lmkmip67 Posted September 27, 2011 Report Posted September 27, 2011 (edited) I am trying to figure out my 8 year old son's Igenex results. It states negative. Yet some look positive or unsure. the ones I don't understand are IgM 30 kDa + IgM 31 kDa IND IgM 39 kDa IND IgM 41 kDa ++ IgM 83-93 kDa IND IgG 18 kDa + IgG 30 kDa + IgG 31 kDa IND IgG 34 kDa IND IgG 39 kDa IND IgG 41 kDa ++ Thanks for any insight! Lisa Edited September 27, 2011 by lmkmip67
momcap Posted September 27, 2011 Report Posted September 27, 2011 Here's a link to an explanation of the lyme western blot test: http://www.lymenet.de/labtests/brenner.htm The strength of the band is indicated by + (low) to ++++ (high). IND means they see something very weak at that band. I guess it's like a half plus. ??? Here's a listing of information by bands that I copied from another lyme forum: List of Western Blot bands and explanations (from various sources) 9 cross-reactive for Borrellia 12 specific for Bb (Lyme) 18 flagellin fragment (Lyme) 20 may be 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. Can be an early band. 28 OspD. Specific for Bb (Lyme). [23-28] Potential for Central Nervous System (CNS) involvement. 30 OspA- substrate binding protein- common in European and one California strain. Check for mycoplasma. 31 OspA, specific for Bb (Lyme). 34 outer surface protein B (OspB); specific for Bb (Lyme). 35 specific for Bb 37 FlaA gene product- specific for Bb (Lyme). 38 cross-reactive for Bb 39 BmpA- a major protein of Bb flagellin; specific for Bb- Sometimes found in those with joint involvement. It is the most specific antibody for borreliosis of all bands. 41 flagellin protein of all spirochetes. This is usually the first to appear after a Bb infection and is specific for all Borrellia. Can be positive due to relapsing fever, oral spirochetes and syphilis. Flagella or tail protein. Flagella is used to move Borrelia burgdorferi from point to point. Many bacteria have flagella. This is the most common borreliosis antibody. 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis). Heat shock protein. This helps the bacteria survive fever. The only bacteria that does not have heat shock proteins is Treponema pallidum, the cause of syphilis. 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- Check for viral infections 60 cross reactive for all Borrellia 66 Oms66- cross-reactive for all Borrelia, common in all bacteria- Check for E-coli 83 high molecular mass protein. Specific antigen for the Lyme bacterium. This is the DNA or genetic material of Borrelia burgdorferi. It is the same as 93, based on medical literature. Laboratories vary in assigning significance to the 83 versus the 93 band. 93 an immunodominant protoplasmic cylinder antigen, associated with the flagellum. Possibly the same protein as in band 83, just migrates differently in some patients. NOTES: When reporting bands, the reporting laboratory marks bands with the following indicators of intensity: - Not present + Low ++ Medium +++ High +/- Equivocal = indeterminate (present, but not as intense as the "Low" reading) Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands.
sf_mom Posted September 27, 2011 Report Posted September 27, 2011 Some of the more specific Lyme bands present on your son's results are 39, 83 - 93, 18, 34. Couple those results with the lack of improvement from hdIVIG treatments and I would definitely be looking for an LLMD rather than spending any additional money on testing. Many LLMDs have preferences on tests and since your son has had recent hdIVIG alternative testing might be more appropriate. Some of the alternative tests that don't look for antibodies would be blood smear for Bartonella, Urine PCR or Dot Blot for Lyme, etc. You might also speak with Dr. B about a possible trial of combo antibiotics to see if you can't gain improvements prior to seeing an LLMD. Perhaps if he herx's and then starts improving you'll gain confidence in the treatment path. -Wendy
lmkmip67 Posted September 27, 2011 Author Report Posted September 27, 2011 Thanks so much! I am also wondering about asking Dr. B for a trial and then try to find an LLDM. What would a good combo be to ask about trying?
sf_mom Posted September 27, 2011 Report Posted September 27, 2011 Many have had success treating with Azithro/Omnicef combo all size appropriate dosages. Dr. B might even have his own preference on combo. What is he on now? -Wendy
lmkmip67 Posted September 27, 2011 Author Report Posted September 27, 2011 We are on Augmentin right now. we were on Azith/Omnicef last year for 3 or 4 months, but we were not exploring Lyme then. He did a bit better on that. But not enough that Dr. B thought to keep him on it. I would love to test something with Dr. B while finding a LLMD.
