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Deciphering Test Results/Can Lyme disappear?


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I have not posted here in awhile because we've been holding steady - not perfect but not terrible either. My son still has OCD issues and tics that seem to come and go - right now they are definitely here. But I watch the forum daily and always learn something new from the many of you that have been doing this longer than us. With that in mind...I'm hoping some of you can help me understand our latest test results.

 

Just a bit of background: My son was diagnosed in 2010 and has had two major episodes - both during the summer. He was going to do PEX last fall but his Lyme test came back positive and we were told not to do PEX. We tried steroids which worked but we had a lot of side effects and he immediatly got sick after stopping them and it all came right back. He's done very well since starting school but we still have an uptick in symptoms when he is exposed and he's constantly exposed in school. We use ERP therapy to deal with the OCD and ignore the tics for the most part as they typically seem to ramp up for a few weeks and then disappear. He's on a daily regimen of Augmentin XR.

 

We decided to switch doctors this fall and went to see Dr. B in CT. He did extensive testing and I just received the results. He reviewed them on the phone with me before I had them in front of me and said all looked good - no co-infections including a negative Lyme test. He now runs these tests in his own lab (vs IGENEX) but said that his tests have the same level of sensitivity as IGENEX. It does look like he covered all the Lyme bands (vs just the few that the CDC test covers). But there were a few other abnormalities in the tests that he didn't mention on the phone. So here are my questions:

 

* Has anyone else had a high BUN/Creatinine Ratio? It appears to be an indication of kidney function and both of the individual results are within the normal range but the ratio is very high.

* There was a test called the Anti-Streptolysin O Screen reflex titer and it just says Positive...what is that? It's not the ASO titer - that's on another line. It was also high but that's not surprising.

* The only Lyme band that came back as positive was IGM p66. Is that a significant band? The test has it starred and says the test must have 2 bands exclusive of the starred bands to be positive. Can Lyme 'disappear' on the test if it has been treated?

* The Haemophilus Influenza Type B AB, IgG came back as out of range. What does that indicates?

* C1q, serum was out of range. No idea what that is?

* WA1 Antibody detected. Test says this is Babesia duncani which I think is linked to Lyme?

 

The back page of results was a summary of the abnormal results but only listed some of these items...did not mention the C1q or the Wa1 test. Any insight is much appreciated. I think I'm going to schedule another phone consult with Dr. B to review these results but I'd like to be armed with the right questions first!

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Babesia is a Lyme co-infection. It is usually treated with a combination of Mepron and Azithromycin (to name just one of the treatment regimes available). Treatment should run for at least 4 months. The Lyme medications do not work for it. It is very important to treat Babesia. One big symptom of Babesia is anxiety. Other symptoms include things like night sweats - especially in the early hours of the morning, little fevers (not always present), headaches, and (I think) tender shins and muscles. If you go to the ILADS website you will find a lot of good information about Babesia. The presence of this co-infection can also be stimulating your child's PANDAS flare-ups. The dual diagnosis of Lyme and PANDAS means that it is essential to thoroughly treat all the co-infections along with the Lyme. Untreated Babesia, or any of the other co-infections, are often what is going on in so called "failed Lyme treatment." Do you have a Lyme doctor to help you with this?

 

It sounds like your child also needs to have his high strep levels addressed with "better" antibiotic coverage. Better can be either increasing the dose or changing to another antibiotic.

 

When you say that the Haemophilis titers are "out of range" do you mean they are on the high end or the low end (and therefore undetectable)? If they are high then that should be addressed too as it will trigger PANDAS flare-ups.

 

The high BUN/Creatine ratio may complicate your treatment choices. Off the top of my head I cannot recall the meaning of a high ratio in the context of normal individual BUN and Creatinine levels. Maybe someone else will be able to offer some info. about this. I wish you the best as you seek to get this under better control.

