I just met my new dr today...had an excellent visit with her. Before I could even ask about anything lyme related, she was nodding her head at my description of symptoms. When I voiced my suspicions, she broke in and listed off all the OTHER tests that are NOT routinely done and ordered them for me!!!! AND, she is starting me on treatment tomorrow - BEFORE the results are back - because her gut is telling her it's a ticborne illness. OMG. I nearly hugged her and cried. Finally!! A DR who listened to me and didn't just blow me off.
I'll post more details when I have them. Just had to share!
Oh, and she's 10 minutes from my home up in the northwest corner of CT. The best.
Posted by Catgirl (Member # 31149) on :
Awesome Sugar! I am so happy to hear this. Every doc on the east coast should have a clue by now.
Posted by Lymetoo (Member # 743) on :
Is she an LLMD, or just a very smart DR!? Posted by sugarjo62 (Member # 41896) on :
Hahahaaa, I asked her and she said she just KNOWS. And then she said, "Well, duh, we live in the Lyme capital of the states...it's stupid to ignore the fact that more and more ticborne diseases are becoming more and more prevalent."
And she also said the treatment is NOT doxycycline. So I am hopeful.
Posted by droid1226 (Member # 34930) on :
Is she affiliated with a large hospital or does she have her own practice?
Posted by Judie (Member # 38323) on :
I'm trying to find an alternative to doxycycline. I just had a very allergic reaction to an antibiotic and my doc and I are trying to figure out alternatives.
Could you PM me her treatment?
Thanks.
Posted by sugarjo62 (Member # 41896) on :
She is affiliated with **. I asked her about that and she said that she is continuously treating MANY patients with chronic lyme and other ticborne illnesses. In fact, she is currently treating herself as she has babs and anaplasmosis. OMG!!!
**edited name of hospital to protect her**
[ 09-27-2013, 02:30 PM: Message edited by: Lymetoo ]
Posted by sugarjo62 (Member # 41896) on :
Judie, once I have it in hand, I will PM it to you, yes. I don't know the name of it yet.
Posted by lax mom (Member # 38743) on :
I have begun to have a theory that once Drs or their family get Lyme, they come around to the ILADS view of treating.
Posted by nefferdun (Member # 20157) on :
I am really happy for you and everyone else that is fortunate enough to visit this doctor. I guess doctors have to get it themselves or have someone close to them get sick before it finally penetrates their brains.
Maybe whoever is collecting the names of LLMDs could add her to the list.
I can't say I have had the same experience. In fact, I was just going to post how ticked off I am.
Posted by GretaM (Member # 40917) on :
Wow! That is a great first appointment!
Awesome stuff Posted by munchin (Member # 38744) on :
Great news, good for you...
Posted by Keebler (Member # 12673) on :
- Yes, good news.
Some advice, though, do not share this doctor's name with anyone just yet. Wait to see if she is able to offer full treatment but also
to see if she would be okay if you refer others to her from your local lyme support group or from here (privately)?
You should ask her first. Even then, be very careful to not talk about her or treatment in public where anyone could overhear you. You never know who might be within earshot and there are many doctors and insurance companies out there very eager to stomp out anyone who assertively treats lyme.
Back to if you can share her name with others looking for lyme / TBD assessment / treatment.
She may not be in the position to accept very many "complex" patients -- and it could be tricky with her bosses as to if folks start talking about her treating lyme.
It may be best to not even talk about lyme to anyone on her staff as you check in or out - or in the waiting room.
She may need to "fly under the radar" -- so communicate with her first about how to go about her helping others if she is actually going to be able to offer you a full treatment protocol.
And she may not be able to do so in full force of an ILADS protocol (again, politics, her bosses, etc.) but, even if there might be some restrictions, at least you know she "get's it" and could be an excellent resource for you in various ways.
One step at a time, yet it's great to feel some spring in that step and know that, however this might proceed, it appears to be a good thing.
I once lost even getting past the door with a doctor who had previously treated someone for lyme because her boss found out.
Apparently, she had been "flying under the radar" and got "busted" so much so that even the staff on the phone when I said that the former patient told me that doctor would treat lyme, well, the phone person told me that "no one in the office is allowed to discuss lyme and no patient requesting lyme information or treatment is allowed to book an appointment in that office. They just don't "do" that."
Now, I live in a different state than you but, still, just be very careful with how you proceed so that you can keep her on your team. -
Posted by Keebler (Member # 12673) on :
- You might ask her if she is able to attend the ILADS conference in the next couple weeks.
- Recently got an email reply to my inquiry and have not checked in the last week to see if maybe a change but -- about web streaming the conference as done in the past 2 years. Sad news but I figure this must cost a ton of money and a lot of staff power / equipment. Sigh.
ILADS Response: "At this time there is no plan to live stream the San Diego Conference."
