I am a 52 yr female. Work from home as a counselor, show and breed dogs. I started feeling really tired and had this "pain" that seemed to just go here and there, heart palpations. They said it was "nerves" and put me on Xanex. Things got worse, in May I lost 10 pounds in about 5 days, really, really sick. Went to my NP whom I adore.. she thought it was Lyme, inital tests indicated possible- the blot and the other tests came back about 10 days, positive for Lyme.. she had already given me Doxy and pen, and some percosets for the horrible pain. Now it's the end of August. My whole life has changed. I have some 'good days' but when the pain and fatigue hit, it's so bad. I started to believe that I was "crazy" because everyone kept telling me that I was 'cured', that Lyme is easy to treat.. ummm.. sure ok.. I feel ashamed that I cry everyday now, because my body hurts so bad on my "bad" days. I am afraid to leave the house, cant do my dog shows, bec if I get a "bad day", not sure I can function, let alone drive home. I finished another round of penicillin about 2 weeks ago, for me it seems like a week-10 days after the atb, i am slammed back into almost constant symptoms. Stiff neck, spine, back, knees, shoulders. It is messing with my head, that is for sure. I was a super active, happy person. Now I sit and cry, hunched over because my back hurts so bad I can't hardly breathe. Forget about food.. i can barely eat, I drink "ensures" to try to stop losing weight. I was 126-132, I am down to 115. I have had tick bites my whole life, never, ever worried. I had a tick I pulled off early march this year, they THINK that may have been the beginning but who knows??? I walk into walls, my arms go numb. So far my vision is fine. I feel like my life is slipping away, like I am disappearing, and the doctors (or some) seem to treat me like a mental case, or worse a drug addict. The pain pills help, sure they do, but do I get high? Not even close, they make it so I can take a shower, maybe set the table.. When I found this site, and read some of the 'stories', I felt relief, and fear, hard to explain. I realized and I am determined NO ONE, NO DOCTOR is going to make me feel like it's ME.. I feel like a person that has committed a terrible crime, like I have to pretend I am fine. I have had my NP say, well gosh you sure look good.. WTH? Maybe I had a good day.. maybe I am a great actress...I am tired of pretending that nothing is wrong, that I don't wake up in the night, fighting pain, or collapse at noon, just to lie down and pray, just pray that this pain moves away for even an hour.. it feels good to post this, and I know there are so many worse than me, I pray for you all. Thanks for listening~~~
Posted by dmc (Member # 5102) on :
Needed to break it up for neuro lyme. We can not read long paragraphgs...becomes a blur.
I am a 52 yr female. Work from home as a counselor, show and breed dogs. I started feeling really tired and had this "pain" that seemed to just go here and there, heart palpations.
They said it was "nerves" and put me on Xanex. Things got worse, in May I lost 10 pounds in about 5 days, really, really sick.
Went to my NP whom I adore.. she thought it was Lyme, inital tests indicated possible- the blot and the other tests came back about 10 days, positive for Lyme..
she had already given me Doxy and pen, and some percosets for the horrible pain. Now it's the end of August.
My whole life has changed. I have some 'good days' but when the pain and fatigue hit, it's so bad. I started to believe that I was "crazy" because everyone kept telling me that I was 'cured', that Lyme is easy to treat.. ummm.. sure ok..
I feel ashamed that I cry everyday now, because my body hurts so bad on my "bad" days. I am afraid to leave the house, cant do my dog shows, bec if I get a "bad day", not sure I can function, let alone drive home.
I finished another round of penicillin about 2 weeks ago, for me it seems like a week-10 days after the atb, i am slammed back into almost constant symptoms.
Stiff neck, spine, back, knees, shoulders. It is messing with my head, that is for sure. I was a super active, happy person.
Now I sit and cry, hunched over because my back hurts so bad I can't hardly breathe.
Forget about food.. i can barely eat, I drink "ensures" to try to stop losing weight.
I was 126-132, I am down to 115. I have had tick bites my whole life, never, ever worried. I had a tick I pulled off early march this year, they THINK that may have been the beginning but who knows???
I walk into walls, my arms go numb. So far my vision is fine. I feel like my life is slipping away, like I am disappearing, and the doctors (or some) seem to treat me like a mental case, or worse a drug addict.
