lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi All - my nephew was discharged today from the hospital. Tests all came back negative.
The floor doctor said she believed his problems were "psychosocial" in nature and recommended psychological evaluation. I told her the same was told to me 4 years ago when in fact I had Lyme disease.
I told her he has at least 15 symptoms of Lyme that I could count off for her and she said, "For me, Lyme is not even on my radar."
She went on to tell me that very few people with Lyme end up with the chronic, disabling form like I have, and I told her I begged to differ.
She started to get very angry with me when I asked her how much she knows about Lyme. She said she didn't know much, but she DOES have 8 year of medical training while I am just a layperson.
I responded, "Yeah, but I'm a layperson who's had chronic neuroborreliosis for four years so I think I know a thing or two about it."
She was very upset at my perceived lack of respect for all of her medical training.
She told me that if his tests come back negative for Lyme (the results will be back next week) then my sister and I must be reasonable and move on to a different possibility for his symptoms (aka psychological).
I said, "Aren't you aware that Lyme tests are not that accurate?"
She said, "Yes, I know that there are a lot of false positives."
I said, "You mean false negatives, don't you?" I said that even as we speak there are probably hundreds of people in hospitals all across the country having this same conversation, and there are thousands of people bedridden or close to it because of Lyme.
She just put her blinders on and closed her ears.
I was angry with her so I had to put in one last jab - I said, "So, you'll just send this 11-year-old boy home with no help, no consideration that this might be Lyme, and no intensive thought about what could possibly be causing his symptoms beyond the pat answer of a psychosocial issue. That is just plain old being lazy, Doctor."
With that, she said she wouldn't speak to me about it anymore, she said that the doctors who in the past had told me I needed psychological evaluation were right about me, and she huffed out of the room.
I apologized to my sister afterwards, because I didn't want to get into an argument with the doctor, but the doctor just got so heated and wouldn't listen, and she kept talking over me.
She was so concerned about me disrespecting her that she forgot that her young patient was in serious trouble.
I honestly don't know if my nephew has Lyme, but he sure does act like I did when I first became ill.
Here's a timeline of events and symptoms:
March, 2007 - On a mild day goes to beach on Long Island and walks through tall grass to get there
Two weeks later - fever, sore throat, conjunctivitis, headache, ear ache
May, 2007 - extreme fatigue, swollen glands in abdomen, terrible abdominal pain
June, 2007 - above May symptoms continue, but now include sore head, achy neck, dizziness, malaise, chest pain, rib pain, jaw pain, light sensitivity, red ears and face, weak shoulders, pain in arm and leg muscles, back pain, achy joints in arms and legs, leg and abdomen tremors, and can't bear weight or stand up straight so can't walk
Sounds like Lyme to me.
When the doctor left the room in a huff I told my sister, "She's just an IDSA duck. Don't let her upset you." My poor sister cried all day long today.
On Monday I will be calling my LLMD with hopes she can evaluate him and get him on the right road.
Amazingly, just before discharge, my nephew's GP came in and did not discount the possibility of Lyme and willingly wrote a prescription for doxycycline. I hope he will work with the LLMD we get for him so we can save this boy from years of agony!
The GP does not, however, believe this is Lyme and wrote in the medical records that my nephew has a post-viral syndrome which will resolve in one or two weeks.
I sure hope he's right, but my gut tells me he isn't.
Thanks for listening, All.
Your friend, Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Can you get him into the famous child LLMD in your state??? I bet he will take care of things correctly,and can tell it from a head case dx!! Gee ,,, This child deserved SOOOOO much better!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
bettyg
Unregistered
posted
good for you being your sister/niece?'s ADVOCATE!
didn't catch this; did they take blood for wesern blot igm and igg and send to IGENEX or coinfections to FRY lab in arizona?
IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
All I can say is,,,be prepared for duck soup results!!
I can see the test coming back negative because its too early,,,I can see the test being negative cause he was on any abx.
