Aa
almost entertaining
I know--I come on here and whine about my issues a lot, mainly because, even if it turns out that whatever the heck this is isn't exactly Lyme or whatever--you guys "get it." Oh, and I've sort-of become knowledgeable on the subject since all this started.
Anyway, I thought I'd share this story, new and true, to illustrate how this whole thing can be both hilarious and extremely sad all at the same time!!!
I went to an endocrinologist yesterday for an appointment for which I have waited four months! With all the "Lyme possibilities" and yet questions, I am still pursuing other possibilities in an effort to get better. I can say this about the appointment--I am pretty sure that, had I been the doctor and not the patient, I probably would have thought, "what an absolute nut job." And yet, as the patient, I was nearly in tears with embarrassment and frustration by the time I walked out of the room!
I had about 15 minutes, maybe 20 to tell the story of "why I am visiting with the Dr. today." So, I went back to the beginning--July 29 LAST YEAR. I pulled out my consolidated calendar "diary" with all the symptoms and dates and highlights so that I would remember to bring up the big things--but it came out in a jumble of complaints--and the calendar/notes made me look like an anal-retentive OCD hypochondriac!!! You should have seen the look on the Endocrinologist's face! Then she looked at my current prescriptions list and asked "what is Mepron?" so I explained that it was to treat Babesia--to which she asked if I HAD babesia. So I explained that I had tested negative for babs but had been treated based upon symptomology and had responded (initially) to treatment and so was continuing (for now). Well THAT went over about as well as a lead balloon :-). "You know there are tests that will tell you if you actually HAVE babesia--if you don't have it, why are you taking medication for it."
*Sigh*
So, I'm already on the compromised mental status list with this doctor, I can tell. And so I explain that I've been to a psychiatrist because my PCP couldn't figure out what was wrong and figured it was "all in my head." I told her that the shrink told me that he couldn't figure what to do with me because he couldn't find anything psychiatrically wrong with me and felt that this was medical--I even gave her his phone number--and I told her I couldn't win for losing with all this!! I'm sick, but I'm "fine" according to the tests--even the "maybe you're just nuts" tests!!!
So we ended with this--I'm overweight by 20 lbs and I need to exercise because my fatigue and such is due to my stagnation (which by the way, is due to my FATIGUE!!!!).
She did, however, order 11 vials worth of blood work to test for hormonal abnormalities--so at least I'll get those results before moving on.
I've decided--through this experience--that most doctors are judgmental hypocrites who all need to spend at least 5 months battling an "unknown" illness so they can get a grip on what it is like. I've also decided that there is no such thing as a doctor who ACTUALLY looks at the body with a systems approach to see how one thing may be affecting another and thus causing a cascade of DIS EASE in the body.
I kind of wanted to just look at the world yesterday and say, "Whatever?!!!?!?!!!!"
Anyway, I thought I'd share this story, new and true, to illustrate how this whole thing can be both hilarious and extremely sad all at the same time!!!
I went to an endocrinologist yesterday for an appointment for which I have waited four months! With all the "Lyme possibilities" and yet questions, I am still pursuing other possibilities in an effort to get better. I can say this about the appointment--I am pretty sure that, had I been the doctor and not the patient, I probably would have thought, "what an absolute nut job." And yet, as the patient, I was nearly in tears with embarrassment and frustration by the time I walked out of the room!
I had about 15 minutes, maybe 20 to tell the story of "why I am visiting with the Dr. today." So, I went back to the beginning--July 29 LAST YEAR. I pulled out my consolidated calendar "diary" with all the symptoms and dates and highlights so that I would remember to bring up the big things--but it came out in a jumble of complaints--and the calendar/notes made me look like an anal-retentive OCD hypochondriac!!! You should have seen the look on the Endocrinologist's face! Then she looked at my current prescriptions list and asked "what is Mepron?" so I explained that it was to treat Babesia--to which she asked if I HAD babesia. So I explained that I had tested negative for babs but had been treated based upon symptomology and had responded (initially) to treatment and so was continuing (for now). Well THAT went over about as well as a lead balloon :-). "You know there are tests that will tell you if you actually HAVE babesia--if you don't have it, why are you taking medication for it."
*Sigh*
So, I'm already on the compromised mental status list with this doctor, I can tell. And so I explain that I've been to a psychiatrist because my PCP couldn't figure out what was wrong and figured it was "all in my head." I told her that the shrink told me that he couldn't figure what to do with me because he couldn't find anything psychiatrically wrong with me and felt that this was medical--I even gave her his phone number--and I told her I couldn't win for losing with all this!! I'm sick, but I'm "fine" according to the tests--even the "maybe you're just nuts" tests!!!
