LNN

This seems to be a common issue among some of his patients. If you search the forum archives (search bar is in the upper right corner of the page) under "Dr T" you may find previous discussions on the matter. The forum generally tries to avoid doctor bashing and if this thread turns too negative, it will likely be locked at best or taken down at worst. So if others have strong feelings, it's best they contact you via personal messaging (again, look to the upper right corner under your login name to access your mailbox).
 
Many doctors seem to have polarizing effects on the Pandas parents - some love a particular doctor and get defensive when shortcomings are pointed out, while others feel compelled to share their negative experiences as a warning of sorts. The complaint about not being able to contact a doctor for follow up is a common one not limited to this doctor. But that doesn't excuse the behavior. You paid for a consult and were given a promise directly from him that he'd get back to you with instructions. You are not asking for something you didn't pay for or that he didn't offer to provide. Enough time has passed and you're entitled to the guidance you have a right to expect, IMO. I would call, every day if necessary, Stay professional and respectful but also persistent. However, if it proves to be too much work to continue the relationship, then it may become time to consider other doctors.
 
In the 6 years I've been on this journey, I worked with 3 different specialists and had passing conversations (at conferences) with two others until I found the right partner. Each has their strengths and weaknesses. This is a bit like dating - a matter of finding the best fit. Each doctor has a different perspective on this disease and how wide a net they're willing to cast in terms of testing and treatments. The right doctor for you will be the one who's willing to look in the right place, given your daughter's symptoms/history.
 
I would continue to contact Dr T for further guidance/lab slips but also clarify whether there will be a charge to review the results, or ask if the results can be sent to your family physician. If you ultimately decide to seek another doctor, you may want to post the things you're looking for - do you want mainstream or integrative or naturopath or homeopath? Do you want someone who can do IVIG? Do you want long term antibiotics or would you prefer to use naturals? What geographic area can you travel to? Then people can message you with their own experiences.

If you're told a facility or doctor doesn't support Pandas, it means they won't use antibiotics as part of their protocol. I don't think there's a quick cure for Pandas/Pans. But I do think there are many things you can do to restore health and reduce the chances and severity of future flares. But my best advice is to work with an integrative doctor who's Pans friendly rather than wasting time and money chasing a quick cure. This is a marathon, not a sprint.

I believe there's a Panda-friendly doctor in the Charlotte area - you can check the thread "Doctors who've helped us" that's pinned at the top of the list of discussions. You may also want to look for an osteopath, who tend to be of the same mindset as naturopaths except that they have MD's and can prescribe antibiotics and other medications if needed, which a naturopath can't.
 
The tests you describe are these:
1. ASO and Anti-DNase B antibody titers
Here's Quest Diagnostic's descriptions that you can print out for a doctor: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=265 and http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=256
 
2. Mycoplasma pneumonia Quest info: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=34127 or this test http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=15498
 
3. Anti-Roseola - couldn't find info on that one.
 
4. Mono - is caused by the Epstein-Bass Virus (EBV). The Quest test is: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=6421 The problem with this test is that once you've had the virus, certain markers will show positive for life, so it doesn't prove there's an active infection. 95% of us have had EBV at some point in our lives, so this isn't a great test unless you get a positive on the marker that shows early infection (IgM). So you might be better with this one that looks for DNA of the virus: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=34179
 
5. Coxsackie - Quest test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7656
 
6. Lyme - the test Dr T or most any other doctor you might see locally is pretty useless because the widely used test doesn't look for the two markers that are unique to lyme. The lab most of us here have used for Lyme is from Igenex. You may have a hard time getting a doctor to sign the order form, but it can be signed by anyone with who can call themselves DR - a chiropractor, a naturopath (not sure about a dentist). It won't be covered by insurance and is $200 but you can submit your own insurance claim and might get reimbursed at the out-of-network rate (but you'd have to pay up front). Dr T feels Lyme is only present in about 1% of Pandas kids, which anecdotally from the moms on this forum, is simply untrue. At least a third of the parents I've met on the forum have found lyme to be a factor. You may want to list your daughter's symptoms, but if they include brain fog, rages, muscle or joint pain, frequently swollen lymph glands, vision issues or light/sound sensitivity or other things that don't appear on NIMH's list of traditional Pandas symptoms, then Lyme may be worth considering. If you decide to test, the test I'd start with is Basic Panel 4090 http://www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf and you can find additional info at www.igenex.com
 
7-8 - Thyroid Panel - this will screen for several thyroid measurements. Quest test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7444
For help understanding thyroid tests an symptoms, you can start with www.stopthethyroidmadness.com The owner of the site is a bit angry and definitely has a bias, but it's a good place to get a lot of information from one place.
 
