Need smart PANDAS/LYME Moms to weigh in..

[minimaxwell]

Wondering if anyone would mind giving me their opinion? I tend to trust groups like this more than most docs <br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">My daughter has PANS ,fatigue is a big part of it(along w/ocd,anxiety and panic.) She got 70% better with lVlG and currently takes augmentin 500BID.<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">Negative western blot with Quest. So we did basic Igenex.<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">lGG **41 kDa + lGM ** 31 IND **41 IND 45 kDa +,<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">so the only one that really worried me was band 31. Did an additional band 31 epitope that is 95% accurate. It was NEGATIVE.<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">So my question is..can I relax now and say she does not have Lyme? Also,never really herxed from abx (aug and doxy) or lVlG.<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">THANKS!

Edited August 1, 2012 by minimaxwell

[Ebersolk]

My daughter was diagnosed w/Pandas/Pans over 2 1/2 years ago. We had 2 negative Quest Lyme tests. We never did any co infection tests.

 

In September 2011, her Igenix test showed the following:

 

31 IND, 39 IND, 41 +++, 83-93 IND (IGM)

31 ind, 41 +, 58 + (IGG)

Bartonella + IGM 20, IGG 80

Ehrlichia + IGM 20

 

CDC would consider us to not have lyme. I went to lyme doctor who diagnosed us with Lyme.

 

We are currently still treating for Lyme and her test results in May showed 41 kda + and 39 InD (IGM), all IGG negative. All co infections negative. Since we started treatment with the Lyme antibiotics,OCD/anxiety is slowly getting better. (It spikes when we are taking the cyst buster for 2-4 days and then goes back down).

 

Did you do any co-infection test? I would still go to Lyme doctor and get evaluated.

 

Kerry

[minimaxwell]

Not sure why when I copied and Pasted it showed up all garbled.I'll try agin, here goes:

 

Wondering if anyone would mind giving me their opinion? I tend to trust groups like this more than most docs

My daughter has PANS,fatigue is a big part of it (along w/ OCD,anxiety and panic). She got 70% better with lVlGn and currently takes Augmentin 500 BlD

Negative Western Blot with Quest so we did basic Igenix 4 months post lvlG

 

lGG

**23-25

**31

**34

**39

**41 kDa +

**83-93

 

lGM

**23-25

**31 kDa IND

**34

**39

**41 kDa IND

**83-93

So the only one that really worried me was band 31.

We did an additional band 31 epitope that is 95% accurate. It was NEGATIVE. So my Question is-- can I relax now and say she doesn't have Lyme. Also never herxed from abx (aug. & doxy) or lVlG. Never got worse with prednisone. Thanks!

[NancyD]

I know I have already said this offline, Tiffani, but...

 

I think her results are suspect. And given her symptoms I would see a good LLMD. Didn't you also tell me that band 45 was positive? Sometimes people who have this band positive also have Ehrlicliosis.

 

Band 31, as you know is Lyme specific and IND means present but not as intense as the low reading (+).

[PowPow]

Have you considered upping the Augmentin?

I know you did not ask this--

we saw big improvements from my teenage daughter at 1000 mg XR BID-

 

I would (having been the lyme route- though with CDC + tests) let it go ( i feel tomatoes or worse being thrown at me)

 

or at least let it go right now. try upping the abx, good ERP and maybe more time after IVIG (I am talking like a year)

 

I am only speaking from my experience - I would not say I was a "smart" lyme mom -- just a lyme mom, who believes it can be causal or contributory to our kids' illness- but just offering another opinion.

 

hope I am not making enemies now

[SSS]

No tomatoes, Pow Pow. My dd has had Lyme treatment, and honestly, I don't know if I will ever put her back on it. So, tomatoes to me too, especially as I am someone going through big time Lyme treatment myself!

 

As for the Lyme test results, what I see: You only had band 31 IND as a Lyme only specific bacteria band

(and the Quest WB had absolutely nothing on it, right?)

You had the band 31 retested, and it came back negative.

So.....band 41 can also be H pylori.

 

Fatigue is definitely a symptom of Lyme, but other stuff, too- low iron, thyroid, etc.

Is there excessive sleeping?

 

The new Advanced Lyme test, where they actually culture the blood for Lyme spirochete, is very accurate.

BUT, have to be off antibiotics for 4 weeks.

[PowPow]

Thanks s&s!! i feel better now

how is your daughter doing since she is off Lyme tx?

Those are very good suggestions you gave. I will keep them in mind (forbid I never need to know it!) and pass them on to someone else in a similar situation.

[smartyjones]

-- just a lyme mom, who believes it can be causal or contributory to our kids' illness- .

