. I feel worthless, lonely, guilty, sad and totally flat. Can anyone tell me please, do people with Lymes suffer from depression? I have everything to live for, a wonderfull loving family, who understand and care for me, I have literally nothing to be unhappy about, but I cannot shake this off and it scares me. I dont want to go down this path again, its lonely and just a horrible place to be. Im getting anxious again and paranoid and even though I can see whats happening I cannot control it. I do not want to go back on to medication, I want support and alternatives and can anybody else relate to this?......
Hi Topsy. I'm assuming you have been diagnosed with Lyme already?
You have really described depression beautifully. That is exactly what it is.
People with Lyme suffer significantly from depression. Our bodies should have the ability to communicate easily cellularly.
Chemicals like dopamine and serotonin need to flow freely without toxic interruption. Anyone with Lyme has toxic interruption on a cellular level. These chemicals can't be released and received by the appropriate axons because toxins that do not belong are in the way, blocking normal nerve impulses, exchanges of nerve chemicals
When I imagine this in my mind I picture a couple sitting looking across at each other in a visiting room in a prison. They can see each other clearly but they cannot feel each other even though they can touch hands against the glass. The pane of glass interrupts their ability to feel each other. "Feeling" and "Seeing" and so different.
Most of my life, I was ignorant about feeling. I did not understand when I heard people were depressed. I thought it was a weakness. I thought anxiety was a weakness. I suffered with these symptoms for twenty years and each year it continued to get worse. I chose to deny I felt them.
I felt alone, I avoided people and was even anxious just cashing out at the register...like I was being watched by a thousand people with my clothes off.
I always felt like I was about to be fired or as though something bad was going to happen..bad news or just something was wrong.
Some people seem to have luck with the many meds out there but I never did..they all seemed to increase my symptoms.
I know as I am being treated and the bacteria are dying off, these feelings of hopelessness and nothingness increase....as do all of my other symptoms. It is a part of recovering. It can be deceiving especially when you feel like this for many months or even years during treatment.
I have everyone throwing out life lines. I see a therapist, I force myself to get out and change my scenery...but this just isn't enough and I still feel as though I am being sucked down into nothingness.
The only answer is to do whatever I need to do to recover from Lyme and while doing so, talk to people in my family, continue therapy, continue medications and now I spend a few minutes a day talking to myself out loud.
Lately I have been saying "You have obviously made major improvements compared to two years ago." "Look at what you can do now that you could not in the past." "People love me and they need me." "This is just a short blip in my life if I live to be 75." "If I recover in the next year, I still have time to have a new life and be happy and forget about all of this." "I can do this."
This is not to say that every day I feel hopeless and that I wish I could disappear, but talking to myself and therapy can supplement a bit.
Having people in your family that understand is very important. I was not able to communicate my depression to my family because the depression came on so gradually and slowly that it became a part of my personality...and I no longer had a point of reference to compare my feelings against.
I think about it this way. How do you compare the way you feel mentally to everyone else when you don't have any idea how others feel mentally. You are judging yourself based only on the way you feel. Unless we could jump into ten other healthy people’s bodies for a week vacation, we really don't have that comparison. Mental illness is tricky that way and that is why it is so easy to deny by others.
The best thing you can do for yourself is decide if you are really ready to do whatever it takes to get well. If it is yes, then find a Lyme Specialist. Someone who understands the disease believes in you and supports your needs. Then be ready to do whatever they ask. Don't be afraid to tell others how you feel and reach out for help from family, friends and therapists...and people here.
In the past, I was very vein and judgmental before the disease snowballed and took over. It was always very easy for me to smile and pick someone really cute who I thought I felt attracted to. I was confident and loved my body and appearance.
Now, I have lost my chiseled features. My face looks swollen. I am 70 pounds overweight. No one takes a second look at me in the mall. I sweat all the time and am ashamed when people notice. One of my eyes is closed more then the other. I can no longer continue with my passion of bodybuilding. I didn’t realize my life was revolving around that and because I had something that made me feel so wonderful, nothing could get me down.
Later in my life, my wife went on to find more handsome men and now I am left feeling dumpy, rejected and displaced. I feel helpless because I can't just go on to the gym and "show her" because I can barely take care of my kids. I am close to losing my job and benefits that cover costs of my treatment. I do feel raped. My wife just one day said "I'm not attracted to you anymore." And she said she was not happy in general.
I am lucky to be further along the path then most because I have found a good doctor, a diagnosis for Lyme and two co infections and a treatment plan. Now I just have to push forward. It’s hard when you don't have any enjoyment and can't find pleasure in anything. That is where I am right now. That makes time feel like it is standing still. And that is when I think people get clinically depressed, become hopeless and feel like ending things.
Maybe you can write a list.