9. Lupus - Some parents have had this test and seen results that were alarming, yet their kids didn't have lupus. Pandas can trigger some of the markers seen in lupus. Personally, I'd only test if your daughter had any lupus symptoms. However, lupus is a serious disease, so depending on your financial and insurance situation, you may decide to test.
 
10. B12/Folate - not sure if this means a blood test to check B12 and folate levels. It's not a bad measurement to have provided you work with a doctor who's willing to do follow-up testing and knows how to treat any abnormal results, which would indicate one roadblock in methylation. The quest test is http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7065 If you get an abnormal result, you can post in a new thread and some of us can help you with follow up suggestions.
 
11. Pneumoccocal titers - this tests the immune response to the pneumonia vaccine your child probably received as a toddler. It can be used to see if the immune system responded correctly and if the vaccine provided some immunity. if your child doesn't mount a robust response, then you can re-administer the vaccine, run the titer test a second time and possibly build a case for insurance to pay for IVIG, arguing that your child is immune-deficient. The problem is that it requires re-vaccination, which does carry some risk for a flare with some Pandas kids, particularly if they have some current or chronic infection. For me, this test didn't give particularly helpful info for the cost. But again, depends on your situation. The Quest test is http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19564 if your child had the vaccine against 14 pneumonia strains or http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19563 if your child is older and only had the vaccine against 7 strains.
 
I list the Quest links because Quest is a national lab. But you don't have to use them. Labcorp and regional labs would have equivalent tests and you could print these links out and let your doctor order from the lab s/he prefers.
 
If you do end up having to go to a different doctor, they may or may not be willing to order all these tests and you may or may not be able to afford them all at one time, depending on your insurance. So my personal opinion on which ones I'd do first goes like this: 1, 2, 6, 10, 5, 4, 7/8, 3, 9, 11 But I have no medical background and don't mean this as medical advice. Just the opinion of a mom who's spent too much time on this forum.
 
You may want to post your daughter's primary symptoms, her age and how long things haven't been quite right. Sometimes, people can brainstorm and share their own experiences with similar issues. And don't feel bad about diets - we could only survive 9 days of gluten free, GAPS would never fly here either.

This seems to be a common issue among some of his patients. If you search the forum archives (search bar is in the upper right corner of the page) under "Dr T" you may find previous discussions on the matter. The forum generally tries to avoid doctor bashing and if this thread turns too negative, it will likely be locked at best or taken down at worst. So if others have strong feelings, it's best they contact you via personal messaging (again, look to the upper right corner under your login name to access your mailbox).
 
Many doctors seem to have polarizing effects on the Pandas parents - some love a particular doctor and get defensive when shortcomings are pointed out, while others feel compelled to share their negative experiences as a warning of sorts. The complaint about not being able to contact a doctor for follow up is a common one not limited to this doctor. But that doesn't excuse the behavior. You paid for a consult and were given a promise directly from him that he'd get back to you with instructions. You are not asking for something you didn't pay for or that he didn't offer to provide. Enough time has passed and you're entitled to the guidance you have a right to expect, IMO. I would call, every day if necessary, Stay professional and respectful but also persistent. However, if it proves to be too much work to continue the relationship, then it may become time to consider other doctors.
 
In the 6 years I've been on this journey, I worked with 3 different specialists and had passing conversations (at conferences) with two others until I found the right partner. Each has their strengths and weaknesses. This is a bit like dating - a matter of finding the best fit. Each doctor has a different perspective on this disease and how wide a net they're willing to cast in terms of testing and treatments. The right doctor for you will be the one who's willing to look in the right place, given your daughter's symptoms/history.
 
I would continue to contact Dr T for further guidance/lab slips but also clarify whether there will be a charge to review the results, or ask if the results can be sent to your family physician. If you ultimately decide to seek another doctor, you may want to post the things you're looking for - do you want mainstream or integrative or naturopath or homeopath? Do you want someone who can do IVIG? Do you want long term antibiotics or would you prefer to use naturals? What geographic area can you travel to? Then people can message you with their own experiences.

If it's any comfort, your story sounded like mine in many ways. Sudden onset changes, passionate rages, temporary improvements, feelings of despair...you'll find lots of parents here that understand what you're going through.
 
