I don't know where to start. I don't know where to turn. I look in the mirror and don't know the person staring back. I think and don't recognize my own thoughts. I hate those i once loved. I hate the things i used to love doing.
I used to be slim, smart, funny, loving, beautiful. Now I am fat, slow, boring, hateful and hurtful. I have lost the beautiful person ( inside and out) i once was.
I used to be a writer. I was writing a book. I loved to write song lyrics, jingles and poems. I haven't written anything in a long time. Writing was like breathing in, loving was like breathing out. I haven't breathed in a long time.
Tears are streaming down my face as I remember the person i used to be. Worst thing is that all my doctor's have told me that there is nothing wrong. That it's fine that i barely eat yet gain weight. That there's no medical reason for my entire body to ache. it's fine to not be able to feel your feet once in a while, to have your feet and hands to feel like they're on fire. To not remember things and be unable to finish a sentence because you forgot what you were talking about.
No one has diagnosed me. After months of testing I feel in my bones that I have Lyme disease, but because i never noticed a bulls eye rash lyme is out of the question.
I don't know why i wrote this. I don't think anyone will read this. But when i can no longer think, walk, talk, see, I want someone to know that i wasn't always like this.
I was a person once. I breathed without effort. I worked. I loved. I danced around my room with the radio blasting. I sang and wrote songs. I visited my family. I took showers without seeing my hair fall out. I made people laugh. I smiled. I LIVED. I never thought life stopped at 21.
hang in there! I know how you feel. Check out Ticker's list of symptoms. Hair loss is one. You very well could have lyme. About 1/2 of people don't remember being bitten by a tick. A lot of people don't get the bullseye rash.
Check out other posts you'll be surprised. mc
Have you been to an llmd? Have you had a western blot test at Igenex? You can get better from this. You can regain the person that you think you have lost. Don't give up or lose hope. Proper meds can help you. Sounds like you are caught in a depression too. This could be chemical and due to your illness as well. I once had a chemical imbalance from drinking too much alcohol and too much coffee and too much exercising. Burnt my adrenals to hell. When I changed my habits, the depression lifted. It took months but now I'm glad that I hung in there. You do the same. There is an answer and you won't feel the way you do right now forever. Your feelings and emotions are influencing your reality and perspective right now. But feelings and emotions can change and in turn change your reality. So try not to give all of your power over to them. Try and recognize them for what they are. Easier said I know...You are not alone in this. We are all here listening and supporting you.
You have not stopped writing or lost your ability to. Your post really got to my heart. Many people can totally relate to what you are feeling. I read on an earlier post by you that you were seeing an LLMD- what happened? did they really say not Lyme cause no rash? If so, get another LLMD. Have you had a negative test? To a good LLMD, that will not matter. Lyme is a clinical diagnois and your symptoms definitely should give you cause to suspect it.
Lyme not only takes away our physical health but our emotional health too. ILADS has a good pamphlet on the psychological effects of the Lyme bug and it's co-infections. I gave it to my psychiatrist. By the way, are you seeing one? I started seeing one after I got heart palpitations and felt anxious all the time due to my undiagnosed health issues. I am on Zolft and it really helps, even now that i am diagnosed. You are in my thoughts and prayers for a healthy outcome but it will be a long road. Please see a good LLMD as soon as you can and continue to come to this board for help.
I can so relate to the feelings you describe. your post has me in tears. Just a few months ago I wanted to end my life.
no, life is not supposed to end at 21. I am 43, and life is nto supposed to end at 40 either. i started getting acutely ill at 40, and some dr's tried to tell me it was old age. I know plenty of 50, 60, 70 year olds still active and healthy.
there is hope out there, and there is help. I pray that you find it. I agree your first step is to find a good LLMD.
aqua, I'm new to the group and this is my first post. I know EXACTLY how you feel and I'm sure it's MUCH worse at your age. I'm 47, been "disabled" for at least 4 yrs., and I actually went thru hell all my life due to a birth defect called Poland's Syndrome. I was born missing my left pectoral muscle and some ribs on my left side so I've had more than 30 reconstructive plastic surgeries which resulted in MAJOR infections & complications that weakened my immune system.
Then I had what I'm almost positive was a bite from a brown recluse spider in May '03 and I also broke out in a horrible case of hives about 6 months before that. The spider bite was the "last straw" for my body but I don't know when the Lyme disease actually started. It could've been at the time of the hives breakout or it could've been even earlier, but I think it just stayed dormant until that spider bite. I somehow got thru a lot of surgeries and infections before my body finally gave up.
