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nitshel

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  1. For those of you who have tried LDI for strep - what has been your post LDI experience - does your child still get strep infections? if yes, how do they react to these infections - do they get regular strep symptoms (minus flare)? Do you see their immune system fighting these infections? My worry is that if i get my child "sensitized" to strep, his body is going to ignore strep as an antigen - his defenses are going to be lowered as a result of the sensitization. Hope this makes sense.
  2. Our ds was stable and then one day we missed giving him his antibiotics the entire day and only got to it around 8 that evening - with just the missed morning and afternoon dose, we saw some tics resurface. why do just two missed doses make the tics come back - given that he has been on antibiotics for a while,I would think it would take a couple of missed days for the symptoms to resurface. It’s very disheartening - seems they are always right beneath the surface. what has been your experience?
  3. LDI for Pandas/Lyme/tics

    Wondering why LDI is not big news in this community given all of its purported benefits - the information on the Internet seems to imply that is resolves all Lyme and Pandas issues. If this is true, why aren't people flocking to it.
  4. Hello - have you all heard of and considered Low Dose Immunotherapy (LDI) for your children. There is a very nice YouTube video of Dr Ty explaining the use of LDI for lyme/pandas. He is a very convincing speaker and we are going to talk to him. Wanted to know if you have any feedback for us.
  5. Can someone please PM me the full name of “ Dr. J” (in CT) who is reputed to be one of the best LLMDs in this forum? thanks
  6. Best treatment for Mycoplasma?

    Well, we are being treated by Dr B who knows about Lyme- we just did another Igenix test - let’s see what comes out of it. But right now it’s a daily battle...
  7. Best treatment for Mycoplasma?

    Adding update. Doc had DS on Clarithomycin with no effect after 2 weeks. Then switched to Minocycline. Titers for Myco are still over 5000(!). Any ideas on how to bring it down? Is this just a misguided immune system producing antibodies or is there really an infection that the body cannot shrug off despite multiple abx?
  8. Thanks! We tried Reston Hospital but they refused. We will try another hospital and see if they are open to doing the blood draw
  9. Hello All Our doc wants to check for Lyme and Bartonella and wants us to do Igenix and Galaxy Labs. Does anyone know a place where we can do a blood draw in Northern VA (regular labs and hospitals don’t do it) thanks!
  10. So we got a blood test done for DS 10 days ago who is going through a bad flare and it came back positive for Mycoplasma. He got 5 days of Azith from Pediatric doc but it’s had near zero effect. We want to go to a PANS doc and ask for something stronger- any suggestions on what could work best? DS is 12 yrs old thanks!
  11. Yes we did a pretty comprehensive screening for mold a couple of years ago. Didn’t find anything- including in the air vents or the bathroom walls (where it tends to get wet) Really wish we had a real life “Dr. House” who could help make sense of all the factors and permutations.
  12. I agree- it’s so frustrating to find the triggers. We are still dealing with the flare. DS is on Amox-Clav and Ibuprofen. Looking for some way to tamp the inflammation down - herbs and supplements are not working (or work too slowly) 🙁🙁🙁🙁 I sometimes feel like there are just no quick and good options when a flare hits- it’s abx and Ibuprofen or really nothing else- unless you want to try a major intervention like steroids or IVIg or Plasmaphoresis
  13. We tried Vit D mega doses last year and a whole bunch of supplements to fighting inflammation. I’ve come to realize that only a massive intervention can end a flare - and am thinking of steroids. prednisone did not work for us so are there any other powerful drugs that can do the trick? The alternative is to chug along for months on end with endless pills and blood draws and sleepless nights. Our DS is a trooper but I can tell his confidence and optimism is running out...
  14. Thanks bobh. My line of thought: Tics began manifesting mid-August so it can’t be school (still summer break) or home (nothing changed). Makes us think it must be environmental - and that narrows it down to an allergen or an infection. He did not have a sore throat or fever so I’m leaning towards allergen. But for the life of me I can’t figure out what that could be - DD is in allergy shots for pollen, grass, weeds and mold too (I think). Right now he is in a flare and on Ibuprofen and abx (Amox) - with limited effect. At some point we will have to discontinue the Ibuprofen. The last time we have DS steroid (prednisone) he had a huge spike in symptoms so we are leery of that route. Not sure if anything else exists out there to quickly ramp down inflammation. Thoughts ?
  15. Hello everyone- we’ve been away from this forum for a while. Quick history- DS had bad tics - vocal and motor for 4 years. Treated him for Lyme and Co infections for a long time and even did IVIg but nothing really helped. Cunningham panel was “likely” but not definite. Lyme bands were indeterminate. However When we began treating his allergies (through shots) a large percentage of them went away and we were able to take him off the SSRIs. Over the past18 months we have seen a pattern. He is symptom free for the summer and then when we get into Ragweed season his tics come back. They become really bad in Oct/Nov And they stay until next summer. We do sinus rinse and Quercetin and Vit C but minimal effect. What are we missing? We told our doctor( DrB ) and he does not think it is histamine related (since DS is being treated for Ragweed via the shots). Any ideas on what we should be doing?
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