I'm worried that I should fire my PCP, but I'm also worried that Lyme Rage/Overemotion may be hindering my vision. So, dear friends, I would love your opinions on this situation. Maybe I just need to rant and let it go...
I found my current PCP two years ago when I got really sick this time around. I was unhappy with my then-PCP, who kept telling all I had was IBS and was hard to get hold of, so I was delighted with new doc, an internist, was wiling to look harder for what was wrong with me.
My new PCP spent a couple of months running tests, determining in the end that I had Fibromyalgia. At the time, I was thrilled to have a diagnosis, which among other things meant I was more likely to get my private disability benefits.
My PCP was great, helping me get second opinions from five different experts, getting me letters, reports, and forms for the disability and eventually SSDI whenever I needed them.
The best thing about her was and is that, even though none of her Western medical treatments worked for me, she encouraged me to seek alternative health care, which she knew can be very helpful for FMS.
She is also becoming more of an expert in nutrition and using diet to help stop inflammatory disease processes. She managed to get me a free two month supply of an expensive anti-inflammatory supplement that she wants me to try out to see if it helps me.
A year and a half ago, I asked her about Lyme disease. I was too sick to follow up with the tiny bit of research I'd done, so I went with her knowledge of Lyme, even though I kind of knew she was off the mark. She ran an EIA titer (instead of an Elissa) for Lyme, which came back negative. She was certain that meant I could not have Lyme Disease.
Last December, I read Amy Tan's essay on Lyme, and knew this was what I had. With the help of this board I found a good LLMD. She gave me an immediate clinical diagnosis of Lyme and Babs, and I tested CDC and IGENIX positive on my Western Blot and for Babs.
When I asked her, my PCP said she was open to me pursuing Lyme diagnosis and treatment, that if she were me she would do the same thing, and that she would support my treatment locally when needed since my LLMD is out of state, even though it is clearly not her expertise.
I am in the process of getting treatment, which has been stalled because it looks like I have an ulcer, which must be treated first, I guess.
I met with her today, and while she says most of the right things, things don't feel right to me. She seemed uncomfortable with the Lyme info I shared with her, and told me when I asked that she had not read any of the Lyme info I've sent her since December (a few medical articles from ILADS and a couple other good sources).
When I asked her about her hesitancy, she said that while she supported my search down this path, she was worried that I might get taken advantage of by doctors who order "a lot of unnecessary, expensive tests and treatments," and that she worries that I might be wasting my money.
In the end, though, and I pressed her on this, she insisted that she absolutely supported me, that I should keep going, and that she looks forward to seeing if treatment ultimately helps me.
I suspect my real problem is that I don't really trust her. She says she supports this path, but she displayed no enthusiasm at all for my treatment or my discoveries. She has not put any time into study of this issue, and has never said anything about her missing the diagnosis of Lyme.
She did spend a long time today telling me about how impossible it is for a general internist to keep up with "all these specialty diseases", especially the ones that are controversial, like this one. She said she wasn't using this as an excuse, but trying to be realistic with her own limitations, and the limitations of modern medicine.
Basically, while she's saying some of the right words and part of her seems curious, I sense her heart is not in it. Also, I'm ticked at her for missing Lyme -- in the first place, even though it may be unreasonable to expect a "normal doc" to have found it.
Finally, she seems to have a sort of conservative and mainstream attitude toward lab tests and treatment in general. I'm pretty sure she disagrees with my LLMDs lab interpretation and treatment for my H.Pylori, the ulcer issues, and my lab high-normal thyroid.
I am so frustrated! I really wanted her to be more excited, I guess, to trust my judgement, and to be more of a cheerleader. Instead, I sense she's holding back, and I feel oogy about it.
Should I just buck up and be grateful for a PCP who knows my history and is open to Lyme at all? Or should I bite the bullet and see if I can find a better PCP, maybe start with a clean slate, find someone who hasn't got this history with me? Are there really any better PCPs out there?
I really don't want to do another doctor search, but I'm worried I won't get past this.
Comments? Suggestions? What should I do?
Confusedly, Elizabeth
Posted by lymesly (Member # 8528) on :
Hi Elizabeth,
I'm kinda tired now, so I hope I'm making sense.
This is the part I'd be worried about:
"When I asked her about her hesitancy, she said that while she supported my search down this path, she was worried that I might get taken advantage of by doctors who order "a lot of unnecessary, expensive tests and treatments," and that she worries that I might be wasting my money."
It sounds like the same old stuff (such as "2 weeks of antibiotics are sufficient"). Is she willing to treat you for a long time?
