Got an actual copy of my WB test results.

[Erin]

Here's what was reported on my WB test results... I'm wondering if it was more "equivocal" than "negative". I bolded where it says that I have TWO bands present. I'm curious if those bands could possibly mean that I might have Lyme, but just not showing enough bands for the stupid doctors to say "yes, you have Lyme".


Lyme IgG West Blot - Negative

Result Comment:

Band(s) present: 41, 23kDa
(insufficient number of bands for positive result)

Test Information: Borrelia Burgdorferi Ab, IgG Western Blot.

IgG positive: Any 5 of the following 10 bands 18, 23, 28, 30, 39, 41, 45, 58, 66, or 93kDa.

IgG Negative: Any pattern that does not meet the IgG positive criteria.


Lyme IgM West Blot
Result Comment:

Band(s) present: NONE
(insufficient number of bands for positive result)
Test information: Borrelia Burgdorferi Ab, IgM Western Blot
IgM Positive: Any 2 of the following 3 bands: 23, 39, or 41 kDa.

IgM negative: Any pattern that does not meet the IgM positive criteria.
Performed at Associated Regional
Salt Lake City, UT.

[lymebytes]

Hi Erin. I am glad you got a copy of the test.

Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
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

The IgM tests for a more recent infection, the IgG a longer standing one. Band 41 is often the first to show and yours is positive. Band 23-25 is a Lyme specific band and yours is positive. I think this is significant. It will be interesting to see what the test results will be from IgeneX. They use more sensitive testing and list more bands on the Western Blot.

The CDC requires several bands to show for the test to be positive; however, many people who have Lyme do not have this many bands. Lyme doctors often look at which bands show, some are specific for Lyme.

[Erin]

Ok.. I think I can do a couple of things to see if I can get that IgeneX test done.

I'm writing an email to the surprisingly willing to help NP at the MS Clinic and see if she'll help me.

Or.....

I can call my regular doctor and see if he'll humor me and do the blood draw for me.

Or...

I'm going to a Quack-in-the-box free standing, walk-in, non-emergency clinics. Tell them I had a couple of tick bites and a rash "recently" (7 years is fairly recent, isnt it? ;) ) and that I want them to do a blood draw and send it to Igenex's lab for a Western Blot. (this is probably what I'll end up doing)

I talked to my aunt (an NP) tonight, and she's a friend of the NP at the MS Clinic. She said she'd help me write an email to her friend with wording that will hopefully help me convince the NP to assist me in finding a LLMD.

I think I might want links to Lyme info that might help back me up. (something about 2 Lyme specific bands being very significant and a good reason to follow up on more Lyme testing from Igenex) My aunt said that this NP is usually VERY open to learning new stuff and that she'll probably be very helpful in getting all this figured out.

This is very stressful.

I just thought back to all the times I've been on antibiotics (cipro or biaxin) this year. I think I had flares in my symptoms almost every time I've been on antibiotics. Weird that I didnt seem to have problems when I was on macrobid (I had a bunch of UTI's this year, or just a very long one)

Maybe all those antibiotics could be the reason the WB showed those two bands? The antibiotics could have killed just enough bacterias that those bands popped up... Think it's possible?

Ok...I'm feeling a wee bit better emotionally about it. Last night and today I was feeling a LOT overwhelmed with trying to figure out how to ask the NP how to help me.

[Buttons2]

Erin, everyone here can truly understand what you are going through right now. I would consider these tests results "good news". And you have several options for getting the Igenex tests done now-and a definite reason to do so!

I'm sure you realize by now that the co-infections are even worse than the Lyme itself? You need treatment for every little critter taking over your body.

Are you eating low-carb only? Everytime you consume sugar you are feeding these little beasties.....chose to starve them! Not to mention the yeast ya don't need that too! Start researching the different pro-biotics so you will be armed with info when you see which ever doc begins treatment.

I think there is a LLMD in MO,not too far away from you perhaps? The waiting list might be very long,I'm not certain. Others' here can probably help with the doctor situation,I only know the closest one to WA is in Hope,BC.

Here's something to consider: if you connect with the willing NP,she could set up phone consultation with a LLMD for the right meds. Other people go this route because travel is not an option or they need the help ASAP & can't wait to be on top of any waiting list. Alot of treatment is trial & error as you know, so you might give this some thought.

Good luck,Buttons
P.S. When do you get the results on the Devic's disease test?

[Erin]

I got the results of the Devic's disease test and it was totally negative :D

It's weird...finding those two little bands on the results of the WB for Lyme test really surprised me. Even tho I wanted them to do the test, I never expected to see bands 23 and 41.

I woke up feeling icky this morning (ate at Cabela's Sporting Good's in-store restaurant last night...that may have been a mistake) so I'm not going anywhere today.

I go see my regular neuro on wednesday. I'm writing an email to the NP at the MS Clinic today, but I'm going to have my aunt check the email for me so that I can make sure it doesnt sound like I'm a panicked hypochondriac before I email it.