So we ended with this--I'm overweight by 20 lbs and I need to exercise because my fatigue and such is due to my stagnation (which by the way, is due to my FATIGUE!!!!).
She did, however, order 11 vials worth of blood work to test for hormonal abnormalities--so at least I'll get those results before moving on.
I've decided--through this experience--that most doctors are judgmental hypocrites who all need to spend at least 5 months battling an "unknown" illness so they can get a grip on what it is like. I've also decided that there is no such thing as a doctor who ACTUALLY looks at the body with a systems approach to see how one thing may be affecting another and thus causing a cascade of DIS EASE in the body.
I kind of wanted to just look at the world yesterday and say, "Whatever?!!!?!?!!!!"
dolfnlvr:
OMG...I'm sorry but your post actually had my laughing out loud because I can so relate to you.
I get really nervous before going to doctor appointments because I feel like I need to start with a known tick bite that I got approx 36 years ago! And then I feel like I need to explain what every other doctor has told me and when I leave, I sometimes feel like a complete idiot and a hypochondriac too! And, I have to talk fast like an auctioneer or something to try and get everything in to the precious few moments that you get with the doctor!
Anyway, good to hear that we are not alone!
OMG...I'm sorry but your post actually had my laughing out loud because I can so relate to you.
I get really nervous before going to doctor appointments because I feel like I need to start with a known tick bite that I got approx 36 years ago! And then I feel like I need to explain what every other doctor has told me and when I leave, I sometimes feel like a complete idiot and a hypochondriac too! And, I have to talk fast like an auctioneer or something to try and get everything in to the precious few moments that you get with the doctor!
Anyway, good to hear that we are not alone!
I had to chuckle as I read your account of your rheumie appointment. Not that I am laughing at you, but that it reminded me of myself at some of my appointments.
It also reminded me of an article I read (but can't find right now) of a doctor who was writing to other doctors in describing how Lyme patients often present. He said they often ramble on, can seem a bit obsessive on some things, and seem highly motivated to explain everything in great detail. He went on to say they will often bring in lots of papers and records and will try to explain it all, but it is often not well organized. They'll forget things, lose their train of thought, and be apologetic about it all. I had to laugh. He described me very well! Sorry to say, but it sounds like he described you, too! (Another check mark in the Lyme column.)
He then went on to explain that these were not character or mental flaws in the patient, but neurological and neuropsychiatric symptoms of Lyme Disease itself. He was encouraging doctors not to dismiss this behavior, but rather to see it as a sign. I can understand how doctors who don't know that Lyme can cause these symptoms would simply see an anxious, neurotic, or obsessive patient with mysterious symptoms and no definitive test results for anything. Only a doctor you have seen since before you got sick would realize this behavior was different for you.
I am saddened to hear how many doctors choose to believe an anxiety/depression condition is the magical catch-all answer for patients with vague symptoms, rather than believing the patient who says otherwise. I just read an article in The Lyme Times by an archaeologist who got Lyme who recommends that if a patient hears a non-psychiatrist doctor say it is just anxiety or depression, s/he should immediately ask that doctor's qualifications to make a psychiatric diagnosis. In your case, you have already been to a psych who says you are NOT a psych case!
It also reminded me of an article I read (but can't find right now) of a doctor who was writing to other doctors in describing how Lyme patients often present. He said they often ramble on, can seem a bit obsessive on some things, and seem highly motivated to explain everything in great detail. He went on to say they will often bring in lots of papers and records and will try to explain it all, but it is often not well organized. They'll forget things, lose their train of thought, and be apologetic about it all. I had to laugh. He described me very well! Sorry to say, but it sounds like he described you, too! (Another check mark in the Lyme column.)
He then went on to explain that these were not character or mental flaws in the patient, but neurological and neuropsychiatric symptoms of Lyme Disease itself. He was encouraging doctors not to dismiss this behavior, but rather to see it as a sign. I can understand how doctors who don't know that Lyme can cause these symptoms would simply see an anxious, neurotic, or obsessive patient with mysterious symptoms and no definitive test results for anything. Only a doctor you have seen since before you got sick would realize this behavior was different for you.
I am saddened to hear how many doctors choose to believe an anxiety/depression condition is the magical catch-all answer for patients with vague symptoms, rather than believing the patient who says otherwise. I just read an article in The Lyme Times by an archaeologist who got Lyme who recommends that if a patient hears a non-psychiatrist doctor say it is just anxiety or depression, s/he should immediately ask that doctor's qualifications to make a psychiatric diagnosis. In your case, you have already been to a psych who says you are NOT a psych case!
Seriously: time for a new doc -- ?
