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    Old 03-08-2005, 05:34 PM   #1
    Jarlena
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    Lyme and Mental Illness

    I'm sure this topic has been covered many times before, but I am new to this Lyme board and would really appreciate hearing from any of you. I have been suffering from this horrible illness for over 15 years now (got infected in June of 1989 on the eve of my 21 birthday but was misdiagnosed until the time I turned 27 and so, went a long time without treatment) and my life has never been the same.

    One of the worst things that has resulted from my being infected has been the loss of myself. And by that I mean the happy, inspired, and full-of-life young woman I can barely remember being. Over the course of the past ten years, I have turned into someone else and it seems that at only a few times on some of the most powerful meds was I able to regain some of my former self, but it never lasts for very long and can be the most despairing and frightening of symptoms.

    On any given day or hour it seems I can suffer from minute to minute mood swings, crying spells, extreme irritability, rage and at times, suicidal feelings/hopelessness. I have experienced the paranoia, deep depression, feelings of despair, and anxiety that I know so many of us face, and it has totally taken so much of my life from me, alienating so many friends, family members and boyfriends along the way. When my Lyme is flaring, and especially at times when I am recovering from a cold or flu and my body is seriously been weakened, sometimes it can feel like I am almost losing my mind and at my worst (before I had been initially treated) I believed I was almost borderline schitzophrenic. There is so much more, I hesitate to list it all and get scared just thinking about facing the fact that this is who I am now.

    Its so hard to listen to all those "well meaning" people who tell you to think positive and shake it off, and who point out how there are people in wheelchairs who are out there contributing to society, when they just don't have one damn clue of what it's like to bear the burden of disease-induced mental illness. Sometimes it kills me to think what's been lost and what I can never have back again, like the last 15 years when I should have been out there making my dreams come true, getting married, building a life with someone, going on trips, laughing, making love, and just living.

    I know many of you have probably had similar experiences, as it is well documented what this illness (like syphillis) can do to the brain. But please tell me, do these symptoms ever really go away with consistant treatment? Is there any hope that if I persist, I might find my former self again and that I won't have to live the rest of my days in this perpetual nightmare? Since I am a big believer in alternative medicine (although I have never found that magic bullet either) can anyone share with me what, if any, natural products have helped them? I am just about to see a new doctor (havent been to one in 6 years, so my body has been battling this on its own for a long time) and hopefully, she will help me. But in the meantime I continue to try and educate myself as best as I can and take as many steps possible to climb out of this dark hole I fell into on the threshold of my life.

    Please any comments or advice would really help. I feel so alone.

    Thank you,
    Jarlena

    Last edited by Jarlena; 03-08-2005 at 05:35 PM.

     
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    Old 03-08-2005, 06:06 PM   #2
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    Re: Lyme and Mental Illness

    good god, this is exactly what I have been thinking for the past couple of months. This is my life.

     
    Old 03-08-2005, 07:04 PM   #3
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    Re: Lyme and Mental Illness

    Hi Jarlena, welcome to the board!

    I am very sorry for what this disease has stolen from you. You are very articulate at expressing your feelings. If you are not already, you should do something writing related.

    You absolutely can get better with the proper treatment. It can be difficult to go through treatment, but you can get better.

    Have you ever been treated by a Lyme knowledgeable doctor? Besides Lyme disease, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It is very important to be tested for these by a Lyme reputable lab. Have you ever been tested for them? Being co-infected will affect treatment choice and progress. Many Lyme doctors believe the co-infections need to be treated first for the Lyme treatment to be effective.

    Finding a knowledgeable doctor is the most important thing you can do. Many doctors do not understand these diseases and treat with outdated protocols. If you tell me where you are located, I will tell you of the closest knowledgable doctor to you that I know of.

    Many people with Lyme have the scary symptoms you describe. You are definitely not alone. Dr. Brian Fallon at Columbia University partially describes the cognitive and psychiatric aspects of neuropsychiatric lyme disease as:


    Cognitive Aspects in Adults:

    Attention Problems: Easy distractibility; difficulty handling multiple tasks at the same time; trouble sustaining attention on tasks and completing tasks; trouble following the course of conversations or the text of a book.

    Memory Problems: Retrieval difficulties are common in which patients may have a hard time recalling what they know; patients may forget conversations or children may forget that they've done homework assignments. At other times, patients experience a problem with the "working memory": as if the material can't be kept on board long enough. Patients may find themselves keeping multiple lists, but then they lose track of where they put their lists.