I can see the test being positive and the ducks coming in and saying "Okay,,,this is a false positive!!" Cause____blah___blah___blah!!!
I think you have done as much as you COULD have given the 'brain dead ducks' you were working with. MAYBE,,,a bit too aggressive,,,BUT given the heat of the moment and YOUR experience,,,quite understandable!!
I have found if you are talking to one of those BDD( for meaning of that b = brain, d = dead, d = ducks), best is to shut my mouth, dont push the issue cause they push back 5 fold. And exercise my right to "walk" away!!
There are better docs who are LLMD's and THAT'S where your nephew belongs, nothing short of the best,,,he has TOO much to lose!!!
If it takes too long to get to one,,,can you 'find' some abx for him meantime??? Maybe from YOUR llmd??? Do you have good repore with your LLMD?? Can you get him in sooner than later??
I STILL think call Dr. B's office!! Like I say your nephew 'DESERVES' the BEST!!! Let the ducks go, they cant help themselves!!rambings of--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi bettyg - we requested the hospital send his blood to either Igenex or Stony Brook and they agreed, but then turned around and sent the blood to Quest.
My LLMD is a pediatric LLMD in PA and very good, so I hope she will be able to get him in for an evaluation soon, if my sister continues to agree with this approach.
Yes, just don, we have already written off this particular hospital my nephew was in - I mean, they didn't even do a thorough workup on him.
They just decided it was either post-viral or stress-related and went no further.
I just talked to my sister on the phone and she asked me to wait on calling my LLMD. My nephew has just taken his third doxycycline pill and his arm pain is lessening. He has a 28-day prescription.
She wants to see if he has a herx before I call my LLMD. She also wants him to see a rheumatologist and neurologist at Upstate Medical Center in Syracuse.
I told her, okay, you're the parent, but I did warn her that I'd been to the Syracuse hospital with seizure-like activity last year and they told me I had conversion disorder.
So, as it stands right now, he still can't walk but his pain is less overall, my sister is starting to feel hopeful this isn't Lyme and is going the route of mainstream specialists, and she'll call me if she wants him to be evaluated by an LLMD.
The good news is that he IS on doxy just in case.
I will be at my sister's side whatever the outcome and whatever she wants to do. I don't think my nephew has had a thorough workup to rule out all possibilities yet.
Thanks for listening. - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Well, my sister called me again today and now she DOES want me to call my LLMD tomorrow.
She recalls that she noticed two bite marks on his abdomen in April but thought they were flea bites at the time.
She also tells me my nephew has been to Long Island not just in March but in April, too, and both times walked through brush and tall grass near the beach.
Will keep everyone updated if interested.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
My nephew has circular rashes and can walk with a limp since he started doxycycline two weeks ago.
He has an appointment with my LLMD on July 18th. He still has a lot of symptoms.
He doesn't want to talk to me on the phone because he's afraid. He doesn't even want to deal with me because I have Lyme disease myself. It makes me sad but I understand. He doesn't want to have Lyme. I could never blame him for that! I lived with my sister for awhile when I was really ill and he saw first-hand how sick I was.
My sister calls me several times a day and I am glad to be a support for her. She's a great mom.
Hoping for continued prayers for my dear nephew!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
You did a most wonderful thing.
You possibly saved someone else from a lifetime of illness and pain.
I am sorry your nephew has Lyme.
I bet your sister is so greatful for your timely intervention and support.
Give your nephew some time. He will begin to understand how you "gifted" the knowledge
You have. He may be confused into thinking as you were the reason he is getting a Lyme diagnosis
That it is somehow related to you.
Hang in there. I am patting you on the back right now for a job well done.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Has your sister seen the page of rash pictures?
posted
Your sister and her nephew are lucky to have you in their corner.
Remind her to take photos of any rashes as they may go away before the LLMD appointment.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hello, all. Thank you for your kind words. It hurts to think of all the children affected by this terrible illness, including my son.
