I usually just say, "No one really knows for sure, but my doctor believes that my current symptoms are due to lyme coming back after it was treated. He believes my case was severely complicated by other infections I got from the tick besides lyme. Sometimes I take breaks from my medicine, but after awhile my symptoms usually come back. When I go back on antibiotics, I usually make progress. It's just been a long road because of how complicated my case is and the fact that my treatment was delayed so long." Basically, if your treatment was delayed, if you have coinfections, if you have genetic markers showing lyme is hard for you to overcome (yes, they can test for that), MILK IT.
Even if a doc doubts what you say, they can't really tell you what you feel is wrong.
If they don't believe you that it's active, just be really calm, and say, "This is just my opinion, but I believe it is still a problem." Be nice and calm and rational and express yourself bluntly. This will hopefully creep them out at how certain and calm you are, and plant a seed of doubt in their mind that they are wrong.
This is my advice when speaking with a doc that isn't my LLMD. If you don't have an LLMD, and are trying to get some ill-informed butt head doc to treat you, that would be a whole different story, and you can't really use the "my lyme doc and I believe this" excuse. If I were in that situation, I would just try to find a different doc.
I feel like if the doc I'm seeing isn't my lyme doc, he doesn't need to know EXACTLY HOW LONG I have been on the drugs I am "currently" taking. I feel that that is between me and my LLMD. So, if I have to explain myself to someone, I am elusive, because it's none of their business. I'll say, "i've been on and off antibiotics since I was diagnosed." TECHNICALLY true, but it's been a LOT more on than off, and the "on" is at high doses. I know thinking it's none of their business is sort of shady, but that is what this has come to. I don't need someone who doesn't know me judging me, or judging the medical advice of another doc more experienced in lyme then him or her.
That is my meager advice. I have just found not to give those docs my sob story or a manifesto, just be blunt and stick to your guns. Best of luck. With these docs, it can just be a losing battle, but do what you can to keep your dignity!
Posted by randibear (Member # 11290) on :
i have found out that when dealing with doctor, er, duck who doesn't believe you have lyme, there is nothing you can say that will convince them.
they have their narrow little minds firmly closed and nothing is going to change, nothing.
Posted by Meg (Member # 22) on :
Hi Mike,
It's called a clinical diagnosis, or diagnosis by symptomology....it's how Drs used to practice before they came up with "tests".
There is no foolproof test for lyme disease. Some very lucky ones get a positive on the test, and others are still trying to get that positive, even though they have every symptom of lyme.
Posted by lymednva (Member # 9098) on :
hand him the book cure unknown and say, "here, read this!" Posted by Tincup (Member # 5829) on :
"How do we know there is an active infection if testing is negative?"
You could tell him that at least 60 percent of people treated have been shown to relapse. It isn't proof, but I am sure if he is a duck he can do some math.
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