ILADS is proud to announce a one day Basic Lyme course in San Diego, Thursday, October 17, 2013.
AMA CME Credits
This course is designed for medical professionals who are new to the treatment of tick-borne diseases, or would like a refresher course on the basics of diagnosis and treatment. It will also serve as a primer for physician assistants and nurse practitioners who are practicing in the offices of Lyme literate physicians.
ILADS encourages participants to continue their learning October 18-20 at the annual ILADS conference in San Diego
ILADEF PHYSICIAN TRAINING PROGRAM -
Posted by sugarjo62 (Member # 41896) on :
Thanks, Keebler. That is my position.
As I recently stated in a pm to a poster:
I changed drs because mine was a nut and her staff was worse. By chance a walk in place opened up across from my work and I liked the hours and the aprns I had seen so when I learned they had a woman dr on staff, and OD, I took the leap. I'm glad I did. I was due for a physical and once I met her I knew she was perfect. The information she already knew about ticborne illnesses was a bonus. I was actually waiting to call the ilad I found down in the southern part of the state until I met this new dr. I'm glad I waited!
I got the blood work drawn today-I'm hoping to have an answer by Friday. I know it sounds stupid, but after all the tests I've endured these past few months, I'm kind of hoping the bloodwork shows something positive so I can begin treatment! I want to feel better!
My husband watched a very informative documentary all about Lyme, etc., last night to better understand what I'm going through and the stories were mind blowing.
Posted by Judie (Member # 38323) on :
That's wonderful news! How lucky you are to happen upon a doctor you like.
What's the documentary? I may need to show my husband that.
Posted by Keebler (Member # 12673) on :
- I certainly do not want to rain on your parade. I just want to be sure you are not deceived by the system.
Today is Thursday. If you got blood work for a lyme test drawn today, that could jeopardize the test.
If you expect results tomorrow, I question what lab is doing the test. There is not enough time. If they wait until next week, the sample can be too old.
What lab is doing this test? What test? What physical city (how much travel)? How was it shipped? All this is to be considered.
When you get the results, be sure to note the:
sample collection (draw) date and time
the delivery time of sample
the lab's physical location (state, city)
make note if this was "farmed out" to a different lab
the time of test start - and completion
Are they going to test ALL BANDS if a Western Blot and do both IgG and IgM? [Typically only Igenex will check all bands so check it against Igenex web site for that detail. Igenex: http://www.igenex.com/Website/ ]
Does this doctor require a CDC positive for treatment [if so, she may have no choice in the matter]
And if she will treat you, would that be along the lines of ILADS suggestions?
What about assessment for a full range of tick-borne infections? That's really important, too.
Reasons for False Negative (Seronegative) Test Results in Lyme Disease -
[ 09-26-2013, 05:07 PM: Message edited by: Keebler ]
Posted by CherylSue (Member # 13077) on :
I agree with LAX Mom and Keebler. Good info here on how to handle you new doc.
My best LLMD was a doc who had Lyme Disease himself. He treated aggressively, and I made the most progress.
Unfortunately, whether it was his fault or the quagmire ILADS docs have fallen into, my favorite doc lost his license.
Posted by sugarjo62 (Member # 41896) on :
Thanks Keebler - I printed out your message so I can have it handy for information.
Posted by phyl6648 (Member # 28522) on :
Wonderful News!!!! How I pray for this. Would you please PM me the med and test.. Anything as I can no longer afford or travel to a LLMD..
Posted by lpkayak (Member # 5230) on :
"I have begun to have a theory that once Drs or their family get Lyme, they come around to the ILADS view of treating."
i am sure your theory is correct. i have seen this first hand for yrs and also seen it happen to many others
also-re: keeblers post on not being too vocal about docs being LL...i have found this a lot too.
some docs do get it...but are raising families or have other reasons they cannot risk losing their licenses. they can do a lot to help...but need to keep it quiet. they need to tx many more ppl without lyme to not get into trouble txing those with lyme
when doc bashing goes on here...it is important to know docs are ppl too...and put in a really awful position when they KNOW something...but will lose their jobs if they act on it. i still appreciate that they have brains and think for themselves and validate me...but i get it why they cant tx me aggressively
Posted by sugarjo62 (Member # 41896) on :
Okay, so it was apparently a false statement on my part about it being good news. Sorry to have misled anyone!
Drs office called me today to tell me that my tic panel came back normal and negative. The nurse passed on the drs suggestion to do a course of doxycycline and then revisit this again but that none of my labs would indicate a need for any further testing or treatment of my symptoms. This, however, was not followed up with any advice on who to see about my symptoms.
So I am feeling quite defeated this evening. This dr had told me she would treat me regardless of how the tests came back because she felt that all my symptoms were indicative of some type of tic borne illness...and now, when push comes to shove, she's backing down.
