MichaelTampa

Yes, that form sure is a tough read, isn't it! I think the two western blots are the must-get ones. The lyme and various coinfection antibody ones seem like maybes to me. I did the antibody tests for borrelia, bartonella (symptoms like PANDAS), and rickettsia (I had recently read a years-old test result from a biofeedback machine that mentioned it was a problem), and now regret "wasting the money" because they were negative. My goodness, with the CD57 that low as an adult, if you have lyme symptoms, some would take that as evidence enough that you are struggling with at least borrelia. But, your lyme doc could easily want to see more, so the western blots are still good to do. I'd consider the antibodies for borrelia and any coinfection that your symptoms look like (for example, the bartonella and PANDAS symptom lists look quite similar), but it is just a tough call. The borrelia antibody test will likely not add anything to the picture. Regarding the coinfections, some docs, once they decide you have lyme, may devise treatment plan for borrelia and/or coinfections based on symptoms, so, another way to look at it is, why confirm bartonella if you have those symptoms, you'll get treated for it whether the test result is positive or negative (too many false negatives), so what value was the test? If anything, the coinfection tests might have value to find a coinfection that it doesn't look like you have, if you are struggling later with treatment. There are other ways to diagnose. My NAET practitioner got all the lyme and coinfection vials, and muscle tested them. The ones I tested as strong (not a problem), weak (a problem), really weak (major problem) for, all coincided with conclusions of my lyme doc and symptoms, so remember there are other ways to get hints as to what is going on. Of course, not all doctors will buy in, and it is important to do what your doctor needs so you get the right treatment. Hope all this rambling somehow helped rather than getting you more confused. Michael

I'm not familiar with that lab or that format for results. But, it looks like they are saying the western blot results show 41 for your son and 41, 54, and 58 for your daughter. Bands 41 and 58 are in the category of diagnostic of lyme, neither are thought to be in the category of highly specific for lyme (such as band 39 is). Some like to see more than 1 or 2 bands before diagnosing lyme, whereas other more aggressive doctors may diagnose with just band 41 if symptoms look so much like lyme, as opposed to other conditions thought to trigger band 41. It is much trickier because you and your doctor may want to figure out if the symptoms are all explanable by PANDAS or if there are lyme symptoms. If you are lucky, you can find a lyme specialist who is familiar with PANDAS. You are in the same conundrum as many who opt for lyme testing, which is that it leaves so many people wondering what they have really learned. Michael

Yes, my CamK was 186--quite high. Those ASO and Anti-DNase-B and other things you get on that page were all in the normal range. I did get quite a bit of improvement with the lyme regimen. I am currently off the lyme drugs and continuing to see improvements in neurological symptoms (perhaps from detox). Coming off the abx, the one downside has been increased phlegm and coughing, and this makes me think I really am still unable to make antibodies for things like strep and mycoplasma pneumonia. The strep vaccine testing I did more or less demonstrated that fairly well. Michael

Some other key differences between lyme and PANDAS treatments: The serious lyme doctors frequently use IV abx, it can get into the brain better. Also, since lyme can avoid abx by turning into cysts, they use cyst-busters and other drugs to tackle the other forms of lyme, drugs like flagyl or tindamax, and alinia. Fixit--You're lyme western blot results are basically the same as mine, the ones that my lyme doctor looked at, along with my symptoms, and said I had lyme (positive band 41; IND band 39). While the band 41 is least specific for lyme (band 41 positive sometimes means something else), the band 39 is the most specific. If you're positive for band 39, it is going to be presumed lyme in the absence of extremely strong evidence to the contrary. If the person has lyme symptoms, then that's it. The "IND" is frequently looked at as a positive, and that's how my lyme doc looked at it. Another approach is test again, hopefully after a little treatment and the person is a little stronger, and you'll likely get a true positive. It is true, there are many lyme doctors who treat band 41 positive all by itself as lyme, as long as the symptoms correlate with lyme. They will point out that symptoms can distinguish between lyme and the other things that cause band 41 positive, like H.Pylori (the one that causes ulcers). They defend this approach at this point simply with their experience. They have treated several band-41-only patients as if they had lyme, and most of them get better. They feel they can't prove it was lyme, but their goal is to get the patient better anyway, not to prove what was making the patient ill.

