back on abx- to lyme or not to lyme?

[Priscilla]

So here I am with my greatest fear, posting that we are back on abx. My dd 8 has been doing ok without abx since oct 2. Still had tics, mild ocd, very occasional rage quickly controlled... all very manageable with a very pleasant little girl in between So here it is, December, our sick month (every year since birth) She actually had 2 days of fever the weekend after Thanksgiving and has been fighting a cold (mostly cough/congestion) but holding ok. To the orthodontist monday, then on the way home it started. The meltdown for reasons I am not completely aware of, and I can't dare ask without shrieking screams to "shut up", along with a few smacks and punches. Then the crying. The torment of whatever is going on in her head, but she can't or won't share. So the rest of the evening, very touchy.. anxious about what words would come out of my mouth, really on edge. She has such hypersensitivity to things around the mouth, head jaw. So whether it was something with the orthodontist appt (my suspicion), or a delayed reaction to the cold, its back.... This morning started with anger and crying. So hard to see when its been gone for months. By far the worst symptom, just shear torment (you can see she is fighting her mind) So I restarted my stash of Augmentin this am. We are post 4 ivig (to which I credit our success over the last few months) Unlike many, we didn't do a slew of testing before ivig. It was sudden, approved, and she seemed to be textbook PANDAS (I guess when it finally makes it to a textbook:) Elevated titers, almost EVERY diagnostic criteria. So I have been thinking about the Lyme thing. Never really made too much sense for us, but Mycoplasma would, the ivig should help with that though. So desperately, I made and appt with a LLMD (maybe ILAD??) Dr in my area. I am for some reason very hesitant on this though. It seems many are testing positive for this, and being treated. I am trying to find out how many of us are getting true success with this. There is so much contraversy surrounding lyme treatment (not that there isn't for PANDAS , but it seems even more so for lymes. I can't find anything that assures the testing is truly reliable. False negatives are one thing, but false positives are scary, especially with the aggressiveness of treatment. I feel I am in pergatory and just would like to hear some thoughts. I am going to try and figure out how to post this on the lyme forum too. Thoughts are appreciated.

[Priscilla]

I would like to post this on Lyme forum too, can anyone tell me how

[mama2alex]

To post on the Lyme forum, go to the top of this page and you'll see this:

 

ACN Forums> Advanced, Complementary, and Alternative Approaches> PANDAS and PITAND

 

Click on "Advanced, Complementary, and Alternative Approaches." Then scroll down the list of forums to "Lyme and Related Diseases" and click on it. Then just post as usual.

[Priscilla]

To post on the Lyme forum, go to the top of this page and you'll see this:

 

ACN Forums> Advanced, Complementary, and Alternative Approaches> PANDAS and PITAND

 

Click on "Advanced, Complementary, and Alternative Approaches." Then scroll down the list of forums to "Lyme and Related Diseases" and click on it. Then just post as usual.

 

 

I just wanted to duplicate this in the lyme forum if possible

Edited December 9, 2010 by Priscilla

[Priscilla]

I think I may be trippin out a little, first step, rule out strep- she has been sick - DUH! Taking her in for a test tomorrow

[mama2alex]

This is just my opinion, but I think after 4 IVIGs, if your child isn't well, its time to explore other possibilities. Seeing an LLMD is a good step and probably won't turn out to be as scary as you think. These doctors are experts at using antibiotics, so if they find Mycoplasma, they'll know how to treat it. If they find Bartonella (which has similar symptoms to PANDAS), they'll know what antibiotics to use. You can say no at any point in the process and I think as you go through testing you'll get a good sense of what you think is the right thing to do.

 

As for false positives on Lyme testing, I'm not sure where people are getting this idea. My son tested positive for Bartonella (a tick-borne infection), but has tested negative for Lyme 3 times in the last year and a half through Igenex. How on earth would anyone know for sure if someone had a false positive on a Lyme test? Is there a study floating around that I don't know about? I really question this whole line of thinking.

 

I think the best thing you can do to decrease your fear of Lyme testing is to educate yourself. If you read the book "Cure Unknown" by Pamela Weintraub, you will learn a lot about Lyme as well as getting a good understanding of the "controversy." See the Lyme-literate doctor and see if you are comfortable with him or her. If not, find a different one and get a second opinion.

