First, let me send wishes for wellness and health to everyone. As you might see from some of my previous posts, I was one of those Hot Messes that chronic Lyme built.
Although I still have far to go in rebuilding my life, I am grateful that I am..... well. At least well enough to think, type, and form sentences that make sense ---- a far cry from my Bad Old Days when I could barely take care of myself.
I know it's been said before, but it bears repeating: Lyme is not for the faint of heart. It never ceases to amaze me how one condition, one little tick bite, can cause so much pain and loss ---- in every part of one's life.
We all deserve medals for bravery in dealing with Lyme day by day!
Anyway, lately I've been hearing from many individuals dealing with Lyme Disease that one of their biggest problems is dealing with their doctors.
Even though they have an LLMD, it seems that maybe the doc is not communicative enough (everything from not clueing them in on lab results to exactly what conditions / coinfections they've diagnosed),
to feelings that the doc is distant, seems cold or unconcerned, doesn't answer their questions,
or just feeling they are not having a good physician-patient relationship.
Now, I will certainly admit I am no authority on anything and cannot speak for anyone else (or get inside their heads), but as a former nurse and lab scientist, I have spent much of my career working with physicians.
And I will admit I was fortunate to no end in having the LLMD that I did: excellent diagnostician, caring manner, and made me feel that anything I asked or had a problem with was worth an answer.
That, I believe played a HUGE part in my progress!
First, let me say that I have known docs of all types: the caring ones with great bedside manner, the jerks with zero personality who were outstanding physicians, and the ones that struggle with the demands of being a physician.
WHY ARE SOME DOCS THE WAY THEY ARE?
1. Physicians (and medical people in general) often learn early in their careers that it is imperative to their own emotional health as well as their ability to work well to distance themselves from their patients.
It's not personal.
Some docs are thinkers ("hmmm.... this symptom plus that lab result plus this exam result most likely is pointing to this...." you can often hear the wheel turning in their heads!),
some are observers (even the way you sit is telling them something important),
some are great at both and are more than willing to talk to the patient about just about everything as they go along.
It mostly has to do with the way that the physician has found to best deal with his work.
Again, it's not personal.
2. Physicians are under constant stress of wondering if THIS patient will be the one who sues them.
In the case of LLMDs, with the Lyme politics still out there threatening their licenses, they have to keep their eyes on everything and everyone. Even fellow physicians.
3. Virtually every physician is working 24/7 in some way with patient load, practice issues, hospital care, after hours calls, etc.
And their office visit time directly affects waiting patients.
So some try to "make it quick" and others who sit beyond appointment time with a patient will face the next few patients angry and upset at having to sit in the waiting room too long.
We with Lyme often have so many symptoms, problems, issues, etc that a 15 minute visit is just not sufficient.
4. Lack of progress. As in the above last paragraph, we with Lyme can be a Hot Mess of serious symptoms. And we all want to get better NOW, faster!
Of course ---- who wants to deal with being this sick for weeks, months, or years on end?
It is frustrating to not only us and our loved ones, but to the physician as well.
It is hard to keep telling a patient that they have to be (pardon the pun)............ patient.
OK, SO THOSE ARE SOME REASONS & EXCUSES, BUT MY LLMD IS A PAIN:
Well, I think I've kept us all long enough on this post, so I will try to make a suggestion list here that may be helpful:
1. QUESTIONS:
If you have questions for your doc, write them down. Take them to your visit and tell the physician you have some questions that you need to have answered so you know what you're dealing with. After all, YOU are the one going home with the illness.
If the doc brushes it off or doesn't seem to have the time, offer to leave the list with him/her along with your phone # or email addy.
Tell the doc that you understand they are swamped for time and say that when they get a moment they can call you or email you the answers.
Another possibility is to schedule a Discussion Visit, if you can afford it. It may be some time before or after patient hours.
But be sure to tell the scheduling person that you want to come in to talk to the physician, not for an actual exam or treatment --- they have to schedule this properly and code it properly for billing purposes.