I had a MISdiagnosis of fibromyalgia for about 3 and a half yrs. and I finally got a positive Lyme test result from IGeneX in Dec. '06. Unfortunately, I now think I had Lyme disease before the spider bite and maybe even before the hives. I don't know how long I've had it and I used to be a regular blood donor to the Red Cross! They used to call me because they wanted my B negative blood and even if I got Lyme disease from the case of hives in October '02, I know I gave blood that year at Christmas time, before the spider bite. I wonder how many other people are passing on Lyme disease the same way because they don't know they have it!!!
My family doc tried 5 months of oral doxycycline after we got the positive diagnosis but it did no good whatsoever. Now he just keeps giving me pain meds and he actually told me today that I have to try harder to gain control of my life!! I couldn't believe he said that. I've gained 50 friggin' lbs. since I got sick and that's just making me even more miserable. I NEVER had to worry about gaining weight before, even at the age of 43! I'm not lazy; I'M SICK!!! Ever since I was a teenager, I weighed somewhere in the range of 100-115, and maybe hit 120 once or twice in all those years. I now weigh almost 170 and I just can't believe it. I never thought I'd weigh this much and I don't even have the strength to go for a walk down the street without gasping for air from weakness and pain.
Also, I live in a small town, far from any good doctors or specialists, and I'm getting weaker and suffering in more pain every single day. I've had bad reactions to almost every antibiotic I've tried and I'm almost afraid to try long-term IV antibiotics because I've had so many bad reactions already. I lost hearing in my right ear from IV vancomycin in '93 and, over the years, I've had bad reactions to Cipro, Levaquin, Penicillin, Sulfa, Vancomycin, Erythromycin, and probably others I can't even think of right now.
I'm like you with the writing. I can still write and I type fast but most of what I do is VENT. I need to be writing a book or 2 or 3. I'm just so depressed and frustrated. I've taken Prozac off and on but I hate taking anti-depressants because they make me feel like a zombie. I KNOW I think more clearly without them but I also know I get depressed and angry and frustrated without them. I don't know which is worse. I need what is left of my brain to try and fight this. I just hope it's not too late. I DON'T EVEN KNOW HOW LONG I'VE HAD IT!! That's the worst part. How much damage has been done to my body at this point? Have the spirochetes already done irreversible damage? Is there any way to really find out?
I'm open to advice from anyone who can tell me what my best options are at this point. Just don't tell me I need to "try harder". I can barely get thru a day now, as it is. I need hope and a miracle. Thanks to everyone who has taken the time to read all this. My medical history is a huge disaster and it keeps getting worse. I didn't even say anything about my opinions of breast implants. That's another very long story. I tried them because of my birth defect and they have been a big part of what led to this disabled mess of a body I have now.
That's enough for tonight. I'm just stressing myself out. Good night all.
Hi Dianne- welcome to the board. I am sorry to hear of all those troubles! Are you on therapy for Lyme? Is it working at all? I am sorry about your experience with antidepressants. I use Zoloft which I guess is more for anxiety than depression but I do not get any of the side affects, I know, we are all different, but maybe you could tray a different med?
I am afraid I do not have much help for you- your experience is so different than mine. If you are a believer in God, I have a strong viewpoint on that that has helped me through. Hang in there.
Thank you...... I didn't expect anyone to respond..... I am seeing a LLMD on the 27th........ I have been tested for Lyme, but I have been on antibiotics for a sinus infection and, I don't know if this matters, the tests were through Quest.
I agree with you about depression. Though this illness made it worse, it did not start with it. I have been depressed for most of my life. It even got so bad that I attempted suicide twice. I also have social anxiety, OCD and Anorexia. Before this illness struck I had my depression under control. I wasn't happy but i had hope for happiness. ( I am taking Klonopin and Welbutrin.) My eating disorder was another matter, I haven't eaten more than 800 calories in about 3 years. I am down to 600 calories a day and many laxatives. Despite an eating disorder I still managed to gain over 30 pounds in a month. ( I have been hospitalized twice because I was seriously underweight. Strangly I was eating more at those times than I am now).
This is one of my biggest problems. Doctor's see my mental history and immediately write me off. I can see it. Their eyes glaze over, they seem bored and can't wait to get on to the next "sick" patient. Not some girl who seems to be depressed or delusional. I know and admit to my mental problems but Physically I have always been healthy. I mean i have survived on a fraction of the food my body demands for the past 6 years. I also overdosed twice on perscription pills (the second time taking over 150 sedatives). I was the strongest one in my family, now i have to ask them to help me pick things up or help me stand up. Needless to say I am the weakest now. Even worse than my sick 80 year old grandmother.
