lfran

Thanks, all. So, it sounds like a cyst buster can be started later? Or should I start requesting it be added ASAP?

Hi all. Quick Igenex recap for DS9. IGM: 31 and 41 were IND, 58 + IGG: 41 ++, 58 + As the first step on our journey, I located an MD in our HMO who was recommended for Lyme. He hasn't seen tons, but he has seen more than anyone else. Based on constellation of symptoms, Igenex results, and our vacationing habits, he diagnosed Lyme and started DS9 on azith 250 mg for 21 days (DS9 is 83 pounds) and then said to check back in. He also ordered TCell panel and CD3+, CD4+ etc. (DS9 is actually remarkably healthy in terms of not getting common illnesses). I know this is not long-term enough treatment -- but it's a start and I plan on moving forward. I asked him about adding Flagyl and he is going to get back to me. Can anyone comment on the dosage and drug choice? And on any literature I can give him re: Flagyl (or anything else!) Since he is about to start the antibiotics, I am also interested in doing the provocation test with Igenex, for my own peace of mind. Also, can anyone weigh in on that (for instance, if I get a negative, I might drive myself crazy)! I do know of a couple of LLMDs outside our HMO that are in our area and I am also looking into that.

Someone just posted yesterday that the circulating immune complex is C3D, not the CD3 that everyone has been typing. Are they two different tests? I ask, because just saw our doctor yesterday and he ordered "T Cell Panel CD3+, CD4+, CD8+, CD4/CD8". Is that the circulating immune complex? Or not???? Thanks!

Hi all. As I posted before, my DS9's Igenex results were inconclusive, so Igenex recommended retesting which I am about to do. Any thoughts on repeating Basic Lyme or ordering Complete Lyme (includes PCR)? Also, any thoughts on CD 57? His IGM: 31 and 41 were IND, 58 + His IGG: 41 ++, 58 + Also, can anyone recommend a good LLMD in Southern California? Thanks!

Thanks. I contacted them about follow-up 31 kd testing, but they had discarded the blood already as it had been over 3 months. I plan on retesting, just not sure which of the tests to do. I expect to have a game plan in the next few days. Anyone else out there in Southern California? Any local resources or LLMDs to recommend?

Ok, I did some more searching, and I think that this is where the 58 kDa specificity for Lyme probably came from -- see Fig. 1. But, it is from 2003 and came from a google search -- I don't see it on Igenex's website right now. Any thoughts? http://www.igenex.com/innovations3.pdf Thanks!

Thank you to those of you who responded to my post yesterday. I have done some searching and calling and found a medical group in Torrance, CA that seems to have LLMDs on staff. Their website lists many bands that they say are specific to Lyme, including 31 and 58 (58 is of interest to me, as my DS had it in both IGG and IGM). But....I can't find anywhere else that says that 58 kd is diagnostic for Lyme. Can anyone help me out? Also, has anyone been to these docs? Thanks in advance.

Thank you so much. Is there a good resource for the provocation testing that I can take to our regular ped? I'm with an HMO, so all LLMD visits will be non-insured, but our pediatrician is pretty open to working with us to get evidence, etc. That's why I was thinking the testing first, and then going to an LLMD if the tests were more conclusive. No rash, no confirmed tick bite (but his dad and I have both been bitten by tics during vacation activities, so it is likely he was bitten but we didn't find it. His main symptoms are tics -- no pun intended). But I will put the calls out to schedule an LLMD appt -- I know how long these things can take and I'd like to be on their lists. Thanks again.

Hi all. I was active on the PANDAS board for a while, and then decided to try Lyme testing. Got the results pretty recently and my DS9 has IGM of 58+; 31 IND; 41 IND. His IGG is 41++ and 58+. Igenex says this is negative but they nevertheless recommends retesting in 4-6 weeks or with another method. But, they won't tell me what the other method might be. It has actually been more than 6 weeks since the blood was drawn, so I could redo the same test if need be. So....any thoughts? Do these numbers seem suspicious? We just did the Initial Lyme Panel, without the PCR, since he was on abx at the time. He is not on abx right now, so I could re-order the initial panel, or the complete one, or....? Thanks for any advice.

We saw flare ups with tooth loss -- I think the initial episode was triggered by a tooth extraction. I make sure my kids have antibiotics before any dental procedure now.

Thanks for sharing! DS9 is also mainly tics (OCD issues so subtle that I wouldn't notice if I weren't on high alert) and his anti-neuronals were all high normal, except for D2 which was 32,000! What is the name/where do you get the neurotransmitter test that you mention? Thanks!

Hi all. DS6 non Pandas is a strep carrier (as are DH and myself). He has chronic sniffles and dark under-eye circles, but whenever he blows his nose, it is always clear, not infected (not green or yellow). Elevated ASO and DNASE, but negative swabs, which were done a couple of times. Usually one side is stuffed way more than another. No nasal swabs, though. Just throat and perianal. No OTC meds seem to help -- I've tried just about every antihistamine and decongestant there is. Saline and other washes help very temporarily. This has been going on a long time, but has recently gotten a lot worse. I have been hearing so much about sinusitis and strep here. Does this sound like sinusitis? I was figuring allergies, but I'm willing to try a different path. We have been to soooo many MDS for DS9 (PANDAS) that I hate to start the rounds of med treatment for another child, but it looks like I may have to. So far, what everyone has offered is flonase, but the warnings on the insert sound pretty scary (may interfere with growth and also may make more susceptible to measles and chicken pox, which is just what we don't need in a PANDAS house). Thanks.

