Spent a load of money on lyme testing

[Dedee]

My 8 year old daughter has been struggling with PANS since Nov 2010 after receiving the flu mist. She was positive for Myco p. and has been on antibiotics since that time. Last myco titers were still elevated a few weeks ago (both IgG & IgM). She has had 2 HD IVIG's and even one week of IV antibiotics as well as the constant oral antibiotics. She has slightly elevated strep titers and she is currently on biaxin 250mg twice daily which should cover both the strep and myco p. She is also on Lamictal 50mg twice daily. We recently found out that she is MTHFR positive (for mutation) but her histamine levels are normal. I finally made the decision to just go ahead and pay the money for a full Lyme and co-infection panel. I felt it would be worth the money to have a definate answer one way or the other. Hmmm, no way it could be that easy right? So the entire co-infection panel was negative. Nothing to argue there. But the Lyme western blot was a little boarderline I think. Please tell me what you think. On the IgG side, all bands were negative except for a +41. On the IgM side there was a 18+, 39 Ind, 41++, & 83-93 Ind. I realize the IgG looks very normal, but what about the IgM? The doctor who did the testing is not an LLMD but agreed to do the testing to appease me. I do have an appointment to see an LLMD but not until the end of July. We will be seeing an Immunology group in Florida in June but I doubt they will read it as anything but negative. Please tell me if you think I should keep the appointment with the LLMD in July or just stick to the current Myco p treatment and hope for improvement. I think they are planning on doing allergy testing when we go to the immunologist in June and we will hopefully get more guidance on the whole MTHFR piece.

 

I would greatly appreciate any opinions on these results. Thanks so much!

 

Dedee

Edited April 16, 2012 by Dedee

[SSS]

I always feel like I'm the one who always speaks of the bloody p23, but Dedee, I understand where you are at- so I am going to offer my opinion -

Keep the appointment with the LLMD.

From my countless hours of obsessive reading:

IgM can (and did for us) mean an active infection.

There are some VERY notorious LLMD's that will say: positive p23 is the ringer for Lyme. Your IND lyme bacteria bands means they DID see something (some will say an IND is like a ballpoint pen, a *positive more of a marker). And you've got your 41's, which I know aren't only Lyme specific, but she got the flaggula.

 

Anyway, I'm sorry. I know, I really get it, what you've been going through.

I am not qualified to state, of course, it's Lyme! But in my opinion, I would keep the appointment with the LLMD, who will also be excellent at treating Myco. P.

[philamom]

Based on my opinion, as well our LLMD, the 39 & 83-93 band are significant - even IND. It's indicating a response (not negative). Also, my daughter was negative for all co-infections through Igenex when we first tested her, but our llmd found Bartonella by testing through another lab (Specialty). Her Western Blot was positive with Igenex. In December we tested her through a new culture test, that was also positive for Bb.

 

I would keep the July LLMD appointment. Just find out the doctor's cancellation policy - you can always cancel prior. My daughter is continuosly positive for the 83-93 band.

[SSS]

I'm sorry, I think I'm losing my mind.

I got your band 18 mixed up with 23.

Yikes.

Hope my soon to start Bicillin shots cross over into my brain something good! Good grief.

My opinion still holds, tho, to see the LLMD.

PV'S ----

[LNN]

I debated on whether to reply on this forum or the Pandas forum, because it's almost expected that those of us on the lyme forum are going to tell you to pursue and keep the LLMD appt. But...here goes, expected or not

 

I agree with S&S and Philamom - our LLMD also agrees that IND isn't negative. It's responding to something. if it were a numeric value and 20 were positive, an IND might be 19.9. It just means the band was fainter than a line that is absolutely positive. Doesn't mean it isn't there at all.

 

My son was negative on Bartonella but responded wonderfully to the abx used to treat it. So I stopped caring what he had, so long as I saw improvement.

 

Even if you want to completely dismiss the labs, you have mycop that isn't responding the way it should. So it's possible a second infection is getting in the way. Or it's possible there are methylation issues, the MTHFR as well as maybe others, that are keeping things from getting better. IMO, the best kind of specialist to help you with this stuff is an LLMD. (DANs are probably strong in methylation but less so for tick issues). My son struggled with pandas-like issues for 2+ years and could not sustain remission. We treated with an LLMD for 8 months, saw steady progress and then found the missing piece (for us) which was a foundational deficiency (pyroluria in DS's case, MTHFR in DD's case). We've had long, sustained remissions now. Yes, setbacks with strep in Feb, so still Pandas. But mild flair and fairly easy recovery, back in remission now. So for us, this was the clear way forward.

