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Everything posted by cdnmom

  1. landamom - my ds is NOT completely recovered. Like your dd, he has motor and vocal tics - the vocal tics are gone and the motor tics are 80% better but I still see him ticcing everyday. He is still touching his ear to shoulder and doing arm pumps every day and occasionally I will see an eye roll. We also have an appt scheduled to see Dr. B. and Deb McCabe, not until December though and I'm not sure I will keep both appts - there just isn't enough money to go around. I think I will ask for another month of treatment dose or ask for Augmentin. Ds's total IGG is 523 (norm is 673-1734) and IGG 1 subclass is 345 (norm 432-1020). The other subclasses are also low but within the reference range. Dr. T. said we have to keep an eye on these numbers and if they drop, he will probably need ivig. I don't know what subclass 1 means specifically, will need to ask tomorrow.
  2. Hello all, ds8 has been doing well on treatement dose zith for Myco P but is nearing the end of the 1 month dose given by Dr. T. I have a follow up consult on Mon and he mentioned putting him on a prophylactic dose going forward but I get the feeling he is conservative in his treatments....mentioned something like zith twice a week (maybe this is the norm). I understand every child is different but I just wanted to get a general feel for what other children are taking as a prophylactic dose. Ds is also immune deficient (just under the low end of the norm).
  3. Hugs2day - How did you get the Quadros test done....did you order it online? Is it a blood test? Would you mind telling me how much it cost?
  4. Hello all, Does anyone have any good GFCF bread recipes, chicken finger recipes or any other kid friendly recipes. I have tried most of the grocery store "pre-made" breads and they are all horrible. My children are pretty fussy eaters to begin with and I am finding the GFCF diet rather difficult to stay on. If anyone has any useful children cookbook ideas, I would love to hear about them. Thanks
  5. All 3 of my children and I tested positive for Myco P. Igm, but all of our Igg numbers were also high. My husband tested positive for Igg only. With the exception of my husband, the rest of us have been sick, off and on, every month since March. It was really strange to me because everyone's symptoms would always creep back and were the same as they were the previous time so they seemed to have the same infection each time. No one had fevers, but my dd5 would always get a bit of a sore throat, a cough, and a clear runny nose (same symtoms each time). My ds5 would keep getting croupe and pedi diagnosed him with asthma and my ds8 PANS would get congestion that would take forever to go away and he had this weird morning cough that lasted forever. We found the Myco P. with Dr. T while doing routine bloodwork for my PANS son..it was quite a shock....family doc and pedi missed it. Dr T. thinks the Myco was ds8's trigger and put him on 30 days of zith, but only gave the rest of us 10 days. My husband got nothing. My non pans children finished abx about 5 days ago and symptoms are starting again. I'm not sure if it's just germ exposure at school or the myco symptoms creeping back up. I am worried that we didn't get enough abx to treat and the window of opportunity is closing. My thinking was that if my family MD saw the myco in an x-ray, she might be willing to give me more abx, but it still probably wouldn't be enough to erradicate the infection. No one has any unclear lung sounds going on right now but they have typical cold symptoms. What does it mean when both Igm and Igg numbers are high? And what is the treatment protocol for myco when it's in Igm phase? Does anyone know? I'm tempted to call Dr. T. to request more abx....he is pretty conservative though. I don't really know who else to go to, I just got appt with LLMD but couldn't get in until Jan.
  6. Does anyone know if Myco P, in it's Igm stage, can be detected in an x-ray?
  7. Does anyone have any experience or info on these lyme treating docs....Anne Corson (integrative), Bernard Raxlen, or Maureen McShane....pls pm me. Thanks
  8. I am looking for an LLMD in the NY or Michigan area, preferrably someone who also understands Pandas. DS8 tested positive to Igm for Myco P. and positive on 3 lyme bands (23, 41, 58). The entire family tested positive for Myco P. but I believe I also have Lyme. I have been to numerous doctors over the past decade for various symptoms - chronic fatigue, chronic diarrhea, chronic headaches, hair falling out, brain fog...for which I have been tested for many things but have never been given a diagnosis other than IBS. I also had intracranial hypertension when this all started (just after my son's birth). All of these symptoms started at the same time which leads me to believe that the lyme was likely dormant and surfaced 4 months after the birth of my son (I had a c-section) and very stressful delivery. I'm Canadian, and therefore have no insurance. A few of you on the Pandas forum suggested the Bock Brothers which I have looked into, they seem to be exactly the type of doctor I would like to treat and help my son but they are very expensive and I'm not sure I need them for myself. Just wanted to weigh out my options a bit more so thought I would ask on the Lyme forum for any further suggestions. I can check out some websites to locate LLMD's, but would like some personal experiences as that is important to me. I appreciate everyone's help. Diane
  9. I am still new to Lyme Disease but I attended a lecture last night by a renound Canadian Lyme doctor who spoke about using IV antibiotics if a patient is in the chronic stages of Lyme, which by his guidelines meant having Lyme for 7 years plus. This is probably not his only criteria, as I think Lyme doctors would also look at current symptoms. Are you sure she was only missed by 2.5 years, symptoms can remain at bay, even though the infection is present. I would speak to your LLMD about it if you don't see much improvement on the antibiotics, although I have heard from several people that it sometimes takes 5 - 6 months to see much improvement.
