Thanks for reading this. I could use some advice. I think I'm starting to not trust my LLMD.
He was great the first few years, but now I just don't know. He treated me for Lyme based on positive test results from Igenex. I test negative thru Labcorp. Two months ago, I stopped treatment for Lyme because I was feeling great and we wanted to give it a try after 2 years of antibiotics.
Here's my problem, two years ago I also tested positive for babesia thru Igenex, and negative for it thru Labcorp. My doctor said my Igenex titer was so low that I didn't have it and that Labcorp's test for babesia was good enough.
Now 5 years into this illness, I test positive for babesia thru Labcorp (test was ordered by a different dr). I saw him today and he says again, my numbers are so low they're probably a negative. However, it was positive enough for my city health department to call me since they flag all positive tick-borne illness results.
I want to trust him, but he's making me second-guess myself -- like I'm making this up. All I know is I just don't feel well. I'm out of breath all the time and breathing isn't satisfying, I have a dry cough, headache, I'm lightheaded/fuzzy, my vertigo is coming back after 2 years, I'm dying of thirst, my body feels like it's buzzing, I get the chills all the time -- even in the bathtub... I don't know. I even had a low-grade fever at the office this AM. Still, he said it was more likely that I have asthma than babesia.
He wants to do another test through Labcorp next week -- some sort of blood smear. He also wants me to go to a pulmonologist to check for asthma. He said to get the blood test and come back in 3 months.
So -- anybody have any opinions or thoughts to share?
Thanks so much, Jenny
Posts: 45 | From New Jersey | Registered: Sep 2008
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posted
It would probably help to post your test results here.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Was it a postitive for Babesia WA-1? If so, everyone gets a positive it seems. I'm really wondering.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I ruled out asthma, but it was before I was diagnosed with Lyme. It's not a bad idea to rule out asthma, but I don't really think the rest of your symptoms sound like asthma.
Seek, I was negative on all tests for babesia. I was diagnosed clinically.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My LLNP uses Labcorp, but didn't bother having me tested for Lyme and Co-infections through them. She says it's not any good for that. I tested positive for Babesia through FISH from IgeneX...did you ever have that test? Regardless, Babesia is a clinical diagnosis, just like Lyme, isn't it?
Posts: 34 | From Pennsylvania | Registered: Dec 2010
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
If there is a hint of babs in the testing along with bab symptoms, I would just treat it or get a doc who will.
I don't mind Lab Corp so much. I recently had a CDC + lyme western blot through them.
It's good to do the abx challenge before testing though.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I understand that Fry Labs has a very comprehensive Babesia test, which I'm considering. Might be worth it for certainty.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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I think I'll do his retests next week, and await the results and his opinion, but if I'm not feeling better by then, or satisfied with his response I think I will move on.
As for his questioning Igenex, he said they set their baseline too low, I guess giving out false positives. Said the same thing about Labcorp this AM.
I had an LLMD early on who I walked away from because I didn't buy into the muscle testing stuff, but she said I needed to treat for babesia. Maybe I'll have to go back to her for treatment.
I've heard about Fry Labs... might be a good place to start.
Thanks for all the replies, Jennie
Posts: 45 | From New Jersey | Registered: Sep 2008
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posted
If you have some symptoms of Babesia, it is a little odd that your doctor doesn't consider a short trial of meds, to see how you react.
My ILADS doc considers a negative test worthless (since there are so many strains they can't test for)... while a positive + symptoms would logically most likely be Babesia.
It's worth ruling our asthma regardless, so the pulmonologist appt. makes sense. My doc did the same thing. You just take a little breathing test with a fancy machine, assuming his office has one.
Posts: 584 | From NY | Registered: Feb 2009
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quote:Originally posted by tiredlymie: [QB] My LLNP uses Labcorp, but didn't bother having me tested for Lyme and Co-infections through them. She says it's not any good for that. I tested positive for Babesia through FISH from IgeneX...did you ever have that test? Regardless, Babesia is a clinical diagnosis, just like Lyme, isn't it?
Yes... Labcorp is a really good lab FOR OTHER THINGS... not Lyme & Co.
Babesia is quite often a clinical diagnosis since the tests are really good at missing it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Seekhelp, I don't think it was the Babesia WA-1 version. My Igenex lab report says that WA-1 relates to the duncani version. But I could be wrong.
Posts: 45 | From New Jersey | Registered: Sep 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
All of your symptoms point to Babesia. You have a positive test.
I don't know what's wrong with your doctor, but it's not your responsibility to get a test result that is positive ENOUGH for him to treat you. Obviously, he is reluctant.
Get a new doc.
As Babesia is a protozoan that infects the red blood cells, it clinically follows a relapsing Malaria pattern.
Read all the symptoms associated with relapsing Malaria. Sound familiar?
posted
My insurance only pays for Labcorp, so I really don't know how good Quest is... I think I've readt that it's on-par with Labcorp, though. From what I hear, those labs are good for basic tests, but not real great at finding tick-borne illnesses.
Jen
Posts: 45 | From New Jersey | Registered: Sep 2008
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I'm really wondering.
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