Topic: How much info do you reveal to your PCP? UPDATE
penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
I had emailed my LLMD because my ears have been killing me for the past few weeks. My next appt w him is not for another 2 weeks.
I think it is a side effect of my meds but who knows.
He said to stop all meds and get my ears checked and have it reported back to him. The nurse said to see my PCP or if I wanted to come up he can see me but it won't work out for my schedule, etc.
So.. I have to see my PCP - not sure how soon I can get in but maybe a NP on call can check my ears.
How much information do I need to tell them? Do they need to know I see a LLMD and the meds I am on? I did get a CDC positive WB test done (through the rheumatologist he referred me to) but did not followup with him after I got my lyme test results as I knew that I had to find a LLMD, not an ID dr. It is not like he cares, he is a factory sees so many patients a day so maybe he will not even look at my chart and just simply look at my ears. Do you think?
posted
I would think that if you're going to have your ears checked, that would be his primary concern. Especially if he's on a time schedule and has to get people in and out. On the other hand, I wouldn't lie to him either. They are probably going to want to know what drugs you are on and which one's you're allergic to. Posts: 13 | From SC | Registered: Mar 2011
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posted
I'm finding that the new electronic reporting system doctors have to use is a big problem because what one doctor diagnoses follows you to the next. Example: Dr. number 1 diagnoses you with CFS when you report lyme like symptoms and suggest that you may have lyme disease, He/she ignores your suggestion . Dr no. 2 looks at the E record and follows the diagnosis of Dr no 1. (You lose)
I give very little information even when filling out the medical history form they all have because they have the office staff report it to the "Government required Electronic medical records system". This will follow you for life.
I have relitives with my medical history and will give it on an as needed basis and only what is needed.
Posts: 789 | From CT, | Registered: Jun 2006
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Well my PCP does have my positive Western Blot test so if he looks at it and I say I am treating for lyme, he will not question it.
I guess my main fear is if I tell him all the drugs I am on (Babesia also) then will he tell my insurance company and then tell them to stop covering it because it has been over 30 days since the test came back from the labs?
Or will he also ask WHO I am seeing? He will most likely assume I am seeing someone within his hospital network..
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
If you're on zith, I know that can affect your ears but don't remember how.
Do you think you have an ear infection? I'd definitely get to your PCP or an ENT if that's the case.
As for revealing info, I am of the opinion that honesty is the best policy. People with TBI don't have anything to be ashamed of.
The more we try to hide our realities, the less credible we become.
It's time that lyme and coinfections come out of the closet. And that begins with each one of us.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I've stopped mentioning the Lyme to non-Lyme-Literate doctors because I have actually been yelled at by a doctor after mentioning that another doctor suspected that I had Lyme. I really don't like being yelled at by doctors (it's happened more than once)... So if they ask why I'm on abx, I tell them I have a lot of problems with infections, but I don't specify which infections.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I had to go searching for a PC doc who could accept the truth of Lyme, so I can have honest discussions.
Re other doctors, I now bring them brochures. When they start to say there's no Lyme around here, they find themselves holding several brochures. It's up to us to let the doctors know that a stand-down is unacceptable. Then I go out and educate the staff.
Posts: 13116 | From San Francisco | Registered: May 2006
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gmb
Unregistered
posted
penguingirl,
MA is a lyme-friendly state and I don't think your PCP can contact your insurance company to can deny perscriptions, even if you didn't have a CDC positive western blot.
posted
It may be a Lyme friendly state, but my insurance company has aready written me a 'friendly' letter wanting to chat with me, and my Dr. has warned me that the insurance co. will not accept chronic Lyme as a dx. (I am in MA, btw...)
I play stupid with my PC because she IS stupid. Like a bag of rocks. My Immunologist is fantastic and he is the one treating me (or not, depending on what we decide...right now we are not treating per se...)Honestly, 'playing the game' with my PC is the path of east resisitance. Primary Care docs, for the most part, can handle colds and flu, maybe a tad bit of high BP, a little GERD and maybe the occasional ulcer thrown in for good measure. If you have a REAL issue, they are useless.
I know there are exceptions, I used to have a GREAT PC, but she spent too much time with her patients, and they made her go work in the ER...its all about the money.
I find if I go in, play stupid and ask about only NON-Lyme related things, I get farther.
I went to my PC yesterday. I wanted her to increase my thyroid med, even though my TSH(don't get me started about that) was within normal range(barely). She sees I have had a buttload of labs done, am seeing my other Dr and I just payed the game of *oh well we tested for EVERYTHING and we just can't figure it out! I think my thyroid may be a bit off as I have xyz symptoms...* and voila, she upped my dose.
Now, my *real* Dr had chronic lyme scrawled all over my labs. However, in the computer I am simpy osmeone with immune dysfunction. Keeps my insurance co. from denying anything.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
I tell my PCP everything. I report to her after each llmd visit. She has seen me improve, after a very long time on meds, and she has seen me slide back.