Edited by RNmom
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Can you tell us with what lab your son was most recently tested for lyme? Were there any indeterminant bands in addition to the positive 66? My daughter was a patient of Dr. B's some time ago. She was negative on the Quest western blot and positive via Igenex. We ended us moving on to a lyme doctor as Dr. B was and is still very inexperienced with tick born disease. I am not trying to ruffle feathers as I know he has been so helpful to many kids but this stuff is way out of his area of expertise. The lab report indicated babesia? I would be very concerned about this and it is a little scary that Dr. B said your son was negative for all co-infections. Babesia is a serious parasitic infection usually accompanied by lyme and needs proper treatment as RNmom said in her post. Given the history of a previously positive lyme test and since the more recent test is picking up babesia, I would spend my money on a lyme doctor instead of paying for another phone consult with Dr. B.. Also steroids prior to testing can suppress the immune system resulting in a false negative western blot. In my mind I would look for a lyme doctor to help you further.

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The babesia testing was done by Focus Diagnostics in CA but I cannot tell who did the Lyme testing. Dr B pulls his own labs and sends them out to various places for different testing but I just get one big report. My son was tested for babesia microti last year by IGENEX and was negative . Dr. B ran the test for babesia duncani but not for microti...duncani test was positive. I think these are just two different strains of babesia that produce similar symptoms . The report just showed 'absent' or 'present' for each Lyme band and all were absent except 66. His test last Aug thru IGENEX showed positive for bands 41, 58 and 83-93 and band 39 was indeterminate. I had a consulte with a Lyme doctor last Sept who agreed that the test was positive but felt like my son was too young to use the more serious drugs and that the Augmentin he is already on should inadvertently treat the Lyme. The IGENEX tests also showed an equivocal result for b. burgdorferi which I know is also linked to Lyme....maybe I should start posting on the Lyme forum!

 

Lastly...RNMom, you asked about the haemophilus influenza type b result...it was low. It looks like the test measures the level of protection one has to this infection....just based on the description in the lab report.

 

I've been thinking that our next step was an LLMD for awhile but wanted these labs run first. Of course there is no one near us so guess I'll start looking at plane tickets again.

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My son has had normal BUN and Creatinine levels with abnormal ratios for years. My DD's ratio fluctuates between normal and abnormal but each number separately is ok. Our LLMD doesn't pay much attention to the ratio - he says it changes often in growing kids. Amy Yasko - an ASD/methylation guru, does feel the ratio is important, but I never walked away understanding exactly why (sorry - it's a complex topic and she only touches on it briefly). As a mom, I tend to obsess and have always wanted a normal ratio, but with all the treatment and ever changing medical picture, I've had to just be content that each number by itself was ok.

 

I do think it's worth finding an LLMD not only for the babesia, but also because if he/she has an integrative approach, they often look for contributing factors that could be impeding good health. Our LLMD found my son's issue was zinc/pyroluria - and that has made a world of difference for him. Three years of other docs - no one looked at it because it wasn't a mainstream test. But for my kids, we were chasing our tails until we started using $1.20 in zinc supplements. PM me if you want or yes, post on the lyme forum.

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Hi Nmom,

my child had Babesia WA-1 and was treated before we went down the typical PANDAS treatment course.

She had many (maybe all) of the physical symptoms mentioned by RNmom. It was found after we went to an integrative LLMD - we went there trying to find a cause for her overnight onset psych symptoms & the physical issues. She also had a marginally positive lyme test at that time, but once the Babesia was under control (Mepron, many supplements, antibiotics) her lyme test was clearly CDC positive (and this was using LabCorp or Quest).

I know we have spoken before, maybe you remember? There are a few LLMDS in the NoVA or Wash metro area who are well known. We saw a great one in NoVa. She took great care of my child. I will tell you that our experience is that it was a huge commitment financially, time-wise and even emotionally (not counting that your child needs to be extremely cooperative with many medications/supplements).

One thing I would consider if it was me and say, on my other PANDAS child, who was "dealing" with the OCD and tics as you describe and I got a vague positive like "antibody detected" but no quantitative numbers~ I might research the test and take it to my family doctor or even Dr B, though your local doctor would be alot closer! I would ask them to run it again and ask for a more definitive test.

I know this is practically heresy to say this publicly- but I can take the backlash :wacko: -- but I would NOT pursue that Lyme band, if your kid is not physically sick or incapacitated. SORRY- but I would not.