    Slower Processing Speed: Patients may find it takes them longer to respond to questions or to complete tasks. Reaction time and thinking feel sluggish.
    Verbal Fluency problems: the ability to engage in normal conversations is impaired by the inability to retrieve the right word for the moment or the ability to "name" well-known people or objects. Patients may experience word substitutions or "paraphasias". A patient trying to refer to a "microwave" might, for example, say "radiator". Or, trying to refer to "***********" the patient might say, "AOL". Or, trying to refer to "fireworks", the patient might say "skylights". Patients may also experience an impairment in speech production, such that they stutter, particularly at times of sensory overload.

    Psychiatric Aspects in Adults
    Irritability and moodiness are common. These tend to be most severe in neurologic Lyme disease before treatment, during the first few days or weeks of treatment, and during resurgences or relapses of active Lyme Disease. Antibiotic therapy can be very helpful at these times. Symptoms that persist despite appropriate antibiotic therapy should be treated with psychiatric medications. It is very important for patients to take advantage of all opportunities for therapeutic benefit. These include consultation with a psychiatrist for both medication and therapy. Psychotherapy with a psychiatrist, psychologist, or social worker can be very helpful to help the individual cope with the effects of a serious illness. Family and couples therapy can also be vitally important, particularly when family members are confused by the changed behavior or personality of the patient. Psychiatric medication can be very helpful to combat mood and sleep disturbances, to enhance attention, to decrease central nervous system hyperacuities, to decrease excessive worry and fear, and to contribute to overall good health by countering the negative impact of neuropsychiatric disorders on the immune system.

    Mood Lability: spontaneous swings of mood; spontaneous tearfulness. At times, patients with these symptoms may appear to have a Bipolar II disorder.

    Irritability: an inability to tolerate normal frustrations, with quick bursts of anger. Patients may seem to have undergone a personality change in that previously mild-mannered individuals may now become quite difficult.

    Panic attacks: tachycardia, flushing, chest pain, , numbness and tingling, shortness of breath, choking feeling with the sensation of loss of control and/or of fear of death. Needs to be distinguished from tachyarrhythmias. Panic attacks unrelated to Lyme disease are usually 10-20 minutes in duration. Lyme-related panic attacks may last for an hour or more.

    Less commonly: manic or psychotic episodes (during encephalitic phase), paranoia, tics, obsessive/compulsive symptoms (may trigger a milder pre- existing condition or bring on symptoms de novo)
    .



    I hope it helps you to know that these symptoms can be caused from Lyme and other tickborne illnesses. I don't think there is any way possible for people who do not have Lyme disease to understand the symptom severity and the multiple systems it affects. But the people on this board do understand, so I am glad you found us.

    Hang in there okay? Good help is available. Please keep posting to let us know how you are doing.

    Last edited by ticker; 03-08-2005 at 07:12 PM.

     
    Old 03-08-2005, 07:20 PM   #4
    jennsen
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    Re: Lyme and Mental Illness

    Jarlena,

    What a great, honest post! I'm so with you and understand exactly where you are coming from. I want ME back too. I sometimes feel disconnected with myself, what's up with that! I'm constantly trying to remind myself that I'm still me, just dealing with a strange and difficult disease that is bound to make me question a lot about myself and life. The one thing I hate about this nasty disease is that it turns me so inward, always looking at myself. It's really hard but I'm trying to accept who I am (with lyme) so I can focus on doing and thinking about others. I too would love to hear if the neuro symptoms get better, or better yet, totally disolve with treatment. I'm about 9 months into treatment with a few periods of feeling better mentally. Sometimes, it seems my only hope is that God knows exactly what we are going through and has a plan for each one of us. Also that God loves us just the way we are, even if we feel hopeless, depressed, paranoid, disconnected or mentally ill.

    Thanks for sharing, it has helped me to know that I'm not the only one who is fearful of these whacked out neuro symtoms.

    I wish you well.
    Jennsen

     
    Old 03-08-2005, 09:08 PM   #5
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    Re: Lyme and Mental Illness

    Jarlena,

    First let me say that I am truly sorry you are going through all this! Know that you are NOT alone. In the last couple of weeks I have realized how I have lost myself. Totally made me look at everything going on.

    I was loaned a book "Beating Lymne Disease with alternative medicine and God-designed living". Totally awesome book. Dr Jerningan really focuses on how we got sick and how to heal our bodies. I have just recently talked with someone who has been following his book and started on supplements. I am looking forward to discussing what they have been doing.

    Just know that with chronic illness our bodies were out of balance to begin with and its not getting our lives back but changing our lives and healing ourselves so we have a better quality of life. Bringing your mind, body, spirit into harmony.

