Thursday, September 16, 2010

Be your own detective

This is my mantra, ‘be your own detective’. Even if you have a fantastic Dr like I do you have to recognize how limiting a trip o he Dr can be. Usually they give standard 10-15 minute appointments and they see dozens of patients in a day. Just because you are really sick and have been seeing the same Dr for years doesn’t mean you can expect them to remember that a month ago you started taking CoQ10 and you stopped talking the sleeping medication. Of course all this info is right there on the screen in front of them but if you want them to help you then you have to help them!

This illness is a puzzle and chances are you spend way more time thinking about what is wrong with you than your Dr does. I think that if you help them with information then they have the tools to help sort things out, but if you want them to do all the work you will be sick forever. Your choice!

I see my Dr every 2 weeks. I always take a list of questions which are based on research I have done that I think could apply to me. This week it was about coming to the conclusion that I really do have a bad candida problem. I laid out why I thought this was the case and what I though the best approach for me would be. My Dr asked a few questions and agreed with me, he asked more questions and then slightly re-directed my approach. Fantastic result. If I had just gone in and said I feel bloated and blah blah blah he probably wouldn’t have been able to diagnose candida in a 15 minute appointment, but I had had 2 weeks to think about it and try to work it out.

The other thing I always do when I first go in is to quickly refresh his memory about where we are at. This week I said, I had been taking the antibiotics you prescribed 3 weeks ago and this is what happened, blah blah blah. It seems to save a lot of time as opposed to him trying to read back over my chart while I am yapping away at him.

The thing I am planning on doing this week is to lay out all my test results from the last year onto a spread sheet so I can easily see what I have been tested for, what was positive or negative or abnormal. Then I can perhaps see more clearly what other tests I need to get done and also maybe see a pattern of what is going on.

Seems like common sense but for some reason we just tend to leave this stuff in the Dr’s hands and I think it’s a huge mistake … they don’t have the time to put it all together and there is no reason we cant do it ourselves. The internet can give you all the answers if you just bother to have a look.

I have noticed from talking to lots of you and also people on facebook that most people don’t often see a Dr. No wonder most of us never get better!!!

I Know that the big picture is incredibly complex and so getting totally well is unlikely but I also know most of us have multiple infections and sensitivities to things. Surely we can work out why some of these are occurring and fix those specific bits and pieces? That has got to improve things!!

One last thing quickly. Going back to a previous post. My Holter tape results show my heart rate varied between 55 and 200 beats per minutes as a result of POTS. My echocardiogram showed a tiny whole in the mitral valve but nothing to be concerned about. So, regarding the POTS I have a choice of medications I can try but …. I have found something else useful instead. I googled all the medications I was on to see if any of those could be making the POTS worse and what do you know .. one of them was shown to cause a drop in blood pressure when standing. I mentioned this to my Dr and he knew that was the case but had forgotten I was even on that medication because he prescribed it long before I had any POTS issues … See, be your own detective. I have now stopped that medication and the POTS isn’t gone but is significantly improved. YAH!!!!!!!


  1. My experience has been that we have no choice but to be our own detective! wouldn't have advanced in progress if I hadn't done the thinking, research and leading the specialists in the right direction... how ever, it was very difficult at times to get them to listen & do!

  2. Great read again. Fantastic to see a reduction of your POTS. Hope it stays that way. I wish I could go to the DR more frequently, but sadly no Dr near who has the knowledge. I am going to make sure I have a list for my phone consult with Dr D.

  3. lists, summaries...sounds just like me! have said so many times that it feels like you are playing detective with this.

    great to hear that you worked out about that medication and the POTS.

  4. Yeah! I do this too. I recognised a long time ago that it was mad to expect the doctor to remember everything. So I do a little recap and usually take a memory jogging list with me so I don't walk out without the prescription I went for in the first place.

    My doc works part time and has two kids. It pays to remember they are human too!

  5. Great post. Have to say that it does depend on the GP too though. Mine is lovely but comepletey ineffectual. Anything I have got from him (apart from anti-ds) was because I researched and went in and asked for it.

    However, there have been lots of things...tests, alternative approaches, medication which he has flatly refused to consider and he is very resistant to anything I may have found on the WWW. He smiles and nods in all the right places but in the end the answer is always 'no'. Most recently a private doctor recommended that I have B12 injections and she also said that if my GP would not give them to me I could get a prescription from her and ask my GP to ask athe practie nurse how to self-administer. He refused either option and said if I got the injections in some otehr way he wouldn't treat me anymore. I challenged him and asked if this was about his budget and he said no it was because he didn't approve of the other doctor's recommendation.

    Last year I decided to try and change GPs and asked around other people I knew locally ( I know 2 with M.E. and one with Fibro) They had the same experience as I'm stuck with my exisiting GP (who knows me and my family very well) or risk going to someone else who might JUST be a little less resistant yet wan't know my background.

    This situation may be because I live in the countryside with a very conventional and staid community and very few resources for fact none at all.

  6. I'm glad you do such a good job of being your own advocate. I agree that's so important. I also have a lot of empathy for Dr.s who see hundreds of patients each month for 10 or 15 min. We can't expect them to remember us and all our symptoms and concerns. I think that's an important part of getting good care. Being able to see the big picture.

    At the same time, I've found many of the GP's I've seen to be uninterested and dismissive of CFS and CFS patients to begin with. This doesn't help when you want to advocate for yourself. Also, I've had and heard of Dr.'s who want to be the expert and take offence when you research things. I think you're lucky to have a Dr. who takes you seriously. And mostly, I hope it leads to you getting well! I enjoy reading about your progress Lee Lee. Good news on the POTS symptoms. I know those were really disabling you for a while there.

  7. Interesting post. I am one of those culprits that don't see a doctor nearly enough. What with moving elsewhere and reading so many horror stories I just haven't bothered to get round to it. But you've reminded me I need to get my act together if I want to make any progress.

  8. well done for being a super sleuth! I am so happy to hear that your POTS symptoms have eased a little and you even worked out how to make it happen yourself (pat on back!). Hope they will help you with further improvements!
    I have to say that, like the folks above, most doctors i have seen are very closed to the suggestion that there is a gap in their services provided and do not like suggestions/ideas of any kind. I find it very hard to build a relationship with any doctor - they don't seem to want that even - i know they are busy but i would like them to remember at least what condition i have when i go through the door (it is on the screen!) but no. I see a great specialist but i even suspect she has her own motives and interests sometimes for things she does and does not do for me...