The day for my LLMD appointment finally came! Dr. Fein was very thorough and she is one of the brightest people I ever met. I feel like I'm in the best hands I could possibly be in.
My blood test results came back IgM: 41 and IgG: 41 58. I could not remember what that meant except that I know it's said here that 41 definitely indicates Lyme. (If someone could explain those results to me I'd greatly appreciate it.)
She said the results were "indeterminate" but the fact that I responded so well to the antibiotics I took before indicate that I have Lyme. So I don't know if I have an official diagnosis but I feel confident that I definitely have Lyme. (Incidentally, the lab results were not from IgeneX, they were from Stony Brook University Medical Center.)
Unfortunately, she was concerned by some of the symptoms I've had and wants me to have an MRI and possibly a spinal tap to see if I have MS too. She is starting me on oral Abx right away (minocycline). If the MRI comes back normal then I will go on IV Abx for 3 months. If the MRI comes back positive then I have to have the spinal tap. This is a little scary but my intuition tells me I don't have MS and I've been right about everything I did (and didn't) have so far, so I'll go with that for the time being.
The results showed up negative for all the coinfections. She said she feels the babesiosis was adequately treated but she's still concerned about the bartonella. She said I was very lucky that my neurologist tested me for all of this (she knows him and said he's very good and has been helpful with some of her Lyme patients). If I do have MS she is going to refer me to another neurologist in NYC that is experienced in Lyme-causation MS.
I also am extremely anemic, have mono, and have some kind of non-genital herpes. And based on my symptoms, she feels I have chronic neurological Lyme. Considering all of this, I feel pretty good right now!
Oh well...I am not happy about the MRI (I'm claustrophobic), and very not happy about IV antibiotics, but all in all I'm not doing bad.
Hi Writeart. I am glad your appointment went well.
What dose of Minocycline are you taking? It can cause dizziness in some people until your body adjusts. It did for me, but it went away in about two weeks.
Below is the breakdown of the Western Blot:
9 cross-reactive for Borrellia
12 specific for Bb
20 cross-reactive for Borrellia
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
Band 41 is often the first to show.
Babesiosis can cause anemia in some people. Does she want you to take iron?
Maybe you could ask the doctor if she can prescribe something to help when you have the MRI.
Good luck with your treatment! Be prepared for the herx.
The blood tests from Stonybrook were from Dr. Fein, which is why it surprised me. (My neurologist had tested me previously through Quest which is where I got the positives for Babs and Bartonella.)
Neurologist is Dr. Conigliari in Morristown.
I have seen children being treated in Dr. Fein's office, though she doesn't specialize in that. I think she might intimidate a child, though, because she has a very serious demeanor (my kids do better with doctors who act silly for them, but maybe that's just them).
Thanks for the explanation on the Western blot. I forget, which is recent infection vs. previous infection (re IgM and IgG)?
The minocycline is 100 mg. She wants me to start with one a day, see how bad I herx, and if it's not bad, I will switch to two a day.
She did prescribe something to help me with the MRI (she also told my husband he has to drive me, which I appreciate).
And yes, she prescribed iron for me too. Unfortunately, the pharmacy said that what was prescribed is no longer being manufactured, so they are trying to get a substitute and if they can't find one they'll call her back to get a different prescription.
She wants me off some of the other medication that I was prescribed before I was diagnosed, and also wants me to take a specific acidopholus, which I bought from her office (but she also told me other places it's available).
She will monitor my blood monthly, and makes herself available to answer questions via e-mail in between appts, which I liked.
Hi Write, Does this neuro specialize in lyme, or treat lyme? It would also be great to find a neuro that deals with lyme (you know LLMD's cost lots of $) It would be nice to find someone that takes insurance!
He does not specialize in Lyme. He does take insurance and he treated me for babesiosis, but only by CDC guidelines as far as I can tell. When my case started moving into the grey area he said I needed another specialist. He does help with the neurological symptoms of Lyme.
All of this is a confusing way of saying I wouldn't call him an LLMD but he was much more helpful than any of the other "regular" doctors I saw.
If I ever find an LLMD that takes insurance I'll let you know (I'm assuming I'm in more or less your same area).