EAMom

Thanks!

for those that have run the test recently. Thanks!

@Joybop Oh, I don't know. It's for my friend's mom. My friend said she has Kaiser. I asked if she also had Medicare, and my friend said yes. I don't really know much about Medicare but I'll ask my friend. It sounds like the mom is too sick to deal with all of this herself.

Hopeny, Since my friend's mom has Kaiser, I guess this means her Medicare is managed by Kaiser?? So maybe the Igenex tests won't be covered? "If you have Medicare there will be no charge for the IGeneX labs. (You must bring your Medicare card with you!) If your Medicare is managed by an HMO, however, your IGeneX lab tests will NOT be covered."

Found this online which explains about insurance for a certain Lyme doc: http://www.usmamed.com/usmaqa.html How much will the lab work cost? "If you have insurance, bring your insurance card with you and you may present this to LabCorp at the time of your blood draw. Most of your lab work will be billed directly to your insurance. If you do not have insurance and have to pay for your LabCorp labs out of your pocket, the cost of these will vary greatly, depending on what needs to be ordered. Make sure you ask the lab technician to tell you up front how much each test costs. If you have an HMO, only lab work ordered by an in-network provider will be covered. Some patients are able to convince their HMO primary care provider to order some of the labs for them so that they will not have to pay for these out-of-pocket. Even if you have insurance, the tests we will order from the specialty lab, IGeneX, will need to be paid for up-front by credit card. The total charge for this lab work will be approximately $800. If you have Medicare there will be no charge for the IGeneX labs. (You must bring your Medicare card with you!) If your Medicare is managed by an HMO, however, your IGeneX lab tests will NOT be covered. If you have a PPO, you will be able to submit the receipt from IGeneX for reimbursement under your out-of-network expenses."

Hi All, I have a friend whose mom needs a LLMD. The mom lives 1/2 North of San Diego. She has Kaiser and Medicare. Please PM me with names and comments on doctors if you know of any in San Diego (or even LA). I know Kaiser is bad news for Lyme! Does the Medicare help? Does anyone know if Medicare would help cover any of the "good" Lyme tests (eg Igenex and/or Advanced Labs Culture test). Thanks! Eamom

Hi, I haven't read all the comments... but re Hrosenkrantz's kid: "I'm interested in the responses to this. Our son is a week and a half post IVIG and he is behaving so naughty -- doing things like grabbing a container of milk and dumping it on the floor and laughing, behaviour that is not acceptable," I just need to say with recent IVIG, your kid's brain is being bombarded by those IVIG antibodies right now. He is going through "turning back the pages". He will get old symptoms and new symptoms. This really isn't something within his control! Remain calm, this will pass. IMHO he cannot be held accountable for his behaviors right now. I think it's fine to let him know his behavior is unacceptable, but I wouldn't take away privileges or punish or hold it against him in anyway. Just do whatever you can do to keep him calm and let him relax, keep stress down, during the next couple of weeks.

How long has it been since his last plasmapheresis?

http://www.moleculera.com/

The NIMH study is almost wrapping up so call Paul Grant ASAP!! http://clinicaltrials.gov/ct2/show/NCT01281969

Every kid is different. My dd would be VERY upset if I didn't give her advanced notice (tell her at least the day before).

norcalmom--I tried to send a msg, but it says you can't get new messages. Maybe your in box is full.

Nicklemama. I did hear (on another group from a parent) that Dr. N has consulted with Dr. T on a case (s). So maybe she is getting more up to date? I sure would be interested in how she is diagnosing/treating PANDAS now. I know a few years back when lots of us were doing the Cunningham test (through the study), she wasn't doing it/familiar with it, and was disappointing on many other levels. It would be great if she was now more up to date, not just recognizing the obvious strep acute onset PANDAS cases.

Hi! I haven't read all the responses...but this is what gets me about these chronic Lyme naysayers that say infection doesn't persist after 30 days of antibiotics. You are the 3rd person I know of that has (or had a child) on antibiotics for 2-3 YEARS, yet off antibiotics for a couple of months, the culture comes up positive again. (There is actually a 4th person who I know personally, had just 30 days of antibiotics...Lyme culture positive). Why isn't there a study to demonstrate this, and put an end to the ridiculous argument that Lyme is cured after 30 days??? ^okay vent done. I don't personally have Lyme (neither do my kids)...but this is me. If the culture was positive, I would continue to treat. I like the idea of at least doing herbals, if nothing else. My issue with Lyme is, just because we don't think there are symptoms now (and it sounds like you think there may be) that doesn't mean she's not going to become full blown again if she gets a co-infection (not thinking just tick stuff, also strep, viral, puberty, anything). And KaraM, are you also dealing with PANDAS....has strep ever been an issue? Is your dd on something to prevent that? We plan on keeping my dd on abs (for PANDAS/strep, not Lyme) until at least age 18. She's not symptom free, but pretty good, 90%. We just can't risk another strep infection (Azith also offers some protection against mycoplasma, which is nice) since her big PANDAS episode at age 7 was life threatening (anorexia) and we are still not symptom free (even after 3 HD IVIG's), although her baseline has been pretty stable for the past year.

We've actually found a rheumatologists (or immunologists) to be more helpful. we did see a neurologist early on, but she didn't know much about PANDAS. She did order an MRI for us (which was normal). She agreed we had PANDAS, and couldn't argue that long term abs made sense (given the severity of dd's case, anorexia, and a sibling who is an asymptomatic strep carrier). Some neurologists are HUGE pandas naysayers. However, some of the top PANDAS docs in the country are neurologists (Dr. T, Dr. Latimer), so it depends on the doctor.