 

We did this after being told by a doctor we'd worked with for 6 years that our son has Bartonella and probably Lyme (even though he tested neg for Lyme). We didn't know what to do because we'd never heard of Bartonella, and frankly didn't take it that seriously, and we thought that if he had Lyme he would test positive for it. I hadn't read anything about Lyme, so I didn't understand the difficulties inherent in testing for Lyme and that it really needs to be a clinical diagnosis by an experience Lyme doctor. So after a year of pursuing PANDAS treatments with minimal success, we got a second opinion from an LLMD. He put ds on antibiotics for Bartonella and he started making excellent progress within 6 weeks. Over 3 months they added two more medicines and he is now on Rifampin, Alinia, and Zithromax. A year ago I never would have been terrified at the thought of having him on this many meds at once. But it's working beautifully, so we are sticking with this doctor.

 

Another thing I'd suggest, if you haven't already done it, is an immune workup. It sounds like your daughter gets sick a lot and has trouble fighting, so that's worth looking into, and probably the LLMD can run these tests for you.

[Priscilla]

This is just my opinion, but I think after 4 IVIGs, if your child isn't well, its time to explore other possibilities. Seeing an LLMD is a good step and probably won't turn out to be as scary as you think. These doctors are experts at using antibiotics, so if they find Mycoplasma, they'll know how to treat it. If they find Bartonella (which has similar symptoms to PANDAS), they'll know what antibiotics to use. You can say no at any point in the process and I think as you go through testing you'll get a good sense of what you think is the right thing to do.

 

As for false positives on Lyme testing, I'm not sure where people are getting this idea. My son tested positive for Bartonella (a tick-borne infection), but has tested negative for Lyme 3 times in the last year and a half through Igenex. How on earth would anyone know for sure if someone had a false positive on a Lyme test? Is there a study floating around that I don't know about? I really question this whole line of thinking.

 

I think the best thing you can do to decrease your fear of Lyme testing is to educate yourself. If you read the book "Cure Unknown" by Pamela Weintraub, you will learn a lot about Lyme as well as getting a good understanding of the "controversy." See the Lyme-literate doctor and see if you are comfortable with him or her. If not, find a different one and get a second opinion.

 

We did this after being told by a doctor we'd worked with for 6 years that our son has Bartonella and probably Lyme (even though he tested neg for Lyme). We didn't know what to do because we'd never heard of Bartonella, and frankly didn't take it that seriously, and we thought that if he had Lyme he would test positive for it. I hadn't read anything about Lyme, so I didn't understand the difficulties inherent in testing for Lyme and that it really needs to be a clinical diagnosis by an experience Lyme doctor. So after a year of pursuing PANDAS treatments with minimal success, we got a second opinion from an LLMD. He put ds on antibiotics for Bartonella and he started making excellent progress within 6 weeks. Over 3 months they added two more medicines and he is now on Rifampin, Alinia, and Zithromax. A year ago I never would have been terrified at the thought of having him on this many meds at once. But it's working beautifully, so we are sticking with this doctor.

 

Another thing I'd suggest, if you haven't already done it, is an immune workup. It sounds like your daughter gets sick a lot and has trouble fighting, so that's worth looking into, and probably the LLMD can run these tests for you.

 

 

Thank you, I really value your input, exactly what I was looking for. I am keeping the appt with the lyme doc on the 27th. Like you said, I can take it one step at a time. I did ask him about getting a full work up for lyme/tick borne diseae/myco/and immune panel. The awesome thing is he takes our insurance:) So really no reason not to go for a workup and consult at least. I do still want to get a strep test since she has been sick since Thanksgiving and she had elvated strep titers at the start of this ride. Thanks again

[LNN]

I completely second Mams2Alex's reply. The only major difference between Bartonella/lyme and Pandas that I can see is the direct correlation with strep. All the other symptoms can be shared. My son had a very clear cut correlation to strep and yet he didn't get complete remission from the aggressive Pandas treatments of pex and IVIG. Within 2 weeks of adding the correct abx to our combo (which ironically costs us $3/mo), we saw significant improvement. After 2 months, he's the boy I always suspected was inside but could never reach.