It would be excellent if you could get a LLMD. Maybe wishful thinking?? I know they are rare. But in this case it sounds like you are going to have to be the one to lead....you know, and hope she doesn't change her mind at some point.
Good luck!
Susan Posted by bettyg (Member # 6147) on :
Elizabeth, I'm going to throw some different things at you from what I read on your post. Be open minded to whatever comes out of my mouth to my fingers, as I never know either! LOL.
Several things are apparent here: 1. your lack of faith in her; 2. your being angry at her for NOT correctly dx you with chronic lyme.
Elizabeth, I was ANGRY with all 40-50 MD/specialists I'd seen for 34 years too before I got my correct chronic lyme dx! I tested for this as I was showing all the signs of early-onset Alzhemer's. I'll take THIS illness vs. AD. My sister-in-law, 40, died of that so I knew all the symptoms only too well.
Then by getting on here, and reading some of the vast amount of NEWBIE LINKS, I read Art Dogherty's 300 illnesses MIMIC LYME disease. No wonder they didn't check with all these LOOKALIKE ones. I'm over my anger now.
But that's why KNOWLEDGE IS POWER! The more we know, the better WE CAN DECIDE OUR LYME TREATMENT includng what we wish to take or NOT take!
"She managed to get me a free two month supply of an expensive anti-inflammatory supplement that she wants me to try out to see if it helps me."
. not a lot of MDs would do that for 2 months.
"that if she were me she would do the same thing, and that she would support my treatment locally when needed since my LLMD is out of state, even though it is clearly not her expertise."
You ARE GOING to need her so don't ruffle to many feathers whether it is refilling meds she ordered, etc.
:told me when I asked that she had not read any of the Lyme info I've sent her since December (a few medical articles from ILADS and a couple other good sources:
That's NOT good! My PCP was the same way. I gave him a lyme packet of info to read & make available to the other MDs in his area. He read the 2 page summary only.
After I was positive to my IGX western blot igm/igg blood tests, he then read EVERYTHING I'd given him earlier. "I was his 1st lyme/chronic lyme patient."
Also, you probably have neuro lyme too; so we are NOT in our right mind, and everything affects us differently than what it would have in the good old days.
My beginner LLMD from 8-04 to 3-06 NEVER did return a phone call or email me of my Feb. 9 MAJOR HERX. No excuse for this type of behavior!
I don't know if ANY of what I was babbling about helped or hurt you; it's just what I thought of as I reread your post paragraph while tryng to answer this.
Give her another change; if she blows it; get rid of her. They have their bad days and things in their HOME lives/family illneses, etc. that we are NOT PRIVY too.
Posted by lou (Member # 81) on :
Finding the kind of PCP you want is as difficult as finding a LLMD, so you need to think carefully about dumping this one.
Just figure out what you want from her, as in primary care, and see if she will do it. If not, then you do have to look elsewhere.
Maybe your LLMD will explain what he/she needs from a PCP, so you will have some guidelines.
If she does not want to read a whole bunch of lyme material, it means she does not have the time or interest to become more informed. If she is not treating you for lyme, maybe it doesn't matter. Of course, you want her to apologize for missing the diagnosis and you want her to be fully informed, take a personal interest in your case, but it doesn't look like that is going to happen.
You will have to play this one by ear, evaluating after each encounter to see if she is really trying to dump YOU or just doesn't want to be pushed into a controversial area in medicine.
Just don't expect too much. Be pragmatic. If you get what you need in primary care, don't look for more. Remember that is what primary care means....they send people to specialists for a lot of conditions, not just lyme. They are not able to learn all these specialties themselves. It is sort of "jack of all trades, master of none" situation.
[ 06. April 2006, 09:18 AM: Message edited by: lou ]
Posted by shazdancer (Member # 1436) on :
I have a PCP who is marginally knowledgeable. Although she doesn't read up on the disease, she was willing to speak to my or my son's LLMD, and when convinced of their logic, she had no trouble with prescribing tests or meds for us, so they were covered under our insurance.
In a way, I can't blame them. All those years of med school, and now all they want to treat is what they're trained to treat, not specialty stuff.
But perhaps you could look into having a Lyme symposium for doctors in your area, and offering continuing education credit to your docs. ILADS would have more information on how to go about that.
Regards, Shaz
Posted by Christine202 (Member # 6158) on :
I've had to switch PCP's numerous time throughout the year....
I have come to the conclusion that PCP's are like quarter backs for your other specialists...
They do not want to get too deep into ANY issue...
