Bill

The forum allows one to post immediately. Professionally my responses would be the one I send 'tomorrow.' But why we are so angry, at least for us, we practically begged he who will now be known as 'S' to search for other causes going over the symptoms time and time again. He refused. I won't say that I recall him directly bashing other doctors but on our last visit, without me even saying the word PANDAS (we had recently learned of it), he looked at me and said something very close to "If you're asking me if I believe in PANDAS, I don't." End of discussion. No further testing. At the time, I had not learned much beyond the name and sat there on my CANS.... I've promised myself never to do that again. That was the start of our journey towards real healing to include finding this forum. Our son, who will be 14 this spring, has been steadily improving for the last 16 months. He was steadily going downhill since the age of 4. Really though, 'S' represents the last in a long line of frustrations with doctors. As another poster stated, I have nothing against doctors who say they can't, won't, or are unable to treat. I do have an issue with being mocked. And yes - my wife and I both felt that we had just been mocked that day. Yes. Let's give credit where credit is due. 'S' has probably done many great things through his career. Publicly patronizing PANDAS is not one of them. As I stated in my earlier post, perhaps his views are now changing. Awesome. Glad to have him in the fight. But pardon me if I still feel the sting. (BTW - 'S' early study following up on Swedo's study that negated Swedo's results was a reprehensible study. Even without a medical degree I can tell you that he took her premise, did not follow her selection criteria, and then found that his results did not support her findings. Duh! Now how does something so sloppy even get published?) And no, I would not spend hours upon hours researching allergies. But then again, allergies never turned my son into a homicidal stranger who was losing his mobility and becoming emotionally paralyzed by OCD. Please realize that this post is in no way meant to be antagonistic to anyone on this forum. Honestly just trying to explain my anger. Also, I find this forum to be therapeutic to be able to express my feelings to so many others who can say, "Yup, been there and understand." Bill

First - I think Beth Maloney is my hero. T.Mom - I like your idea but perhaps add a twist. What if we put together the histories on our children/selves, the good, the bad, the ugly, combined them and sent them forward in a book form. How many medical histories could we put together just from this forum. As you suggest, these could include symptoms, treatments, and progress (positive and negative) through the years. And of course listings of the test results. Such a book - document - would not meet the criteria of a controlled study by any means but it sure would give them a lot to read through. Perhaps a collection of such would give other doctors something to think about. If nothing else, it would call attention to our dilemma much like Saving Sammy and the Under our Skin video. The negative would be that it would really show how disorganized and desperate our side is. I don't mean that the way it sounds but just that if put down in one place it will become very obvious that we have followed a thousand paths grasping at straws (collectively). Then again - that's our plight until they pull their heads out of their CANS. As background, we went to the pediatric neurology center at JHMU for 2 1/2 years - before PANDAS/Lyme ever entered our vocabulary, .... you basically see one of the interns and if you are "lucky" the great Singer himself might grace you with his presence. On one hand they would tell me that first generation genetic diseases are unlikely so wouldn't do some tests but then turned around and diagnosed my son with generalized genetic dystonia based on symptoms only. No history of dystonia in our family. Oh, and those psychological issues, go see a psychiatrist. It is my humble observation that the interns we saw are very open to the possibility of PANDAS and related, but, politics dictate that they keep their mouths shut. They are there in training and department heads can probably decide their fates. I am hopeful that the couple we saw will break away and follow their hearts on this though. But one has to appreciate the beauty of Singer's stance. He has a rule that states 1/3 of the kids with neuro-muscular disorders will continue to get worse. 1/3 will stay the same. 1/3 will get better. And he honestly does not seemed concerned that he does not know why!!!!!! So - when my son gets much better, I plan to throw it in their faces (if only I was as articulate as Maloney) but I have no doubt that my son will just be one of the lucky 1/3. I think we would have to be very careful - and yes I'm going to say it - protect all of the doctors who are helping us. Just rambling on a Saturday morning........

