how do you get a doctor to take you seriously?

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jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 5/19/2010 9:47 PM (GMT -6)   
Every doctor I've gone to about my symptoms half listens and looks at me like I'm crazy. Then, they run half the tests I think they should. Then it's all is fine, here's your script for prednisone that should cover it, and goodbye. Ugh!
 
In the last week I've had: a CBC-normal, U/A-UTI (treating me for that), Hep C (not back yet), CMP (low sodium), T4 and TSH (not back yet), Lupus specific antigen? (not back yet), ANA (not back yet). Why do they keep running the same tests over and over? I brought in a list of symptoms with me to my reg doc and the rheumy and they just glance at it and hand it back! I am not a hypochondriac; it isn't stress. I AM sick!!!
 
I'm so frustrated!
 
For the past 9 years I have been praying and thinking "Surely, someone out there knows what's wrong with me. I mean I have tons of symptoms. It seems like they would all have something in common, right?" Well, I've been going to doctors everytime a new symptom arises and it's always the same.
 
I could throw a fit, but then they'd really think I was crazy! It's not that I care so much what they think of me, but unless they really believe I'm sick are they going to really search for answers?
 
Please help, guys...
Jessica, diagnosis: unsure


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/19/2010 10:09 PM (GMT -6)   
You know your own body better than any MD will ever hope to come close to knowing it. Most MD's tune a patient out after 15 seconds. So if you don't catch their attention within that 15-second window, they're off thinking about horses (i.e., "all in your head" or "let's do the run-of-the-mill, most common tests and call it good) instead of zebras, and thinking their own diagnostic flow chart instead of thinking about your specific case.

A Naturopathic Physician will usually take your symptoms more seriously and will usually spend more time listening to you. At least, this has been my experience.

Remember, many of the MD's out there were in the BOTTOM 50% of their class in medical school. And going to med school doesn't make them smart - even a rectal thermometer has lots of degrees...

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/20/2010 7:08 AM (GMT -6)   
jesimae,

I notice from your profile you're on the lupus forum. Do you have lupus? Have you gone to a Lyme Literate Medical Doctor (LLMD) for a Western Blot test from Igenex?

What brings you to the Lyme forum? Do you suspect you might have lyme disease, and if so, what makes you think that you may possibly have it? Ever been bitten by a tick by any chance?

Sorry you can't get to the bottom of this and have to suffer with your symptoms. Sad that doctors don't take us more seriously, isn't it?

Razzle, you comment, " even a rectal thermometer has lots of degrees...", gave me quite a chuckle. That's funny only because it's the truth. turn

Gary

Post Edited (GWB) : 5/20/2010 8:09:13 AM (GMT-6)


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 5/20/2010 8:00 AM (GMT -6)   
my observation: Dr's will tune out people who come in and complain and whine. Seriously, this is not a insult.
Dr's listen to hypochondriacs all day. People who abuse the medical system. They will assume you're like the people who are just chronic complainers.

Of course, some dr's are just egotistical jerks, but others truly just turn you out.

How I got my dr's to listen and all of my dr's listened was to talk in a tone that was not threatening to them, show them info, don't walk in to their office frantic and hysterical and don't throw pages from google at them.
Ask their opinions on lyme, see how they react to you before telling them you believe you have it.
Then keep in mind, they work for you so you advise them which tests you would like and how you would like things to pan out.

And we are visual creatures so don't walk into a dr's office in tears, dressed like you're about to get to bed. Clean yourself up and look presentable.
If you look crazy, they will assume you are.

This sounds unreal, but it's reality. I work with many dr's and my friend is a doc and this is reality.

If you ever saw the Dog Whisperer, you will see that everything is about energy. Walk in there like you're the pack leader.

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 5/20/2010 8:01 AM (GMT -6)   
jesimae,

Can you share with us the most significant symptoms that you are experiencing?
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35849
   Posted 5/20/2010 9:15 AM (GMT -6)   
Razzle said...
even a rectal thermometer has lots of degrees...


Never quite thought of it like that... smilewinkgrin LOL
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 5/20/2010 12:43 PM (GMT -6)   
Truthfully guys, I don't have a clue what's going on with me. Here is a copy of an email that I sent that wraps up most of my symptoms...
 
1) I, like you, spent my childhood outdoors. I was always roaming through woods and pastures climbing trees, digging, etc. I'm not sure how many ticks I have found on my body through the years, but if I had to guess I'd say around 20.
 
2) When I was 15 my mother basically forced a doctor to check me for Mono...repeatedly. On the 3rd test it was positive. I had Mono for a year and a half! I had spleen enlargement and was also diagnosed with CMV. An immunologist? gave me injections to build my immunity (3/day), and it worked.
 
I was diagnosed with a heart murmor as a child and had probs with it, but nothing significant.
 
3) Got a diagnosis of chronic Mono when I went away to college and slept for 2 days straight-no one could wake me sufficiently.
 
4) Started reacting to every antibiotic I took for anything, with a weird rash. Either only on my face or only on my back or only on my abdomen. Besides that, just mainly dealt with fatigue until my daughter was born.
 
5) During childbirth, my BP bottomed out and O2 sats dropped to the 60s. Baby was fine.
 
6) One month after my daughter was born, I passed out in a restaurant. Doctor checked me, said I was fine-anxiety attack.
 
