posted
How does one go about encouraging, pointing in the right direction to persuade a PCP to become ILADS knowledgeable/member?
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
posted
Hey KY woman - I think it's called ..... Move out of Ky! I am a Ky gal too and can get absolutely nowhere with anyone in Lou! P
Posts: 16 | From Louisville KY | Registered: May 2012
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
hah! great title. They have to be OPEN minded and not have big egos. IMO hard to find.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
Maybe suggest that they watch the ILADS conference coming up in November when they have some spare time.
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Have your tried printing off Dr B info on lyme.
He is one of the most world famous docs. Even though you probably can't get PCP to be open to all Dr B's tx protocols...at least it's a lyme education.
But yeah like CD57 said if they are one of those ego docs? You're wasting time. But getting PCP to become ILADS educated/member, not going to happen.
Many have become LLMDs after a family member or themselves have lived through it. That gets their attention and passion to help.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
a little info at a time, an occasional print-out: do not overwhelm. Many docs are willing to listen and learn. But they also have limited time. So try to introduce information as it seems appropriate to what you are discussing at any given time. And then leave a few printed pages of facts/links with the doc to read later ... just a few so it may actually get read!
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Give your doc a copy of "Cure Unknown".
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Agree with ESG. I found too much info just wasn't looked at by the doc. The ILADS web site has a couple of good brochures, one geared to doctors. Concise, but good overall information on both TBD's and the political climate surrounding it.
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Start here - and ask if they could block of some time to "attend" the ILADS conference that is coming up soon. They can watch some sessions on the web live during the conference (DVD set later for purchase).
ILADS -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Still, IMO, no doctor can possibly start from zero and get up to speed to be able to treat you. However, they could be a good PCP support in some ways as they learn.
Their boss, their clinic, etc. may not allow them to learn or do too much, though. That is to be considered so be sure to not mention this to any of their co-workers, no nurses, etc.
Links in the next set will explain why they may need to "fly under the radar" until they grasp the finer point of lyme politics. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- THE BASICS
for you, first. After you can sort through the basics, then, you'll have a better understanding of how important it is to move calmly and slowly.
I'd still start with the book CURE UNKNOWN and the ILADS site with the conference schedule printed out for them.
But - all the other detail here is for you, first.
See listener comments, too. They show us how very wrong the ID doctor is who was interviewed. Very typical, though, and why ID doctors are not the ones who help those with lyme.
If you suggest learning about lyme to your PCP, you also need to know that they may well be face with the same words as the ID doctor interviewed in this NPR link.
------------
Your LOCAL (area) and STATE LYME SUPPORT GROUPS are vital to help you better understand how safe it may be for your doctor to learn more - or the general willingness of the medical community and ID doctors, in particular for Kentucky.
ID doctor - Infectious Disease specialist, 99% of whom are tied at the hip to the IDSA and must follow their guidelines about lyme -- which are a disaster.
IDSA is explained above in the "WHY ILADS" thread. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you do take them a copy of CURE UNKNOWN, keep it in a bag and do not let any staff see this.
Give it directly to the doctor when you are alone with him/her.
I know this sounds strange but it could make a huge difference in their ability to be able to read the book without being hassled by their boss.
Staff talk among themselves and you need to be very smart about keeping your doctor protected enough while they can learn a bit.
In some clinics, doctors are PAID to not treat (or even not test for) Lyme. Seriously. If any one doctor starts to get out of line, their job can be at risk. You need to know this.
How you conduct yourself about this with your doctor can make a huge difference in their safety zone - they may WANT to read the book you bring or
watch the web ILADS conference. But, do not advertise this all over the office (even to a nurse). Fly under the radar. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Kentucky, is really trying all the stops to stay with doc in her insurance plan. While I completely understand that need, sometimes you've got to do what you have to do.
The Cincy LLMD, I'm sure will work with you to try to keep costs down. Remember she and her children have been there done that.
The ideal situation is to have a LLMD and a PCP that can work together to help keep some costs down. Like you LLMD wanting certain tests done and your PCP uses his signature to sign off on these tests. That could save some real money.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by Keebler: - Still, IMO, no doctor can possibly start from zero and get up to speed to be able to treat you. However, they could be a good PCP support in some ways as they learn.
-
My PCP has a VERY basic understanding of Lyme. He watched an ILADS video.
He doesn't agree with long-term antibiotics, but the fact that he has the most basic grasp of this disease has allowed me to get needed help from him...ex. he signed the order for me to have home health inject my Bicillin, etc. since my state won't take out of state orders.
While at my last visit, I said "Dr * (the LLMD) has a philosophy like yours (intentional ego boost), he doesn't think the only problem is pure Lyme, he has a 15 point differential that he goes after one by one."
