posted
I thought I had an ace in the hole, my sister is a nurse practitioner, and I thought a good one. My god a she basically said its all in my head and most of her patients suffer these symptoms. I layed out my risk factors blah blah blah. talked till i was blue in the face. I told her to to read up on it, she read in her duck stuff all the latest info. she came up with its an east coast thing, then asked about rash. then recommended an elisa test. when i corrected her on all this . she recommended 2 weeks of doxy that is what her program said. so much for my ace in the whole. I didnt want to bother her on her month long vacation at her second home in Hawaii. Oh yeah i shouldnt become my own dr. well i dont have any choice for now. there was alot more that I wont go into. I just cant believe it.
-------------------- Help I am being forced against my will to learn medicine!!! Posts: 164 | From WASHINGTON | Registered: Jun 2011
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posted
Oh yeah and fifteen min appts are normal after the first visit. I know she saw how much she wasnt making off of me. She was new and I know she found out how much my insurance sucks.
-------------------- Help I am being forced against my will to learn medicine!!! Posts: 164 | From WASHINGTON | Registered: Jun 2011
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posted
How come people I never met care more about my health than my sister. She started talking down to me and its prove my Iq is quite a bit higher than hers, I am just a redneck I cant figure anything out because I didnt go to college.
-------------------- Help I am being forced against my will to learn medicine!!! Posts: 164 | From WASHINGTON | Registered: Jun 2011
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I'm sorry your sister wouldn't help you, that's got to be very hard to deal with.
One thing I have learned about people in many professions is that they are unwilling to continue learning beyond their college graduation, which is unfortunate because so many fields (particularly science and medicine) are constantly changing.
We don't know everything about Bb. We don't know everything about the disease(s) caused by Bb. To rely on ONE very strict, very narrowsighted set of guidelines is what has gotten many of the chronic sufferers where they are today.
Unfortunately, there is a lot of politics in medicine where it doesn't belong... but that's what happens when you put a price tag on a person's health.
I completely sympathize with your aggravation. I got my latest ELISA test results back. Negative. So here I am, being treated for Lyme Disease while simultaneously being told I don't have it. Only in America...
Posts: 156 | From Virginia | Registered: May 2011
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I'm in the same situation---family member is an infectious disease md, used to work at the CDC!
I'm sure you can imagine what I've had to deal with! We haven't spoken in years now.
Try not to let your sister's ignorance sway you from your treatment plan........once you are well, you can hope to try to educate.....
right now, though, concentrate on surrounding yourself with those that can help you and focus on regaining your health!
Hugs!
Posts: 648 | From northeast | Registered: Feb 2009
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
"I just cant believe it"
neither can anyone else ?
strange isn't people that hold a respectable life, right up till we say Lyme Disease. then blank, we're off the charts.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I'm sorry that this is the reaction that you got from your sister. But I don't know that she doesn't care about your health. She is just ignorant of lyme disease....like MOST other health care professionals.
I work in healthcare and am a nurse as well, and until I got lyme...I just didn't "get it". I;ve heard people on this board say...until you get lyme, you don't get it and that really is true.
I spent the last three years thinking I had a psychological problem and that all of my symptoms were psychosomatic. Then, when my anxiety got really bad and I started having panic attacks, I started seeing a psychologist.
When my anxiety started to lessen but I was still having psychical symptoms, I couldn't really figure out what was wrong. I went to a psychiatrist and tried meds. All that did was aggravate my symptoms.
I had been to a cardiologist for the palpitations, dizziness, and chest pain. All tests normal. I had been to a GI doctor for my GI symptoms...all tests normal. I had been to my PCP doctor numerous times...all blood work normal.
I even passed out at work one day...had a heart rate of 160...my BP was 70/30....and I was white as ghost just prior. I ended up getting an EKG, labs were drawn and sent and I had a CT-scan of my head. All normal again!
Just earlier this year, I started having problem with speaking and swallowing my food. I had expressive aphagia and had days where I couldn't eat solid food because it would just get stuck in my throat. What did I do? I chalked it up to anxiety, even though my anxiety was improving at this point.
