PacificMama

Hi, I just wanted to add that for my daughter, who was successfully treated for lyme by one of the top docs, Omnicef was one of her primary abx. Mary

Nancy and LLM, FWIW, my older daughter did this exact same thing. She would later refer to it as doing "statues" (she was about 6-7 at the time). She has been successfully treated for lyme, and these symptoms resolved with treatment. I was never sure if this was some sort of neuro glitch, or just OCD. It seemed uncontrollable to her. I remember bringing it up to her LLMD, but now can't recall what exactly he said about it. This started happening right before she relapsed into only neuro symptoms (ocd; chorea movements; hippity-hops; etc).

thank you Michael... this was helpful! Mary

Hi Patty, We have relatives who took their teenage son for evaluation at Columbia. I'm not sure if it fell under the "2nd opinion" designation or what. And I can't tell you what exactly was evaluated, except that it was pretty thorough. Their hope was to get the "diagnosis" from somewhere official and respected so that they could get the proper abx treatment back in their home state. I know they felt like it was a good experience, and of course liked Dr. Fallon very much. I do think it was fairly expensive. I haven't checked the Columbia site, but I know from time to time they have trials going on, where participants can get treatment for free/reduced. I'm sure you could get better info from just calling Columbia. Alternatively, there is http://www.n-e-t-s.org/ This is the practice of Dr. Leo Shea, current VP of ILADS. Here is their blurb: N-E-T-S was founded in 2001 by Leo J. Shea III, Ph.D. to provide neuropsychological evaluation and treatment services to individuals diagnosed with neurological and autoimmune disorders. Since it's inception, N-E-T-S has opened offices in both New York City and Boston. Hope she is doing better soon. Mary

Davros, I will pm you the name of a doctor who practices outside of Chicago. He treats patients with lyme and related infections, and also PANDAS. He has a relationship with Dr. K, and refers his IVIG patients to him. This doctor could most certainly help you to consider and test for infectious possibilities. Best wishes. Mary

Hi Fixit, Sounds like not the greatest... and maybe you would be better served elsewhere. But perhaps useful for some things. The Marshall Protocol would throw up a caution flag for me. We had a thread going here a while back if you want to look at that. I would just urge great caution before going down that path. Look forward to hearing your thoughts after your Dr. B appointment... I suspect you will see a great contrast. And yes, if you want to PM me, I'd like to hear about your experiences with parasite cleanse when you get a chance. thanks. Mary

WD, So glad your appointment went well, and you've found another doc for your team. One great thing about most LLMD's, regardless of the infection causing problems, is that they are on your side from the moment you walk through the door. No need to plead and convince. It's a nice feeling. I'm not sure what "local" is to you, but if you feel comfortable, could you please pm me the contact info for the llmd -- we have a relative looking and it sounds like you like this doctor enough to recommend him. Best of luck going forward. Mary

Hi Jodie, While the details may still be confusing, the big picture is the same: You are dealing with tick borne infections. And your son's diagnosis is perhaps another confirming clue. And the history you have described for yourself. I don't think it's imperative to have it all nailed down right now. Treatment will reveal more clues, and dictate direction. I posted this in another thread, but it's worth repeating that LLMD's will refer to TBI's as "borrelia-like infection"; "bartonella-like infection." Too many strains; too many still unclassified pathogens. But they do respond to treatment similarly, so that is the good news. Good luck with the Dr. K ambush! go for it. Mary

Cobbie, You've gotten lots of good advice from others here. It is simply just a sad fact that there are people who can't imagine how a physical illness might make a person (especially a child!) behave "worse" than they might otherwise. I don't know why... because pretty much everyone has at least had a headache and been snappy. As lymemom said, lyme is "invisible", and so people can't see the disability. I have to say, I would have always thought of myself as a caring / sympathetic person. But having the experience of having a sick child who sometimes just behaved badly in public -- this has made me a much more humbled person. When I see some child throwing a tantrum, I just say to myself "who knows what that chld may be dealing with". Maybe before, I sometimes might have thought "poor parenting". You just need to tell her that with all due respect, she just doesn't know what it's like. And you hope she never has to experience it. But right now you are handling things exactly as you should -- with the kindness and understanding that your child needs. Mary