 

I think testing for strep is the first step, absolutely. But I wouldn't be afraid of a lyme dx. The night before our first LLLMD appt., I cried for 30 minutes. Not because I was afraid of lyme, but that it wouldn't be lyme. The only thought worse than going down the path of a second lunatic fringe disease was the thought of being out of answers for my son. Untreated or improperly treated OCD is far more dangerous (IMO) than extended use of a rotating mix of abx.

 

Our LLMD is pretty good at using insurance-covered tests whenever possible and seems very informed on ways to protect the gut and detox the body to minimize herx. It's been a nice change to not be in the driver's seat. The one thing I would recommend would be to ask the LLMD to check immune complex levels when you do any testing. Elevated complexes can give you a false negative result. And as Momma2Alex said, the diagnosis is truly clinical, not bound to test results.

 

Focus on the non-controversial goal of giving your daughter a healthy childhood. Then it becomes a matter of finding the most effective treatment for her and whatever label brings that becomes secondary.

[tpotter]

The one thing I would recommend would be to ask the LLMD to check immune complex levels when you do any testing. Elevated complexes can give you a false negative result. And as Momma2Alex said, the diagnosis is truly clinical, not bound to test results.

 

 

Aha! That's why my son's WB came back with only 1 band positive, but when treated, he herxes worse than the other 3 of us combined! His C3D immune complex was 84!!! (top number, I believe is only supposed to be 8!) Our LLMD thinks he has bartonella, because he has suspcious "stretch marks" on his upper arms.

 

And, just to reiterate the 2 posts before mine...it's because of the clinical dx that my whole family is being treated (except my husband who tests positive, even by Quest standards.) That being said, we did NOT do the Igenex, because our dr was willing to treat by clinical dx, and it has proven accurate (he also looked at the fact that I was positive for mycoP, and everyone in my family had antibodies to it.)

 

Good luck. I fully believe you're doing the right thing.

[Fixit]

Besides trying the best you can to find any existing condtion...infection, autoimminne(ie thyroid, chrones)and parasties...

being that your child always relapses in dec....it would lead me to low vitamin D...

as we don't get enough in the summer with video games, and sunscreen...we really don't get enough come winter....

just a thought....

 

oh one more..trying to stay positive....i agree with checkin any posssilbe avenue..we are researching lymes a bit heavier too.......maybe like mom2two and nevergive up.....maybe the lower dose more frequent ivigs are the answer for your child....every person is differetn.....

also...maybe this is just a blip...

[Priscilla]

Besides trying the best you can to find any existing condtion...infection, autoimminne(ie thyroid, chrones)and parasties...

being that your child always relapses in dec....it would lead me to low vitamin D...

as we don't get enough in the summer with video games, and sunscreen...we really don't get enough come winter....

just a thought....

 

oh one more..trying to stay positive....i agree with checkin any posssilbe avenue..we are researching lymes a bit heavier too.......maybe like mom2two and nevergive up.....maybe the lower dose more frequent ivigs are the answer for your child....every person is differetn.....

also...maybe this is just a blip...

 

 

we are actually lucky enough to live in Southern California, and we surf regularly- we get lots of sunshine:) Dec just seems to be the month when she picks up whatever is going around. I know I am crazy for having her off abx, but it actually feels good that I was able to pull them out, she hasn't been on them for 2 months, so I am hoping they help.

[laure]

We are where you are, my Dd 9 just approved for Ivig #1 scheduled for late Jan. when her igenex lyme tests returned positive (!), even after 3 moths of abx. Adding augmentin to the mix of zith and probiotics and yeast, already she has dropped a bunch of OCD symptoms, one week into that now. First appointment with LLMD is Tuesday. I will keep posting after that consult. Thinking we will delay the Ivig until we see if long-term abx alone will be enough...why confuse the issue? If there is PANDAS as well, both are being treated by the abx, correct? Can anyone think of a reason to still do the Ivig if she makes steady progress on abx?