Then the fatigue hit me. It was like nothing I had ever experienced before. I would have times where I would just lie in bed for a few days at a time because I just couldn't move. What did I think? Well, at this point, I convinced myself that I must be depressed.
Now...throughout these years and all my symptoms, my MIL kept telling me...you need to get tested for lyme. I think you have lyme disease she would say to me. She has lyme, and at the time was seeing an LLMD in the area....still does actually.
Anyway, I would just blow her off. You think everyone has lyme, I would say! I had never had a rash, and didn't have any joint pain and no matter how much info she gave me, or how many times she tried to explain lyme to me...I just didn't listen! Big mistake on my part!
I live in Chester County PA....a known endemic area. I go to the mountains every year and we go hiking. I had been camping many times. I had lived for 6 years in a house backed up to the woods on 13 acres of land. I would walk through these woods. I would garden out back where the deer freely roamed. The dogs in the house that I lived at had lyme before. I'm sure there are other risk factors that should have led me to listen to my MIL, but I didn't.
I guess my point in telling you all of this is that I had many reasons to actually listen to my MIL about the possibility of lyme but I didn't. I was so stuck on the fact that I had never seen a rash and that I didn't have joint pain that I just I just dismissed her as thinking everyone had lyme.
We see a fair amount of people come into the ER with a bulls eye rash and "flu-like" symptoms their presenting complaint. I was under the impression that most people did in fact get the bulls eye rash. I mean...that was what I was taught. Why should I have thought any different and why should I have listened to my MIL who was a teacher? As mentioned, I was convinced that she just thought everyone had lyme.
Anyway, here I am...some three years later treating for lyme. My PCP had decided to run a WB blot on me and while the overall WB was negative, I did come back reactive for lyme specific bands. He told me I didn't have lyme and that it was all in my head. I needed to just continue to see the psychologist.
At this point, all those instances of my MIL telling me I had lyme FINALLY "clicked"! Maybe she did know what she was talking about? I then did some searching on the web...found this board...and the rest is history. I've been treating for lyme and seeing an LLMD since April 7th. My symptoms have improved a bit already.
I now make it a point to try and educate others about lyme. I've even got into an argument with one of the docs I work with. Actually, most of them didn't even believe my lyme diagnosis but have slowly been turning the corner in that aspect since my symptoms have improved and I look better.
One of the other docs even asked me who I was seeing. He had been treated for lyme the previous year but was still having symptoms. He did some research on his own and after talking with me now believes in chronic lyme. He had himself convinced that he too was suffering from either anxiety about his illness or that he was left with residual effects of the disease. He had NO knowledge....NONE...of co infections.
I know I'm rambling on at this point, but I just wanted you to see that even me and my coworker...BOTH of whom have lyme/chronic lyme...didn't think that it existed. We were fools. the good news is that we finally realized what the heck was going on.
It took me the better part of three years! But it did happen and I'm now thankful of my MIL being such a PIA....as I called her at the time! I know she wanted to say, told ya so! She has been wonderful in helping me out through this time in my life.
The best advice I can give you in dealing with your sister is to be patient. Give her information on lyme and the associated co-infections. Try to find research online. Be persistent in your efforts. You never know when the information that you're giving her may finally click!
Good luck in getting the help you need and try not to get discouraged by the ignorance amongst those in the healthcare industry. I, too, was one of the ignorant but I eventually came around.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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lymeboy
Unregistered
posted
I got this reaction from a bunch of docs... even AFTER I tested positive on a standard Labcorp elisa.
It might be a financially good thing to seek care from your sis. But there's an obvious conflict of emotions with someone so close to you. This is how your sis feels about Lyme. I am sure she thinks she is doing you a favor by speaking frankly. But she isn't.
I would really get to a LLMD. There are a few in Washington state. Your sister isn't going to help you. Maybe stay out of contact for a while and seek proper treatment.
Perhaps one day you could get her to watch Under Our Skin with you or something. Im sorry to hear about this. Many of us here have dealt with very similar situations. It is very frustrating, and it will not help you get better.
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Philly, your story is so interesting and enlightening. It just goes to show what a huge hill we chronic sufferers have to climb to gain credibility.
My niece is a PA and told everyone in my family I was mentally I'll with depression and anxiety. This hurt so much, because we were so close. For 5 years our relationship was strained.