My son got sick when he was 5. It was probably triggered by a known tick bite on his scalp that we didn't pay much attention to (something I deeply regret in hindsight). We saw erratic behaviors, extreme anxiety, OCD - but didn't know what to make of it. Then he got better for two months and we shrugged and moved on. Then he got strep and went off a cliff. We asked about Pandas, asked for antibiotics beyond the 10 days prescribed and were told Pandas was controversial and the 10 days would've done the trick if it were Pandas. Then we were offered Prozac, Tenex, Haldol and Risperdal - for a 6 year old! Fired several doctors and pleaded with sympathetic walk-in clinic nurses for 10 days of antibiotics when things got awful. We then spent 3 yrs seeing Pandas experts, using long-term antibiotics, prednisone, tonsillectomy, plasmaphersis, IVIG - all helped but only temporarily. We could get him better but couldn't get him to stay better. A standard western blot lyme test was negative. But we finally used Igenex to test for lyme and that was our missing piece.
 
We started seeing an LLMD (lyme literate MD) and within 3 weeks of using a combination of antibiotics (abx), rather than monotherapy abx (only one abx at a time), we knew we were on the right track. it took 2 more years to get rid of the lyme because he'd had it for so long, but while there were setbacks, we saw progress that he was finally able to sustain. In my son's case it was both lyme and Pandas that we had to treat. He's done with lyme treatment but will still have a Pandas response if he gets a bacterial infection. But we put him on abx at the first signs of symptoms and he's usually back to normal w/in 2 weeks now - a far cry from the old days.
 
Given that your daughter has known deer tick bites, I'd urge you to go to the top of the Pandas/Lyme forum home page and scroll down to the Pinned Thread for Lyme and read thru them, especially the links to articles about lyme testing http://latitudes.org/forums/index.php?showtopic=10804. In lyme literature, you won't see the neuorpsych symptoms discussed much, which makes it seem like your kid can't have lyme. It doesn't seem to match. But the reason Pandas was renamed to PANS a few years ago was because many of us were finding that our kids had Pandas except that the trigger was lyme, or a virus, rather than strep. There's also research showing that lyme and strep share some proteins so that they look like the same invader to a confused immune system. One protein in particular - an M protein - is also present on cells in the Basal Ganglia of the brain (thought to be the target in Pandas and sydenham's chorea) and in cells in the aortic valve (which is what causes the immune system to attack the heart in rheumatic fever)
 
With your daughter's intense rages and chronic struggles and tick bites, I'd put lyme testing at the top of the list. You may want to start a new thread asking for Lyme friendly doctors in the VA/NC area or go to Lymenet http://flash.lymenet.org/scripts/ultimatebb.cgi and ask for referrals for a pediatric LLMD in your area. Kids are not adults in little bodies. They require a doctor with a pediatric background - and they are hard to find! You may need to travel farther than you'd like - and most have waiting lists of 3-6 months. None take insurance because they feel they need to spend more time with a patient that insurance will pay for. But you pay out of pocket and then submit your own claim to insurance and sometimes you can get reimbursed at the out-of-network rate. In the meantime, you can try to get a local dr. to order the igenex test for you.
 
You can also try to have the ASO/AntiDNase B titers done, but since your daughter was already negative once, it may not be positive even if she has active strep. Some kids, like my son, don't produce a positive titer test even when you know they have strep (he had a positive throat swab but negative titer test 3 weeks later). Because treatment for chronic lyme is long-term combinations of abx, if strep is a part of the picture, you'd be tackling both infections. But simply treating strep w/one abx wouldn't be sufficient to treat lyme. Some people have also treated successfully with herbs, but the first step would be to see an LLMD and get appropriate testing.
 
One reason your daughter may have temporarily improved on vitamins is that any chronic infection will deplete the body of resources. Vitamins and supplements become really important, but aren't enough in and of themselves to keep the body in a good place. Antibiotics are needed to help the immune system get the job done.
 
It took 5 yrs, but my son is now a very happy, healthy kid. He went from having a teacher think he was autistic and cognitive testing at borderline below normal to someone who's lowest grade is a B+ and is testing above normal. Rages are gone, OCD is gone, life is good. It's a matter of finding that needle in the haystack and getting the right doctor to help you on a long journey. PM me if you'd like to talk offline.

This seems to be a common issue among some of his patients. If you search the forum archives (search bar is in the upper right corner of the page) under "Dr T" you may find previous discussions on the matter. The forum generally tries to avoid doctor bashing and if this thread turns too negative, it will likely be locked at best or taken down at worst. So if others have strong feelings, it's best they contact you via personal messaging (again, look to the upper right corner under your login name to access your mailbox).
 
