My 79 year old father has been struggling with mysterious symptoms for the last 4 years, some similar to mine. I was recently diagnosed with Lyme, Babesia, Bartonella and Ehrlichia...the full meal deal.
Anyway, my dad was on the same hiking trip with me where I believe I was infected, he recalls a bullseye rash (I didn't), along with off and on Bartonella streak-type rashes.
He is old and stubborn. He refused to go to my LLMD as she doesn't take medicare and we couldn't find an LLMD that did. He insisted on seeing an ID doc, against my advice.
At the first appt. my dad had an IGeneX kit in hand. With some convincing, the ID doc did agree to order the IGeneX tests.
At his follow up appt. yesterday, the ID doc told my dad he didn't have Lyme, gave him a one page test, which was the courtesy PCR test that IGeneX does, and sent him on his way. My PCR was negative as well, but not my WB or co-nfection panels.
I am not surprised, but so FRUSTRATED. My dad drove to my house, 2 hours away from the ID doc and showed me his results. I called the ID doc office, requested the FULL testing be faxed to us, WB and co-infection panels included - we've yet to receive them.
I'm not sure why I'm writing, I guess to vent and looking for "general support." The stress of this is making my neuro symptoms worse!
My plan is to call the ID doc office, again, this AM. If they don't send it within an hour...my dad intends to drive the 2 hours one-way and sit in their office until it's provided. He is older, not as well read as I am on Lyme, so just didn't insist at his appt. yesterday.
I called IGeneX, just to be sure, and they assured me that they did do an entire WB panel and co-infection panel. Dealing with these ducks is still an unreal nightmare to me!
Thanks for "listening." I can't stress enough the importance of going to an LLMD to anyone new to this; you are otherwise completely wasting your time. Wishing improved health to all of you.
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
NO, Its quite believable,,,actually quite normal for those idjiots.
We have an alligator pit to throw such worthless ducks into to keep the critters fed properly!!!
I here ya,,,I hear it ALL too often!!thinks--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
posted
If you don't get a hold of them today, you might send a certified letter demanding the results. It's ridiculous and suspicious that they didn't give them.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
That would make me soooo mad!
Those test results belong to your father.
He paid for them.
The duck just wrote the order.
Tell your father to call today and demand these results be faxed immediately.
Idiots!
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
quote:Originally posted by sixgoofykids: If you don't get a hold of them today, you might send a certified letter demanding the results. It's ridiculous and suspicious that they didn't give them.
I'm off to find the PIT!!
ID ducks are SO lame.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
They are your father's records - the doctor has no right to withhold them
If you are calling on behalf of your father:
Start off nice, but explain the situation, and then let them have it if they do not agree to forward you the records immediately! There are agencies you can report them too - have the names of these agencies handy to use if you need to.
If you immediately attack the second you get on the phone, they will get defensive, but if you start off sweet and appeal to them rationally, then attack if necessary you will catch them off guard!
I like the phrase "This is unacceptable" Also point out that your father is elderly and you believe they are taking advantage of him (even if this is not true, playing this card might spring them into action)
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
| IP: Logged |
posted
Thanks all for your ideas and support. After 8 hours of a run-around, we never got faxed the report. Twice IGeneX faxed the doctor verification sheet, but the doc office "never received it."
I was kind yet firm at the end of the day when I spoke to the doctor on the phone personally. So, of course, it's now the holiday weekend - so more waiting. I prepared a letter on behalf of my dad that we will send certified (thanks for the idea) on Tuesday if we don't get the results; I will make one last phone attempt on Tuesday.
Yes, Lymetoo...my thoughts exactly...my guess is there is some strong indications of Lyme and/or co-infections. For the doc to act like the PCR is all she received and even worse to make her decision that it's not Lyme, supposedly based on that test alone, is crazy.
It's somewhat insulting for her to think we are that clueless and uneducated. And yes, I believe they were trying to take advantage of my elderly father who is definitely not as Lyme literate as his infected daughter.
Little did they know, they will have me to answer to! Thanks again everybody for your support, help and ideas.
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
posted
Again, thanks. Betty G - great idea about calling Dr. Harris. I know my LLMD consulted with his son about my tx...I will try calling.
Also, yes...though I will call my dad and remind him, he must send it certified with a receipt. I did tell him that, but he doesn't always listen to me - like wasting time with the ID doc vs. going directly to an LLMD, grrr. Thanks guys.
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
posted
I'm still fuming about that ID doc..."you don't have Lyme" comment based on the Lyme PCR test alone. I finally got my dad's WB...on IgM he is ++18, plus IND for 31, 34 and 39 and +41. IgG is just +41 and some other non-specific band is + as well.
Also, positive for Babesia, both on the FISH and the antibody test, grrrrr!! I am happy he got somewhat definitive answers about what he's dealing with(sad he has Lyme)...but the duck ID doc makes me SO angry.
What about all the patients that aren't informed? That just are sent on their way, sick as ever with no help or answers...grrrrr!!!
Anyway, thanks for all your support.
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
posted
Just a question. Who do you report these doctors to when you are not given infomation or test results from your doctors? Isn't it a patient's right to receive copies?
I may be wrong, but this is outrageous, but I am not surprise. ID ducks are for the birds!!!
Glad you got everything resolved..to a point.
Hugs, Perplexed Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
| IP: Logged |
posted
Wow, what a run around and what a mess...Glad you finally found answers though. Hugs to you and your dad.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
| 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!
![[Mad]](mad.gif)
![[sleepy]](graemlins/sleepy.gif)
![[cussing]](graemlins/cussing.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic