GraceUnderPressure

I am not sure why the PANDAS network has that, but it could be related to a NYT article in 2005 that smeared Igenex & lead to an investigation by a federal inspector - who cleared them of the allegations. Here are a couple of links that give a synopsis of what happened - http://members.iconn.net/~marlae/lyme/headlinestory02.htm http://members.iconn.net/~marlae/lyme/articles/2005/Igenex%20passes%20two%20inspections.htm There are still a number of people out there posting about the smear as if it were fact and unaware (to give them the benefit of the doubt) that Igenex was exonerated so it's quite possible that's it ended up being picked up from one of those sites by the PANDAS network. After doing a little research & then talking to our PANDAS dr, we ended up doing the full Lyme panel (around $400) because though the Western Blot is considered the most reliable at this point, relatively speaking, we were also worried about ambiguous results & wanted to get as definitive a positive or negative as is available at this point. I will also second (or I guess third?) the recommendation to read "Cure Unknown" for the details. I actually wasn't much inclined to read it, but our library turned out to have it so I went ahead & borrowed it. I ended up not being able to put it down & stayed up till 3 in the morning reading! (BTW, interesting WaPo article that turned up on author Amy Tan relating to the Lyme controversy in case anyone's interested - http://www.igenex.com/tickedoff.htm)

pandas16, while I do appreciate your apology, please understand that I pursued this because this is not the first time you have expressed yourself in a way that generated consternation. I realize that you are young; I hoped that I could explain it in a way that would allow you to appreciate what is triggering it so that we could avoid future repetitions. Again, I would recommend reading "Cure Unknown" by Pamela Weintraub - it will not only supply you with a generous list of references , but also supply much of their historical/political context. Don't worry, I feel that I have explained my perspective quite fully enough & have no intention of pursuing it with you any farther. Worried Dad, I am actually entirely of your mind on this. I wish we could move on. I have not really spoken on this topic before, but I am totally frustrated that it keeps coming up over & over again - and I felt that way before my son tested positive for Lyme. Someone who is new to these forums & unaware of the danger of checking their brain at the door of ANY doctor's office may be detrimentally confused by this kind of thing. And yes, I do also realize that this problem of making such unsupported definitive statements comes from both sides of the divide. This should not be Lyme against PANDAS & vice-versa. None of these doctors - no matter how awesome - is infallible and none of the research is either. All have their limitations - as doctors & researchers will be the first to tell you. JAG10's "more likely and less likely" is a better way of describing these things. My apologies to all who are annoyed by my annoyance! ~Grace

No, you did not express it in those words. And I don't doubt the sincerity of your opinion or your personal experience - with PANDAS. However, it was made very clear that you hold a large amount of skepticism in regards to Lyme - just not how far it extends. That's fine - you're certainly as welcome to your opinion as anyone. It's the certainty with which you express it that is frustrating. Even the majority of experts on the subject of Lyme do not speak with the certainty that you do - and they have years of study compared to your ... glancing interest? Have you ever been bit by a tick or tested for Lyme? The only Lyme experience you mention is having looked into the subject for a brief time. The OP stated that her child was only just recently bitten so it's not like she has had the opportunity to wait & see if the PANDAS treatment is going to eventually fail. But I would think we would all recognize that as an opportunity that her child can't afford. From what little I have been able to learn of Lyme so far these last few months, Lyme treatment is *more* aggressive than PANDAS not less - it appears that Lyme treatment is not generally likely to allow strep to flourish nor encourage auto-immunity even if it did miss that mark; whereas, several of the PANDAS treatments can allow Lyme to do so. Multiple co-infections means that a person can be a PANDAS *and* a PITAND. It's not like strep makes you impervious to borrelia. In fact, it appears to be very much the opposite. Go ahead & express your opinion & experience - just be fair & respectful enough to be honest about their limitations. Please treat the Lyme parents with the same respect you would like to be granted by PANDAS skeptics. Don't take it so personally? I have no choice - Lyme has claimed my son & I'm fighting for his life. Your experience with PANDAS surely has taught you that it doesn't get much more personal? And as much as I dislike conflict, if there is anything that I can do to spare anyone else from going thru this nightmare, I will do so. I would think those affected by PANDAS would be the first to empathize.

