nitshel

Thanks for your thoughts powpow. So it looks like your DD was in the hospital for the IVIG? Several posts on the forum allude to IVIG as an out-patient or even as an at-home procedure. What determines this? I'm also not clear on when LD IVIG is chosen versus HD IVIG...?? It looks like we may have to go to Dr.L for IVIG prescription - that way insurance will likely cover (shes a neurologist and apparently that is what Ins. companies look for as prescribing entity, rather than LLMD or Alternative medicine). Does anyone know of any other doctors in the DC/ Northern VA area who are child neurologists and are OK prescribing IVIG for kids?

Hi Wombat 140. If you look up some of my earlier threads you'll see one with the title "Best Immune Boosters". Alternatively, here is a link: http://latitudes.org/forums/index.php?showtopic=21949&hl= From our experience, its unclear how well these work since many of them take a while to take effect and its not clear how one can measure the efficacy of these things (perhaps by measuring IgG /IgM levels?). In any case most people on the forum seem to have used something at some point. I hope this helps. Feel free to add more questions / comments to the "Immune Boosters" thread...

Reviving this thread...What are your collective thoughts on IVIG risks - I've been reading that since it contains blood products from thousands of donors, there is a risk of infections in the IVIG products? How real is that fear? And secondly is there simply no alternative to IVIG? Aside fomr PEX (which seems even more invasive) and immune boosting supplements (not powerful enoough) - is there no otehr option?

Our LLMD has refused to give us anything to treat for parasites. She feels it will be a waste of time and the side-effects might make DS worse. Even when we asked for natural / herbal options, she was not interested....a little mystifying for us....if there is no harm done by taking say Wormwood Complex (which seemed to be the top choice), why all the fuss...I guess it depends on the LLMD...oh wel...

Thanks sss - please let m know how it goes with the thiamine (what brand?, what dose?). As far as yeast /gut issues we've been very good about Nystatiin 2x/day and probiotics every night so I dont think that is the trigger. Its funny but the common symptom (and this has been a common thread for years) is the on again -off again sniffling / cold-like symptoms. Sometimes they are slight and sometimes pretty badHe has a mild case right now. Its likely NOT something he caught from anyone - it comes and disappears in 1-2 days and is worse at night - very unlike a normal cold. Is this lyme / co-infection? Is this persistent strep hiding out somewhere and biding its chance? Is this an indication of immune malfunction? Does anyone know? Thanks

Update from us. We had the home tested for mold - came out very clean. We also had an appointment with LLMD - she says it is very normal for symptoms to worsen when one encounters a new stressful situation (in our case, summer camp) because the immune system gets stressed - and that the flare will die down slowly. She says there is no indication to treat for parasites.... Has anyone else had a similar experience? Its been 3 weeks now and the tics are just as bad. We had a month of heaven when psych meds were way down - now we are back to original dose (and even then they are still there)....still not sure what could have triggered the regression. The only clue we have is that DS was sniffling the day when symptoms returned with a vengeance. Any advice from the sleuths out there?

Thanks - I'm looking for a mold specialist - checking to see if we have any ERMI tests available near home. Any tips on where mold loves to live? Our house is not that old (13 years old) and in good condition. Is Bathrooms a key culprit? Air vents? Inside walls?

Thanks all - so I guess my follow up question is - did you see clear signs of parasites (in stool, bloodwork etc.)? Or did the abx treatment plateau / not work and that led you to a hunch that parasites could be involved? Thanks!

All, I wanted to get a read from people on the forum on their experience with using herbs to go after parasite co-infections (with Lyme). By parasites I'm including blood-borne plus intestinal. I dont know if DS has any but want to "cleanse" to make sure. Any suggestions? Buhner herbs? Other protocols? If not herbs what traditional drugs worked? Thanks!

Thanks sf_mom. Our LLMD does not want to give doxy (although it is a really good candidate) because DSs baby teeth have not all fallen out yet and doxy could affect the adult teeth that are yet to come. We've stopped tindamax for now. Trying to control the tics through anti-inflammation (Boswellia, Ehnansa, Fish oil)- even the psych meds are having a limited effect....

Thanks sf_,mom - I'll pick up that thread with our LLMD. But to clarify, what you're saying is swap one of the antibiotics DS is on, with another? Right now he is on a cocktail of abxs - Clarithomycin, Rifampin, Tindamx (pulse) and Cefdnir. Do these 4 not cover all of the bases (i.e. Lyme and Co-infections)?

Thanks all - good pointers. We had been trending down on Risperdone and Intuniv - very very slowly - as SSS points out but now we are being forced to raise them up again. We've been off all abx - today is day 3, thinking that this might have been a herx - but so far there has been no effect on the tics...so am not sure if herxing is the issue. So am really questioning what the abx have been doing for 7 months if there has not even been a 10% improvement (i.e. we have not been able to titrate down on any of the psych meds). But I temper that thought when I see that there was one whole month when we were down on all the psych meds and had no tics coming back. We suspect that something (mold in one of the summer camp buildings?) might have triggered something....so hard to tell.... We will consider doing an immune system work up - although in the past DS's IgG and IgA counts were in range. Specifically, I read on this forum that people found anti-protozoan drugs to have an impact? That's something we have never tried. Plus we are considering IVIG.... Please keep your suggestions coming. We have a month before school begins and would like to find a few answers before then. Thanks to everyone!