Especially when a doc just writes off a patient as a head case when there are real physical things going on, not psychosomatic, then it's time for a new doc, imo.
Sorry, I've lost track of your situation, maybe you've gone over this before, but * don't * give * up.*
Lyme is treatable and curable, and even tho it's a tough thing to eradicate, its common coinfections are often an easier cure, and it's all worth doing.
Don't let the bugz win. They don't deserve it.
Especially when a doc just writes off a patient as a head case when there are real physical things going on, not psychosomatic, then it's time for a new doc, imo.
Sorry, I've lost track of your situation, maybe you've gone over this before, but * don't * give * up.*
Lyme is treatable and curable, and even tho it's a tough thing to eradicate, its common coinfections are often an easier cure, and it's all worth doing.
Don't let the bugz win. They don't deserve it.
I wish I had thought to do the one pager--that might have gotten me a point or two. :-)
I get it though--kind of. I understand that Doctors listen to sick people all day, and that their number one priority is to help the really sick ones and pat the complainers on the head. I know that whatever this "thing" is (Lyme, Babs, CFS, something else???) it is vague and obtuse and when you listen to the complaints they sound minor and silly. "Tired"--sounds so very "get over yourself." But as you all know, this fatigue is not sleepy tired, or get some exercise tired, it is bone wearying, take it all out of you tiring to the point of scary sometimes. And "dizzy" or "tippy" sounds vague too, especially if you've had MRI's and such that show you don't have a tumor or MS. So it must be psychosomatic, or stress, or whatever.
I get it--day in and day out of sick people might get old after awhile--and to not have answers when you think you have them all must mean that the other person is the "wrong" one.
But when it is ME--when I'm the one in the room, I don't get it--because I KNOW that I'm not the "wrong" one--even though, when I hear myself talking I understand why a doctor might think I am.
If nothing else--it is an education in treating others the way we want to be treated, no?
I get it though--kind of. I understand that Doctors listen to sick people all day, and that their number one priority is to help the really sick ones and pat the complainers on the head. I know that whatever this "thing" is (Lyme, Babs, CFS, something else???) it is vague and obtuse and when you listen to the complaints they sound minor and silly. "Tired"--sounds so very "get over yourself." But as you all know, this fatigue is not sleepy tired, or get some exercise tired, it is bone wearying, take it all out of you tiring to the point of scary sometimes. And "dizzy" or "tippy" sounds vague too, especially if you've had MRI's and such that show you don't have a tumor or MS. So it must be psychosomatic, or stress, or whatever.
I get it--day in and day out of sick people might get old after awhile--and to not have answers when you think you have them all must mean that the other person is the "wrong" one.
But when it is ME--when I'm the one in the room, I don't get it--because I KNOW that I'm not the "wrong" one--even though, when I hear myself talking I understand why a doctor might think I am.
If nothing else--it is an education in treating others the way we want to be treated, no?
"I pulled out my consolidated calendar "diary" with all the symptoms and dates and highlights so that I would remember to bring up the big things--but it came out in a jumble of complaints--and the calendar/notes made me look like an anal-retentive OCD hypochondriac!!!
we are told to make a list and notes when going to a new Doc that does not know you but what you do you are looked down upon.."
==============================
I hear you. Wonko and others use a symptom tracker online, I gather; I used a home-grown one on my laptop, since I'm always in front of it. In Word or Excel (I've used both), I create a document with four columns:
Date --- Medications --- Food --- Notes
I'd fill it in every day in the first three columns, and the 'Notes' column was whatever my impressions were, sometimes a lot, sometimes not much.
I learned fast not to show these to a doc, because they just roll their eyes and ask for the Reader's Digest Condensed Version, so before an appointment I would boil it down to the bare essentials: big events out of the ordinary; and any trends or general things like 'sleeping better' or 'joints often ache'.
I'd make short notes (1 page max) summarizing events and trends since the last visit, since my memory was shot and being at the doc's is always like a Broadway debut -- nerve-wracking. I'd give the doc a copy of the one-page summary and keep one for me to refer to.
At the bottom of the page were my questions for that appointment.
(And I'd take a copy of the whole chart in a 3 ring binder with me, tucked discretely in a tote bag, JUST IN CASE the doc had a specific question like 'did that symptom start before or after you began taking X medication?' Usually didn't happen, but you never know.)
This helped speed the appointment along, having the one-pager in hand; I didn't forget things; and my questions were there on the page so I could be sure they got answered.
Doctor management. Like dealing with little kids sometimes. Sigh.
we are told to make a list and notes when going to a new Doc that does not know you but what you do you are looked down upon.."
