mommybee

SSRIs were of absolutely no use. They weren't bad, they just did nothing even at high levels. Finding where the strep was hiding and bringing down the ASO and ADB was what made the real difference. Also helpful for temporary symptom relief was finding the right anti inflammatory. Advil didn't work.,

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Thanks for the responses Nicklemama and Emily. I've forgot to mention that I took a month of Biaxin, so I've actually been on one abx or another since December. Cipro is out. I was also put on Levaquin (same class as Cipro) and had the bad joint reaction. So that family of abs is out forever more. The odd thing is I'm competely asymptomatic-- completely healthy. The only reason why my titers were checked was because my kid's PANDAS. Weirdly, his Myco P has either been in the equivocal or normal range. In over a year, he's never had a positive result. Of course the Azrithromycin he takes may be a prophylactic, but I have to assume that Myco P isn't causing his PANDAS since his ADB has been positive throughout the same time period. I guess my question is whether there is such a thing as a Myco P carrier. I have to guess that most healthy people don't check their Myco P titers so there well could be lots of folks walking around with high readings who don't know it. My GP was completely unfazed. So what's the verdict? Are high titers a problem absent symptoms and if so, is it a big enough deal to need treatment?

Thanks for all your thoughts. I took a course of Azrithromycin (30 days) which brought my strep titers into check (normal ASO and only slightly elevated ADB) but did nothing to reduce mycoplasma p IgG or IgM. I then did 30 days of Claramycin and 30 days of Minocin to no avail. Any thoughts? My child's mycoplasma p titers are high normal, his ASO is negative and his ADB, though high (750) is falling. I'd love advice.

Gee. The doctor who prescribed prozac for my child (20 mg, if I remember correctly) said that because of the long half life, the Prozac self tapers. In other words, it leaves the system slowly. Because the medicine was never of any help in the first place (SSRI's aren't effective if the cause of the OCD is triggered by an infection rather than a serotonin imbalance), I don't have any personal knowledge about whether our doctor was correct or not. All I can say is that my kid just stopped taking the stuff with no problems at all.

I'd call the office if I were you. Igenex results can take a few weeks, but the secretaries will let you know if they've received them if you ask them.

Hi Terri- Dr. B is wonderful. He'll get to the bottom of it, if anyone can. I'm not sure what you mean by anti dnase being elevated -89. Normal is under 376 if the test was run by quest or Mayo. Was the recent blood work run through the same lab as before? Sometimes the values from lab to lab can differ. Has your daughter been been sick recently? Typically strep and or myco p titers rise after an acute illness. I'm also a little confused about the PANDAS/Lyme/Bartonella dx because Azithromycin and Cefnidir don't provide the same coverage as Augmentin. Dr. J and Dr. B usually favor the combination of Azrithromycin and Bactrim for Bartonella. Is your daughter allergic to penicillin or sulfa drugs? Low vitamin D levels are to be expected in kids who live in New England. It's been a snowy winter. Kids who test positive for Lyme almost always have low D. This is easy to supplement. Just put a few drops of liquid vitamin D into her milk or juice and she'll drink it right down ( http://www.amazon.com/Source-Naturals-Vitamin-Liquid-Fluid/dp/B002R3OBDU/ref=sr_1_4?ie=UTF8&qid=1369539877&sr=8-4&keywords=liquid+vitamin+d ). Dr. Jones typically recommends 2000 ius or one drop. Why are you starting Keflex? Azrithromycin woudl be protocol against mycoplasma pneumoniae and is effective against strep. Keflex isn't typically used to treat either. My heart goes out to you and your daughter and I'd like to help, I just am having difficulty making sense the treatment plan. I am familiar with your doctors and have been treated for high strep and Myco P titers too.

Thanks you all for the well thought out responses. I am so confused. We just got back the results of the most recent blood work for my son and learned that his IgG and IgM are completely normal. This makes me thing that he isn't having a problem with myco p. Obviously he may be protected by the meds he takes, but I'm wondering whether there's any need for me to knock it out of my system since I'm not symptomatic at all and it doesn't seem to be affecting him. If I'm not symptomatic and he's not being affected by my immune response, is there rally any great urgency for me to be treated? I'd welcome your thoughts on this.