Justine, Not a kid, but an adult with lyme&PANDAS, just wanted to chime in with my experience. I used to take about 70 different supplement, every day, some multiple times per day. Each one was measured with "muscle testing" (applied kinesiology) and my body said it was helpful. Managing that kind of inventory was quite a challenge, and I did run out sometimes, many times I would notice within a day or two how valuable it was for me. Others, I never noticed anything. When I got into really trying to reduce pills and costs, I tested priorities and ordered them (again, muscle testing) and then dropped a few at the really bottom. I started buying a lot more from iHerb and vitacost, as opposed to from my doctors, different brands, but I found replacements that were a lot cheaper. I really don't believe any have helped with an overall cure, but absolutely they helped manage symptoms. With acid reflux and bad digestion, you bet vitamins and minerals helped (not absorbed from food) and something to fix lining of esophagus helped. With neurological infection/inflamation, you bet some of the supplements targeted at that helped. If you have access to muscle testing, would strongly encourage you to use that. For some people, it is easy to learn to do that testing yourself. It took me a couple/few years to learn it well enough to trust it, but some people learn it well in a matter of minutes with a good teacher. The great part I have just experienced by sticking with them and testing them, is to see you test for less and less when you get real healing, I am down now to about 10 supplements (6 of them probiotics), which is gratifying to see, but also confirmation of real healing which can be useful. Michael

can you explain...is this sort of like the ivig of drops? i thought it was your own dna...and then i didn't get what happens from there? I think he was saying that if he has IVIG he will have donor antibodies in his blood... which is different from his own DNA...so the test my not be valid any longer Yes, that is what I meant, Kim, the Allergie-Immun drops are meant for my DNA as it was when I send each saliva sample, but if I get IVIG in the meantime, then it seems to me that messes with what my DNA is. The Allergie-Immun drops are not actually DNA (mine or otherwise), they contain energetic information designed to help my DNA.

kim--The allergie-immun drops are supposed to be taken for 2 weeks, then I resent saliva sample and wait a couple-few weeks for the next set, and it goes on like that until the DNA looks fixed to them. Both the IVabx and IVIG approvals are through the end of August. I feel like that give me a little time to mull over if/when I want to get back to abx. The IVIG is pretty low-dose, it's how my lyme doc does it, 20gm first time as a test, and then 40gm every 3 weeks. With the IVIG, wondering if I want to expose myself with low-dose blood once or twice only to have it not be approved after that, all the while knowing it will make it more difficult for the allergie-immun stuff to work (introducing foreign DNA into the system). Thanks for your well-wishes. For now I'm enjoying having started my drops today! Michael

fuel4all--If you want to get going quicker, you really do not need to order a test kit. You can prepare your sample by yourself as follows. Put a couple drops of saliva on toilet paper or paper towel or tissue, about a 2 inch by 2 inch square size. I used Publix recycled brand tp (no perfumes/colors), but don't know if that's important. Then, wrap that in aluminum foil by just folding it over the edges to keep it wrapped but nice and thin for the envelope. Put that in an envelope, along with a piece of paper where you have written/printed the person's name, age, gender, a brief symptom list. Assuming you're writing in english, keep in mind that they are not english experts, so keep the symptom list as easy to understand as possible. Also, in there tell them whether you've ordered just the initial report or the therapy and that you've paid so much via paypal on whatever date you paid. It is 94 or 96 or 98 cents airmail to Germany, your post office will know. I did it this way, just got my drops today, 16 days after I mailed it away, and this is roughly average turnaround time, but it can vary quite a bit. They do not send out any receipt/confirmation unless something comes up that they need from you before they can proceed. Fixit--Just got a call today that my IV abx and IVIG are now approved through August. My goodness, quite a day to get the drops and these approvals. Not really sure if I am going to go ahead with the drugs, here, trying to heal the gut, and kind of thinking this allergie-immun therapy is something I do not want to do in combination with IVIG. The drops are made for my DNA, so introducing DNA of 1000 others ... hmm, perhaps if I use IVIG, it would be by finishing the allergie-immun drops already made, then IVIG, then let that settle, then order next round of drops, at least so the drops are made for the way my body is when I'm taking them. Michael

Pmom--Yes, I agree, that would be quite a miracle, and maybe they can't quite do that. They talk about helping with chronic conditions and allergies and autoimmunity, and while this is wonderful for people with these problems, there are other problems that could be greatly helped if they could truly find all errors in DNA and fix them all. All those disorders where it is genetic and the bad gene has been found, if they could do it, no doubt they or someone would be. We can't be there yet, maybe someday. Maybe they can fix SOME DNA errors, I wish I understood it better what they are doing. They point out in their literature, the world of physics really has advanced quite a bit in the last 100 years, and medical diagnostic techniques, generally, have not kept up and used this information, whereas they are using it. Some of this is going to be beyond the understanding of many people, myself included, who are not experts in quantum physics and the like. kimballot--Yes, I was referring to the pneumovax, I failed quite miserably, I had the levels rise in 3 or 4 of the 14 or 17 categories (not quite remembering the details), and the rise I had in the 3 or 4 places it did rise, it was a rise from the level of basically nothing to still extremely little, it showed a clear problem, supposedly demonstrated need for IVIG, although my insurance company did not look at it that way. The discussion they print with the test results say that normal/healthy would be at least doubling of the values in at least 70% of the groups. Certainly did not get 70%, and my lyme doc said while the 3-4 did double, they were still just too low, so he was even counting those groups as failing as well. They denied IVIG and also cut off the IV abx after 8 weeks, and while my neurological symptoms 10 days later are still not going backwards, I am having phlegm and coughing at an increasing rate with each day, the pneumonia may well be still going strong. Maybe I'll get IVIG one day, but it looks for now my hope is in this Allergie-Immun place.