==============================
I hear you. Wonko and others use a symptom tracker online, I gather; I used a home-grown one on my laptop, since I'm always in front of it. In Word or Excel (I've used both), I create a document with four columns:
Date --- Medications --- Food --- Notes
I'd fill it in every day in the first three columns, and the 'Notes' column was whatever my impressions were, sometimes a lot, sometimes not much.
I learned fast not to show these to a doc, because they just roll their eyes and ask for the Reader's Digest Condensed Version, so before an appointment I would boil it down to the bare essentials: big events out of the ordinary; and any trends or general things like 'sleeping better' or 'joints often ache'.
I'd make short notes (1 page max) summarizing events and trends since the last visit, since my memory was shot and being at the doc's is always like a Broadway debut -- nerve-wracking. I'd give the doc a copy of the one-page summary and keep one for me to refer to.
At the bottom of the page were my questions for that appointment.
(And I'd take a copy of the whole chart in a 3 ring binder with me, tucked discretely in a tote bag, JUST IN CASE the doc had a specific question like 'did that symptom start before or after you began taking X medication?' Usually didn't happen, but you never know.)
This helped speed the appointment along, having the one-pager in hand; I didn't forget things; and my questions were there on the page so I could be sure they got answered.
Doctor management. Like dealing with little kids sometimes. Sigh.
D,
"
I've decided--through this experience--that most doctors are judgmental hypocrites who all need to spend at least 5 months battling an "unknown" illness so they can get a grip on what it is like. I've also decided that there is no such thing as a doctor who ACTUALLY looks at the body with a systems approach to see how one thing may be affecting another and thus causing a cascade of DIS EASE in the body.
"
right on.. had a nurse dismiss me about my memory. "oh it;s part of getting old, i have that problem" 2x!
wonko "I've had lots of doctors who quickly jump to conclusions about me before they ever ask or learn about my education, occupation, home life, etc. It is so frustrating and hurtful. "
yep...thy don't care
jackie"So eat healthy, avoid things you might be allergic to (dairy, for me), and see how it goes. Be kind to yourself."
D.
"I pulled out my consolidated calendar "diary" with all the symptoms and dates and highlights so that I would remember to bring up the big things--but it came out in a jumble of complaints--and the calendar/notes made me look like an anal-retentive OCD hypochondriac!!!
we are told to make a list and notes when going to a new Doc that does not know you but what you do you are looked down upon..
***** but when i get better i am going to advocate.
"
I've decided--through this experience--that most doctors are judgmental hypocrites who all need to spend at least 5 months battling an "unknown" illness so they can get a grip on what it is like. I've also decided that there is no such thing as a doctor who ACTUALLY looks at the body with a systems approach to see how one thing may be affecting another and thus causing a cascade of DIS EASE in the body.
"
right on.. had a nurse dismiss me about my memory. "oh it;s part of getting old, i have that problem" 2x!
wonko "I've had lots of doctors who quickly jump to conclusions about me before they ever ask or learn about my education, occupation, home life, etc. It is so frustrating and hurtful. "
yep...thy don't care
jackie"So eat healthy, avoid things you might be allergic to (dairy, for me), and see how it goes. Be kind to yourself."
D.
"I pulled out my consolidated calendar "diary" with all the symptoms and dates and highlights so that I would remember to bring up the big things--but it came out in a jumble of complaints--and the calendar/notes made me look like an anal-retentive OCD hypochondriac!!!
we are told to make a list and notes when going to a new Doc that does not know you but what you do you are looked down upon..
***** but when i get better i am going to advocate.
Dolfie, you are great! You have exactly the right swashbuckling attitude to get through and beyond Lyme.
I gained a bunch of weight when I was sick, but was too out-of-it to care. I just got bigger clothes and ignored it, while eating good food -- freshly prepared when possible, with as few additives as possible.
For me it was the right thing to do -- I think my body needed the daily influx of vegetables and fruit and no preservatives etc. to help clear out the mess. I've never been a food nazi, but believe it helped me.
It was however only AFTER my treatment was done that I went on a diet, sticking to a simple, few-chemicals diet and avoiding things that I realized I might be sensitive to (like gluten ... yes, I know it's the rage to be gluten-sensitive, but I really seem to be).
I had gotten up to 180+, and am now down in the low 120s again, and holding. Partof it, when I sick and so tired, was eating to give me energy, but I truly believe that
-- the bugz mess with metabolism, which causes weight gain, and
-- the body knows when it's under assault and packs on the weight as a protective factor till the war is over.
So don't beat yourself up about being lbs+ until your body is ready to let the emergency storehouse of calories go. You'll know when.