I'm pretty sure there is on in Southborough. You can contact Minimaxwell on this forum. I think she may run it. Her email is daisyluvslulu@yahoo.com

I don't believe that abx will have any negative effects on TS, but I'd stay away from steroids if possible. They are known to make tics worse and are containdicated for Lyme because they depress the immune system.

Dr. Bouboulis has offices in Darien and Stamford, Connecticut. He treats adults and takes insurance. We see him and I have great respect for him. If it were me, I wouldn't be asking for any particular blood tests. I'd get in with a doctor who treats PANDAS/PANS and let him decide what labs to run. Dr. Bouboulis is an allergist as well as an immunologist. He is well versed about allergic triggers. You say you had a worsening of symptoms in November that continued over several months and that were treated for cellulitis in December. Cellulitis, while usually caused by a staff infection, is also often caused by strep. It wouldn't seem that a two week course of doxycycline would effectively treat a strep infection, but I'm not a doctor. I do agree with the others that what you're describing isn't adult onset. It started when you were six years old and had the classic saw tooth progression with each episode being worse than the one that preceded it. I think it makes sense investigate with a doctor who treats PANDAS/PANS because you may be able to get better. Good luck.

I wonder if someone can enlighten me. I had some blood work done to see if I might be a strep/mycoplasma p carrier and was found to have elevated ASO, ADB and myco p IgG and IgM. I am not sick but the doctor put me on a month Azithromycin anyway because he thought that I might be a carrier. After taking the course of abx I was retested and my strep titers came back normal but my IgM was still 1200 and my IgG was greater than 5. Can someone please help me to understand what this means and how it might be affecting my pandas child. Thanks in advance.

You might ask your doctor to prescribe Celebrex. It's an anti inflammatory that did wonders for us. Ibuprofen was completely ineffective.

My understanding is that band 41 is not Lyme specific. A positive band 41 only shows exposure to bacteria with flagella. Exposure isn't the same thing as disease and there are other organisms that have flagella-- pneumonia, for one. Lyme is sometimes hard to uncover, but I wouldn't jump to conclusions about a positive band 41, especially since your daughter may have had myco p at the time of the testing. RE: EOS, liver enzymes tend to bounce around some. Is your doctor concerned? I'm pretty sure that abx treatment can influence liver enzyme results. LLMDs test for and treat coinfections. If your daughter has symptoms, you should probably have her tested.

I would check the pinned threads at the top of the PANDAS forum here on the ACN site as there is a ton of information there. Typically, what most of us get are tests for strep titers -- ASO and antidnase b -- and then a full immune panel (IgG, IgA, etc.). If there's any possibility your DD has been exposed to lyme disease (hiking, camping, etc.), then testing for lyme infection and co-infections would be important, also (there's a Lyme forum here, as well, that you could check in that regard). It may seem overwhelming. One place to start might be with the most "likely" culprit, i.e., if your DD has had strep recently, go after those tests first. Or if she spent 3 weeks camping in the wilds of Maine, go after Lyme first, etc. Everything you rule out will help you move forward, even if you're not getting it done all at once. And if your doctor is "less than thrilled" at the prospect of helping you track this thing down, you might consider making an appointment with one of the doctors (a list appears on the pinned threads on the PANDAS/PANS forum here) who've helped others of us figure this thing out and get our kids the help they need. Good luck! In addition to a Western Blot for Lyme, you should probably also run Mycoplasma pneumoniae IgG and IGm, Ebstein's Barr and a complete immunological work-up. In February, Madeleine Cunningham's diagnostic test will (hopefully) be available (http://www.moleculera.com/).You may find the links bekiw helpful for determining additional blood work you may want to ask your doctor to run to rule out PANS. http://pandasnetwork.org/busterfaq.html http://pandasnetwork.org/diagnostic-tests/diagnostic-tests/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292400/