I drive so not sure which airport would be best. Doubletree is the standard but was booked last time we went. Found a room at a place called The Amsterdam in nearby Stamford (just south of Dr. B.'s). It was more expensive than the WeCare rate provided by Doubletree but still much cheaper than most in the area. It might also be a little farther but I think the drive is easier. No pool but the room comes with a small refrigerator, microwave, coffee pot, and super fast wifi connection. McD's not too far away in addition to other usual fast food within reason. Almost forgot, "continental" (as in really limited) breakfast is provided free. Not so at the Doubletree. The Amsterdam is older and rather drab in the hallways but I found the room to be every bit as nice as the Doubletree. I was so frazzled on the last trip, I did not even think to ask them if they had a special rate for medical related visits. If memory serves, $25/night more than the Doubletree's WeCare rate but I thought the included breakfast, refrigerator, and microwave more than made up for it. 9 Clarks Hill Avenue Stamford, CT 06902, United States +1 203-327-4300 stamfordamsterdam.com No bed bug reports for this hotel the last time I checked either. Good luck. bill

Concur with others. Singer told me flat out three years ago that he did not believe PANDAS was real. That was the last time we went to Hopkins. I've not read the article though and perhaps this is their way to "admit" they might have been wrong without saying it.

Warning noted, however, pre-SSRIs my son threatened to kill my wife and in a complete deadpan, stated that he would like to break every bone in my body the next night. He was 7. Everything comes with warnings.

Count us as another in the minority. In brief, symptoms of motor movement disorder, raging, and dilated pupils kicked off our journey some 6 years ago. Anxiety and OCD kicked in less than 3 years ago. Later (in the last 18 months), our son was diagnosed with PANDAS first and then Lyme/bartonella. The first SSRI we tried - Zoloft was a gift. My son started off on 12.5mg, after 3 months went to 25mg, and stayed there for some three years. This was pre-OCD and anxiety. Within 2 hours of the first dose, his raging melted away. I do not remember his weight back then, perhaps 50lbs. The Zoloft "failed" rather spectacularly when anxiety and OCD hit. This was all pre-PANDAS/Lyme diagnosis so we went through the usual psychiatrist trial and error. (BTW - it was a very observant pediatrician who first suggested Zoloft; since retired.) I can't recall everything thrown at him but the next several months were H3!! on earth until Prozac. We noticed improvement after 2 days. I think he was on 60mgs. at 70lbs. Not long after we went down to 40mgs and we found a psychiatrist that understood PANDAS. All the typical combinations tried did not work. Prozac, like the Zoloft before, works for him for rage. Nothing seems to work with the OCD or anxiety though he is better today than then. Today, he is on 20mg/day and weighs just under 100 lbs. This is after 14+ months on ABX and 3 IVIGs. Good luck. bill

No precautions other than 48 hours (I think) of staying off his feet, no exercise etc. allowing the leg to heal. Otherwise, right back to school. bill

We've not figured it out either. It took me a couple of years to accept the fact that he was not in control -hmmm, same years that our doctors insisted there was nothing wrong. Until then, we tried everything. Time outs are great if your child will follow direction. I still remember night after night holding him in his room for his time outs. On the positive side, I was getting exercise too. He seems to be over the worst of it so we've not had the severe discipline problems in a while. We did make it very clear to him that if he hurt someone in the family we would take him to a hospital. That scared him, especially after we took him there once - me holding him down the whole trip there. So one bit of advice, you have to follow through when it's serious. I do feel that it helped to discuss his behavior with him when he was in control. That also allowed us to gauge how he was doing. If he was remorseful, great. When he wasn't, those were scary times. Knowing that he wasn't really in control we've moderated our stance somewhat and pick our battles. (Our daughter reminds us that we allow him to get away with things that we would not allow her to but then again she's 17 and life isn't fair.) As he continues to heal, discipline becomes easier as well as less often. So - I don't think that easing up on the discipline while they are sick is necessarily detrimental in the long term. If your kid is essentially a good kid and it's the PANDAS making her behave inappropriately, I think they self correct as they get better as long as you are there to keep moving the bar in the right direction. All of this is of course - IMHO. bill

School is tough just for the disruption. Our son minded having to go to the nurses office every day because he had to explain to friends why. Well, he didn't really explain why but came up with something. In our district the school just needs a signed order from the doctor to hand out medication. We've never asked about non-prescription. I'm sure that if they needed a 'note from the doctor' ours would gladly do it. We've worked our way to a point where he no longer needs medicine during the day, just morning and night. We try to make sure he takes probiotics as soon as he gets home and then last thing before he goes to bed. In the morning, he gets his probiotics with his morning ABX. Nighttime ABX are right after dinner. Best we've been able to manage. Glad she is doing better. bill

