posted
Met with the new Pcp today. I chose him based on a referral from a friend, he is not a lyme literate pcp.
I went in with an open mind, since I need a pcp and I needed to find one that would be open to me receiving treatment through the lyme doctor.
He did go through the blood work I had from the lyme doctor, I wanted it all on the table to make sure this was going to be the right fit.
I can tell he really cares about his patients, which is more than I had from my last pcp. It's because of this last experience and lack of proper diagnosis that I went in with my defenses up today.
I also think he could tell I was defensive about my recent diagnosis, but I wanted to hear what he thought having been down this route before.
He told me he would be supportive of me receiving the lyme treatment through Dr. G, But he didn't want to say either way if I was positive or negative based on what he knew to date.
He said he's treated many patients with lyme before but I got the feeling from him he relies heavily on the blood work for it.
Obvs, I only have the one positive band, low vitamin d and low cd57 on my side here and I explained I'm being treated for babesia clinically.
He said he would give me a referral to see a lyme doctor at mass general in Boston to get a second opinion.
I want to trust him really do.
Confused... I feel like I am making positive strides in my treatment and I'm not sure about this program in Boston. Do I go and get the second opinion?
We left it that I would continue my treatment through dr. G and circle back in a couple of weeks to see where to go from there.
What do you guys think should I continue in my search for a pcp or stick with it and get the second opinion at mass general?
My instinct tells me no because I'd be back with everyone telling me my test is negative and I don't have lymes.
-------------------- Diagnosed with Lyme 4/7/14
KB Posts: 87 | From Townsend, MA | Registered: May 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
A second opinion on what? Whether you have lyme? Mass Gen is not going to say you have lyme based on the testing evidence you have, and may even question the babesia. They would probably even call positive lyme tests false positives.
So, why go there unless you want to be told you don't have it?
Was that a condition of the new pcp accepting you as a patient even though he would not be treating you for lyme? If so, doesn't sound like a good fit. If not, and you can trust him on other things, then it is useful to have a pcp for support even with a lyme doc doing treating for that problem.
Posts: 2888 | From USA | Registered: Mar 2004
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A second opinion on what? Whether you have lyme? Mass Gen is not going to say you have lyme based on the testing evidence you have, and may even question the babesia. They would probably even call positive lyme tests false positives.
So, why go there unless you want to be told you don't have it?
- WHAT POPPY SAID ... AMEN.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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posted
No this wasn't a condition of seeing him. I think his point was that mass general has some of the best doctors in the world, which it does.
He said he would be happy to refer me to any of these doctors to confirm (or deny) my diagnosis.
I thought it was interesting when he asked me - "so what if you were to see the number one leading lyme doctor in boston, and he told you he was sure you didn't have lyme disease, would you believe him?"
I told him no, I'm sticking with my gut on this. He thinks I should keep an open mind.
I told him it's hard too be open minded and not get defensive when I've lost so much of my life to this.
I was like can you imagine my relief when I finally found a doctor that looked me in the face and told me they knew what was wrong with me. Add in the mental emotion to all of the physical emotions... This stuff is hard!
Perhaps we can both teach each other something
-------------------- Diagnosed with Lyme 4/7/14
KB Posts: 87 | From Townsend, MA | Registered: May 2014
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poppy
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posted
"The number one leading lyme doctor in Boston" is going to turn out to be Steere. Betcha a million bucks.
Since you are very new, you will not know that Alan Steere is number one alright, number one at telling people they don't have lyme.
Yikes! No way would I ever send any lyme patient to him.
Posts: 2888 | From USA | Registered: Mar 2004
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poppy
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posted
And don't give out the name of your lyme doctor to any of these people, preferably not to your pcp either if you can at all avoid it. Anyone who thinks Steere is a good place to send a patient, might just turn your doc in to the state medical board for treating on a clinical diagnosis, even though the govt health agencies give lip service to it.
They don't really mean it, and those kind of diagnoses, without test support, can cause a patient and doc a world of trouble with people who don't want lyme treated.
You may think this is paranoia, but it is based on years of experience with such people.
[ 05-14-2014, 05:14 PM: Message edited by: Robin123 ]
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Yup that would be him. I've actually read about him before. He's made many advances in lyme testing, for all of those who are lucky enough to test positive of course. I really wish I did...
Poor guy I think he had no idea what hit him he got all red in the face and everything! He was a good sport about it though.
I wonder if he secretly hopes I won't come back. I think I'm every doctors worst nightmare and rightfully so!! )
-------------------- Diagnosed with Lyme 4/7/14
KB Posts: 87 | From Townsend, MA | Registered: May 2014
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posted
What do you mean?? You already saw him? Why would you go BACK??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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beaches
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posted
Mass Gen, like most major medical centers in the US DOES have the best docs in the world...for brain tumors, transplants, rare genetic disorders....etc.
To my knowledge, any major medical center focusing on Lyme is through research conducted by Fallon, Sapi, McDonald, etc. -- ie, not patient treatment.
Posts: 1885 | From here | Registered: Jul 2012
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beaches
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posted
So are you saying that you are acknowledging that the "leading" doctor you saw is Steere?
I can tell you that yes, he's made many advances in Lyme...in regards to his research 20+ years ago attesting to the fact that borrelia is a chronic, persistent infection.
He's a real gem! Since his/cohorts patents on tests and vaccines, he and his IDSA cronies have incredulously managed to write guidelines that deny the existence of Chronic Lyme Disease, thereby, denying tens of thousands of really sick people treatment! And his cronies are paid by insurance companies to testify against patients with Lyme Disease! Follow the money, honey!
So what say YOU?
Posts: 1885 | From here | Registered: Jul 2012
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LisaK
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Member # 41384
posted
we search and look and want to find hope. I feel just as you. searching for answers, but I agree that you would be wasting your time
It sounds like you may be in the Bargaining stage. Me too, but I have a big combo now of stages 2,3,4. leaning towards the depression part. I cannot wait for acceptance and see it no where in sight.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3562 | From Eastern USA | Registered: Jul 2013
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Lisa, I hear you - Dana from the UOS film has been running a Lyme series on the weekends, called lymelesslivemore. There is one more and it is free Thurs - Sat if you sign up for it.
They ran a topic recently on helping people recognize what gifts they may have gotten from having Lyme.
Mind you, it ain't fun, but I was able to recognize a lot that I have gotten from it. I became a different person and some of that different person is stronger and more compassionate than the old me.
[ 05-16-2014, 01:57 AM: Message edited by: Robin123 ]
Posts: 13117 | From San Francisco | Registered: May 2006
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LisaK
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posted
Robin I just signed up. thanks. I am excited about this.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3562 | From Eastern USA | Registered: Jul 2013
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posted
Isn't that where the doctors kidnapped Justina Pellitier? Just sayin' . I wouldn't waste my time.
Posts: 143 | From Pittsburgh | Registered: Jan 2014
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beaches
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posted
mvdr no, that was BCH (Boston Children's Hospital). No idea if it is affiliated with Mass. Gen.
Posts: 1885 | From here | Registered: Jul 2012
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