Lyme or no Lyme? I'm confused!

[airial95]

Okay, so a month ago I ate crow on here and admitted that we FIANLLY got our son tested for Lyme - something we handn't pursued before since he was a classic PANDAS - history of positive strep coincident with symptoms, and being in Florida - he's not in a Lyme prone area, and has never even been anywhere where he would possibly come into contact with ticks - although we do travel to Buffalo annually (although the most recent trips were in the winter).

 

Dr. B ran the tests through his office as part of his routine testing and he was + on 2 bands using the typical CDC Western Blot. So Dr. B ordered Igenex testing to confirm the positive and test for co-infections. $1200. Woo hoo!!! He also put him on a combo of Azith/Augmentin at that time.

 

Had the follow up yesterday with Dr. B. The Igenex results came back NEGATIVE for Lyme, and ALL co-infections. He did show a response that showed exposure to Lyme (Band 18 and 31 but the bands themselves were negative) - probably upwards of 18 months ago, as his body had created antibodies for it, but no sign of it now. (I haven't seen the actual results yet - expecting them by fax this morning)

 

Okay - so where does this leave me now?? I posted about a week ago questioning if the major backslide we're seeing right now was herxing or reaction to my daughters recent strep infection. Dr. B said that based on the notes that I sent him describing my sons behavior since our last follow up - it sounds like herxing, so based on that he's not sure he "believes the Lyme is really negative."

 

My husbands strep titres and myco p titres were high, so he had been treated with a 30 day course of abx, and Dr. B ordered new labs on him. So his theory right now is that my husband may really be the root of the problem after all (seriously - is that grounds for divorce? )

 

I'm just flat out confused right now. I've always had a really good "mommy gut". Everytime I suspected strep in the kids, 9 out of 10 times the rapid was positive - on the rare negatives, they had other clinical signs of strep. We took my son in on Monday to get tested for strep - because the behaviors were there, and figured it would be good to rule out before the follow up with Dr. B. I didn't really think he had strep - sure enough I was right - rapid negative, no clinical signs, culture negative.

 

My gut is telling me that it's not really Lyme, and the whold Lyme thing is just a red herring. I didn't really buy it when Dr. B called with the results last month - but accepted that I might be wrong. This new information seems to confirm my gut feeling all along.

 

The only time my son has been 100% was immediately after his T&A - when the WHOLE family, including the dogs, was on abx as a precautionary measure. Which makes me wonder if my husband really may be the missing link.

 

I know Dr. B isn't a Lyme expert, but I'm questioning if I should even try to see a LLMD or if that's just a waste of our time.

 

UGHHHHHH!!!! Why can't any of this be easy!

[LNN]

I will always be the first to put more weight in a gut feeling than anything. But...wait until you have the lab results in your hands and can look up any band info that might have an IND or + next to it. Dr B told me my son didn't have lyme because the overall Igenex report said negative on the front page. But then I got home and saw 5 IND and a few ++ and saw an LLMD, who felt that between the labs and the whole history, it was a slam dunk reason to treat lyme. And my son did improve significantly with the change in abx that the LLMD made. So I think the actual lab results are important before you close the book on it.

 

You've heard the whole argument about why labs aren't reliable (there are 3 good articles under helpful threads in the lyme forum). You'll hear from moms here who swore for months/years it couldn't be lyme but in the end, it was a part of the puzzle. I'm one of those moms. "But he's classic Pandas" I'd say. Yes, and classic lyme too. They're so similar. And you can get lyme in Florida. Not as common by any means, but not impossible.

 

Ok, so those are the reasons to keep an open mind. Then, there's your Typhoid Mary husband. Yep, probably part of the problem. But here's my working theory - a kid has some under-the-radar health problems when along comes a bacteria - strep, lyme (they share a few outer proteins that make them look alike to the immune system). The body has an autoimmune reaction - PANS. Subsequent infections - whether it be strep, myco, lyme, a virus - can always come along and now cause the same response. So you need to treat the underlying infection and subsequent inflammation. The major practical difference is which abx will you use? Answer - the one that helps.

 

I got myself so tied up in labels at one point. At the end of the day, it only matters what we do to treat it. I personally think some of the things that are helpful in lyme are also helpful in Pandas (detox, immune bolstering supplements).

 

If Dr B is giving you an abx combo that's helping and treating your DH, then does it matter what you call it? if the specific abx choice isn't helping DS or DH, then work toward finding one that does. If you reach a point where you need fresh ideas, or things stall, then look for an integrative, DAN or LLMD who can add more tools.

 

Trust your instincts but also don't get into knots on what "it" is. I slept better at night once I got over "it" having to have a single name.