 

No, i have no way of being able to say this would be true for everyone. But your DD has always struck me as potential lyme. I think you owe it to yourself to see it thru and keep the appt.

[Suzan]

My dd10's original Igenex test was negative IgG and IgM but due to her overwhelming symptoms, our LLMD agreed to treat. We treated for 3 months and then retested. By then her test had swung positive.

 

These were her first results which were negative

 

 

IgG results, bands 31 and 34 were indeterminant. Band 41 was positive.

IgM results - band 41 indeterminant

 

 

I can't find her 2nd results but they were close to being CDC positive. My results and my other dd had more IgM positive bands than IgG and our LLMD considered them active infection too.

 

Good luck to you. I agree with the others, I would keep the LLMD appt with your results.

 

Susan

[Dedee]

Thank you all so much for your replies. Can you tell me what the symptoms were that some of your children experienced? My daughter has mostly defiance, rages, extreme emotional lability, OCD, & minor tics. Lately she has had complaints of headaches and she has complained of stomach aches since I can remember. Of course there are other things, but these are the things that stand out the most. Again, thank you all for your replies. Your response means more than you know.

 

Dedee

[LNN]

My son had all the things your DD has. Bear in mind my son also has Pandas - that has gotten hugely better, but he's still reactive to strep. So many of his symptoms are common to both lyme/bartonella and Pandas. I actually once drew a Venn diagram with Lyme in one circle and Pandas in the other and the majority of his symptoms were in the parts of the circle that overlap. So I'll list his symptoms but can't say which ones were lyme/bartonella and which were Pandas...

OCD

Tics

Rages (not due to OCD)

Idea fixation (Mom - we need to get in the car and drive to Target to buy a Nintendo DS NOW! followed by a 45 min meltdown when the answer was no)

Big brain fog/poor recall/poor cognitive functioning (hugely improved with zinc/B6)

muscle pain

constant swollen gland only on left side of neck (common in bartonella)

dysgraphia

urinary frequency

anxiety

adhd

 

 

He did improve with prednisone and from pex and from T&A. But he could not sustain improvement for longer than 2 months. So after failed IVIG, 10 weeks later we tested for lyme and had positive 41s and IND 31, 34, 39. He responded to lyme treatments (combo abx and cyst busting abx). Then he greatly improved when we treated deficiencies of zinc/B6. This, despite overall negative Igenex and negative bartonella. So for me, it was a proof in the pudding thing. He got better. That's what mattered.

 

He did not have gastro problems. My DD did. But lyme was always a questionable dx for her. Methylation issues seem to be more her thing. The hard part of giving anyone advice is that often it's a layer thing. It's rarely one single thing, one smoking gun. So I'm not trying to say "treat lyme" and you'll be golden. But the only way you'll know if this is part of your equation is to give it a try. Aside from the Advanced Labs lyme culture, there's no test that ca "prove" or "disprove" lyme. Response to treatment - or lack of - remains the best way to tell.

[momcap]

Thank you all so much for your replies. Can you tell me what the symptoms were that some of your children experienced? My daughter has mostly defiance, rages, extreme emotional lability, OCD, & minor tics. Lately she has had complaints of headaches and she has complained of stomach aches since I can remember. Of course there are other things, but these are the things that stand out the most. Again, thank you all for your replies. Your response means more than you know.

 

Dedee

These were my son's major symptoms too - defiance, rages, extreme emotional lability, OCD and vocal tics. No headaches, but knee/leg pains and stomach aches. He has PANDAS and lyme. Like your DD's treatment-resistant myco, my son had chronic strep. His ASO would not come down despite various antibiotics (treatment strength and prophylactic) over 1.5 years. When we discovered lyme and started with high-dose combo abx, his titre finally started falling after 6 months. Last check it was in the 300s, previously in the 500s. IMO if a "regular" infection does not behave regularly there must be something else going on - lyme, methylation, pyroluria, or ?

[Suzan]

My dd had sensory issues, gluten intolerance, emotional liability, defiance, OCD, anxiety, limb/joint pain with periods of time of unexplained inability to walk.

 

Her primary remaining symptom is anxiety with the other symptoms much less obvious and debilatating.

 

Susan