How did your positive Lyme test look last fall? What bands were positive? I think that would be helpful to compare. I think band 66 is like band 41- common in different kind of bacteria- not specific to Lyme.

The ASO reflex just has to do with how the lab performs the test- meaning if it is positive, keep testing.

When you say his C1q is out of range- high or low? I think that being low (or even undetectable) can be acquired or from birth.

I cannot imagine how frustrated you must be-- dealing with lab results that seem incomplete from halfway (or maybe almost all the way!) across the country.

Though I just said I would not pursue that single postive lyme band, I would try to have the Babesia rechecked before I hit an LLMD. However, the integrative approach of an LLMD can find so much more, like LLM said. They really work hard to get your body in tip-top shape. I think when this PANDAS nightmare is over for my child-- we will head back there to try to undo all the damage done by years of psych meds, steroids, and get her immune and detox systems in good shape.

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I don't think it's heresy to use clinical symptoms as a guide when it comes to lyme & co. I agree with PowPow. I think the body's voice should be listened to more clearly than test results - and that cuts both ways. If you have symptoms but negative tests, well the tests suck and I'd suggest treating (for Lyme, Pandas etc - none of this stuff has reliable testing). On the other hand, if the body seems fine, I think that carries more weight than labs - at least when it comes to PANS illnesses.

 

My only question would be the neuropsych/OCD issues - even tho you're coping with ERP, if you don't think strep is the trigger, then I'd look at the OCD+lab results and give a little more weight to the lyme possibility. It has to be a total picture - there's no single "fact" or clue that can tell you what to do.

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I was told the bun/creatinine ratio can be off from dehydration or higher protein diet.

My dd's is always slightly off- she does not drink as much as I would like.

 

As far as the babesia, JMO, I would treat that and not let it go.

I am on some herbs for treating it right now.

Hang in there--

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Hi Nmom,

my child had Babesia WA-1 and was treated before we went down the typical PANDAS treatment course.

She had many (maybe all) of the physical symptoms mentioned by RNmom. It was found after we went to an integrative LLMD - we went there trying to find a cause for her overnight onset psych symptoms & the physical issues. She also had a marginally positive lyme test at that time, but once the Babesia was under control (Mepron, many supplements, antibiotics) her lyme test was clearly CDC positive (and this was using LabCorp or Quest).

I know we have spoken before, maybe you remember? There are a few LLMDS in the NoVA or Wash metro area who are well known. We saw a great one in NoVa. She took great care of my child. I will tell you that our experience is that it was a huge commitment financially, time-wise and even emotionally (not counting that your child needs to be extremely cooperative with many medications/supplements).

One thing I would consider if it was me and say, on my other PANDAS child, who was "dealing" with the OCD and tics as you describe and I got a vague positive like "antibody detected" but no quantitative numbers~ I might research the test and take it to my family doctor or even Dr B, though your local doctor would be alot closer! I would ask them to run it again and ask for a more definitive test.

I know this is practically heresy to say this publicly- but I can take the backlash :wacko: -- but I would NOT pursue that Lyme band, if your kid is not physically sick or incapacitated. SORRY- but I would not.

How did your positive Lyme test look last fall? What bands were positive? I think that would be helpful to compare. I think band 66 is like band 41- common in different kind of bacteria- not specific to Lyme.

The ASO reflex just has to do with how the lab performs the test- meaning if it is positive, keep testing.

When you say his C1q is out of range- high or low? I think that being low (or even undetectable) can be acquired or from birth.

I cannot imagine how frustrated you must be-- dealing with lab results that seem incomplete from halfway (or maybe almost all the way!) across the country.

Though I just said I would not pursue that single postive lyme band, I would try to have the Babesia rechecked before I hit an LLMD. However, the integrative approach of an LLMD can find so much more, like LLM said. They really work hard to get your body in tip-top shape. I think when this PANDAS nightmare is over for my child-- we will head back there to try to undo all the damage done by years of psych meds, steroids, and get her immune and detox systems in good shape.

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