Now what? I almost want to take the doxycycline just for the few weeks of relief.
Posted by Lymetoo (Member # 743) on :
Sounds about right for an IDSA Dr and hospital.
Posted by Keebler (Member # 12673) on :
- Really sorry to hear that. My guess is that the doctor's bosses put their IDSA foot down. I hope you find a good ILADS educated LLMD or LL ND.
From a post of yours a few weeks ago, you wrote that you : "tested positive three years ago and given the regular protocols for Lyme - 3 weeks doxycycline. . . ." (end quote)
As yours is not a new case . . . please do not take doxycycline ALONE. It can cause far more damage than it's worth, by itself.
Attention to the cyst form is required at the same time. There are few different ways you might approach that if you are on your own. GSE (grapefruit seed extract) is one.
From my own person research, it seems that both Andrographis or Berberine might also be of some help against cystic form, though best under a LL supervision as they would know more.
Some LL doctors use GSE &/or flagyl.
-----------------------------------------
How just doxycycline (or other antibiotics, alone) can cause chronic lyme:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
[ 09-30-2013, 03:12 AM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Still, get a hard paper copy of that test sent to your home. Just tell them you keep a copy of all records just to help your memory for any future questions.
For which ever LL doctor you do see in the further, there may be some telling points to whatever tick "panel" they did, even if it's CDC negative (like that's a surprise).
As your blood sample was drawn this past Thursday, I'm sure this was not done by a lab really equipped to do adequate testing.
Though, that they called you about this on a Sunday is curious. My guess is they want to drop you as quickly as possible. Sorry. I know you were very excited and hopeful, yet, this same scenario has played out many times this way.
(Usually) a doctor somewhat new to all this knows more than the bosses want them to and then when they find out, they put pressure on to squelch any talk of treatment.
Or the doctor may know some about lyme but is still ignorant of the test errors, the complexity of treatment, or the IDSA / Insurance politics of it all.
Depending upon various things, this doctor may still be able to be your PCP and the two of you might come to some kind of understanding so she could be basic support as you treat with a LL doctor.
Whatever, I'm sorry. I hope you find an experienced and wise doctor very soon who will be better equipped to fully assess and help you proceed. -
Posted by sugarjo62 (Member # 41896) on :
The blood was drawn last Monday and the tests came in on Saturday. They are open 7 days a week and so they called me on Sunday morning.
I don't think they are trying to drop me, but I do think the Dr is backing off a bit in regards to my insistence that this is tic related. I'm picking up the blood results today at their office and will put it in my increasingly fat medical file!!! Oh my!
Posted by glm1111 (Member # 16556) on :
Ask for a copy of the results to see if ANY bands showed up. I had band 41kda show up which is lyme specific and was told I was negative by an ID doc. They have to give you a copy, so don't let them ignore you.
Then come back here and let us know what bands if any came up. Lots of smart people on the board who can give you details on specific bands. Sorry you have to deal with this ignorance.
Gael
Posted by Keebler (Member # 12673) on :
- Re: Test draw timing: Oh, I thought you posted last Thursday that you had blood drawn (for those new here, late in the week draws can be worthless). Maybe that was someone else.
Oh, yeah, I see above that you posted that on Sept. 24. That was Tuesday (or late Monday night) when posted.
My dates and days of the weeks must have taken a tumble. Thought that was on Thur. -- probably the day I read it (without noticing the date). Or I saw the date underneath (with the next post), which was Thurs.
Sorry. Anything to do with numbers can confuse me.
Still, all the considerations with testing, though, check it all out when you do get your copy. It won't change much regarding your outcome with this doctor but it will be interesting to track what you can. -
Posted by Ellen101 (Member # 35432) on :
Actually I think she is doing what she said. She is treating you regardless of what the test showed, BUT her idea of treatment is just doxy...so I don't feel she mislead you just that she is misinformed as to the treatment protocols.
Posted by Judie (Member # 38323) on :
Gosh, how frustrating about your lab results!
I saw a few LLMDs and they tested for various co-infections. Then I found the lab requisition sheet for Stanford's CFS clinic.
I asked my doc to test for anything on there I hadn't been tested for and came up positive of several things that even good LLMDs miss.
Here's a link to the tests (I did the tests through Labcorp by the way, not Focus).
I have a copy of the results from the lab. I am not that skilled in reading them but one thing I noticed was that each test was not given a number/titre. Instead, the result just said if it was below the positive test number. For example:
Babs - Reference rating is <1.16. My result - <1.16
and so on...
The only item that stood out was on my CBC results. The Lymphocyte, Absolute came back LOW. The flag reference is between 1.50-4.50 and mine was at 1.11. I do not have any idea what that even is...let along how to interpret that or if it has any impact whatsoever on any of this.
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