I never got a doc to confirm this for me exactly, but none of them disputed my theory.
So eat healthy, avoid things you might be allergic to (dairy, for me), and see how it goes. Be kind to yourself.
I gained a bunch of weight when I was sick, but was too out-of-it to care. I just got bigger clothes and ignored it, while eating good food -- freshly prepared when possible, with as few additives as possible.
For me it was the right thing to do -- I think my body needed the daily influx of vegetables and fruit and no preservatives etc. to help clear out the mess. I've never been a food nazi, but believe it helped me.
It was however only AFTER my treatment was done that I went on a diet, sticking to a simple, few-chemicals diet and avoiding things that I realized I might be sensitive to (like gluten ... yes, I know it's the rage to be gluten-sensitive, but I really seem to be).
I had gotten up to 180+, and am now down in the low 120s again, and holding. Partof it, when I sick and so tired, was eating to give me energy, but I truly believe that
-- the bugz mess with metabolism, which causes weight gain, and
-- the body knows when it's under assault and packs on the weight as a protective factor till the war is over.
So don't beat yourself up about being lbs+ until your body is ready to let the emergency storehouse of calories go. You'll know when.
I never got a doc to confirm this for me exactly, but none of them disputed my theory.
So eat healthy, avoid things you might be allergic to (dairy, for me), and see how it goes. Be kind to yourself.
I am also sorry for your experiences. I was actually kicked out of a medical practice because the doctor couldn't figure out why all my blood tests were wacko and instead of admitting she was not "God" she kicked me out saying I was a trouble maker for wanting answers. I wanted to say Whatever.
In the earlier days when I was sick but not sick enough, the only reason I was not told to go to a shrink, was the fact that my Dr was my next door neighbor, lol and I always had a low grade fever. Poor Scott, my neighbor doctor, tried everything an had me diagnosed with several things, not correct of course but he tried.
My heart goes out to you but as Wonko said you still will have some test results. From there hopefully you can find an LLMD. Sorry my Lyme brain doesn't remember if you have been there yet.
In the earlier days when I was sick but not sick enough, the only reason I was not told to go to a shrink, was the fact that my Dr was my next door neighbor, lol and I always had a low grade fever. Poor Scott, my neighbor doctor, tried everything an had me diagnosed with several things, not correct of course but he tried.
My heart goes out to you but as Wonko said you still will have some test results. From there hopefully you can find an LLMD. Sorry my Lyme brain doesn't remember if you have been there yet.
I'm so sorry for your negative experience. I can so relate to feeling dismissed by mainstream doctors.
It's great you can look back and laugh. And I'm glad you can see through the logic of the appraisal that all of your problems could be resolved with some light exercise. It's great you are getting all of the bloodwork done. Make sure you get copies of all of the results to take with you to Lyme (or other) doctors.
For me, being brushed off as a malingerer by docs has been hurtful on a personal level, and I'm guilty of letting it cause me not to go to the doctor when I should. I recently required surgery for a problem that I felt and knew about for some time, but I had so much trepidation about going to a doctor to talk about it because I expected to be told that it was in my head, or that I was just complaining about the ordinary aches and pains of daily living.
I've had lots of doctors who quickly jump to conclusions about me before they ever ask or learn about my education, occupation, home life, etc. It is so frustrating and hurtful. I've read before that one reason why people become hypochondriac is because they want an excuse not to compete in the real world. Anyone who takes 1/2 a minute to learn about me would instantly see how far away from the truth in my case.
Sigh. Sorry, not trying to hijack your post with my own complaints!
Next time you look at the sky shouting "whatever," be assured that you are not alone!
It's great you can look back and laugh. And I'm glad you can see through the logic of the appraisal that all of your problems could be resolved with some light exercise. It's great you are getting all of the bloodwork done. Make sure you get copies of all of the results to take with you to Lyme (or other) doctors.
For me, being brushed off as a malingerer by docs has been hurtful on a personal level, and I'm guilty of letting it cause me not to go to the doctor when I should. I recently required surgery for a problem that I felt and knew about for some time, but I had so much trepidation about going to a doctor to talk about it because I expected to be told that it was in my head, or that I was just complaining about the ordinary aches and pains of daily living.
I've had lots of doctors who quickly jump to conclusions about me before they ever ask or learn about my education, occupation, home life, etc. It is so frustrating and hurtful. I've read before that one reason why people become hypochondriac is because they want an excuse not to compete in the real world. Anyone who takes 1/2 a minute to learn about me would instantly see how far away from the truth in my case.
Sigh. Sorry, not trying to hijack your post with my own complaints!
Next time you look at the sky shouting "whatever," be assured that you are not alone!
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