Two years ago she and I hung out together for a couple of days while we both attended to her mom while she was hospitalized. I think my niece finally realized that I am the same person she always knew. I didn't act "crazy" or "weird". I DID limp and tire easily, and I made no apologies. I just straight out told her my illness was bothering me.
Something changed at that time. We have gotten closer. I feel like I LIKE her again, and vice versa. I'm just guessing, but I think she's been trying to see the disease from the chronic perspective.
People's minds CAN be changed, even those who are most stubborn!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
are you sure we're not related? my sister is the radiologist. she's just exactly like that.
and i AM the redneck from texas. only i was a stupid english major who doesn't know a damn thing and she's this godlike person who doesn't hesitate to diagnosis everybody in the family...
when i called her about cancelling my trip she proceeded to start yelling me about eating and seeing all these doctors when all i had to do with LOOSE WEIGHT AND EXERCISE!!! oh yeah, right, when some days i'm lucky to get out of bed, others not so bad.
i gave up. if i loose the money for the ticket, tough, it was worth it.
medical people are bad enough, but having a relative in the field is worse.
i'm sorry to say, philly, that i truly believe with all my heart that nobody in the medical profession will believe us until they GET lyme. period...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
You may very well be right randi. I will say that this experience has most definitely changed me in many ways.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Life is hard, this disease is harder, and having no doctors who believe you or family who strongly support you, make it unbearable.
I still think Im in a nightmare and this is not real. Lyme can't exist because none of it makes any sense at all! I bet this is how doctors see it. They can't make any sense out of it since it manifests in so many ways, they can't get a simple positive test, and can't fix it with a quick dose of antibiotics. Therefore it just doesn't exist because they are too ignorant to figure it out.
I was in nursing school before all this happened to me and this will NOT be my career choice anymore after dealing with the medical system.
As for family...well my brother made fun of me for being sick! Like it was a joke, and my mom never calls me. Thank god for my husband or I don't think I would still be here. Stick with those who support you and ignore the rest.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
Sorry I had to take a break, basically by the end of her diagnosis,which I wont go into, I might as well shoot myself, with her theory I would have no hope. I am already feeling better with my own treatment. I am sorry so many of you have dealt with this also. Thank you for your support, I have a very long fuse when it comes to my temper, but it burnt fast with her. I basically said your right im wrong to keep family peace. I can not however believe how ignorant she was, and how she relied on her computer program that said two weeks of doxy and I will be good as rain. I am going to email her dr b's? report, as well as other information.
In the meantime I will continue on my path. I am telling everyone about lyme and proper tic removal, and I plan to teach it in hunters safety. People in Washington are extremely ill informed about tics and lyme.
-------------------- Help I am being forced against my will to learn medicine!!! Posts: 164 | From WASHINGTON | Registered: Jun 2011
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lymeboy
Unregistered
posted
Do your best to educate her, but maybe just keeping quiet and keeping the peace is what will work best for now. It must be real rough to have to accept her POV, but you will definitely be better off with a LLMD.
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-------------------- Help I am being forced against my will to learn medicine!!! Posts: 164 | From WASHINGTON | Registered: Jun 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
quote:Originally posted by Jamers: Life is hard, this disease is harder, and having no doctors who believe you or family who strongly support you, make it unbearable.
I still think Im in a nightmare and this is not real. Lyme can't exist because none of it makes any sense at all! I bet this is how doctors see it. They can't make any sense out of it since it manifests in so many ways, they can't get a simple positive test, and can't fix it with a quick dose of antibiotics. Therefore it just doesn't exist because they are too ignorant to figure it out.
I was in nursing school before all this happened to me and this will NOT be my career choice anymore after dealing with the medical system.
As for family...well my brother made fun of me for being sick! Like it was a joke, and my mom never calls me. Thank god for my husband or I don't think I would still be here. Stick with those who support you and ignore the rest.
All the more reason you should go into nursing. You are in the know and will be able to help others.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Unfortunately my sister was diagnosed after me. She gets it completely and is the sickest now of the 5 in my family dealing with Lyme. I try to be her biggest supporter knowing no one else will get it.
