posted
Hi, I recently got a new job with new insurance and a new primary care doc.
I went in and saw her to have my blood counts checked a couple weeks after starting my new job because I have low platelets and I'm supposed to be monitored every 3 months or so.
After talking to her for like five minutes she said it sounded like I had Lyme disease. She ran the test and I tested positive for almost every antibody on the western blot.
I work at a university and the HMO health care program is run through a university medical center on campus. They have primary care, urgent care, a number of specialists on staff.
This Dr. is the first Dr. in five years to even test me for Lyme. So she gets my vote for most competent Dr. I've ever seen.
She didn't know much about the western blot and she consulted with one of the in house infectious disease docs to have me prescribed a 28 day regimen of Doxycycline.
I'll be done with my antibiotics at the end of the week and this Friday I have my new primary care physical appointment.
I've booked an appointment with a LLMD in the area but their first available appointment isn't until mid september.
**Given that I have low platelets can I at least expect my primary care doc to run the coinfection tests?**
I'm hoping that she'll refer me to this Lyme specialist but given that they have an in-house infectious disease doc I feel like her hands will be tied for only referring me to the specialists available there. I'll still ask.
**My main question is what can I expect my non-LLMD to do for me now?**
**Is there any advice on how to get more testing of coinfections or how to get more antibiotics to further treat the lyme while I wait to see a specialist?***
What should I expect from this appointment?
Posts: 154 | From Boston | Registered: May 2014
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi Sam. First, I want to applaud your doctor for knowing to test and also know what she doesn't know. But, if you have been feeling bad for 5 years, 28 days of doxy is not going to be enough. It's good you have an appt with an llmd.
It is unlikely that the llmd will take insurance anyway. So you really don't need your pcp's referral. But you can ask her to test for coinfections and your CD57. most likely your insurance will cover labs where ever they are done, even if the the LLMD does not take insurance.
If you are handling the doxy... I would ask your dr to continue it until you can get in with LLMD. BUT, and a very important BUT you should ask her to double your dose. Doxy at the usual dose (100mg twice a day) is bacterialstatic and has been shown to drive the Lyme spirochetes into a cystic form, where they can hide from abx. Another ABX they use is Ceftin until you can get in with an LLMD. Ultimately, you probably have to take 3 different antibiotics for a long period of time.
If your Dr. is open to learn more about lyme-- you could give her the Burrascano Guideline
Or, tell her about Dr. H's book "Dr. Why can't I get Well?"
You should read these too.
But if you already haven't you should really read "Cure Unkown" by Pamela Weintraub. It reads like a novel and will fill you on the history, controversy and give you an idea of the medical road you'll be on.
The good news, is you have a true diagnosis, and you have a LLMD lined up.
I'm sure other here will have more info. and advice. Hope you are not feeling too bad!
[ 05-30-2014, 07:06 PM: Message edited by: Lymetoo ]
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Expect nothing.
If you mention coinfections you will likely be offered, "The Look" and if you mention you still don't feel well, you'll likely be offered antidepressants.
Unless this doc is one in a million... Keep your expectations low.
IDSA says 28 days of doxy will cure just about everyone. So this doc will likely attribute any ongoing symptoms with you as a mood disorder or "just getting older", because you're "cured".
Sorry I can't sugarcoat it.
Just keep your expectations low, and you won't get offended.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
In order to even be listened to at my initial appointment I made a list on my cell phone of my many varied symptoms that I've had over the years and scrolled through it reading them off to her in a rehearsed sarcastic incredulous tone.
I knew that if I had the sound of any anxiety or concern for my own health in the tone of my voice chances were good she would become uncomfortable, assume I'm crazy and disregard the content of what I was saying.
I certainly prefer to prepare for the worst in this Dr patient scenario after going through what you have to go through to get medical treatment.
I'll ask her to test for coinfections and CD57 and try to get a larger dose of abx. I do expect that she won't be able to do anything.
I think I'll bring up the Burrascano guidelines to see what she says. I don't think she'll start treating me with them but she at least knew what Lyme disease is so I'm curious to know how much she knows about different treatment options and what her opinion of that is.
Posts: 154 | From Boston | Registered: May 2014
| IP: Logged |
posted
Yes as GretaM says keep expectations low. Hopefully open minded.
And be prepared to being rushed out because of a possible confrontation.
Might tell you your old , your crazy ,depressed ,stressed out ,it's the type of work You do. Or have another illness.
A funny thing happened to me prior to being diagnosed with lyme and bartonelia .
I went to hospital and that was my last time ever .I could not put my arm down because lymph node was so swollen, I could not walk I had huge swelling around kidney area
They took all blood work , Mir ,cat scan .the doctors saw for themselves all the swelling and pain I was in.
But when all test were finished they came back and told me I was constipated.
My girlfriend and I looked at each other, smiled , gave a little laughter, said thank you and left hospital
I thought I heard it all. But this was unbelievable
Posts: 238 | From Where | Registered: Aug 2012
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
In order to even be listened to at my initial appointment I made a list on my cell phone of my many varied symptoms that I've had over the years and scrolled through it reading them off to her in a rehearsed sarcastic incredulous tone.
I think that's a pretty good plan!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| 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!
Printer-friendly view of this topic