    ~P

     
    Old 03-09-2005, 04:14 AM   #6
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    Re: Lyme and Mental Illness

    Hi Jarlena - You are not alone. What a beautiful post...Thanks for sharing your thoughts and feelings. I definitely can relate like so many here. You know it is so interesting because I know that I had an exposure back in August 2003 but was having symptoms before this which involved breathing problems, fatigue, migraines, chills and shaking, so I think my hiking around in NE exposed me numerous times.

    These are insidious diseases and infections...they snuck up on me and over the years I have lost myself. It is interesting that before I got extremely ill on all fronts last May that I felt like there was already this disconnect between who I was at one point and who I am know. At first I just felt like it was the normal wear and tear of years...but now I think it was lyme the entire time. I question if I haven't had this a since Junior High School or earlier. I had difficulty learning at times and was told by a teacher that my speech patterns and thought patterns did not coelesce with my grades. I had water on the knee in Jr. High and chest pains then that the cardiologists just blew off.

    Anyway, I am so sorry you have gone through this and are left with this feeling that your life just never begun. Please try to dream that it can improve though. You have not been in treatment for this stuff and I can tell you that while it is hard at times I am starting to regain things like my sense of fun, hope, optimism, and belief that I will get better.

    You have to fight this disease with everything you have...and yes, you will have those moments when you feel you can't get off the floor but you have to try the next day. You need to find some friends that understand. I don't advocate necessarily going to a support group but maybe it could help.

    I know for me what has helped the most is talking to others and being with others who "get it" when it comes to this disease. The sad thing is that most of my friends just don't really understand what I am dealing with...how could they, honestly? I couldn't if I weren't going through it - so I try with everything I have to forgive them for this...but I also don't waste my energy on it.

    You have found us and we are here for you. You need support - you can't go this alone. I am with Ticker - write about what you are going through. Believe you will get through this...

    Last edited by ncgirl88; 03-09-2005 at 04:26 AM.

     
    Old 03-09-2005, 04:23 AM   #7
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    Re: Lyme and Mental Illness

    Jarlena, thank you so much for your post. I understand your feelings and have had many of the same. It's true that lyme does this and also true that with the right treatment you can get rid of it.

    I have had lyme for decades undiagnosed and have been on many medications for mental disorders. I started with depression (not sadness, but true mind altering and life altering depression) in 1981 when I was 14 years old. I have had problems with confusion and memory loss and also with extreme anxiety. I have had voices in my head calling me all kinds off horrible things and hearing these voices has made me suicidal in the past. I had a very strong sensitivity to medications, even over the counter cold medications made me mentally unstable.

    I have had problems shopping in the grocery store because I would hyperventilate and feel the aisles closing in at the end when I looked down them. I could not be in crowds because I would become confused and anxious, I also sometimes could not understand or connect ideas and time frames in normal conversation.

    I have been on prozac, buspar, zoloft, and many others but they only helped a little bit. Now that I have been on heavy antibiotics for ten months, I do not have any of these problems and my mind is clear for the first time in more than twenty years. I cannot believe it, but it's true.

    My advice to you is to treat your body with extreme care. Monitor everything you put into your mouth and make sure it's good for you because medication to kill lyme is not enough, you have to make yourself strong. Read Dr. Burruscano's writings about lyme, they are very helpful and will tell you how to do this.

    If you read his stuff you will see that lyme affects every system of the body including the nervous system, pituitary gland, thryoid, adrenals and many others that directly affect mental ability. Ask your doctor to test all these things for you so that you know what you need to build up.

    You can get better. Don't give up! Keep writing in so we know how it's going for you. We are here for you.

     
    Old 03-09-2005, 04:23 AM   #8
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    Re: Lyme and Mental Illness

    Welcome Jarlenea!
    Ticker, thanks for posting that info from Dr. Fallon, it makes me feel better knowing what I am going through is recognized my Medical community and not in my head!

    Jarlena,
    That is the great thing about this board, you can come and talk to us, we know and understand! We will not give you the standard lines about "hanging in there", we try and be really supportive. It has helped me alot!!! My panic attacks have gotten so bad and last so long, I just stay at home most of the time! Find that Lyme Specialist, even if you have to travel to see them! They are so much more sympathetic and through in their treatment!
    God Bless
    GomezNC

     
    Old 03-10-2005, 07:42 PM   #9
    Jarlena
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    Re: Lyme and Mental Illness

    Oh my God, I never expected such a warm and caring response! Thank you all so much for the encouraging words of support and hope. You don't know how much it meant to hear your thoughts and to know that I was truly being understood, maybe for the first time. I think for me, that has always been the greatest challege. The terrible feeling of disconnectedness and alienation from what once was your normal life....from the people you love, from the person you used to be. It really did make a difference just sharing my story and hearing from so many of you that there is hope. I am so happy I discovered this board. Thank you.

