Where would you start?

[KaraD]

Hello,

 

My psych-dr suggested we consider PANDAS for my ds,4 (PDD-NOS, ADHD, OCD) His strep titers were elevated and his lyme titers were negative. From the brief time I've had to research, he fits a classical PANDAS dx.

 

However, I have read some suggestions that I should consider testing for several different bacterial infections that present similarly to PANDAS and that lyme titers are not reliable.

 

Where would you suggest I start with testing? What tests, labs, for what bacteria and why?

 

Thanks in advance,

 

Kara

[MichaelTampa]

Yes, good to consider lyme. Possibilities include PANDAS only and lyme only and PANDAS+lyme.

 

Regarding lyme, I think a common approach is to get an IGeneX western blot and IFA (similar to ELISA) test. They have that in a package. IGeneX is one of the specialty labs for lyme, and will give a better western blot than LabCorp or Quest. The western blot just looks for antibodies to borrelia (lyme), but not coinfections.

 

Some people and docs also like to do the CD57 test, others think it is useless for people below age 13-15. CD57 has historically been LabCorp only, with it not available elsewhere. Apparently it is now available at Quest and IGeneX. I would still recommend LabCorp for it, for those doing it, because people like to compare scores and what they mean, and all the history is LabCorp. Of course, to limit needles and visits, getting that with IGeneX does have the convenience and less pain factor going for it.

 

There are lots of other tests, coinfections and whatnot, I think there the various tests the different docs use really diverges, and so going too far in that direction is potentially doing tests that the doc won't think are needed.

 

IGeneX will require MD to sign for the test. Another approach is to get a lyme doc and do what tests they think make sense as determined on the first visit. That could eliminate wasteful testing, but would likely slow things down if you could get another doc to sign for the IGeneX while you're waiting for an LLMD appointment. I say that because in many cases it can take weeks/months to get into a lyme doctor, but every situation is different.

 

I think some like to get the tests and use results to see if a visit to an LLMD is warranted. Everyone has their own perspective, but since the tests are so unreliable, I think any serious consideration of lyme involves having a lyme expert (LLMD or LLND or whatever) visit with the patient and discuss symptoms, regardless of the test result. For anyone with that view, no need to wait for test results to schedule an appointment.

 

Hope that helps get you started with some thoughts.

 

Michael

[momcap]

We stumbled upon PANDAS after 2 years of psych diagnoses - ADHD, ODD, OCD, GAD, mood disorder-NOS, Selective Mutism, SPD, and questions of Asperger's. I was so thankful to have finally found out about PANDAS. DS7 has chronically elevated ASOs, and Cam K 176. His younger brothers both had scarlet fever, although DS7 at the time had never had a confirmed strep infection. The PANDAS specialist we contacted called him a "poster child" for PANDAS. Without a doubt he reacts VERY VERY badly to strep when it is in our home. But due to the persistance of people on the PANDAS board saying to rule out other infections I began to seriously look at lyme. I had DS tested and it came back negative. So that ruled it out, or so I thought. Then we started high dose antibiotics for PANDAS and DS went berserk. He was a raging monster every day for a month. We had to pull him from school after he attacked a child, threatened his teacher, trashed his classroom, and ran away. So we switched antibiotics, and tried another one at high dose. He was raging again, although to a lesser degree, and he got strange rashes coming and going, swollen joints, increased aches and pain everywhere, ringing ears, sore feet, etc. My DS has had serious psych and pain issues since birth (well, since he could talk he's been telling us, but I think there is evidence from birth). So I tested myself for lyme via IGeneX and it came back positive. Which explains a whole lot for DS, but also for my history, even though I'm well now. So we're waiting to see an infectious diseases doctor who specializes in treating lyme.

 

All of this is to say that my "poster child" for PANDAS most likely has lyme. Like Michael said it can be lyme alone, or PANDAS alone, or both. I'm really hoping the infectious diseases doctor will be able to help us sort through that. I suspect he has PANDAS which developed because of an untreated lyme infection. And then there's the PITAND group - who have similar symptoms but not specifically caused by strep. Some common triggers for infection triggered autoimmune disorders are strep, lyme and mycoplasma. I know there are many others as well. Just know that a negative lyme test does NOT rule out lyme, as false negatives are very common.

