MichaelTampa

Complicated situation and question. I don't have the knowledge/training to really know about all that, but, speaking in generalities, the kidney is important for detoxing. If it's not working, I would expect more heavy metals (and whatever else the kidney might detox) to be circulating around the mother, and perhaps/likely to enter the child. Heavy metals are never good for the neurological system and all that it tries to do, and certainly can impact a child's development. So, I think, generally, they could relate. How likely they would be to relate, specifically, don't know.

Glad the appointment went well. Have never met Dr.J, but have only heard great things about him. Just wanted to toss in my two cents regarding pulsing rifampin. I recently ran across some conversations of people pulsing factive. Factive is a fluoroquinolone (similar to levaquin, which is more well known), and is used to treat bartonella but is also active against borrelia. Anyway, some doctors were pulsing factive, but the results were not good, and some were moved to daily. I have heard of pulsing for borrelia, and the life cycle there is much longer (28 days), so the theory of pulsing feels like it can make more sense. The life cycle of bartonella is so short (daily? 3days?), that pulsing anything to treat bartonella would seem to just lead to flairs and backslide during the period the person is off. Perhaps in the end it could still work, the theory behind pulsing is to get them more active and vulnerable for when you do take the drug, but just seems like, even if it does work, it would have to be a pretty rocky ride.

Don't know if this counts as a "reference", not too much to go on, but, during the ILADS conference in 2010, during the Q&A following one of the talks, Dr. J. of CT, who works with lots of kids, chimed in and added that, in his opinion, the CD57 is no good for young children as regular healthy kids don't start making the NK cells measured by the test until about age 13-15. Then, some docs use it. All I've ever seen is some docs use it for kids, some docs say it's no good for kids. Not really much to go on, I know.

I would think it's possible. Whether that's the case for your son, I think you'll find that out over time with testing and seeing how he does. MycoP can be a serious infection.

Ahh yes, the teeth chattering. I've been doing that one since childhood. For me, it is the same thing as foot-tapping. There is music going through my head pretty much all the time, and it goes to the music. I'd put it similar to echoing the last word in a verse of a song playing on the radio. It is more comfortable to do it than to not do it. If I had to not do it, I could not do it, but I like to do it, it's work to stop it. I went through a treatment break about 6 months ago, and was more peaceful and relaxed during the beginning of that treatment break than I have ever been (except, well, coming out of anesthesia, which sure was spectacularly relaxing!). During that period, I did a lot less of the chattering and echoing and so on. I really think this goes hand-in-hand with the anxiety that comes from these conditions (not anxiety about having the condition, just anxiety as a symptom of the condition).

I think it can be very useful in guideing treatment for lyme, as there are so many factors and complications. If you look on youtube, you can probably find a couple presentations showing it. I have seen some in the past. Muscle testing is used a lot in the alternative health community, and particularly by acupuncturists, certainly EFT practitioners if you could find one of those. I would look there and hope to find someone that would be willing to teach you hands-on. Although teaching that is not their normal thing, some really do enjoy teaching people to help themselves in this way. I have never been able to successfully do true muscle testing for myself. But I use a pendulum to get my answers. It was the one thing I could finally figure out to do. It did take practice over time. If you want to try the pendulum route, I'd be happy to try and help you learn. Would be easier over the phone than posting and email. But, really, much easier in person, and your best bet is to find someone local who can sit down with you and show you. Regarding the "how it works", perhaps google "energy testing" or "kinesiology testing" and you should probably find some articles or blogs out there on the topic.

I grew up in Amherst, New York (suburb of Buffalo), family still lives there, have had lyme since childhood, but live in Florida now.

I think the CD57 is a nice companion test, but not a be-all end-all. Yes, false negatives with western blot. IGeneX is more expensive and less likely to have false negatives, as their testing is more complete. But still, can happen, particularly if body is just weak and not doing much fighting. I have heard CD57 below 60 implies lyme and mycoplasma pneumonia. Some docs think for kids, low CD57 is not meaningful either way, as they supposedly don't start really making those killer cells until age 13-15.

I'm not familiar with that queasy as a herx symptom. Not saying it isn't one, but haven't experienced that at all. I have had a couple supplements cause queasiness, though, when taken on an empty stomach. (And who knows, now that I think about it, maybe that was a herx.) Don't know if you have access to "energy testing" or "muscle testing", but I wonder about the possibility that one of the things you're taking just isn't good for you, or isn't good for you on an empty stomach.

57 is low. 60 is the bottom of the "Reference range", but it is not a sign of health. Was this for yourself or a child? Remember that some feel this test is no good for those below age 13-15, as people may not naturally make the killer cells being measured until this age range.

If I were in that situation, I would probably be looking to buy from one of the online pharmacies as much as possible. magicpharma.com is one of many out there. I would suggest looking online to see what prices are out there. The differences can be dramatic. Of course, some will not be available that way. My tindamax costs about $900 per month without insurance, Factive costs about $1,000 per month without insurance (this is a fluoroquinolone not typically given to kids) and I believe is not available online. Ketek, I think about $500 per month without insurance. I think it will vary quite widely depending on the drugs. I know some of the babesia ones like Mepron are much more, and perhaps the more widely used ones like augmentin / biaxin and so on would be cheaper.