Many doctors seem to have polarizing effects on the Pandas parents - some love a particular doctor and get defensive when shortcomings are pointed out, while others feel compelled to share their negative experiences as a warning of sorts. The complaint about not being able to contact a doctor for follow up is a common one not limited to this doctor. But that doesn't excuse the behavior. You paid for a consult and were given a promise directly from him that he'd get back to you with instructions. You are not asking for something you didn't pay for or that he didn't offer to provide. Enough time has passed and you're entitled to the guidance you have a right to expect, IMO. I would call, every day if necessary, Stay professional and respectful but also persistent. However, if it proves to be too much work to continue the relationship, then it may become time to consider other doctors.
 
In the 6 years I've been on this journey, I worked with 3 different specialists and had passing conversations (at conferences) with two others until I found the right partner. Each has their strengths and weaknesses. This is a bit like dating - a matter of finding the best fit. Each doctor has a different perspective on this disease and how wide a net they're willing to cast in terms of testing and treatments. The right doctor for you will be the one who's willing to look in the right place, given your daughter's symptoms/history.
 
I would continue to contact Dr T for further guidance/lab slips but also clarify whether there will be a charge to review the results, or ask if the results can be sent to your family physician. If you ultimately decide to seek another doctor, you may want to post the things you're looking for - do you want mainstream or integrative or naturopath or homeopath? Do you want someone who can do IVIG? Do you want long term antibiotics or would you prefer to use naturals? What geographic area can you travel to? Then people can message you with their own experiences.

If you're told a facility or doctor doesn't support Pandas, it means they won't use antibiotics as part of their protocol. I don't think there's a quick cure for Pandas/Pans. But I do think there are many things you can do to restore health and reduce the chances and severity of future flares. But my best advice is to work with an integrative doctor who's Pans friendly rather than wasting time and money chasing a quick cure. This is a marathon, not a sprint.

If you're told a facility or doctor doesn't support Pandas, it means they won't use antibiotics as part of their protocol. I don't think there's a quick cure for Pandas/Pans. But I do think there are many things you can do to restore health and reduce the chances and severity of future flares. But my best advice is to work with an integrative doctor who's Pans friendly rather than wasting time and money chasing a quick cure. This is a marathon, not a sprint.

Yes, glutathione is a really important part of detox. Here's an article you might find helpful: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html
 
I think of detox as any past of the body's garbage/sanitation system. For starters, you have the two main waste treatment plants - the liver, which is like the garbage dump and the kidneys, which are like wastewater treatment plants. When you take lots of meds, your body has to work a little harder processing these and eliminating the waste left when the active ingredients of the meds are absorbed. But they also have to work harder when your body needs to eliminate dead cells (from the self and from invaders), toxins in our foods and environments (chemicals, metals, molds, allergens). So anything you can do to support these organs can be beneficial - e.g. drinking lots of water - is generally a good thing.
 
However, as Rowingmom points out, some supplements that are generally "good" for the body - SAMe or milkthistle for the liver, NAC, alpha lipoic acid, B6 - for increased glutathione - can't be handled by individuals with certain methylation defects. If you're an "overmethylator" than SAMe won't agree with you. If you have a CBS gene mutation that's active/expressing, then you need to avoid NAC, alpha lipoic acid, Epsom salts and milkthistle because of their sulfur content. If you have a CBS mutation, you need to take the P-5-P "version" of B6 and not regular B6. Having an active CBS mutation makes detox much harder. So while detox is good for everyone, how you get there is a unique path.
 
Many people also support detox by taking binders - things that bind to bad stuff as it's making the journey thru the bowels, to make sure it gets eliminated and not reabsorbed thru a leaky gut. Charcoal, bentonite clay, chlorella - are all talked about as aids. My personal experience is that charcoal did very little, tho it's a go-to in ERs for poisonings, so obviously it does have some effect. But a nurse once told me to be careful with prolonged use b/c it can mess with your electrolyte balance. Same with clays. I didn't like chlorella for 2 reasons - DS had to take 45 pills/day - 15 three times per day - which was a huge reinforcement to him that he was "sick" and I think it did little for detox. My second concern with it is that the majority of it comes from the China Sea, which was impacted by the nuclear accident at Fukushima 3 yrs ago. I can't get behind giving something that could be tainted with radiation as a detox supplement. JMHO.
 
We use magnesium (doses that produce daily BMs but don't cause loose stools - which for my kids is 200mg/day). We use P-5-P and psyllium husk and lots of water. My DS has issues with mold, which peak in the fall and during raining weeks in the spring. So we periodically use cholestyramine when it's this time of year and he develops PANS symptoms like hyperactivity, eye tic and such. The cholestyramine works great for the eye tic, not as much for the hyperness, but then, I'm conservative in dosing.
 