 

i consider my kids PANS -- multiple causes, including TBI. for ds8, diagnosed PANDAS, TBI much less of a factor. for ds10, not technically diagnosed PANS, TBI much more so.

 

such a good statement PowPow! unfortunately, it is such a case by case basis and the science seems to leave us with having the parent be the one having to drive so much of the direction

 

 

mini -- i say you have to study your test results, symptoms and treatment responses and go with your gut. good luck.

[dcmom]

mini- I concur with pow pow (second time tonight!)

 

I have two pandas kids- typical course- triggered by strep (initially)- respond well to treatment.

 

Both had some questionable bands on Igenex. We have seen a list of docs, three of which treat chronic lyme. Of course the opinions vary.

 

We have put it to the side as of now.

 

I guess my suggestion would be, all of this (pandas and lyme) is really a clinical diagnosis. Tests can aid in the research, but in the end it is the symptoms we have to follow.

 

So for my kids, their overwhelming symptom is ocd, and lots of other stuff that is actually ocd driven (stomach aches, urinary issues, etc.) I would say we have also seen fatigue at times also (which seemed to accompany depression and anxiety). All of this responds well to pandas treatment (we have used pex and steroids mostly).

 

So, I guess I would follow your daughter's symptoms. Have you done ERP? We have needed therapy to get rid of ALL of the issues.

 

How long ago was the IVIG? Maybe she needs more time?

 

Has she been sick AT ALL since IVIG?

 

Have you tried steroids at all?

 

Hope my rambling helps a bit

[SSS]

Thanks s&s!! i feel better now

how is your daughter doing since she is off Lyme tx?

Those are very good suggestions you gave. I will keep them in mind (forbid I never need to know it!) and pass them on to someone else in a similar situation.

 

 

**I did share sometime back on the Lyme board our decision, it's a rather long story, and may not be appropriate for these forums (infection based treatments)

My dd7 did have a good summer- we had a viral thing come through the house a few weeks ago, and we saw a flair for the first time in months.

 

Basically, my dd started 'treatment' when she was 4 years old- so 3 years, beginning with DAN! (biomedical protocols), then PANDAS, then 2 LLMD's.

Our family hit a huge crisis this Spring.

Either on or off antibiotics, we were in dark days. My whole family was very affected.

A specialized pediatric Dr. suggested Risperadone (first time we tried anything, never even tried SSRI's.)

It worked.

Stopped antibiotics and herbs, stopped special diets.

 

I am not saying we are staying here forever- I don't know. I suspect if I had real courage, I'd get the Advanced Lyme test and see where she is at, or maybe the Galaxy lab draws for Bartonella since she's off antibiotics.

And since I am spilling my guts here, I will say I have spent over $80,000 dollars in treatment for this child, and don't have stamina to go back to work. It is incredibly sad to me this seems to be a rich parents affliction- PANS.

But more importantly, the risperadone worked. No violence, no verbal attacks, not drugged, personality genuine.

She has always done well at school- excellent grades and behavior there- only at home the issues. She has never suffered body pain.

So I am not sure what the future treatments may or not be.

[philamom]

That's great S&S - I am so happy it is going well! Yay

[PowPow]

S&S: risperidone worked here, not as well as your example, but calmed massive rages, organized her thoughts, "emotional glue" as our PANDAS doc called it; though she is long off it.

interesting. mine is 14 & off abx, also

thank you so much for sharing.

Sorry to hijack your thread, minimaxwell-- I will shut up now

[LaurenK]

We had some questionable Lyme bands here as well and our experience was that treating Lyme did not prevent further PANDAS flares and some of the antibiotics used to treat Lyme actually stimulated the immune system and made PANDAS worse.

[PowPow]

we possibly had a similar experience. my child became diagnosably psychotic after a 3 month course of IV Rocephin. some of these abx affect many things, including neurotransmitters, and are not to be taken lightly.

we will NEVER know whether the psychosis was from too much, too long Rocephin (affecting glutamate) or pandas progressed to something so much more, but it has been presented as a strong possibility.

[smartyjones]

we possibly had a similar experience. my child became diagnosably psychotic after a 3 month course of IV Rocephin. some of these abx affect many things, including neurotransmitters, and are not to be taken lightly.

we will NEVER know whether the psychosis was from too much, too long Rocephin (affecting glutamate) or pandas progressed to something so much more, but it has been presented as a strong possibility.

 

 

was the IV rocephin lyme treatment? was she experiencing neuropsych symptoms before but not diagnosably psychotic or was this the start of everything for you? i'm assuming you are talking that this was some time ago? how is she now -- you say off abx, so i'm assuming good - ?