There are no surprises on this forum. If we all would write a book together, no one would believe it!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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quote:Originally posted by onlyflippin: Sorry I had to take a break, basically by the end of her diagnosis,which I wont go into, I might as well shoot myself, with her theory I would have no hope. I am already feeling better with my own treatment. I am sorry so many of you have dealt with this also. Thank you for your support, I have a very long fuse when it comes to my temper, but it burnt fast with her. I basically said your right im wrong to keep family peace. I can not however believe how ignorant she was, and how she relied on her computer program that said two weeks of doxy and I will be good as rain. I am going to email her dr b's? report, as well as other information.
In the meantime I will continue on my path. I am telling everyone about lyme and proper tic removal, and I plan to teach it in hunters safety. People in Washington are extremely ill informed about tics and lyme.
I am disappointed by how many doctors I have seen rely SOLELY on the computer to come up with a diagnosis. Add to that the fact that most times you get approx. 15 seconds to explain what's bothering you and of course you end up with a lot of "I don't know" or just plain wrong answers!
I'm studying plant and soil science and I am also going to spread the word to my fellow students about the very real dangers of Lyme disease. We are having an absolute EXPLOSION of reported cases here where I am, so you'd only have to imagine how high the actual number of cases is.
I am starting to feel like, maybe this happened to me for a reason. I'm a pretty opinionated person and I don't hesitate to share my opinion with you (even if you don't want it, most of the time). Anywhoooo.
Keep spreading the word!
Posts: 156 | From Virginia | Registered: May 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I feel the same way anonymiss! Like this happened to me for a reason. Actually, the experience has led me to rethink my career and I am currently looking into schools to get my NP and after that my DNP. My goal is to treat lyme patients. Of course, I won't be going back just yet, but I'm researching my options.
The problem with many doctors is that they don't look at the person as a whole. They treat symptoms and most of the time ignore what is causing those symptoms.
A little off topic but...about two years ago, my hubby was diagnosed with high cholesterol. He came home from the doctors office with a script for simvastatin. Well, I was LIVID! Here he was, an otherwise healthy 30 year old with ONE lab result that came back high for cholesterol and the doctor threw him on meds. And it wasn't even that high!! 240 but his total, but his HDL's were very good at 90.
Well, I had it out with that doc and made my hubby switch. You would think that the first course of action would be diet and exercise. But NO...not with this guy!
I find myself arguing with the docs I work with more and more as well. I've even been written up before about it and after being told we weren't going to do draw certain labs or do certain tests...I have went ahead and ordered them myself. This is what got me in trouble. I was told I was "just a nurse" and if I wanted to be a doctor then I had to go to medical school. My response was that is was my job to keep the doctors on their toes as a nurse! Ha!
But anyway, I get that those who suffer with this disease are ridiculed and dismissed and I do find that to be a damn shame. It happens with other diseases as well and it shouldn't. I wish that there was more that I could do but I even had a hard time accepting my own fate. I feel like so many things I learned in school are just plain wrong. But I am glad that the light bulb finally turned on.
It is really important imo, to try and educate the doctors and nurses. Sometimes, we just don't know. I didn't and like I mentioned even had myself convinced that my symptoms were psychosomatic. I'm not making excuses either and I know that there are docs and nurses out there who are just condescending you know whats!
I've really been thinking a lot lately about the sad state of our medical system as a whole. It does make me very upset and I was crying most of the day the other day. Something does need to be done. what? I don't know.
I am fortunate that I have supportive family and friends and part of the reason for that is that we know so many people who have been affected by lyme disease....my MIL included and she was a VERY bad case.
I have since become VERY vocal about my opinions on lyme. I think I may be getting through to some of the people I work with as well. We had a young woman come in yesterday with a swollen and painful knee...no known recent injury....and the doc agreed to send a lyme titer. It did come back positive and I just went in and gave the girl a bunch of info that I wrote down for her. I recommended this site as well if she had problems getting help. Not much else I can do.
Only...continue doing what you're doing. Educate others and research what you can to help aid you in your journey. Maybe your sister will come around one day...maybe not. Time will tell. Try not to get discouraged...I know, easier said than done! I'm sorry that you're going through this.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I feel the same way anonymiss! Like this happened to me for a reason. Actually, the experience has led me to rethink my career and I am currently looking into schools to get my NP and after that my DNP. My goal is to treat lyme patients. Of course, I won't be going back just yet, but I'm researching my options.