An example of these "qualified" doctors; I went to a pulmonogist bc I was having trouble breathing and i had digital clubbing. They did an x-ray which yielded no results, but the breathing test they gave said I was only getting 50% of the oxygen i should be getting. This doctor turned to me and told me maybe i wasn't getting enough air bc i was lazy or wasn't trying to breath. I mean shouldn't a pulmonologist know that breathing is an involuntary process. I still am amazed at his response!
* This all started back in february of this year when I got what I thought was the flu. (I never had the flu.... not in my whole life). A fever of 103, aches, naseau, vomiting, headache, and basically a feeling of dying.( I have only had a fever two other times in my life!) I never recovered. The fever subsided, but my strength didn't. A month later I developed a rash on my face, neck and back. Over the next month I had muscle and joint pain and stiffnes. Headaches and neck stiffness. My hair became brittle and limp. I had trouble breathing and gained the infamous 30 pounds.
I used to want to get better. Something i desired. Now, I NEED to get better. It's overwhelming and I'm sure everyone here who is or has ever been seriously sick knows what i mean.
Again, thank you all for responding. Though i hoped you would, I didn't think anyone would respond. I wish you all were doctors. We all need more understanding, caring and open minded doctors.
I am sorry you are so sick. You are still a writer. Your post is very well written.
When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
Thyroid disorders can also cause similar symptoms. Some people, including myself, have Lyme and a thyroid disorder. I recommend that anyone with Lyme have their thyroid tested. I suggest that you have your Free T3, Free T4 (besides the T3 and T4) and thyroid antibodies tested in addition to the normal panel. They are not usually done but are necessary for a comprehensive view. If you need help interpreting your results, let me know.
Which Lyme doctor will you be seeing? There are a couple of good ones in NJ. You may want to ask to be notified of any cancellations. Sometimes this can help get you in sooner.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.
Hang in there okay? Do not give up, you will find out what is wrong.
Thank you ticker. I've had hypothyroidism since 03 and am taking synthroid and cytomel. The doctor I saw was Dr. Angelo Scotti and just today i saw Eiras in Jackson NJ. (I'm not sure how to spell it). When you had Lyme which were your worst symptoms?
To everyone here struggling with the loss of "themselves"....you are not alone. Oh my God I understand..I understand.
It was the month before my 22nd birthday when I became infected with this nightmare. But it wasnt until my 27th birthday (Im talking the actual day here...) that I came out of the Drs office with a bonafied diagnosis for a chronic horrid illness which had and would continue to rob me of myself for the rest of my life. It was like being told you were dead on the day you were meant to celebrate your life.
That was 12 years ago. In all this time that has passed I thought there would be new treatments and improvements. I'm 39 this year and I never felt more "lost" in my life.
I was too a writer...artist, singer (thats completely over as this illness destroyed my beautiful voice). That was my "breathing" my reason for living and the joy of my soul. I was an "A" student, couldnt get enough of books and knowledge and excelled in everything. Was fit with long flowing hair, beautiful skin and so much to be happy about. In the years since this disease, I have fought so hard to hold onto a little bit of who I used to be. I remember back in my 20's talking to people in their 30s and 40s who were SO much sicker than I and as sick as I was, I thought things might stay ok for me...until I get well. I might be one of those lucky ones who can get out of this. I cant believe how wrong I was.
I too, was always prone to a bit of depression and Lyme brought it all out full force. As the years wore on I noticed more and more of me changing every day. I remember when I had intermittent joint pain and moodiness, brain fog and digestive prblems and I thought that was bad!
In the last few years this illness has so crippled me, in more ways than one.
I feel like there is no reason to get up in the morning. I lie there thinking, God please I just cant do this anymore, I cant. I open my eyes and Im nauseous. I go to lift myself out of bed and its like a piano is lying across my body. Once Im up, the bones in my ankles take ten minutes to support my weight. I cant feel my feet for a long time. As I walk down the stairs, I want to cry. I cant think anymore. I cant concentrate. Not even on the smallest things. I have severe nerve damage. I cant tolerate any type of loud or repetititve sound. If somone sneezes twice I want to blow their head off. Im always sick, always coming down with this infection or that soar throat, or this unexplained stomach thing, or whatever. I cant remember going 2 consecutive weeks without some horrid virus or God knows what invading my weakened body. But that is the easiest part.