The pain pills help, sure they do, but do I get high? Not even close, they make it so I can take a shower, maybe set the table.. When I found this site, and read some of the 'stories', I felt relief, and fear, hard to explain.
I realized and I am determined NO ONE, NO DOCTOR is going to make me feel like it's ME.. I feel like a person that has committed a terrible crime, like I have to pretend I am fine.
I have had my NP say, well gosh you sure look good.. WTH? Maybe I had a good day.. maybe I am a great actress...
I am tired of pretending that nothing is wrong, that I don't wake up in the night, fighting pain, or collapse at noon, just to lie down and pray, just pray that this pain moves away for even an hour..
it feels good to post this, and I know there are so many worse than me, I pray for you all. Thanks for listening~~~
Posted by Dekrator48 (Member # 18239) on :
Hi, and Welcome Christie!!
You are not alone!!! You are not crazy!!!
The good news is that since your symtpoms started in the last several months, instead of years, the likelihood of your recovery is very good, IF you see a Lyme literate MD quickly and get proper treatment.
You can find a LLMD on the Seeking a Doctor Board.
You also need evaluated for coinfections like Babesia, bartonella, ehrlichia, etc.
The best thing you can do is read, read, read, and come here for support. Go to the Medical Questions board also and read and post.
Thanks for praying for all of us....I will say a prayer for you.
Feel free to check out daisyrlb's weekly "God Thought" thread here to find additional spiritual support.
Welcome and as you see, alot of us agree with your post.
Have you located a LLMD? Your doxy dosage may not have been high enough for theraputic benefit. Needs to be 200mg 2X day.
Pain is horrible, and exhausting. Lyme is a rollercoast of symptoms & emotions.
You don't say if tested for co-infections. A great primer on lyme & tick diseases is the downloadable/printable green booklet from http://lymepa.org
Find a LLMD, a doctor who understands the complex dynamics of Tick Borne Diseases.
Will send you positive thoughts, & will pray for strength for you.
Posted by aklnwlf (Member # 5960) on :
Welcome Christi. So glad you found us here at Lymenet.
This website was a life saver for me.
I came here back in 2004 before I was diagnosed with Lyme and Co's.
Search here for all the info you can and it's the best place for support and encouragement.
Posted by LightAtTheEnd (Member # 24065) on :
Welcome, Christie!
We've all been through experiences resembling yours in one way or another. You are definitely not alone.
Your increased pain and symptoms 7-10 days after starting an antibiotic sound like herxing. This is when you kill off a lot of bacteria, and they release a bunch of toxins into your body, which makes all your symptoms flare up (and maybe causes new ones) until your body can get rid of the toxins.
Please RUN to an LLMD associated with ILADS (www.ilads.org). Do not go to an Infectious Disease specialist associated with the IDSA unless you want to be verbally abused and then get worse.
"I feel like a person that has committed a terrible crime, like I have to pretend I am fine."
I remember the absolutely astonishing feeling, once I figured out on my own that I had Lyme, of realizing that I felt ashamed of it, like I had done something wrong to get it.
Why are sufferers of this disease treated as bad or worse as people who get sick through unsafe sex or shared drug needles? (I am not condemning them--just observing that people with those illnesses also get unfairly made to feel ashamed by others.)
All I did was get bit by a BUG, for goodness' sake.
The truth is, it's just a bacterial infection like any other illness, and it's no fault of ours that we are sick. (Unless you like to play with ticks and let them bite you on purpose, haha.)
The fact that we persist in searching for treatment to get well and to get symptom relief, after everybody keeps telling us we are crazy, imagining things, faking or making it up, is a sign that we are intelligent human beings with a strong survival instinct.
There is NOTHING immoral about asking for proper medical care for an illness.
We should NOT let others make us feel ashamed for getting sick.
The crying all the time, besides being an understandable reaction to being refused help for your suffering, is a physical symptom of Lyme and/or coinfections.
It happens to me for a day or two every once in a while, usually in the days before my period when Lyme tends to flare up. I just wake up, sit down to breakfast, and start crying. And then everything makes me cry all day.
My brain, searching for an explanation, decides that I must be crying because I'm all alone and nobody loves me, my friends hate me now, I am so sick and not getting well, etc. etc. But really, I'm just crying because my brain chemistry is all messed up.