The problem with many doctors is that they don't look at the person as a whole. They treat symptoms and most of the time ignore what is causing those symptoms.
A little off topic but...about two years ago, my hubby was diagnosed with high cholesterol. He came home from the doctors office with a script for simvastatin. Well, I was LIVID! Here he was, an otherwise healthy 30 year old with ONE lab result that came back high for cholesterol and the doctor threw him on meds. And it wasn't even that high!! 240 but his total, but his HDL's were very good at 90.
Well, I had it out with that doc and made my hubby switch. You would think that the first course of action would be diet and exercise. But NO...not with this guy!
I find myself arguing with the docs I work with more and more as well. I've even been written up before about it and after being told we weren't going to do draw certain labs or do certain tests...I have went ahead and ordered them myself. This is what got me in trouble. I was told I was "just a nurse" and if I wanted to be a doctor then I had to go to medical school. My response was that is was my job to keep the doctors on their toes as a nurse! Ha!
But anyway, I get that those who suffer with this disease are ridiculed and dismissed and I do find that to be a damn shame. It happens with other diseases as well and it shouldn't. I wish that there was more that I could do but I even had a hard time accepting my own fate. I feel like so many things I learned in school are just plain wrong. But I am glad that the light bulb finally turned on.
It is really important imo, to try and educate the doctors and nurses. Sometimes, we just don't know. I didn't and like I mentioned even had myself convinced that my symptoms were psychosomatic. I'm not making excuses either and I know that there are docs and nurses out there who are just condescending you know whats!
I've really been thinking a lot lately about the sad state of our medical system as a whole. It does make me very upset and I was crying most of the day the other day. Something does need to be done. what? I don't know.
I am fortunate that I have supportive family and friends and part of the reason for that is that we know so many people who have been affected by lyme disease....my MIL included and she was a VERY bad case.
I have since become VERY vocal about my opinions on lyme. I think I may be getting through to some of the people I work with as well. We had a young woman come in yesterday with a swollen and painful knee...no known recent injury....and the doc agreed to send a lyme titer. It did come back positive and I just went in and gave the girl a bunch of info that I wrote down for her. I recommended this site as well if she had problems getting help. Not much else I can do.
Only...continue doing what you're doing. Educate others and research what you can to help aid you in your journey. Maybe your sister will come around one day...maybe not. Time will tell. Try not to get discouraged...I know, easier said than done! I'm sorry that you're going through this.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Nurses are the real heroes! I have rarely met a nurse that wasn't caring, friendly, attentive and genuinely concerned for the well being of the patient. I believe it was due to the ER nurse on duty (who seemed very knowledgeable about Lyme disease) that I was given the Flagyl/doxy combo that has worked so well for me!
I was almost entirely unable to walk due to excruciating pain and stiffness in my ankles and the feeling that my legs weighed at least 1,000 tons each. Now, a week later I am nearly pain-free, fatigue-free and symptom-free. Nearly. I have found that my cognitive abilities are not returning to their previous levels but I still have two weeks worth of abx so I'm keeping my fingers crossed (when I can remember to, anyway, LOL)
I found myself questioning whether I was imagining this whole thing. Several times over the past month and a half, in fact. Despite being in severe pain, debilitating fatigue and the myriad of other symptoms I was experiencing, I would ask myself AT LEAST once per day "Am I imagining this? Is it all in my head?"
I like to think my head is pretty smart, and having been through a natural childbirth (back labor with contractions ONE minute apart for 6 hours) I have a pretty high threshold for pain so even though the thoughts were always there I have come to accept that this is definitely REAL.
It sucks that it's happening to us, but again, I think everything happens for a reason =)
Posts: 156 | From Virginia | Registered: May 2011
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posted
Thank you I agree about the medical system, I cannot even imagine how many people are suffering with this and other diseases, yet get pushed through the pcp like cattle.
-------------------- Help I am being forced against my will to learn medicine!!! Posts: 164 | From WASHINGTON | Registered: Jun 2011
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