Author Topic: HIV doc is mad at me for asking for my records to sent to HIV doc in Belgium. (Read 5736 times)

Dan J. · « **on:** January 22, 2007, 04:44:14 pm »

I talked to Herman today. the doc in Gent, Belgium is going to run a geneotype test on the blood she drew on Jan 3rd. She asked Herman to have me send her my records from my HIV doc here in Jackson, that she needs my drug history. I called this AM, talked to the nurse. She said she would have the info ready for me this afternoon. 30 minutes later the doc called wanting to know why I am sending my records to another doctor in another country. I told him that I felt a second opinion is needed on my current course of treatment. I NEVER miss a dose, but I am not undetectable. He didn't seem to like this idea much. I told him that the Dr. in Belgium only wants to help to get me undetectable again & that she was very adament about not "stepping on my U.S. docs toes". I guess I stepped on them instead....

I am currently taking 2 Invirase 500 MG 2X a day and 2 Kaletra 200 MG/50 MG 2X a day. Doc in Belgium feels I need to be on a third med, but the doc here thinks that taking 2 meds is fine. How can it be fine if this current combo isn't keeping me undetectable?

Moody doctors, Sheesh!

Dan J.

Jeffreyj · « **Reply #1 on:** January 22, 2007, 04:49:04 pm »

dAN
tHOSE ARE YOUR RECORDS AND YOU ARE FREE TO DO WITH THEM WHATEVER YOU WANT. sCREW YOUR dr IF HE DOESN,T LIKE IT. yOU ARE DOING THE RIGHT THING, AFTER ALL YOU ARE NOT UNDETECTIBLE.
gOOD LUCK!
jEFF

ACinKC · « **Reply #2 on:** January 22, 2007, 04:58:06 pm »

Capitalization aside... Jeffrey is right.

Miss Philicia · « **Reply #3 on:** January 22, 2007, 05:13:09 pm »

I agree that ultimately they are YOUR records, but why didn't you simply disclose to your doctor in advance that you were going to do this instead of making it a surprise through his receptionist? He would have been remiss not to get on the phone and ask if there was anything he should know. Why do you need another doctor in a foreign country to "run" a genotype? Isn't one already done on you? Wouldn't you just send the genotype already run?

Nobody here can evaluate your medications with the paucity of information you just gave, ie. no resistance information. I was highly resistant to PI's and on Invirase and Kaletra and I had to just settle for a ~20,000 vl for quite some time until Prezista and Fuzeon were available. Off the top of my head I was on FOUR things when on Invirase and Keletra, and I know one was Truvada because I'm still on that, so just from my own experience yes it's odd you're not on more things. But without more information nobody can say much.

newt · « **Reply #4 on:** January 22, 2007, 05:33:36 pm »

You are, in a perfectly valid kind of way, saying yr doc's approach ain;t up to scratch

You do wanna drop a few more virons off your count so a 2nd opinion seems a good idea. If I were in your shoes I would be pushing for this, and therefore 3rd or a different drug. Given your history of allergies/kidney cock-ups + adherence issues this does need some care. Indeed, if I were your doc I would be looking to make a referral, since undetectable is the target and it ain't in the bag yet, and therefore I would be worrying I'd get sued. Alas, I ain't your doc and it's not my ego that's being trod on.

Nonetheless, I would go for a 2nd opinion.

I hope Jackson doc calms down and sees the value in collaborating internationally. You might bribe him by permitting him to write your case up for publication.