I am thinking of telling the neuro that I want to have the WB done again thru Igenex. I know he wont be really receptive of it. He's one of the best (and OLDEST) neuros in Omaha, and he might not be as open to stuff, but I'm hoping that if I explain to him that I want to make totally sure what is wrong with me before I attempt any type of treatments, maybe he'll humor me.

He's a very smart guy, and I think if I can calmly explain stuff to him he might listen to me....hopefully (might just take the letter I'm writing to the NP with me so I can just hand him the letter and not freak out trying to explain things verbally)

I'm trying to not totally believe that I have Lyme, just so that I dont get my "hopes" up that it's not MS. Altho, I think I do now have a lot of evidence that Lyme is possible now. I just want them to make certain exactly what is wrong with me. I just dont know if I can explain things to the neuro without breaking down into tears or something. (a sad commercial can make me cry, explaining a health problem that could possibly end up lifethreatening if it gets into my heart scares me to death and I'm pretty sure the waterworks will start up)

I'm just hoping one of my doctors will help me.

[Erin]

Ok. I called my regular doctor's office, and asked the nurse to see if one of the doctors there would refer me to an infectious disease specialist. (yes, I know I need to see a Lyme specialist) I'm hoping that the doctor will know of a Lyme specialist.

I'm still waiting for them to call me back. Wish they'd hurry up.

[Erin]

I got tired of waiting. Called my doctor's office back.

The nurse called the office of the doctor that one of my regular doctors suggested. That office doesnt take care of patients with Lyme. (argh!!)

And she just now called me back about the other office that the doctor recommended. That office closed about 10 minutes ago, so they have to wait till tomorrow to call them.

argh!!!! Why does this have to be so difficult? It'd be nice if I was able to call up a doctor, tell them that I suspect that I could have Lyme disease and get an appointment.

I wonder how long it'll take before I go insane or get a referral? Which will come first...the insanity or finding a Lyme specialists?

[RuthHinWV]

Ok. I called my regular doctor's office, and asked the nurse to see if one of the doctors there would refer me to an infectious disease specialist.
Hi Erin, Let me tell ya, do NOT waste your precious time & money on an infectious disease specialist. Those guys couldn't diagnose a gray hair!!!

Actually, the 2 LLMD's I've been to are just regular docs who happen to know how to treat Lyme; they educated themselves on the disease. My past LLMD was internal medicine & my current LLMD is in family medicine. You might try finding an internal med's doc who treats Lyme. I got lucky with the current LLMD because she has Lyme also & that spurred her to research & educate herself on the disease.

Hope this helps!! Ruth

[Erin]

Ok. I can ask my aunt and my dad (they're both nurses) and see if they can talk to the internal medicine doctors that they know and see if anyone knows anything about Lyme.

My hometown has close to 400,000 people (or more, they just annexed a town) in it. You would think that in a city of close to half a million, there would be at least one doctor who knows something about Lyme disease!!

This is so annoying!

I'm beating a dead horse to death, while beating my head against my computer desk, while waiting for Heck to freeze over. Hopefully when I do get to contact an LLMD they wont be a quack or someone who follows the CDC criteria for the tests.

I called that LLMD in Missouri today, but everytime I called, I got the "we're busy" message on their office phone and shot straight to voice mail. No one's called me back from there yet.

[Buttons2]

Erin, I understand your anxiety right now....take some deep breathes & try to let life flow as it will.....

I believe you are on the right path now....that's a good start!

Second what Ruth said,I've been researching Lyme for years now & everything indicates the infectious disease doctor's are worse than no doctor at all!

Omaha might have a huge population but here's the kicker.....the mid-west is the least likely area to have ticks that carry Lyme!

I also think there's a doc in Denver or somewhere near there,not sure.

One reason docs don't want to learn about & treat Lyme disease is that it's supposedly reportable to the CDC,paperwork! Who wants to deal with that? In my little corner of the world I know of 4 people diagnosed with Lyme,there's NOTHING on the county health dept site about it!

You are smart in debating about talking this over with your doc.....I've been down that road with several docs over the years,they don't want to hear it!

Get your blood off to Igenex, it will take several weeks to get the results anyways....more waiting.

And be sure to count your blessings everyday-especially for having family supportive of you! And please pay attention to what I said about diet.....

Later,Buttons

[Erin]

I'd love to get my Igenex test done, but I cant find anyone willing to draw the blood for me. (I dont know why they wont)

I'm going to my neuro tomorrow...I think I'll drag along my Igenex test kit with me just in case he's willing to do it. (well, his nurse will have to do the draw, my neuro is a million years old, and he's got arthritis in his hands)

I'm going to just try to talk to him about the possibility of Lyme and see if he'll listen to me. I'm going to ask him about the WB test that the MS Clinic did for me. I want to know why it's showing 2 Lyme specific bands if they think I dont have Lyme.

I did get a call back from my regular doctor this morning (at the buttcrack of dawn! why do they insist on calling so early?) They managed to get me an appointment with an internal medicine doctor who's also an infectious disease doctor. I dont think it'd hurt to at least talk to that doctor...he/she might know something...hopefully. The appointment isnt until July 19th, so I can always cancel the appointment if I want/need to.