filinha1

Hi All, I have a friend looking for recommendations for a PANDAS-friendly pediatrician in the Westchester NY area. She has an appt. with Dr. B which is not until October and can't find anyone to give her abx until then. Or, if anyone can recommend a different doc who will likely see her child before October, that information would be welcome. She's willing to travel but has four children, one of whom is an infant, so her preference would be to find someone more local first if possible. Thanks, Heather

I believe that as a NP she specialized in pediatrics and she works part-time at a pediatrician's office, but she treats both kids and adults for Lyme.

Hi, My daughter is being treated by Kayleen and we like her very much. Feel free to pm me if you have specific questions. Heather

I just pm'd you.

Anyone know of a PANS-friendly pediatrician in the Baltimore / Annapolis area?

It definitely counts as one of the coolest jobs ever!

Wishing your son and your family the very best for this surgery and a speedy recovery.

From this short news clip it certainly sounds like Tyler has PANDAS, poor kid. Regardless of what else other than PANDAS may or may not have been going on with Tyler, I'm not going to keep my daughter's diagnosis any more private than I currently do. I'm not too keen on dd herself finding out about this story for her own sake - she is only 11 and has enough self-doubt and anxiety as it is. We homeschool her, so we don't have the pressure of worrying what other kids might say or that school personnel might put her under a microscope for strange behavior. I do sympathize with those concerns. I think I'll take this opportunity to tell any interested parties what I know - and don't know - about PANDAS/PANS, when and if it comes up. Any friends and family who were going to steer clear of us and our 'problem' have already done so. (Not too many thankfully). I can hardly imagine it would be harder to deal with strangers who might do the same. Maybe one of the best things we can do for our kids, one of the most honorable things, is to tell the truth as we understand it, about their illness. Heather

Husband's undergrad is systems engineering - are we going to get your thoughts on the results?

Great suggestion. Paying it forward in time, money or both for more research is often the only control we have when it comes to this illness.

Agreed, lot's of money would be saved, but probably only in the case of the smaller percentage of people who swim upstream. I think insurance companies count on most people choosing the path of least resistance when dealing with any illness whose presentation has a significant psychiatric presentation - psychotropic medication. This is also the least expensive for them as those pathways - psychiatrists and drug company pricing - have been well established. Adding the insurance piece to any complicated disorder is crazy-making. Our insurance will only pay for the first visit with any new specialist, after which we have to get pre-approval or pay out of pocket. In our desperation at times to get timely treatment we have chosen to forgo the pre-approval process and just get the help...and paid out of pocket. We have also paid out of pocket to cover psychiatry rather than have our daughter labelled with a catalog of acronyms - BPD, OCD, ADHD, ODD, GAD - that may affect coverage in future. I don't have what it takes to find the best docs and treatment for my daughter and fight our insurance company at the same time. I admire people who can take both on - get help for their loved one and make sure it gets paid for. So far, our insurance company is way ahead in this game. EA, I went on a bit of a tear about insurance and didn't carefully read your post, but your point is true - IF more mainstream docs were attuned to Lyme then time, money and effort could be saved for all parties.

Agreed, lot's of money would be saved, but probably only in the case of the smaller percentage of people who swim upstream. I think insurance companies count on most people choosing the path of least resistance when dealing with any illness whose presentation has a significant psychiatric presentation - psychotropic medication. This is also the least expensive for them as those pathways - psychiatrists and drug company pricing - have been well established. Adding the insurance piece to any complicated disorder is crazy-making. Our insurance will only pay for the first visit with any new specialist, after which we have to get pre-approval or pay out of pocket. In our desperation at times to get timely treatment we have chosen to forgo the pre-approval process and just get the help...and paid out of pocket. We have also paid out of pocket to cover psychiatry rather than have our daughter labelled with a catalog of acronyms - BPD, OCD, ADHD, ODD, GAD - that may affect coverage in future. I don't have what it takes to find the best docs and treatment for my daughter and fight our insurance company at the same time. I admire people who can take both on - get help for their loved one and make sure it gets paid for. So far, our insurance company is way ahead in this game.

