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Everything posted by lfran

  1. Can anyone tell me how long it takes to get urine dot blot results back from Igenex? Thanks.
  2. Hi all. DS9 is currently on 500 mg azith. I had thought to take advantage of this to run the Dot Blot provocation test. Any thoughts on this? Is azith alone considered enpugh of a provocation? Also, the test protocols say to take on specific days after starting the provocation agent -- ie, days 2, 4 and 5 (just an example; I don't remember the exact days but they were low numbers). However, he has been on the abx for 2 weeks now and will be on for at least a week more -- so I have already missed days 2, 4 and 5. I am assuming that that doesn't matter, and that as long as he has
  3. Does anyone have any info on this? The test results just came back and they are all within the normal range, except for the one that says CD3/100 cells which was just the tiniest bit high. Is this the test that you guys have been talking about? Thanks.
  4. Thanks, all. So, it sounds like a cyst buster can be started later? Or should I start requesting it be added ASAP?
  5. 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
  6. 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!
  7. 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!
  8. 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?
  9. 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!
  10. 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.
  11. 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 s
  12. 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 h
  13. 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.
  14. 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!
  15. 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 go
  16. 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
  17. 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.
  18. 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, on
  19. 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 questio
  20. 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 unusua
  21. 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!
  22. 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).
  23. 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.
  24. 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.
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