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» LymeNet Flash » Questions and Discussion » Medical Questions » Having a new PCP understand your Lyme

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Author Topic: Having a new PCP understand your Lyme
Mountainsky
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I changed PCP's. This one is still affiliated with the hospital I work at so I am glad. She has a Nurse Practioner that works under her so I am elated to hear that as well.

Moving forward, how do I go about disclosing my Lyme/Cos?

I refuse to hate all mainstream doctors. I believe giving them a chance because I do believe there are alot of good ones out there. At the hospital I work at I've met some very lovely nurses and physicians.

This PCP obviously would not be involved in my lyme care. I want to be comfortable enough with her to let her know these things and form a good relationship. This is a big part of my life.

I downloaded and printed a "new patient welcome packet", on it I did disclose my lyme and cos. I did make a request and said all I want from them is to not offer/ask me if I'd like a flu shot as I had an adverse reaction in 2019. I very much want my choice honored and respected.

My llmd will be doing my flu shot exemption for work as she did last year.

Sometimes I feel conflicted on what to share and not with a general practioner.

Thanks

Posts: 420 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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I changed my primary over 3 years ago.
Wasn’t my decision, he told me he would refer me to a psychiatrist and sent me a certified letter dismissing me from his practice. To say he was Lyme hostile would be an understatement! Even when he saw me dying with his own eyes.

Best thing to ever happen to me on my Lyme diagnosis.

My new primary ordered me a boatload of testing based of my recollections of illnesses. He’s the one who found out I had primary immune disorder and why I receive ivig to this day.
He realized I would never be CDC positive on western blots.

A new primary MUST be a good fit for YOUR health needs.

I believe most doctors that see a patient chart with Lyme disease listed on it, think that this patient is going to be a difficult case and ALOT of work.

The fact is, we have done the most work.
While most doctors don’t believe in chronic Lyme disease, they do take notice to your other providers who are part of your care team,

I list my neurology practice.
I list my Immunologist practice.
I list my pain management practice.
I list my obgyn practice.
I list my LLMD practice.
I list my urology practice.
I list my optometrist practice.
I list my pharmacy.

While it looks like a lot of work for a primary, it really isn’t. Other M.D’s help take the load off.

Hard to deny chronic Lyme exists when so many others are on board helping care for you.

Also primary’s like it when patients take their health seriously.
No drinking.
No smoking.
Not overweight.
Keep up on mammograms, colonoscopies, blood work, etc.
Come prepared, appointments 30 minutes max.

I tell my primary he saved my life every time I see him because he did!

Posts: 2290 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Mountainsky
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Oh wow Bonnie, I am very happy to hear you found another physician who was open to helping you and not putting you more into harms way!

It just takes 1 person to change someone's life. Just to listen is a big first step. I am sure he doesn't get sick of you saying that.

I know there are primary's like this I guess we just dont hear about them enough? I've heard too younger doctors are more open and less resistant to chronic Lyme.

Nothing is all black or white anymore.

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Bartenderbonnie
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Thanks Mountainsky

I believe my guardian angel sent him to me.
Your guardian angel will do the same for you.

Posts: 2290 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
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They are pretty essential to our recovery.

My PCP has had Lyme and so has his daughter. It is still a great fit for me. He is beyond awesome.

The downside is that he may retire in the next few years. I pray not!

--------------------
--Lymetutu--
Opinions, not medical advice!

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lisaloo
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I tell my PCP pysician I have lyme. She told me that it would go away within 6 months even without treatment so I can't have lyme. Teaching health system even. So I just focus on the other issues that she can help me with and let it go.

--------------------
Lisa T

Posts: 33 | From madison wi | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
terv
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I go to so many specialists I haven't found a need for a pcp. Maybe if I found one who was lyme friendly and agreed with treatment plan but that is such a long shot I dont bother.

Thinking about it, I haven't in many years think "I wish I had a pcp to handle this".

What does everyone use them for?

Posts: 765 | From Somewhere | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
daisys
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I also go to a lot of specialists. I tell them I appreciate their education and experience,

then tell them that what I bring to the table is that I am the world's expert on me.

Almost without exception, they welcome that attitude and talk positively about teamwork.

The PCP is hopefully someone who knows you well, listens to you, and believes you.

They refer you to the specialist they feel is best for you.

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Bartenderbonnie
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terv
I use primary for basic maintenance and referrals.

My last appointment, 2 weeks ago, was because I wanted a covid antibody test. I did not see my primary but his P.A. She declined to order me the test. I sat there and had to decide if I should go over her head and ask to speak to my primary. 100% he would have ordered me one.

So do I risk animosity with this medical relationship that I treasure?

I decided to not pursue that avenue and ordered my own test through Quest.
We must pick our battles carefully.

And 2 months ago, I had my 6 month follow-up with my primary and I mentioned I had bone pain through-out my body. He ordered a bone nuclear MRI. Sure enough, osteoarthritis (Lyme Arthritis, you say tomato I say tamato) in feet, ankle, knees, hips, back, and shoulders.

I remember I had to jump through hurdles to get a MRI with neurologist 2 years ago for herniated disks, not with primary.

Notice on my list of providers, no rheumatologist.
Their drugs of choice are immune suppressants and steroids, not to mention strict chronic Lyme deniers. Next step unknown..

One more thing. . .
My primary filled out my disability papers and I was approved.

Posts: 2290 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
terv
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I am jealous. Everyone posted seems to have good PCPs.

I did have an endocrinologist who handled the maintenance stuff, when I asked him to, and then I went to the urgent care for sick stuff. He retired 2 years ago but I thinks I can order a lot of those maintenance tests myself. Otherwise my lyme doctor seems to handle most stuff. If I complain about something he either tests for and/or treats it. Or sends me somewhere. He can be so critical of other doctors diagnosis/care. In one sense I appreciate it because he does point out flaws in their testing but on the other it can be annoying listening how the doctor got it wrong and then I have to follow-up with the doctor and inform them of his opinion.

However....
I get a better physical exam with him than any PCP I have had. When I have tried to find a PCP, they are so critical of Lyme stuff I haven't bothered to go back.

I could possibly use my son's Lyme doctor but would really prefer someone who is uses insurance,

I think I will ask my lyme doctor for a recommendation because then it makes it hard for him to criticize them as he was the one recommending them. :)

Posts: 765 | From Somewhere | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
   

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