cdnmom

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.

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).

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?

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

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.

Does anyone know if Myco P, in it's Igm stage, can be detected in an x-ray?

Does anyone have any experience or info on these lyme treating docs....Anne Corson (integrative), Bernard Raxlen, or Maureen McShane....pls pm me. Thanks

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

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.

LaurenK - would you mind telling me what brand of Kefir you use?

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?

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?