Jordana
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posted
When I went to see my PCP on Thursday she refused to give me a thoracic MRI.
Then she went into a speech. It went something like this:
" Something happened to you, we don't know what it is, and we may never know. But you have two choices. You can go up to Mayo and keep chasing a diagnosis, or you can just move on with your life.
Because if you allow yourself to continue to be sick ( not sure of the wording here) then you'll continue to get sicker because of deconditioning. People who are chronically ill get worse because of deconditioning and then more bad things start to happen."
Now this...first of all, I knew exactly the script she was taking this from. This is the school of chronic illness where medicine can't figure it out so they figure if people would *just get over it* and think about something else they'd recover. "
Deconditioning" in the chronically ill something she read about in some paper or maybe she heard a lecture in medical school.
I pondered that. First of all I am not deconditioned. I spend a fair amount of time asleep, more than at any point in my life, and I lie down a lot because sitting up makes me dizzy after an hour or two. Plus in the mino days the drug would hit me and start to mess me up.
But I walked a mile a couple weeks ago and I got on a plane to DC no problem, WITH the flu and a wrecked back. In fact just as an aside if this woman is worried about deconditioning she might reconsider the damn MRI I want.
Second, I don't agree with this idea about chronic illness and deconditioning. People who get CFS could do nothing worse than try to force themselves to run a marathon. IBS, heart disease, kidney issues, lung problems --
not to mention chronic viral or bacterial infections -- the last thing you want to tell these people to do is make themselves to do a bunch of jumping jacks.
But more than that she made me doubt myself. Am I just making this up? Or not...making it up, but making it worse ?
I really want to be part of the regular world, and the regular world is represented by a sanctioned medical doctor accepting your reality.
I really wished, and I would have at any other point in my life, thought -- oh! Okay, snap out of it. Just move on and think about something else.
But I can't.
Which left me just smoldering over what this woman said to me.
I've been trying not to let resentment get the best of me throughout this whole thing. No point getting mad, wasting the energy I could be using to try to get better.
But I am really pissed off. I am feeling resentful and powerless and victimized and I want to kick this woman's ass.
I keep going back to conventional medicine because while i know I have Lyme there might be something it's causing that can be addressed by it. But they've found "nothing" in two years.
Anyway, I wasn't able to sleep because I was so mad. I kept having imaginary arguments with this stupid lady who wants me to stop "imagining" something is wrong with me and "move on." Or go to the Mayo Clinic.
Sure I'll go to the Mayo Clinic. But I'm not very confident they'll find anything my local excellent hospital system couldn't find. And why can't they find it? I mean why is there no physical evidence at all of how crappy I feel?
Why is there no corroborating evidential reason that my head spins around and my spine moves on its own and I can sleep 14 to 20 hours a day?
It's 2016. I seriously can not accept: " something happened to you, and we may never know what it is."
Look, the amount of money and TIME and research and technology and just overwhelming effort this society has invested in healthcare and I get, " we don't know what happened to you, you just need to move on."
I'm sorry! That's not good enough!!!!
It's been two years, I'm still sick, it snowed, now I'm depressed and I *now* feel like I'm going insane. The really diabolical thing about this is that the only way to win this argument is to be very ill with something the medical establishment *can* find.
It's crazy to aim any of my intention towards that so here I am, another day of Lyme, feeling worse and realizing my only choice is to keep swallowing these pills and hoping it's better tomorrow.
(breaking up the post for easier reading for many here)
posted
I know exactly what you're feeling. I think the most frustrating thing is exactly what you said: "And why can't they find it? I mean why is there no physical evidence at all of how crappy I feel?"
I've been asking myself that question after every specialist or clinic I visited having gotten the same result. "You look perfectly healthy"
You may have to come to grips with the fact that you may never be the same again after having had this terrible disease, but I say never stop searching for answers. Keep fighting for a healthy life that we're all longing for.
Posts: 87 | From Massachusetts | Registered: Aug 2015
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Bartenderbonnie
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Amen sister !
Before Lyme : Gosh darn it. . . I took the garbage out yesterday and I woke up today and my backs killing me.
After Lyme : #€£# #&!&&###, My garbages pilling up, my backs killing me and I m scared to breathe because it feels like my ribs are stabbing my lungs. And someone keeps calling my name but I live alone.
Hey Jordana,
My ex PCP (had him over 20 years) referred me to a psychiartrist so I could "learn" to live with my symptoms. I told him I might be crazy, as many before have said this... BUT I also have Lyme.
Don't doubt your own body s language, ever !!!!!
Posts: 2977 | From Florida | Registered: Nov 2016
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Jordana
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Oh, the "compassionate lecture to the hypochondriac."
It comes in many forms but it's essentially their way of telling you they plan on being even less helpful than they were before the lecture.
Posts: 2057 | From Florida | Registered: Feb 2015
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Bartenderbonnie
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Yup.
I remained calm, listened to what he said, let him finish his lecture, with his condescending smile and arrogant manner.
Then I politely said that he took a Hippocratic oath to Not cause harm to his patients and by not treating my symptoms he is causing harm by delaying treatments.