I would encourage you all to at least do some of the simple/cheap tests that insurance will mostly cover, like CD57 from Labcorp and ELISA and western blot. And, also, I think a very good idea to find a long checklist of lyme symptoms, I've run across these on the web here and there, and have them filled out. Try to get at what symptoms might really be there that are being explained away as supposedly having other reasons. I think the key to doing this well, is you have a lot of help from someone else who spends a lot of time with the person. People get caught up in the way their life is, they can easily lose track of what normal is for the rest of the world. I suggest this because, look, lyme treatment is no picnic, there has to be a significant reason to do the treatment, so this might help assess what reasons there really might be for treatment.

First off, don't know the age of your daughter, but Dr. J. in CT would say that people don't start really making (full production?) the HNK1 cells measured by the CD57 test until somewhere around age 13-15. I think the CD57 is a good test as part of the picture, but I would not rely on it solely. There are just too many doctors who say it is inconsistent (even though there are others that find it quite useful, and for me it has tracked my situation quite consistently). An IGeneX western blot and ELISA are nice ones to get. It is always possible the LLMD would want something else, too, so sometimes it makes sense to get those done ASAP while waiting for an appointment or whatnot, but in some situations it can make sense to wait. Every doc will handle the situation a little differently. My sense is, on this board, so many of the mothers who have kids dx with lyme, when they test themselves, they find they have it too. It makes a lot of sense, the kids in many cases are getting it from their mother. Probably some are really without lyme symptoms, strong enough to truly keep the lyme bug at bay, but I think the majority do have symptoms they have been explaining away via other causes, and then finally fit the pieces together over the course of time. People go about that at their own pace.

Say it isn't so! Yes, the capitalism can be a bit disgusting when taken to the extreme. I work in the insurance industry, and I know first-hand that companies do influence legislation, I am sure this is the case in essentially every industry. I was thinking the other day, yes, very good to sell these new bulbs for $6 each rather than the old ones for $1 each. Very nice to have a law requiring it. All the better if they brake and people need more...

Seriously, light sensitivity comes in a number of forms for those with lyme. Some, such as myself, are sensitive to fluorescent lights, which blink on and off 60 times per second whether you notice it or not. The brilliant politicians of 2007 managed to pass an "Energy Independence and Security Act" and, as of 1/1/2012, it will be illegal to purchase incandescent bulbs, with limited exceptions. For anyone with sensitivities, I do believe the time to stock up is now or very soon. The last facility creating the incandescent bulbs shut down months ago, and stores are allocating less shelf space for them as they push the fluorescent bulbs. There may be great bargains coming in December, or they may be completely unavailable well before then. There are other options, yes, halogen and LED lights, for example. I don't do too well with the halogens either, and have had mixed results with the LED. The LED may in the end work for me, though they are more expensive, but they are also very bright and my wife does not tolerate them very well. Or, of course, christmas tree lights, which will fall in the limited exceptions, or perhaps walking around with a miner's helmet with bulb...

I will second the Buhner book, and also add the "Insights into Lyme Treatment" by Connie Strasheim. These books together will provide a great deal of information regarding treatments, and what you can do beyond abx, and what you can do to get started now. Also, the ILADS website has "guidelines for treatment", written by Dr. Burrascano, and a couple/few years old now, but there are a lot of excellent supplement recommendations there, even if he does recommend quantities beyond what I have found to be necessary. Things you can do to get started: - treat parasites/worms, don't try to test for them, everyone has them, everyone with lyme has this as an important issue to treat. Can be useful to have a skilled practitioner with this to use antihelminthics (sp?), but lots of herbal formulas as well can at least help. I took BioPure's Gamma Rizole for a couple months and then their Zeta Rizole, and this was very helpful. Avoiding onions, garlic, and mustard can also be helpful, as this is food for the worms. - biofilm--biofilm is a bunch of junk in the blood, heavy metals, minerals, and so on, that the bugs hide in; digestive enzymes like nattokinase, zactinase, lumbrokinase, a couple others you may read about, can help digest this - heavy metals detox, people do this in a lot of ways, binders like chlorella or cholestyramine (or many others) are important, far infrared sauna can help, I know think allergie-immun, a company in Germany has helped me the best with this, by reprogramming DNA to allow the body to recognize the heavy metals as something to remove. Radinex and SyDetox are also some good homeopathics for detox. A lot of approaches out there for this. - address diet and food allergies/sensitivities, if this is an issue (and you haven't already). here, the allergie-immun treatment is one way to go, NAET is another idea, but it wasn't permanent for me - oxygenation, such as by using an oxygen concentrator with about 97% concentration, can help get oxygen to areas where the bugs are, necessary to kill them, makes the abx better but also helpful by itself, particularly if chronic fatigue is involved - a variety of herbs, as you can read about from Buhner, there is also NutraMedix line, and Byron White line, really a lot of choices out there

Diagnosis is clinical, meaning it should be made by a doctor who is educated on lyme, based on symptoms while considering test results. That said, most people who test positive via IGeneX will have lyme. CDC uses certain criteria to track prevalence of the disease and imposed very strict criteria to be tracked, very likely to understate the prevalence of the disease. The CDC criteria (and therefore CDC results) are not anything to take seriously, or give even a second of consideration to. It is possible that not testing positive via CDC criteria will ultimately make it difficult to get insurance coverage for various treatments. But, plenty do get coverage without testing CDC positive.

