Exploring Lyme: Considering going off ABX for IGeneX Complete Panel

[bsimon3]

Hello,

We are looking into Lyme as a possible cause for my DS9's illness. History in brief:

 

In Feb '08, DS9 suddenly presented with motor and verbal tics about 1 week after illness (intermittent high fevers, fatigue/malaise, sore throat). At that time, DS was negative for strep via swap and titers. In the ensuing years, symptoms waxed and waned in the typical PANDAS/PANS pattern. DS has been treated for strep 4 times total. Mild OCD symptoms emerged in 2009 and continue along with the tics. PANDAS/PANS symptoms flare with any type of illness, not just strep. Finally got diagnosis and treatment for PANDAS/PANS from Dr. T in Sept '11.

 

Among the findings from the Sept '11 testing ordered by Dr. T (completed at Labcorp):

• no elevated strep titers,
• elevated mycoplasma IGG of 321 (ref positive >320),
• "Present" Western Blot IGM P23 Ab (no other bands present on either IGG or IGM),
• low neutrophils 36 (ref: 40-70),
• high lymphs 54 (ref: 20-47),
• Ferritin low at 22 (ref: 30-400).

Based on these results, Dr T felt that DS suffered from chronic mycoP infection and in Sept 2011 DS started Biaxin while continuing on Cephalexin. DS improved slightly but not satisfactorily. In Nov '11, DS switched to Augmentin and did a 28 day steroid taper. DS improved much with this protocol, but tics and OCD persist. DS's improvement has plateued.

 

Thus, we have decided to explore Lyme. [edit: We are not aware of DS ever having been bitten by a tick. DS has had a few round rashes that went away with either anti-fungals (ringworm) or topical steroid cream (dermatologist said that one was capilaritis).] We are working with an LLMD who ordered IGenex WB IGM and IGG. When I asked him about running the Complete Lyme Panel (6050) instead he said that he didn't order it since so many of his PANDAS parents are not willing to take their kids off antibiotics for so long (IGenex told me DS needs to be off ABX for 3 weeks when I called them this week) and that the cost of that test is so much higher (WB IGG and IGM are $200 total, and the Complete Lyme Panel is $475). But he did say to "go for it" if we were willing to step away from the ABX.

 

So, my questions are:

- Is it worth it to do the Complete Lyme Panel now?

- For those who have taken your kids off ABX to do the Complete Panel, did you stop cold turkey or taper down?

- Do you have any other advice to impart about getting an accurate answer to the Lyme question?

 

Thanks all!

Edited May 26, 2012 by bsimon3

[rowingmom]

I would definately test for bartonella with the motor/vocal tic symptoms. DD10 was IgG positive for bart, IND for lyme, had sudden onset of motor/vocal tic symptoms after a flu-like illness (an atypical, non-EM rash was involved in our case though). Her symptoms waxed and waned, flaring first with strep infection (and resolving for a couple of weeks after treatment) and then with other bacterial/viral infections as well.

 

Treating bartonella with rifampin, lyme with biaxin (she was allergic to bactrim) has brought an almost complete remission from ticcing. Ticcing did not begin to improve until we added rifampin. We did all testing before treatment started, so I can't comment on how long you need to withdraw.

Edited May 26, 2012 by rowingmom

[LNN]

The testing is always a tough question. I tend to agree with your LLMD. If the basic test comes back with evidence to support a lyme dx, you're going to pursue treatment anyway. If some symptoms also support co-infections, your LLMD can just rotate in abx that treat those co-infections in addition to the lyme. You can also do a bartonella test thru Specialty Labs - a part of Quest. Covered by insurance and somewhat reliable. My DS was negative on this test but responded well to the abx that treat bartonella, so we used clinical symptoms and treatment response as our guide.

 

I know it's comforting to have positive labs to reassure you that you're on the right trail. But you can also drive yourself crazy, since the tests for lyme & co. are just not that good. The only accurate test I know of is the new lyme culture test by Advanced Labs (there's a recent thread about it). But you need to be off abx for a month and it's $500. So you need to decide between accurate/being reassured you're on the right trail vs. going off abx.

 

Personally, I'd save the money on additional testing until you get the Igenex results back on the basic panel. I'd also ask your LLMD to test for pyroluria (aka KPU) and the MTHFR and HLA-DR genes, as these three issues have been part of some pandas/lyme kids and the kids don't really have break thrus until these issues are addressed in addition to the infection piece. I would also read up on detox. This proved to be a contributing factor for my DS.

 

Best of luck! I know lyme can feel like a kick in the gut, but it was the best thing that could've happened to us. My kids are really, really good now and I'm actually remembering what normal feels like.

[MichaelTampa]

I got off lyme abx a few times for various reasons (insurance disapproval, c-diff, ...), it was always "cold turkey" style. I always felt better right away. Some say the abx depress the immune system. Some say the bugs fight less when there aren't abx around. Some say the abx give your liver and the rest of your body more work. Regardless, I would say cold turkey would be the way to go, if you really want those tests, unless you've got a PANDAS-type situation. If you've got that, then I don't know, but probably plenty on the PANDAS board can help you with that.

 

That all said, I'd think more in line with what LLM posted. The tests just aren't that good. Test enough to justify starting treatment ... whatever that means ... some people might be so sure and have willing docs that no testing is necessary. Perhaps others won't be satisfied until some test finds DNA. Try to think about what you really need and test for that. It looks more and more that everyone with lyme has all the coinfections. In the end, reaction to the treatment will be the biggest justification to continue pursuing treatment or not. By the way, there are a number of excellent herbs and herbal mixtures that could be used as a trial treatment that are cheaper than even the $200 test.