    There is so much I want to say to everyone who was kind enough to post. Ticker, thanks so much for that invaluable information. I have also investigated the different neuro/psyche symptoms of Lyme and have heard of (although have not read much of) Dr. Fallon's findings. It's incredibly scary what an infectious agent can do to an otherwise mentally healthy person, and the consequenses can be truly life-altering. Believe me, I have probably experienced all of them.

    For years Ive been trying to do the natural/alternative therapies, some with more success than others. I do take care of myself as much as I can with diet, and yoga and all that good stuff, but I think I need to go back on some serious antibiotics and soon. As I mentioned I have an appointment in a few weeks with the beloved Dr. E of NJ. I am hoping that she is someone who will really listen and can help. have any of you had any experience/success with her protocol?

    I actually was tested for co-infections way back when they first discovered it was Lyme and I did have exposure to Babeosis, but not Erlichiosis, though I believe I was reinfected with Lyme again in the summer of 2000, so God only knows what's been added to the mix. .

    I am definitely going to get the book you guys have been talking about "Beating Lyme Disease" thanks for posting it, though I probably have tried alot of whatever it recommends. I know we've got to "kick butt" as you say, and I know that every day I give it my best try. As you know, some days it's easier to proceed than others. Some days it's all you can do just to get up and it's easy to feel like giving up. But I haven't given up yet, and I know I never will.

    I promise to keep you posted on the doctor and what is happeneing. Thank you sooooo very much for your kindness and encouragement. And thanks also for the compliment on my writing. It's funny because though I do enjoy expressing myself in writing, its not something Ive been able to do well these days. if you only knew how many words I originally spelled backwards and how hard it was just to write a coherent sentence in that first post. It always kills me to think of who and what I might have been without Lyme. But I am here right now, and I can only take one step at a time.

    With Love and gratitude,
    Jarlena

    Last edited by Jarlena; 03-10-2005 at 08:00 PM.

     
    Old 03-11-2005, 06:41 AM   #10
    ticker
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    Re: Lyme and Mental Illness

    Hi Jarlena We really do understand how you feel. I know that your post has helped others who feel the same way.

    I agree that it is a good idea to take antibiotics to eradicate the infection. You can still do things to strengthen your immune system. I have heard only excellent things about Dr. E. so I know you will be in good hands. Talk to her about supplements that could be beneficial. You may want to read Dr. Burrascano's treatment guidelines beforehand to have some ideas about the supplements he suggests taking when on antibiotics. Good luck at your appointment. Let us know how it goes.

    Jarlena you are an excellent writer. You can always use spell check to check for typos! Do not dwell on what you think you may have been if not for Lyme. I would bet my last dollar that as you (and others dealing with this) recover, you are going to be a better and stronger person because of the experience. Your writing and the quality of your life can only benefit.

    Take it one day at a time. I hope this day is a good one for you!

     
    Old 03-12-2005, 12:48 PM   #11
    ciconner
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    Re: Lyme and Mental Illness

    Wow, I just posted twice about my mental problems before reading this. I'm off the abx for 2-3 weeks and am crying a lot, feeling like the world is against me, but also my moods are up and down and feeling manic at times.

    Ticker mentioned some people being diagnosed as bi-polar. Me. About a year ago except right now I'm not taking anti depressants or anything because I don't buy it. The bad thing is since I've stopped the abx. I feel like the world is against me, I'm not worthy of the air I breath and have been suicidal. I would never because I have enough sense to know it's all in my head and I don't want to do something I can't undo. Lord knows I've done enough of that in the past.

     
    Old 03-12-2005, 02:28 PM   #12
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    Re: Lyme and Mental Illness

    ciconnor, be good to yourself. I know those feelings you're having and it's not easy to be in that place. Even though you know why it's happening, that doesn't change the fact that you feel so bad right now. Do all you can to keep your body strong and if you can talk to someone do it. Just because you realize that it's the lyme and the meds that are making you feel this way, that doesn't take it away.

    Be careful. Take care of yourself, hope you come through it soon.

     
    Old 03-12-2005, 03:38 PM   #13
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    Re: Lyme and Mental Illness

    Thanks Sleeperwoken,

    I'm better today. I was breaking down a little the past couple of days, but am better today. It was a blessing to come to this site and find out that it's not just me and could be the lyme.

    Cat

     
    Old 03-13-2005, 06:31 AM   #14
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    Re: Lyme and Mental Illness

    Morning friends,

    Just another perspective. I was diagnosed bi-polar about 18 years ago. While working through incest issues, I made the comment in a group therapy session that I was perplexed: I knew I was making great ground, but was mentally/emotionally getting thrown on butt every few weeks just when I thought things were better than ever. Someone in group suggested bi-polar, I think in hindsight, from watching my affect, etc. as well as my self-report.