Then a day or two later, I go to bed and sleep, wake up the next day, and I feel fine. No urge to cry at all, or a small one for appropriate reasons, in which I can cry briefly and then stop. When the symptom has me in its grip, I try to stop crying but it keeps starting again.
It took me several episodes, and nearly alienating all my friends and family, mistakenly thinking that I was upset because of something they did or said. I FINALLY figured out that it was a physical symptom of the disease. Then I told all my friends and relatives that if they heard me talking like that or crying all the time, they should ask me, "Are you having a bad Lyme day?" So I could remember it was a symptom, and either go sleep or do some detox, or at least stop blaming other people for making me miserable and wait for it to pass.
You could have gotten that ill from the tick in March. It is also possible, if you had Lyme and/or coinfections for a long time, that they could have been dormant and then reactivated by a new tick bite. People report getting much sicker if they already have Lyme and then get bit by another infected tick.
It may take you a long time to get better, but you can recover from Lyme and feel the same as you did before it. Don't give up hope, and do go to an LLMD, quick. (Quick is relative--you may have to wait several months for an appointment, but if so, then ask to get on a waiting list for cancellations.)
You will probably have to travel a long way and pay out of pocket, as most of us do, but it is worth it because an LLMD is the only doctor who can help you get well.
Posted by MDW005 (Member # 22706) on :
Hi Christie,
Please don't be ashamed of crying, I understand. I was just told a couple days ago, that God made tears for a reason. It's ok.
And you are not crazy. We are here for you anytime. I am praying for you and that you find the right dr. to treat you properly. Dekrator gave you some great links. This can be overwhelming at first and we are a team here and will get you moving in the right direction for your healing. Take care and big hugs to you.
Posted by Lymetoo (Member # 743) on :
Hang in there, sweetie!! You are herxing your head off and it will slowly get better .. but that could take awhile. Sounds like you've had this a long time.. but the last bite sent you over the top.
Go here to find a Lyme specialist. You definitely need one. The doxy will cause you to have nausea and to lose weight... so let's get you on something else that will be less "horrible"!
MOVING TO MEDICAL QUESTIONS FOR MORE HELP....
Posted by ChristieL (Member # 27786) on :
Thank you all so very much.
My apologies for not breaking this up.
It meant so very much to hear your words of encouragement.
I am so glad to have found this site.
Thank you for the links, I am trying to work my way through all the information.
I just wanted to say from the bottom of my heart, thanks! Love and light to all~~
Posted by Lymetoo (Member # 743) on :
Glad you found us!! Great group here for helping new folks!
Posted by Andie333 (Member # 7370) on :
Welcome, Christie! Thankfully, you were able to get your Lyme dx pretty quickly, which can really help improve your chances of a full recovery.
This site is an invaluable resource, but with Lyme, it can be easy to get overwhelmed.
Take it slowly and easy, and be gentle with yourself.
As you're seeing, this can be a brutal disease.
Andie
Posted by arkiehinny (Member # 26546) on :
Welcome Christie, from a fellow Arkie who contracted Lyme from your neck of the woods! WE are very, very much alike in many ways.
Don't give up, keep fighting. Find an LLMD today, make an appointment & keep your Faith. We will all be here for support.
I'm sending you a PM.
Posted by kidsgotlyme (Member # 23691) on :
Welcome to the boards!!
Posted by littlebit27 (Member # 24477) on :
Welcome ChristeL, I didn't read all the responses, although I read some.
I just wanted to say that I understand how it feels to be treated like a drug addict. None of those pills make me "high" they make it so I can go at least 30 mins-1 hr without pain. Sometimes it just makes the pain a little more bearable. I get it. And I hate it too.
Posted by dali (Member # 24458) on :
Hello,
Your description of the emotional toll is heart wrenching-but it is very accurate.
It takes alot of energy sometimes to "act" as though one feels fine in front of others...it is a very strange phenomenon I am just starting to begin to understand.
Yes, there are just bad "lyme" days and it is hard for the people around us to understand because we often don't have a raging fever....actually almost never.
As difficult as it seems right now, it does seem like your body is responding to the antibiotic treatment-that is good news.
You will get through this-find an LLMD and keep working with the ND to keep the immune system up.
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