 

Here's a good explanation of the limitations of lyme testing and why lyme remains a clinical diagnosis: http://www.lymenet.de/labtests/brenner.htm

 

Good luck!

[momcap]

I just realized that I did not answer your question

 

Where would I start? If there is any possibility that your DS could have lyme then I would do a complete lyme panel via IGeneX, and/or a visit to an LLMD. A good LLMD can let you know what tests you should get for lyme and co-infections based on symptoms. Maybe that's a better place to start? IDK. I'm a newbie to lyme, so hopefully some more experienced people will chime in with good advice and reasons why. We went the other way around, testing first to see if going to an LLMD was reasonable.

[LNN]

Kara,

Knowing from your Pandas posts that you have other things you've looked into, and since you might be looking at travel if your child does have lyme, I think I'd suggest two things at once.

 

1. Assuming your DAN is willing to order an Igenex test, I'd email Igenex (go to the "contact us" tab on their site and request a test kit) and have your local doctor sign the upper right portion of the order slip that comes with the kit. It's a financial decision as to whether you order just the basic lyme panel or a test that also looks for co-infections (babesia, bartonella, et al). Although you could have a co-infection and not lyme, it's more common to have both. Because money was an issue, we opted to just do the basic panel. We then found an LLMD who tested for co-infections using a lab that accepts insurance. Note - although Igenex requires that you pay them up front and they do not accept insurance, they do send you the form you need, with diagnostic codes, so you can submit your own claim for reimbursement from your ins. co. You may not get reimbursed 100%, but you may get a portion of it covered.

 

2. It takes about 2 weeks to get the Igenex results back. While you wait, I'd research LLMDs (you can find suggestions on how to do this in the helpful threads section at the top of the forum). Many LLMDs book about 6-8 weeks out, so I'd make an appt. now. You can always cancel if the Igenex tests come back 100% negative. (also read up on the short-comings of testing in the helpful threads). You can also ask to be put on a waiting list and often you can get in much quicker if you're able to take an opening on short notice. Make sure you ask about cancellation policies. Many LLMDs will charge you for the appt. if you cancel with less than 48 hrs notice.

 

3. If you haven't already, I'd speak with your local doctor about starting antibiotics (often abbreviated as abx). I know you were thinking of going in for a throat swab. Usually, lyme is treated with more than one antibiotic at a time. But take what you can get. If your child initially seems to get worse, make note of it. Look for any body rashes. Ask your DAN about detox agents and try those before stopping an abx prematurely. In lyme, there's something called a herxheimer reaction, caused by the toxins released by dying bacteria. You get worse before you feel better. So a bad reaction to abx may be a good sign.

 

4. For background, if you like to read, the best single source for an intro to lyme is "Cure Unknown" by Pamela Weintraub. It doesn't get into the nuts and bolts of treatment, but does a good job of explaining the world of lyme and why treatment can take so long.

 

5. At the same time, it doesn't hurt to keep looking at Pandas. It's just that many of the members on this lyme forum once hung out on the Pandas forum - many of us swore that we had poster kids for the disease, myself included. It was only after our kids failed to respond to Pandas treatments that we had to keep looking for answers and found lyme (or Tick Borne Illnesses/TBIs - which can mean lyme or any co-infection like bartonella, which causes a lot of neuropsych symptoms). So it's not a bad idea to keep an open mind to both.

 

Hope this helps. But ultimately, trust your gut.

Edited March 29, 2011 by LLM

[KaraD]

Hi LLM, Momcap, and Michael,

 

Thank you all for your wonderful suggestions, links, explanations and experiences. I feel like I am at least getting a doable plan formed!

We saw our DAN! today and ran the Igenex with co-infections, and OAT, and the Cunningham. I ran the "plan" by a PANDAS "expert" and then by the DAN! and they both agreed. I'm still going to email it to our psych doc, but I think it will at least give us a good idea of what we are dealing with (fingers crossed).

This forum has been wonderful. I wouldn't have know to run the Igenex without you guys.

 

Thanks again,

 

Kara