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colleenrn

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Everything posted by colleenrn

  1. Thanks for all the replies. My son tested negative for both babesia. His IgG was positive for RMSF although he did not have the typical symptoms you usually see with rocky mtn. spotted fever. Now because his blood work for IgM quantitative was low, I am wondering if all the negatives for the co-infections were negative b/c he does not make IgM. How would we know? The only virus he tested positive for was parvovirus B19. Now I wonder if he could be positive for other viruses and/or coinfections and just not showing up that way b/c of his immune system. I have a phone consult with our LLMD in 20 minutes. Not sure if she will want to add an anti-viral. he is currently on azithromycin 250mg per day and added in Alinia 200mg twice per day. Colleen
  2. How long would the IgG stay elevated (his is 4.6)? Because his IgM is negative, couldn't it just be that he was exposed to Parvovirus B19? I am not understanding if this is really significant or if his IgG is elevated from exposure. It was going around his school in May and June. The more I read about the complications possible with immunocompromised people and Parvovirus, the more I worry.
  3. My LLMD ran labs on my 5 year old son. His WBC count continues to be low and has been since Feb. His WBC is 3.2 (was 3.5 two months ago). His neutrophils are also low at 0.9. He was diagnosed with PANDAS at age 2-3 with strep issues. Was diagnosed with Lyme in Feb. So far co-infections have tested normal except RMSF was IgG positive. BUN/creatinine ratio is HIGH at 31 IgG seems OK at 956 (normal is 504-1464). Not sure how to interpret the subclasses- they are normal but some are in the lower range. IgG1 572 normal (292-816) IgG2 285 normal (83-513) IgG3 52 normal (8-111) IgG4 19 normal (1-121) IgM is low at 18 normal (24-210) His IgG was positive for parvovirus B19. It is 4.6 Negative is <0.91 and positive is >1.1. This is Fifth's disease and it was going around his school this spring, but he did not have it. His tests for EBV and chlamydia pneumo, and HHV-6 were negative. ANY help with interpreting these labs is so appreciated! Colleen
  4. My LLMD ran labs on my 5 year old son. His WBC count continues to be low and has been since Feb. His WBC is 3.2 (was 3.5 two months ago). His neutrophils are also low at 0.9. He was diagnosed with PANDAS at age 2-3 with strep issues. Was diagnosed with Lyme in Feb. So far co-infections have tested normal except RMSF was IgG positive. BUN/creatinine ratio is HIGH at 31 IgG seems OK at 956 (normal is 504-1464). Not sure how to interpret the subclasses- they are normal but some are in the lower range. IgG1 572 normal (292-816) IgG2 285 normal (83-513) IgG3 52 normal (8-111) IgG4 19 normal (1-121) IgM is low at 18 normal (24-210) His IgG was positive for parvovirus B19. It is 4.6 Negative is <0.91 and positive is >1.1. This is Fifth's disease and it was going around his school this spring, but he did not have it. ANY help with interpreting these labs is so appreciated! Colleen
  5. Our LLMD ran all the tests for co-infections. The bloodwork was done after my son had been on weeks of doxycycline. His co-infections were all negative except his IgG was positive for RMSF. He nevr had the typical rashes you get with RMSF, but he did have over a month of several different types of bad rashes, but not the rash on his hands you see with RMSF. I think he just had a different rickettsial bacteria similar to RMSF. Our LLMD said it can cross react with bartonella and maybe he had that but just did not test positive for it. Rickettsia parkeri is in the ticks in our area, so maybe it was that. He was on almost two months of ceftin and a few weeks of zithromax, plus 4 weeks of doxycycline when we did the lab work. Colleen
  6. Which antibiotic and dose was she on? Yes, all 4 of my kids have gotten strep while on antibiotics (augmentin and zithromax). One child also got an ear infection when on antibiotics. One reason, besides the wrong antibiotic or dose or length of treatment, could be the adenoids and/or tonsils are harboring strep. Colleen
  7. http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain This article talks about the international protocol is a T&A for PANDAS. All 3 of m y kids had "normal" looking tonsils until they were removed- then dr saw what a mess they were. Same with my nephew- looked fine until they were removed. Colleen
  8. We have had luck in the past with cephalosporins. If my kids get strep while on zith or aug, we go to a cephalosporin. Keflex(cephalexin) has helped, but I think cefdinir (Omnicef) worked a little better. There is also cefuroxime (ceftin). Colleen
  9. Happy belated mother's day to all the great moms on here. Colleen
  10. Just posted comment. Thanks for finding that! Colleen
  11. That is amazing! How can we go about trying to get this legislation in each of our states? Colleen
  12. I am also trying to understand my son's low wbc. In March his wbc was 7.1, now a month later it is only 3.5. He has been treated for Lyme since Feb 28. Shouldn't the wbc rise and not fall? he has not had any illnesses/viruses in the past month that I am aware of as I know that can drop the wbc. he recently tested negative for babesia, bartonella, erlichia. His IgG was positve for rickettsial fever abs, RMSF. Colleen