Can't imagine getting my kids to imbibe vinegar
 
You also asked on another thread about CPY450 - we did get this info via our 23andMe testing and our LLMD did say he'd have used the info to adjust medication/antibiotic dosing, but at that point, we were pretty much done with medications. But knowing the status of the different liver pathways will help you increase or decrease standard dosing levels for a given medication, so it's a helpful piece of info to have.
 
As far as overall methylation, which I fund to make a huge difference in my kids, this introductory article may help when it comes to understanding how detox and methylation are intertwined...http://autismnti.com/images/Website-_Yasko_Education.pdf

I know this doesn't address the questions you've asked, but if your DD has been battling this for 7 yrs and never feels "good" then it really raises a red flag to me that there's something - infection, environmental (e.g. mold), nutritional (e.g. methylation issues), that hasn't been tackled.
 
You sound like a mom who's really done everything to advocate for your child and I don't want to sound like I think every kid has lyme. I don't. But you mention who your dr is and I know he feels that lyme is not an issue for most of his patients, despite the high prevalence of lyme in the northeast and the large number of Pans families who've not recovered with "just" Pandas treatments and then went on to get better with lyme treatments. He also relies on a standard western blot, which is not a good test. Pandasnetwork.org has posted something written by your doctor on his lyme views which are 180 degrees opposite of my own experiences over the past 6 years. Of course I'm not a doctor. Don't mean to suggest I have more answers than anyone else. But...if someone says after 7 years of a diagnosis that they never feel good, and their lives (and the family's) are still being turned upside down, then something is not right.
 
I think Nancy has given you some great insights (as always). But if you're only relying on this doctor's rule out of other known Pans triggers, I really hope you'll consider another opinion. Maybe it's not lyme, but it sure sounds like some stone still needs unturning. This doesn't sound like a strep-only problem.

If you're uneasy about adding meds and decide to stop things, I'd suggest stopping only one thing at a time. If you stop everything and she tanks, you won't know which thing was responsible.
 
However, if bloodwork shows signs of an active infection, you may want to continue with antibiotics/antivirals and instead of adding pysch meds, look into the topic of methylation. Methylation is a process that does many things, like create cell energy and promote cardivascular health. But it also helps maintain neurotransmitter balance and if you have a nutritional deificiency or a genetic issue that intereferes with this process, you can end up with a chronic mood issue. Once I understood where my kids had genetic roadblocks in their methylation processes, I was able to give them specific doses of vitamins/minerals and help them re-gain mood balance. (the solutions for each kid were very different).
 
Even my son, who struggled with chronic lyme and still has a Pandas response to bacteria, has seen significant improvements in anger/anxiety/focus that we couldn't achieve with antibiotics alone. You can go to the pinned threads at the top of the forum called "helpful threads" or something like that for a post from me that lists links to read up on (I think it's post #17 or 18). This is also a good primer http://autismnti.com/images/Website-_Yasko_Education.pdf Pay paticular attention the the section on the BH4 cycle.

if it makes you feel better, I too joined in 2009 and am on my 3100+ post - so you're not alone. I agree with SSS- push for a minimum of 4 weeks of doxy and keep him out of sunlight. But you may want to get on the waiting list of an LLMD so that if a few months from now things still seem wonky, you're already on someone's list. You can always cancel a week before your apt. Go to lymenet.net to ask for dr recommendations near you - or ilads.org
 
Lyme is a nasty beast and you really need someone with experience to help you - someone who's seen it all before. Getting with the right dr made all the difference for DS. Get yourself to a good LLMD. Once you get over the sticker shock, it will be well worth it.

I predict he will continue to make you so very proud! Sounds like he's turning out to be just like his mom - a true privilage and joy to know!
 
My brag - DD is on day 6 of falling asleep alone - not without drama - but getting it done. Your parents inspired me to re-try the Ferber method

I predict he will continue to make you so very proud! Sounds like he's turning out to be just like his mom - a true privilage and joy to know!
 
My brag - DD is on day 6 of falling asleep alone - not without drama - but getting it done. Your parents inspired me to re-try the Ferber method

I predict he will continue to make you so very proud! Sounds like he's turning out to be just like his mom - a true privilage and joy to know!
 
My brag - DD is on day 6 of falling asleep alone - not without drama - but getting it done. Your parents inspired me to re-try the Ferber method

This is a good article on explaining the biotoxin pathway and why mold toxins cause more trouble for some than others http://www.survivingmold.com/diagnosis/the-biotoxin-pathway and this one http://betterhealthguy.com/images/stories/PDF/Townsend_Mold_Mycotoxins_Overlooked_July_2014.pdf
 
If your child is sensitive to mold toxins and has trouble clearing the toxins, then the focus is on both removing the source of the mold AND removing the toxins from the body. Apparently, mold toxins can stay in some bodies even after the source is gone and will circulate around until you help it clear. To do that, I've come across three strategies.
 