Kara, I just tried to pm you to say hi, but your box is full. Heather

Interesting. I find it hard to place a lot of blame squarely in the lap of a researcher like Steere; he may be guilty of being incorrect in his conclusions and may not be asking all the right questions in the first place, that much is true. But Steere clearly isn't a dummy and likely isn't an uncaring monster. When there is equally compelling science that contradicts research like Steere's, I blame our insurance companies for adhering to the views of the side that costs them less. After all there are two diametrically opposing viewpoints in the medical establishment - not the mainstream and some fringe noisemakers, but heavy-hitters on both sides. If ILADS came out with some miracle protocol that worked and cost less than 3 weeks of doxycycline, insurance would be happy to accommodate. I think our best bet is to lobby our local and state politicians, to force laws that require insurance to pay for treatment that a licensed physician has prescribed for his patient. Heather

Yes, thanks! Good read and pass-on-worthy for relatives who still don't quite get it, i.e. "If it's 'real' then why is there still a controversy?"

Anyone use low-dose unbuffered aspirin as an anti-inflammatory on a regular basis, or know of a reason not to? I keep reading about using ibuprofen during an exacerbation, but what are the thoughts on aspirin? Tx, Heather

I thought about this topic you're introducing after watching an excellent documentary called How To Survive a Plague (review: http://movies.nytimes.com/2012/09/21/movies/how-to-survive-a-plague-aids-documentary-by-david-france.html?_r=0 ), on the activists during the early years of the AIDS epidemic. I went so far as to find the current contact info for a couple of the men who were instrumental in getting the govt. and the pharmaceutical industry to pay attention and make timely changes. I haven't pursued anything after that. With Obama's BRAIN Initiative funded with 100 million for its first year to start - http://www.npr.org/2013/04/05/176339688/president-obama-calls-for-a-brain-initiative - I hope and believe the connection between mental illness and biological factors will get plenty of study and support. I have no experience with activism other than doing what I can for my own child, but I'm very interested in working with anyone else who wants to actively push for more research on PANS. Heather

Unfortunately, I think this is correct...that is the surgery. We know the cardiologist and the surgeon, as DH had mitral valve replacement 2 years ago (I have always suspected all the infections for him, too, but he REFUSES to accept it, even though his Lyme test is the only one in our family that actually came back CDC positive. The rest of us were based on clinical symptoms, and even his clinical picture is quite positive. The decision on my son's valve was made by doing an echo...found that the leak had increased to moderate/severe, and then doing a MET test (stress test) to confirm it. I asked the dr. if he could just repair the valve, but because it is a bicuspid, instead of tricuspid, he said there's really no way to truly repair it. I trust his opinion on this part, but not the infection part, and there's no way I'm not going to absolutely confirm beyond a shadow of a doubt that this was not caused by infection. I like the idea of trying to get hold of Dr. Fallon, and will try to call him. I've also now got an email into Galaxy Labs, per MDMom...thanks. I've also sent an email to our dr, and asked him to check into doing the lab, and I have a call into the vet to see if the bartonella test he did on our dog (the vet says it is VERY accurate, unlike the human tests) can be done on our son. Don't have much time to do this, but I'm doing as much as I can. BTW...I have to thank our ART dr, who did a test that sent up red flags, and told us to get him to the cardiologist. Otherwise, we would never have known. Can you imagine if the cardiologist knew that the test that found this was done by and "alternative" dr? (lol) Tpotter, My dd is in a fairly good place right now; if it would help at all, I would like to offer my help sending email or making phone calls on your behalf. A bit awkward, I realize, since we don't know each other. If it doesn't feel too weird to you and it'll get you info faster, I'm happy to do it. Let me know.

Would it make any sense do you think, to try to get in touch with someone in Brian Fallon's group at Columbia University? I don't know if they might have some good advice regarding Lyme co-infections and best practices prior to surgery, but here is the link with contact info: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=baf1&DepAffil=Psychiatry I'm sending hope and good thoughts your way. H.

Interesting, thanks!

We opted not to try doxy because my dd is the whitest child on the east coast and we're heading into summer - LLMD was worried about sunburn. She is currently on azith and augmentin as well.

Hi norcalmom, My dd's myco levels are very high. She is being switched from minocycline to rifampin, because of mood swings and increased anger. I know she may be herxing a bit, but that was our LLMD's call. What herbals do you recommend in addition to the abx? Heather

My dd didn't react too well to minocycline for mycoplasma - increased agitation, anxiety - so we are about to make the switch to rifampin ourselves. I'll be interested in how your son does. Good luck with it. Heather

This only applies to generics, so if you have a generic of the drug you have to carefully scrutinize the label and the manufacturer info should be on it. If you still can't find it, ask your pharmacy where on their labels they print that info.

Smarty, I just sent you a message. Heather