  10. LaurenK - would you mind telling me what brand of Kefir you use?
  11. No strep strain in either of the probiotics. Both of the ones I've tried have Lactobacillus acidophilus and Bifobacterium lactis. I really have no idea why he is reacting. I started at a low dose and he still reacted to them. Has anyone tried Kefir?
  12. Ds8 started ABX for a current Myco.P. infection approx 2 weeks ago along with probiotics. A few days after starting, his tics became worse. Initially I thought it was a bit of a herx but my gut was telling me it was the probiotics. I took him off the probiotics 2 days ago to test this theory and his tics have been much better. We were using the Genestra brand and I switched him to the Metagenics brand but they both seem to be causing a problem. I know he needs the probiotics but am unclear about how to proceeed. Has anyone encountered this problem? What did you do?
  13. I've been reading a bit on the benefits of camel's milk and came across this: "Autism research is a rapidly growing field. While many parents report great results with camel milk, recently new information has come to light about cerebral folate deficiency (CFD), a condition of below normal levels of folate in the central nervous system. Folate receptor protein alpha (FRA) transports folate in the central nervous system. Dr. Quadros who tested camel’s milk stated, “folate receptor alpha antigen is very similar to cow’s milk and the immunoreactivity with the folate receptor alpha is also similar.” In light of this new information, it appears for children who produce autoantibodies to the folate receptor alpha, camel milk would be contraindicated and should be avoided. Dr. Dan Rossignol has found these antibodies in 62% of children with ASD that he’s tested. Because it is so prevalent, Dr. Rossignol recommends all children with ASD be tested for FRA autoantibodies. You can learn more about testing from your doctor, Dr. Quadros, and Quadros Lab." I'm not sure what this all means, I too am excited to try camel's milk but will have to look into what this means. Have a DAN appt today, I will inquire to see if he has had any experience with Camel's Milk.
  14. I give him the zithromax with food each time. I don't think he has any bug going on....he's totally fine otherwise. No fever, eating normally, very active. The probiotic I've been using is HMF by Genestra but I haven't been giving him too much as his ticcing symptoms seemed to flare when I first started them. I've just increased the dose yesterday. I haven't given any probiotic to him today because I wanted to see if things settle down first. He seems to be very sensitive to many products. I also started him on milk thistle for liver support 2 days ago....but other than that, everything else is same. I did notice an increase in tics while he was watching TV today but only for 5 minutes....he's fine if he's not watching tv. The vomitting is what is throwing me off....I haven't given him anymore zithromax since he threw up and he has been fine, but then again, I haven't given him anything except food since he's thrown up. Diane
  15. Ds8 is currently taking 500mg (250mg twice/day) of zith for current Myco P. infection. Yesterday he had 1 episode of diarrhea so I was not too concerned. Sent him to school today with a change of clothes (just in case), but the school called 2 hrs after giving him his morning zith pill asking me to pick him up since he had thrown up at school. He's been on this dose for 6 days now. He weighs 65lbs. I am also on same dose of zith (I tested pos for Myco. P. also) and I generally feel a bit naueous throughout the day too. Not sure if I should decrease the dose for a couple of days or try to get Dr. T. to try something else????? Ds was on zith in the summer but only 200mg per day and he did well on the lower dose. I also started him on probiotics about 3 days ago...but this morning he threw up after the zith, and last night he had the diarrhea episode few hours after the probiotic. Any thoughts?