Hello - I'm curious to see if our DS might have rheumatic-related problems that could explain his tics that dont seem to be affected by abx (7 months now).. Can someone call out what tests and from which labs are best to check for "rheumatic fever of the brain"/ Thanks!

Rachel - our LLMD says mold testing is iffy and not really value for money. She suggested charcoal (which we have been giving). The strep and rheumatic fever tests - are these through traditional labs? Yes the psych meds seem to help - but we hate using them - DS becomes lethargic and puts on weight - but its a deal with the devil, I suppose... Wondering how the immune system plays into all this ... or if this is herxing related - I've read about a 3 week cycle for Lyme - perhaps the psych meds had been "masking" this cycle but now it is becoming apparent...so confusing....so depressing...

Hello All, We've been in the fight for almost 2 years now - you can read our earlier posts to see the history. But here is the brief update and some questions for the experts out there. His tics were so bad when the erupted that we had to use psych medicines even though we hated it - nothing else worked. We found a good LLMD - and DS had a positive test from Adv Labs. DS has been on a cocktail of abx for 7 months now - Tindamax, Cefdnir, Calrithomycin and Rifampin for Lyme and co-infections. Hes also been taking herbal supplements for tamping down inflammation (Enhansa, NAC) and detox (Burbur). We've also been doing charcoal for any mold issues. Over the summer (past 4 weeks) we've been trending down the psych meds to the point where we thought we could eliminate them entirely. Over the past 3 days however the tics have come back fast and furious. So my questions... 1. Have we missed something? Parasites perhaps? 2. I would have thought that with the intense attack against Lyme there would have been SOME improvement - is this thing really so hard to kill? 3. Should we consider IVIG? 4. Any other ideas for tests / treatments? Thanks!

All - quick q - what tests did you use to identify and track Myco? Was it the test through LabCorp?

Thanks powpow and sss! If you dont mind my asking - how much did you end up paying for it - and did Insurance eventually cover any of it? Thanks!

Thanks - we tried Dr. L and did not have a good experience. Any others in the nearlby areas / states? I think there are two aspects to our question (i THINK). The first is a prescription for IVIG - and the second is where to get the actual procedure done. Is my thinking correct? Dr. T and some of the other docs wwe went to can provide the prescription but how do we get the actual procedure done? Thanks for all help!

For our DS, we are considering IVIG and looking for Doctors who will be willling to prescribe this. We are in the Northern VA area. Any advice/recommendations will be much appreciated.

We are considering IVIG for our DS - 8 years old and 75 lbs. Are all IVIG brands created equal? Are some "purer" than others (in terms of contaminants and such)? I recall reading a post where someone compared the different IVIGs but cannot seem to find it again. Can someone help us understand the different options out there? How did you make your choice? Thanks!

Just came across this thread. Our DS is going through Lyme treatment - multiple Abx and several supplements. His tests consistently come up low on Vit D. I am confused at the moment - should we give him large doses to get the numbers up (currently around 25) because Vit D is part of the Immune response? Or should we hold back because we end up feeding the Lyme family of infections?

Its been a while so wanted to post latest update on our case. Since mid Dec son has been on Abx to treat Lyme - Azith 250mg,Cefdnir and most recently (past 3 weeks) on Sulfamethoxazole (Bactrim). Past week or so (i.e. not immediately after adding three Abx but a few weeks into the regimen) DS has begun to show new symptoms - he "writes" words and numbers in the air with his fingers - and some facial grimaces are back. We have him on Nystatin to keep the yeast at bay and on several anti-inflammatories but these new symptoms seem to be here to stay. Now and then we also use lemon water to detox - I don't want to give DS charcoal and others stuff - poor thing is already on 17 pills.... Soon we will be adding Tindamax (pulse) to the triad of current Abx - I know its a powerful drug and have read several posts about the exacerbation of symptoms it brings about so we'll take it slowly. Wondering is anyone has seen similar trends in symptoms with Abx - any advice on how to handle? Tips and traps? Anything we should be doing / thinking about?

@Dedee - how did you check for Lithium levels? Which lab? Thanks!

I think there are supplements and/or herbs that could protect the gut lining while on Abx...I know LLM mentioned one but cant seem to find the post...

OK - so we got the Zinc challenge in the mail and I gave DS 2 tea spoons (not table spoons as the bottle suggested) to gauge reaction. He said it was mildly weird - "vague taste of berries". An hour later he threw up a little..... Not sure what to make of this. Nothing else in his diet or medicines had changed so I'm putting the vomiting down to the zinc...anyone had similar experience? Does the "mild" nature of taste means he could use some Zinc supplementation? I can try and give it to him again - maybe slip it into his lemonade or something - hoping he does not throw up again.....