Lymes disease...the silent killer everyone should know about...

[Neferet]

I first heard of lymes disease at school...just shrugged it off as a weird disease. My family goes camping in the Sierra Nevedas every summer every since I was 12. I did not know what lymes diease actually was until I GOT it. Several years ago my older sister developed a rash but didn't know what it was. Years passed and she got really sick with all kinds of weird neuro and musculoskeletal symptoms...and she had this pain in the lower abdomen and lady partsl tract..

Years passed and she only grew worst little by little...doctor after doctor would diagnose her having something else. My sister is a nurse practitioner. No one knew what she had...until she did research after research ...and had her blood sent to major testing labs in San Jose...and it turned out she was positive for lyme....she's been on antiobiotics ever since....until this year when she couldn't do it anymore and stopped.

Several years ago I came back from camp and realized I had something hanging on the skin of my right thigh....it looked like a little piece of my skin that had formed.....I rubbed it back and forth..and actually thought it was cute....that's because my younger sister has a little piece of extra skin that pops out next to her ear and I just think it's an adorable birth mark thingie.

Anywase...I never noticed it again. One day I had a huge rash....it was circular and was about the size of a coffee mug rim. "What is that?" I thought...."I don't remember being bitten by anything.." "Maybe I got bit by a spider while I was sleeping." "A mosquito maybe?...No if it was a mosquito or ant or bee sting, it'd itch or be inflammed or something." I kind of shrugged it off...because it didn't hurt, so why go to the doctor?....Little did I know or realize that it was in the exact same location that the "cute" little piece of skin had been.

Years later....Man I was feeling weird. I would wake up with a pounding heart beat and increased respirations. Like as if I just got done running or something. What was going on? Sometimes I had pain that went with it...pain just right underneath my xyhoid process.....and sometimes I felt like I was experiencing a heart attack...cuz I would be breathing..but feel pain and feel like I was grasping for air..at the same time I'd feel blood pulsating in a lump right at the xyhoid. Then I'd feel the pulsating stop and a release feel. And then feel as though I was okay again. "I'm not having a heart attack or heart problems" I thought..."come on, I'm still young..the probabalities of me having a heart attack at this age is low." Then came the auditory problems.....One day I was sleeping...and I woke up to a loud thumping screeching sound...it was definitely the sound of a garbage truck....it was as if the garbage truck was right next to my bed. I got up so confused...what is that sound?....I went out to the front of my apartment and saw the garbage truck unloading garbage from our trash can. It wasn't as loud anymore...that was so weird. Another morning I was sleeping...I woke up to people talking....it was so loud...as if people were talking into my ear...I woke up...and found that people across the street from our apartment were talking...but now it wasn't loud at all?....

Then I started having extreme anxiety...and you guys/gals know that anxiety is already a part of the life of a student nurse. But I would get anxious over NOTHING! I mean I've had more stressful situations before....it wasn't just like test anxiety....it was like DOOM anxiety over nothing...I didn't know what was going on. I thought it was school...but didn't know what in school could do that to me.

Then one day my legs started aching so bad...like burning...icy feeling....legs on fire or something. I would toss and turn and get no sleep. Then very weird things started happening to my viens...it just seemed like I was going insane! I thought I was. I saw my viens change in a matter of months. My viens felt irratated like they were burning from the inside or something. And in a matter of months I started to see viens show in areas of my skin...that never showed before...and I saw some capillary breakages or maybe little viens forming and the skin around it kind of irratated. I wasn't taking any drugs...either off the streets or prescribed or over the counter...This was insane. I think I actually had a blood clot one day. Because one day right below my right ankle the vien started to bulg...and the more it bulged the more painful it got. On one side of the bulge the vein was totally swollen...on the other side it was flat. I thought, "Please God, don't let me die..please don't let this be a blood clot." All I did was held it, I pressed hard on it to try and disperse anything that was there...and it was painful too...pressing/rubbing it made it feel better....even though I don't recommend it, but I didn't know what to do. After less than a minute of pressing it I felt the bulge let go, and

blood started to flow again. I was going to go to the emergency room but I felt so stupid...because I don't even know if they could tell what's wrong. Or maybe they'll just say I'm on drugs or something...my husband saw the whole thing though.

One day I saw all the veins on my thighs as if they were enlarged, and I could see blue veins showing across my thighs...I was so scarred..they were so obvious. I think it just drew me into a panic attack and I had to go to the hospital. When we got there the doctor said nothing was wrong and that showy viens were normal in some people. "You don't get it" I wanted to scream, "they weren't here yesterday!" Or the days, months, years before that. I wasn't about to be labelled as a psycho cuz I had no proof so I kept my mouth shut.