1. I deserve to feel good again
2. I am capable of much more and will have it all when I am in remission.
3. This feeling of hopelessness is not real.
4. My feelings of hopelessness can and will change.
5. I am going to dedicate whatever necessary to get better and use no short cuts.
6. I will be a fantastic person when I am in remission.
If you have anyone in your family that you used to be close with and have since cut off your relationship in a negative fashion, the best gift you can do for your depression is to forgive them. To forgive is a gift to your soul. Now typically when people start to talk about religion, I am immediately turned off, but I'm gonna go out on a limb and say this much...because I believe it to be true.
To forgive is to love and when you love, god shines his light on you, to quote a line from "Into the Wild." A story/movie whose message is fantastic and mind expanding.
I am not saying I don't wish I could end all this every day because I do...I hate this. But I feel your words and your feelings and I am there. If you have love in your life, reach out to it. If you don't have love, chances are it's time to forgive.
Rodney: Once again your words speak to me as if you were inside my head! Whenever I see you have posted more than a paragraph, I just go grab the tissues 'cuz when I read what you have to say, it's like I'm reading about myself.
I'm a tolerant and compassionate person, always have been. I never treated someone different because they were in a wheelchair, or fat, skinny, white, black, Asian or purple.
However, I went from a 40 year old bikini wearing fit & healthy woman who was in the best shape of her life to being 90 lbs overweight, wearing my dads hand-me-down sweatpants and oversized Miami Dolphins sweatshirts.
I have to say I notice a marked difference in the way I am treated.
Prior to Lyme, I was treated nicely, men (naturally) gave me more attention than I wanted, but I was a friendly gal and I assumed everyone else was friendly also.
Now, people treat me differently. Doors don't get opened for me, if I drop something in the grocery store no one reaches to pick it up, if I'm walking from my truck to a store, no one makes eye contact. I also sweat at the drop of a hat and it's embarassing for me too.
I never realized how society favors the "beautiful" people. It's quite a humbling thing for me to have become aware of. I'm going to be twice as nice to strangers when I recover.
I know what you mean about the opposite sex. I had male friends who don't call or write anymore and it's been a loooooong since I turned heads. I was used to getting stared at and spoken to by men all the time, especially since I was single and therefore didn't wear a wedding band.
Fuuny, back when I used to go dancing 4 times a week, I went to Target and bought some fake engagement and wedding rings to wear so I could dance in peace and keep the 'wolves' at bay.
Even my family treats me differently now.
Depressed? Ha. On my bad days, if I were feeling any more down, I'd need roller skates on my back.
It's a combination of everything that gets me down in addition to the darned bacteria invading every gland in my brain and messing with my nuerotranmitters.
I was on antidepressants for a while but they had no effect. Maybe the bacteria was too entrenched in my brain to get it out.
I still have fun with my kids and we laugh our heads off every now and then. I try like the dickens to keep a positive attitude as so many hear have taught me. Some days I can do it, other days I just want to curl in a ball and cry.
I can't wait to get back to my old self. I don't mean exactly back to who I was - I'll never be the same after having gone through a long term fight with Lyme, but I have every intention on getting my body back, getting my teeth back to where they were, getting my skin back, etc.
I'll get a big fat credit card and take a picture of my old self to a plastic surgeon and say 'Make me look like that again'.
I can't bear to see myself in a mirror - yuck! I don't even fit in my old 'Super Girl' undies or my old lingerie.
I have a terrible time accepting that this is what I am right now. There are days when I can't listen to the radio as music was such (and is) a major part of my life. If a song comes on that's older than 3 years, I just cry.
I miss being able to do laundry and do yard work and ride a bike and dancing ... I feel like a part of me died inside when I had to stop dancing.
Keep fighting guys. I'll talk to myself and you all and my journal (can't afford therapy but would love to go) and share my feelings.
These message boards are a god send. Thank you so much to everyone that replied and shared experiances of their depression and how life is now. Its a tough ordeal to look in the mirror one day and almost take for granted the reasonable healthy fit person, who has no issues looking back at you, only to be faced some time later with a larger, tired, drawn, empty shell of a human being. I try not to dwell on what I had, but rather on how I can get through today and be satisfied with even the smallest of things that I have managed to acheive. Being depressed is like living in a silent hell. It invades your life, slowly eating away at the very core of the decent well balanced person you once were. It has no boundries, and is not satisfied until it has consumed most of your thoughts, made you anxious, paranoid, frightened, lonely and worthy of nothing more than than being dumped in the trash. You can't put a plaster on it, so people don't understand because they can't see it. However I try also not to get annoyed with people who don't understand, how can they, when they have never gone through it. That doesnt excuse the ones who say "pull yourself together", if only!....Its good to know that I am not alone in these feelings of total despair at times, I hope all of you who go through this are able to shake some of the demons, from time to time, if only for a while, untill the next onslaught. Every GP and medical professional would do well to sample a spoonfull of depression just once in their life, Im sure then we wouldnt be passed off or dismissed quite so readily as they do now.
