posted
ever feel like your crazy? nobody believes you? well that's where i am today. this has been going on for over a month now and i feel like a sanitarium would be a welcome vacation.
i don't have an appt with a llmd until mid-sept. every day it seems it's something different. new aches, pains and symptoms and then they go away and then i wonder if i'm imagining it or what. and i think god, hope it's not terminal, then the aches and pains move and go away etc....mornings are worse, i wake up stiff, my right arm is weak and i pray i'm not going to fall when i get out of bed. the insominia happens every night but surprises me as i'm more fatigued than i ever been. not anemic, blood tests proved that, nope not thryoid or b12 or folate negative, negative.
i think the worse part is, i'm not me anymore. i walk around in a fog or i pace, i feel like i lost my personality.
sorry i just had to whine. my dh went with me to the neuro and when she said, we can't find anything, he's like see, everythings fine....tues i'll go for my vertigo study. should i go to my pcp and say hey i want to get treated for lyme anyway, i know your test said negative but their proven to be wrong treat me on my clinical symptoms.
even though there's so many things pointing towards lyme, sometimes i think, god i'm crazy i'm in denial it's something else.
anybody ever feel like me?
karen the tired nurse
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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I am so sorry your feeling down in the dumps.. I can relate..been there many times..
I would say that sometimes it takes for you to take a stand for a dr to listen to you and I mean really listen...
Like i have learned its up to only you when its concerning your body..you are your only advocate make them hear you.. Make them listen.. if not move on to the next.
just my thought on it anyway..but then again maybe i am crazy i did fire my duck LOL
Hope things look up for you..
Hail
Posts: 29 | From Maine | Registered: Jul 2006
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posted
karen, I'm glad you have an appt w/ an llmd. rest as much as you can until then. laugh and be good to yourself.
I'm sorry you are having a difficult time, and the drs you are seeing can't help you right now. Many of us here have been there before, and are familar with your frustration. The best thing your can do is stay as healthy as you can, and rest, read and learn.
A whole bunch of folks here will read your post remember, and pray for you. I hope there are more easier days than harder days, and I hope you are surrounded with love.
Posts: 663 | From NH USA | Registered: Sep 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Karen,
I think most of us who are on this board who have confirmed Lyme have been told my multiple doctors that nothing is wrong with us, or we were misdiagnosed with MS, or just told to go to a pain clinic or whatever.
And of course we know that something is truly terribly wrong, and that went from a healthy person to a very physically ill person.
I wanted to comment on one of your other posts (sorry, I haven't had time to before - I believe my elderly father was bitten and has Lyme - four years after I was. Now I'm battling his doctors who don't believe him any more than they didn't believe me).
Anyway, you had mentioned you in a previous post that you wake up at 3:00 every morning. I did too in the 18 months I was symptomatic with Lyme but didn't know what it was.
At first I kept writing it off in terms of Chinese Medicine (I had done acupuncture years ago), because the time of night that one wakes up can correlate with a particular organ/meridian in the body. And I was so sick at that point, and no one could diagnose me, that I tried figuring it out using other non-Western methods. Or I wrote off the 3:00 a.m. thing as some pre-hormonal thing.
Well, once I found my LLMD and had my initial consultation, he mentioned that waking up at 3:00 a.m. is very typical with Lyme. He mentioned something about some of the European Lyme doctors talking about this.
Well, I know from the European Lyme patients on this board that few can find good Lyme doctors so who knows if it's a European Lyme concept. But it was so interesting to hear that.
Maybe others can chime in with what time they would awaken before diagnosis or still do.
Take care - whatever the diagnosis ends up being, I know what you're going through. I got the same disbelief from doctors many years ago when I had Chronic Fatigue Syndrome (before it was called that).
And you're in New England were at least Lyme is recognized more than here where I live! I hope the doctors will help, but like most of us here, I had to be my own detective and make my own diagnosis and find a doctor who confirmed it.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hey,
Yes, I have felt that way...I also remember waiting for the time for the dr appt to finally arrive. Feels like forever when your life is on hold trying to get a diagnosis of what is wrong and a plan for getting better.