Understand the sentiment. Last visit with Dr. J. I asked the "How long?" question myself. He typically sees 1-3 years for recovery. Just completed 14 months with a long way to go symptom wise... Bill

We can relate! Fortunately (ha!) our son tested positive for Bartonella so we had clear cause for treatment. This is a really good thread reinforcing that there seem to be no real shortcuts to any of this. With all this talk of herx and reactions though, I'd like to throw a question out that I've thrown out a couple of times before...what does it mean when there is no real reaction to ABX or supplements? We are seeing progress but aside from some minor gains/minor losses after starting things, nothing of note. And those minor things could just as easily be "noise." We are measuring progress over months. Don't get me wrong, I'm plenty happy to be missing the strong negative reactions but it is puzzling. PANDAS + Lyme + bartonella + maybe babesia (but no proof) so much the same as many here. I've told myself that his methylation pathways must be perfect and everything else is working optimally (well, maybe not his immune system) - but - if that's true, he ain't healing any quicker than anyone else here! bill

I initially felt the same way with our son who was 7 turning 8 when we made the decision to try medication. In hindsight, not really a hard choice when your 7 year old child threatens both parents....low dose Zoloft helped initially. After 3 years it just stopped working. Took us 3 months to find that low dose Prozac worked. These worked for the anger; nothing touched the OCD. Between the Zoloft and the Prozac, we tried a number of other drugs/combinations but nothing worked. Very interesting for us was that we saw immediate - as in 2 hours - dramatic effect on our son when starting the Zoloft. It was 2 or 3 days most before we realized the Prozac was working. The doctors didn't believe us of course. I've since seen studies confirming that some patients are super responsive. (There's a clue in there for us somewhere....) Son was eventually diagnosed with Pandas and Lyme though the doctors do not agree which came first or for how long.... For comparison, between age of 8 and 11 (50-70 lbs), 12.5 - 25mg Zoloft. 11 and 13 (70-95lbs), 40 - 20mg Prozac. We were able to lower the Prozac from 30mg to 20mg after the 2nd IVIG. I think we could lower again but the psychiatrist wants to wait a little longer. bill

For OCD or dystonia? In the early years as his dystonia continued to worsen, and all the experts just told us that's the way it was....I read quite a bit about DBS. Since starting treatment for Lyme, we've been able to drop his dystonia medicine - he was up to 22mg/day of artane. While I can't say that his dystonia is clearly better overall, I can say that it's no worse. That in itself is a victory. Current docs. believe that his neurological symptoms, physical and emotional, will heal with time. A year ago, not one would say that. Now, they are starting to. I am no longer researching DBS for the physical. I know that DBS has now also been used to treat for severe cases of OCD but I don't think he's severe enough at this point. I just scored him 25 on the YBOC scale. He's a little worse after the IVIG last week. I am not trained so who knows how accurate I am but when the OCD hit years ago, he was approaching 40. So progress.