Yeah...some of the docs on Beth's list are questionable. Remember, Beth is the one who is convinced "ASO is a test for PANDAS" and Augmentin is the best (only?) way to treat.

PS be careful of steroids if Lyme is a possibility. Also, avoid steroids if you might do the Cunningham Test as steroids will alter the results (antibiotics are okay).

The "Cunningham Test" (aka "the test for PANDAS") is now commericially available in most states. Here is a link to the company's website: http://www.moleculera.com/ Here is a link to one of the first (and longest!) discussions on this test: http://www.latitudes...?showtopic=4834 The test is also discussed under FAQ's: http://www.latitudes...?showtopic=6266 , scroll down to "Tests: Antineuronal Antibodies Tests" Post #1 in this thread ("Back from Oklahoma and Visiting Dr. Cunningham") also some good questions and answers http://www.latitudes...pic=9361&page=1 The test is very useful if you aren't sure if you are dealing with garden variety tics or PANDAS.

Just be aware that some members in the past have had problems with Dr. Nicolaides. Maybe she has changed over the years and is more up to date now?? She is purposefully not on the "recommended" docs list on this site (or PANDASnetwork.org). http://www.latitudes.org/forums/index.php?showtopic=5023 http://pandasnetwork.org/resources/providers/ Even with the docs on the lists...sometimes it is good to post and get more personalized feedback on their approach. Some are "good" with diagnosis, but very conservative with antibiotics (or have a limited workup, not checking for immune def or other infecitons). Every doc has pros/cons.

In one of the radiopandas episodes, they did say that the test could be used to monitor response to therapy. http://www.blogtalkradio.com/radiopandas The Cunningham test does get around the naysayer's that claim strep is so common (you know, Kurlan's pizza analogy) that any correlation with strep and behavior change is just coincidental. Have people that had been running the test had success with insurance paying for some (or all) of it? We did do the test a few times (when it was $400 and you could also write it off as a charitable deduction to Univ. of Oklahoma). Her highest CaMkinase ll was after getting H1N1, it was 253% (high SC range). Prior to that, when not in an exacerbation (but before steroids or IVIG) she was in the high PANDAS range (183%). Her values did convince our immunologist (at the time) to okay IVIG locally. Otherwise we would have had to travel to Chicago (from CA) for IVIG with Dr. K (this was in 2009). Her anti-D1 was consistently VERY high, up to 16,000 when normal was 500-2000 (high even after IVIG, when her camkinase ll went down). Her anti-D2 was on the high side of normal. Her anti-lysoganglioside and anti-tubulin were also high (sometimes high end of normal, mostly just high). I think Dr. Cunningham said that anti-D1 was OCD related. I can't wait to re-run the test. It's been 2 years since her last IVIG. and 3 years since we last ran the test. Dd is overall better, but still has residual OCD. She doesn't want to "fight" the OCD (it's mainly doorway issue), so ERP/CBT isn't going to cut it for us anyway. If there are still a bunch evidence of anti-neuronal antibodies, that would to me suggest that we still need some sort of immunotherapy/medical treatment vs. "she just isn't trying, and needs therapy".

Did your son ever have his throat cultured (prior to starting antibiotics for example)? Low strep titers don't rule out strep (current or past) as a trigger. Many PANDAS kids don't get elevated titers, even with positive cultures! Cultures aren't always positive however (if the swab isn't good enough, if the strep is in the sinuses instead of the throat, etc). I would also rec. throat culturing family members to make sure there isn't an asymptomatic strep carrier in the household. BTW, stuttering is a PANDAS symptom: https://www.aacp.com/Abstract.asp?AID=9159 http://www.latitudes.org/forums/index.php?showtopic=19972

LindaMW, so are you able to get abs for the Mycoplasma through your PANDAS doc? I hope so! BTW, I'm hearing lots of scary things about the HPV vaccine, even for non-pandas kids! I also wonder how many kids who have had bad reactions to the vaccine, actually have underlying Lyme which came out of its dormant stage with the vaccine?? http://www.kmbc.com/news/kansas-city/teen-suffers-health-problems-after-receiving-hpv-vaccine/-/11664182/20228464/-/item/0/-/xmf6lo/-/index.html You might ask this "therapy only" doctor where are the studies that show that therapy (or therapy w/out antibiotics) is effective in PANDAS kids. (There aren't any studies that I am aware of!)

We took the personal beliefs exemption (CA) to get out of the Tdap they wanted all 7th graders to have. I'd recommend getting Tetanus titers drawn to see if you even need to worry about getting a tetanus vaccine. Our pedi actually refused to draw titers and wanted us to get the vaccine. Our rheumy thought drawing titers was a great idea (and they were well in the protective range) and agreed that it was unlikely that our dd would get pertussis or diphtheria since she is on long term Azith. I don't know if our rheumy is anti-vaccine for PANDAS kids, but seemed to agree it made sense to not "rock the boat" right now as our dd is doing pretty well.

PM me if you know of anyone! Thanks!

Hi Tattoomom, she started at that dose in 2008, just over 5 years ago.. She'll be 13 in July. Actually a couple of months ago I switched her to 500mg Azith. every M, W, F. (We could go up to 500mg every day if there is a flare.) The every other day makes it easier for me to give probiotics etc. on the off days.