One is to take things that help the liver work more effectively - supplements like milk thistle can help upregulate certain liver enzymes/pathways provided you aren't allergic to ragweed (milk thistle is in the ragweed family) or aren't sensitive to supplements high is sulfur. Water and lots of fluids also help detox via the kidneys.
 
The second one is to ingest binders - things that bind to toxins within the intestines and are excreted rather than letting those toxins get reabsorbed thru a leaky gut back into the blood stream. Binders include activated charcoal (1-5 capsules/day taken away from all medications and supplements), chlorella (10 capsules/3 times per day away from meds), psyllium husk, and cholestyramine - a cholesterol-lowering drug that binds to bile during digestion and also binds to toxins in the process. The first 3 are OTC and cholestyramine is a prescription.
 
Third, you can take supplements that increase the body's production of glutathione - a major antioxidant. These include alpha lipoic acid, vitamin C and n-acetylcysteine (NAC). But if you are sulfur-intolerant, alpha lipoic acid and NAC should be avoided (sulfur intolerance can be determined thru experience or by genetic testing thru 23andMe).
 
Finally, in addition to detox, you can also focus on reducing inflammation. Motrin 3x/day, resveratrol (an OTC supplement), curcumin (great for some kids, not tolerated by others) and some other herbs. Epsom salt baths help some people as well. And of course, time. Support the body, remove the insult, and give the body time to heal.

FWIW, at 7 months into lyme treatment (and 2.5 yrs on single abx for Pandas), DS was only at 75% baseline. But that was an improvement from the time we'd started (maybe 60% baseline). So with all you've done I too would be looking for signs you were on the right track but also realizing it's a very long haul. It took us 2.5 yrs of combo abx to be at a point we could stop abx altogether.
 
Are you pulsing tindamax? If it's one you're still using, maybe take a holiday. Tindamax was brutal for DS and after only 5 weekends at 1/2 dose, he was in a constant herx that brought tics back in force. We stopped the tindamax and it was like the sun coming out after a hurricane. Cefdinir also produced a strong herx, as it crosses the BBB - lots of emotional outbursts. So consider rotating, pulsing or taking a break from one or more abx for a bit.
 
I agree with your LLMD that mold can be a giant money suck and testing is ambiguous. But I found the blood work that Shoemaker lists somewhat helpful http://www.survivingmold.com/diagnosis/lab-tests - we didn't do all of them. Our LLMD did the ones he felt were most helpful regarding inflammation.
 
In terms of environmental testing, we didn't have the budget for a $400 ermi test that wasn't going to tell us specifically where a problem might be. So my cheap way of getting peace of mind was this: I bought $10 mold test kits for the bedrooms, the game room, and the basement. Instead of doing a settle test for an hour as suggested on the directions, I left the plate exposed for 24 hrs. - one major fault of the settle plate testing is that it may not capture lighter mold spores that hang in the air, so an hour exposure will bias your results toward molds that are heavier. So a 24 hr exposure gets you a somewhat better sample. I then sent the plates that grew stuff to the lab for species identification. My reports came back with 3 species, all of which are ubiquitous outdoors. I was at least able to feel a little reassured that there were no "bad" species like aspergillus in the air and my husband was able to talk me out of taking a sledgehammer to the sheetrock in some irrational fear there was horrible stuff growing behind the walls. Now I realize this is far from a fault-free plan. But it fit into my $100 budget and gave me a little peace of mind. I also know that DS's tics come and go, making it less likely he's in a chronically sick building, which helped me give the settle plates a little more validity.
 
DS has shown inflammation on the Shoemaker markers from time to time. So our plan is to use cholestryamine the same way you might use a steroid-burst. For a brief time, to try to lower symptoms that way you'd use an antihistamine to alleviate allergy symptoms. Haven't had to pull the trigger on that one yet. But maybe talk to your LLMD about blood work and possible short term mold treatments - if you feel that herxing isn't more of a cause for the tics. Inflammation and poor detox have always been behind DS's tics when they crop up.
 
Finally - only my personal opinion - but IVIG caused a huge herx for DS and in the short-term, did much more harm than good. Some have had better results, so there's no universal answer. But just know there's a downside. Post-IVIG was by far the worst 10 weeks of our 5 year journey. Make sure you've explored other options and be comfortable with IVIG - don't do it because you think you "should". Do it because it makes sense for your individual situation and budget.
 