2. MY MEDICAL INFO:
As the patient, you have the legal right to the information in your medical record. You do not necessarily have the right to the actual record itself.
You have the right to copies of you test results, lab reports, even parts of your chart.
ASK!!!!
All I told my LLMD was that I was sick and tired after 13 years of so many docs and so many misdiagnoses and so much crap that I just wanted to have proof in my hands that I had LYME!
He said, "absolutely! you deserve it!" and the office made me copies of all my results and part of his physician's notes to take home.
If your physician refuses to allow you to have them (and I do not see why, they know about this), you can still call the labs, facilities, etc where you tests were done and get a report copy for yourself.
Once a report is sent to the physician for review, the facility can release a copy to the patient. It may or may not be free (ask).
3. MY DOC DOESN'T TALK TO ME:
This is a hard one to comment on, but some docs do wonder just how much they should tell the patient at any given time, how much info is actually accurate at the time.
Some docs are pressed for time.
And again, some docs are jerks with zero personality.
My best suggestion is to never just clam up just because you feel that the doc is being cold to you.
Being respectful is a good approach (doctors like respect; fake it if necessary. Nurses do it all the time!).
Cut the ice with something like, "I trust your judgement here. I need to know what we can do to get myself healthier. What should we do next?"
My LLMD made me feel like we were partners in my care. I know, not every doc will be that way, but it's a good idea to try to at least steer them in that direction.
4. I HATE MY DOC & I THINK I NEED TO FIND A NEW ONE:
That may be.
What I tell people is, ask yourself if you are getting better. Is the treatment you are getting helping in any way?
Now obviously, if you feel you are actually being given substandard care, that your doc really never communicates with you, treats you like garbage or hurts you in any way, or if you think you're actually in danger with this doc, by all means ---- start looking! And don't look back!
On the other hand, many times when we are very sick (as many of us are), emotionally we hurt as well. We want kindness, we want soothing, we want a hand on the shoulder and "it'll be okay ---- don't give up! I'm here to help you."
Problem is, we can't realistically expect that from our physician.
Sometimes we are in so much pain, physically and emotionally that we......... don't handle other people the way we would if we felt better.
Whe we are very sick, we take every moment of silence, every look of the eyes, every lack of smile, to heart ---- and we react with frustration, sadness, anger, etc.
Now, some are more outwardly compassionate than others. But often, hey ---- they're just doctors, and not like the ones on TV.
You will never change your doc's personality or the way they handle things. What you can do is try to be open, respectful, and trust your gut.
And sometimes, you may find that you trade in your doc for a doc with a whole other set of issues that are bothersome in some other way!
Well, I hope that someone out there may find some of this useful in some way!
Take care, Mari
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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FTI the leaders of the apc (American College of Physicians) are apparently in the IDSA camp. Here is one of their Lyme links. Note the "Post Lyme" syndrome. They also look to the CDC for insights.
posted
Hey Neil, TinCup, dbpei & everyone! Glad to hear from you too!!!!
Having been through the Hot Mess (sorry, I just like the term) of physicians that did me in for gee, at least 13 years (an assumptive figure),
yes, it is a good idea to caution those with Lyme or suspected Lyme to be aware that many physicians who are "outside" of the ILADS group,
be they internists, general practitioners, family medicine, OB/GYN, neurologists, whatever,
that there is a very good chance that the doctor you are seeing has been educated by IDSA /CDC guidelines.
Bad for Lyme, bad for us!
If I may digress: I WISH ALL OF THIS NONSENSE WOULD FINALLY JUST STOP AND PHYSICIANS WOULD RETURN TO PRACTICING THE ART OF LISTENING TO THEIR PATIENTS!
But here's the issue:
Physicians are basically educated by their professional organizations, seminars, continuing education getaways, published papers, and of course the pharmaceutical detail reps that leave the nice pens and coffee mugs at the offices:
Did you think they take home the PDR drug books and memorize them?
Did you know that the majority of physician continuing education seminars and workshops are basically endorsed or given by corporations who are "bringing their products" to the doctors' attention?
