MichaelTampa

I'd describe it as a mild licorice that is just slightly sweet. Just like your brand, it is a powder that you mix in water or whatever. It's one of the few supplements I take where it is not just tolerable, I really enjoy the flavor. So, gosh, I would guess most could at least tolerate it.

sounds like a cool idea

If you mean L-Glutamine, I use Xymogen brand, the product is called GlutAloeMine. It is meant for repairing GI tissues--it has L-Glutamine, aloe, arabinogalactin, and deglycerized licorice root. I find the taste really nice. Xymogen is something you won't find in health food stores, it is generally distributed through "alternative" health care providers, like acupuncturists, although you could probably purchase through internet as well.

My vitD3 levels were very low also, about 20, supplementation has helped just a little bit. I had lyme and maybe PANDAS, and all the vitamin D seems to go into some black whole, it may just take a while. I am a vegan, have used Spectrum flax oil with DHA added, and also, for the precursor to EPA, a product called Echiomega, made by Igennus in the UK. Hemp oil also has the precursor to EPA, but not in quantities as strong as the very potent Echiomaga. The flax/DHA oil didn't taste great. The Echiomega is a capsule that could be swallowed, I can't do that, so I would bite it and swallow the oil that comes out of the rubbery capsule. Michael

You mean the one on facebook? Looking forward to seeing.

Did anyone go to last month's 4th Tuesday PANDAS meeting in Orlando? If you did, curious how it went / what it was like. I am thinking about going this month. Michael

Regarding IGeneX testing, there have been threads in the past where this has been discussed, there is no clear-cut answer. For most people, where a few hundred dollars is a noticeable amount of money, I would recommend going basic with western blot--igg and igm, and that's it. The lyme doc can order more if that makes sense at the time. If you're really really desparate for quick resolution, things are horrible, and you can afford more, like the antibodies for borrelia and coinfections, sure, okay, but I would not recommend in most circumstances just because I think the western blot is the best chance to confirm a real problem with lyme. I think there will be too many false negatives with the other tests, making them more of a "waste of money" in most cases. Yes, you will need to find someone to draw the blood for IGeneX testing. Some doctor's offices do this, and there are independant labs that do this to. Some people have been able to get Quest or LabCorp to do this for them, others have not. I had it done at Granite Labs for a $15 lab draw fee. Understand you're talking about kids, but, for anyone else reading this, for adults, I'd recommend the LabCorp CD57 "HNK1" test. (Quest doesn't do it.) With insurance, this is likely to cost about $10 so the cost-benefit on this one is a pretty easy decision for most circumstances. Michael

From the Tampa area, I really think the only choice is Dr. Michael Cichon. He is the one I went to, and things have gone quite well so far.

More reasons to forget the rash: - they may not last that long, what if they appear on an area of the body that you don't look at so much or ever, and it is gone in 24 hours - for all the kids here, if they are born with lyme, when could there be a rash I have heard some do eventually see rashes during treatment, and it is a sign that they are finally getting somewhere. Myself, I never saw one, at least that I remember.

My Aetna insurance covered, I think, something like 50% of the cost of the tests I did. Not nearly as much as they cover the standard labcorp and quest tests, but still, it helped.

I want to echo lyme mom's thought about anyone with PANDAS symptoms getting an IGenex western blot AND evaluated by a lyme doctor. A negative on IGenex western blot is not a certainty you are clear from lyme, which is why it is great to give a real doctor a chance to look at the situation. You can have both PANDAS and lyme. Even when you see the clear correlation to strep in the symptoms, so you feel confident you have PANDAS. There is too much correlation, lyme could still be around, even behind it all, and it just gets worse if not treated. It can lead to a disability-financial-health crisis that can be very difficult to recover from. As someone who struggled health-wise and social-wise, and finally got treated at age 42, I just can't stress enough, giving it a look can save so many years of torture. To answer the survey-related question, my IGenex western blot result was positive band 41 (igg and igm) and indeterminate band 39 (igg and igm). Band By the way, for any adults out there, LabCorp's CD57 ("HNK1") test is another worthwhile test. It is generally covered by insurance, and I think for most with insurance, they'll likely pay $5-$10 or maybe $15 for it, when all is said and done. I have heard it is not useful for children, don't know why, since I'm an adult I didn't study that point too hard. Michael

I have Aetna. I had 1 subclass deficiency, and another subclass borderline, and failed the pneumovax challenge (didn't produce substantial antibodies in response to strep pneumonia vaccine). IVIG was initially disapproved, but after my doctor spoke with Aetna's doctor, it was approved. I also have lyme, not sure what role that played in approval, my guess was it was the subclass along with pneumovax failure.

Another way to do it is go to an independent blood drawing place that gets business just doing that and sends it off to other labs for processing, of course most of it gets sent to LabCorp and Quest. I went to Granite, not sure how local or national it is. They have a contract with Quest, meaning most is sent to Quest, but they charged me a $15 fee to draw it and then happily sent it to IGeneX for me.

I ran across a good discussion on these other conditions once. I'll try to find it tonight. Not sure where it was, perhaps in the "Cure Unknown" book. I know that H.Pylori, the thing that causes ulcers, is one of the other conditions, that's the only one I remember.