Thank you so much to everyone for your replies! The information is very helpful. I should have mentioned that I do give probiotics and various supps to my daughter. We just switched from Theralac to Custom Probiotics (I do think theralac is great, but with with the bulk powder of Custom we can regulate dosages easier for our whole family). I am going very slowly to increase dosages on things for her -- she is so sensitive. Over the past couple of years I have tried several times to introduce probiotics to her (before we knew lyme or yeast, etc), and she literally would herx with symptoms and feel worse. This is just from the probiotics, as she was taking nothing else. Anyone relate to this? Now with the nystatin and clay, she is tolerating the probiotics well. From ped and GI specialist, she has had every test under the sun -- including celiac panels, parasites, giardia, etc. Nothing shows up. However, I would imagine that other more knowledgeable docs would use different labs & tests / different evaluation to make better determination of these possibilities. One doc is now treating her for yeast, and we are finally off to llmd next week now that we know lyme. She was prescribed prevacid for acid refulx at some point, but I never felt comfortable giving it to her. Such a hard call, of course I wanted her to have relief, but then I felt it would also be difficult to determine the actual cause of her problem. Again, this was before we knew lyme. I have to say, I don't know if it's the clay or the nystatin -- or both -- but taking these 2 things has greatly improved the acid reflux situation to where she is barely complaining of it at this point. Yes, I do believe that our whole family would all benefit from going GFCF. I have been saying/thinking this for a while now, and I just need to take the plunge! I am halfway there, but I know halfway doesn't count. Otherwise, we keep a non-toxic house, and eat as organic / natural as possible. I have reduced EMF's as best I can (no wireless; no cordless, etc... I've seen the evidence of how it helps!). But I would like to inquire further about some of the devices some of you use. I am interested in many of the things mentioned here, so I will put together my thoughts and ask back for more info. We LOVE our llmd for those of you who know who he is, but given his overwhelming practice he sticks with tradtional treatment. We have a great referall for a naturopath who will help us through the rest of this. Michael, I have seen the info on Allergir Immun for some time now. It certainly looks interesting, but perhaps a little daunting at this point. Also, right now I am cautious of doing anything to detox metals without guidance. I have heard Dr. C say a couple of times (and she is relaying the advice of another who I can't remember right now) that you don't want to try and move metals too early in TBI treatment. I'm certain this is an issue with my daughter, but I just need to get some more educated advice about this. I'm glad it is helping you! OK, my big question is this: I just wonder about not starting any abx until she gets her gut better, or the yeast under control. Is anyone's doctor advising this? Or what about the possibility of those darn parasites? Because I believe the K protocol says do this first ... is that right? I realize that the abx will will help the infection in the gut too, so I know there is that side of reasoning (and I'm sure that's where the LLMD is going to come down). I have been at this lyme game for a while now, and my older daughter is doing great. But I feel like my younger daughter is a different case, much more multi-infectious in nature. That's just the way it feels to me. Thanks again everybody! You've been really helpful.

Hi all, I’m looking for input on potential testing / lab work / consideration for things that go along with lyme and coinfections. (we are pretty well covered in considering lyme, and all the major coinfections that go along with lyme). Mostly, I am looking for feedback on things that may affect the gut. This is for my youngest daughter, and we have a llmd appointment next week. She does have positive Igenex. (as a reminder, my older daughter has successfully been treated for her lyme – but was such a different case than this younger daughter). My younger daughter’s (6) major problem has been gut issues. Horrible chronic pain for years – with acid reflux, bowel issue, and frequent urination. She has many food & enviro allergies. (she does have other lyme symptoms… such as migrating joint pain, etc. – but the gut stuff is the worst). We have recently started her on Nystatin for yeast, and already have seen good improvement in her complaints of pain. Shortly thereafter I started giving her bentonite clay (but at this point we are doing a smaller dosage then some here). The clay is likely helping with acid reflux and helping the pain as well. (as well as detox from yeast die-off). She now sleeps through the night, where before she woke in pain nightly. So wonderful! I have held back on starting abx to see what effect the Nystatin would have alone. But I realize that lyme greatly affects the gut, so we will likely start them soon. I was thinking that we should heal her gut a bit before starting abx. So, I’m looking to compile a list of things to talk to her doctor about. I know that different LLMD’s consider/test for different things. I’m looking for feedback on what other things you have tested for / treated for / considered that may affect gut dysfunction. (Things outside of the normal lyme / co’s). Such as parasites, biofilms, etc. And if labwork was done, which labs/tests were used. Thank you!

