Lyme bands - Western Blot - which ones matter

[Hopeny]

I am not a doctor and am summarizing information that is publicly available. I am not intending to provide medical advice. Lyme testing is complex and there seems to be a lot of misinformation out there so I hope this is helpful:

 

Many are probably aware that the Western Blot is an imperfect test, and can be used to correlate Lyme along with clinical symptoms by an LLMD but should not be used as a stand alone to rule in or out Lyme. The severely outdated CDC surveillance guidelines include bands that cross react with other bacteria, and exclude bands that are specific to Lyme. Pamela Weintraub does a very good review of the history of the Western Blot in her book Cure Unknown, I have no connection to the author, I just found the book extremely helpful in understanding the testing. The folks that developed the surveillance criteria had conflicts of interest in regards to patents, subsidies and Lyme vaccines, and unfortunately our children pay the price of this with thousands of missed diagnoses, my DD included. The majority of pediatricians, infectious disease specialists, rheumatologists and even PANDAS doctors are not aware of the issues related to the WB and use the CDC guidelines which are inadequate. if Lyme is suspected, in my own opinion an LLMD is necessary to evaluate the test and symptoms. I wish I had known this when my daughter first showed symptoms and we were told her test was "negative".

 

LLMD's generally consider 18, 23, 30, 31, 34, 37, 39, 83 and 93 specific for Lyme. 31 takes 1-2 years to even show up and indicates chronic Lyme. 83 and 93 are the DNA of the spirochete. if the listed bands are IGG or IGM, and are + or IND, they can correlate a clinical diagnosis of Lyme. It doesn't matter how many of these, or if they are IGG or IGM, or + or IND, they just look for these bands. According to a well known LLMD, there are no false positives with any of these bands present. The presence of bands fluctuates, it is postulated due to the mutation of the spirochetes into the 3 forms, so you will see different results at different points in time. In my DD's case I am not bothering to re-run any of the tests which were both CDC and LLMD positive in our case, we are just going by symptoms.

 

Standard labs do not report 7 of the 9 IGM relevant bands and 3 of the relevant IGG bands. Standard labs do report bands 28, 41, 45, 58 and 66 which cross react with other bacteria and are not considered relevant to a Lyme diagnosis. So there is a problem with under reporting important bands and over reporting irrelevant bands. Standard labs also only look for some of the Bb species so will miss potential infection. Two labs that are generally relied on are Igenex and SUNY Stony brook, Igenex reports all relevant Lyme Bands and Stony Brook will report all bands but it MUST be requested on the order, it is easy to miss requesting this on the order. Stony Brook only tests for Bb and does not test for co-infections. Labs that are also used for co-infections but not Bb are Sonomoa county for Babesia and Galaxy Labs for Bartonella. Advanced Labs is offering a new type of test that seems very promising which actually looks for Spirochetes in the blood.

[Dedee]

Just to add to what Hopeny is saying, I would like to discuss the difference in a positive band and an indeterminate band. This was very confusing for me when we got my daughters results. My daughter had two positive bands which were 18 & 41 so she was considered negative by CDC. However she also had other bands that were indeterminate which were 39,83 93. Our LLMD considers all indeterminate bands positive. Our doctor explained like this....An indeterminate band is simply a band that shows up but is not dark enough to be considered positive. Sort of like a pregnancy test. There is no such thing as being a little bit pregnant. If there is a line showing up that it was detected then it's positive. Therefore by ILADS standards my daughters test was extremely positive. And believe me if you spent much time with my daughter you would agree. Unfortunately, because the first person to read my daughters result was not an LLMD we delayed treatment for a while before seeking out an LLMD. I regret that time. Anyway, just want to throw in about indeterminate bands because it is somewhat confusing. Good luck to anyone out there fighting this horrid illness. I'm sure it can be over come!

 

Dedee

[philamom]

My daughter received a positive result from the new culture with Advanced Lab, if anyone has any questions. We ran it in December of 2011. They sent us a picture of the spirochetes in her blood sample.

 

A speaker from the lab will be at a lyme meeting I hope to attend Monday. I will post if any new information is shared.

[trintiybella]

So it looks like my child FOR SURE has lyme, right?

Says IGG results

18 kDa -

** 22 kDa -

28 kDa -

30 kDa +

** 31 kDa -

** 34 kDa -

** 39 kDa IND

** 41 kDa ++

45 kDa -

58 kDa -

66 kDa -

73 kDa -

** 83-93 kDa -

Is there suppose to be a IGG or IGM listed next to the bands? Or are the results for the IGG and IGM somewhere esle on the report?

Edited April 26, 2013 by trintiybella

[trintiybella]

DeDee - does that mean the "plus signs" after the bands don't mean anything??? and why do some bands have one "+" sing and some bands have two "++"???? Ugh.

 

....And what are the asteriks for????? Do they mean anything????

[P_Mom]

Trintiybella,

 

That is a negative test result. Doesn't it say negative on the report? You are giving IGG results...there should be another one, an IGM one. But, anyway, the asteriks are marking the more Lyme "specific" bands, however some are not specific to Lyme, such as 41. The plus or minus next to the band is indicating if it was positive or negative. One plus is a low intensity result.....then it goes up from there.....2 pluses indicates a more intense response, and so on....it goes up to 4 pluses. You have two positive bands, low intensity...both non-specific for Lyme....that is a (very) negative test result. FWIW.....IGENEX considers IND bands to be negative. So, if you had all band show IND, the company would report a negative result. Just stating facts. BTW, I have not been on here for a very long time and the new format is something foreign to me. I can't find your pm! I'll keep looking.

[trintiybella]

P.Mom. This is crazy. I was told she had lyme and bartonellal Here are the IGM results:

 

18 kDa -

** 23-25 kDa -

28 kDa -

30 kDa -

** 31 kDa -

** 34 kDa -

** 39 kDa -

** 41 kDa +

45 kDa -

58 kDa -

66 kDa -

** 83 kDa-

 

Also...what is the "41" band if its not specific to lyme?

I am not sure where the "PM" goes either. LOL I will try to figure it out. Can you pm me and I will try searching for it?

Edited April 27, 2013 by trintiybella

[LNN]

Trinity - Band 41 tests for proteins made by bacteria that have flagella - little tails that help them swim. Lyme spirochettes have flagella. But so does H. Pylori, syphilis and a few other bacteria families. So it's tested because lyme makes this marker but it isn't ** because it isn't unique to lyme only.

 

The 39 IND IgG band suggests your daughter's body has seen lyme bacteria at some point but it may have been awhile ago and there aren't enough antibodies in her body to turn the band dark enough to be considered positive.

 

Based on this lab test only, the IND 39 is the only one that makes me go "hmmm". It is not a test for bartonella. That would be a separate blood test.

 

As for treatment, if you told me your daughter has a history of strep and her symptoms match up to the timing of strep illness, I'd lean toward Pandas treatments. If she has lyme symptoms that don't overlap with Pandas symptoms - things like muscle pain, joint swelling, episodes of brain fog not associated with illness, or anger that doesn't come from OCD riutals being interrupted...then treating for lyme might be worth a trial (and by that I mean using a combo of abx for lyme vs. using only one abx for Pandas).

 

My daughter had a similar Igenex test - nothing screamed lyme except an IND 39 and 41+++ yet she'd never had strep. Her symptoms, while they did get worse with sinus infections, didn't match Pandas entirely. She had a lot of gut distress, GERD, body pain and she didn't have true OCD - she had anxiety but no compulsions/rituals she had to do. Using one abx didn't help entirely. So we treated her with a combo of abx (azithromycin plus bactrim) for 8 months and her lyme-like symptoms disappeared. Haven't had GI issues since. Did my daughter have lyme? No idea. But the combo abx helped a lot and that's what really mattered.

 

There's another blood test you can consider - a C3d test that looks at how activated the immune complex system is. Dr B was the first doctor who tested my DD for this and then I asked our lyme doctor to continue to track it. Normal range at the time was below 8 (it's now below 20something). My DDs results went from 30 to 53 to 93 over the course of the year she had her worst symptoms. We started at the LLMD (lyme literate MD) when she was in the 90s and after using the combo abx, her C3d levels dropped to 17. I have no idea if she had lyme or some other infection. But I do know combo abx did the trick and her C3d improved as her behaviors improved. This wasn't the only puzzle piece for her but we used C3d as a guide to what the immune system was reacting to.

