lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I have been trying to find a new primary doctor but it seems my area does not contain one doctor who knows diddly about Lyme.
I was referred to a "holistic" local MD in my area by my counselor. My counselor felt sure this lady would be willing to work with my LLMD and would believe in the existence of chronic Lyme.
So, I spent an hour of my time this morning explaining my situation to this MD. I told her that it's possible my LLMD will want to place a port in my chest eventually. I asked her if she would be willing to write the orders for one if my LLMD requested it.
She gave me the most nervous, scared look. She then said, "I was afraid you'd ask something like that of me."
She knew nothing about the Lyme controversy, co-infections, testing inadequacies, etc. She only said that she had heard there were a lot of false positives with Lyme tests. We had no rapport whatsoever.
She did mention that she had another patient who probably has chronic Lyme disease. I guess the patient collapsed in her office and couldn't move so the doctor called an ambulance. She told me, "I referred her to an infectious diseases specialist".
So, the "holistic" doctor turned out to be quite traditional. I could tell she thought I was not quite right in the head.
I'm disappointed because I feel like absolutely no physician in my area would be willing to save my life in a Lyme emergency. I just hope that day never comes.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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bettyg
Unregistered
posted
lyme lady,
that woman should have NEVER seen you; did receptionist tell you she was LYME LITERATE??
spending 1 hr. there, and "i was afraid you'd ask me that!"
and then recommending you see INFECTIOUS DR. was insult upon insult! so sorry for all the BS you went thru today.
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Sounds like the runaround to me.
Best of luck to you in finding a compassionate GP that will help.
I actually ended up working with an infectious disease duck that co-operated with my LLMD for the IV's. My LLMD was the bomb, and handled the infectious disease duck with such finesse!
So, miracles do happen!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I think the counselor who referred you should pay for that appointment. Knowing you and knowing the doctor, she should never have referred you. She did not do her homework, obviously.
How disappointing.
I'm sorry that this is so hard for you. I assume you've asked at the local support group - and called all the LLMDs office around for suggestions.
It is sobering to realize that, in case of an emergency, we are so much on own own. I do hope you find someone soon who can offer you the balance of care.
posted
In 2006 I found a Florida Lyme support group here on Lymenet.
The leader refered me to a doctor who "everyone loved". He treated me like crap every time I saw him and refused to admit that I might have Lyme Disease. It was a terrible experience.
When I told her it was a mistake, and that I couldn't understand how ANYONE could like this man, (he went to Yale, I should have known better)she told me it must have been a misunderstanding between me and him.
His "personal assistant" was disorganized and even sarcastic. She couldn't get the tests ordered right and wouldn't own up when she did something wrong. She was young and cute and I think they had a thing going, IMHO.
It was just another disappointing and disheartening detour on the Lyme highway.
I hope you can find someone who will help you. It sure seems like the needle in a haystack situation.
But we Lymies are the toughest of the tough, and it's a good thing! Posts: 353 | From Florida boonies | Registered: Nov 2005
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posted
I had a similar experience with my original primary doc who said "well that's another system" when I told her I was working with a integrative medicine doc.
Then my integrative doc found the lyme and I knew I needed another primary doc.
So I called a totally different clinic and asked the scheduler if there was anyone there who would be OK working with a holistic doctor -- she though about it and set me up an appointment. I didn't mention the Lyme.
Then when I had my appointment I carried with me my test results from IGENEX and a letter from my integrative doc and a typed out list of my meds and supplements.
I also brought a copy of my last labs from my old doc.
I came clean to her and her nice nurse who did the intake about the Lyme dx and my other LLMD. I just said I didn't like the system at the other primary clinic and was looking for a new primary doctor.
They took it all in stride. I was much relieved and feeling the angels watching over me once again.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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We had no rapport whatsoever.
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