    I went to a doc, answered a bunch of questions, and he put me on lithium. Told me it'd be 2 weeks before I notice it's effects. Two mornings later, I noticed that my mind wasn't racing, I didn't have several dialogues going on at once, etc. It was actually 'quiet' in my head for the first time since I ???. I didn't know that what I experienced wasn't normal. At the time, I was driving an hour to work 2x a week, and would sometimes have to pull off the road because the inspiration I had was so great I had to write it down (like an entrepreneurial idea, for example). I felt like if I didn't get it out, I might just explode.

    So the 'quiet' was indeed a welcomed relief. Took some time facing the label of bipolar - part relieved for the 'relief' of meds, but much shame too. Eventually added low dose of zoloft to offset monthly mood swings that still were at play. Several years later, I read up on bipolar and requested a 'downgrade in my diagnosis' for insurance purposes. Now I'm diagnosed with cyclothemia which I 'proudly' tout over the bipolar but no one knows what it is. Just less extreme swings, no history of hospitalization, etc.

    So, my point? Be careful. Although I obviously still don't warm to this label, I am grateful for knowing that I have a chemical imbalance. I do know that if I were to allow myself to get way out of kilter (discussed trying to wean self off of meds with shrink at one time, which he was actually open to), that the reprocussions of severe swings are: increased incidence of severe swings. The way he explained it: Once you've been on a manic high/depressive low that has been a major life disrupter, i.e., hospitalizaton, your chances are significantly increased for more extreme swings.

    I may indeed some day try a more natural approach but I know not to ignore it. I have a chemical imbalance in brain. As much as I hate it, I am fortunate that it is quite manageable with meds. To ignore a true chemical imbalance can be dangerous. I've said a lot because it's the only way I knew how to say what I wanted to really say. What I hope anyone with chemical depression will hear. No, I don't think that really hearing me equates with 'running to doc' for Rx. But I do hope that I've impressed the importance of taking chemical mood stuff serious and that real damage can be incurred if one allows the chemistry to go way crazy.

    It's so weird to talk about this in such an objective, clinical sense. I'm now grinning. This is not my normal lingo to describe myself... me and my family joke a bunch about it. I think I just really sensed an urgency here.

    What I failed to say and will now make short is that since my physical (lyme) symptoms came to a peak in the fall of '04, my mental crap has been off too. I'm more impulsive, feel overly introspective, highly (ridiculous?)sensitive, moody, low, needy. And I AM paying attention to it. I would hate to increase meds. Now on toprimate - very expensive! But I am paying attention.

    Love to all, cj

     
    Old 03-13-2005, 07:02 AM   #15
    ciconner
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    Re: Lyme and Mental Illness

    I do have to be careful. What happened to me is that my doc said I was misdiagnosed as depressed and prescribed an antidepressant. It's supposed to take about 10 days to a month for the medicine to work. It worked for me immediately and I was over-impulsive. I became arrogant and I knew I was destroying my life, but I didn't care. I also didn't know that it wasn't normal. When you find out that the behavior isn't normal it does make a difference. When I stopped taking it my emotions finally came back.

    One thing I observed is I started taking Paxil right after I put a beloved pet down. He was healthy (except he was mentally ill, too). I cried for weeks. When I stopped taking Paxil about a year later I cried an entire day again over my dog. It's almost like I went back to where I left off mentally when I began taking the Paxil.

    People don't understand mental illness and think it is a cop-out when you try to explain that it does affect your behavior. The brain is an organ and if there's an imbalance it has to be fixed. Wed. I'm getting an MRI on my brain, too.

    I have had bi-polar symptoms since I was about 12 (upon looking back). When I was 7 there was an old man who would give my friends and me quarters (that was a lot in 1968). He also picked me from the rest of the group because I revealed I was a latchkey child (Queens girl). Obviously he asked me about our parents. I thought I was special because I was his favorite until he lured me into his house and did something I didn't like. I got out before things got out of hand and I never told my parents. I was crushed that someone would do that to me because I realized that I wasn't special after all.

    This is weird regarding when I almost destroyed my life in 2001. A woman (who lost her mind) called me out of the blue and was talking incoherently but said, "You're destroying your life!" I was walking around with a cordless phone and spotted a small piece of paper on the floor and as I bent down to pick it up she spit out, "Pick that piece of paper up!" She was living in PA at the time. I'm in NJ. Go figure. I should've heeded her warning.

     
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