[dcmom]

Hey Arial-

 

I feel your pain

 

If you want more details, pm me, but I am just here to say- go with your gut!

 

We dabbled in lyme for a bit, had some things come up on some tests, but in the end lyme (and pandas) is a clinical diagnosis. That really means YOU need to follow symptoms and response to treatment for your answer. We all know that antibody tests are unreliable- especially in our kids, because their immune system is stirred up.

 

We decided to stay the course with pandas treatment, aggressive management is what we term it. My kids have benefitted completely from this route. They are off of all antibiotics, and have been at 100% or very close for over a year. We do see flare ups, but we knock them down immediately, and we are living normal lives.

 

I wish you luck, this will be a rough patch for you, for sure. I know you will get lots of responses that are the opposite of mine- and that is fine, not all of our kids are the same, but I can tell you, I have two strep activated kiddos (that now react to other immune challenges) who are thriving on occasional abx, occasional advil, and occasional steroids.

[beeskneesmommy]

I do not think that you should discount lab results. However, if the Igenex results are neg., that gives me cause to wonder. There is a lot of inconsistency in your kiddo's testing. why not have Dr. B run another test thru his labs that do the longer culture (similar to Igenex). They take insurance but do a more thorough job like Igenex. he draws the blood in his office for this. We had some + Lyme and Bart bands thru Igenex 7/2011, then had our son on Augmentin and azith daily for a year, then retested and they were neg. I have always felt that the Lyme may have been a false pos., but we bombed it with the meds anyway, as my son has always been solid Strep:PANDAS, and these abx would address the Strep as well. I KNOW that Lyme is an issue for PANDAS, so I am NOT discounting it. Retesting may be a source of further understanding. All of this being said, my son has had 2 rounds of steroids which he responded to very well, and now IVig on Tues. and Wed. of this week. He is starting to show some minute improvement in symptomology even thru the side effects only 2 days later now. If he had Lyme, I am told that these treatments would perhaps make him worse, not better. In addition, it is only fair to say that my son has come a long way over the past several years and is considered at this point a very mild case of PANDAS - just so we are careful not to compare apples to oranges. Each kiddo is different and you know yours best. Are the combo of Augmentin and Azith are moving your kiddo forward?

[airial95]

My son's labs actually have been maddeningly consistent - negative for EVERYTHING! Every step of the way. That's been part of our biggest frustration. We have the positive rapids, positive cultures, time and again, the clinical presentation of strep (without the fever or sore throat) but no concievable reason as to WHY he has gotten strep 20+ times in 2 years. Which is why my gut keeps thinking it's my husbands fault after all. (LLM - I like your Typhoid Mary reference - that may be my new pet name for him! )

 

I was actually mildly relieved when we got the Lyme suspicion - because at least it was a "new" peice to the puzzle.

 

My son has always returned to 85-90% on abx alone, but our issue was constant re-infection before time would allow us to reach 100% - again, major reason to believe Mr. Typhoid Mary!

 

With this new combo - we're actually in pretty bad shape. He's spiralled quickly into more anxiety than we have ever seen of him. Fortunately, it's not a 24/7 deal like it has been in the past, but he gets so anxious about having to take his medicine he's making himself physically ill. Something new for us. The hyperactivity and sleep disturbance has been terrible since he's started the combo as well. Then there's his food OCD - which has morphed slightly into him being overly concerned with wether what he's eating is "healthy" or not, but he's continued to eat well, as opposed to the past where his OCD would prevent him from eating hardly anything at all. (A positive - albeit worrisome - step up in my opinion.)

 

We've been on this journey for almost 3 years now - since he was 2 years old. I just feel like we were doing what was right for our son at the time we started(very young and small, so we opted for conservative treatment), but now we've hit a brick wall with progress.

 

Maybe I'm just having a bad day and need to throw a little hissy fit!

[Dedee]

I am so sorry for your current state of confusion. There is nothing worse than when you start to doubt your own decesion making. I have been there, it's not pretty. Just remember you have been making good solid decisions for your son up until now and you will continue to do the right thing moving forward. This is a very confusing presentation I will admit. His regression with combo antibiotics is very similiar to what my daughter is going through also. We are just now seeing a little break in her flair since I increased the amount of the motrin I was giving (based on Dr. T's recommendation from his broadcast).

 

I'm not sure whether you are dealing with lyme or not. But for certain, you weren't making huge headway with the previous treatment. I like the idea of an LLMD, but that is easy to say when it's not me paying for it. I would love to hear (see) the results of the test for myself too. Maybe you could make an appointment and see how things go up until then. I imagine you would be waiting a while to get in with someone. Do your detoxing as much as you can and don't underestimate the benefit of ibuprofen. We actually started camels milk yesterday based on the post from this board. Desperate times call for desperate measures. I'll let you know how it goes. Hang in there. You are an awesome Mother!