pandas16, I don't believe that it's about having offended anyone - frustrated is probably more accurate. Consider how you would feel if someone stated that they had researched PANDAS for a day or a week or a month and had concluded that it looked pretty uncertain/ unlikely/ useless and that they did not feel people should waste their time or money when the neuro-psych research is far more extensive & reliable, & there are perfectly good psych meds that could, & therefore should, be tried first as that is more of a sure thing. I'm not trying to tell you to go away. I hope you don't leave in a fit of pique. You sound pretty bright & that's a gift; however, the more knowledge a person acquires, the more they realize how little any one of us can really know. That is why humility is the hallmark of a true intellectual. Please stay. We are very open to the knowledge & experiences that you have to share with us. You might even discover that some of us have worthwhile info to share as well. But understand that most of us come to this forum to get relief from the people who treat us like dupes - or worse. I'm just asking you to give us the same respect that you want others to give you - recognize the extreme fallibility of your opinion when you express it just as you would want PANDAS scoffers to do. ~Grace

I was up late & tired when I posted last night, & realize that I really failed to make my point as I had intended. I agree with Bill's preference for MCIDS (multiple chronic infectious disease syndrome); I hope the new name is something all encompassing like that. But it leads into the point that I was trying to get across yesterday. This forum is called PANDAS *and* PITAND - I really want to put an emphasis on "and". Lyme *is* a PITAND. Why do we have to have this apologesis for it everytime the subject comes up? I don't hear this same resentment over myco p or clostridia or candida, etc. The narrow focus on strep is what delayed me from investigating this avenue YEARS ago. Who knows what difference it might have made if we had begun treating my ds before he reached the level where he could barely function? I pray to God that it is not too late, but it may be the difference between being able to bring him all the way back or not. Meanwhile, I don't know at what point my ds18 became infected with Lyme. It could be the reason for the additive affect that lead to his dramatic nosedive last year, or it could be what set him up so that when he was exposed to myco p, he then nosedived. Or it could go back much, much further and be the reason that when he was exposed to strep, myco, etc over the years, he just kept sinking. Only God knows the answer. But all of these microbes are capable of suppressing the immune system and making the body vulnerable to other microbes. It's important to have an idea of what you're treating before you start throwing meds at it - that's Healthcare 101. Especially when it comes to antibiotics. pandas16, you appear to have a very strong opinion about this and your posts have conveyed to me that you seem to believe there is a lot of quackery involved (which hopefully will clarify things if you are wondering why some here might seem upset by your words). This honestly puzzles me because it is the same attitude that so many have about PANDAS. Including the fact that there are doctors out there who profess to be treating it when they haven't a clue of what they're doing. I would have thought with your experiences with PANDAS, you would be *more* open to PITANDs rather than *less*. Someone posted on this forum that Dr. Cunningham's tests turn up more PITAND cases than PANDAS - I believe it was something like 47% strep and the rest 'other'. Your strongly held opinion has about a 50-50 chance of leading to someone not receiving the best possible treatment. Though I understand completely why Dr. Cunningham has found it necessary *as a researcher* to narrow her focus to proving PANDAS, for parents who come *here* seeking help, it is only right that they be informed of ALL the known possibilities that could be causing their problems. And also the possible consequences for missed diagnoses. Some patients with Lyme ended up with a more severe, intractable case because they were given steroids - as one of those overwhelmed parents who is going broke from all the testing, I STILL want to know that possibility exists while I am making my decisions. In the same vein as informed consent, most of us would like to make our treatment decisions with all the info available even if all we have is as yet unproven or anecdotal. ziva, after all that I have learned about Lyme, if I saw a tick on my child, I would *absolutely* get them tested with at least an Igenex Western Blot - in fact, I would probably request treatment *anyway* whether I did the test or not and whether it came up positive or not. A child with strep is going to be a lot more vulnerable to borrelia & other tickborn infections and the last thing they need is something that will complicate their condition *exponentially*.

