Igenex Lab Results - help reading

[momaine]

Can you help me read these results.

My dd's Igenex results read as follows:

 

Lyme IGg Western Blot

**31 kda IND

**41 kda ++

58 kda +

 

IGm western Blot

**39 IND

**41 IND

 

Now a bit of history. She has been being treated for PANDAS for one year. She has had 4 HDivig. She does well after ivig but twice has had subsequent sinus infections while on Azith. If she stays on Azith as well as Augmentin, she seems to continue to improve, but we're just figuring this out and don't know long term. She still reacts with PANDAS symptoms when she has a virus and even when she was on both antibiotics but was around someone (who was also on an antibiotic) who had a current sinus infection even though she did not get a sinus infection that time. (sent her into a downward spiral but she recovered after a week and another IVIG)

 

The IGENex tests say negative but from what I'm reading that may not be the case??? Thanks for your help.

[sf_mom]

Your Daughter results has some very Lyme specific bands presents and should be seen by the best possible LLMD you can find local to you. The progress she makes with the multiple antibiotics is a potential clue that Lyme might be the underlying issue. Azithro/Augmentin is a common combo for Lyme treatment. She will also need to be appropriately checked for co-infections.

 

Dr. Ann Corson who is a pediatric Lyme specialist states the following:

 

"A positive WB need only show one speces-specific band to demonstrate exposure to Bb therefore confirming a clinical diagnosis of Lyme disease.

 

These species-specific bands are: 18, 23-25, 31, 34, 39, 83-93 kDa"

 

Children with Lyme Disease often see rapid improvement (minus herxing response) within the first 4 to 6 months of starting treatment.

 

Good Luck, Wendy

[LNN]

I agree with Wendy that your best bet is to review this with an LLMD. Another mom in Maine has had trouble finding someone local and is headed to CT next week for an LLMD appt. but you can check www.ilads.org (go to the contact us tab and send them an email asking for a referral).

 

Our personal experience- DS had an overall negative Igenex report b/c he didn't have enough positive bands. But the ones he had were lyme-specific. After 2 years of incomplete recovery using Pandas protocols (incl. pex and IVIG), we've seen huge, huge improvements with lyme protocol. The change happened when we added bactrim to the augmentin and zith combo. I used to blame exposure for setbacks too. Now that he's being treated for lyme, he no longer has setbacks when people around him are sick. Obviously none of us are doctors, but I think if you're still struggling after 4 ivig's, it's worth investigating. If you find you have to travel to southern new england, PM me for some doctor info (I'm in northern CT).

[momaine]

Thank you both for your responses. I will certainly investigate this avenue and I suspect as usual, we'll be traveling to CT to find a doctor. Who would you recommend? I do know the other mom from Maine and I'll be waiting anxiously to hear what the doctor tells her. Although her son has more Undetermined bands than my daughter, their results are similar.

 

 

Angela

[philamom]

momaine- Igenex also states at the bottom of their report "presence of only one double starred band or indeterminate double starred bands in a negative report may indicate clinical significance". My daughter also had 4 HDivig and still reacts with PANDAS/PITAND symptoms when she has a virus or is exposed to strep. But her flairs don't last as long now that she is being treated with the correct antibiotics. Actually, my daughter just started with symptoms of a cold two days ago, and I have yet to see an increase in behavorial symptoms (keeping fingers crossed). This would be the first time in almost two years she hasn't reacted to a virus!

[momaine]

momaine- Igenex also states at the bottom of their report "presence of only one double starred band or indeterminate double starred bands in a negative report may indicate clinical significance". My daughter also had 4 HDivig and still reacts with PANDAS/PITAND symptoms when she has a virus or is exposed to strep. But her flairs don't last as long now that she is being treated with the correct antibiotics. Actually, my daughter just started with symptoms of a cold two days ago, and I have yet to see an increase in behavorial symptoms (keeping fingers crossed). This would be the first time in almost two years she hasn't reacted to a virus!

Can each of you tell me who you see for a doctor and what drugs your children are on? Philamom, how long has your dd been being treated for lyme and who is your pandas doc. Are you all working with multiple doctors? How do I even begin to start this journey? I guess I'll call and talk to her pandas doc and see what he thinks.

[philamom]

momaine- Igenex also states at the bottom of their report "presence of only one double starred band or indeterminate double starred bands in a negative report may indicate clinical significance". My daughter also had 4 HDivig and still reacts with PANDAS/PITAND symptoms when she has a virus or is exposed to strep. But her flairs don't last as long now that she is being treated with the correct antibiotics. Actually, my daughter just started with symptoms of a cold two days ago, and I have yet to see an increase in behavorial symptoms (keeping fingers crossed). This would be the first time in almost two years she hasn't reacted to a virus!

Can each of you tell me who you see for a doctor and what drugs your children are on? Philamom, how long has your dd been being treated for lyme and who is your pandas doc. Are you all working with multiple doctors? How do I even begin to start this journey? I guess I'll call and talk to her pandas doc and see what he thinks.

We use the same PANDAS doctor. In July, after my daughter's 3rd ivig, we received a positive Igenex western blot. She was placed on zith 250mg for the lyme. In Sept, we took her to Dr. J in Ct and he added Amox daily and Tindamax on the weekends. After some minor herxing (compared to many here) and some reactions to illness, she was doing pretty good by Halloween. Then we did another ivig and lost much of the improvement we've seen. After 4 weeks, things began to settle, until I took my daughter for a dental cleaning...by the time we got home she was flaired again. 19 days ago, we added Minocin to her daily regime and are now once again seeing improvements. So yes, we are working with both doctors. At this time, we are going to postpone further ivig's until later into treatment (if needed). Only, because, in our case it caused too much of a herx with her last infusion. Some are doing better treating with abx and ivig, some are not.

[momaine]

momaine- Igenex also states at the bottom of their report "presence of only one double starred band or indeterminate double starred bands in a negative report may indicate clinical significance". My daughter also had 4 HDivig and still reacts with PANDAS/PITAND symptoms when she has a virus or is exposed to strep. But her flairs don't last as long now that she is being treated with the correct antibiotics. Actually, my daughter just started with symptoms of a cold two days ago, and I have yet to see an increase in behavorial symptoms (keeping fingers crossed). This would be the first time in almost two years she hasn't reacted to a virus!

Can each of you tell me who you see for a doctor and what drugs your children are on? Philamom, how long has your dd been being treated for lyme and who is your pandas doc. Are you all working with multiple doctors? How do I even begin to start this journey? I guess I'll call and talk to her pandas doc and see what he thinks.

We use the same PANDAS doctor. In July, after my daughter's 3rd ivig, we received a positive Igenex western blot. She was placed on zith 250mg for the lyme. In Sept, we took her to Dr. J in Ct and he added Amox daily and Tindamax on the weekends. After some minor herxing (compared to many here) and some reactions to illness, she was doing pretty good by Halloween. Then we did another ivig and lost much of the improvement we've seen. After 4 weeks, things began to settle, until I took my daughter for a dental cleaning...by the time we got home she was flaired again. 19 days ago, we added Minocin to her daily regime and are now once again seeing improvements. So yes, we are working with both doctors. At this time, we are going to postpone further ivig's until later into treatment (if needed). Only, because, in our case it caused too much of a herx with her last infusion. Some are doing better treating with abx and ivig, some are not.

Thanks so much. Its a difficult journey no matter how you look at it. Best of luck to you all.