I've been wondering about the language component too. DS9 was a bit late of a talker, but a very early reader and writer. By age 8 and 9, he started writing really, really well. Complex thoughts, ideas,and vocabulary. An extremely engaging style. He started writing a book and a play on his own, and people have responded really well to them (and they weren't just being polite!). However, when speaking, he often gets stuck in the process of getting words out, with a little hiccup-thing before phrases, and then he repeats the phrase. For years, I thought he was being thoughtful (as do my adult friends who hear him). Then, when he started writing so well, I realized there was a larger discrepancy between his spoken and written language. This may be part of a tic, or it may be something more. I have a referral for speech therapy, but honestly don't know if I want to go that route. He is 90-95% better and we are all so tired of going to doctor after doctor and getting treatment and therapies. I've been warned by others that he may start to think that there is something really wrong with him because of all this. And he is so close, and does well in school, etc that I'm really not sure I want to rock the boat. Thoughts?

The teeth staining will go away with a dental cleaning! At least, it should. That's what the literature said, and that was also our experience. When we noticed the teeth staining, I really freaked out. But DS9 was due for a dental appt anyway, and presto...it was gone. Good luck.

AWESOME!!!

Isn't scarlet fever caused by strep???? Well, we went last week for the EEG, Bummy was a trooper, he did great! Everything came back normal. I was at the pediatrician with my daughter today (she had a jfollow up for the ENT and they mentioned her throat looked red. Turns out she has scarlet fever - but that's a whole 'nother post!) while there, I gave him an update on my son. He said that he got a full report from the neurologist yesterday with the EEG results and his diagnosis, and to his surprise (and mine) he agreed with and confirmed the PANDAS diagnosis! Success, one doctor at a time...we'll make believers of themall!!!!

This is amazing. Can you clarify re: the Cunningham tests, if above normal refers to the range or the mean? Also, wasn't sure how to deal with the symptom list. DS9 has primarily motor and vocal tics. He has some of the other, but they are so mild that if I didn't know to look for them (thanks to this group) I would either never see them or pass them off as minor quirks of childhood or personality. I guess I'll put them in as co-occurring. And, as for the trigger - I think that his was a tooth extraction that occurred w/o prophylactic abx. Can you add/expand the trigger question?

Which probiotic are you using? I went to our health food store and they recommended this one for people on high-dose antibiotics http://www.renewlife.com/ultimate-flora-critical-care-50-billion.html?utm_source=google&utm_medium=cpc&utm_term=ultimate%20flora&utm_campaign=NEW%20-%20Probiotics%20-%20Specific&KEYWORD=ultimate%20flora&MATCHTYPE=Search&AD_ID_G=5128725389&gclid=CInEurmhlqMCFQ4EiQodrQ3FsQ It's not cheap (about $1 a capsule), but it worked really well for us. I had three of us on abx and we had no stomach or yeast problems at all, and that's unusual for us. Also, when I switched to this from a different probiotic, DS9's bloating went away.

Thanks for the info. How long does it take to get the Western blot results back from Igenex? Also, will they send them to the family, or just to the doctor? Thanks!

My son was also at <0.3 for 9 of the 14 serotypes (and at 0.4, 1.2, 3.2, 6.0 and 27.3 for the others). This seems to be a trend. But...if the prevnar didn't contain all of these "strains", wouldn't we expect the kids to be low for the ones that weren't included in the vaccine? The notes that came with the test suggested that kids older than 5 should respond to at least 70% of the serotypes (which would be 9.8 out of 14).

That's wonderful news. Congrats. We are also in Southern Cailfornia, in Pasadena. Would you mind sharing what the urine tests were that he ordered? And congrats again. Thanks so much.

Huh...my DS9 can never decide what to buy in stores either...but fortunately he's usually okay with not getting anything, since he can't make a decision. I didn't realize this might be a more common problem.

I re-read your post, and I read your post wrong. Sorry. In case anyone wants it, here is the link to the Igenex tests as a PDF. It's part of what they send you in te mail. http://igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf

We just did the Igenex test Monday. I chose the basic one because the difference between the basic and the 4050 is the PCR analysis, which you can't do on antibiotics anyway (have to be off abx for 10 days, they said when I called but which they DON'T say on their literature). So, since DS9 is on abx and isn't coming off them anytime soon, I saved the money and did the one without the PCR -- which is the one available for NY anyway, if I'm understanding it correctly. And thank you to whoever posted recently about the abx and lyme testing. Otherwise, I would never have known to ask.

My younger son (now 6) had all but one of his DTAPs and I didn't want to give the last one. I asked for titres to check his immunity and he was fine. So you may be fine, also. Good luck.