posted
I had a positive EIA 1.87. then the western blot came out negative with only band 23 IgM being reactive. Is this something I should still pursue?
Back in April I pulled a non attached tick off my leg that must have been in my bed after I got up in the morning. We had been fishing several days beforehand and I had pulled 3-4 ticks out of each of my daughters hair.
About 3-4 wks after all this I started with severe dizziness, joint and muscle pain, daily headaches and I am so tired.
My husband also has noticed when I am feeling particularly awful that my speech slurs and I am hard to understand.
I was started on abx by my PCP on my suspicions but after 3 days I felt so much worse and completely quit them after 5 days along with the prednisone I was given.
After all of this, could this be Lyme even with the negative result?
Any help appreciated. Thank you all
Also wanted to add that I have been having pain and weakness in my left arm with pins and needles feeling throughout my whole left side.
MRI of brain is clear
Posts: 53 | From IL | Registered: Jun 2011
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posted
the ELISA is a positive .. that means you have Lyme. Unless you were tested thru Igenex Lab for the Western Blot, I would not worry about only band 23 showing up. The other labs are not that good at finding lyme.
If you were recently bitten, then DEMAND antibiotics right now. Your life and health depend upon it.
Feeling worse when beginning antibiotics is likely due to a "herx"... here is info on that reaction:
posted
It was a quest lab. I made an appt with an Infectious disease doc for thurs. Supposedly they send all lyme pts to her.
I made an appt with an LLMD whose name I was given. They cannot get me in until Oct. and honestly I do not have the $500 up front they are requesting since they do not accept insurance.
I hope the ID dr helps. I have just started on this and am already frustrated.
How awful for all of you that have been dealing with this for years!
Posts: 53 | From IL | Registered: Jun 2011
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posted
I just posted on your other thread in seeking, then saw this post... whoops.
Don't be discouraged if the ID is no help whatsoever!!! A lot of people with Lyme have been to an ID and got nowhere.
My symptoms were classic Lyme symptoms and I specifically asked the ID to test me for Lyme. He said that my symptoms were not Lyme related at all and that I need to see a psychiatrist!
We'll pray for a miracle that this ID knows her stuff, but educate yourself before you go and don't take any crap from her. This is my opinion but the majority do not understand Lyme.
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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posted
Thanks for the info. I am just confused with having a positive test and it comes back saying progressive lyme only to turn around and western blot be negative due to only one band being reactive and then neuro tells me everything is fine.
My husband thinks I am crazy to pursue the lyme angle since the dr told me I didn't have it. I am frustrated since all my research and the wisdom from those with lyme tells me that this may not be the case.
Do my symptoms sound like lyme? Before my MRI came back fine I was worried it was MS actually. Whatever it is has come on with a vengeance and turned my life upside down.
Does anyone experience swelling in feet and ankles? I have had such horrible swelling since all this started that I have to take medicine for it or I literally gain 5-7 pounds in a day of fluid.
Posts: 53 | From IL | Registered: Jun 2011
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posted
Yes, your symptoms sound like Lyme. For now, ignore your husband. You come first right now.
Quest is well... Quest...
It's not uncommon to have a positive ELISA and negative WB. Not at all. It's the less than sensitive lab that missed it. Some labs do not test for ALL POSSIBLE bands.
Neuros and ID drs know VERY little about Lyme. ID drs THINK they know EVERYTHING about Lyme ... NOT!!
Here's your education .. get started learning so you will be ready for that ID appointment.
quote:Originally posted by lmedler: I was started on abx by my PCP on my suspicions but after 3 days I felt so much worse and completely quit them after 5 days along with the prednisone I was given.
Feeling bad on abx is a confirmation of Lyme. Please don't take prednisone, it's contraindicated in Lyme Disease. It makes it worse.
Good advice here already. I'd make and appt with the LLMD in case the ID doctor doesn't work out.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks, Six. I meant to discuss the prednisone.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I had a positive ELISA from Quest and was reactive for band 23 only...on both IGG and IGM. MY PCP told me nope...no lyme.
After doing my own research, I decided to see an LLMD. He didn't even order an Ignenex WB on me. Told me to save my money...that band 23 was specific for lyme and I had symptoms so we started treatment.
As already stated, the abx making you feel worse solidifies your suspicions. You were probably experiencing a herxheimer reaction.
Maybe you can get your hubby to watch the documentary Under Our Skin. My hubby watched it with me and it helped him understand things a bit better.
Good luck and get in to see an LLMD.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
i know it's hard to imagine spending that amt of money, esp. money you don't have, but try not to let the money stop you. i am broke. i found the money by several means. i used a regular credit card and the Care Credit card, and make payments, i borrowed from family and friends. many doctors will allow you to make payments instead of all at once. see if this doc will take the Care Credit card--it allows payments w/o interest. prayers and good luck to you!
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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posted
I totally understand how you feel. My husband was diagnosed with Lyme and Babesia in April and the cost is astronomical. Between LLMD (out of network), herbs, vitamins and abx - it's crazy. So now, I was tested and 23 band came back reactive on WB. So now i need to somehow get help. Would be awsome if his LLMD offered a two for one. LOL
Posts: 182 | From North Carolina | Registered: Apr 2011
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posted
My daughter's WB through Quest was reactive on only band 23 IgM - enough for a diagnosis.
Posts: 312 | From Utah | Registered: Nov 2010
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posted
All4twc- so sorry to hear that you are positive too. Here's to hoping for a 2 for 1, lol
Everyone- thank you all for hte helpful info. I feel more prepared for my appt tomorrow. I hope it goes well. I received a packet of info from the llmd dr in MO and wow! It sounds like I need the almost $500 up front plus at least that for tests also. Does anyone know if insurance generally reimburses for any of these costs?
Does anyone know of an llmd that accepts insurance?
Posts: 53 | From IL | Registered: Jun 2011
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