My sister is a very thorough lady and has taken pictures of every rash. She did look at the pictures on canlyme but didn't think anything looked very familiar.
I saw the pictures of my nephew's rashes myself and one of them looks just like a bart streak.
This morning she called to tell me that last night my nephew was frightened by what he called "monster shadows" in his bedroom. He also heard the doorbell ring in the middle of the night, but there was no usual reaction from the dog.
I told my sister to write that down amongst all his other symptoms. She's keeping a detailed list.
My sister told me yesterday that her son was bitten by an insect on his calf while in Maryland when he was two and she took him to a local clinic there. They diagnosed it as a "spider bite". His calf was swollen and red.
Perhaps he was infected then, and now with a second bite severe symptoms are manifesting.
I just can't wait for my doc to see him and get the testing done and back.
Will keep updating! - lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
posted
Hi Lymelady, Your nephew is one lucky guy having you for an aunt!!! It's amazing how much these kids have to go through. This is weird kind of twist, but it's a good thing you have lyme so you can help him too!
Your sister is doing the right thing by documenting everything. Right down to all the misdiagnosis. We kept a daily journal with Greg writing down meds, symptoms, extent of fatigue. It came in so handy. It's amazing how much you can forget.
I know we just started summer, but your sister also needs to be thinking about his schooling for next year. Is he well enough to attend school or will he need home tutors? I know she has more than enough on her plate right now, but schools move very slowly. Just don't wait until school starts to put a plan in motion.
Good luck to you and yes, please keep us posted. It's mind boggling that dogs can get a lyme vaccine. And now they can also get a cancer vaccine. And yet people can't even get a proper diagnosis.
As always,
Kathy
Posts: 64 | From MA | Registered: Mar 2006
| IP: Logged |
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Oh gosh, our beaces down here on LI are infested with ticks. My best friend got bit sitting on the sand babysitting kids.
Please keep us updated on his health. I hate to see children get sick.
Posts: 1603 | From ny | Registered: Aug 2006
| IP: Logged |
bettyg
Unregistered
posted
thanks for the updates; yep, your nephew/sister are mighty lucky to have you "sis"! may he be one of those cured!
IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hello, All - yes, mothergoose, my sister is already thinking about possibly having to homeschool her son this coming school year, at least part of the time, and has already talked to the school about it.
My sister has decided to quit her job at Cornell University to be with him as needed.
The other night my nephew told my sister that he saw the characters from the "Narnia" movie in his bedroom walking around. He's scared to go to bed now.
I knew the beaches on Long Island have a lot of ticks - too bad the dumb doctors wrote in his medical records at the hospital that the "child has not been in a Lyme-endemic area".
I wrote a letter of complaint to the hospital reporting to them how the resident floor doctor and I ended up arguing because of her stubbornness and pride. They told me they would discuss the matter with her and her supervisor.
Yeah, they'll probably discuss what a nut "Auntie" is! LOL.
Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Keep up the good fight. I suffered with Lyme my whole childhood and didn't get any help till I was 20. The pain I went through that could have been avoided.
Good luck, he's lucky boy to have you there to fight for him!
Posts: 94 | From Greenville, Tx | Registered: Apr 2007
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I agree with TC. One of my sons has classic bartonella rashes and he has bipolar disorder. I'm sure he was infected either in utero or from breast feeding.
He's 28 now, and has Kaiser. I may have to take his trust fund and use it for Lyme treatment, but the hard part will be getting him to agree to it.
At least his father finally recognizes that he could have Lyme, after I sent him a link to bart rash photos.
Be glad yo have found this now and not after it has done more damage. I'm afrad to think of what herxing might be like for my son.
He can't go off his antipsychotic or he ends up psychotic, again, And each time it's harder for him to return to himself. He now realizes he has to live with that all his life, but to add another chronic illness to it wiil be hard for him to take.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Can't wait until tomorrow, everyone! My nephew finally gets evaluated by my LLMD. I'll let you all know how it turns out!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic