Lyme? What do you think?

[Christianmom]

I have spoken with a couple of you concerning my son, 16, and wanted to post all of his testing results in hopes of getting as much advice as possible before I see the lyme doctor on June 22. Just got IgeneX testing back--complete western blot panel, complete co-infection panel. Please note that my son has been on antibiotics (mainly Biaxin, 1000 mg.) for 7 months. Not sure if this may have affected his results. Also, my son is and has been 100% healthy and physically and mentally capable (capable of doing anything, yet his OCD keeps him from actually doing anything in a normal manner). He was diagnosed with PANDAS by Dr. T last October after sudden-onset totally-debilitating OCD and high strep titers. OCD is and has been his only symptom. A high ASO and DNase were the only signs of strep--no strep symptoms, not even a sore throat. Has never had a tick bite that I know of. Has passed every immune test given him (IgG, IgA, IgM, IgE, IgG subclasses, CBC, immune complex panel, t-cell phenotyping (found one low value out of the many tested)). Seems to be able to create antibody titers fine--ASO, anti-Dnase B. Has no fatigue, gut issues, or pain of any kind. Is the healthiest child I have--doesn't even have allergies, food or otherwise. My son has never had IVIG or plasmapheresis. Antibiotics and steroids have helped him handle his OCD a little better, but in no way have "cured him."

 

Based on the below test results, should I ask the lyme doctor to treat my son even though the IgeneX results seem negative. And should I ask him to treat for lyme and bartonella or just lyme? What would you do? Do you think the lyme doctor will refuse to treat when he sees these results? (He is a ILADS trained doctor.) If he treats, how long until I will see results that will convince me that my son definitely has lyme/coinfections?

 

10/21/10 -- LabCorp Lyme Western blot: IgG P23, P66; IgM P41

2/02/11 -- LabCorp Western blot: IgG P66; IgM negative

3/10/11 -- LabCorp Western blot: IgG P66; IgM negative

3/3/11 -- LabCorp coinfection--bartonella, ehrlichia, babesia -- all negative

5/11/11 -- IGeneX Western blot: IgG P41 IND, P58+; IgM P41++, P39 IND

IGeneX complete coinfection panel -- all negative

 

Thank you!

[MichaelTampa]

I had way more symptoms than your son. But I did have noticeable but unsatisfying improvement (with OCD and other symptoms) from biaxin. I had band 41 positive and band 39 IND for both igg and igm, and everything else negative. I also had very low CD57, and negative for some coinfections. My llmd said the most telling thing of every test I brought him was the IND for band 39, which he considered very specific for lyme (some study does back 39 up as the most specific for lyme). He considers IND as a positive, just a weak positive (a half star or half plus, if you will).

 

So, regarding what your llmd will say, of course it depends on the doc, but some llmd docs will consider the igenex western blot a positive one.

 

I do think lyme treatment at this point is the next logical step of something to try. The response to biaxin shows something infection related is going on, the western blot indicates lyme may be a part of it ... why not try some abx more effective at treating lyme and see what happens?

 

Keep in mind, at least for most people with lyme, there are other aspects to successful lyme treatment besides the antibiotics. Heavy metals and parasites/worms are excellent things to deal with as well. Regarding treating lyme plus bartonella versus just lyme, with this limited list of symptoms, I think I would be inclined in the beginning to go with the llmd's guess whether bartonella should be treated in the beginning. Mine diagnosed me with bartonella initially, but did not treat it until several months later. And then much later than that we treated for babesia as it seemed like the thing to do at the time (correctly so).

[Christianmom]

Thank you so much MichaelTampa for your helpful reply! Forgot to post my son's CD57 test result. It was 100. I would appreciate anyone's comments on this as well. The test was done by Lab Corp.

[ShaesMom]

I'm going to share with you some information I received from our LLMD that he sent with our IgeneX tests results. The name of the document is "IgeneX Western Blot: Better by Design"

"39kDa is from the inner part of the Borrelia burgdorferi bacteria called the endoplasmic reticulum. It is the reddest flag of the fifteen antibodies on the blot. Other bacteria that are like the Lyme bacteria do not even have the genetics to code for this, much less produce it. The 39 appear to be unique to "Lyme" bacteria. It has even been suggested that a 39 by itself is enough to be a positive test."

