Lyme too, now, it appears. Thoughts?

[momindc]

DD (9 1/2) was diagnosed with PANS/PANDAS in June of this year (2013). Cunningham test #'s were "off the charts" according to Dr. L. She has suffered with motor tics that started suddently out of the blue in March 2012. We've also dealt with hyperactivity, anxiety, frequent urination, bedtime issues and irritability. DD was put on antibiotics in June (she's been on Omnicef, Augmentin and now Bactrim - one at a time) to which we saw no really good results, and then we had her tonsils/adenoids taken out at the end of Sept. (2013). Tonsils were cultured - no strep or staph, but h. influenza. Almost six weeks post op and she's really no better than before, only the hyperactivity seems to have improved. She's about 10 days into a 2-week steroid burst following the tonsillectomy and her tics are really bothering her (neck tic is the worst) and her inability to fall asleep at night is also a problem. I hate seeing my kid suffer with all of this.

 

Hubby and I attended the conference in Providence this past weekend and found it to be very informative. On Monday (2 days ago) we took DD to a lyme specialist as we wanted to see if we might be missing something on that front. Her Western Blot test ordered by Dr. L in April 2013 was all negative, the only thing that even stood out a little from all her bloodwork that was ordered was a Mycoplasma IgG of 3.73, considered positive. Docs were not worried about that, they said, as it just indicated a past infection.

 

In pulling together DD's health records for the lyme specialist, I pulled out a previous lyme Western Blot test from the fall of 2011 and doctors notes that went with that test. On 9/25/11 we took DD to a birthday party in MD at a nature center. Either later that night or first thing the next morning we found a tick on her abdomen. We removed it with tweezers and it appeared we got it fully out. It was red around the site for a few days but then improved, no bullseye rash. About 5-6 weeks later, DD developed a dry patch on her abdomen which did not itch or hurt. Around that time she also developed a headache, cough and diarhhea. We asked Ped. at that time to look at the dry patch and she suggested lyme testing just in case, since she had previously had a tick bite there just weeks earlier. Ped. called a few days later to tell us Western Blot test was negative.

 

However...looking at the 11/8/11 Western Blot test results, we now see that while it was considered negative, lyme band 23 did show as "present" (IgM P23).

 

By the time we got to lyme specialist on Monday of this week, she had already poured over all of DD's medical records. It is her belief that DD should be treated for lyme given that band 23 showed up and it was 5-6 weeks after a known tick bite which then had a rash of some sort show up - and her symptoms started in March of 2012, 5-6 months after tick bite. We asked why that band - or other bands - didn't show up on the testing in April of this year (2013) and she said that the Western Blot test is not very reliable. It is her belief that we don't even need to do further testing, she feels we should treat lyme & coinfections given past test result showing band 23 and symptoms. This specialist studied under Dr. J and seemed to really know a lot about the PANDAS/PANS and lyme connection.

 

Specialist has suggested pulsed antibiotics - 3 cycles of the following: Week 1 - Omnicef 2X/day, Azythromycin 1X day, Bactrim 2X/day; Week 2 - same but add Flagyl 2X/day on Th & Fr only; Week 3 - OFF.

 

Thoughts on treating based on that Band 23 showing up back in 2011 and symptoms alone, i.e., without further testing? She said she does not need to see further testing (we asked about Igenix) and explained that the tests are not so reliable. She feels given the past band 23 showing up and DD's symptoms and inability to show improvement from prior treatments tried, we should just proceed with the treatment of lyme and co-infections. She has also suggested melatonin and that we get DD's Vitamin D levels checked.

 

Interested in thoughts/insights as we are new to the lyme world.

 

Thanks!

 

momindc

[rowingmom]

Are you on a protocol that your lyme specialist thinks will address ALL the coinfections? Is your lyme specialist affiliated with ILADS? Does your DD have any clinical symptoms of a specific coinfection?

 

DD didn't develop the physical pain symptoms of bartonella infection until 2.5 years after her bite. The autoimmune symptoms started within a month of the bite and MMR booster (same month, Aug 2008).

 

Both lyme and bartonella can be very immune suppressive resulting in low Ig response to the antibody tests.

 

PCR tests look for the presence of DNA and can be more reliable. Although even Igenex doesn't have the capability to test for all the existing species of coinfections they do test for the more prevalent ones.

 

I would run the coinfection tests anyway.

 

Our LLMD clinically diagnosed bartonella, the test came back positive and we treated for that.

 

Toward the end of treatment we found that additional abx for babesia resulted in further improvement. I had not considered a protozoan component before DD's improvement with malarone and now lately, cryptolepis.

 

We continue to retest yearly. Bartonella titers are declining and lyme-specific bands are becoming more reactive as DD's immune system improves.

Edited November 13, 2013 by rowingmom

[LNN]

I try to be balanced in my opinions and I don't think every tick bite results in Lyme. I can see why the previous docs didn't treat. But a few things stand out: 1. you had sudden onset 2. she has off the charts Cunningham labs 3. She isn't responding to mono abx therapy or steroids or T&A yet the clinical picture all supports an infection-triggered, autoimmune/misdirected response with neuropsych symptoms that aren't responding to Pandas treatments.

 

Framed this way, I'd agree with the LLMD you just saw and try a lyme treatment to see where that brings you. As this can be expensive, I also tend to agree with her that additional testing isn't where I'd put the money. You have a doc who's willing to treat. She will likely rotate abx, some of which may also be those used for the more neuro co-infections like Bartonella (e.g. bactrim and rifampin). What will additional testing get you right now? Maybe if you need to change docs, but for the moment, I'd put the money toward treatment.