Yeah, looks like you've given a lot of things a fair shot, glad you're working with binders too, that can at least help get it out, even if the symptoms are still brutal. Hopefully you can make it through. I have heard it sometimes does take a while to get rid of those heavy metals. As far as the fluorescent and wireless sensitivities, they are still a problem, but much less. I have stopped the lyme treatment for now after two months, it was very good for me, and am still showing some signs of progress even after stopping the abx. Monitoring with blood tests pretty carefully and regularly to make sure we know which direction things are moving. I am taking Allergie-Immun treatments, drops with information to fix DNA, for those with allergies, a treatment from Germany (there is a thread on the PANDAS board if you're interested in more on that). Feel they are helping with heavy metal release at least, and taking a binder to help that as well. Besides that, really struggling with severe GI problems, they started from Augmentin back in March and have just gotten worse and worse, we keep trying things to kill whatever is out of control, nothing has worked yet.

Faith, Fluconazole is a good antifungal in the "systemic" category, meaning it gets absorbed into the bloodstream and goes all over the body to treat the the fungus wherever it may be. Because it does get absorbed, it is work for the liver, and people doctors like to monitor liver enzymes if given over an extended period of time (months). Nystatin is a great antifungal that does not get absorbed, so safer, but only works in the digestive tract, because it doesn't end up anywhere else. I wasn't so much wondering why not nystatin instead of fluconazole, but more wondering why not both. Yeast/fungus sure do love the digestive tract. Have been wondering how things were going for you lately, wishing you well, haven't seen you posting so much recently, wondering if I missed something as I was kind of gone from the board for a couple months. Have you had a really good work-up for lyme by someone specializing in that? I think you live in one of the areas where there is a lot of that. The enzymes for biofilm can be very helpful. Not just yeast and bacteria, but heavy metals like mercury and also lyme bugs too. Lots of stuff in there, perhaps with releasing heavy metals from the biofilm, you may want to consider some kind of binder to help eliminate them rather than recirculating them. Michael

airial--That's funny, the plans I already have for tonight is, I'm a member of a vegetarian dinner group that meets monthly for dinner ... on ... the fourth Tuesday of every month! Well, I don't attend all of them, so, still leaves room to attend the Orlando meetings sometimes. Stephanie--Wasn't referring to chance of infecting others, more, just, won't be able to provide much experience with what it's like to deal with a PANDAS child. But, still interested in meeting others. But what about the infecting others. I don't think lyme is a concern, but what about strep? Is it normally safe enough with no strep symptoms (cough, sneezing, stuffy nose, etc, etc, or whatever they are)? I'll PM you my email address. Michael

Faith, I know my doctor has made the same remarks as yours about the candida testing. He has tested me, was always negative, but I definitely had it really bad, and probably still have it some. Maybe there's some test that's better than what some doctors know about? A little surprised not using nystatin also, that's supposed to be very good for getting the fungus in the digestive system. Don't know if it's die-off, perhaps it is, but, the fungus treatments really can take months sometimes if it's bad. After diet is cleaned up for a week or so, maybe you could again try a break for a day or two to see how that changes things, to help see if it really is die-off? Michael

I will not be attending either of these. While I am open and a little interested to meet people, I just found out about tomorrow's when I read your post, and already have plans for tomorrow night. I have known about the Vero Beach one, but that is a bit far for me, coming from Tampa. I'm not the typical case with PANDAS kids, I'm the sick one here, with definite lyme and possible PANDAS, that maybe adds to the reluctance. Still, though, curious to meet others, but if it's too far, I have to pass. Hoping they are great meetups! Michael

I have taken deglycerized licorice root, but as part of a mixture of glutamine, arabinogalactin, and aloe, as a digestive tract helper, in my case, something to help rebuild esophagus lining. Haven't heard of its use for adrenal support. For adrenal support, I have taken rhodiola and cordyceps. Michael

Just wonderful!!! Michael

Right, well, not exactly looking for his opinion on the drops. More, looking for his opinion on if I need to do any other kind of lyme treatment (such as IVIG) that is going to make me want to hold off on the drops for a while rather than mix the two things together. I would guess IVIG would be the worst combination, trying to fix your DNA with drops and then at the same time adding in DNA from blood of 1000 other people...

Yes, agree absolutely.

Yes, I just finished my first set of drops a couple/few days ago. I have had a lot of pimples on my head and some increased eye-blinking fits, quite a lot of them. My neurological symptoms/sensitivities have generally been rocky, some good days, some bad days, but generally trending in the good direction of less and less problems. I continue to have very terrible digestion and diarrhea every day. I am not really on any other treatments, except the cholestyramine I am taking as a binder, really to support this treatment. I assume from the pimples and eye-blinking that the drops are helping start elimination of heavy metals. Neurological symptoms/sensitivities had been trending downward before I started taking the drops, so I don't know how much credit the drops get for that. I am holding off for a few days on sending away for the second set of drops, because I have an appointment with my lyme doctor tomorrow, and don't know what direction things will head as a result of that. Hopefully we will see it as okay to continue with this and no need for anything else. Michael

It is difficult to sort through the, is it PANDAS, or is it lyme question. It really can be both. Lyme will go in there an reprogram your DNA to make you not as able to make correct antibodies, and in that sense it really can cause PANDAS. Of course PANDAS can make you weak and more susceptible to lyme and vice versa as well. I think the things that really distinguish PANDAS and lyme are: - CD57 test results very low is lyme - severe neuropsych symptoms every time exposed to someone with strep infection is PANDAS FYI, my CamKinase was 180-something, and I had lyme at the time, so the CamKinase does not mean it there is not lyme involved. When I came off abx for lyme, one of the first things I noticed was increased sneezing and phlegm and all that, and I really think that's a big clue that I have more than just lyme, that I still am unable to make antibodies to strep or myco or whatever. Whether it causes neuropsych symptoms for me, honestly not sure at this point. Michael