 

41kDa is the flagella or tail of the Bb, and that is how it moves around, by moving the flagella. It is the most common Lyme antibody of all. Even though different bacteria (E. Coli) may have flagella and possibly cause a false positive 41 test results, there is a 90% correlation with a 41 and antibiotics helping.

 

58kDa is a heat shock protein that helps the Lyme bacteria survive fever. It was shown at the international borreliosis conference held in Germany in 1999 to be a significant borreliosis antibody.

 

Research on 700 borreliosis patients and Western blots showed that the IND antibody band are just as significant as the +'s. The IND means that the intensity or darkness of the antibody band is light. But they are seeing a little bit of antibody because they do not have any trouble calling many of the antibodies negative or absent.

 

Again, this is taken directly from information given to me by our LLMD who has been txg Bb for 20 years. Hope it helps!!

 

Your son would be positive according to his standards.

Edited June 1, 2011 by ShaesMom

[Christianmom]

I'm going to share with you some information I received from our LLMD that he sent with our IgeneX tests results. The name of the document is "IgeneX Western Blot: Better by Design"

"39kDa is from the inner part of the Borrelia burgdorferi bacteria called the endoplasmic reticulum. It is the reddest flag of the fifteen antibodies on the blot. Other bacteria that are like the Lyme bacteria do not even have the genetics to code for this, much less produce it. The 39 appear to be unique to "Lyme" bacteria. It has even been suggested that a 39 by itself is enough to be a positive test."

 

41kDa is the flagella or tail of the Bb, and that is how it moves around, by moving the flagella. It is the most common Lyme antibody of all. Even though different bacteria (E. Coli) may have flagella and possibly cause a false positive 41 test results, there is a 90% correlation with a 41 and antibiotics helping.

 

58kDa is a heat shock protein that helps the Lyme bacteria survive fever. It was shown at the international borreliosis conference held in Germany in 1999 to be a significant borreliosis antibody.

 

Research on 700 borreliosis patients and Western blots showed that the IND antibody band are just as significant as the +'s. The IND means that the intensity or darkness of the antibody band is light. But they are seeing a little bit of antibody because they do not have any trouble calling many of the antibodies negative or absent.

 

Again, this is taken directly from information given to me by our LLMD who has been txg Bb for 20 years. Hope it helps!!

 

Your son would be positive according to his standards.

[Christianmom]

Thank you so much ShaesMom, very,very helpful information. Do you mind if I ask who your doctor is? Also, do you (or anyone) have any idea why the P23 and P66 from the original western blot are no longer showing up?

[lfran]

My son was mostly p58 and when I did a lot of internet research, I found that that band shows up a lot in Europe and some European labs consider it very specific for Lyme.

I'm going to share with you some information I received from our LLMD that he sent with our IgeneX tests results. The name of the document is "IgeneX Western Blot: Better by Design"

"39kDa is from the inner part of the Borrelia burgdorferi bacteria called the endoplasmic reticulum. It is the reddest flag of the fifteen antibodies on the blot. Other bacteria that are like the Lyme bacteria do not even have the genetics to code for this, much less produce it. The 39 appear to be unique to "Lyme" bacteria. It has even been suggested that a 39 by itself is enough to be a positive test."

 

41kDa is the flagella or tail of the Bb, and that is how it moves around, by moving the flagella. It is the most common Lyme antibody of all. Even though different bacteria (E. Coli) may have flagella and possibly cause a false positive 41 test results, there is a 90% correlation with a 41 and antibiotics helping.

 

58kDa is a heat shock protein that helps the Lyme bacteria survive fever. It was shown at the international borreliosis conference held in Germany in 1999 to be a significant borreliosis antibody.

 

Research on 700 borreliosis patients and Western blots showed that the IND antibody band are just as significant as the +'s. The IND means that the intensity or darkness of the antibody band is light. But they are seeing a little bit of antibody because they do not have any trouble calling many of the antibodies negative or absent.

 

Again, this is taken directly from information given to me by our LLMD who has been txg Bb for 20 years. Hope it helps!!

 

Your son would be positive according to his standards.