Then I had major neuro problems in my legs. They started to hurt big time. It came to the point where I couldn't walk to school anymore. If just felt like blood wasn't running through them anymore...and my legs were becoming numb. This was the time i was in medsurg too..that didn't help. And my veins were bulging easier and easier...and finally after a few rounds standing in the OR...my lower leg viens became a permanent bulge. I'd have to elevated them now and days...

I went to a doctor in town...and he tought I was a pyscho...he literally wrote down nothing except "anxiety." And at that time I wasn't even having any anxiety at all. My legs were hurting and I just wanted to know what was wrong. He thought I was making it all up and treated me disrespectfully as if I was making things up. He told me that I didn't have pain in my legs. I was so angry...Is he me or what? Dissappointed too because the person I tried to trust doesn't even believe what I said I was hurting.

I told my sister and she finally told me that she believed I had lymes disease. I saw a nurse practioner who knows about lymes and she tested both me and my husband and I was "negative" while he was "positive." But he however has no symptoms...this is insane! I told the my nurse that I never recalled being "bitten" by a tick, or having a "bull's-eyed" rash. What made me fustrated was she looked back in my medical file to see when I had reported to the doctor that I had pain...and guess what she found? No complaints of s/s but only "the patient has anxiety." That just screwed up my whole subjective medical history. He could have at least written that I complained of pain in leg. What a rip off. So I had to guess when exactly did I have it, where and blah blah blah...which was NOT good for prognosis...because it usually helps at least to know how long you've had the diesease, or the stage of the diesease you're at.

I took Doxcycline...that sick drug. I hated it soo much...I took it wrong and it burned holes in my stomach and I threw up blood.

I had to wear gloves, cover my arms and wear sunglasses while driving 45 minutes to clinical. And this was in the summmer. I gained so much weight. I had to eat big meals in order to keep the meds down. Anything less than that, I'd throw up all the meds and the meal.

Man and then I was soooo tired. I started sleeping in my classes. And even though I've had a full night, I could sleep all day. Which was strange because usually if I slept more than I needed I'd wake up with a huge headache. My body became limp and weak. I started having very vivid dreams. I rarely even fall into REM anymore. How sad...I probably do..once in a while..but almost every night I'm like half dreaming half awake or something. I've finally noticed how important REM sleep is now....after that whole semester of my pysch teacher trying to pound it into our heads...it seems I've finially come to appreciate REM sleep totally now...but now it's too late....I feel like I'm constantly in a fake sleep mode. Like a computor that hasn't been turned off, it's just in sleep mode. I'd give anything to feel those sleepy sleepy summer slumbers again.....Even though I was constantly sleeping...it was not because I was sleepy...it was because my body was so weak I had to rest...my neck was sooo stiff...I kept hearing that people with lymes disease get stiff necks...and I did not know what it was until I got it....also brain fog too. I did not and I bet no one will ever totally understand what brain fog is unless they've had it. It is truely brain fog. It's like thoughts are foggy and you don't care or you're not interested or something.

Doxy got too bad and my stomach couldn't take it. I started having major digestive probs and felt my upper right abdomen pulsating. I really had painful times with it especially after a meal. I was constipated...had fatty, pale stools...went to a GI doc and he said that liver enzymes are high and I had some thick inflamed gallbladder tubes.....did some tests....I couldn't take the doxy anymore so I took amoxicillin and cholesytramine (my sis said it would help detox me)....

next time I came back to the GI doc my enzymes were down, and gall bladder was fine...these results flutuated up and down for months...I do routine blood draws for months. He thought it was something else...but decided that it was probably lymes like I said because he saw the ups in down...which just drives some docs crazy sometimes....cuz they can't figure what's going on. They're SURE it's one thing...but find out it's not what they thought it was.

Now I'm better than before. My nerves are messed up though. When someone touches my legs it never feels the same as it did before. I did went to a neurologist a few years back. But all he did was make a laughing stalk out of me. He didn't believe in lymes..and thought it was something stupid people believed in. Some kind of made-up wacko diagnosis. He thought I had something else and was deteremined to find out....soooo...he did this test on me where he poked my skin with needles and stimulated the muscles/nerves......and then he took MRIs and whatever and did neuro assessments. Everything turned out "FINE." He said I have a better spine that he did...Whatever...he's such an idiot he made me look like a fool in front of another person. I thought I was so stupid to let someone like this take care of me. Someone who doesn't believe that I'm having pain, or feeling this or that.

