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Saw LLMD today for first time...would like your feedback!

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Lyme Disease
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Posted 3/24/2014 10:51 PM (GMT 0)
Went to first appt with an LLMD today after three months of total craziness trying to figure out what's wrong with me!  Here is my back story:  Two days after Christmas my cheek started to twitch and I felt a small patch of numbness next to my nose.  On day 5 of this I went to a Neurologist who didn't know what it was but did an MRI of Brain and carotids that came back normal.  He said if it doesn't go away come back in 2 months and we can give you botox!  So over the next few weeks the symptoms got worse (the twitching and numbness spread and a burning, tingling sensation started as well).  I went to another Neurologist and a Celiac specialist (one of my doctors wanted me to rule out Celiac).  All of which came back normal.  Then FINALLY someone recommended I get an Igenex test...(the Elisa had come back normal along with another Western Blot done by BioReference Labs).  Got the Igenex and I came back + for 5 bands (IGM 18, 30, 39, 41 and 83-93).  IGG was negative.  So I started on Doxy 100mg BID until I could see this LLMD today.  He said I may or may not have Lyme because the IGM is "not always significant".  He did a panel for coinfections that will be back next week.  He wants to see me in three weeks to go over the labs.  If the symptoms haven't gone he said sometimes the symptoms go away two to three months after antibiotics are stopped.  Not sure how I feel about all this.  Especially the confusion about the significance of IGM results and the lapse of treatment for 2-3 months while we "wait and see."  He said if it is Lyme I should expect a good recovery and that if need be he has treated people for up to 6 months with IV/Injection or oral antibiotics and other meds with good success.  I guess my main question is about the IGM relevance.  Should I feel confident I have Lyme with those + 5 bands and if so why doesn't he feel the same??? Thank you so much!!  Also...I have another appt with another LLMD in two weeks....I made that just in case I didn't like this guy!   
Posted 3/24/2014 11:39 PM (GMT 0)
Hi,

Positive test results are almost never false. Two or three months may be long, but many MDs make you wait that long.

I don't know about the other stuff; he doesn't sound very Lyme Literate.

Margaret
Posted 3/24/2014 11:48 PM (GMT 0)
If I were you I'd keep your appt. with the LLMD:)
Posted 3/25/2014 11:42 AM (GMT 0)
Yeah, Lyme symptoms don't "just go away." They move, rotate to other areas and quietly cause a whole world of problems.

The dose of doxy you were given is too low to do any real damage to the bacteria.

If I were you, I would educate myself thoroughly in order to be my own advocate and go see that other LLMD.

Good luck!
Posted 3/27/2014 2:11 AM (GMT 0)
Good choice that you are getting a second opinion, good luck!!
Posted 3/27/2014 2:44 PM (GMT 0)
Sorry, but that was no Lyme Literate doc! The IgM is the response that is created within the first months of infection and with the Lyme specific bands that you show as positive, you have to have had the bacteria in your body for it to react to these bands. Plain and simple.


As Achievinggrace said - 200 mgs a day isn't enough to even keep the bacteria from replicating, much less kill any of the bacteria. These are incredibly complex bacteria, not the usual stuff, so it takes 200 mgs of Doxy at least twice a day, and for many it's 200 mgs three times a day to begin to kill the bacteria. There is plenty of research supporting these dosages....if your doctor is willing to learn, because they are not Lyme Literate or they would know these things.
Posted 3/27/2014 6:00 PM (GMT 0)
Yes, and better safe then sorry. I was told 10 days of abx when I showed up to the ER with a tickbite. Took years for my health to decline but when it did....it was rough.

Not worth the chance - stick with dr #2. Hopefully they will be better.
Posted 3/31/2014 2:27 PM (GMT 0)
I just saw these responses now.  I must not have clicked to be informed when someone responded.  Thank you so much for the feedback.   Traveler....sorry for the long email I sent you.  Your response pretty much covers all my questions.  The ambiguity of my diagnosis, along with not seeing any improvement since starting the Doxy has been very stressful.  But the certainty you expressed about the test results and the dosage of my doxy being too low makes sense to me.  Thanks again everyone!
Posted 3/31/2014 4:30 PM (GMT 0)
I'm glad I was helpful! :-)
Posted 4/2/2014 7:37 PM (GMT 0)
Just got back coinfection test results from that original "LLMD" that you all didn't think was really lyme literate. (I didn't meet with him, I just picked up the results). I will be bringing them with me next week when I go see the other Doc that was recommended to me. They were all negative. I am a little deflated by the results. Not that I want to have a coinfection but in some way, if there was a positive, it would have helped me feel more confident in the lyme diagnosis. The labs were done by Quest and he tested for Ehrilichia, Phagocytophilum, Bartonella, Ricketts, Babesia. I can't wait to go to the other LLMD next week. It's just so hard for me to hold on to the hope that treating for Lyme is going to end this nightmare I've been in these past three months. Thanks for you feedback!
Posted 4/3/2014 2:36 AM (GMT 0)
I am so glad your appointment is right around the corner! Just bear in mind that you will not get all of your answers next week. Treatment is sometimes based on clinical diagnosis and takes time so you will need patience and to place trust in the new LLMD. Good Luck!!!
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