Lyme help please

[beeskneesmommy]

Hey LL moms! Talk to me about Igenex IGG positive for the following:

 

31 Indeterminate

39 +

41 +++

 

In 7/2011 DS was Igenex positive for both IGG and IGM. It was not a Christmas tree light-up. In 5/2012 he was Stoneybrook negative for IGM and may or may not have been pos. on a low level for IGG. Most recently, 8/2013, he is Igenex Negative IGM and and the above, positive IGG. I was not that worried about it because it seems low level, but i want to double check. Thx in advance!!

[Hopeny]

Beesknees the way most doctors in the Lyme literate community interpret the wb is that a Lyme specific band, be it one indeterminate which is a low reactive or multiple igm positive, is indicative of the presence of Bb. I have posted the Bb Lyme specific bands under a post called western blot, however from memory 31 is an "old Lyme" band meaning infection > 1 year and 39 is also Bb Lyme specific. Combined with symptoms your results would be interpreted as positive (my opinion based on experience and research). There us a very good explanation of the wb, conflicts of interests of those that wrote the CDC guidelines which I consider irrelevant, and reasons why results change over time in cure unknown by Pamela weintraub. There is also good information on ilads.org. My kids have both tested CDC positive but that was irrelevant for me, what was significant was the Bb specific bands that showed up and symptoms. One kid is now elisa highly positive but I am not treating based on no symptom. For the other, who still shows an igm positive Bb band (23), we are tapering off meds because her symptoms have gone away. My opinion would be if your DS shows symptoms consider consulting an llmd. Unfortunately uneducated doctors would te you the test was negative perhaps delaying appropriate treatment leading to failed treatment and ongoing symptoms. It has taken >18 months of continuous treatmebt for dd's symptoms to dissipate, that's longer than the length if time she was untreated! I know it's an ugly and unwanted diagnosis but IMO better to know the enemy so you can have the right team/tools. The other question this brings to mind is what co infections are you dealing with? Those can cause many symptoms as well. If your DS has no symptoms personally I would file the info away and wait/see. If there are symptoms then consider seeing llmd. We have been very happy with Dr M who llm also sees in CT. Good luck

[LNN]

Bees - I guess I'd interpret your DS's results in terms of symptoms. There are reasons IgM can go away, like maybe you actually got rid of the infection! Or maybe the lyme is in cyst form or a biofilm form and the immune system can't see it and so isn't producing antibodies to it even tho it's still there in "stealth" mode. So interpretting the labs depends on what you've done in the past in terms of cyst-busting, films and most importantly, his symptoms. Where are you in terms of treatment and behaviors?

[beeskneesmommy]

Well, this is purely IGG and nothing on IGM except 41 ind. basically, when he first had Lyme pos. results (not strong, but a few bands on both IGG and IGM w/Igenex, that was in 7/2011. At that time he was treated with daily azith and also Augmentin for the Strep. he continues that protocol to this day. 5/2012 the Stoneybrook test was negative and then this most recent Igenex was what I posted above. He has made great progress although has had some backsliding since the most recent IVig 14 weeks ago (however is doing pretty well again as of about 1 week ago - started GF diet 11 days ago). He continues to have leveated Myco titres IGG only, always betw. 125-150, so not glaring. Dr. does not feel this is a concern. And, of course, the Strep, which I have always considered primary. Titres go up and dow, usually at least a little elevated and I am part of the problem - Our other specialist put me on a year of Penn VK to protect him from myself!

 

As for symptoms, typical PANDAS - flares when exposed to illness, especially Strep, freq. urination just before flare comes on, intermittent ADHD, chorea (at its worst, not every flare) tics, occasional brain fog, waxing and waning OCD. The chorea, tics brain fog and OCD have improved considerably over the last year. the OCD comes and goes in intensity still and there are occasional bouts of significant chorea when in flare....hope that helps. I know Strep is a current culprit as evidenced by recent blood work, but I want to make sure I am not still dealing w/Lyme and Myco. i am suspicious of the Myco but I am told not to be concerned about it. Thx!

[LNN]

We stopped treating lyme 4 months ago and I st ill can't bring myself to say "he had lyme" - I still think of it in terms of he may always have a little lyme - not sure you can ever eradicate all of it after 3 yrs of undiagnosed infection. But for now, his body seems to have reached a detente, a truce where his own body seems to be able to keep things in such a balance that it isn't an issue demanding our attention right now. Maybe that's PTSD on my part. or maybe I'm just trying to prepare for what could happen if his health declines or he needs to fight some other infection and the detente fails. IDK. But like you, our focus is on healing the gut right now, not on killing spirochettes.

 

Since your DS is on combo abx and you're only seeing flares with strep, then I think I fall where you probably do - maybe it's gone, maybe it's not, but for right now, it's probably ok to maintain status quo and focus on healing, steps like diet and foundational health. If any lyme is left, it could be lowering his threshold for his ability to fight strep, but based on your labs and his cyclical flares that correlate to strep, not some 4 week cycle, it'd be a back burner, sticky note in my mind sort of thing. Don't think you need to fight for additional abx or treatment aside from Pandas at the moment. JMHO.

