SSS

I'm sorry, I couldn't really get all that, but I don't think it's all that extreme. I don't have anything of value here anymore. Sorry if I caused discomfort.

It is absolutely implied, no question, by some. I have seen several posts on the Lyme board about those of us still living in the world of "so-called 'pandas'" I don't have the time or desire to make confronting that notion on the Lyme board my crusade. But, I do think us PANDAS parents should be able to have a place to work our problems w/o the overt and covert insults about our kids' choices and treatments. And that post about multiple ivig's by SF mom was outrageous and completely outside the realm of this topic. ****Well, I felt like Momof3girls, that the Lyme testing, diagnosis, and treating Dr.s are ripped apart unfairly, too, I guess that is why I posted on here, that has not been our experience. I usually do stay over on the Lyme board now, but cross over sometimes, like you do, too? I care about the people here. Never have I identified like this before. And I will say, had it not been for Lyme being talked about and shared, we would never in a million years found out, very scary for me. Original OP, Dan, sending you PV's and good thoughts- I know how brutal it is to wait, and I hope it is very clear for you, and that it is negative.

We actually had the problem with strep and also Lyme. Both are possible, it happened to us. When we started Azith. a Scarlatina rash broke out- we had strep in the body coming out. But at 4 weeks on Azith., everything exploded again. Strep exposure, Lyme cycle, I don't know, no strep around that I knew of, still at treatment dose. We went through all the expensive pandas procedures. All I am saying is Lyme is real for us. Verified through testing and clinical dx. Our pandas treatments never held, so we looked at Lyme. We are seeing progress on the 2 antibiotics used for Lyme, and Lyme herbs. I absolutely KNOW pandas is a real standalone disease/disorder. I don't think anyone is implying it is not, but it gets percieved that way?

What are the definitive tests for pandas? Just a positive swab following an episode? What about the ones (us) who never had a positive swab? Our pandas diagnosis was only a clinical one, based on what I told the Dr., and a positive response to a trial of Azith. (which could have been based on other bacterial infections) Did the CamK, another test that doesn't tell me, yes, it is strep induced only. I don't want to get into drama, I really don't, but pandas is a clinical dx. How can it be outrageous that Lyme is sometimes diagnosed that way, too, when the tests don't come back saying 'positive'? And my personal Bartonella and Lyme PCR did come back black and white positive. But when that doesn't happen, you can get the dx from an expert, if it is deemed you fit. Jus like pandas

My youngest has this, Keratosis, on the back of the arms, fine bumps- my DH has it too, not me, no one else in the family. Our Ped. at the time said there is nothing you can do- but, I heard fish oil (omega's) help, started to supp her those, and the ones on her legs went away, never to return. Still some fine ones on the back of arms, and I also stopped supp'ing the fish oil, though. Not sure if it would completely eradicate it, but I did think it helped clear some. Just a thought on the KP, which is different than actual pimples. And of course, huge pimples with a horrid large white head on them, like boils, could be staph :-(

May I please ask if any knows this answer? The herbal tinctures: A-Bart, A-Bab, Bar-1, and so forth.... Since they are 'fighters' against infections, do they have to be given away from probiotics like antibiotics? (I am hoping for the answer no.) Thanks!

Maybe try writing down everything you are eating, and do a calorie count. I know others who had kids that were getting too thin, the Dr. made them do a food journal, and they found out there actually wasn't enough calories for the day. Ensure shakes? Sorry, just some thoughts- I don't anything about the low blood pressure, but it sounds worrisome :-(

