KaraM

Hi, We will be holding our third or fourth PANDAS/PITAND/PANS support group meeting on Saturday, Nov. 5 from 1:30 - 3:00. If you are interested in joining us, PM or email me and I will send you the address. We are trying to line up a guest speaker to talk for 30 minuets or so. Potential speakers include a medical psychiatrist or an acupuncturist. Best wishes, Kara

Thanks, everyone. I believe RF does cause heart issues.... Good news is that the doctor agreed to test this girl for both. I'm unsure what type/level of testing, but I mentioned to the mother that there are many different levels of testing for both and to consider the others if the first round comes back negative. Kara

Hi, The 17 year old daughter of someone I know is currently being hospitalized for anorexia and a heart issue (carditis??). Anyway, the anorexia came on suddenly in the March timeframe. She was put in an inpatient program, improved over the summer, but was just hospitalized again. I asked if they ever tested her for strep, but she didn't think so. My question to the group is whether PANDAS AN can occur in teenagers after puberty? Anyone have any experience or references that I can point this mother to? Thanks, Kara

Awesome news! Thanks for sharing. I'm curious about the eating comment. Can you tel me more about that (now thankfully past) behavior?? Thanks, Kara

Just found the article...here's the link for anyone who hasn't read it. http://library.constantcontact.com/download/get/file/1103470649803-6/Clinical+factors+associated+with+PANDAS+2011.pdf

Doug, you mentioned this in the "unexpected turn of events" post: "Also tell your Doc that PANDAS has just got into the journal of Pediatrics for info on it." Do you have a link for that article. Did I miss that somewhere along the line here? I just tried searching but was unsuccessful....could be me Thanks Kara

Just want to echo EVERYTHING everyone else is saying. Do NOT accept a negative PANDAS/PITAND/PANS diagnosis so quickly. Did your doctor read the Sudden Onset article that was mentioned above? I don't know how s/he could ignore the possibility after that. This was an article compiled by one of the most reputable profesionals in the OCD world. There is also a post from the director of the National Institute of Mental Health that your doctor should be made aware of... http://www.nimh.nih.gov/about/director/index-ocd.shtml I may be going out on a limb, but I think any doctor to brush and of the P's so quickly off in light of such sudden, uncharacteristic onset, is either ignorant, negligent or both. If I were in your shoes, I would really push my doctor for a trial of antibiotics (augmentin or zithromax). Really, what harm would it do? It's certainly not going to cause any public health issue (I.e. antibiotic resiIstant infection). If your doctor doesnt give it, find a new pediatrician a.s.a.p that will. Go for a second opinion somewhere. Also make an appointment with one of the PANDAS docs and get in a.s.a.p. as well. Also, and I don't think I saw anyone mention this, but start keeping a journal and/or chart of behaviors. If you rank your days (or, even different symptoms within days), you will be better able to see, and show a doctor, if there is any change (good or bad) after starting treatment. I can send you sample of the chart I kept for my daughter as well as one that someone else put together. PM or me with your email address if you want it. Kara

There are other labs that test for BArtonella as well. I believe Quest is one. Mayo could be another...They are covered by insurance.

My understanding is that the combination of Zithromax and Bactrim together is used for Bartonella and for Lyme. When we first got my dd's positive Bartonella results, our PANDAS doc, Dr. B., put her on both and referred us to Dr. J. Since it was going to take so long to see Dr. J, we saw an LLMD, Dr. H., closer to home. At that point in time we did not yet have her Lyme results back...just Bartonella. Dr. H. told us that the two medications together were good to treat both Lyme and Bartonella. Since then, we have also seen Dr. J. and he has kept her on the Zithromax and Bactrim combined to treat the Bartonella. Her Lyme results have appeared negative so far. She has been on these two meds together since the end of March. It's been a slow climb up, with lots of ups and downs, but she is now about 90%. So I think we're on the right path with that treatment.

Thanks LLM...I can always count on you! Kids are doing pretty well...esp. dd the last few days. I'm going to bump her up to 90% DS seems pretty good, too, but can still get moody... So, as for my symptoms, they morph (suggesting Lyme, I guess). Of course hormones can always be to blame. But the list includes at different times (some coming and going): Depression, anxiety, sleep issues (night waking, can't ever seem to get enough), hip pain, skin issues (out of the blue changes that stay for a few years, then change...so rosacea for a while, acne on my back, and, more recently excema...even in my eyes), itchy eyes, eye vision changes (I needed glasses at one point in my twenties for distance...but not when I was younger and no longer); I can remember having numb feet in the mornings (but no longer); arthritis in my hands (but no longer). In the past, I chalked a lot of this up to age, hormones, being a working mom, then being a mom to a sick child. But some of it began before motherhood. Right now, I definitely have the mood swings (sometimes very down, sometimes very irritable...almost a bubbling rage-like feeling that I know is way more of a response to a situation than what is called for), sometimes have anxiety, often have sleep issues, always have the excema and itchy eyes, sometimes have the hip pain. There are some days when I feel great, too. Especially when dd is doing well.... I can argue both sides of this... why it might make sense or other reasons that can explain it all...