Thanks for posting this -- the symptoms you posted are often found in lyme. I know different kids/people who had the difficulty swallowing/gag reflux. When my older daughter first became symptomatic -- she was not yet 3 -- her most defining symptom was great pain in her facial/jaw area. She would say a million times a day how much she hurt. It was unbearable, and we were in a panic running her all around to every specialist imaginable. My mother-in-law (in denial of her own lyme) had been diagnosed with Trigeminal Neuralgia -- which is dysfunction of the 5th cranial nerve. It is an excruciating pain, and this is what we at first thought my daughter might have. Of course, we eventually got the positive lyme test, and began abx treatment (by this time, my daughter had evolved into a massive list of symptoms). The facial pain saw immediate improvement, and slowly dissipated thereafter over the course of several months. When it did we knew we were on the way to symptom-free! But yes, these nerves can be affected a great deal.

Most labs running the western blot will follow the CDC reporting criteria for determining a positive, which is a positive of at least 5 of 10 possible bands. Often misunderstood by many physicians, this criteria was originally set up by CDC for reporting purposes only -- and they do not intend for it to be diagnostic. Also, due to a short-lived vaccine years ago, the CDC excludes the 2 most specific bands for borrelia -- and so most labs do not test for these. The Igenex western blot is considered superior because 1) it does test for these 2 very specific borrelia bands, 2) it includes more strains of borrelia; and 3) it is a more sensitive test. The standard for OVERALL "positive" for Igenex is less bands than the CDC. Their reasoning is that several of these bands are exclusively specific to only borrelia, that having just a couple of them would most certainly indicate borrelia exposure. Buy to your question... why do the labs need to have multiple bands present to give an overall positive? As far as the CDC, well their standards are just lunacy all the way around. As to Igenex, I would imagine that it's just good science to require confirmatory positives on the individual bands. The 2 bands with "issues" on the Igenex are the 41 (which could indicate another spirochetal infection); and 31, which may cross react with certain VIRUSES. This is why they have the 31 confirmatory test -- in case a person only tests positive on 31, and they want to verify. (I have seen people ask why they just don't do this 31 epitope in the first place. I imagine it's because it is an additional testing process that of course costs additional money to have done. Not everyone will need/want to have it done, and would not want to have the increased cost up front). Many llmd's would consider that even one positive on an exclusively-borrelia-specific band (or indeterminite) indicates exposure. But exposure is not disease. The labs are just one piece of the pie of a clinical diagnosis. History, exposure, symptoms, physical exam, responses to treatment -- these are the other pie pieces. A skilled doctor, with experience, is invaluable. One final thing. Many llmd's refer to these infections as borrellia-like infection, or bartonella-like infection. The fact is, not every bacteria, virus or parasite that is transmitted by a tick has been identified. Sort of frightening, but true. These doctors do an incredible job with the tools they have to treat their patients the best way we currently know how. But the science will keep evolving. (and I'm sure one day in the future there will be an answer as to why that band 41 shows up alone so often). Hope that helps!

OK... I just wanted to post again because I wonder if I gave an incorrect impression. A person can certainly have lyme, and show up with only Band 41 positive. I more meant to say that Band 41 is fairly specific to lyme, but not completely specific because there are other spirochetal bacteria. Not many, but some. I see on your other post that you are getting lists of bacteria with flagella -- but just to clarify, it is the flagella of Spirochetal bacteria. Also worth noting, is that usually band 41 comes with the note that it is typically the first band to show positive for IGM. But no matter, It always goes back to the notion that lyme is always a clinical diagnosis -- where lab work is considered, but thankfully not wholly relied upon. Thanks. This helps me narrow my googling. DD is not overly "lymey" in her results so far and the LLMD has been reluctant to treat based on test results and clinical thus far. But other things (yeast, h Pylori, myco, parasites) have been negative as was Bartonella. The one result that keeps getting more ++ every time we test is 41. Her issues are mostly GI and neuropsych. For two years, we've just kept this on the radar. Nothing severe enough to pursue. But lately, things are escalating and it's like watching the little bubbles form on the bottom of a pot of water just before it starts to boil. So I was going to use my anxiety-driven insomnia to see if other things could be worth investigating.

LLM, I always see Band 41 explained as the flagella of specifically a spirochetal bacterial -- and the only three spirochetal bacteria that are ever listed are borrelia; syphilis; and dental spirochetes. Band 41 is specific enough to be included by the CDC and Igenex, but is not one the bands that is considered specific to only borrelia. I see people have posted other possibilities, but I do think it is identified with spirochetes only. As to strep, Dr. T (pandas doc) stated on this forum some time back that "It is NOT found in streptococci or mycoplasma, so infection with those can't be confounding this result." He too was hypothesizing as he was seeing a lot of band 41. Many (most?) lyme docs would not consider a positive on band 41 alone to be a positive for borrelia. But again, it would be evidence to be considered along with symptoms / history when making a diagnosis.