One week later he politely sent me a certified letter dismissing me from his practice.
P.S. My new primary is 10 times smarter, willing to learn and work with all my other doctors on my journey towards wellness.
Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
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Also,
There is an Infectious Doc here who apparently had a change of heart. Or maybe divine intervention. Or maybe his humanity got to him after seeing so many sufferers walk into his practice and he was unable to treat because of his colleagues in the IDSA.
He s now an orthopedic wound specialist.
If you can't stand the heat, get out of the kitchen.
Posts: 2977 | From Florida | Registered: Nov 2016
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Jordana
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I actually think job of ID doc has to be one of the easiest jobs in medicine. What do you have to do? Take a swab, get a culture, check this and that, look it all up in a database and release the meds.
I think this is why they fight. They really don't have that much to do.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Wow, you walked a mile and could get on a plane? That's awesome. Not diminishing your illness in any way, I know you're sick, but that's great you can do that. Actually makes me feel a little hopeless....
Anyway, Mayo told me I was "deconditioned" and wanted to send me to their chronic fatigue program. They told me I'd only get out of it what I put into it. They told me to exercise. And like you said, pushing sick people too hard only hurts them.
Of course, I didn't go.
Posts: 748 | From Texas | Registered: Feb 2015
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WPinVA
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I don't think it's a bad thing that you're pissed off at this doctor. (It sounds like she deserves your ire.) You have a lot of fight left in you even after two years of hell. Good for you! That is what is going to get you better one way or another because you'll keep going, keep looking, keep asking until you get there.
Oh and it does sound like you need a new PCP. Never going to be productive. Sorry. But not uncommon. Left my old PCP long ago after he tried to talk me out of a Lyme dx when I had a freaking CDC-positive Lyme test.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Bartenderbonnie
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My very first primary doc (many years ago) was my aunts Doctor and a co-workers doctor.
Within a months time, all of us went to this said Doctor for various ailments. We all were prescribed the exact same med, an antipsychotic drug. We all quit him.
Don't you know I saw a flyer last month, in of all places, another doctors waiting room. He was advertising vaginal reguvination! He has an upper middle class practice that is thriving !!!!!
I can't make this #### up.
Posts: 2977 | From Florida | Registered: Nov 2016
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Jordana
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SickSam, in my opinion "deconditioned" is a stupid term. Obviously if you felt better you'd do more. I have firsthand experience of this. On days when I feel okay I do housework and laundry and cook and make phone calls and shower without thinking about it. On days when do not feel okay I do not do those things. I lie here and twitch and sleep in 20 hour blocks.
Obviously, if you felt okay, you'd do those things, every day, and voila, you'd no longer be deconditioned. Don't feel hopeless. Forcing it to work the other way is academic and delusional.
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Jordana
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You know I actually had a little conversation in my head with myself about this. Without realizing it this doctor was inviting me/pushing me into a position where I had to either prove I was sick by trying to be sicker, or give up entirely and pretend there was nothing wrong.
Hide it or "cope" or something, I don't know.
Gotta refuse to be a victim of *any* of it, keep on trying. I don't like any of the choices but that's the least depressing one.
I haven't been given any psych drugs yet Bonnie but I spent a year with an almost unlimited supply of Klonopin.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I agree 100% Jordana. I worked out and had 30lbs more muscle before I got sick. You can't will your body into doing something that it can't do.
Posts: 748 | From Texas | Registered: Feb 2015
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quote:Originally posted by Jordana: When I went to see my PCP on Thursday she refused to give me a thoracic MRI.
Then she went into a speech. It went something like this:
" Something happened to you, we don't know what it is, and we may never know. But you have two choices. You can go up to Mayo and keep chasing a diagnosis, or you can just move on with your life.
I think we've all face doctors that reach the end of what medical expertise they have, and resort to blaming the patient. We don't train our doctors to be healers, they are trained to spend 15 minutes with you, do testing, and match test results with a diagnosis.
We all know this doesn't work with chronic and debilitating illnesses. My advice is find a doctor interesting in healing. It's ok for a doctor not to KNOW exactly what is wrong with you. But a good doctor will treat what they know, and help you manage the rest.
This is why I have nothing but good things to say about integrative medicine (one caveat: don't do everything they recommend or your wallet will be empty from unproven techniques!).
Your mind however, is an important part to treat. The bad doctors look at us and say, if they treat the psychological problems, the physical will improve. Of course, they are right, but also wrong. Because in a Lyme patient, what comes first?
Some people get Lyme and recover. Why is that? Luck? Their genetics in regards to their immune system? Whatever it is, their constitution is stronger. But to say "I will always be sick" is a very bad attitude to have.
I think the problem with the "bad" doctors is, they aren't recognizing that when someone like me presents myself in their office, sick as a dog, it doesn't matter if my problems started out psychological, I'm beyond the point of talking myself out of it.
I tried to heal my mind, but 2 years of therapy and psych Meds had no impact on my neurological Lyme-brain. I was suffering from babesia, Epstein bar reactivation, etc. I needed to correct these imbalances before I could get better. Therapy wasn't going to solve it.