I have found that if your PCP truly cares about you and your well being, is willing to support you in your pursuits, even if they think they might not be the best direction, and are also willing to fill scripts that out of state Dr's cannot , then it is a home run...... You want to have someone in your corner nearby...
I think if the PCP is making things hard on you, distrusting you, belittling you or your other specialists then that is the que to find a new one.
I think you will have to go with your gut on this... It seems from reading your post that she is willing to support you even if she is not 100% aggreeable ....
Good Luck !
Posted by Ann-OH (Member # 2020) on :
I am glad people are telling you that it is a good idea to give this doc another chance.
I think she is being pretty honest with you. She is uncomfortable treating a complex disease she had never seen before.
I am so glad she is willing to keep working with you while you see the Lyme doc. Maybe you could get the two to talk to each other on the phone or something to put her mind at ease that you are not being scammed.
I have had two pcp's that worked with me on the basis that they would cover all the day to day stuff and that the doctor who treated me for Lyme disease would handle that part of my life.
I kept her posted on what the Lyme doc and I were doing and educated her about Lyme disease a bit. She was grateful and has caught a couple of cases of early Lyme.
Hang in there for a bit to be sure you have that day-to-day care you need.
Ann - OH
Posted by pab (Member # 904) on :
Elizabeth,
We are pretty much in the same place with our PCP at Woodbury HealthPartners. He basically doesn't support any of our Lyme treatment.
Do you have a LLMD? We go to Dr. C in MO every 8 weeks because Jordan is on IV antibiotics. Dr. C responds to any questions (by phone or fax) very quickly.
We basically use our PCP for routine things - annual physicals, etc.
We do not need a referral to see specialists. I just bypass him and go directly to the specialists.
I would love to find a PCP that would support our Lyme treatment.
Posted by hopeful123 (Member # 3244) on :
Hi elizabeth in mn,
While i agree with most of the replies, it still amounts to, for me, a bigger issue.
Can you trust yourself? I look back on some of my medical choices as really foolish. I, too, waited for someone to read up on material which concerned my health. I waited and waited. Later, I got a little more agressive in pursuing what i wanted and needed.
You can quietly pursue a search for another pcp without burning bridges. you can go check someone out without making them your primary doctor.
Trusting yourself is something very personal and often, very complicated. As an artist, you have to trust yourself. As a patient, your gut tells you alot.
I am assuming the ulcer is being treated by this pcp, so you have something to work on together.
If you can lower expectations and deal with what that will mean for you and your health, then by all means, continue seeing her. But if that's not going to work for you, then slowing move in another direction.
She is not really going to change.
best wishes
Posted by Corgilla (Member # 4066) on :
Hi,
FWIW, I have a local LLMD who told me that I have to have a PCP other than her. She suggested another doctor who treats TBDs in the area who takes my insurance.
Both doctors were dualing on how I should be treated and tested for my TBDs. So, having a PCP who knows a lot about treating TBDs may not be your best bet.
Hope this helps,
Corgilla
Posted by Elizabeth in MN (Member # 8466) on :
Oh, you guys are really a tonic, as my grandma used to say.
Thanks for making me not seem selfish or nuts. I will re-read all your replies carefully, take my time, and work on trusting myself.
I am really grateful for your thoughtful and caring ideas. Thank you!
Warmly, Elizabeth
Posted by bettyg (Member # 6147) on :
Elizabeth,
I just thought of something else. My PCP & I have been together 26 years. He's getting ready to retire in the near future, and I don't look forward to "training a new one" to the level he/I were comfortable and trusted each other!
During my 5 years of hell trying to get SSDI, disability, benefits, he did countless paperwork and letters SUPPORTING my disability claim. Only once did he charge when a letter was sent to former lawyer who quit me.
When I finally WON my disability claim, he commented, "Betty, I'm so GLAD you won as you were wearing me out on all the paperwork for RFC, residual function capacity, etc."!
He wanted me APPROVED and did everything in his MD skills to make this happen for me.
Bettyg
Posted by lucy96734 (Member # 8372) on :
Compared to the PCPs in my insurance network, yours is an angel!
If she isn't actively working against you I would think twice before getting rid of her.
Look at your other options before you put her aside. If she is willing to go along with what your LLMD suggests and not get in the way then I would keep her.
I would give just about anything to have a PCP that would give me the scrips my LLMD wants me to have so I didn't have to pay out of pocket. Or test my liver monthly without a huge argument and an argreement on my part not to tunnel vision myself with "this Lyme talk" and agree to a spinal, more MRIs... just to get him to monitor my liver
You have it better than you know. Make sure you know what the options are before you burn your bridge.
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