And how about those medical inservices that are held in facilities where the attendance is actually optional, but there's great golfing or tennis?
Like today's medicine in the US, Physician Education is a business. And, it's highly political.
Doctors are also keenly aware of what colleagues are under scrutiny, who is being sued for malpractice or negligence,
(on that note, check out the careers of Lyme pioneers Drs. Burrascano, Jemsek, Jones, Drulle, to name a few)
and who may be considered a "rogue" in diagnosing / treating Lyme Disease.
Hey --- my own family doctor, who I knew since I was 16 and virtually mentored me all through nursing school
was the one who did my first Lyme labs (after 5 years of getting progressive sicker), gave me the 3 weeks of doxy,
then repeated the blood test (and me, too sick to remember that odds are it will come back negative after the course of abx!), and when it came back negative (told ya)
promptly told me "you don't have Lyme; you never had it!" and walked away from me in his office hallway!
And I was too sick to know at the time that he knew his NJ was license was on the line if he "over reported Lyme Disease".
What I had to do was make peace with all of this, all of the physicians who thought they knew what they were doing because that's what they were taught and led to believe.
I had to forgive them.
And now I have to see things in the medical aspects of Lyme Disease and try to somehow help people with info, if I can.
And as Neil has pointed out, physicians in general are leaving us in huge numbers.
Can you blame some of them? Overscheduling patients to try to get as much reimbursement as they can from insurance,
the threat of lawsuits, from virtually any patient,
lousy reimbursement from some insurance carriers (unless they're a cash majority practice, medicine is the only career where you can be paid --- seriously --- $2.38 for a procedure),
and malpractice premiums that are out the window.
And again, the majority of docs are on call 24/7.
Even surgeons, who are in the higher income brackets, have to have a strong backbone to deal with the day-to-day.
Finally, in the US, medical school enrollments are down significantly --- both due to fears of huge student loan debt as well as the "fear factor" of again, patient lawsuits.
It just does not make for "happy happy doctors" out there.
Finding a physician who is capable of diagnosing and treating Lyme adequately is, sadly, a hope and a prayer for many patients who are out there suffering.
Mar
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
(What ILADS is) . . . WHY you need an ILADS "educated" or "minded" Lyme Literate Doctor who understands chronic infection - - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SOME doctors are brilliant and also excellent in all matters that matter.
I just want to add that after reading today's news about a woman who was able to survive a very serious brain injury.
It's important to put my assessment of doctors in perspective: regarding MY life, I've had terrible doctors who failed to even consider and then were either unable or unwilling to deal with lyme and other tick-borne infections and the results of those.
Still, there are many good doctors who do successfully work with those who have lyme.
And there are also some very good doctors in other areas of medicine. I just wanted to add that.
It's just that for those of us here regarding lyme - many of us found the really bad doctors long before we were able to find the good ones -- and many still cannot find or afford a proper LLMD or LL ND.
For those (myself included), I want to thank those who developed the world wide web and those who write and share their knowledge so that we can learn all we can for how to best manage all this whether or not we are left on our own for such a task.
The internet has saved my life by sharing knowledge. Not yet in remission but I'd be long gone had I not even been able to learn what I have so far. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Keebler, I hope this Lyme treatment nightmare ends soon so that you can get the proper help.
You are so good. You help others in every way you can, and still good professional treatment for you and so many of us is out of reach.
But, who knows. I've never believed that this disease had to be treated by a doctor.
Many do well on herbal protocals and even get well. Still, that can be expensive, too.
Sounds like you are making progress.
May we all find healing.
Posts: 1358 | From Midwest | Registered: Apr 2009
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
I have a friend who has had Lyme and was in remission until another tick bite.
She used only natural, herbal supplements and has recovered.
Posts: 2247 | From USA | Registered: Aug 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I'm so glad to hear this MannaMe.
It happens. Did she follow something like Buhner's protocal or Cowden, or did she pick her own herbs and do it by herself?
Posts: 1358 | From Midwest | Registered: Apr 2009
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