Now, two years later...I have treated my Lyme, babesia, suspected bartonella. I treated parasites and discovered a very serious mold problem in my house that was making me ill.
Currently I am rebuilding the strength of my digestive track which has taken a beating. Is my Lyme completely eradicated? I don't know.
But it doesn't matter. I can obsess for hours over bacteria hiding out in my joints, and some days I do. But there is NOTHING I can do about it. I accept it. And I work on rebuilding my immune system so that I do not invite the Lyme back in.
I think a huge problem is our attitude that Lyme must be eradicated, and it's stressful thinking about this. I had chicken pox. As a Lyme sufferor, I got shingles. Why? Because we all have these viruses that stay in our bodies forever. We have bacteria and viruses and protozoans and mycoplasma's in our bodies.
You are never free of them.
Instead of feeling hopeless, try and correct what you know is wrong. Work on strengthening your body. Leave no stone unturned, take Meds when you need them.
But don't feel hopeless. In 5-10 years they may have better tests and drugs. Take what you can now, and focus on being strong so that you don't relapse.
For me, IV antibiotics and parasite treatment helped. I'm also in therapy to figure out why I internalize my stress, making myself weak and then sick. Some of us have immune systems that aren't always serving us.
So I'd say these doctors are right, and they are also wrong. No amount of therapy would fix my babesia. But maybe it will help me from becoming so rundown that I get that sick in the first place.
Don't Give Up.
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Bartenderbonnie
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I am struggling to right this ship.i can't make sense of anything everyone of us has been subjected to by doctors.
Doctors swear to uphold the Hippocratic oath. This scared document requires Doctors to specific ethical standards.
The message delivered is still the same:
I will do no harm to my patients.
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge.
I will remember that there is an art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeons knife or chemists drug.
I will not be ashamed to say "I do not know" nor will I fail to call in my colleagues when the skills of another are needed for a patients recovery.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability.
It is my responsibility to include these related problems, if I am to care adequately for the sick.
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Jordana
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I wonder if they actually have to say these words at some point or if a xerox copy is handed out in the first year of med school.
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Bartenderbonnie
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There s more disgruntled doctors than ever. . .
There s a new, VALUE-BASED, reimbursement method to replace the existing structure that charged a fee for each service rendered.
This is part of an industry-wide battle, with insurance companies trying to move away from paying for each treatment session or drug used.
The new payment model rewards doctors, hospitals, or other providers for value and outcomes.
This was designed to improve quality and lower the cost of care by reimbursing physicians for the efficient use of services, reducing errors, attaining clinical excellence and improving care outcomes.
This new model provides enhanced eimbursements to the group of physicians meeting and exceeding national and local benchmarks of quality and efficiency.
P.S. I think this could be a very, very good thing. Or it could be a very, very, bad thing.
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Bartenderbonnie
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Does anybody else think that all medical professionals recieve a secret e-mail stating if they should ever encounter a Lyme patient, to get rid of them because they might become a liability to their practice ?
The minute I tell any of my providers that I am being treated for Lyme disease, my medical care suffers greatly.
Broken record. . . Go to the emergency room.
I don't want to go to the emergency room. That's the last place I would go.
Your my doctor. So stop trying to pass me off like a old chewed bone.
Posts: 2977 | From Florida | Registered: Nov 2016
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Jordana
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I was thinking about something similar today.
I had to get a new PCP because of new insurance. Told him all the things wrong now that I have Lyme. He said there was nothing he could do for me; with an apologetic smile, " because things are so specialized now."
Was going to get a tooth extraction; dentist got nervous and bailed, sent me to a specialist.
My first thought was, I am scaring the medical profession. The doctor had no idea what was wrong and the dentist didn't want to get sued over some massive potential complication.
But then I thought, in this very dark mood I've been in lately, that specialized medicine is like some kind of demonic torture system for the chronically ill that they're tricked into paying for. It's actually worse for us than if we lived in the 15th century and someone was saying incantations over us or something. This is worse because we're forced to trudge around begging for help, for years, with the most basic things, like sleep and pain medication.
Two years after I met my last doctor she wasn't even interested in testing my heart with an in-office EKG. She didn't even offer a cardiology referral. Couple days ago I was thinking, oh, I better ask this new doctor for a cardiology referral, because the last doctor didn't give me one.
One more thing on the list, one more task for me, the general practitioner, who is on two different heart medications. I can trudge or I can lay here but either way the work and time I have to put into interacting with western medicine stops making any sense.
Posts: 2057 | From Florida | Registered: Feb 2015
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Bartenderbonnie
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When you convey your concerns straight up with precision, they tell you to stay off google.
They are threatened by pubmed, web m.d., or anything on the Internet.
Why ?
The Internet offers a contribution to society.
Everything living organism on earth strives to survive.
Lyme patients need specialized treatments centers that accept insurances.
Like cancer centers, that treat every aspect of the body by a team of specialists.
Like drug and alcohol treatment centers, available even to the poor. Try to make you productive and healthy.
Ah, if only Tincup was in charge. We would see progress, to be sure.
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