The worst is walking into a room and seeing things on my bed I want to arrange or put away, and I have a meltdown. Like I dont know what to do or how to do it anymore. Like Im suddenly frozen and not able to make small decisions or have any type of normal thought processes. Its so hard, its so scary. You think....I remember who I uised to be...I do...I do....take me back there lord, please.
Tears were streaming down my face as I read many of your posts. I wish there was comfort in the company of this misery, but all it makes me do is ache twice as hard for the others who are suffering. Its such a weird and alienating illness. No one understands. Seems like everyone who knows someone who knows someone who has Lyme either died from it or doesnt talk about it, or is too medicated to know the difference between then and now and it slips somehow into the obscure and unmentionable part of life.
But we are here and we know. And we cry and hold each other up. It's 12:30 and Im fighting the urge to go to sleep. I cant bear to wake up again and do it all over again. I lost my best friend, the man I loved and most of my dreams in the past few months. They were the only things keeping me holding on. It's so hard to move forward sometimes. I dont want to die, but this isnt life. I know what its like to lose everything at 21. I do. I am so sorry. I wish I could make some small difference to someone, anyone. I hope I have just by letting you know how much I truly truly understand. I could sit here all night and type and reveal how the pieces of me have been scattered like a jigsaw puzzle in the wind. I dont know how or where to find them anymore. So all I can do is maybe try to build a whole new puzzle. Maybe the picture wont be quite the same as the original, but its still a symbol of me. The heart and soul behind the illness. There is still a voice here, however small or humbled. And we can still cry out for one another as we are doing. It wont ever be easy, but its what we still have and Im holding onto that for whatever its worth. I hope you do too.
So Im sending all my love and all my prayers to all of you....
On the 25th i turned 22. On the last day I was 21 (oct 24th) I was diagnosed.
Yes, I was diagnosed. In the doctors office i nearly had a meltdown. I was laughing and crying and angry all at the same time. I'm just thankful that i know what i'm fighting. I can be a strong person if i know what i'm fighting.
Jarlena- I am so sorry. Your story is so much like mine. I sing too and even though i don't perform anymore i couldn't lose my voice. For that i am truly sorry for you. Also to go undiagnosed for so long is a crime. You are a real fighter and surviver.
Until you have Lyme disease the magnitude of this horrible disease can't be understood. When you tell someone "I have Lyme disease" they either have never heard of it or don't think it's very serious. My whole family doesn't understand. I don't even bother telling my friends.
I hate that i got this disease. I always find myself saying "what did i do wrong. where did i go wrong."
Ok I'm complaining too much. What treatment is everyone on or what treatment were you on. Also, was is successful? What symptoms persist and'or which have lessened? (sorry for all the questions)
I am currently on shots of penicillin (2.4 million units once a week).
"Live in the moment. If this moment ain't so great then wait for the next one."
Don't walk run to be tested. it took 4 months and ten doctors before an ENT doctor finally tested me . I to knew something was wrong I have three kids and a husband and I would cry if I was left alone My parent Had to Babysit me aswell as my children because it took so long to get the right blood test. I now have a picc line in with IV antibiotics I had all the brain games you mentioned. They did tests and it is in my central nervous system. I am hopeful that this antibiotic work I to want to be the same strong independent person I was. My 1 year old is sitting on my lap as I type one handed.Two weeks ago I would not have even been able to read these blogs never mind respond to them. I had no focus to read . good luck to all
wow! i just turned 22 and you sound like me!!!!! i had an anxiety disorder and depression and was off meds for a few years and then got sick. finally gave into taking antidepressants again to realize it caused stomach pain and that i was still in a lot of pain just happy! lol.
anyways recently my dumb doctor (an LLMD) took me off my antibiotics which i am still symptomatic and i am feeling alot better i still am not productive enough to even go to school though i try. i actualy just filed for SSI and i think my mental health history is going to help me get it! even though its partly for that and mostly for the pain and weakness..
anyways i have bartonella infection as well which goes straight to the nervous system so i started with colds flu and ear infections back pain and four different types of headaches and narcolepsy, it turned into just the worst after like 8 months but i still kept on going. more and more neurological stuff. thats what the bartonella does to you. then i lost my job and had to drop out of school.
anyways i feel like i totally lost everything i worked for when i was working on my depression and anxiety. oh well. i'll start over i guess now with a whole new set of fears. ugh!