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Everything posted by nicklemama

  1. We take a lot more than 120mgs. 500, I think but it might be more.
  2. Yes. Been dealing with them since preschool. Started seeing an ENT about 1.5 yrs ago at urging of allergist. ENT found he had exposed capillaries in his nose. We did a protocol which helped a lot. He was having nose bleeds several times a week. The protocol was a squirt of saline in each nostril followed by neosporin in each nostril 3x a day for 3 weeks. Can't miss any applications. Now we preventively do the saline and Aquaphor each night before bed. He goes weeks and weeks with no nosebleeds.
  3. I have not seen Amy Joy professionally but I have met her in person. She is super nice and ,yes, she has a son with PANDAS who I nearing adulthood. Is the malaronei being prescribed for lyme/babesia? The overwhelming fatigue you describe makes me think Lyme disease. I am being treated for lyme and I can very specifically relate to extreme fatigue.
  4. Interesting about the mag. I'm taking mag glycinate, at the direction of my LLMD, for muscle twitches and I've found it works! My son takes mag transdermally.
  5. My son sees a doc in Michigan that treats both lyme and PANS. She is very knowledgeable but does not advertise herself as ILADS. She is being trained by an ILADS doc, who I see, here in MI. We tested glutathione levels through Quest.
  6. You can get glutathione sublingual, that should bypass the intestinal tract. I have not given my son glutathione supplements and I can't say what it was when he got sick. We started working on his MTHFR mutations almost three years ago. His glutathione was tested earlier this year, for the first time. It was really high. When we got lazy this summer and didn't give the supplements every single day, it fell. Still high past range but it did fall. He does not take NAC. He takes two forms of B12, folinic acid,taurine, L-tyrosine, P5P, GABA, L-theanine. 5-HTP
  7. It's going to be a real challenge to get hm further treatment. Orders will be written for him to go to the local hospital for doxy injections twice a week but I don't know for how long. He lives in a state where I'm not sure any cases of lyme were reported by the CDC last year. I don't beleive there is an LLMD I the state, Oklahoma. I don't know if I would be able to talk my parents into traveling out of state or spending out of pocket money. They are retirees. My dad is 76. I think he also has bartonella but he was IGenex negative.
  8. On Wed, my mom found my dad unresponsive. A CAT scan was normal. A lumbar puncture for cerebrospinal fluid revealed an infection and was sent for culture. He was diagnosed with bacterial meningitis. He was started on multiple IV abx. He remained unresponsive for 24 hrs. For the next 24 hours, he had impaired mental capacity and was being a real stinker of a patient. He has no memory of it. Today, he is back to himself and being moved out of ICU to a regular bed for several more days of IV abx. The cerebrospinal fluid culture came back today. He has Lyme bacteria in it. He has Lyme d
  9. They want to look at the retinas, etc. at the back of the eye. DS had an eye screen at peds who told me he had 20/40 in one eye, made I made the appointment. Turns out, he has 20/20 in both eyes. A nevus (mole) was found on his retina, which is not uncommon, and it has to be followed. I have my eyes dilated every year for retinal exams related to my damaged retinas from plaquenil.
  10. I've sent you a PM. Look in the top right hand corner of the page to access you messages.
  11. I wondered if it would affect my DS, 11. He had his very first eye exam and his eyes were dilated a week or so ago. Havent seen anything out of the ordinary though. Noes been very stable for quite some time now.
  12. Everything eamom said. Titers or no, your son has had Scarlett fever accompanied by behavioral changes. My son has never had titers to strep. The doctor does not know enough about a PANDAS to accurately diagnose. You will need to find someone who does.
  13. Herxheimer reaction to killing off bacteria. Inability to detox the toxins from it.
  14. That's interesting to read. My DS had high D1 on the Cunningham, along with high tubulin and CamKII. He has taken 2000 IU of Vit D for several years, at the suggestion of Dr K. I have never correlated it to any behaviors (and he had a ton of them before taking D). Now, after lyme treatment, he is doing extremely well. Still on D.
  15. Yeah! Glad you are feeling better!
  16. For melatonin, any brand that works. Nordic Naturals is a good brand fish oil. I give my son Nordic Naturals Ultimate Omega. It has the amount of EPA the doc recommended. Carlsons makes good fish oils, too, and there are others. I use Carlsons vitamin E and A. I know the oils used in them are high quality. I give my son Jarrow brand saccromyces boulliardi. Refrigerated probiotics are your best bet. Klair has a good reputation. We use Thera Detoxification Support that the doc recommended. There are other good brands of probiotics.
  17. My DS has allergies, particularly bad to dust/mites. His allergist has wanted him to have allergy shots for two years. I have resisted, for fear of flaring things up again. It has really helped to treat him with Claritin year around. He no longer gets sinus infections from allergies. That was a major point of exacerbation of PANS for my son. Have you tried all the antihistamines? There is also an old one that few allergists think of anymore and it also works for anxiety. I can't recall its name right this minute. I'm betting some one on here can. I use Flonase at the first indication
  18. OCD is part and parcel of PANS. The mistake I see many make is not realizing just exactly what OCD looks like in a young child. I did not see it myself. After I read Tamar Chanskys book Freeing Your Child From Obsessive Compulsive Disorder, I could identify many compulsions in my son. Children don't always present with the typical hand washing or door checking we all think about when we hear the term OCD. I would submit to you that urinary frequency, in the absence of a urinary tract infection, can be a form of OCD. If the child has thoughts that tell they must keep going, that's OCD.
  19. My answer would be many times. For instance, Omega3 fish oil. You want a quality brand that filters it and sources the oil from fish without contaminants. For calcium, there are forms that are not easily absorbable so you want to read labels. In general, better brands(read those that cost more) are the ones that have better quality. It's not necessary in most cases to buy the most expensive brand, but I would not buy a stores generics like a Walmart or Meijers brand vitamin or supplement.
  20. My sons is elevated. He happens to have lyme and co. I was told if mold was a factor his C4a would be sky high, as in the 10,000s. We do not seem to have mold as an issue. We built this house in 2000. No leaks. Dry basement.
  21. The hidden inflammation we found was lyme and co. DS was completely lyme negative on Quest. Not so on IGenex. In addition, he was positive for ehrlichia and anaplasma on Quest. His titers for anaplasma have finally gone into normal range and it's been 1.5 yrs of treatment. He also takes Enhansa for inflammation. We keep allergies at bay with Claritin although he still sneezes several times a day.
  22. I see they are planning to dig into private medical records and I would not sign. Ask them to submit their questions to you and you will authorize what you deem pertinent. The school does not need an open ended permission slip.
  23. I don't know whether to laugh or scream. I wish she knew that my son had zero cognitive behavioral therapy nor did he take anti obsessional medications (except for a trial period of 6 weeks that had horrible results) and now that he's been properly treated for all his infections, he does not have OCD. He currently does not have any tics. He went to the dentist Monday, so I'm holding my breath. He usually gets tics after a dental visit, even with the addition of clindamycin for 10 days. Whatever happened to the idea of getting rid of the trigger? Ugh. She is a psychiatrist isn't she? Th
  24. I think you should go ahead and ask the pedi for a referral. In fact, you might consider seeing a reproductive endocrinologist vs an ob/gyn. I would call and talk to an RE's office and see if they actually see teen girls with this problem. I'm not really sure if they do. I do know they see menopausal women and infertility is their bread and butter. In my mind, an ob/gyn is an expert on pregnancy in women and also does routine care.
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