  13. JTsmom- That makes complete sense b/c he had multiple, different extreme rashes, but not the typical one you get with RMSF (on palms and soles of feet). This is what it probably was or is, the rickettsia parkeri. Thank goodness my LLMD put him on doxycycline despite of his age. I only kept him on the doxycycline for 3 weeks b/c I was nervous about the possibility of teeth staining although my LLMD said at a recent conference, the Institute of Medicine said teeth staining with doxy was an "urban myth", that it only occurs with tetracycline. I have searched high and low for confirmation of this and here it is, straight from the CDC themselves. It is the treatment for rickettsia in any age person, endorsed by the AAP. The bolded and underlined is mine. http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5504a1.htm Doxycycline is the drug of choice for treatment of all TBRD in children and adults. This drug is bacteriostatic in its activity against rickettsial organisms. The recommended dose is 100 mg per dose administered twice daily (orally or intravenously) for adults or 2.2 mg/kg body weight per dose administered twice daily (orally or intravenously) for children weighing <100 lbs. (45.4 kg). Intravenous therapy is frequently indicated for hospitalized patients, and oral therapy is acceptable for patients considered to be early in the disease and who can be managed as outpatients. Oral therapy also can be used for inpatients who are not vomiting or obtunded. The optimal duration of therapy has not been established, but current recommendations for RMSF and HME are for treatment for at least 3 days after the fever subsides and until evidence of clinical improvement is noted, which is typically for a minimum total course of 5--7 days. Severe or complicated disease might require longer treatment courses. Patients with HGA should be treated with doxycycline for 10--14 days to provide appropriate length of therapy for possible incubating coinfection with Lyme disease (45). The use of tetracyclines to treat children with TBRD is no longer a subject of controversy (56--58). Concerns regarding dental staining after tetracycline therapy have been based primarily on studies conducted during the 1960s that involved children receiving multiple courses of the drug for recurrent otitis media (59,60). The propensity of tetracyclines to bind calcium can lead to darkening of the teeth if the antibiotic is ingested during the period of tooth crown formation. More recent studies in 1971 and 1998, however, have demonstrated that although multiple exposures to tetracycline increase the risk for tooth staining, limited use of this drug in children during the first 6--7 years of life has a negligible effect on the color of permanent incisors (56,57). Beyond ages 6--7 years, the risk for tetracycline staining is of minimal consequence because visible tooth formation is complete. Moreover, a prospective study of children treated with doxycycline for RMSF demonstrated that these children did not have substantial discoloration of permanent teeth compared with those who had never received the drug (56). Because TBRD can be life-threatening and limited courses of therapy with tetracycline-class antibiotics do not pose a substantial risk for tooth staining, the American Academy of Pediatrics Committee on Infectious Diseases revised its recommendations in 1997 and has identified doxycycline as the drug of choice for treating presumed or confirmed RMSF and ehrlichial infections in children of any age (61,62).
  14. Thanks for the replies. When you say she was exposed, did it show up in bloodwork? My son was on three weeks of doxycycline and I wonder if that is why his IgG is positive and not his IgM. I also don't know if three weeks of doxy is enough. Colleen
  15. My 5 year old son has been treated for Lyme since end of Feb. after deer tick embedded, probable erythema migrans rash, and IgG western blot bands 23, 30, 41 positive. Just got more labs back and I need help interpreting please. The results read: Rickettsial Fever Abs RMSF, IgG, EIA POSITIVE RMSF, IgG, IFA <1:64 <1:64 negative 1:64 positive recent/active >1:64 Q Fever Phase I negative Q Fever Phase II negative Lyme PCR, Bb negative Note says this negative PCR does NOT rule out possibility of infection or Lyme borreliosis. His bartonella and babesia duncani (WA1), and erlichia were negative. His MTHFR negative. His WBC are low at 3.5. They were also low when we did initial labs on Feb. 28, then were back in normal range with labs done March 16, now labs done April 25 back down to 3.5. His other out of range labs are HIGH Eos 6.0 normal(0-4), and LOW neutrophils(absolute)1.1 normal(1.2-5.2) His western blot (again done at lab corp) is different then it was in February. It was positive for IgG bands 23,30, 41 in Feb. Now it is only positive for IgG band 41. Serum creatinine HIGH at 0.60 normal(0.3-0.59) Both IgG and IgM mycoplasma pneumo negative Rocky mountain spotted fever IgM 0.07 negative negative <0.90 Thank you so much for any help! Colleen
  16. I wanted to add to not let her get any vaccines at all for the time being. Could the vaccine have triggered the seizures? Have they done a throat culture (grow it out for 72 hours). Have they checked strep titers (ASO and ADB)? Colleen
  17. Have you tried azithromycin (zithromax)? It gets to intracellular strep, which Augmentin sometimes does not. I do not understand why a PANDAS dr would stop the Augmentin after only two weeks, especially since it worked so well. Stopping and starting the same antibiotic can sometimes cause a resistance to it. The treatment dose for zithromax is 12mg/kg/day. Colleen
  18. My son's CD57 is 24. His % is 1%. He was negative for babesia microti, but we are waiting for results on babesia duncani (WA1). My LLMD said she sees #s in the 20s with babesia. Should have results this week. Will post. I have read everything I can find on the internet about CD57. What else can cause such a low CD57? My son is only 5 years old.
  19. Please let us know how she is doing when you get a chance. You will be in my prayers. Colleen
  20. Doxy is just not supposed to be given to children under 8. A 13 yo should be fine and would be my choice for that age for a TBI. Colleen
  21. Doxy is just not supposed to be given to children under 8. A 13 yo should be fine and would be my choice for that age for a TBI. Colleen
  22. Doxy is just not supposed to be given to children under 8. A 13 yo should be fine and would be my choice for that age for a TBI. Colleen
  23. I would definitely dose twice a day b/c the half life is short with augmentin and once a day you would not really be covered. Colleen
  24. Does anyone know if it ever occurs that a person has one or more TBI, but not Lyme disease? TIA. Colleen
  25. Have you ruled out Lyme disease or other tick borne illnesses? I was reading over your posts and a lot of the symptoms, especially the night sweats and agression can be caused by babesia. Maybe you could post your detailed history on the Lyme forum and get feedback. Colleen
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