I am sending up a prayer that you will get in sooner due to a cancellation. and that the dr will get to the bottom of things for you.
I empathize with you. It is horrible feeling that way. Here is where the depression comes in. You will be okay and I too, hope that you can see the llmd sooner than Sept.
Hang on. This is a tough ride. Rest, hydrate and read all you can about herxheimer reactions.
Never be afraid to reach out.
Sincerely
-------------------- Lymester Posts: 519 | From CT | Registered: Jun 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Karen,
Your post really touched me, because I remember so clearly feeling just the way you described. I'm so glad you've got an appointment with an LLMD, but like you, I also had to wait about a month.
In that time, I had a lot of symptoms come and go, as well as crippling depression and exhaustion that seemed to get worse by the way.
Mostly, I was struck wtih what you said about not feeling like yourself anymore. I had exactly that same feeling.
Getting a diagnosis is helpful, because then you know you're not just crazy. Btu the whole thing takes time, depending on how long you've been undx, and whether you have any co-infections (most of us do). For me, I started really starting to feel a bit like myself after being on antibiotics for about 10 months. Each person is different, though.
One thing you might want to do is start keeping track of your symptoms at the end of each day. It can be a good thing to take with you to the LLMD at your first appointment. Also, the record can help you have an objective sense of how you're progressing.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Carol B
Unregistered
posted
I remember so clearly how I felt when I went to my second LLMD appointment by which time my bloodwork had come back-and there it was in Neon lights- POSITIVE POSITIVE for lyme disease even by CDC criteria- I CRIED in the office- with relief-imagine being releaved to be diagnosed with Lyme.
But it suddenly meant I wasn't CRAZY-and everything I had been experiencing made sense.Then I got angry at all the doctors I had seen in the previous two years who brushed me off. Jerks Idiots Ignoramuses
Anyway- you can and will make it to your LLMD appointment-just take it one day at a time, and as had been suggested keep a symptom log- day by day.
I feel really fortunate my bloodwork did come back positive, although I believe the LLMD was convinced I had lyme just by the clinical symptoms and would have treated me for lyme anyway.
Insomnia is the pits- I hated the nights- the long long nights. I was also in therapy at the time, and I can remember sitting in her office crying because I was so tired, and so sick of being sick and tired and knowing there was something wrong but didn't know what.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi FPN. A drag you have to wait so long for your LLMD appointment. Since you're continuing with all your other non-LLMD testing in the meantime, why don't you get that IGeneX western blot outta the way? Tests #188 and 189.
Sure would give you some peace of mind!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Hi everyone, Im a newbie, and I just read your message. But on the bright side you have an appointment with a LLMD. I still can not find one that will take me. I live in so. calif and the only two that i know DR. Y is not taking new patients and dr. H I can not get a hold of. I leave messages after messages and no answere meanwhile Im getting worse day to day and the life quality is 2 out of 10. I can completely understand where you are coming from but at least your on your way. Im still in limbo and losing hope I can find anyone to help. The sad thing is I actually have the test kit from the IGeneX lab for the panel 5010 and they suggested the 203 i think. but no one to authorized it to be done. no one wants the resposibility to take me on as a patient. I have kaiser insu. and that is a joke. There tests always come back negative. Im a mother of three and a wife and home life if filled with extrem stress from me being sick allllllll the time. hang in there your on your way.... Terri
Posts: 45 | From Redlands, Calif | Registered: Aug 2006
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bettyg
Unregistered
posted
Karen, sorry to read your post; NO, you are not crazy; you've just joined this great group of lymies although without being diagnosed yet.
DEMAND being tested by Igenex for western blot igm & igg; download their form; have your MD sign, date, & put a DIAGNOSIS CODE on there for insurance purposes..it does NOT have to show LYME DISEASE! Hang in there; we are here 24/7; someone is always on here! Prayers to you. Bettyg
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posted
I've been going through the same thing for 15 months now. I'm a nurse too and I don't think us health care people handle things too well. We read into everything. I have all the same symptoms you have and too many more to list. I was convinced I had MS despite all negative test results.