Hi Karen, I had told my Dr. I had never been into high impact (high cardio) exercise, but I did walk the hills in the residential streets in my neightborhood, 30 minute walk. He thought that was perfect, and actually asked me to do it 2x a day (! No, I couldn't) but I do it every single morning. Althouth, it has started to rain, so just recently I lock myself in my master bed (leave DH out with the kids in the morning) I have some DVD's with some very light weight training- starting back I used no weights or just my 3 pound dumbells. I could only go 20-25 minutes. According to Burrascano MD guides: PROGRAM: 1. Aerobic exercises are NOT allowed, not even low impact variety, until the patient has recovered. 2. Conditioning: work to improve strength and reverse the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics and/or resistance training, using light resistance and many repetitions. This can be accomplished in exercise classes called "stretch and tone", or "body sculpture", or can be achieved in the gym with exercise machines or carefully with free weights (see cautions above). 3. Each session should last one hour. A gentle hour is preferable to a strenuous half-hour. If the patient is unable to continue for the whole hour, then decrease the intensity to allow him/her to do so. 4. Exercise no more often than every other day. The patient may need to start by exercising every 4th or 5th day initially, and as abilities improve, work out more often, but NEVER two days in a row. The nonexercise days should be spent resting. 5. This whole-body conditioning program is what is required to achieve wellness. A simple walking program will not work, and simply placing the patient on a treadmill or an exercise bike is not acceptable (except very briefly, as part of a warm-up), as aerobics can be damaging and must be avoided. Burrascano says walking is not okay, but it felt okay to me, even while on Levaquin and my legs had all kinds of twitches and weird muscle pains. It never left me exhausted, and I thought it helped keep everything circulated.

**Wanda, I am rather new to Lyme treatment myself, just started Doxy and Bactrim, after 6 weeks of Levaquin, I feel deep fatigue settle over me, too. And nausea. What are you doing for detox? My Dr. seems to be big on this, I am exercising 30 minutes every day (not high impact), doing a hot Epsom salt bath at night for 15-20 minutes to sweat out, taking binders to bind to junk and die off, and stuff to make sure my bowels are moving, probiotics, and a gentle drainage and a lymph node remedy. I know it's a lot, it is, but I believe it's all helping. I also still drink cup and a half of coffee every day (cut down), and I do take a cat nap on the couch after the 2 older kids have left for school.

It has taken me 3 days to refine dd's schedule, we have to take Amox. 3x a day, probiotics, herbs, binders, empty stomach, you all know the drill. I had to get our school involved, get the form signed, for them to give antibx at lunchtime. We have a new nurse this year, I was cranky from an OCD hair blowout before drop off, the nurse wanted to go over details about our 504 we put into place last year, for this year, for pandas, so far we haven't needed any of it. Anyway, dare I say it, I was a B. Over the last few days, I've realized they want to help, our Dr. wrote 'Lyme' for the dx portion of the form he sent back to the nurse, so I did acknowledge that in an email, that I sent to thank her for helping my daughter. It is what it is, welcome to 2011, right? And they are going to make sure dd gets her medicine after lunch. My dd has no issue/qualms about having to do this. Clothes and haircuts, ISSUES, but not this so far.

Hi, I'm sorry, I don't know any good websites like that- just wanted to add I have never heard taurine needs to be taken on an empty stomach- I used to supplement that one a lot- I just added it to the mix. I also have a very complicated supp/medication schedule with dd, with different binders, antibiotics, probiotics, herbs, questran powder, I have to give her something for her bowels to move-- I sat and brainstormed over the weekend, and the only way it will work is if I wake her at 4:50 a.m. (set my iphone) with a syringe full of supps and a drink chaser, and also at 9:00 p.m. with a capsule and water- Sounds crazy, but she did go right back to sleep both times last night when I did it- she took the stuff. I figure hey, I am spending all this money, we are really sick, this is how it is for the next year, months, or so. Not really much help, but I am having to wake my child for this all to work :-/

Thank you :-)

Hi. DD6 and I had some more testing done, more appointments, and it is definitive Lyme, Bartonella, Babesia, and MOLD. I can't even research or read about mold, so overwhelmed. Hoping it was our nasty new GE wash machine that developed black mold around it's front rubber ring- I kept it too long. Disposed and replaced a year ago. But sending away for kit to test our home, and dd is getting the HLA test done to see if we have this genetic issue. I also got in trouble yesterday. Was told I am too aggressive, kill, kill, push, push, and I am not in charge, that is, unless I want to crash my body. Humbling. I am so used to running the show. Guess God picked the right Dr. for me. Anyway, I start doxy and biaxin, dd amoxicillin and biaxin, a powder to help detox, more detox, can't fit all dd's supps and meds in, going to have to get the school to help. Lots of herbs, too. Overwhelmed, thanks for listening. S.