 

Dedee

[KaraM]

The Lyme testing can be confusing and I think often misleading, especially if you child has been on antibiotics prior to the testing.

 

I don't know if I want to advise you one way or the other. Mommy gut is huge in my book, too. But I will share my story in case it help you consider things in another light. I've stated it before, so sorry if it's redundant.

 

When we originally saw Dr. B. almost three years ago, he ran a regular Western Blot on my dd. Bands 41 and 39 came up. He interpreted the test as negative. At that point, she had been on Zithromax for perhaps 2 months. She had some positive strep titers in previous months, so he diagnosed her with PANDAS and upped her Zithromax dose. She did really well for about 6 months, then took a nose dive. Her brother had strep, so we attributed it to that. But even after we treated him and gave her a steroid burst, she continued to decline. So he suspected another infection and retested for Lyme and co-infections, but this time through IgeneX. By now she had been on antibiotics for close to one year. Her IgeneX Lyme results only showed IND on 41. No other bands. So, negative for Lyme, right? She did test positive for Bartonella, though, so he referred us to Dr. J. and added bactrim.

 

Dr. J. confirmed Bartonella but still suspected Lyme. He tested her through IgeneX again, but it came out the same.

 

Fast forward to November 2011. She was doing really well...probably 90%, but had plateaued. He theorized Lyme may be in cyst form and prescribed a cyst buster (Tindamax) to be given every weekend. This past spring, he ran IgeneX Lyme again and she finally showed positive again on band 41 and IND on the Lyme specific band of 34 and 39 (the one she originally showed something for).

 

What this says to me is that as the Tindamax does it's work and breaks up the cysts, her body is finally making antibodies.

 

Maybe I'm wrong. Maybe the IgeneX tests are just inconsistent and unreliable. But to LLMs point, the treatment we have been using is working. She is 100% 95% of the time. We get hiccoughs, but their pretty small and she recovers from them very quickly.

 

On a different note, my son, who was often sick with strep, was also tested for Lyme. Initially nothing (after being on abx). Then, after not being on them for several months (but getting strep again and myco P), he tested positive for Lyme by IgeneX standards (and very close to positive by CDCs standards).

 

I think strep and Lyme are often found together. If you read Cure Unknown, there is actually a sentence in their where Pamela Weintraub recounts one of her interviews with Dr. Jones. When Lyme was first identified, but the cause not yet know, he suspected it was bacterial (whereas many others thought it might be viral). He thought this because many of his patients that came in with Lyme symptoms also had strep. When they did, he would put them on abx and their LYme symptoms would improve. If you haven't already, I suggest reading that book.

 

Kara

[beeskneesmommy]

@ARIEL, sorry, I thought that you said there were + bands and then a month later thru Igenex, neg. That is what I was referring to as inconsistency. We are similar with the age situation. Our son was dx at age 2.5 and has now just turned 6. In retrospect, I remember multiple fevers and hyperactive symptoms post fever as far back as 18 months. I also remember an illness that he had at 14 WEEKS that he and I kept passing back and fourth. I am pretty sure that this was his 1st Strep. Has he developed typically throughout? How long has he been on the Aug/Azith combo? My son herxed and looked pretty awful for the 1st 2 week or so, then after about a month, leveled off. I think you hav to go w/your gut on this one. However, if you can do it, a multidisciplinary approach is not a bad idea for PANDAS. We see 4 specialists, although none are LLLMDs, as we do not feel that Lyme is an issue, even tho his Igenex returned + a year ago. Whatever was there, if anything, is gone now, we feel. I hope things get better and I wish you well. You are welcome to PM me if you like. -Kath

[momcap]

Just a suggestion, and I know it's an expensive one, but have you thought about testing other family members for lyme? If one person has a questionable western blot, but other family members are obviously positive, then it is easier to make decisions. My PANDAS DS had many positive bands (IgM & IgG positive via Igenex) and our decision was pretty easy to treat for lyme, but that was backed up when I tested myself. I don't have current lyme symptoms, but when I read about lyme I realized I had many of the symptoms in the past. So I got tested and it came back CDC positive. No room for doubt for me. We realized all family members had possible symptoms, and when we tested DH and our other 2 boys, they ALL came back IgG positive. We don't live in a lyme endemic area either, and don't recall ANY of us ever having a tick bite. ???

 

Treating lyme isn't an easy road, not that treating PANDAS is either. But you need to be confident (or desperate) in order to move forward, and perhaps testing other family members will give you that confidence, or help rule lyme out.