Then a week later, I emailed his office the video of Dr. *'s lecture about the MCIDS model.
Burrascano - March 21, 2012 lecture - scroll all the way down -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Keebler,
No, it was a conference in March or April at a college that starts with an S (I can't remember the name). Dr H NY spoke mid-way through and mentioned the 15 point differential.
My Dr runs her own show so to speak. She still has to follow "guidelines" though.. She understands my insurance dilemma too. She doesn't seem to mind ordering tests so far for me. That has been a blessing.
I did give her the Burrascano guide on thumbdrive.. I told her I knew it was alot, but it was a 'good read' if she could take the time. I was able to discuss with her my reasons for persuing this theory of testing.
She is not ego-driven. I will try the printout for the ILADS conference.
She was not able to take the time at in the week I gave it to her and saw her again yesterday. I have a feeling if my AdvLab comes back positive, she will take notice.
I really like the idea of a smidge at a time. I took on my 2nd appt the AdvLab info (bc I had my agenda) She was open to ordering it for me.
Thanks Keebler for all the links.. Need to study. :-) Have to look into this "Cure Unknown" thing too.
Map1131 is absolutely right. I'm trying to do all I can preliminarily to keep under the insurance wing.. I stretched it yesterday by ordering the AdvLab thing. It is very stressful for my honey and me.
My gameplan is to 1. be more certain of diagnosis, not just for my sake, but for my honey and my Dr 2. Then, I will see LLMD, hope it's not a whole mess o' co's to deal with. 3. Try to get my LLMD to work with my PCP to carry out as much as possible under insurance umbrella.
Does that sound reasonable or am I just a dreamin?
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
posted
See how far I've come in just six weeks? All thanks to all of YOU !!! Undiagnosed or not, I've found great comfort here with a group that understands my symptoms and offers real evidence of why's and wherefore's of digging up the truth. THANK you all.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
posted
nnecker: I don't understand what the point of the articles you cited is. Can you help me on thisA I am already aware of the extreme controversy over the differing camps about Lyme. My thought process is that I my PCP is better educated on the controversy, that she might be objective to offer her opinion whyss and why nots on both sides. Unfortunately, this controversy is of high stress levels in my own home. Being sick with all the puzzlepiece-fitting symptoms and having ruled out everything else, i do not know what other path to chase.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
Reserved book at library for pickup "Cure Unknown" took a sneak peek at it on Amazon.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not sure which lab you are using.
Was the blood drawn TODAY (Thursday)?
Was it shipped overnight express so they get it Friday?
Was it processed exactly as the lab directed and shipped the way they suggest, too?
If so, it likely won't arrive at the lab until next week. Even if they get it on Friday, they may not be able to work with it until next week.
You'll need to find out if this delay will put the test in jeopardy. It can. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
They must be shipped today FEDEx overnight, according to instr. The Dr ofc, the Lab contact person and I all worked together on the logistics.
Thanks.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
posted
I rec'd a couple of pdf files with some good info via email from AdvLab that is not on the usual website page. I was hoping to get an answer how to publicize the info for all to see.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
posted
I'm not promoting them. They don't do co-infections. The staff are pretty great answering Qs.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- KentuckyWoman,
Since some labs do not allow new samples to arrive after Wednesday, for SOME tests, it's just good to have that assurance with your tests that all should be just fine.
While maybe not the exact pdf to which you refer - and further detail can come from them to anyone who inquires.
For a basic start, included here are a couple links for
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lymeboy
Unregistered
posted
For me, I wouldn't even bother. Many PCP's are egomaniacs, and even many more are just pushing whatever their drug reps ram down their throats.
I have gotten a few PCPs to meet me halfway, before I Started with a serious LLMD, but halfway was not nearly enough. Lyme needs 200% and more to get well.
IP: Logged |
I am just trying to warn you that there are a lot of snake oil salesmen out there who will take advantage of you.Just use your best judgement and look at the solid scientific evidence that is out there.
What are you going to do if that AL test comes back negative which I predict it will?Are you going to believe it?
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is no test that can prove the absence of lyme. That is why a clinical evaluation is so very important, along with tests that are to help guide one's LLMD.
Lyme is never to be diagnosed by test alone. It is a clinical diagnosis, calling upon the experience and wisdom of a doctor who is very much lyme literate, as are those who are ILADS-aware.
Next weekend is the ILADS annual conference. Many sessions will be live video cast for free. Check it out: www.ilads.org to learn more. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As not everything is lyme, many infections also go along with lyme, and it can be hard to distinguish among them, detail here that can help to sort it all out.
Also, how to interpret certain tests, aspects to consider regarding clinical assessment and, most importantly, why the expertise of a LLMD matters the most:
Lyme is usually never "just" lyme. It's very complex. A good LLMD knows that and knows how to sort it all out.