I love the wet cement analogy. At times I've felt like I were pushing a piano up a mountain. The folks who say parenting doesn't come with a manual don't know the half of it. I am all too familiar with molasses school personnel and almost daily phone communication. High school is only four years(hopefully)so the slow pace sometimes feels like a stall tactic even though I know it isn't. Bottom line is that while we parents see all the suffering, our kids tend to behave and achieve at school so they often don't get the kinds of attention and supports that they so badly need and deserve. I was told by a special educator that homebound is much easier to manage at the high school level because there are fewer people involved, i.e. ensuring that accommodations are provided is nearly impossible because some classroom teachers aren't able or willing to individualize their approach. Much as they try to stay on top of every kid, the special ed staff isn't in a position to supervise what goes on in every classroom and they tend to find themselves a day late and a dime short which they don't like either. All this rambling is to say you're not alone and it sounds like you are doing everything right.

$90/month?!?! We've been using NAC for years, and we get ours for considerably less. Not sure what 3 caps/day equals for your particular brand, but my DS is taking the equivalent of the "adult-sized" dose used in a Yale/NIMH OCD study, which is 3,000 mgs./day. So with our 600 mg. caps, that's 5 caps/day. I get the Vitamin Shoppe brand with a bottle at about $28 for 200 caps, so that's $28 for a little more than a month's worth. Yes, in our case, we see positive impact from the NAC, and it is multifaceted, I think. It has helped his OCD, but we also credit it with helping to bust his upper respiratory issues which had haunted him since he was a toddler; he still has allergies and gets a cold now and again, but there is not the constant congestion, "snuffling," etc. he used to suffer with. Finally, both last year and this one, despite being exposed to some major flu cases at school, he's walked away with little more than a cold; it never developed past that. I guess there's been research as to NAC and reduction of flu symptoms. NAC Fights the Flu So, yes, I think NAC is worth it. But I don't think you have to pay $90/month, either, for NAC that will be beneficial. Good luck! I have a few questions. The first, is does anyone know whether there is any kind negative interaction between NAC and SSRIs or abx? Secondly,Nancy, is do you have a link to the Yale/NIMH study that your son is participating in? I'd be interested in reading the research. Lastly, because NAC is supposed to reduce histamine levels, I'm wondering whether it might be effective for someone who also experiences terrible itching with heightened anxiety. Does anyone have any thoughts about this?

My son is 16 (165lbs) and was tested in early September shortly after vacationing in Nantucket. His level then was 22. I'm assuming that this will be checked again at our appointment with Dr. Jones next month. I have read that low vitamin levels are common in Lyme patients. My understanding is that vitamin D supplementation can boost the immune system and, thus, reduce susceptibility to infection. Some studies have shown that raising vitamin D levels can also enhance the effectiveness of antibiotics. However, Vitamin D can interact badly with Rifamipin and Biaxin so if your daughter is taking either of these medicines, you should probably have a conversation about this with the prescribing doctor.

We live in the north east and my son's vitamin D levels are low, too. Dr. Jones recommended supplementing with 5000 IU of D3 daily.

The high school thing is hard, particularly for a perfectionistic, motivated student. What seems to have worked for us are accommodations that reduce stress (extended time etc.) and reducing the demands without changing the rigor. Please feel free to email me for more specifics, Surfmom. I'm all over this stuff.

I think you're right to be cautious, Jenna. My 16 year old had a terrible reaction to steroids and had to go off of it. Steroids reduce imflammation, but they also depress the immune system. In our case, the prednisone brought out Lyme symptoms that had been pretty much eliminated by months of abx therapy. It was horrible and very disappointing. My advice: if you think your son might have a vector-borne illness, stay away from steroids.

I'm pretty sure that the closest Lyme doctor is Charles Ray Jones in New Haven and the closest PANS doctor is Denis A. Bouboulis in Darien, CT. My understanding is that MGH is in the process of setting up a PANS clinic, but they won't be up and running until the summertime, at the earliest.