[EAMom]

from a lyme perspective, I think it would be okay to go off abs.

 

If I remember from Cure Unknown, they did a pulse, go off abs (so the LYme would "come out") and then resume antibiotics.

 

one of which was used to heal both the author of the book and one of the most prominent Lyme-literate doctors in the country (this particular treatment, which uses pulsed application of the cephalosporin antibiotic Ceftin, is discussed in Chapter 44, titled "How I Cured My Own Lyme Disease").

 

http://www.lymebook.com/cure-unknown-pamela-weintraub

 

I don't remember how long the "off" ab time period was for the pulse.

 

 

As far as going off abs from a pandas perspective, summer (assuming no travel, minimal exposure, no sleepaway camps) would be the time to do it if you ARE going to consider 3 weeks off of abs.

[bsimon3]

I would definately test for bartonella with the motor/vocal tic symptoms. DD10 was IgG positive for bart, IND for lyme, had sudden onset of motor/vocal tic symptoms after a flu-like illness (an atypical, non-EM rash was involved in our case though). Her symptoms waxed and waned, flaring first with strep infection (and resolving for a couple of weeks after treatment) and then with other bacterial/viral infections as well.

 

Treating bartonella with rifampin, lyme with biaxin (she was allergic to bactrim) has brought an almost complete remission from ticcing. Ticcing did not begin to improve until we added rifampin. We did all testing before treatment started, so I can't comment on how long you need to withdraw.

 

Thank you for your reply. Dr T did order test for Bartonella, Babesia, and Ehrlichia titers which we plan to have done through Labcorp.

 

What is 'an atypical, non-EM rash'? DS had hives as part of his illness that kicked off PANDAS/PANS.

 

Very happy for you and your DD that ticcing is resolved!

[bsimon3]

The testing is always a tough question. I tend to agree with your LLMD. If the basic test comes back with evidence to support a lyme dx, you're going to pursue treatment anyway. If some symptoms also support co-infections, your LLMD can just rotate in abx that treat those co-infections in addition to the lyme. You can also do a bartonella test thru Specialty Labs - a part of Quest. Covered by insurance and somewhat reliable. My DS was negative on this test but responded well to the abx that treat bartonella, so we used clinical symptoms and treatment response as our guide.

 

I know it's comforting to have positive labs to reassure you that you're on the right trail. But you can also drive yourself crazy, since the tests for lyme & co. are just not that good. The only accurate test I know of is the new lyme culture test by Advanced Labs (there's a recent thread about it). But you need to be off abx for a month and it's $500. So you need to decide between accurate/being reassured you're on the right trail vs. going off abx.

 

Personally, I'd save the money on additional testing until you get the Igenex results back on the basic panel. I'd also ask your LLMD to test for pyroluria (aka KPU) and the MTHFR and HLA-DR genes, as these three issues have been part of some pandas/lyme kids and the kids don't really have break thrus until these issues are addressed in addition to the infection piece. I would also read up on detox. This proved to be a contributing factor for my DS.

 

Best of luck! I know lyme can feel like a kick in the gut, but it was the best thing that could've happened to us. My kids are really, really good now and I'm actually remembering what normal feels like.

 

I just heard about the Advanced Labs test from Dr T today as well. He mentioned that is viewed as the "Gold Standard" by East coast LLMDs.

Thanks for the suggestions for the other tests. I was on top of asking for the MTHFR from reading other threads, but had missed the KPU and HLA-DR. It's hard to get my arms around it all. Many thanks for the help.

[rowingmom]

Thank you for your reply. Dr T did order test for Bartonella, Babesia, and Ehrlichia titers which we plan to have done through Labcorp.

 

What is 'an atypical, non-EM rash'? DS had hives as part of his illness that kicked off PANDAS/PANS.

 

Very happy for you and your DD that ticcing is resolved!

We are happy too, although she did not really mind them at the time - they just seemed to be part of who she was. Looking back, she was pretty out of it at that time.

 

Her rash was a single 1" diameter smooth red rash with a thin dark red border. There was a dark mark at the center, but we found no insect attached. My DH and I assumed a spider bite because we "knew" that lyme produced an EM rash. I think you can find a picture of this atypical rash (which is actually pretty typical) on Dr Jones' website. Look on the left hand side of the home page for rashes.

[momcap]

Thank you for your reply. Dr T did order test for Bartonella, Babesia, and Ehrlichia titers which we plan to have done through Labcorp.

 

What is 'an atypical, non-EM rash'? DS had hives as part of his illness that kicked off PANDAS/PANS.

 

Very happy for you and your DD that ticcing is resolved!

We are happy too, although she did not really mind them at the time - they just seemed to be part of who she was. Looking back, she was pretty out of it at that time.

 

Her rash was a single 1" diameter smooth red rash with a thin dark red border. There was a dark mark at the center, but we found no insect attached. My DH and I assumed a spider bite because we "knew" that lyme produced an EM rash. I think you can find a picture of this atypical rash (which is actually pretty typical) on Dr Jones' website. Look on the left hand side of the home page for rashes.

 

I also had a small smooth red (maroon) rash - about 1.5 inches in diameter. It looked like a strange-coloured bruise. It did not expand like an EM rash, but slowly faded away.