- matt

poet · « **Reply #5 on:** January 22, 2007, 05:35:11 pm »

Dan, it's always complicated, working with doctors, the doctor/patient relationship or, at it's best, partnership. I would agree with Philly, that while your records are your records, the first step would have been (IF it hasn't been already) to press for a genotype done in the U.S., to press for the 2 versus 3 medications (or at least get a clearer statement which could be posted here). If you can't establish a working relationship with your current doctor, even if it means an agree to disagree (as I often have when I push for more time between labs) then it might be time to rethink who is providing your healthcare at home, since, if an emergency cropped up, it's your doctor here, not in Belgium, who would matter, including which hospital he or she has admittance to. Win

Dan J. · « **Reply #6 on:** January 22, 2007, 06:00:06 pm »

I can't take Truvada, makes my liver enzymes go through the roof. Can not take Prezista because it has Sulpha in it. ( I am allergic to all sulpha based drugs.) Had allergic reactions to Ziagen, Sustiva. Jaundice with Reyatazz. Had PN with Zerit. That is all the info I have with me until I get the medical records from the doc in Jackson. My doc here has told me several times that he can't do a geneotype with a viral load of less than 1000 copies. The doc in Belgium told me they have a new test they just started using that they can do a geneotype on 50 copies.

Dan J.

wishihadacat · « **Reply #7 on:** January 22, 2007, 07:31:00 pm »

I've been with the same doc in Chelsea for 19 yrs, and he has kept me healthy. If I recall correctly, he obtained a genotype even though at the time I was (and still am!) >200, and possibly >50, depending on when the test was done. I could be wrong, though. I'd leave his name, but I wouldn't want it get around that he has treated a straight guy. Hah!

ademas · « **Reply #8 on:** January 22, 2007, 08:15:28 pm »

Wow...I didn't read the other replies, but who's working for whom here?

I would ask for copies of my records without any explanation, and if my doctor called, I would likely tell him they were for me, or that it was none of his business.

I like my ID doctor a lot, but sheesh...he ain't god. I shop around for cars. I shop around for mechanics. If I want a second opinion about my health, it's really none of his business.

Nothing personal, Doc, but get over yourself !!

Miss Philicia · « **Reply #9 on:** January 22, 2007, 08:24:22 pm »

He wasn't just asking for copies, he was asking for them to be transmitted by their office. It's just a polite consideration, it's not an issue of deifying one's doctor. If the relationship is indeed a partnership a little common courtesy is not asking much.

If I had explained what I was doing to my doctor and THEN they'd thrown a fit I'd have problem making a decision on what to do next.

poet · « **Reply #10 on:** January 23, 2007, 05:34:19 am »

Thanks, Dan, for further information: 'That is all the info I have with me until I get the medical records from the doc in Jackson. My doc here has told me several times that he can't do a geneotype with a viral load of less than 1000 copies. The doc in Belgium told me they have a new test they just started using that they can do a geneotype on 50 copies.'

You probably posted this earlier, but with it in front of me, I would have, politely, said that you need a genotype done because of your medication problem and if he can't get it done in the U.S., you have found somewhere where it can get done, but that they need the related records as well. If he had a fit about that approach, I would change doctors (if possible). The other angle is your doctor's frustration. Doctors do the work that they do to help. A patient, such as you, who presents a more challenging medical picture can frustrate a doctor in a good way (as my heart doctor was frustrated in NYC that hiv meds. made choleterol lowering drugs worthless). Sorry that I didn't have the fuller picture when I posted earlier. Best, Win

heartforyou · « **Reply #11 on:** January 23, 2007, 11:35:49 am »

My doc in Belgium is only trying to help.
She has almost everyone of her 350 patients on undetectable, so it means her treatment works.

Dan has had the chance to come and see me , and my clinic offered him a free bloodtest in order to have some material to check on.
The first reason was that Dan's clinic only did tests >400 and mine does >50 copies test. SO, why not have a closer look.
Secondly, my doc just popped the question why Dan was taking only these two drugs without a third one. In our clinic Dan's combo always has a third drug in it.
Now they offered to do a genotype as they just patented that some weeks ago for patients < 50 copies.

It always comes to one point : get yourself undetectable. And if that can be done with the help of another doc or clinic it serves the patient's and the doctor's goal : go for the best.

Rest assured, my doc doesn't want to judge or question Dan's doc. She just wants to help and that is what she would appreciate with a difficult case herself.

