mama2alex

Air hunger can be a symptom of Babesia, which often accompanies Lyme, Bartonella and other tick-bourne infections. You should consider having her evaluated for these infections by an experienced Lyme-literate doctor. You can ask on this forum for doctor recommendations in your area. Many kids who have PANDAS/PANS also turn out to have Lyme & co., so there's a good chance someone on the forum will know of a good doctor in your area who can investigate this for you.

Given all the symptoms you're describing, I would say yes, Lyme & co are a definite possibility. I would ask for recommendations for a good LLMD in your area and let them decide what tests need to be done. It's worth putting your "pride" aside, and a good experienced LLMD will have seen the behavior before and won't bat an eye. One thing we've found that helps with blood draws is Emla cream, which numbs the skin and dulls the pain of the needle. We also resorted to bribes during the period when our DS had a needle phobia.

Sorry, I'll see if I need to clear out my mailbox. Yes, our dentist takes adults and children - Dr. Hilado at Sunnyvale Dental Group. 408-739-9050. Look on the IAOMT.org website though, and see if you can find someone closer to you. And definitely look at websites and call a few places and ask lots of questions to make sure you're comfortable with how they practice. They are not necessarily all equal.

Considering the timing, just thought I'd ask if he had any vaccines around this time frame (school about to start, flu shots being pushed for Fall) - even a few weeks before. I ask because a friend of ours (an adult) lost most of the use of both arms and much of his lung function (not sure if his lung collapsed or not) after an H1N1 flu shot a few years ago. He has regained most of the use of his arms but still only has partial lung function. If a vaccine was part of the picture, this doesn't give you an answer on how to treat, but would definitely be something to keep in mind in the future. Mainstream doctors would never ask this question or even entertain the idea that a vaccine could have this affect, but it happens.

For an ASD (or PANS) child, I'd highly recommend going to a "mercury free" dentist. We found ours through the iaomt.org website, which is a great resource on safe dental practices in and of itself. Our dentist is in-network, but only uses materials/substances that are safe for sensitive individuals (no fluoride, infrequent x-rays only as needed, ozone to kill bacteria and stop a cavity early, no mercury/amalgams, etc).

I strongly believe my son has congenital Lyme, as he's had "issues" since birth and I had a mysterious rash before I got pregnant and then became very ill after he was born. Don't know where you live, but we have a great integrative doctor in northern CA (SF peninsula) who has been treating Lyme in adults and children for 9 years. He is also very well versed in mold treatment. We've been at this for 4 years and ds (now 14) is doing much, much better. At this point, I strongly believe that in addition to killing the bugs, nutrition and detox (not only flushing toxins out, but reducing/eliminating them from the immediate environment) are key in healing Lyme.

That's wonderful! Good for you guys!! Posts like this always give me hope.

Have you offered to let them speak to the doctors who treated you at NYU? I don't know how this all works, but you'd think a local doctor would be willing to oversee a treatment prescribed - and already given once, with no problems - by an expert in another city. Also, I don't understand why insurance approved IVIG at NYU, but won't cover it in a Florida town other than the one where you live.

I'm so sorry! Have you had a chance to read Cure Unknown by Pamela Weintraub yet? You will learn a lot about tick-bourne diseases, including why ID docs have such a different perspective from ILADS-trained Lyme-Literate MDs (and why most people dealing with Lyme get no help whatsoever from ID docs). That said, no difference in perspective could ever excuse that kind of rude, condescending and hard-hearted behavior toward a patient, especially a child. Hang in there!

You don't need a mold specialist to run an ERMI. Just call Mycometrics in NJ and they will send you the kit. You just vacuum a 6'x3' area for 5 minutes in a common area and one bedroom, then send in the dust. This will give you a good idea of whether you've got mold or not. If you don't, great! If you do, then you either need to move or find someone to help you figure out where the mold is so you can remediate. It can be anywhere, but seems less likely if you have a newer house and haven't had any known leaks/water damage. It seems worth "ruling out" though, since you haven't seen improvement with the Lyme treatment.

I wouldn't dismiss mold without further investigation. It is certainly one of the main things that can prevent a recovery from Lyme. Charcoal isn't the treatment of choice for mold and if he's in a moldy environment, treating it won't do much good anyway. The first thing to do is run an ERMI test on your home - it's $290. This will tell you if there's a high mold level in your home and you can make decisions from there.

Melanie, I'm not really understanding your description of the results. Which bands were positive for IgM and which were positive for IgG? What lab?

