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nicklemama

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Everything posted by nicklemama

  1. No herxing that I could tell. To be honest, he's been on it for about 2 years now and he was not well when he started taking it. I didn't notice a flare up of worse symptoms though. It has EDTA in it and that is a biofilm buster. It's got a long list of enzymes in it.
  2. A child does NOT develop overnite bipolar. The anger and behavior are symptoms of PANDAS/PANS. It will go away with treatment but it will not go away overnight, unfortunately. Our son was very angry and rageful. Treatment has diminished all his symptoms. The first IVIG did him a world of good. The second we did not see nearly the recovery. We have seen the most recovery and "normalness" of behaviors after finding lyme and coinfections and treating them. We've been at this nearly 5 years now. The last year, things have been very normal in our house. Knock on wood.
  3. Yes, there is very good reason to suspect PANDAS/PANS. My son has never had a positive strep throat swab or titers. We now know he has PANS. He was suddenly ill after a flumist vaccination. We eventually found he has lyme and co.
  4. I'm not sure that article did us any favors. This is the risk when you put yourself out there for the media.
  5. I wasn't going to scare you but I can tell you exactly what it's like. Starts like a cold that turns into a bad coughing cold. I had no diarrhea. ANYTHING can set the coughing spasms off. Starting to laugh, for one. When they start, you CANNOT catch your breath. You cough out all the air in your lungs. The 'whoop' you hear is the person trying to draw in air. It's VERY difficult to do. You feel you will not get enough air, which makes it all that much harder to draw it in. It's VERY SCARY. At the worst of it, one night, I could not get my breath and I tried to tell my husband to
  6. Antibiotics will help lessen the severity. Get to ped ASAP and have EVERYONE in your household placed on abx. I had whooping cough as an adult. Thought it might kill me and I am NOT exaggerating. Another point to remember, vaccines do not always work and those that do wear out. I was vaccinated as a child for whooping cough. Now that I've had it naturally, I am protected for life.
  7. Now you know! We were surprised to find Lyme and co in our son. Treatment has really gotten him so much better. He's on augmentin and biaxin currently, plus supplements for methylation defects and inflammation.
  8. 14-28 days of doxycycline is the standard of treatment. It's a good sign your doc didn't question and wrote a prescription. No idea what Dr T will do but I'm guessing he would be willing to fill for the rest of the month.
  9. Always treat a bullseye rash. 30 days minimum.
  10. Come on now, the comments at the end were most entertaining, lol! References to Obama, vaccination, demonic possession. It runs the gamut. I was quite amused.
  11. You just have to ignore all that. If your child is doing well and has no symptoms there's no point I testing and spending the money. If your child continually relapses and/or fails to get better over the course of time, then you have reason to test. Don't engage in debate. It's your child so there's no debate to it. Here's an example of why they don't like Lab Corp. my son was tested thru Quest. He had on band positive, 45. One year later, he was retested with Igenex. He had 5 bands positive IgG and one band positive IgM thru Igenex. Igenex tests for two strains of borrelia. Ques
  12. Doxy is treatment of choice. My son had anaplasma and ehrlichia and Lyme. The anaplasma and ehrlichia were found first. My son was not hospitalized. He had these infections and we were not aware. He was young and the illness was attributed to something else. Not everyone who gets anaplasma gets so sick they need hospitalization. My LLMD says he never sees a case of anaplasma and ehrlichia where the patient does not have Lyme. Need to follow up on Lyme and other coinfections when he gets out of the hospital.
  13. I'm not sure why the interpretation was left off unless it will come with the D2. Based on the results you posted, you are going to get a likely interpretation based on the high D2 and CamK.
  14. My son took lamictal for a year for rages. Worked well. It's glutamate modulating.
  15. I took doxy for 2 months. I did not lose weight. I can say it can cause stomach upset. It needs to be taken with food. It also causes very intense sun sensitivity. Be careful. I am off it for the summer for this very reason. I'm now on minocycline.
  16. I don't know who is treating these kids or how they got into the research project. Dr. Rosenberg does not treat. He's research only. At least one local doctor tried to refer his PANDAS patient with OCD to Dr. Rosenberg but it was a a no go. Dr. Chugani's research seems to have stalled. I know for a fact he's got PANDAS kids that show inflammation in the basal ganglia and PANDAS kids that do not with his specialized tracer and PET scans.
  17. I have a big thing of permethrin spray to spray our tent and camping clothes but I have not done it yet. We are big on camping. My dh asked if I gelt like going this summer. I want to and I don't.
  18. I was misdiagnosed with rheumatoid arthritis in 1997. All these years, no joint damage, just pain and stiffness. About 6 months ago, things really flared up and fibromyalgia and chronic fatigue were added. I think it was caused from all the stress of dealing with DS these past years. I've been suspecting I had lyme for a year or so but never did anything about it until it got really bad. I didn't really have the time, trying to deal with DS and get him well. Now that he's better, its my turn. Yuk.
  19. I'm from MI. We have a Michigan PANDAS group. See my pm by clicking at the top right hand corner of the page.
  20. Lyme presents as neurological or arthritic. My son has the neuro form and I have the arthritic form. My LLMD considers indeterminates on Igenex to be positive. It's like a pregnancy test where the line is not dark but it can be seen. If there are no antibodies to Lyme you would get no response at all. Your Igenex above shows exposure to Lyme. Those are very specific Lyme bands. If your immune system is not functioning properly it has a hard time mounting a response to Lyme, hence the negatives or lowered response with indeterminates. You should read Dr Horowitz's new book Why Can't I
  21. If your child has trouble swallowing capsules, Carlesons make good tasting liquid fish oils. A PANDAS mom is a sales rep for Carlesons and I've tried samples of the flavors. Not bad at all.
  22. The capsules DS takes does not have maltodextrin in it and rowingmom has solved the mystery of the tastefree. I'd start back up on the Enhansa. You need to start low, 150mg a day for a week and then go up to 150mg twice a day for a week and keep adding 150mg until you get to the dosage recommended.
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