If I could offer you any piece of advice, it would be to please hang tight until your next appointment with a Lyme Dr. and to not buy ANYTHING for Lyme that has an >$50 price tag. You may deeply regret it, and find you really do need that money later on. And, for <$50. you can buy a gentle massage, epsom salts for baths, some good Lyme books: Cure Unknown The Lyme Disease Solution (and there are more) I have bartonella and Lyme. I can very much relate to the symptoms you are describing. I would try to get in with your Lyme Dr.'s asap, and start some treatment. And try and keep your life simple, if you can--- Sending you good thoughts---

It is a very EASY survey, too- Quick. Did mine yesterday. Thanks for posting the info.

Do you have any symptoms? When I really sat back, and read the symptom list, and was honest with myself: Wow. I *knew*, I deep down knew it, before my own testing came back. I had been living with the symptoms for quite a few years, calling it everything else in my life.

**I hear exactly what you are saying, it does make perfect sense to me. I think you are being led to this, because it is something you should be doing. You have worked very hard for quite awhile now getting the bacteria load down- and the KPU, which I have no experience in, but the releasing metals bit---is very concerning, I would think (would be for me, with a child who has positive testing, for mercury/heavy metal toxicity.) And it is scary to leave those in, the older they get. I am interested what your Dr. has to say- I think the every other weekend sounds like a great plan, and he will still be on antibiotics- the yeast issue and chelation, seems like it happens with kids who already have a past yeast issue (like us) and as the chelator/metals pass through the gut, it can stir yeast- just have to watch out for it. And the every other weekend is enough, but not 'FULL on', KWIM? Gives the body sufficient time to rest/get the minerals back in. I am anxious to get the mercury I know is in my dd, too- very. Scary as chelation is. I *know* it is a deep core issue for her. And I'm weary after spending 3 years doing every thing else for the immune system that is out there- I'm ready for core issues (the lyme and heavy metals) Sorry for my own rambling, but I do believe you are going in the right direction! xxoo S

I'm always hesitant to post about chelation, it can be a very strong opinion topic. Plus, I don't write scientifically, nor am I energenic enough to provide links. And if you ask me to back up my opinions, I won't be able to provide links, it comes for 2-3 years of obsessive reading on the topic, and experience of myself and others I've read/known. Had our Lyme tests come back negative, I was all set to spend this next year chelating dd6 with DMPS, to get her mercury levels down. Before we got to pandas in 1/11, we had just finished 5 weekends of chelation with DMSA only, dosed every 4 hours, 3 days on, 4 days off. Then she exploded. DMSA has the potential to lower neutrophils (which the body uses to fight infection.) Ours were low after testing after DMSA. Could have been Lyme related in hindsight, or the DMSA. I believe the DMSA (and DMPS) are 'true' chelators, with the pincher grasp/thiol, to penetrate and grab the mercury, through bio-films, and escort it out of the body (DMSA/DMPS through urine, ALA through stool) So, I believe we 'exploded' because we had never dealt with my dd's bacteria load- strep and/or Lyme. We were not on antibiotics, never really had been. And it got 'released'. I mean all he!! broke loose. Both our DAN! we had been working with, and our LLMD, suggest beating down the bacteria load before true chelation. When our DAN! signed our Igenex test, he said 'chelation is on hold, you have to deal with the Lyme first, if it is there.' So we are working on that now, chelation is later/last/we'll see. I will not use chlorella, cilantro, and the like. After Japan's radiation issue, don't trust the products, anyway, but I (personally) don't believe they hold on to heavy metals adequately. I do have charcoal, I do have bentonite clay, and as we do parasite cleanse, viral prescriptions, yeast, bacteria, and all this crud, these binders may/will come in handy for some relief. But when you are 'truly' chelating, binders are not used. The theory being if you are using DMSA/DMPS, these 'true' chelators, they are holding onto the mercury, not dropping it, not needing binders, in fact, could mess with the process. As for Lyme treatment, and using a cyst buster, and then heavy metals coming out of that bio-film, well...just the regular binders of bentonite (we have unique healing caps) charcoal, making sure those bowels are move, move, moving. If some mercury gets dropped, or moved, during Lyme treatment, I guess that is why you go back to actually chelate near/at the end of Lyme treatment. My .02 cents!