Who interpreted the results? A Lyme doctor will look at symptoms in combination with any positive (or even IND) bands and make a clinical diagnosis. Did you ever run an Igenex test? If so, you might want to post the specific results by band and get feedback here, because certain bands are more meaningful than others and just because the report says "negative" doesn't mean it doesn't contain hints that Lyme is probably an issue. Some people with Lyme just don't show any positive bands on antibody testing, even Igenex. That was the case for us. After years of occasionally rechecking for Lyme, and never getting a positive result, we finally did the Advanced Labs culture in spring/summer 2013. At that point, we believe I'd been infected for 18 years and my son for 13 (all his life). It's not species specific, but if he has the symptoms (PANS) and nothing is showing up on antibody testing, it can either be comforting to see that there aren't any spirochetes in the blood or enlightening to see that there are. I think doctors are starting to discover that its not just Burgdorfori that can make you sick, even if the CDC won't yet acknowledge it. He would need to be off abx for at least 8 weeks prior though - not sure if that's an option.

The first thing you need to do is figure out whether your home and/or her school (if she's attending) have mold. There's no point pulling out mold toxins when she's just taking them right back in from her environment. The best test is the ERMI from Mycometrics. Our doctor warned us that treating while still in a moldy environment could cause a very bad herx (and he refused to order the cholestyramine until we'd moved out or remediated). In the end, both my son and I herxed pretty badly anyway - his was anxiety and mine was pain/fatigue/brain fog. If you determine that your environment is moldy on top of her having the genetic predisposition, then I would treat. BUT as NancyD mentioned, you need a doctor who knows what they're doing, e.g. how to monitor whether the levels are coming down and when to move on to the other treatments for mold. Please proceed with caution. I'm not saying don't explore the mold issue, just be careful. Mold is nothing to mess with, as we've learned the hard way.

What's making you think autoimmune since IVIG and steroids have made things worse? Or did the pred make the psych issues better, but he caught a virus? I don't know anything about Stanford's clinic except they are not really considering Lyme as part of the picture (last I heard). What LLMDs have you seen in the Bay Area? We are here too and we have a wonderful doctor who uses an integrative and comprehensive approach (looks at all possible issues involved and uses all the tools) - Dr. P in Redwood City. He is good at figuring out complex cases and has seen a number of PANS kids now.

Melanie, I know you've had a long road. Have you had him evaluated for Lyme and other infections by an LLMD? Dr T doesn't really know the ins and outs of Lyme, but there are some great docs in that area who could figure out if that is a factor that might be impeding his recovery.

I don't know how it works for college, but for grade school and middle-high school, most states allow a philosophical and/or religious exemption in addition to medical. Have you looked into whether that's an option? The laws vary by state, but if you're lucky it's just a matter of filling out and signing a short form. The National Vaccine Information Center is a great resource.

Other sources could have been mom (in utero and breastfeeding), amalgams, and vaccines. Multi-dose flu vaccines still have the full amount and other vaccines (since about 2003) still contain "trace amounts," whatever that means. Also its in the air from pollution and all fish contain mercury - the smaller fish just have less. I don't know much about lead. I was diagnosed with mercury poisoning in 2003, and had to go through chelation. My doctor did not base his diagnosis on the hair test (although we did one initially); I guess they can be misleading. Once I'd had my amalgams safely removed, we did a "challenge" urine test, which means I took a chelating medication for a period of time and then ran a urine test. DAN! doctors are usually the most knowledgeable in this area.

What state do you live in? If no one answers this thread, I would start a new one with a topic such as "Need Pediatric LLMD in Illinois" (fill in your state). You can also go to the ILADS (International Lyme and Associated Diseases Society) website and contact them for a referral. http://ilads.org/ilads_media/physician-referral/

I agree with other members who've advised you to see a Lyme-literate MD right away. If you are having trouble making that leap of faith based on advice from people on the internet, please read the book "Cure Unknown: Inside the Lyme Epidemic" by Pamela Weintraub. This book will give you a more in-depth understanding of Lyme, its myriad symptoms, why an LLMD is the best doctor to see if you suspect Lyme, why the tests are so unreliable, why doctors frequently miss or misdiagnose it, and why seeing an infectious disease doctor will most likely be a waste of your time.

I would not use Tylenol as it is known to deplete glutathione, which is important for detox, among other things. If you Google glutathione and Tylenol, you can read up on this. We used Motrin after our son's two IVIGs.

Thanks for posting hopeny! He did a great job. They also featured a mom who was misdiagnosed for months with all the usual - chronic fatigue, fibromyalgia, lupus, MS, depression, making-it-up, etc. If you missed it, you can find the video clip on Under Our Skin's Facebook page.

It could be a herx. What are you doing for detox?

Everything you mentioned could be a symptoms of Lyme. There are no guarantees with Lyme, but it certainly couldn't hurt to go to an LLMD and see what they say. 3-4 years after the bite is definitely late stage, but many who've had it for years get better and sometimes even fully well, so absolutely worth a try.

IMHO, based on what you described, it would be wise to explore infectious triggers, including strep, Lyme and co-infections, mycoplasma and viruses. A Lyme-literate doctor (LLMD) can look for all of those infections, but not all PANDAS docs know how to properly evaluate for Lyme, so be careful there. You can go to the top of the forum and enter "North Carolina" or "LLMD and North Carolina" or something similar to get started. Or you could start a new thread asking for recommendations for a doctor in NC.