Hi, I had my physical last week and asked my GP to order some Lyme tests. I didn't insist on IgeneX. I figured I'd start with what he recommended and what was covered by insurance. He's been very understanding and accomodating regarding my daughter and my requests for strep tests on my and my dh, but I could tell, when I showed him the page from Dr. J. about understanding Western Blots, that he was a little skeptical. Anyway, I had him test me on Ehrlichiosis, Bartonella and Lyme, since those are the infections my dd and ds have shown positive or equivocal results on. My Ehrlichiosis results look suspicious. My IGG was normal (<1:64, reference range <1:64). But my IgM looked high (1:80, reference range <1:20). The test says "due to a low/negative IgG and positive IgM, the presnece of a recent/current infection should be confirmed by running acute and convalescent sera in parallel and an increasing IgG value detected." So, I guess that means I should aske to be tested again? The thing that's wierd is symptom wise, this is the last thing I would look to (for either my dd who was positive or for me). As for Bartonella: both IgG and IgM were <1:128 (ref range <1:128). So those look normal. The test looks like it was performed or referred by Mayo Medical Labs. The Lyme IgG and IgM say negative. But then the IgG Bands p66 and p41 were noted. So I'm guessing that means something showed on those bands, but they aren't enough to meet CDC criteria. IgM showed just p41. Looking at Dr. Jones note on understanding Western Blots, p41 and p66 are not any of those Borellia specific bands. Should I be worried? Could these be indicative of something else? Thanks for sharing any thoughts you may have. Kara

I wasn't very good at tracking how many days between the herxes, but I definitely noticed a pattern over the first 4 - 6 weeks. It seems like we had 4 intense herxing periods and they were 1 - 2 weeks apart and each seemed to manifest in a huge increase of one symptom. So the first was an increase in OCD, then the intensification stopped and slowly began to improve. A week or two later, huge hyperactivity...running around house like crazy, couldn't lie still at night, etc...then that calmed. A week or two later, major rages, then calming. A week or two later, major depression. Since then, it has still been one step back (herx), one and a half foward. Each herx seemed to be followed by a small (but bigger) leap. But the herxes got less and less "intense." Now, if you can even call them herxes, they are just a little annoying (sometimes worryisome... l;ike we are heading back down that path to h###...but so far, those have been false alarms). We are now in the middle of our sixth month of Bartonella treatment with Zith and Bactrim (after a year of treatment for PANDAS with just Zith...that worked well for about 6 months, then stopped until we added the Bactrim in).

I am giong to echo LLM and S&S...my dd's Bartonella progress was slow, with initial herxes, followed by improvement, then smaller herxes. It's full of ups and downs, but the downs are usually followed by bigger improvements. One step back, one and half foward. In the end, I think you have to be patient...especially if you see a trend like this. In addition to the ERP suggestion, what about detoxing? Are you trying anything for that? If she is willing to shower now, would she be willing to do Epsom Salt baths? Kara

Have you tried giving benadryl. My understanding is that if it is the result of an allergy, then benadryl should help.

Through GoodSearch you can also GoodShop. Lot's of stores will donate a percent of your shopping bill to whatever cause you have chosen as well...1% or 2% of purchase. Stores like Lands End, Amazon, Target...many name and non-name shops. If you enter through GoodSearch's website, it will bring you to that store and the donation is automatically applied. So remember that if you are doing your shopping on line...especially as the holidays approach.

I answered "no" to the first question, but it would not let me cast a vote unless I also answered the second question. I just entered no for that too, even though I won't be driving home that night (since I won't be there...) I'm not sure if you can edit the wording or add a choice to the second question so that the people not attending have an option. I wish I could go. I think it's a great idea. Kara

Great news! Hoping and praying for this to be the beginning of the end! Kara

Not a credit card response, but I was wondering if you tried to get any money from the LymeAid for kids (r at least get some bills paid for by it)?

I'm not expert on this, but is it a possibility that it could be a herx reaction and that there could be some Lyme or other infection going on? I know that some people with Lyme or other tick born illnesses have broken out in rashes after starting abx. Does it go away with Benadryl? I'm pretty sure (but not positive) that if it does, it would indicated an allergic reaction. I'm not sure if Benadryl would make a Lyme or other infection induced rash go away. Does anyone else have insight on this. Kara

Short answer for me....yes.

Wishing the best for your son. I hope this is the beginning of the end.

I'm going to echo the recommendations to look for Lyme and co-infections. I didn't expect my dd would have any and really just pursues based on recommendations from people on this board and Dr. B suggesting before going the IVIG route. I was shocked when her Bartonella (and more recently Ehrlichiosis) came back positive (jury is still out on Lyme). I think you would want to rule these out before doing IVIG or steroids. We did not have ticcing...major OCD and other PANDAS behaviors though. On a different note, a mom in our local PANDAS/PITAND support group (FamilyOfFive on this forum I think) discovered that mold was the biggest culprit in causing tics for her entire family. Once they resolved that, symptoms improved significantly. Do you have mod lissues in your home?