I do not have any known allergies where I have immediate reactions of a really serious nature, but I have many allergies/sensitivities to foods and chemicals and perfumes and pollens and so on. The pollens cause cold-like symptoms and the foods cause digestive issues like acid reflux and diarrhea. The perfumes cause cold-like symptoms as well as the same neurological issues that wireless devices and fluorescent lights cause (no idea if those are really allergies or not). I have had the foods and pollens successfully treated with NAET (acupuncture technique to remove allergies), NAET is supposed to be permanent, but they do keep coming back. From your description, your ds has pollen allergies a lot worse than mine. I also "failed" the strep vaccine test, in that I took the vaccine and it did not substantially increase my antibodies. I really believe I have been walking around with pneumonia (strep, mycoplasma, both?) for decades. This problem may be allergy or autoimmune or none of the above, but it may relate to not properly recognizing the bacteria as something to fight against, and I expect the allergie-immun drops can help with that too. Yes, indeed, how do they figure out what the "errors" are in the DNA? I have no idea. Looking at my first report here, it is talking a lot about energy blockages (body systems, glands, psychological from inherited and experienced traumas, spinal vertebrae) and food/chemical/metal allergies. Maybe they are really looking at this and inferring what the DNA errors are? Doesn't make sense to me how that could be it, but don't know what they're doing, a little bit of a mystery. The report says the 450 euro covers 1, 2, or, if needed, 3 bottles of drops, that this is all people need. On the lyme message board, people are reporting going quite a bit longer than 3 bottles. I also see a post that they told someone on the message board that americans are needing much longer, are at least twice as toxic as the europeans, so that may be the standard language for the report, not reflecting americans. In an e-mail, as I asked, they did say the 450 euros covers the treatment, however many bottles of drops it takes, and discussion on the message board seems to confirm that is how they do it. The report does also ask for 10 euro each time they have to send a new bottle of drops for you, to cover postage and other related expenses. Yes, some of the popular binders discussed are activated charcoal, bentonite clay, apple or grapefruit pectin, chlorella. There are more I am not remembering. The activated charcoal and bentonite clay are used a bit more cautiously than the pectin and chlorella. Apparently, the clay has aluminum and also can be tough on those dealing with leaky gut, which is almost everyone using the treatment (having food and chemicals leak through your gut into your bloodstream is thought to cause the allergies). I think the caution on activated charcoal is that it soaks up so much good stuff too.

Just wanted to share about an allergy treatment I am pursuing. It is from a company in Germany, a link to the English portion of their website is below. http://allergie-immun.de/Englisch/ It involves taking drops that have been energized to provide information to correct your DNA. The process involves sending them a saliva sample, they look for errors, produce and send you the drops, you take the drops for a couple weeks, then send them another saliva sample, and the process repeats until no more errors in DNA are found. It is meant as good treatment for those with autoimmune issues, allergy issues, and digestive issues (frequently from poor function of immune system and/or food allergies/sensitivities). Since transport of saliva to them and then drops to you can take a couple weeks or so, it seems to be about one set of drops roughly per month. The cost, if I remember, is 450 euros, a bit of a cost, but it's not per bottle of drops, it's for the therapy to completion, which can take a year or more, depending on how much DNA needs repairing. I found out about this treatment on the lymenet message board, those with lyme who have chosen to pursue this therapy seem to report benefiting from it fairly well. While many are adults, some are also treating their children as well. Since there is similarity with lyme and PANDAS, and some people (like myself) appear to have both, I thought it would be worth a mention. I have read that lyme, when it invades a person, will actually analyze your DNA and your immune system, and make changes to it's own DNA and to your DNA to make it impossible for your body to kill it. So you could see why someone with lyme might need some DNA correction. But, there is another thread on this message board here that I have been reading, someone posted an article talking about how DNA errors may be part of the issue for other problems, including problems like PANDAS. I just today got message that they shipped my first set of drops today, so I can't report personal experience yet, I haven't started treatment yet, but certainly will as time goes on. Lymenet as an enormous thread just on Allergie-Immun, 35 pages now, and a page on their message board is many times longer than a page on our message board here. I have not read it all, but have read enough to get a flavor. Many are discussing that the DNA correction allows the body to properly recognize toxic/heavy metals as problems and finally start moving them out of the body, and these metals can be part of the autoimmune problems. They also talk about the need to take binders to help truly get them out of the body, once they get moving around. This certainly speaks to me in terms of feeling like it will address my issues, but it also makes me think of those in the TS/PANDAS/Autism community. Anyway, just wanted to share, for those still struggling for long-term answers, something to consider. Michael

Buster, Could you please clarify, those concerns you mentioned regarding potential liver and kidney damage for long-term use, are those concerns specifically related to biaxin (clarithromycin), or to all antibiotics? Michael

ELISA and Western Blot are different, so maybe Brandy she got the Igenex western blot. I got that also, and it was covered about 70% by Aetna, guess it depends on what your insurance is. ELISA for lyme provides many false negatives, so, yes, it is more-or-less worthless.

how about that!