I believe if I continue to be open with my PCP she will come to see this is real and then we have one more doctor on our side.
Right now there are at least 9 other patients who go to her because she does the tests and hasn't questioned anyone. I keep spreading the word that she is lyme friendly but not literate at all.
I wish everyone could find someone like her...
Posts: 303 | From green bay, wi | Registered: Mar 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I say answer their questions honestly, but don't throw in any extra information.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Thanks everyone. I am seeing him on Friday so will keep you posted if any drama takes place, haha.
I doubt it though - like I said, it's a factory in there so time is of essence, so I just want to rule out an ear infection.
I have been having really bad scalp pain that I have had here and there before so maybe it is something related to nerves that is affecting my ears.. who knows.
Momofthree - that is great you have an open dialogue with your PCP. Wish all were like her.
I have to admit - it feels nice for a change to not have to worry about taking abx for 2 weeks - I am hoping I don't go backwards but it is nice to not be a prisoner of the medication schedule for once. Like I don't have to worry about staying up late to get in my next shift of probiotics in. I can just take them before dinner or something!
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Ugh - just came back from my PCP. Luckily ears looks ok - no infection but clearly I know I have pain and have been off meds for a few days so I am just confused.
PCP could not find anything. But then he saw my records and saw my WB positive lyme test and said so you have been treating for lyme? I said yes. And he goes, who have been treating you? I go, umm some lyme dr. I said, I tried calling an infectious disease dr right when I got diagnosed but they could not see me for a good 2 months (which is true) and so I found a lyme dr recommended by some people (which is also true). He nodded and asked what meds I was taking.
So I said, Zith/Plaq/Omnicef/Mepron/Artmesia.
He was like wow you are on a lot. (I think to myself, well that maybe but not compared to some people I know from here, haha).
Then he goes, you know with lyme sometimes the ears are affected so I would really want you to see an infectious disease specialist so that you can get this taken care of right away. I laugh and go, what, so that after 30 days he or she can just say I should be all set? He goes, well, it seems like your case is more complex so I am sure they will treat you for more than 30 days. Then he says I want to recommend you see this woman (and I laugh in my head because I did actually call her office back in October but they could not see me until Dec and then I ended up canceling since I found a LLMD to see me sooner, PLUS this ID dr specializes in HIV).
He wrote her number down on a paper towel (wow so professional) and then said call her and I will send her an email now to make sure she can see you right away. Grr.. you know I won't call but it will prob be in the system since my hospital is so electronic now..
Which is fine - but my fear right now is what if I have to see my PCP again in the near future for something else - and he says I noticed you never saw her, why not?
I feel like I need to start from scratch with a new PCP that will just accept that I will not go the conventional route. I don't need a PCP who knows how to treat lyme, but just someone who will accept that I see a LLMD and work with him. I don't know, is that too much to ask? I just don't want a PCP who is a slave to the system and can't think outside the box. It's my body/health so shouldn't I have the right to be treated by anyone I want? Grrr.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Question..why aren't you seeing your LLMD on this.
Maybe it is just me..but my LLMD (who I know you have seen) is also my PCP now. She is a family practitioner and is just as knowledgeable about ears as your PCP is.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
That's why I have a Naturopath as a PCP now...the regular quacks just couldn't deal with how complicated I am. The Naturopaths don't have nearly as much trouble with complicated cases and with people taking charge of their own health.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Bcb - my LLMD is not quite so close by so he wanted me to have someone look at it right away.
Razzle - I might have to find a Naturopath in Boston - I agree - when we are such complicated cases we need someone with an open mind.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
my llmd refuses to do anything but lyme treatment and made that very clear. my question is related to this dilemma. i am seeing an acupuncturist next week (scared to death) for my pain. what do i tell him? (I've never met him.) how can you not tell him why you have the pain?
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Beth - I think you can be honest with your acupuncturist. I saw my physical therapist this week and was very up front with him and said please don't code this treatment as "lyme disease" in case BCBS rejects insurance coverage for PT. He said well your type of plan allows 100 visits in a year regardless of type of injury/illness.. so it was a relief that I could just go into detail why my muscles are so weak, etc.
I would think an acupuncturist is open minded. They are prob used to mainstream medical drs not believing in them (like my BIL neurologist who thinks it is just hoakey to get acupuncture).
Don't do it for the full hour session - I think you have to ease into it. I did acupuncture before years ago for endometriosis pain and it was amazing and was a godsend. I highly recommend it for pain management.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
thank you pg, that's true that you'd expect them to be more open minded. i worry about my records being available to the world (the world of doctors and hospitals and insurance companies) No one knows I have LD except my llmd. have not told my pcp yet.(she gave me the elisa and pronounced me fine.)
so I was thinking I would just be up front and ask him how I should handle it?
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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