not another one..I hope

[norcalmom]

I'm just visiting from the pandas board (I hope). We got back Igenex test results for my son. Did whole panel and co-infections. I am going to discuss with the doctor on Wednesday, but thought I would throw it out to all of you to see your thoughts so I am prepared for that conversation.

 

IGM western Blot, he had one 39+ and 41 IND. all others negative.(only needs these two bands positive to be positive...but suggests exposure to B. burgdorferi...which he comes up negative for.

 

IgG western Blot (31) IND and 41 ++

 

A phagocytophilim - 1:20 (igm) lowest possible positive titer

 

A phagocytophilim - negative (igg )

B burgdorferi Negative (igg and igm)

B. microti - Negative (igg and igm)

babesia fish - negative

B henselae negative (igg and igm)

e chaffeeensis negative (igg and igm)

 

AND my pitands son also cam back very high for mycolplasma pneumonaie...he's been on full does azithromycin for over a year and had ivig (worked great...but still not 100%) 4 months ago. his IgG was 2430...but IgM was negative..not sure what that means either.

 

Any thoughts appreciated!

[Suzan]

My dd9 is going to be treated for lyme based on her Igenex results and clinical diagnosis. Her igenex test was

 

IgM 41 IND

IgG 41+, 31 IND, 34 IND

 

That leads me to believe with your results, you should follow up with a LLMD. Is your doc a LLMD? We are going to treat her with the expectation that we will draw a positive result after some treatment. Especially since her sister and I are both positive already.

 

Susan

[momofgirls]

norcalmom

I just thought I would ask if you have tested for circulating immune complexes (C3D)? There is a lot written on these and how they are common in lyme patients however if very elevated the patient may test falsely negative because the antibodies are bound within these complexes. My daughter was positive for lyme but not a lot of bands positive...just enough to be considered positive with indeterminants as well. Her C3D was always elevated up around 100 which is pretty high. Obviously this might not be the case for everyone but I wanted to share this bit with you. I really think it would be worth pursuing further testing to completely rule out lyme. Good luck.

Edited December 7, 2010 by momofgirls

[sf_mom]

The following statement is taken from Dr. Ann Corson's - Pediatric Lyme Specialist slide presentation ILADS conference Oct. 2010:

 

"A positive Western Blot need only show one species-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"

 

A good LLMD would do further provocation testing to draw out results. It is very possible, as you pursue treatment that co-infections may turn positive or symptoms become more predominate making it easier to clinically diagnose. It doesn't look like you tested for Bartonella either and that is something you will want to consider down the road. Does you son have any binding immune complexes?

 

Anyway, with both bands 31 and 39 present I think your son would benefit tremendously from appropriate treatment. Again, we've got two of the top Lyme Dr.'s in country local to the bay area. One of the Dr.'s even discovered the CD57 and is located in SF. They truly are the best of the best, both have long wait lists.... but they can help tremendously 'they have seen it all'.

 

-Wendy

[norcalmom]

Thank you for all the replies. SFmom -I did speak with the LLMD office in Redwood city, but that was before I even suspected Lyme, and the wait was months, so I opted to use the new pandas doc in petaluma to run most recent tests because it would be faster. We'll see what he has to say and I will try to see how much Lyme experience he has. I know he mentioned it to me, and I think he has family members that have had it...but I didn't think we were dealing with it so I wan't too concerned about it..I ran Lyme the tests to rule it out, to make sure we covered all the bases. we had no reason other than pandas to test for it.

 

we did test CD3 but it was normal.

 

Hopefully this is a good thing. At least it is another piece of the puzzle. He's been doing well since ivig, and hopefully getting the right antibiotics will get him the rest of the way there.

 

Thanks again!

[sf_mom]

I didn't think we were dealing with Lyme either for our PANDAS son and now I have all 3 children with congenital Lyme. Congratulations on unraveling this for your son!!!!!!

 

With treatment and identifying co-infections properly he will recover. Another thing Dr. Ann Corson states in her presentation is that 80% of all the children she sees do have at least one co-infection. I would continue to look for the potential of one closely. There are 17 strains of Babesia and only have the ability to test for two strains so clinical presentation may be vital. Two of my children are not positive for co-infections either but still suspect babesia and bartonella due to clinical presentation and their brother's results.... he is positive for babesia and bartonella. We do not have immune complexes either so it is not always the case but again can produce a false negative when testing for Lyme. You could also do C4D (if you did not) and CD57 the next time you draw blood.

 

I do understand your Dr. does have family members with Lyme but I would get on the wait list (as a back up) for one of the other Dr.'s now and make a decision for a second opinion once you are further into treatment. You can always cancel the appointment if appropriate progress is being made with current Dr/Lyme treatment.

 

-Wendy

Edited December 7, 2010 by SF Mom

[norcalmom]

I'm going to make the appointment, can always cancel - good point. Get on that wait list.

 

I don't really have any classic lyme symptoms, but I have a feeling that if he has lyme he got it from me. Grew up in RI, I know sooo many people with lyme(including my sister - classic bullseye case), and have pulled more tics off my body than care to remember.Or I'm just paranoid (must be mother guilt!) I've only recently been convinced I am not a strep carrier..after 4 cultures!

 

Is mycoplasma pnemonaie the same as plain mycoplasma? or Myco P, ?..and is this common complication in Lyme?

he also failed all but one of his strep pnemoniae 14 serotypes titers.

 

I don't think I mentioned here, but asked on the pandas board, DS has Mycolplsma pnemoniae (igg) of 2430.

Mycolplsma pnemoniae IgM -normal.

On CD57 panel-he was in normal, but very low end of normal

CD8 /CD57+ lymphe he was 4 (2-17 range)

Ans CD8=CD57 +Lymphe 76 (60-360)

 

only other abnormal labs were the Igg subclass 1 - low 396 (456-952)

Monocytes - 16 High (3-10)

Ferriten 33 (30-400) still in range, but very low for 11 year old boy on iron rich diet.

 

Thanks again to all!!

[lyme_mom]

Sounds to me like Lyme is involved based on the one positive Lyme specific band. I would not pay much attention to the igenex "negative" result because llmds would consider even one lyme specific band evidence of lyme exposure. Was your son's cd57 70? If so that is low. I thought the cd57 doesn't work as well for kids but Wendy posted something (i think) about a really low score being significant. My son's cd57 was very high at the height of his Lyme illness but he was very sick with Lyme so in his case it didnt tell us much. 400 is very high. Wendy is right about coinfections. They usually go hand n hand with Lyme and they can be a bigger problem than Lyme, especially bartonella. I would absolutely see an ilads doctor about Lyme. Anybody else won't have the experience to unravel tick borne infections and get rid of them. Good luck!

[mama2alex]

B henselae negative (igg and igm)

 

This is your Bartonella result, fyi. I will PM you about getting into the RWC office - we see them too and they are fantastic!

[sf_mom]

Thanks Mom2Alex... you are right the bartonella was tested and I missed that when looking at results.

 

-Wendy

[norcalmom]

oohh good, barronella was done! Thanks all for all the help!!

[philamom]

My daughter's Bartonella Henslae was negative with Igenex. Her doctor felt she had it due to symptoms, so he re-tested with a different lab (Specialty Labs) and it came back positive.