My ds18 has only had strep once that I knew of around the age of 6. I learned about PANDAS some years ago, but dismissed it as a possibility for us because we have no clinical history of strep. I thought - and our PANDAS doc agreed - that mycoplasma or a virus was a bigger suspect & that my ds is more likely a PITAND. We decided to test for all the major suspects known to be capable of neurological impairment which definitely includes Lyme. We almost decided to save money & skip it, but wanted to rule it out before we did IVIG because I had read that can skew the test if you decide to do it later - my ds had no apparent risk factors (I've never seen a tick on him and we are not in a "hot spot" for it). He turned out to be solidly positive for Lyme not just by Igenex rules, but also by CDC rules. Not sure who was more stunned - me or our PANDAS doc. Anyway, I just finished reading "Cure Unknown" and all I can say is wow. There are many unacknowledged hotspots & the politics affecting the info the public receives almost makes the attempt to get people to accept PANDAS as a reality look like a walk in the park. For those who are skeptical, but seeking to understand - I strongly recommend this book. At one point she describes the research of a doctor in which he was examining the brains of deceased Alzheimer's patients & 7 of the 10 he looked at had Lyme spirochetes in them. What was the most alarming about it was that he discovered these patients had infections that had become transfections - their bodies' were churning out cells that had essentially hybridized their own DNA with the borrelia's DNA. Just imagine what THAT can do to an immune system that's already turned on its self! There is so much that we do not know about it, but what we do know makes it clear that Lyme is not a disease that can be safely ignored at this point - esp in a child who is already immune impaired. In addition to the immune health of the host, there are a substantial number of borrelia strains & some of them are relatively mild while others are quite virulent - so that's another reason that some people will get a mild case or no symptoms at all while others end up debilitated. My son's tests for strep found nothing, viral titers high but not high enough to mean anything, mycoplasma results were ambiguous, & the lyme we almost didn't do was definitively positive. I am one of the grateful moms who are indebted to the Lyme moms who post here to let newbies know that it's not all strep/PANDAS - there are a substantial number of PITANDs as well. All of these neuro bugs can suppress the immune system in a way to avoid detection which also makes the host more vulnerable to other bugs, including other neuro bugs. The way I see it, the more info we have about what specifically our kiddoes' bodies are fighting, the better our chances are of getting them well again.

I have been thinking about the responses I got to my question about doing ivig - specifically contemplating the possibility of trying to add another antibiotic to the zithromax we are already taking. DS18 is positive for lyme & ambiguous for myco (Dr R thinks it's a very strong possibility based on ds's clinical eval). He's taking 500mg of zithromax in the am with a large dose of probiotics in the pm. He is also still on the herb lomatium. Augmentin & doxycycline both caused him to develop diarrhea (Wondering whether that's considered a definite intolerance of the drugs or could it possibly be a herx rxn?) What other abx are given along with zith? Should I ask Dr R for something like ceftin or biaxin &/or maybe flagyl? (He told us to find a LLMD but promised that he was not going to abandon us while we're waiting to get on board with the new dr)

My ds18 (recap: tics started at age 4 & have incrementally worsened over the years. positive lyme, neg co-infections per Igenex, questionable strep, ambiguous myco, some high viral titers) has been on the herb lomatium and then added on zithromax for a couple of months now - was not able to tolerate augmentin or doxycline at this point. While the improvements wouldn't qualify as miraculous, the zithromax has DEFINITELY improved things to the point of being tolerable again at least which given where we were is HUGE! So, of the relatively few things we've tried so far, the zithromax has unquestionably brought us the most improvement. However, we are still struggling. He has been able to do some minor schoolwork again, but he still has too many issues to do more than a couple of subjects & other issues that complicate giving him treatments & have us extremely worried about possible health issues developing from his poor hygeine. Our UHC insurance begins anew as of June 1st. But our LLMD appt is not till June 20th. Dr R in Plano will do IVIG for us & UHC usually covers it so we are thinking of going ahead & getting that treatment now when all of our deductibles have been met for this year rather than waiting till we have to meet them all again. Dr R does use short term steroids to minimize the IVIG side effects & I would be reluctant to do it without them after what I've read of the side effect possibilities. Opinions? Go for it? Or too risky? Wouldn't being on treatment help minimize the risks?

I've seen dandelion recommended as similar to milk thistle - would it have the same ragweed allergy cross-sensitivity?

I'm pretty sure "herd" was a typo for "herx". What are your concerns about melatonin? Recent research has shown that previous concerns by doctors about how supplementing melatonin might impact negatively on the endocrine system were unfounded if that helps any.

My ds13 has had a lingering dry cough for over a month - he's been on zithromax for about a week now - is myco not responsive to zithromax or should we be looking for a different culprit?