I have thought of this.. My husband asked the same question. We are not seeing eye-to-eye on this anymore. I did the CD-57 (free) and WB (free) to "peek" into the idea so to speak.
I thought I was getting the AdvLab test done to get a much better picture. He's not crazy about me seeing an LLMD, so I thought the test would sway him. It's a step to see before I submit my body to heavy antibiotics.
He asked me what I'd do if the test was neg. I said I would probably start antibiotics and try to stimulate a "CDC approved" diagnosis. :-/
As many on this forum have already said, "nothing is SURE." or something close to that anyway.
I'm VERY OPEN for advice obviously. :-)
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
posted
I would not trust a clinical assessment by a LLMD either.They are all over the map too.
Case in point,look at member C.P.'s statement from thread "Which Dr do I Believe" where she saw two of the best LLMD's in the country:
"These two Dr's which I have already seen,have different opinions about my health and my treatment.I'll see what DR N(a third doctor)says next week and then analyze all three before making a choice."
Trust the clinical assessment?I think not.As far as an ILADS educated Dr goes,I would not trust them either.Their are to many conflicts of interest.
Nick Harris, ceo of Igenex,also on the board of directors of the ILADS.Nick Harris states:Patients,because of the internet have become my best salesmen.
DR H,founding member of the ILADS and president of the ILADS Educational Foundation.
He is on the board of directors of Xymogen a supplement producer which provides many products that are on the ILADS,s treatment guidelines.
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
KentuckyWoman,
Are you on a waiting list for an LLMD? It takes months and months and months to get in.
If I did the Advanced Labs test, it would be a waste of money, because I don't have pure Lyme, I have MCIDS...like most of us on this board. That's why Lyme and co are so hard to treat.
I have a bazillion co-infections, thyroid issues, high lead levels, genetic issues with detox, viruses, etc, etc.
Your PCP will not be able to get you well. That is why many of us are broke beyond belief trying to get our lives back.
posted
I have an actual appointment in November with an LLMD recommended to me.
I had the basic AdvLab test done. My only real evidence of my suspicions for lyme is my CD57 count is low (54)and I have one positive WB test band (P23). ALL my symptoms fit.
I am recognizing a 4wk cycle to hightened symptoms now that I am better educated on that. I got very sick, very fast, and very severely in Feb 2010. From April-July, I looked like the swimmer in the UOS documentary. I was invalid.
In the very beginning it felt like flu. I have been telling my Drs from day one I felt like I've had some sort of infection.
1st Neurologist tried to put my on "Migrain" medication. I do not have a history of migraines. I balked bc I'm so sensitive to meds and the standard meds with standard reactions do NOT react on me "normally."
I very reluctantly agreed to a 1/2 dose of Cymbalta.. a "migraine" med. I say that bc it's really a med for depression which I also stated to them I was not unhappy, depressed or anything. It hospitalized me with sever convulsions.
When ER Dr wanted to give me Adavan, I refused ANYTHING. Demanded to be sent to another hospital. I was so severyly light/sound/smell sensitive that I'm yelling at him from under the hospital blanket. I even fussed at one ER Dr bc he reaked of cigarrette smoke.. I told him "shame on you!"
I have since refused ANY medication of any kind until I have answers. 2nd Neuro NP readjusted my vitamin supplements last summer. Not until this year she added B12 injections have I felt more energy to function betw symptoms.
ANNND, she's forgotten why she started telling you all of this. ... processing... that's what I say when my brain stops flowing right.. I think I was answering nneck something about evidences.
Nnecker, are you a Dr? I'm curious bc you strike me as an advocate against LLMD clinical diagnosing altogther. Please correct me. I DO want input.
I am lost in a firestorm of "educated" Drs on every side who do not agree with each other concerning my diag/treatment. And I am talking about OUTSIDE the Lyme literate community. My Neurologists do not agree with the Shrink they sent me to. My PCP does not know what to think now concerning Neurol/ or Lyme. She disagrees with my OB/Gyn who declared me NOT in perimenopause.
At some point, I have to return to my gut instincts and tell them all, "forget you." I will have to decide something for myself. KW
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I'm sure you will find a lot of validation when you see your LLMD. You will realize that, unfortunately, the mainstream medical system has failed us.
Many LLMD's test you for everything under the sun, not only Lyme. Mine took 40 vials of blood and found that I was very sick, when all the other Drs said my labs were "normal" and it was all in my head.
posted
Thanks lax mom.. validation is exactly what I am CRAVING right now. I keep telling myself, "just get through this stage.. patience..." Patience is not my strong suit. ;-/
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| 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