Okay, I'll add one: I have not failed. I've just found 10,000 ways that won't work. Thomas Edison

Still working on insurance approval, but my lyme doctor is recommending 20 grams of IVIG for the first time (in case of bad reaction), then 40 grams thereafter, every 2-3 weeks. He says he never goes over 40 grams. I weigh 130 pounds, which is 60 kilograms, so the initial dose is 1/3 of a gram per kg, then later doses would be 2/3 of a gram per kg. I am sure I have lyme, but also looks like I have PANDAS as well. My memory is the lower doses IVIG have not worked as well as the higher doses, as far as people on this board. Does that sound right? Have the lower doses been bad, or just not as good? Anyone with lyme&PANDAS with IVIG experience to share? I have been treating with lyme protocol for 7 weeks, and getting some improvement, slow and steady mostly. Michael [just edited to say I weight 60 kilograms, not 60 grams]

Thank you! So you basically just have to avoid packaged "vegan" foods like seitan? (I'm not sure if I'm spelling that right) Well, if you're going to go seriously/strictly gluten free, bear in mind, gluten is probably hidden in lots of packaged foods, whether made for vegans or not, so the solution there is just avoiding packaged foods or reading labels really carefully. Not sure how gluten-free people handle restaurants, how much is hidden there. I've been strictly gluten-free at home, and avoided obvious gluten sources in restaurants, but haven't worried about little bits in restaurants.

I've been a vegan for years, and have avoided gluten and yeast and corn for a number of months. I absolutely can be done. I can't say that the gluten-free has done anything noticeable for me, but I keep at it. There are a few grains like quinoa and millet and rice without gluten. Of course there are beans and nuts/seeds. I personally eat a good bit of nuts/seeds, but have started eating more grains lately. I don't have a lot of time right now, but if still interested, ask again this weekend when I'll have a time to really spend on your question. Michael

I had IGeneX tests done, insurance did pay for a good portion of it, but not all of it. I went to a third-party place that does blood draws and ships to wherever (normally labcorp or quest), and it went smoothly.

I had not heard of the C3D test either. Just did a little reading, looks like C3D and C4D can be used as diagnosis for acute lyme disease. (Some places I read talked about C3A and C4A in the same light, probably the same idea, but different names...) CD57 is good for chronic. Nice there are both tests. Michael

I have used it for months, it is a good one for me. It helps with heavy metal detox and immune function. I don't have any links or anything like that. It is one of the amino acids needed for glutathione which is needed for immune function and detox, so that is probably a big part of why it is so good. Glutathione is one of those things that is difficult to get via supplement, because, if taken orally, the body just destroys it during the digestive process. For a number of months, I took 1200 mg per day, 600mg at breakfast and 600mg at lunch. Now, I only take the 600mg at breakfast. I weight 130 pounds. Michael

Pretty exciting to see the move up, looking better and better!

Melanie, Oh my, Melanie, I am guessing you have never taken this stuff. When I would take it, it would be 2-4 drops at a time, I would mix it in about 1/2 cup to 1 cup water, swirl it around just before I drank it to keep it as mixed as possible, and it would just burn like crazy on the throat and all the way down. Yikes! Maybe cooking it would make it burn less, and perhaps less effective too, who knows. But, oh my, it is very unpleasant to take. Michael

Late getting in on the conversation here, but the Cunningham study did show the CamK differentiates PANDAS kids at least somewhat from OCD kids and kids with tics (TS?) and ADHD kids. But, it could be a more generic marker for infection related problems, or autoimmunity problems. It could be that PITANDS patients generally have high CamK too, and same thing with lyme patients. That's why I'll agree, getting the test FDA approved would be great, but, for it to be really diagnostic of PANDAS, some research on those with other infection-related autoimmune-related problems would be in order. It would be a shame for someone to consider the test diagnostic of a strep autoimmunity when it was some other infection they had. Michael

I have found the big-name pharmacies to be not very good or careful at getting you the real ingredients. I have better luck with one of the compounding pharmacies, even when the medicine is not compounded, they are more likely to take the time and be careful and get the information you need on ingredients, and even get the brand you want. Michael