 

So I agree with PMom that these test results don't scream lyme to me. But I also think the label is less important than how your daughter responds to treatment. I believe you've said you've seen no improvements so far. Have you tried multiple antibiotics in different combos? If yes, I too would look beyond lyme (tho I'd also make sure you tested specifically for bartonella) and look for other causes and/or a different doctor - it doesn't sound like you have a lot of confidence in your present doctor?

 

FWIW - there are also other causes of neuropsych symptoms beyond strep and lyme. After treating for lyme, my daughter's remaining issues were resolved by looking at her genetics and finding she had trouble with certain metabolisms of specific vitamins/proteins. We addressed these with specific supplements and she's in the best place she's ever been - and off abx. (knock wood).

[P_Mom]

Wow...IGM is also very negative. Only 41 showing which is very common in general population, largely due to "normal" oral flora. You have negative labs for Lyme...both IGG and IGM. This is not a test for Bart....was there other testing done?

[trintiybella]

Spoke my child's doctor (One of the top LLMD's) and he said....my child shows serological evidence of exposure to lyme B. and Bartonella H. as seen in Igenix western blot, on IGG positive band number "30" as seen up above. Just wanted to let you guys know. Ugh!

[rowingmom]

Our LLMD would consider the IND 39 (lyme specific) to be a positive indication of borellia (lyme) infection.

[Dedee]

Our LLMD considers an Indeterminate band to be positive. That being said, your daughters IgG has one lyme specific band that is positive. Also if you read your report, Igenex says that "Indeterminite double starred bands in a negative report may indicate clinical significance". I take that to mean you would use that information in coorelation with your daughters symptoms as LLM mentioned. Lyme is a clinical diagnosis. That is why we take our children to see physicians who have treated hundreds of lyme cases and viewed hundreds of lyme results and compared them with clinical history to come up with a diagnosis. It would be great if lyme were like strep or Myco where we could do a swap or run a titer and its either positive or negative. Unfortunately this is not the case. It's not a black and white diagnosis and that's hard when grey isn't your favorite color.:-) I can tell you are really struggling with this. You need to decide how much you trust your physician, and use your Mommy instincts. I have gotten a lot of flack from a couple of members in my family because they believe my daughter couldn't have lyme because we live in the south and one of my nephews who is in medical school has convinced them that lyme can only be gotten in the north east. Whatever! This is a hard road. I'm sorry you're having such a difficult time.

 

Dedee

Edited May 1, 2013 by Dedee

[mama2alex]

My daughter received a positive result from the new culture with Advanced Lab, if anyone has any questions. We ran it in December of 2011. They sent us a picture of the spirochetes in her blood sample.

 

A speaker from the lab will be at a lyme meeting I hope to attend Monday. I will post if any new information is shared.

 

I just received a positive culture from Advanced Labs (on myself) last week. I've read the Eva Sapi study, and an article quoting Dr. Burrascano, but am wondering if you learned anything interesting at the Lyme meeting Monday. From what I can tell, this is far and away the most solid test yet, with no false positives in the study and only 6% false negatives when compared with CDC surveillance results.

[Orion]

The diagnosis of Lyme is a clinical decision.

 

According to Dr. J the Western Blots can only confirm a suspicion of exposure to the Lyme Bacterium. The WB can not be used to definitively say who has and does not have the disease.

Edited May 2, 2013 by Orion

[philamom]

 

My daughter received a positive result from the new culture with Advanced Lab, if anyone has any questions. We ran it in December of 2011. They sent us a picture of the spirochetes in her blood sample.

 

A speaker from the lab will be at a lyme meeting I hope to attend Monday. I will post if any new information is shared.

I just received a positive culture from Advanced Labs (on myself) last week. I've read the Eva Sapi study, and an article quoting Dr. Burrascano, but am wondering if you learned anything interesting at the Lyme meeting Monday. From what I can tell, this is far and away the most solid test yet, with no false positives in the study and only 6% false negatives when compared with CDC surveillance results.

The speaker has been postponed until the fall. They are in the midst of 2 validations studies and have put a hold on all public speaking engagements until completed.