Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Posts posted by nitshel

  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. 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

  4. 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...

  5. 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 ?

  6. 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? 

  7. Yes - we plan to do the Real Time labs urine test (although its expensive - $700!!). There is also some not-so-good opinion about RT labs online (http://www.quackwatch.org/11Ind/hooper.html)


    We will also do MARCONS testing (DIY kit).


    But as you point out, there's uncertainty in all of this. It's like playing chess blindfolded - you're not really sure how effective the test is nor the accompanying treatment. Sometimes you fortuitously "checkmate" the disease - but most other times you're back to square one

  8. Hello all, our DS just went through a number of tests. Apart from CD57 being low (which it has almost always been), and his IgE count being high (290) - again something that we've struggled with, his TGF-b1 levels were very high (normal is below 2382, his was 4090).


    Our LLMD says it is indicative of mold but all his other markers for mold are normal. Anyone familiar with this?

  9. "I have never had a general ENT or internist suggest these. It's not a term used generally, and no consensus that this is important, so 3-week nasal cultures are not standard."


    And therein lies the crux of the problem wisdom_seeker - finding a doctor who is willing to think a little outside the box. The fact that much of Shoemaker's theories have no evidence-based outcomes does not help either.


    I'm not sure if it's even worth taking an appointment with a "regular" ENT - we are going to ask out current LLMD about this, but are not holding our breath....


    Many thanks to you and llm for all the great info ...much appreciated. We are doing the nasal rinses with xylitol - not sure how long we can sustain it though...

  • Create New...