Topic: When docs find nothing does it make you feel better?
Jordana
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posted
It actually makes me feel better. I got another fab neuro exam; strength, brain function, motor function all normal.
I tried to show him how my body wouldn't stop moving, he was not particularly interested.
Oh, I'm also going to get worked up for a vestibular migraine and sleep study.
I also do not have orthostatic hypotension.
I used to be really frustrated with this kind of thing but now I'm glad. It means that whatever Lyme is doing to me it's so far only personally miserable and not medically dangerous. So far.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
It doesn't make me feel better anymore. It used to a little bit, but then I read too many stories of people being told there was nothing wrong with them in the ER when they actually had life-threatening problems. I should probably just stop reading stories.
Did you have a tilt table? Sometimes orthostatic hypotension doesn't show up till you're strapped to one of those.
Posts: 748 | From Texas | Registered: Feb 2015
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Jordana
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No but I don't think I have it. I've been checking for that for years.
I read of horror stories too, but if you look at the Lyme case reports on pubmed there are "subjective complaints" and then there's the stuff they can see happening. If they can't see anything happening to me that means these are not life threatening issues. At least not today they're not .
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Yeah, I guess the deal with me is that I'm pretty sure I have constrictive pericarditis. That's one of those things that slowly kills you and is only found during exploratory surgery a lot of the time. Imaging usually doesn't tell you much.
My most recent read was about a guy that died of a brain infection. The ER repeatedly told him there was nothing wrong. He went to the ER again just hours before his death. They told him he was nuts and they wouldn't treat him anymore.
So anyway, I don't trust doctors anymore. But you're right, it would be bad news if they told us we had aortic aneurysms or something like that. Or a tumor. So definitely, it's really nice to hear when they don't find anything like that.
Posts: 748 | From Texas | Registered: Feb 2015
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Jordana
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Ah well. Don't worry about that. Apparently we're all dying of brain infections.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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Darn gerbilologists could miss a melanoma on their moms face ! Your nerves are being affected whether they admit it or not ...muscles arent suppoda fire on their own ,chests are not supposda hurt ...do we just live with ...aint living
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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posted
I tried to explain the thing about how my body does not stop moving, to this neurologist. Here I am like rocking back and forth and then trying to show him that I keep rocking once I try to stop.
Okay, it's subtle but it's very obvious if another person is paying attention.
He said he had no idea what that was about. If a neurologist doesn't know what that's about I have no chance in hell of ever knowing.
But I'm going to get a sleep study and all kinds of vestibular workups. Gotta keep chipping away at the functional aspect. My body has to stop when I tell it to.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Nope. My previous family doctor liked to tell me when my bloodwork #s dropped back down into normal range that "it must have been a glitch".
Same for the stabbing pain on my right side that hurt badly for months. It quit hurting after the 3rd month - oh wow it must have healed itself though we have no idea what caused it.
Posts: 49 | From CO | Registered: May 2016
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Bartenderbonnie
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Come on people. . .
We go to the doctor because we are SICK !!! We go to the doctor to get answers so we can get better !!!
What is the number one thing we all have in common ? Answer: Lyme patients have Many doctors !!!
We are constantly fighting for our health even though we are constantly told that everything looks normal.
If a doctor does not adequately treat your body s complaints, then get rid of him . Weed out those bad doctors. They are toxic to your health. They can kill you just as well as Lyme can.
Non treatment to Lyme patients can cause serious bodily injury, emotional and physical pain, and even death.
I want to know what's wrong with me. I want to know my chances of a productive outcome. I want to know my treatment options. I want to know what I can do myself to improve my situation.
Stop being so nice as to not want to waste the doctors precious time. They are the ones that are wasting OUR precious time that we have so little of !!!!!!
Posts: 3217 | From Florida | Registered: Nov 2016
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Brussels
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Member # 13480
posted
I find it a shame too.
When lyme struck, I went to many drs.
Hormones in mess: sent to a specialist.
Heart in mess: specialist.
Infections on the rise: specialist.
Urine coming out, can't control, tingling sensations in the body, can't stand sunlight: specialist.
Joints in pain: specialist.
Only the non-specialist dr found something: extreme low ferritin.
He didn't know the reason, as always. Babesia? No, that's internet bull****, babesia does barely exist here.
All specialists found ZERO, nothing.
The best one, THE tick-born disease specialist of Switzerland, dr. Satz (please leave his name here, moderators, the guy is a public danger):
'Come back in a year for a check up'.
Did that make me happy? No, it made me sad first, then angry after.
It made me take a decision: I give up on mainstream doctors.
That was long ago, about 11-12 years ago.
Since then, no more drs in my life. Not even to check if my body is fine, if I need vitamins, minerals, whatever.
I wish I had seen a vet back then. At least, they look at the animals, SEE that they do not look good (not shining skin or hair), drooping eyes, extremely thin, lack of hunger etc.