You hang in there Danny boy....You will make it

Love you

Herman

Life · « **Reply #12 on:** January 23, 2007, 11:48:17 am »

Dan as others have said.... <50 is your goal and 3 is better than 2. Infact its sorta like IMPORTANT! If your doc has trouble delivering his side of the agreement, shit I would be looking elsewhere to... When it comes down to it, hurt feelings really dont mean shit.... Living longer is way cooler...

Love,

Cliff · « **Reply #13 on:** January 23, 2007, 12:03:11 pm »

I agree with the others that a second opinion is perfectly fine. I'm not so sure I believe that this is best acomplished by a doctor in Belgium. You may (actually will) need other tests and it may become an issue trying to get these tests done by a doctor/lab thousands of miles away.

The doctor should set his ego aside, but it may be best to work with him to figure out an appropriate approach to your concerns or find a new doctor in your area if he is unwilling or unable to assist you. I see using Herman's doctor as a temporary fix, at best.

Coffeechick88 · « **Reply #14 on:** January 24, 2007, 12:59:48 am »

The only problem I potentially see is that this doctor is in Belgium, so it may be difficult due to logistics and the possibility of office visits, other labs, etc. In the end, the doctor that will be most beneficial is one closest to home. Anyway, it is your health--that matters more than your doctor's ego. Your doctor is just feeling his ego being stepped on--it is very common with doctors to have ego issues (I work with enough of them to know this), but he also probably knows or should know he doesn't have all the answers. A second set of eyes looking at your case can give a new perspective and she can be very helpful to this case. It would be ideal if those two can work as a team on a this case to where they can help each other help the patient. If not, maybe it might be time to switch doctors--the doctor is working for you, he/she should be willing to put aside the ego to do what is best for you, the patient.

blondbeauty · « **Reply #15 on:** January 24, 2007, 01:59:06 pm »

If my father had not gone for a second opinion after his cancer diagnosis he would be dead today. The main purpose of a Dr. is to try to keep ots patients healthy. A good Dr. that does not know what to do in a certain case should send you to a coleague that can give you a better treatment.
I can´t believe you were in a duotherapy in the XXI century. Lets see how does the treatment of Herman´s Dr work on you and keep us posted.

Strayboy74 · « **Reply #16 on:** January 26, 2007, 05:15:52 pm »

Quote from: Dan J. on January 22, 2007, 04:44:14 pm

Moody doctors, Sheesh!

Dan J.

It seems your doctor puts his ego above your health. It may be acceptable to him, but ask yourself, is it acceptable to you?

hrm.

-joseph

pozniceguy · « **Reply #17 on:** January 26, 2007, 05:48:22 pm »

I agree getting a second opinion is a great idea...especially if your current treatment is not to your satisfaction...but I have been told on several occasions that the Dr's records are HIS...not YOURS...... you have no actual right to them..most Dr offices will of course share info but are very reluctant to release records...they frequently contain notes by Dr that he /she may or maynot want to share.....After I encountered this type of resistance a few years ago I have made a routine of asking for a copy of all tests, Xrays, CAT scans and any other pertinent info I can get from the nurses or aides when I am in the office for an appointment....I haven't been turned down in years,,,,,I have my own "set" of records....
My Dr is very proactive....he readily refers me to specialists whenever there is a question that he feels needs a second opinion.. I wouldn't trade him for anyone...he answers questions..never put me off no matter what the question..I haven't needed to use my set of records but I like having them just in case .....

Miss Philicia · « **Reply #18 on:** January 26, 2007, 05:55:55 pm »

link

Ownership

In the United States, the data contained within the medical record belongs to the patient, whereas the physical form the data takes belongs to the entity responsible for maintaining the record. Therefore, patients have the right to ensure that the information contained in their record is accurate. Patients can petition their health care provider to remedy factually incorrect information in their records.

In the United Kingdom, the NHS's medical records belong to the Department of Health.

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Author Topic: HIV doc is mad at me for asking for my records to sent to HIV doc in Belgium. (Read 5736 times)

Dan J.

Dan J.