Hang in there....

What medications is your DD taking? Some people can't tolerate medications or supplements that are high in sulfurs.
 
Three in my family have a genetic mutation on our CBS gene that reduces our ability to "detoxify" sulfurs and this puts a heavier load on the liver. I was taking N-acetylcysteine - a supplement good for detox and mucus thinning - and it seriously raised my ALT and AST liver enzymes into the 70's (normal is below 50). I stopped the NAC and re-tested a month later and the enzymes were in the 20s. My DH recently switched his blood pressure meds because one was high in sulfur and his liver enzymes were elevated (haven't re-tested yet). My DD can't tolerate milk thistle for the same reason - tho milk thistle is great for liver detox, it's also a sulfur and it's not the right supplement for her.
 
So maybe it isn't a question of whether the meds are "working" to fight infection, but rather whether they're the right meds for her body. If she still has symptoms, then I'd say you're not done with treatment. Most lyme docs continue to treat until you're 2 months symptom-free. You may instead want to discuss switching meds rather than stopping treatment altogether.

I'd limit the amount of time spent on the details of Pandas - keep it simple - an allergy to strep, a sudden bundle of behavioral symptoms, medical treatments available...
 
But I'd want new teachers to know two things -
 
1. many, many behavioral issues are medical - not bad parents, bad kid, etc.
 
2. always believe in and support the child. Let him know you can see past the behaviors and know that there's a bright, valuable kid inside. Yes, you have to teach to the child's current abilities, but when a parent says their child is "more" than what you can see, believe them and resist the temptation to mentally assign the child to the "less intelligent" or "problem child" category of your students.
 
My son's teachers have been consistently amazed at his abilities and character once they've been able to see the "before and after" kid. The ones who believed me and somehow reached the "inner kid" are the ones who've made a lasting difference. They helped my son build self-confidence and resilience because he know they believed in him.

I'd limit the amount of time spent on the details of Pandas - keep it simple - an allergy to strep, a sudden bundle of behavioral symptoms, medical treatments available...
 
But I'd want new teachers to know two things -
 
1. many, many behavioral issues are medical - not bad parents, bad kid, etc.
 
2. always believe in and support the child. Let him know you can see past the behaviors and know that there's a bright, valuable kid inside. Yes, you have to teach to the child's current abilities, but when a parent says their child is "more" than what you can see, believe them and resist the temptation to mentally assign the child to the "less intelligent" or "problem child" category of your students.
 
My son's teachers have been consistently amazed at his abilities and character once they've been able to see the "before and after" kid. The ones who believed me and somehow reached the "inner kid" are the ones who've made a lasting difference. They helped my son build self-confidence and resilience because he know they believed in him.

I'd limit the amount of time spent on the details of Pandas - keep it simple - an allergy to strep, a sudden bundle of behavioral symptoms, medical treatments available...
 
But I'd want new teachers to know two things -
 
1. many, many behavioral issues are medical - not bad parents, bad kid, etc.
 
2. always believe in and support the child. Let him know you can see past the behaviors and know that there's a bright, valuable kid inside. Yes, you have to teach to the child's current abilities, but when a parent says their child is "more" than what you can see, believe them and resist the temptation to mentally assign the child to the "less intelligent" or "problem child" category of your students.
 
My son's teachers have been consistently amazed at his abilities and character once they've been able to see the "before and after" kid. The ones who believed me and somehow reached the "inner kid" are the ones who've made a lasting difference. They helped my son build self-confidence and resilience because he know they believed in him.

I'd limit the amount of time spent on the details of Pandas - keep it simple - an allergy to strep, a sudden bundle of behavioral symptoms, medical treatments available...
 
But I'd want new teachers to know two things -
 
1. many, many behavioral issues are medical - not bad parents, bad kid, etc.
 
2. always believe in and support the child. Let him know you can see past the behaviors and know that there's a bright, valuable kid inside. Yes, you have to teach to the child's current abilities, but when a parent says their child is "more" than what you can see, believe them and resist the temptation to mentally assign the child to the "less intelligent" or "problem child" category of your students.
 
My son's teachers have been consistently amazed at his abilities and character once they've been able to see the "before and after" kid. The ones who believed me and somehow reached the "inner kid" are the ones who've made a lasting difference. They helped my son build self-confidence and resilience because he know they believed in him.