They can see when the animals are in pain. If they lack minerals because their nails aren't good, their teeth weakened...
And they give them supplements, and try to treat them, until they see them functioning again!
Really, I guess we lyme sufferers would gain more visiting vets than drs, that barely LOOK at you. They look at the papers, results, numbers: it's all fine with you!!
Since I gave up mainstream doctors, I found other practitioners that were finally HELPFUL.
Nothing like mainstream bull****.
they talked about electrosmog, hormone imbalance, coinfections, parallel infections, clogged lymph, liver support, food allergies, amalgams, heavy metals, KPU, mineral deficiency, candida, worms, electro-therapies, light therapies, color therapies, psychological support, grounding, nutrition etc.
But in between, until I found them, it was lonely.
The thing I learned: we, as sufferers, have MUCH more power to decide what to do than anyone else.
We know MUCH more than we think, because these bodies belong to us, not to them.
We just don't dare, because there is a fear culture saying: 'never treat yourself without a doctor!'
Who do you think started that fear brainwash?? Our dear mainstream practitioners!!!
'Come to us, patients, don't treat yourselves, it's too dangerous, specially HERBS, they are extremely dangerous!!!'
It's such a big LIE: if doctors wanted us healthy, they would treat us, not let us suffer, and even die!
They do not want us to treat ourselves, so they try to take away our supplements, our herbs, any therapy that can do us well, that do not need medical intervention!
We CAN do much more for ourselves than 99.99% of mainstream drs out there, who are just money makers, not interested at all in health.
The last time I saw a mainstream dr was an infectious disease dr, in Belgium, back in 2006.
since they gave up on me, and I gave up on them, my health slowly improved. Since I promised never to see them again for lyme disease, at least, well, lyme went dormant for now 7.5 years.
I'm not telling you all to do that, of course. I just tell you, that my trust in mainstream drs is zero. Even negative, as they will prescribe you drugs that will make your health go even worse.
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
I agree with Brussels, we probably all are better off seeing a vet! The biggest issue with doctors today is that they are dehumanized. Somehow they are on a pedestal above us all
and patients who seek their help are nothing but a paycheck, a chart on a clipboard. I'm a 20 year old college student. They gave me not one look. They saw my chart before
walking through the door and had already made up their minds: stress. Because of course, I, the literary studies major couldn't handle my studies! Yes that had to be the root cause
of the migraine that wouldn't quit for a year, or the heart palpitations causing me to pass out in a stairwell, or the fact that I couldn't read, write, or speak because I had forgotten language I love so much!
They refused to see my pain. They refused to see my yellowing skin, the deep black under my eyes, my 30lb weight loss. They made me feel invisible, psychotic even. Just plain stupid.
Is my mental health- am I so unworthy of their time? God forbid, their sympathies?
Still to this day it's hard for me to say no, I am worth more. The damage they have done not only in prolonging and worsening my illness, but in how I think of myself, almost feels irreparable.
After my last appointment with a mainstream doctor, where I was far too unbefitting to be addressed by the doctor who told my grandmother I needed a psychiatrist and then walked out, I
decided never again. That was the last time I'd walk out of an office crying. I mustered up the little strength I had and found my current LLND.
Now that I am finally beginning to show progress, I live in constant fear that this is too good to be true. Something will come up in my blood work, surely I will get more bad news.
My last follow up was two days ago. Cefdinir was added to my off days from IV Rocephin and Flagyl every Wed., Thurs., and Fri.
I received nothing but good news, that it will be hard, but I'm getting there.
I can't say that I'm happy or even relieved.
I've fought so hard to hear the bad news, the good news is barely audible.
Posts: 113 | From Hollywood, Florida | Registered: Aug 2016
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Jordana
Frequent Contributor (1K+ posts)
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posted
I guess my point was, once we KNOW we have Lyme then these specialists can be helpful because they can help you figure out what is not happening to you.
They're never going to see Lyme but an MRI can find spots on your brain, infections in your bones and so on.
I'm not sure how I feel about the "never treat yourself without a doctor' idea.
I get more and more confused about antibiotics and I really think you do need some kind of medical person to help you figure it out, if you're going to take them.
Yeah, I imagine it's impossible to be sick when you're in your twenties.
When I was your age if I wasn't feeling right I got checked for STD's, anemia, pregnancy and then offered birth control and antidepressants.
I might as well have gone to some kind of epidemiological vending machine for these things, there was no point at all in wasting my time.
If I had a sinus infection I couldn't get abx anyway because I'd have to live with it for two months before they stopped telling me it was "caused by a virus."
It's a common experience. When a patient comes in with multiple complaints, doctors have been trained to assume that if there are all these things and no clinical evidence of a problem, that we are crazy.
This is somewhat logical, it's just that it's sometimes totally wrong.
Posts: 2057 | From Florida | Registered: Feb 2015
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