posted
I wanted to pass along an interesting experience I had today. I met with a doctor about an upcoming procedure (very minor). He looked at my paperwork and said, "Oh, Lyme Disease?"
At this point, I said, "Yes," and I waited for the rest of it - the doubt, skepticism, funny looks, demeaning comments, etc.
He then asked what I was taking for it, looked at my info, and said, "You know, I think it is a shame that doctors won't just admit that they are wrong. It's terrible how people with Lyme are treated. Why didn't we learn with syphilis, since they are related? I just don't get it. It hits so many systems at once, it's just horrible!"
No joke, I started to cry. He was appalled that I go out of state to get treatment. And he was sincerely disgusted that others won't change.
I wanted to post since I know that there are so few of these doctors out there, and I wanted to celebrate the first one I have met outside of the LLMD community. I will take it as the tiniest glimmer of hope.
Posts: 447 | From Vermont | Registered: Jan 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
What a wonderful story.
I do believe that there are many docs out there who truly "get it."
I recently took DD to a cardiologist. I too was expecting the usual doubt, skepticism, demeaning comments etc. and believe me I was on high-alert to address same. I have NO patience at all for any medical person who denies the existence of chronic lyme.
To our surprise, he actually used the term "chronic lyme" as he reviewed her history. I didn't say it, HE did! That was a refreshing eye-opener for us to say the least.
It felt so good to be validated by someone who isn't an LLMD. Not that we need validation by anyone, but you all know what I mean.
Thanks for posting this. Your doc is a keeper, for sure.
Posts: 1885 | From here | Registered: Jul 2012
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
My GP's sister got it and now she asks what she can do for me everytime I go in. She's honest and says, "I'll get fired if I treat you past the guidelines."
posted
Thanks for sharing that story - practically made me cry too! We don't usually get that response, and I think we just usually brace for the barrage that comes next, so, so nice that this doctor is responding, frankly, the way all doctors should be responding to us with these illnesses! Keep this one in the loop!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I went to see a rheumatologist the other day who asked who was treating me for Lyme. I told him I wouldn't say. He looked puzzled and asked why.
I told him because I knew of the controversy involving Lyme treatment and wanted to protect the doctor that is treating me.
He said, "Oh" and then at the end of my exam said, "Well, whatever you're doing, keep doing it." Really surprised me.
The same kind of political shananigans and denegration was carried on when germs were discovered and hand washing was recommended.
Eventually, the truth can not be suppressed, especially when the cases of it is rising exponentially. Most of us, I think, know someone besides ourselves that have Lyme.
If we do, it seems that doctors would too. How long will they turn their backs on their patients, neighbors and those they love...
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Once their family members get infected with Lyme, they tend to come out of denial...eventually.
My father in law is a Dr. Last year when I was fighting for my husband's (his son's) health/life, he kept calling it "Post Lyme syndrome". Telling me that we needed to follow the local Drs recommendations, etc, etc.
We got in many arguments. I kept emailing research studies. Finally, I barraged him with an email with a link to the Lyme disease Memorial Project's autopsy reports and titled the email "LYME DISEASE CAN KILL".
Next thing I knew he was getting his wife, who has MS, to my husband's LLMD.
posted
@lax mom--Sooo glad your father-in-law got on board. Thanks for sharing that information. I just looked it up and 'Pinned' it and put it on my Facebook.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Now I wish states would recognize that Lyme can cause permanent disability in some people. Those in Illinois cannot get a disability placard for their car for more than 6 months, because the state does not recognize Lyme as an ongoing issue.
Thus they have to back their instate doctor (usually the GP, not the LLMD) every six months to get the form filled out.
Nice to hear some GP's are wising up. Mine does not get it, yet, but he just sort of goes along with what I say or ask for (which isn't much).
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Thanks for posting this. My Pcp totally got it. She admitted she wasn't up on the combos.. And referred me to a llmd. But she always supported me and understood. She and two of her sons had Lyme.
Posts: 1728 | From USA | Registered: May 2011
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posted
I've only had ONE non-Lyme doctor respond negatively in the past 13 yrs. Now, I don't know what some of them were THINKING when I told them about the Lyme! But most just accept it as fact and don't really comment.
But I recently found a neurologist who is from India. He said, "You had LYME? That affects everything, all your systems!"
I couldn't believe it! He is a definite keeper!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've had more doctors than I can even count severely discount lyme - and symptoms I described. Thinking back, probably at least fifteen over the years, of various specialties.
But I'm in a state that declares "no lyme in this state." The doctors are taught to believe it with full force. And if they want to stay in practice here, they simply cannot question that.
Never any thought to the other tick-borne infections, either. They are in another world, completely.
After receiving so much verbal / medical abuse around this matter from doctors here - it's a bit hopeful to hear of other doctors, anywhere, that are better informed, even if not experts. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Doctors in the northeast are absolutely overwhelmed by Lyme these days. I had a similar experience recently.
I went to my PCP who I generally avoid due to the same thing...a lecture, comments etc...
Was there a few weeks ago and when I explained to his nurse what my symptoms were, the first thing she asked was if I have had a tick bite recently. Said their office had seven confirmed cases that week.
My pcp was very humble, no lecture, and asked if I wanted test results sent to my llmd. He even used my llmd's name in the conversation!
Every where I turn these days I meet someone with Lyme. It breaks my heart because so many are getting such poor treatment.
A friend was put on 30 days of IV rocephin by the local ID doc and was never told to take probiotics!
Makes me sad....
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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