 

The one thing that does concern me about your LLMDs plan (and maybe you just didn't list it) is that I wouldn't start will all three abx in the very first week. Hopefully, she means for you to get to this combo in a stepped manner. A general rule of thumb is to not start more than one new things at a time or you don't know which of the new things might be causing a problem. Introduce new thing 1 for 2 weeks and if tolerated, introduce new thing 2 for two weeks and if tolerated, then new thing 3. Now, this may be different with those docs who use a pulsing protocol but I think it's worth asking her about if you haven't already discussed it.

 

The other thing that gave me pause was adding flagyl so early in treatment. Cyst busters can pack a real whallop on their own. If your DD flares from the other abx, then I'd want to hold off on adding flagyl for many cycles, at least until you weren't seeing huge herxes from the pulsing of the other 3 abx. I'm no expert on pulsing and ye I know it really works well for some people (if you can stand the first 2-3 cycles which can be really ugly). So I raise the issue not to sound like some know-it-all but only as things I'd want to understand as a parent and know what to do if/when I saw severe herxes.

 

I'd read the pinned lyme threads at the top of the forum, where you can decide for yourself about bands and various tests. But I come back to "what you've done hasn't worked, yet the clinical picture suggests chronic infection". So give it a try and see. But do ask questions and be comfortable with what you're doing, why and what to do under various circumstances, just so you're not in a bad place on a weekend with no doctor easily reachable.

Edited November 13, 2013 by LLM

[momindc]

Thank you both for the very thoughtful responses. I am comfortable with the pulsing plan as it was explained to us and I mis-typed above, the pulsing plan for now is: 3 cycles of the following: Week 1, MWF ONLY - Omnicef 2X/day, Azythromycin 1X day, Bactrim 2X/day; Week 2 - same as Week 1 but add Flagyl 2X/day on Th & Fr only; Week 3 - OFF. I understand that the pulsing works very well for the majority of their patients and the protocal will address all coinfections over time.

[nicklemama]

I am not experienced enough to even begin to comment on the planned treatment. I would tell you that we treated my son for 2.5 yrs for PANS including IVIG twice. We still did not get the results we were looking for, although we did get improvement (he was really bad). I took him to a doc that tested for Lyme and coinfections (never previously done) and he came up positive for ehrlichia and anaplasma through quest. We started treatment in March and he's doing great. If the treatment you've been doing isn't working, my experience is to look for other infections and treat what you find. Your child has clearly had exposure to Lyme and is still having problems. I'd treat.

[mama2alex]

I agree with going forward with Lyme and coinfection treatment. If you've looked for and treated for other infections, with no positive results, it makes sense to move forward on the Lyme, especially since you have a known tick bite 5-6 months before onset, the rash, and the positive band on the original test.

 

I'm curious what the LLMD had to say about the steroid taper. Usually steroids are not recommended for Lyme patients, as it suppresses the immune system and can allow the bugs to flourish.

 

Also, please do your own research before starting treatment. I'm a little alarmed looking at the protocol she's recommending, but others who've gone through similar treatment could give you feedback on their experience. When my ds started Lyme treatment, we started with Rifampin because he had a positive Bartonella test. Then they added another abx 6 weeks later, and a third 4-6 weeks after that. It was done in a stepwise fashion, and we rotated antibiotics every 2-3 months over 2.5 years. When he went back on abx after a 6 month break, it was the same approach, but with a different doctor.The pulsing plan looks like a bit of a shock and awe strategy, and I worry about herxing. Is the doctor giving you anything for detox? Also, I've seen a few posts about kids reacting very poorly to Tindamax at the beginning of treatment. We are 3 years in, and still haven't done Tindamax. So just do your homework on that and make sure you think its the best path.

 

Is the doctor planning just 9 weeks of pulsing or is that the point at which she wants to re-evaluate? As I mentioned, we are 3 years into treating Lyme & Co (with 6 months off last winter/spring), and we just got a positive Lyme culture back. It's very tough to beat.

 

Last thing - re the testing, you sounded hesitant about not retesting. I think the doctors who deal with this every day don't always need the test results to know what they're dealing with. However, testing can have a psychological impact that shouldn't be underestimated. I went for years getting negative Lyme results and wouldn't treat because of it. Even once my doctor convinced me to treat, I still had doubts. Once I got the positive culture last spring, it changed my whole mindset and I became MUCH more proactive about my overall health and my Lyme treatment. I no longer had nagging doubts and insecurities about what I was doing for myself and my son. And getting his positive results back has helped even further, both for me and my husband. So bottom line, your doctor may not need test results, but if you feel they would help you, don't hesitate to ask for further testing. I wouldn't wait for them to start treating, but do ask for what you want.

[rowingmom]

Often lyme tests will seroconvert to positive after some period of abx treatment. The reason being that the immune system, once suppressed by infection, is allowed to respond properly when the bacterial load is decreased.

 

This is what happened with DD's lyme tests. Her Igenex lyme bands are starting to show more reactivity, even though she is less symptomatic.

 

We were lucky that her bartonella PCR was positive. Not many people can take the leap of faith the LLMDs do when they clinically diagnose. I certainly didn't have that faith when we started out 2 years ago.