I don't have any personal experiences. My impression is that Rogers has a good reputation in the OCD community. But my impression is that they view treatment strictly from a therapy+pharmaceutical viewpoint. I don't know that they'd work with you on a bio-medical approach for Pandas. If you have tried psychotropics in the past with positive results, the in-patient therapy may be beneficial. But if you don't want to use psychotropics or have had a bad experience in the past, you may want to ask some questions before admitting your son. I don't know, but I suspect you'd be waiving certain rights over medication protocols and compliance issues. I suspect they face the need to force patients to take medications, so if you go this route, make sure you understand what you will and won't be able to do ahead of time.
 
If you do feel there's an infection behind your son's condition, there are some blood tests that can give you some sort of support for this, if you haven't done them already.
 
C3d immune complex shows if the body's immune compliment system has been activated. It can't tell you what sort of infection is there, but a high result will show that the body is fighting something.
 
C3a and C4a compliments are other immune compliement measurements that are most often elevated as a result of lyme or mold.
 
CD57 is a measurement of natural killer cells. A low number can suggest a chronic infection may be suppressing the immune system. It is often used in the lyme community as a way to see how robust the immune system is.
 
There are other tests as well. It depends on what sort of infection or environmental issue may be at play. But the above are available by most commercial labs and are generally covered by insurance. The C3a and C4a sometimes require special handling kits because often they get sent out to a specialty lab as a sub-contractor. So if you go that route, call the lab ahead of time. They may need a day or two to order the kit before you go there for the blood draw.
 
Only you can weigh the pros and cons. I know you just want to bring your child and family relief. And it's hard to make informed, rational choices when things are so severe. So no one can tell you what the "right" answer is for you. But I would ask as many questions (including worst case scenario questions) as you can ahead of time so you can make the best decision possible.

As SSS says, you can have both Pandas and Lyme. It's why the NIMH has coined the term PANS to include non-strep triggers. Based on your description - especially the rages, brain fog and the failure to achieve full remission under a single antibiotic therapy, I'd agree with the decision to pursue Lyme and see where it gets you. Testing for Lyme is horribly inaccurate but Igenex is among the best of options. The fact that previous Lyme tests were negative doesn't mean much.
 
I don't post on the forum much anymore, but your story was too close to home for me to not chime in. My son was dx'd with Pandas and treated by two of the top Pandas docs for 2.5 yrs. He underwent long-term abx, steroids, t&a (tonsillectomy), plasmapheresis and IVIG. He could never sustain more than 2 months of improvement before things tanked over and over again - for 2.5 yrs - from age 6-8. His Quest western blot for Lyme was negative. I felt so hopeless. Finally at the urging of my BFF, we tested thru Igenex and my son had 5 bands show up. We started with an LLMD who put my son on 3 abx - azithromycin, augmentin and bactrim (because LLMD suspected bartonella due to rages). Within 3 weeks, I knew we were on the right track. It still took 2.5 yrs to get to full healing. But he got there!
 
My son is now 11 and has been off all medications for 15 months. He is in the best place of his life. He remains susceptible to Pandas flares if he gets sick but the episode passes quickly now that we have a dr. who will prescribe abx at the first signs of symptoms. Hoping this fades as he gets to the other side of puberty. He remains sensitive to mold and will develop tics and brain fog if there's a mold issue. But these too resolve once we find the source. So is he "cured"? No. Is he in full remission and a totally happy, healthy kid? Absolutely. This week he's spending 4 hrs/day in the 90 degree heat doing a crossfit camp - lifting weights, rope climbing, running, squats...and loving it. The camp is run by last year's math teacher and today, the teacher told me "your son blows me away! He is so focused and confident and determined. He's come so far - I'm just amazed." This is a kid who was consumed by anxiety, OCD and brain fog a few years ago, a kid who missed more than 20 days of school because he couldn't get off the couch due to muscle pain.
 
A long and very winding road to recovery? Yes! Permanent damage? Absolutely not. Give the lyme protocol some time and see where it gets you. The proof is in the pudding, not in a lab test.

You should ask your doctor to do 1) a rapid strep test (a throat swab) 2) a throat culture (a 24-48 culture, sample taken at the same time as the rapid swab) and 3) two blood tests - a strep ASO titer test and an Anti-DNaseB titer test. If your pedi won't do this, take your DD to a walk-in clinic and request these tests. There's a beginner's overview booklet for parents who are new to Pandas, sold by this forum http://latitudes.org/store/should-you-consider-pandas-ebook/ that might be helpful as well.
 
If the other family is happy with their Pandas doc, it may be worth getting an appt. But you want a doctor who has experience and is willing to try multiple treatments. Pinned at the top of the forum under "helpful threads for Pandas" you'll find a list of doctors by state who may be helpful. Or you can post the general area where you live and ask for suggestions. It sounds like Pandas is at least worth exploring for your daughter.