My doctor has referred me to a new specialty group

I received a letter from my PCP doctor that the group that he is part of has created a new specialty group of doctors to deal with hard or complicated cases. He states in the letter that he thought of me right away and that he will continue to work with me as my PCP but that this new group of doctors, who are the best in their practice, are going to spend as much time as needed to heal me and are going to use all of their resources to make it happen. The group that he belongs to has over 300 doctors and specialists.

OK, so I have mixed feelings. The ill person in me got excited and can't wait for the appointment next Monday. However, the person in me who has been stepped on, lied to, ignored, and belittled by most of his doctors can't help but laugh at this and say "yeah right, these $%%#@ just want another way to milk my insurance".

So to compromise, I promised myself that I will keep the appointment. But, I am drawing a chart with the silhouette of a body and I am writing down every part of my body that hurts and that has been impacted by the infection. That should take a few hours to go over every part of the body.

Oh yeah, one other thing, all of this is covered by my insurance and I don't even have to pay my deductible because it is considered as a follow-up visit.

I really want to be open minded but there is so little trust left in me. What would you do?

If it makes you feel ANY better, I think we all know what it feels like to be treated horrible by doctors...but I am seeing change, sort of.

My PCP at first didn't believe I had lyme, relatively unsympathetic but for some reason I still liked her and thought that she was a pretty competent dr. When all was said and done she knows I had lyme AND knows that I couldn't get treatment from an infectious disease doctor which ticked her off because it makes her more liable.

I also went to a cardiologist (because of lyme) and I was prepared for him demeaning me etc. etc. but instead he explained to me what is happening to my heart because of lyme and that he sees a ton of lyme patients. I was pretty surprised.

It is easy to dismiss a lot of doctors because of what so many of us have been through, but I honestly think that probably because of me, my PCP will now take lyme ten times more seriously then she did before. And in the end, she sees that I'm healthy. I was sick, I got treatment, and now I'm better.

I think that is the best way to get the word out there in a sense. open yourself up to doctors and many will see you get better (you will!) and even if you get a lot of crap from other doctors...if there is that one doctor that is open minded, whose mind you can change about lyme...totally worth it.

Healing98

I wish you well. It's tough to be in this place, I'm in the same as you, waiting for the next 3 appts with 'specialists' because my pcp wants me to, to rule out anything other than 'lyme'. My pcp said she believes my positive IGeneX, but 'wants me to get further testing to make sure'. In the meantime, months are passing by and I'm still ill with no treatment. This all makes such logical sense. Not. When I confronted the pcp before she ran out of the room 'after' the appt was over, she finally committed to saying, "If the ID doc finds nothing(pcp insists the ID will find/treat my LD, as 'they are the educated ones about LD', such false propoganda these drs are brainwashed into believing), come back in to see me and 'we'll discuss it'." Well, *** does that mean? What is there to discuss? I have LD, I get treatment, I get better. I guess this isn't the way this will go. God only knows what I'll be facing after the next two months go by, the specialists find nothing, and my pcp is busy shuffling the nut shells around and continues to play with my health.

I'm tired of the run around. I'm tired of dr's saying to me 1) IGenex is too often 'false positive', you don't have LD, and/or 2) you have LD, but lets just get other dr's to check you out before we start treating you to help you get better.

It's a nightmare, abuse and all of this should be illegal. Non-treatment is the same as killing someone.

Let us know how things go for you. Whatever you decide, we will not judge you. This isn't easy to deal with, all of these life choices and situations, and being so ill, well.... do your best and our thoughts/prayers are with you.

Trav, I hear what you're saying and I agree. My question is, how does one find out the belief/stand of dr's they are scheduled to see?

This would be invaluable to me, going into an appt knowing what the Dr believes/practices. That info would be helpful in knowing even whether to keep the appt.

Thanks in advance.

I make phone calls now, and ask a million questions. If they won't/can't answer my questions, then I won't make an appt - most offices don't like me. I just did this in order to find a doctor that was willing to help me with my thyroid/adrenal issues.

For some doctors, you can research them online as well.

for both this lyme disease and for another medical issue I had years ago, I learned that I had to go to SO many doctors until I found the right one for me. The right one for me is the one whose specialty is in what I need. But also, even wit the specialists they are not all good. In fact, maybe only one out of 20 are good!  So I had to try one then another then another. I went to four other llmds before this one and while they claimed to be specialists in this I found they did not know as much as I needed. This same thing happened with my previous medical issue, and it took a  lot of searching and trying until I felt like I found someone who really knew their stuff.

If they act dismissive and don't look you in the eye and belittle your concerns, it is often because they really don't know how to help, and they are not the right doctor. Just keep on trying until you find someone who you really feel knows more than you do-! And who really feels helpful. Best of luck.

 

Please do!! And best of luck with it all!