We vary our fruits but this is our recipe for 6 of us to have 2 servings each (using regular sized mugs) so you'll want to scale it to suit your needs: 3 ripe bananas (this is our minimum - often we throw in more if we have them, I've used up to 7 - it reduces or can even eliminate the need for sweetener though that depends on what other fruits you use) 3 cans coconut milk 1 8oz jar Maranatha macadamia butter (we needed to add protein - I imagine any nut butter would do) 1/8 - 1/4 tsp sea salt (that seems to help mask the coconut flavor to me, but several of us have adrenal fatigue so that may be a factor in my perception) That is our base recipe. I often add a tablespoon of vanilla (Frontier's alcohol free). Our most common one adds a bag of frozen cherries and another bag of frozen wild blueberries. We have also done one with frozen strawberries & another with pineapple. My ds13 wanted one with ALL of these fruits for his birthday which I ended up having to split into two bowls & was a real mess though still tasty. I have also doubled up on the nut butter one morning when I wanted them to have something that would stay with them well because of something we were doing that day - and they didn't get hungry until 2pm! Oh, and I made a special one last Christmas with Enjoy Life chocolate chips & peppermint flavor (minus the nut butter because the flavors do not work well, IMO) that the kids loved as a special treat. I've used agave, palm sugar, maple syrup & honey as sweeteners. Honey seems to usually work best. I use a stick blender to blend it all together & it works very well.

My ds18's neurologist says that OCD & ADD are just brain tics - thought that was an interesting perspective...

The vax companies have already made it quite clear that our kids are just so much collateral damage - the cost of doing business. I have heard enough from parents of neurologically damaged kids & seen enough from our own experiences to be totally convinced that vaccines may not be THE cause of these conditions, but CAN certainly be A cause of them. My ds18's (PITAND/Lyme) early tic exacerbations coincided with shortly after his shot series at 4 & then 6 & then when we did the booster around 10. In our case, their effect was the same as if he had caught strep or mycoplasma or some other bug that sets off the immune system. But that's hardly a reach, since the whole point of a vax is to set off the immune system - otherwise your body won't mount a sufficient defense to generate immunity. Which not coincidentally, when you look at research where they generate allergies in lab animals to test for different things, they inject them with things similar to vaccine adjuvants & excipients. All 5 of my kids had minor immune issues at birth (dairy intolerance & some small digestive issues). The last one, almost 5 now, whom I have not immunized at all, is the one who has the least immune related problems & no neurological issues. My 8yo who seems borderline PITAND would probably be significantly worse if I hadn't stopped vaccinating him after his 1 yr shots.

Thank you so much, pixiesmommy! My kids love coconut milk smoothies, but I didn't do them often because of the bpa thing. They will be so happy! lfran, where do they keep the fresh? In the dairy case? (I noticed when I was at Whole Foods last Thursday looking in the dairy case that So Delicious has a whole lot of new products in their coconut milk line, but unfortunately, they use a lot of other ingredients that I prefer to avoid)

We tried the packets, but as I mentioned on another thread, had a difficult time masking the smell/flavor without overdoing the juice (which we're supposed to be limiting because of candida issues). We switched to the capsules - same probiotics just lesser amount - and had no problem with them. But then we think our ds's problem is probably PITANDS as we don't have a track record with strep (at least that we detected anyway) and his exacerbations seem more generalized than specific. I would guess it would be more of an issue for those who have become hyper-sensitized to strep in particular? Would those of you using the packets mind sharing how your kids are taking it?

My ds8 got molluscum c. when he was around 3 and the dermatologist said that it was common in toddlers because of their immature immune systems. Which made me wonder since he was between 3 & 4 - not 2 - and he is my child who I believe is borderline PANDAS/PITAND (anxiety that developed following a mycoplasma-type infection last summer) So at least this much is certain: mainstream med regards it as a bug that shows up when the immune system is not up to par.

You are an answer to a prayer! I was at the store buying some canned coconut milk today & wishing I could find a brand that was BPA free - I know I've seen that brand somewhere before - does Whole Foods carry it? Might've been over at Amazon.com...

Now that DS18 has tested positive for Lyme, we have been wondering how many of the rest of us have it. But as a family of 7, we can't afford to test all of us even if insurance covers 80%. We did all take lomatium (an herb which is used for treating Lyme) along with DS18 & now I am wondering if the detox rash was actually Lyme die off. All of us had it, which is unusual, but DS18 & I were two of the worst cases. And 4 of us had a lesser repeat of the rash a few weeks later which is supposed to be extremely unusual. Now I'm just having random itches from time to time. This has not been like an allergic reaction. And interestingly, we are not reacting to oak pollen this year like we did last year (though grass pollen IS still bothering me, but that one's been around far longer). So I'm wondering if we should all go ahead & do at least the herbal treatments along with DS18. What do y'all think? What are the rest of you doing?