7) A few days later, the same thing happened, but my mom was watching. What I thought was "passing out" she described as a stroke. One side of my face was drooping and my eyes were watering. She went with me to a neurologist who did an EEG and sent me home-stress.
 
8) I continue to have these attacks to this day. One doctor put me on beta blockers when she decided that my murmor might be the problem (that and my resting heart rate would jump to 180 for no reason). As long as I take the Beta blocker these attacks are less frequent.
 
9) Went to a tanning bed sometime after my daughter was born. I had gone to them off and on my whole life and never had a problem. However, this time I got an immediate headache, and felt like I was burning (from the inside out!) I was in there exactly 2 minutes. I got out to look at myself and my whole body looked like raw hamburger meat. Went to the doc and got a steroid shot-allergy to cleaner. Took me 2 more times with my own bottle of soapy water and 2 different tanning beds to learn my lesson.
 
10) This past year I have started having extreme fatigue and migrating joint pain/stiffness. No swelling. Doctors treating it with prednisone. Helps for a while. My hair is coming out by the handfuls. I shake uncontrollably. I have muscle twitching in weird places, like one tiny muscle group near my left shoulder blade or one small muscle on my thigh, etc. I have a weird vibrating sensation in my legs (always makes me put my hand there as if I can feel it with my hand, but of course I don't). Gained weight and had thyroid levels checked. Doctor said they were low but not enough to say I was hypothryoid. I'm losing fine motor control. Having urinary incontinence at times. Balance is off. Forgetting things (short term).
 
11) Was thinking I had Lupus. Checked twice for it-nope. My most recent ailments are an enlarged liver, 10 lbs of weight loss in 2 weeks, and low BP. I am on antibiotics for a UTI and my BP is 90/32, 100/41, 88/30, etc. Doctor is baffled by this but apparently not enough to try to figure out what's causing it. Every doctor I see treats me like I'm crazy. They obviously do not take me seriously.
 
I'm sure I've left something out, but you can get an idea. Not sure. Thought about CNS damage from the bad epidural during child birth, MS, Lupus, etc. At this point I wouldn't care if they decided I was crazy, as long as they would treat me for it with results-lol.
 
Just sick and tired...

Jessica, diagnosis: unsure


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/20/2010 1:10 PM (GMT -6)   
Jessica,

I feel very strongly that if you were to see a LLMD and get a Western Blot test from Igenex that it would reveal that you have Lyme disease, especially considering all of your symptoms. The mere fact that you've pulled that many ticks off of you through the years says a lot right there.

I urge you to see a LLMD as soon as possible. If you need referrals for LLMD's click the email icon and send me an email. I will send you two links to websites that provide LLMD referrals. The sooner you get seen and tested by an LLMD the better off you'll be. This disease is nothing to play around with.

Thank you for sharing this information. It's very helpful and, like I said, I feel confident you will be diagnosed as having lyme disease. I can certainly understand when you say you are, "just sick and tired". Many of us here on this forum know how that feels.

Gary

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 5/20/2010 1:37 PM (GMT -6)   
Jessica,
I am not a doctor and do not presume to know the cause of your symptoms, however what you describe sounds very consistant with Lupus. I have done extensive internet research regarding my own illness and have become familiar with the symptoms of Lyme, MS and Lupus. If the results from your recent tests are inconclusive you may want to seek a second opinion from a doctor who specializes in treating Lupus. Have you posted this on the Lupus forum? I hope that you get a definitive diagnosis soon.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 5/20/2010 3:05 PM (GMT -6)   
I have been posting on the Lupus forum for months. My rheumy suggested that I have symptoms that sound more like MS, so I started researching MS and came across a list of symptoms for Lyme disease. I don't know what I have. I have symptoms of all three (and of course, some of them overlap).
Jessica, diagnosis: unsure


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4284
   Posted 5/20/2010 4:26 PM (GMT -6)   
Hi Jessica,
 
From all my years in being active in the "lyme world", I have met so many who were first diagnosed with lupus, fibro, MS, etc. and 99% of the time it turned out to be lyme.  Everyone has different symptoms and lyme is the #1 fastest growing infectious disease (it was #2 after AIDS but I think it has surpassed AIDS).  The good news is that lyme is treatable, I am proof of that.
 
Did you know you can order the testing kit from IgeneX at no charge?  
 
 
You will need one of your doctors to sign for the test.  Of course it costs money to get tested by IgeneX and I'm not sure if insurance covers the test but wouldn't be a relief just to get it ruled out or in (whatever the case may be?).    The ELISA is worthless, you want the Western Blot.
 
I was sick for several years and doctors kept sending my blood to Labcorp, Quest, etc. and it always came back negative for lyme.  Then years later I found out why:  Lapcorp, Quest, and other labs do not use strains from human blood where IgeneX does..  IgeneX uses more strains and a gel to separate the bands compared to these run of the mill labs.
 
So when my tests came back CDC positive for lyme and a coinfection I felt so relieved to know what I was dealing with so I could get better which I did.
 
Please get tested by this reputable lab.  You don't need to be sick..    Also, lymies get lesions also just like MS.. 
 
Razzle, LOL @ your statement about degrees!  smilewinkgrin
 
Hope this helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 

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