 

FWIW - you may find value in a Metametrix stool test if you haven't done one. We found Sacc B in my DS's results and our LLMD initially blew it off as no big deal, until I told him the DS reacts strongly (in a negative way) to Sacc B probiotics. LLMD was surprised but then said, well, then I guess we might have found the source of DSs lingering OCD. Now awaiting "pre-appoval" for difluan Rx. Pre-approval for a yeast treament? Seriously?

 

I digress. I think for now, I'd go with your current plan and only dig this up again if he starts flaring for no other apparent reason. Others might disagree with me, but without any flares not associated with strep, and a current combo abx protocol, what would you do to treat lyme that you aren't already doing (other than maybe rotate abx if his strep flares weren't resolving)?

[beeskneesmommy]

I kind of think that's where Dr. B is going with it and also he way i feel, but wanted to check in for a more seasoned opinion. I may have mentioned this, but Diflucan is our magic bullet for the clean-up sweep so to speak. DS has had elevated Candida, maybe still does - need to get another draw on that soon, but we do longer runs of 35 x 2 (35 doses in a bottle). School structure and GF are helping as well. 1st 2 days of school last week Th and F a kid each day went home early from his class room with fever. DS is still looking good a week later. THAT is amazing! We are shelling it out to send him to a private school, much smaller, that is willing to cooperate with our health concerns. Hopefully it will be successful because it is the last chance. If he gets re-exposed numerous times this year, I will have to pull him out and home school. Many reasons why that would not be optimal!

 

On a diff. note, I came up + for Lyme (Igenex). I have been suspicious for a while. I am going to run thru several weeks of Doxycycline and hopefuully knock it out. Again - not lit up like a Xmas tree, but IGM 31+, 41 + 39 IND, I have had weird stuff going on for a couple of years that a neuro was never able to diagnose...so of course sent me on my way. Also intermittent joint pain, fatique, etc. Most of the time I push on and I AM 49 with a 6 year olf PANDAS kiddo and all of the trappings that come with, but i just kept feeling like something wasn't right. Anyway, won't hurt to see if the the symptoms go away with abx.

 

Don't mean to sound flippant I know how serious it can be - thus starting with some doxy.

 

Glad to hear your kiddo is doing well and as always, thank you for your thoughtful ideas and assistance!

[nicklemama]

Bees, we are roughly in the same boat. I'm 53 with a 9 yo PANS boy. I feel it.

[rowingmom]

51 with an 11 yo PANS girl. Japanese knotweed and bioidentical progesterone all the way !

[lfran]

Ok, I'm 50 and ds is 12. Are there any young moms out there in pandas/lyme land? Say, 35 and under? Were those of us born and raised in the 60's somehow carrying something? Or our older eggs???

[Hopeny]

Doxy may not be your best bet if its not a recent infection. You also may want to test for co infections in yourself and also look at concurrent herbal therapy. I wouldn't worry too much about the number of bands, that's author gary w's propaganda to protect his vaccine patents and insurance company finding.

[Hopeny]

Doxy may not be your best bet if its not a recent infection. You also may want to test for co infections in yourself and also look at concurrent herbal therapy. I wouldn't worry too much about the number of bands, that's author gary w's propaganda to protect his vaccine patents and insurance company finding.

[LNN]

Ok, I'm 50 and ds is 12. Are there any young moms out there in pandas/lyme land? Say, 35 and under? Were those of us born and raised in the 60's somehow carrying something? Or our older eggs???

49 w/an 11 yo and 8 yo. I think the younger crowd (and many old timers who used to hang out here) has migrated to the FB support page. I don't think it's our age that contributed to Pandas - some moms I know are in their 20s and early 30s - it's more that us "mature" women may be drawn to the format of Lats over the sound bite format of FB. I can't explain myself in hash tags.

[momcap]

Ok, I'm 50 and ds is 12. Are there any young moms out there in pandas/lyme land? Say, 35 and under? Were those of us born and raised in the 60's somehow carrying something? Or our older eggs???

I'm 35 with a 9 y/o PANDAS DS. I don't think it's an age thing.

[mdmom]

I was born in 1970 - I gave birth to my son when I was 27. He is 16 now and I'm 43.

 

I don't think it's an age thing.

[nicklemama]

I wasn't implying maternal age has anything to do with it. I was just commisurating that when you are older with a younger child, its tough. You are not at your physical peak dealing with a child that can be physically aggressive. We adopted our son and his birthmother was 19 when he was born. I don't believe his prenatal environment is the cause of this. He was so healthy prior and doing very well academically, socially and in all other areas of development. He was such a good baby and the sweetest boy. He still is the sweetest boy when PANDAS is not attacking his brain.