Hang in there, Emerson! My DS18 has been on lomatium for almost 3 mos now & went thru that horrible, incapacitating rash ~1 wk into it & swore at the time that it was NOT worth it. But little by little, so slowly that it took us a while to even notice it, he has been improving & now he says it was worth what he went thru to get to this point. Try to keep your mind occupied with other things as much as you are able to help the time pass faster & focus on the gains, no matter how minor, knowing that they are going to keep adding up! (And when we have our turn in 3 mos, you can post this back to me! )

We just started TaeKwonDo this year & it has been absolutely therapeutic for our kids. It's not cheap, unfortunately, though we have been blessed to find a place that has amazing discounts for siblings. But DH said that if we end up having to choose financially, he would drop the vitamin supps before he would drop TKD at this point - it has been that good.

From WebMD Basically, try to take it with something low in minerals, but know that it is available in formulations as a calcium salt (doxy attached to calcium) because it does not bind all that tightly so I wouldn't get too uptight about it.

Thanks! Naturally, citrus is one of the foods my DS is supposed to avoid. Talked to both DH & DS18 about things - we decided that we have seen enough worthwhile gains with the lomatium that we are going to keep him on it. I'll be curious to see how it affects his coagulation since Dr. F will be checking. Interestingly, he told me today that he has had a dull general muscle ache for as long as he can remember, but that it has been around so long he had stopped noticing it. Now it comes & goes. And all this time since he tested positive, I was thinking how odd that he would have Lyme & never have any kind of muscle aches. I am going to add some chlorella as well (not sure how I ended up typing "chlorophyll" in my OP, I meant chlorella). Then I will start him on the doxycycline & see what happens. I'm thinking - hoping - that should help us keep things at bay till the dr can direct us. (fingers crossed) Love the idea about the foot soak! I will have to check with him & see if he can handle it!

Eating too close to bedtime - esp. sugary stuff is DEF a factor! Your mom's instinct is right on that one! It's recommended that you have ~3 hr gap between dinner and bedtime - dinner should include a modest amount of complex carbs to help contribute to sleepiness. I had my 18yo (142lbs) up to 9mg of time released melatonin last year when things got bad. It worked for a while but then he exacerbated further and everything was a struggle. I finally dropped it. We've finally had some improvement with our recent efforts. Re-started it to help with adjusting to daylight savings time and 1 tablet (3mg TR) actually caused him to fall asleep in his chair! Seems pretty likely that there's a tolerance effect involved to some extent - maybe give your ds a melatonin "holiday" on a Friday nite or a nite when it's less likely to cause problems. I've heard good things about the herbal combo products, too (valerian, etc).

DS18 has an appt with Dr. F in Louisiana on June 20th. Trying to figure out what we should do in the meantime. He says he uses Dr. Crist's protocol. Dr. R in Plano gave my ds a doxycycline Rx to get started though I've been holding off till his gut stabilizes from this recent stomach flu we've had (if there's any stomach upset, I want to know what to blame). We've been on the herb lomatium & are about to finish it - ds18 says that, despite the rash from hades, it has been helpful (nothing earth shattering, but seems to have helped turn him around just when another downward spiral was setting in - that's tremendous to us at this point!) I've noticed that it seems to have blood thinning properties & read yesterday that Dr. Crist likes to use heparin as part of his therapeutic approach in conjunction with abx. Things that make me go hmmm. Anyway, I don't want to lose the little bit of momentum we have gained after all this time & money. If we've managed to knock the lyme back a bit with the lomatium, I don't want to let it bounce back. Dr. R ran some tests for parasites, giardia, gut worms, clostridia etc, that were negative (LabCorp - so not sure how trustworthy the results are). We've got all the Igenex & other tests done. I don't think we need anymore tests. Should we just jump in & start the doxy (+probiotics, of course) or is there something else we should do to prepare? I was told that detox was important when you start, but not sure what we should do other than milk thistle & dandelion root - chlorophyll? Is there a particular brand anyone can recommend? Is Mercola's good? Epsom salt baths ain't happening - he can't get into the shower let alone the bath tub (& it's due to being overwhelmed with tics rather than OCD so it's not something he can try to work thru rationally)