nitshel

The method of preparation then is to grind 50 large leaves in 100 ml water. How much of the solution do you give and how often? Is it one tea spoon once a week? Trying to determine the dosage.

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.

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?

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.

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.

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

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...

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?

Thanks! We tried Reston Hospital but they refused. We will try another hospital and see if they are open to doing the blood draw

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!

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!

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.

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

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...

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 ?

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?

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

Here are all of the tests 167120 HLA-DR 500124 MMP-9 010421 MSH 004440 ACTH, plasma 004280 Serum tryptase 002170 IgE 004180 Eosinophil cationic protein. We will also be checking for MarCONS Our home inspector did check for mold but did not do a formal ERMI test.

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?

Hello all, I'm wondering if there is one test (or perhaps a small handful) that can confirm with near certainty that a person suffers from some form of debilitating autoimmunity?

"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...

wisdom_seeker, llm - pardon my naivete but where does one go to get a MARCON test done? Can a regular doctor order / do the deep nasal swab - or does one need to go to an ENT specialist?

Yes - we are coming up on 4 months - negligible effect of the high dose IVIG. So we're looking at other potential issues such as parasites (saw a video the other day by melinda sharma and how she got her son back). Please let us know how it goes with Jemsek - we really need to find someone who can play "Dr. House" with our DS's condition. Thx!

Hi We are looking for an LLMD who will be willing to explore the possibility of and test for mold/virus/parasites. Our current LLMD is somewhat skeptical and not open to exploring these alternative root causes that may be concomitant with Lyme. We are on the East Coast but willing to travel. Thanks in advance.

Thanks emst. We just checked for anti Dnase and antistriptolysin via blood test - both were negative / normal. Are there any tests to check for infection in nasal passages?