Anyways after years...I'm finally starting to get better...oh yeah did I mention that I was getting memory loss during my final months of nursing?...that was bad. I couldn't retain anything...and one day I started to forget things...I literally forgot my father-in-law's name..it took me three minutes to remember it. And then I would be driving somewhere and would forget where I was going or if I remembered the destination I'd forget how to get there. I'm a great reader. And it upset me...because it seemed as though I begun to have trouble reading. I'd have to read a sentence 2-3 times to have it processed. So you can image how the last days of nursing could be challeging to me. My nurse changed my meds...cuz it wasn't working. The bacteria was getting to my brain. After that symptoms got better and improved.

Now I have no more symptoms except the vivid dreams which bothers me. Dreams so real that...and it's nightmares too sooo....it makes it seem so real. I'm okay..still taking drugs...but it's ruining my liver. I'm slowing being taken off the meds now. My sister recommends not taking a person off of antibiotics until they go a full three months without symptoms.

I don't know if the dreams count.

But my sister is still hurting. She has this thing that I guess my idea of it is like a yeast infection. but she's been to all the docs...no infection detected...nothing....

The final semester of nursing we had to do some kind of skit on a medical diagnosis. I stayed away from signing up for the lymes skit because I knew it'd be too emotional for me...and I was still trying to figure things out because the whole thing was so confusing and such a mess. So some other people signed up for it. And they kind of made it into somekind of camping joke skit. I felt terrible...because that was my opportunity to teach my fellow nurse classmates about lymes diease and about how it has effected my life. But instead...year after year lymes disease is passed on as myth, a joke. Imagine a person who has cancer who watched a skit being done about cancer and it turned to be a comical play...A joke about people who had cancer. I wasn't upset at them. I just felt sorry that they didn't take it seriously.

Nurses and doctors these days know so little about lymes diease. People know little UNTIL they get it....or until it's too late.

Lymes is dormant cyclic disease. It creeps up on you. People die from it. They get disabled, ...smart people become mentally challenged. And when the bacteria is thriving/dying...one thing it produces is this toxin that screws up the human body. The only reason why people are suffering is because not a lot of people know about enough to educate others.

I miss camp soooo much....but at the price of my life....and seeing my sister still suffering....I've tried to wave goodbye to embracing the forest trees....it's soo tempting...any summer now I want to go back. But I hate that tick and those bacteria that have taken out a piece of my life and my health....I'm sick of it...that something soo small can bring so much suffering to people like my sister and other people.

Just in case you were wondering how I ever figured out how I got lymes diease....just this year a friend said that he got bit by a tick....we dicussed how the tick looked like....and he said, "it was small, looked like a piece of my skin." That's when it dawned on me people.....that's when it dawned on me....little piece of skin, rash on the same spot sometimes afterwards...and plus a whole truck load of life deteriorating symptoms...

I hope that this will get you motivated to do more research on lymes diease so you can better serve your patients, those you love around you, and also yourself.

This is all for you nurses!

-Neferet

P.S. This is what I learned in school..."never tell a patient that they are not feeling pain."

[Silverdragon102, BSN]

sorry you have had to go through this, thank you for writing about your experience

[RN28MD]

thank you so much for writing about what happend to you. You have made me pick up my journal about lyme dx. I will definetely read it. . Thanks and good luck

[ohmeowzer RN, RN]

i developed lyme disease when i was about 7 . i always played in the woods behind the back of our house. one day my day found a tick behind the back of my neck under my hair , at the time he did not know better and tried to burn it out, but it was buried so deep they had to take me to the hospital to have the dr take it out. i never felt well after that. we moved back to NY and within 6 mos i was so sick i couldn't get out of bed or walk. i was bedridden along time. i was so dizzy and weak. back then they thought it was the flu. i eventually just got better , i don't think i was ever put on antibotics.. i just lived by chance. but growing up i always have had neurological pain and devleoped fibromyalgia ( although sometimes i think it's still lyme diease rearing it's ugly head ) this is 30 year later.i've been on antibotics for other illnessness including doxycyline .. i do have nerve problems and panic attacks.. i tend to think they might be from the lyme diease.. who knows .. it's been years .. lyme diease really never goes away. thank you nefert because it made me feel i am not alone. that was a very educational post.

[bakpakr]

I am a long distance backpacker and have known about lyme for many years. One problem I have found is that most health care practitioners are not aware of the symptoms and make wrong diagnosis's. I have told many friends that if they even suspect they have been bitten by a tick to strongly request a lyme test. I myself have had to do that and luckily so far have been negative. When caught early it is easy to cure. But keep in mind that there are so many variants of lyme that one negative is not a sure thing that you are negative. Also in it's early stages it is harder to detect through a blood test. So if you think you may have been bitten by a tick and are showing flu like symptoms and also if you have a rash (erythema migrans) tell your md.

http://www.cdc.gov/ncidod/dvbid/lyme/index.htm

[loriann, BSN, RN]

This is an interesting post and thanks to the OP for sharing her story.