I will second that soy as a protein source is not going to be the best for most people. I'm a vegan who keeps the soy consumption relatively low, so, it can be done. Not necessarily easy, and there, not sure where you're priority needs to be. It is possible to work so hard on diet that the effort involved becomes more than the result is worth, only you can make the call on that. For me, I use a small amount of hemp protein supplement and eat a large amounts of nuts/seeds. Of course, eggs can be a protein source as well, if you're not allergic or otherwise opposed (don't remember if you do eggs or not).

Absolutely it can be lyme without a known tick bite. I am pretty sure it is less than half of those diagnosed (perhaps 1/3?) have a known history of a tick bite. There are a variety of postulated methods of transmission other than ticks (such as mosquito bites), most of them not proven to have occurred, but one clear possibility is getting from mother in uterus.

i do think that is a good idea to get panels done...then you have an idea what to really go after..... but start with those that are typically listed here.....you can test till the cows come home...start with some of the more known triggers...and check vits d, b, ferritin, mag thyroid...things that are common and help support immune system if you have been doing abxs you should check liver enzymes when you go in...every 3-6 months....most children don't have problems as they process stuff so fast...but you can be sure and feel better about how you procede include igg subclasses and cd57(labcorp only) and i think you know the other ones. Regarding why LabCorp is recommended for CD57 ... First off, Quest doesn't have it. I was not aware that IGeneX did it, but won't dispute whether they might. Look, they specialize in lyme, it would make sense for them to have the test. There is at least one other company that does it, I don't remember the name. But, LabCorp used to be the only one, or, sort of, it was actually started by a specialty lab and then was sold to LabCorp. But, historically, LabCorp and their methods has been around the longest, they were initially the ones the lyme docs were using. So now, it is the LabCorp results that they can better put into context with other patients. It might be that a slightly different method would tend toward higher or lower results, so, sticking with LabCorp is a way to eliminate one reason for variation in the results.

While your name is familiar, I'll admit to not remember much about your situation. One missing piece to the puzzle--potentially--for you to consider, if you haven't already, is lyme disease. Lyme is exacerbated by mold, will cause autoimmunity (such as food sensitivities) and lowered immune function, and much need for detox of heavy metals. Since lyme disease will get at a person at many levels, supplements do help but are not as healing or problem-solving for those with lyme as they are for those with simpler problems. Of course, mold in and of itself, could cause all of this. If you're having the mold remediation done well, and get the air measured for success following the mold removal, perhaps you'll have your answer on that soon enough, in terms of is it just the mold or something more going on.

From reading and listening, I am starting to compile a list, titled "odd little clues that lyme may be involved". On it, is being someone that gets colds/sicknesses much more frequently than others or much less frequently than others. There is some theory surrounding this, that lyme really affects a person's Th1 and Th2 cells, and the balance of these affect response to illness. So, imbalance one direction would more frequently respond to illness exposure with cold, other imbalance the person would never respond (and be mistakenly thought to be very healthy).

In my comments of "or at least severe chronic infection", I was just referring to the short list of exceptions that some think can also depress the CD57. As far as I can remember, it is the ones you've listed here. Michael- Has your number gone up since treatment? Melinda My CD57 has tracked my treatment and progress fairly well. After a couple months of treatment it had gone up, and after discontinuing treatment several months ago, it even went up slightly more as my health and strength improved, but after a couple months of discontinued treatment, symptoms started increasing, started feeling worse again, and a re-test showed it was back down to around where I was pre-treatment. I started up again, and have had the test again recently after another couple months of treatment, but haven't actually seen those results yet (probably will in a couple of weeks). I have heard comments here and there, some people say the CD57 can be all over the place, daily, hourly, and so on. And maybe for some people that is the case. But for me, goodness, I think I've seen 5 results now, and they've all been remarkably consistent in relation to what has been going on with symptoms and treatment.

I used to take 200mg per day with breakfast, for many months, including much of my lyme treatment. It's a liquid version, supposedly better absorbed, so don't know what that would equate to in pill form. Just recently, I stopped taking it, my body doesn't want it right now, or any more, or whatever the reason. I don't think it's black and white, yes, good generally for the immune system, but also an antioxidant, and some abx work by being oxidants, so sometimes it can be counterproductive by destroying the abx before they get to do their job. Vitamin D is also supposedly good for immune system, and I've seen my body go through regular cycles of wanting some and wanting me to stay away, despite it measuring as low. You can also read that the vitamin D is something the lyme bugs make use of, and so it's a bit of a tension on what to do.

In my comments of "or at least severe chronic infection", I was just referring to the short list of exceptions that some think can also depress the CD57. As far as I can remember, it is the ones you've listed here.