I'm the first one to say I'm not sure of anything. I'm not even sure the Lyme is the final answer. Pandas was based on the ASO/DNASE levels. CamKinaseII was 126 so borderline; some of the other anti neuronal antibodies were on the high side. The main thing that led us down that path was that his OCD was practically overnight. We saw OCD like symptoms for a couple of weeks when suddenly it went extreme along with his behavior (anger) overnight. Our pill pushing psychiatrist did one right thing for us, he ordered the ASO/Dnase tests and wrote the word PANDAS on the order. The real reason I continue to say PANDAS is because all of the current doctors continue to say PANDAS and Lyme (+co-infections). My best "guess" at this time is that my son probably had the lyme/bartonella first, for years, before the PANDAS struck. That guess is based on symptoms our LLMD believes to be a result of Bartonella such as complaining of pain in his hips or just getting tired when hiking long before he should have. Both of my children had a history of strep that did not seem to be cleared by ABX. Both had their tonsils removed. My daughter also had her adenoids removed. My son did not. So there is a history of strep. But as I said before, many of his symptoms do not fit the PANDAS model. OCD as a symptom showed up several years into all of this. Dystonia and psychiatric issues were the first symptoms by years. Is NAC a glutamate modulating drug? I did try that not long after the severe OCD started. After 2 months, we stopped. I did not see any change. Perhaps that was too soon but we saw an immediate (2 hours) positive impact when we tried Zoloft for his behavior. Zoloft failed at the same time the severe OCD hit. We eventually discovered that Prozac worked and worked within 2-3 days. The SSRIs don't seem to help with the OCD but make a huge difference controlling his anger. Consistent with what others have observed, low dose SSRIs are effective for him. Higher doses don't do a thing. Below is what he is on at this time. He was on 1,000mg Augmentin XR twice a day but we recently dropped that as his bowels were starting to run too loose. I think some of that is more due to his poor diet though. There are few vegetables we can get him to eat beyond french fries, corn, and fried okra (of all things). We have not restarted the L-methylfolate (5-MTHF) since running out a month ago. At this point, I'm thinking about letting some of the supplements stop as we run out. I can not say that I've seen anything positive or negative using supplements. I will continue the probiotics. Prozac 20mg daily Minocycline 50mg X 2 daily Azithromycin 250mg X 2 daily Tindamax 500mg tablet Fri pm, Sat am + pm, Sun am only Vitamin K2 2 X90mcg; Jarrow MK-7 from Natto extract Methyl B-12 2mg daily L-Methylfolate 2000 mcg daily (Ran out) Vitamin D 2,000 IU daily Vitamin C 500mg daily X2 daily Magnesium 84mg Mag-Tab SR X 2 daily Liver Health Complex X2 daily; (Milk Thistle, NAC, turmeric, dandelion) from Costco Probiotic Several (Acidophilus + Bifidus, 8B) Saccharomyces Boulardii + MOS 5B/capsule X 1 daily (Probiotics vary)

Dr. B. stated that my son would need 3-4 IVIGs. We just finished #3 and already scheduled for #4 in January. My son is to have his total IGg tested right before #4. He is basing the need for the first 4 on symptom resolution. My son has a ways to go..... My son has been diagnosed PANDAS/LYME. It took us 5 years to get that diagnosis. In hindsight, 8 years from the first symptoms (3 for us to get a clue). For comparison, my son has significant neurological symptoms (dystonia, tics) in addition to OCD and behavioral. Dilated pupils and inability to perform math are almost 100% resolved at this point. Happy Thanksgiving, bill

Neither steroids or PEX had any real effect on my son's Pandas. PEX caused a slight improvement with my son's dilated eyes and the dystonia in one foot/ankle about 6 weeks after treatment which lasted for maybe another 6 weeks. The improvements in his dilated pupils was measurable but not huge. The improvement in the dystonia was noticeable but so short lived it would be impossible to positively say it was due to the PEX or just a natural cycle improvement. There was no change in his OCD. The doctor we were seeing at the time did not seemed inclined to repeat the process I think due to the lack of any measurable response to the standard PANDAS treatments. Given the expense and ordeal of it all, we were not inclined to push for a repeat either. We got the lyme diagnosis about 9 months after PEX. Took us another 4 months to start a Lyme treatment plan. We started to see real improvements after the first 6 weeks of treatment again in the eyes and foot/ankle. ABX alone or in some combination with all of the supplements we've tried have returned his pupils to almost normal most of the time. Dystonia in foot/ankle improved and stayed improved to a point but no more. Tics became a new symptom with ABX. Nothing seemed to be directly helping with OCD. Various SSRIs as well as therapies have all failed miserably. Started IVIG last June. Just completed the third one. IVIG seems to be pushing progress each time though slowly. The first one improved his mood/behavior. After the second, his math skills seem to be returning and he has been doing his homework without help for the past 6 weeks or so. His third was last week. His foot/ankle feels better and he was able to hold his arms straight in front with palms down really well. Prior to this, he could not. After IVIG I noticed that his arms/hands shake significantly when eating/drinking. That was the abridged edition of the long answer. In short, we did not continue with PEX or other as based on everything I read on these forums as well as elsewhere, it was more important to tackle the bacterial infections first, prior to tackling the immune system responses. Hopefully we've not started the IVIG too soon. Just some other things to note concerning my son, he never had a sawtooth pattern to his symptoms. He just tended to get worse periodically about every 18 months. He does not seem to react to illnesses around him. Medicines/treatments/supplements generally do not cause severe reactions. Some combinations have created progress in some areas. No 'herxing.' Even the IVIGs show little regression beyond tics/shakiness. No separation anxiety, no excessive peeing, reading was never disturbed, bright lights never phased him (even when his pupils were monstrously dilated), sound is his friend. I like to include a list of his symptoms and non-symptoms in case any one else is dealing with the same. Happy Thanksgiving, bill

Ah, my memory is so poor these days...Amsterdam includes a small microwave as well plus coffee pot, iron, etc.

