posted
I finally have my first visit to an LLMD on wednesday. What should I expect from this first visit? And advise as to questions I should ask? I'm kinda nervous that he will tell me I don't have lyme, that it was curred with the initial abx. Will he do another blood test? I don't think my first one was through IGENX. I've convinced myself I don't have lyme, that it is something else, what I don't know. I guess because I'm not nearly as sick as everyone else on here. I only have pain in my joints, that could be anything. Anyway, any help would be greatly apprciated.
Posts: 48 | From Eden Prairie, MN | Registered: Feb 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
A good LLMD will order new blood tests, most likely from Igenex. Maybe from Fry labs. Maybe other labs, as well.
You don't have to be super sick to have Lyme! Some patients have very few symptoms. Many feel generally healthy with only occasional symptoms. Some are sick as dogs.
You sound like you had an exposure and have previously treated for Lyme. You are smart to find an LLMD to see if need further treatment!
Try not to "psyche" yourself into thinking you do or don't have Lyme. Your doctor will assess your symptoms and the lab work, then you will know for sure. If it is not Lyme, you could have another tick-borne infection that needs treating.
LLMDs become good infectious disease doctors. If you test negative for all tick-borne infections, your doc will probably continue to look for the cause of your pain. Many pathogens can move into our joints and create inflammation and pain. Even really common ones, like Strep.
You are on the right track. I know, the first visit is nerve-wracking (I nearly cancelled mine! So glad I didn't!!), but you are doing the right thing!
Good Luck!
Posts: 7052 | From Colorado | Registered: Mar 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I echo the excellent advice of BoxerMom. And, I was about to post Melanie's thread but glad she beat me to it.
You want to find the truth and a solution to the problems, whatever they are and whatever the underlying causes.
Present your history, symptoms and questions and let the LLMD do his job. You may or may not have lyme - and there is much more to consider as lyme seldom travels along. Most good LLMDs are excellent diagnosticians in the field of tick-borne infections. The experience of a good LLMD counts a great deal.
Did you get that LLMD's name from someone here, from your local lyme support group, or from someone you trust? Is he an ILADS-educated LLMD, meaning having read all their research, attending some seminars, etc.
Some doctors will say they are LL or treat lyme but are not well educated in the field of tick-borne infections.
While not all LLMDs practice exactly in the same manner (which is good as not all patients are the same), still, there are certain pieces to the ILADS research that anyone treating tick-borne infections must know.
You can often find out if a doctor is really LL by asking what they think of Dr. B's approach. If they don't know about his work, run.
Good luck. -
[ 04-11-2010, 03:05 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might look over the Self-care section and the supplement section here before your appointment.
posted
Yes, please tell us you got the name from a reliable source!!! There are very few LLMD's in MN.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I have a lot of symptoms, but most are mild. I am not as sick as many people here.
I kept thinking it wasn't Lyme but deep down I know it is. I have an appt. on Tuesday with a real LLMD not like last time.
I wrote down all the questions I have so that I can make the most of my 30 mins. He agreed to only make it a 30 min appt for less money instead of the usual 1 hr that costs double since I have already been DX. He saved me some money which I really appreciate.
I am going to be tested through Igenex when I can afford it.
I think a good sign of an LLMD is listening to what they say, and what labs they use.
My first clue with the last doctor should have been when she said it wasn't good to be experiencing new symptoms on doxy. But I was hoping maybe she meant like not good that sucks, but no, she meant like doxy wasn't working. She accepted my insurance so I was really trying to convince myself she was good.
So my personal advice is, if you are not 100% convinced and satisfied with the LLMD don't waste any more money or time, find another one. I ended up running out of doxy because I couldn't get a new LLMD in time and now I'm having at least 3 new really annoying symptoms!
posted
I got bit by a tick and started having Lyme symptoms 10 days later.
The symptoms were mild, though, and I didn't realize they were all related at first, so it took me a couple of months to figure out that I did have Lyme disease, even though that was my first thought when I saw the tick--"I wonder if I could have Lyme disease?"
I also had the misinformation that everyone gets a rash--not true. I never got one, but I definitely have Lyme.
My symptoms have been joint/muscle pain, fatigue, malaise, emotional volatility, and an occasional muscle twitch here and there.
I've remained functional enough to work every day--not always productively or happily, but I've been there.
Meanwhile, I've had Lyme for about 10.5 months now, and am just now beginning to see the first signs of improvement in my condition, after more than 4 months of good treatment from an LLMD.
You can have Lyme with only minor symptoms, and it can be difficult to get rid of, even in the absence of known coinfections (none suspected for me so far).
One thing a good LLMD will never tell you is that you must have been cured by previous antibiotics, so you can't have Lyme now, despite having symptoms and/or a positive test. ID doctors are the ones who tell people that, and send them away without help.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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