LNN Posted September 27, 2011 Report Posted September 27, 2011 These results are more "lymey" than my DS and our LLMD had no problem considering lyme despite the overall "negative' lab report. He feels IND does not mean negative for a band. "Something" made those bands change color. I personally see no need to re-test. You could instead put the money toward an LLMD appt. and get much more value for your money. While first appts can be months away, always ask to be put on a waiting list. Very often, you can get in in a matter of weeks if you're able to take the first available appt. When we first started on lyme, we had been on augmentin and Dr B added zith. That made no difference. LLMD then added bactrim and we saw a really positive response. But I think it depends on the child, the infection and the whole picture. I don't think there's any one "right" combo. Also, if you do add a second abx and hit upon a good combo, be prepared for a possible reaction called a herx (a worse before better response). You can add supplements for detox that can reduce herx symptoms.
philamom Posted September 28, 2011 Report Posted September 28, 2011 I agree! Skip the retest- put the expense toward a good LLMD. IND on band 83-93 is significant, at least with our LLMD.
philamom Posted September 28, 2011 Report Posted September 28, 2011 Some co-infections can be tested by Specialty Lab, which is covered by insurance.
lmkmip67 Posted September 28, 2011 Author Report Posted September 28, 2011 Some co-infections can be tested by Specialty Lab, which is covered by insurance. Is the Igenex mainly all components of Lyme? Or does it test some co-infections? I realize I need to understand this more. Sounds like I should also ask Dr. B about co-infections in more detail, though I believe he did a whole bunch of that testing in the beginning?? I should likely ask this over on the PANDAS board too.
aidansmom Posted September 28, 2011 Report Posted September 28, 2011 (edited) Some co-infections can be tested by Specialty Lab, which is covered by insurance. Is the Igenex mainly all components of Lyme? Or does it test some co-infections? I realize I need to understand this more. Sounds like I should also ask Dr. B about co-infections in more detail, though I believe he did a whole bunch of that testing in the beginning?? I should likely ask this over on the PANDAS board too. The results you give above are the western blot which has tested for Lyme. For a western blot they seperate the Lyme bacteria into parts and see if the blood has antibodies in it that react to the each of the parts. I just found this explanation and I thought possibly it could help you: http://lindaslymediseasejournal.blogspot.com/2008/08/western-blots-made-easy-by-dr-james.html I think technically your tests are negative but you have so many IND to Lyme specific (which are 18, 23, 31, 34, 37, 39, 83 and 93) bands that a Lyme doctor would take these very seriously if you have clinical symptoms, Igenex can also test for the coinfections but it is expensive, may not be covered by insurance and you may be just as well off testing for these though another lab (but I am not knowledgeable about this). Based on clinical history and these results I would go to a LLMD and let them determine if they think there are symptoms of coinfections and have them help you decide whether to run tests for coinfections and from which lab. Edited September 28, 2011 by aidan'smom
aidansmom Posted September 28, 2011 Report Posted September 28, 2011 We are on Augmentin right now. we were on Azith/Omnicef last year for 3 or 4 months, but we were not exploring Lyme then. He did a bit better on that. But not enough that Dr. B thought to keep him on it. I would love to test something with Dr. B while finding a LLMD. We did an augmentin, azith combo at first. I think augmentin partially because Aidan did have high ASO and anti-dnase b.
lmkmip67 Posted September 28, 2011 Author Report Posted September 28, 2011 That makes sense. I am going to call an LLMD today and get the ball rolling. I contacted Dr. B's office to ask about starting a combo now and to wait on re-testing for the time being.
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