I am on Levaquin. It's a whammy of an antibiotic only used for Bartonella, not Lyme- I say it's a whammy, because it has a black box warning label on it (obviously, for adults only) but it can rupture tendons. It is important to take lots of magnesium 3-4 hours away from Levaquin, some say also Vitamin C, and I've read iodine, too (I am taking 1/2 tablet of iodoral.) Maybe she doesn't have Bartonella- but I can't see any Dr. giving her this antibiotic without some sort of indication- I had to have a positive test for Bart to get it. Oh, and I am NOT feeling great! No sir. I am on some herbals, too- detoxing, etc. Are you still feeling great on Doxy?

My LLMD painted a better picture for me with a few more tests: The CD57 (<60 is thought to be chronic Lyme, mine was 45) C4a Test (Hope I am saying this right; but indicates chronic infections causing inflammation- normal range <2,880 and mine was 19,440!) Also, although my Bartonella co-infection test came back sky high positive, my WB through Igenex for Lyme itself said 'negative' but very specific lyme only bands positive. My LLMD then had me send in a Lyme PCR blood test through Ingenex, I see what that 'says' next Friday, but pretty sure it came back YES seeing the Lyme in the blood (another method of testing for it besides antibodies WB.) Perhaps you can ask your husbands treating Doctors to do these tests. Lyme is pretty darn serious to dismiss. Oh, and I am not showing any improvement, either, with oral antibiotics and herbals I am doing, in fact, worse in body pain, but it takes awhile!

Well of course, I had to pull out my WB. On my IgG, band 58 and 41 are both positive (and 31 and 34 IND) IgM band 18, band 41, band 58, all positive, 31, 39, 83-93 IND. My Bartonella came back positive sky high, but my IgG/IgM's of bands 58 and 41 (and the 18) positive was called negative by Igenex, so turned in a Lyme blood PCR (results not in my hand) but I know in my gut that PCR is positive, because I got a bill from it from Igenex with a funny printout saying it is their legal job to report it, or something, and I feel it. I knew I had Lyme anyway, but, see what I'm saying? LOL. My very long winded way of saying thank you, I found this interesting!

I thought this article was incredible to see in the press, Fox News no doubt. I sent it off to some family members, who have listened to me talk about Aspergers (despite evalutions telling me no autism, no spectrum) then PANDAS, and finally, Lyme from the Mother (me.) All ties in.

Here is my sophisticated answer: sounds like a Lyme thing. Curious to hear what our good Dr. says, too. My intuition says it is not something serious that needs immediate attention... Can I ask you a personal question? PM if too much, or not, if I am being too nosy! It is your personal choice not to treat your Lyme/Bartonella with antibiotics? Are you on an extensive specific herbal protocol? I heard you mention you are doing a Bartonella challenge to your DS with A-Bart. Are you using that? I am on Levaquin, in additon to doing A-Bart and Bar-1 drops daily. The drops are HEAVY hitters to me. I direct herx. I am up to 5 drops of each per day, and holding, not going up anymore anytime soon. Thanks for sharing, if you care too--- we will be in the Dr.'s office next week, ourselves.

I'll just throw this out: Our old DAN! Dr., who was excellent with yeast and his prescriptions for it ;-) Once explained it to me like this; (Held up his hand) and said, let's say there are about 5 different strains of systemic yeast going on in the body. Diflucan, may get the first 2. Then you go to Ketoconazole, and that may get the other 2. (Same for Itraconazole.) So maybe what you are seeing, is this new prescription for Keto. going after yeast that hasn't been addressed before- the wanting to eat, anything, going for carbs, just wants to eat, is my sign in my daughter that her yeast is high (again.) Food for thought :-) P.S. I also wanted to add Keto. is known for going after parasites, too - I know this bit first hand, and have heard other experience it, too.

If you are looking for an objective guess, I'll give you one ;-) What stands out to me is all the new exercise- by the way, is it still hot there? It has been here, and it is a wipe out. But the new biking to school, running in PE (and they REALLY run my 13 year old son in his PE: Hard.) And starting up soccer again- might be too much? Perhaps he needs to go a little slower building up his muscles. Hope his calf is better soon--- ETA: Sorry, I see he is not exercising anymore, and still not feeling well... I'm not sure. I do know when my DS13 (healthy) started 8th grade, he was wiped out for the first 2 weeks- after being off all summer, sleeping in- the whole new, changing classes, social life, school work- he was pretty darn tired, took a good 2-3 weeks to get better with it all.