  16. Thank you all for your reponses....my gut was just telling me that I could not let those positive lyme results go without question. We had the Western Blot done through Quest and it says "IGG WESTERN BLOTS WHICH HAVE 5 (OR MORE) OF THE 10 SIGNIFICANT BANDS ARE CONSIDERED POSITIVE FOR SPECIFIC ANTIBODY TO B. BURGDORFERI." Since ds tested positive to only 3 bands, he does not fit the "criteria" and my feeling is that this is what Dr. T. was looking at, coupled with the fact that band 41 is non-specific and he also thought band 58 was non specific. It's just surprising to me that so many of these Pandas kids have Lyme issues and so many have gotten relief from Lyme treatment and yet doctors are still reluctant to pursue.....hhmmmm. I will definitely keep seeing Dr. T., he is an extremely valuable part of my son's healing. BUT.....I will also pursue Lyme, thanks to everyone's help here. I am almost positive my results will also turn out positive....Lyme can be transmitted through the fetus and so I will also need to test my 5 yr old twins. I will look into the Boch brothers.....hope they are not too far from us. Diane
  17. Hi all, had phone consult with Dr. T. (NJ) to go over ds8 bloodwork results. My 3 children plus myself tested positive for Myco P. which Dr. T. is treating with abx. Ds also got a PANS diagnosis (after 6 months of trying to figure out what was going on). What is throwing me off though is that ds tested positive on 3 Lyme bands on the Western Blot(P23, P41, and P58). Dr. T. is not concerned about this but I am worried. I have a suspicion that I have Lyme, because I have been feeling horrible for over 2 decades now (extreme fatigue, chronic diarrhea for 8 yrs, chronic headaches, hair falling out) for which I've had numerous tests done, but no answers. I have never been tested for Lyme. I understand that band 23 is Lyme specific but I'm not sure why you need to test positive on 5 bands in order to get a Lyme diagnosis. If he's tested positive for 1 band that is Lyme specific, does that not mean he is in infected? I don't feel comfortable just letting this slide so I am looking for anyone who has a good LLMD for children who also understands PANS in the Buffalo area (we're from Canada). Or anyone who may do phone consultations would also work. Thanks
  18. For anyone else who may run into this problem.....Dr. T. just wrote a note on the bloodwork rx to please draw over the limit if needed, and the lab was good to go.
  19. For anyone else who may run into this problem.....Dr. T. just wrote a note on the bloodwork rx to please draw over the limit if needed, and the lab was good to go.
  20. From what I've been reading on this forum, many people use Igenex for Lyme and co-infection testing. I get the impression Igenex has a better "reputation"? If I've been getting my info correct, Igenex is also more costly??? I could be totally off with this, but my concern is that I'm paying a whole lot to have these tests performed through Quest and can't help but feel that maybe the money would be better spent to do it "right" the first time and put the money towards more useful testing. I don't want to discredit Quest's work, maybe I am completely off and they're testing is just as useful and informative as Igenex. Since many of you have been down this road, you will have more experience. Any info would be appreciated.
  21. So I had a consult with Dr. T. a few weeks ago who sent blood rec for entire family. I am from Canada and have been going crazy trying to get some of this bloodwork done locally. I've had a bit of luck for the more general testing, ie. ferritin, ige levels etc but when it comes to Lyme, Bartonella, etc....I am having no such luck. They do test here in Canada but you need to test positive on intial screening (which I don't believe is extensive by any means) in order to move through the tiers of additional testing, which require additional paperwork and approval....urgh!!! Sometimes I wish we had privatized health care. Anyhow, got an appt with Quest for Thursday to test what I can't test here in Canada but was told today (by Quest rep) that there is a U.S. law that allows them to draw only 30ml for children under 100 lbs. Ds8 is only 67 lbs and there are 16 tests to be drawn for. I don't believe 30ml will be nearly enough for all the tests. How do you all get around this hurdle? Do you need to draw more than once??? Ds already has to draw here for some tests and then in Buffalo for the remainder and he is freaking out!!! I am also a bit overwhelmed with all these tests - the Myco, Lyme, Babesia, Bartonella and Erlichia are costing over 1,400.00 (Total for entire family is approx 3,700) and that's with saving about 1,200.00 thru Canadian testing. And with hearing quite often that these tests listed above usually come back negative; that it's not often you get a positive result, it's even more frustrating. If these come back negative, do these docs usually test further via Igenex?
  22. We've used a few homeopathic remedies.....Gripps to relieve symptoms of colds and flus, Lymphdiaral to relieve symtoms of swelling, inflammation and infection (both made by Pascoe) and we have also used Sinus-Tox by Physica for severe nasal congestion....BUT everyone is defferent and these were recommended by our DAN doctor specifically for our ds8, so please find out what is right for you....we had to drop the doses as his tics became more aggravated when we started them.
  23. For those of you whose children can't tolerate vitamin B's, what multi vitamin, if any, do you give them?
  24. Ds8 has had tics since Feb (started with being sick)....even though the tics are milder than the initial onset, they are definitely still around. He has had a tooth that looks like it is moving in an outward direction (it's almost pointing forward). It's been like this for at least 3 months, possibly even 4 or 5 months, and is only slightly loose. Each month it looks as though it has moved further outward. Initiallly I thought the adult tooth was pushing the baby tooth out and it would eventually fall, but that isn't happening. Could this be causing some of his ticcing and is it smart to have it pulled? I'm not even sure my dentist would pull it out but if this is the culprit of his suffering, I would rather end it quickly. If a loose tooth can cause Pandas symptoms, can pulling a tooth create even more adverse Pandas symptoms?
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