A few years back, I was camping and was bitten by a deer tick. I developed the classic bulls-eye pattern, which was posted at the camp site. I went home thinking nothing of it and after a week, I started to notice a tingling feeling in my feet, especially when I went down stairs. I went to my doctor's office and was seen by an NP who thought it was Lyme's, but had me see a dermatologist in the office to make sure. He was "convinced" it was a spider bite, even though the red bullseye returned. He gave me a topical cream and sent me away.

One week later I started hearing buzzing in my ears and couldn't feel my legs. My MD became upset when I contacted him and referred me to a neurologist. The neuro MD did an MRI, did blood tests and decided I needed to be referred to a psychiatrist. I told him he was crazy and went back to the NP. After telling her the entire story, she pulls out a prescription pad and starts writing for ABX. I took them for 30 days and slept for about a week.

This entire situation happened over the course of 5 weeks. Thank God for that NP and that this didn't go any further. Lyme disease is definitely overlooked, even in the northeast where I live. What really upsets me is the number of stories that I hear where a patient's complaint is shuttled off to a psychiatrist for assessment!

To the OP: I hope you are feeling better. Thanks for bringing this up.

[Neferet]

thanks so much for your comments. I placed my life in God's hands...what else could I do? I'm okay. But my sister is still sick...I think the antibiotics didn't help for her.

If you've been bitten and still feeling symptoms...please go see a lymes doctor or anyone who KNOWS about lymes....the bacteria works slow...but nerve damage is pretty permanent. It's sad because it's like cancer...people don't want treatment ...until it's too late in the process...then it's probably gets too late to help permanent damages.

Thanks for those who've educated themselves on lymes...you can help your patients better....

[Neferet]

Oh yeah,...if your doctor prescribe 1 week of antibiotics for lymes.....RUN! Because the antibiotics should be taken until there are no more symptoms for at least three months....otherwise, those antibiotics won't work anymore..

Best drugs for lymes I've taken so far is Doxycyclin....it's a real pain....it's my enemy and my friend. My friend because it's killing the bacteria that's degrading my body....and my ememy because it's making my liver work hard and also it burns holes in my stomach and makes me nauseous when I eat, drink, smell,...or even just breath. I heard that some people with really bad lymes wish they'd have cancer instead. I'm sad for them.

[CRNI-ICU20]

Thank you for your post!

So often, patients are treated as "FAKING" their symptoms, because many times these symptoms are so nebulous and in constant change. When doctors don't know what is wrong, they OFTEN refer a patient for psychiatric treatment, as if to say "your problem is in your head!"

I read once about fibromyalgia patients who often get treated this same way, and it is not uncommon for RA patients as well, to see more than 11 doctors before being correctly diagnosed. This is so sad.

In cases where there is a "bug" bite, or a rash of unkown origin, it is often much better to seek out an infectious disease specialist, rather than a dermatologist. That way, if there truly is something attacking the whole system, they most certainly will find the root cause, because they are trained to do so....most dermatologists focus on skin cancer, psoriasis, and acne....they have no real strong training in systemic disease processes....

I hope you continue to heal and regain your health.....

blessings,

crni

[Neferet]

Thanks everyone for your postings..

I've found the link to one of the great lymes resources. It teaches you how to assess the lymes patient in the late stage of the disease cycle...try to look for other resources on early stages..:

http://www.mentalhealthandillness.com/tnaold.html

An assessment form is included on the page also and I highly recommend it for any lymes diease patients. Download the Excel format of it. When I first printed the assessment form I barely had any of the symptoms listed...I just marked "no" on those I didn't have. Then last year I found the list again in my file drawer and went through it again marking "yes" on the ones that I had. There was a lot more yeses than nos the second time. I'm not an expert on lymes...but I did it just to keep track of own symptoms..because there were so many on and off.

Don't forget to keep a daily diary of symptoms or record the day you started to have each symptom.

Denial is the easiest way out. Sometimes I still find myself trying to deny that I have lymes. And then when I remember how much pain I was having...and how my nerves are all messed up now...and just everything. I can't deny it.

I hope that you do read the link....it's so much more info than other basic lymes sites. And I think this doctor has written more stuff...you just need to look for it.

[Neferet]

Lorianne...are you doing better now?...