I hope with all my heart that you will see that this disease has made you all stronger in spirit,and courage. Re-read your posts. They are full of feelings,that you openly share with others,in order to help, and provide comfort to others. A part of you is at your very best! The world has gotten cold in so many ways, but look at ya"ll, giving the very best of yourselves to "strangers". Dont doubt you have probably saved lives with your words. At the very least, your words have given hope even in your despair. And Rodney, your postings are the icing on the cake. IT IS TIME for you to publish. Your writing grips us all.
Topsy123: I don't know your story. If you don't mind sharing, what led you to get Lyme? What's your current treatment protocol? You seeing an LLMD (Lyme Literate Medical Doctor)?
4sons: My brother lives in Apex, NC. Is that near you? I second your motion for Rodney to publish. Same questions for you if you don't mind: are you seeing an LLMD, what's your current treatment?
Rod: Hey babe. I haven't been in the hot tub lately. Silly, but it's too much effort to put my "flipper" over my left arm to waterproof the PICC line, then find my boardshorts, etc. In your honor I will go in it tonight and wave towards PA if you get started on your book/story.
Mickie thanks for your words. If there is a subject that touches me, sometimes I really feel like writing...but I wouldnt know where to begin with a book...and I lack credentials publishers would be looking for.
Who really wants to read a book about a depressing Lyme guy!
Mickie...Thanks for your reply. In answer to your question, I have not been diagnosed with Lymes, and don't know If I ever will be. I am trying to investigate the possibility. My sister in law who is a nurse practitioner in NY, suggested I ask the question. I have had symptoms for years on going and she has seen me going through this. I went to my GP but he said you don't have or have any knowledge of a rash and don't live in America, so was not prepared to do the test. My sypmtoms started with what felt like a stroke, I had facial palsy, and was EXTREMLY ill for 3 months. My symptoms wax and wayne, come and go, although I have never been the same since that day. I get joint pain, wrists, knees, my arms ache, light sensetivity, memory problems, brain fog, (hate that one!), fatigue, night sweats, I feel very stiff and get bad nerve pain, when I lower my neck sometimes, its like electric shocks going through my body. I could go on and on. Apparently its not MS according to my neuro, it is some kind of systemic inflammatory disease, he says, but not sure. The Rheumy I saw said dont no, but its not Lupus. Another neuro seemed to think it was some kind of Encephalitis. God knows what it is...All I no is this isnt easy to live with and my life has changed dramatically. I live in England Mickie, and whilst there is a British Lyme Disease foundation, its still not taken seriously enough to investigate. There is one guy who I am gonna contact based in Wales. He is a LLMD specialist, so im hopefull he will be able to at least guide or help me.....
Absolutely. As Mickie said, that is classic Lyme. You had the classic acute phase of the infectionw with the flu like symptoms and nerve inflamation with the Bells Palsy. Both my mother and father suffered with lyme in the same way. As time progressed, they both lost their health to issues I believe were related to Lyme. My mother developed rectal cancer and she also lost bone density in her spine which is another documented long term symptom of chronic Lyme. My father has breathing problems and needed a cornea transplant because of constant problems and infections in his eye.
The faster you can get your blood drawn and sent to Igenix the better. The longer Lyme stays in your system, the weaker you immune system becomes and the less responsive it is to the testing.
Heh Mickie, I live less than a hour west of your brother. I remember when Apex was a small country town. It sure has grown! I have been thinking about you loosing your job all weekend. I kept hoping I could think of some magical answer for you. Being a mom, I always want to make things "all better". I agree with Ticker about unemployment, and prescription assistance.Everyone is sending you love and you are in everyones thoughts that is for sure.
I have not been offically diagnosed yet. I see a LLMD in December,unless I get a cancelation. I dont know what it would take any other kind of doctor to diagnose it. We have all the symptoms, they dont like the Lyme tests results, whether they are positive or negative. The last neuro I saw, I went into a classic Lyme rage, turning into Linda Blair in The Excorsist, spewing words of incompetece and cop-out diagnosis all over him,and by the look on his face, My head even turned a 360, he told me Lyme is very rare in NC. Blah blah blah.
I have not been depressed yet, but I think that can easily come with treatment. With the herxes and possible long recovery there is an obvious loss of your whole former way of life.And how it affects your family, And then the experience of discrimination,from the medical community,insurance,societys lack of knowledge and understanding, to you loosing your job and benefits. We dont exist,and we are too sick to fight for ourselves.I cant believe I am saying this but we need a lobbyist in D.C.
I just wanted you to know a lot of people are with you in their thoughts.
you take care girl.
Topsy: I know the docs in the UK can send blood to Igenex. They use high quality media in their testing and their results are usually more accurate than other labs.
4sons: my personal favorite misdiagnosis is when a nuerologist told me I had dementia. (jerk)
Oh man - I've had Lyme rages. I was at my parents house playing Mah Jong and for no reason, I felt the urge to stand up and tip the table over! I also have a banged up keypad on my micorwave from when I turned off the beeping timer by smashing it with a bottle of Worsteshire.
We'll all get through this one way or another - battle cry my friends!