I finally went and saw an MS specialist last week who said no MS. So I finally believe it. My symptoms are very MS-like. He was concerned about lyme though, considering my history of bullseye rash, neuro, infectious symptoms etc....ordered another test. I'm sure it will be negative as always. They will say no lyme.
I wasted a lot of time seeing general neuro's etc...All I can do now is stick to my llmd and hope I get better.
I personally think a key indicator of lyme is horrible symptoms and all "normal" test results.
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
When you are in a bad patch... take it one moment at a time. The weird thing about lyme is the changability of symptoms..
In the morning you feel such pain that you may need to call 911 or you will die alone in your bed, then in a few hours you wonder what you were thinking and you tell yourself it was just a slight blip in neurological universe so you go to visit a friend and act fine--but are exhausted.
Then you wonder why suddenly there is an ice pick in your temple and you walk like a 98 year old woman. The next morning you are pretty good.
So, you plan for lunch with your husband but you are late because you went ten miles past the exit and got lost in your own town. You lie to him about why you are late because he would'nt believe you.---and you don't believe yourself.
Later you have difficulty breathing and suddenly you are overcome with violent nausea and there is a charliehorse in your bladder. You pray will will be able to sleep.
Now you cant trust yourself or your body because it has been invaded by aliens. You get all kinds of medical tests but are declared perfectly fine.
You live in fear of the next horrible symptom, you stop making plans and your friends stop calling cause you are a mess. You cry a lot, contemplate packing your bags and running away.
Now you know what it is like to be a lymie. Of course, not all people experience all these symptoms or this level of psych stuff but I did.
Even after eight months of treatment, I still have many symptoms but now I know what it is and lymenet friends to validate me. Doctors who understand.
There is a light at the end of this tunnel if you stay with your treatment and put yourself first.
You will be well again...PM me if you need moral support..
-------------------- We are spiritual beings on a human journey...
I agree with humanbeing. Take it a moment at a time.
I say to myself: This is not me. This is lyme. Just hang in there. It will pass.
I don't know if I would have been able to get so far without this board. I found it after 5 months of tx and I thought I was going to die.
Use us here to vent, ask questions, just anything to keep support.
No one else knows how crazy and awful this disease makes you, and how up and down (like humanbeing's post describes).
Also when you have an experience or question, use the search engine here and look. Many, many over the years have posted the exact same questions or issues . . . this is a rich source.
Hang in there.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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quote:Originally posted by pattilynn: I personally think a key indicator of lyme is horrible symptoms and all "normal" test results.
I agree! Anytime a newbie says all tests are negative, I'm more convinced it's Lyme.
Patti.....is the test from Igenex?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Karen,
My Lyme journey took 17 years for a diagnosis. For many of those years, I didn't even realize I was sick.
But, in the final 2 years of the journey, I knew there was something systemic. I knew I was sick.
I had extreme hand and wrist pain as well as shoulder pain. The answers I got from doctors were either (1) it's tendinitis and will go away when you stop using your hands or (2) I have no idea what's wrong with you.
I finally went back to the orthopedic doc I saw in high school when I had my first symptom - chronic recurring water on the knee.
This doctor gave me the best advice. He said he doesn't know what's wrong, but that the pain I was having was related to my knee problems when I was in high school. He said I am not crazy and I have a systemic problem.
He said it could be Lyme, but he just doesn't know. It's not his speciality.
Then came the advice. He said not to give up until I find a doctor that thinks outside of the box. A doctor who is excited about approaching my condition as a challenge and finding an answer.
It still took me over a year to find the right doctor. I found many who said they just don't know. It hurt to hear those words, but it was better than a fake answer.
But I found that doctor and I found this community. And when I found a community of other Lymies and they heard my story, I knew for sure I wasn't crazy. I also knew I wasn't alone.
So hang in there. We all know it's hard. We all know what it's like to feel yourself slip away with this disease. But you are taking the right steps to get yourself back.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Unfortunately, my test will not be sent to Igenex. I'm sure it will go to LabCorp or Quest and will be negative of course. I really don't know. I'm just happy it's not MS. I was shocked that lyme was even considered. So, I'll just stick with treatment from my llmd.
Posts: 340 | From Ohio | Registered: Oct 2005
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