Son received his 3rd IVIG at Dr. B.'s last week. Will update on son's progress in a couple of weeks. Was unable to get a room at the DoubleTree - completely booked. After much searching, was able to get a room at the Amsterdam Hotel in Stamford. A little bit farther away but easier to get back and forth in my opinion. I looked back at old receipts, staying at the DoubleTree under the "We Care" program cost me $94/night after all taxes/fees added. Staying at the Amsterdam cost me $125/night (total). $30/night more but that included a (limited) breakfast and refrigerator in the room. No pool though. Assortment of dining close by. Checked the BedBug registry - no reports. Hotel is small, but, our room was fine - just as big as the DoubleTree, very clean, and with the exception of guests that let their doors slam - quiet as well. Well - actually I could hear the interstate but kept the fan on to drown it out. Not sure if there were guests in the rooms around us though - seemed not to be full. Thought I would post as most hotels in the area are closer to or over $200/night before all the taxes. Amsterdam Hotel 19 Clark's Hill Ave Stamford, CT 06902 UNITED STATES 800-362-7666 Email: reservations@stamfordamsterdam.com Disclaimer: I have no financial interest in this hotel and my experience may not reflect other's experiences.

Son received his 3rd IVIG at Dr. B.'s last week. Will update on son's progress in a couple of weeks. Was unable to get a room at the DoubleTree - completely booked. After much searching, was able to get a room at the Amsterdam Hotel in Stamford. A little bit farther away but easier to get back and forth in my opinion. I looked back at old receipts, staying at the DoubleTree under the "We Care" program cost me $94/night after all taxes/fees added. Staying at the Amsterdam cost me $125/night (total). $30/night more but that included a (limited) breakfast and refrigerator in the room. No pool though. Assortment of dining close by. Checked the BedBug registry - no reports. Hotel is small, but, our room was fine - just as big as the DoubleTree, very clean, and with the exception of guests that let their doors slam - quiet as well. Well - actually I could hear the interstate but kept the fan on to drown it out. Not sure if there were guests in the rooms around us though - seemed not to be full. Thought I would post as most hotels in the area are closer to or over $200/night before all the taxes. Amsterdam Hotel 19 Clark's Hill Ave Stamford, CT 06902 UNITED STATES 800-362-7666 Email: reservations@stamfordamsterdam.com Disclaimer: I have no financial interest in this hotel and my experience may not reflect other's experiences.

Sounds interesting. The testimonies seem a little too unbelievable - but - I did not find anything negative against the product except for a couple of folks who did not receive their orders some years back. Please provide feedback to include what if any health issues seem to improve. I made a copy of the ingredients so I could research this some more. Thanks, bill

"I seriously wouldn't waste time reading something what you don't understand." "One needs a basic understanding of Quantum physics and the human nervous system physiology to understand most energy medicine concepts. There are lay term DVDs available but like I said, unless you are ready to believe you won't." I admit, I am seriously lost in this conversation. I went back to the beginning and reread the OP thread and subsequent posts. It seems to me that a question was asked because the OP wants to explore and try some of the stuff that Klinghardt proposes. It was then suggested that the OP was secretly trying to start an argument. Maybe or maybe not. I've read up on Klinghardt and did not find anything that made me want to try anything he was promoting. Does anyone have anything to make me want to reconsider? No specific information was provided throughout the conversation. And the quotes above have me upset especially since this is not the first time they've been put out there. Who is anyone on this board to suggest that the rest of us are incapable of understanding something? One needs a basic understanding of Quantum physics and human nervous system physiology to understand, wouldn't waste time reading something (what) you don't understand - please. I think the statement "...unless you are ready to believe you won't." is the best summary. So because we are all too dumb to understand, we should accept it as faith. Would that be religious faith or faith in magic? My wife prays for our son. Neither of us believes in magic. Is all hope lost for my son? And while I'm on this rant, you can't say that because there have been no long term follow up of Dr. Jones' patients that none are cured just like I can't say they were. There is something fundamentally out of whack autoimmune or otherwise. That is really all any of us know. Reinfection is just as likely as a remission coming to an end. Long term ABX must be bad (everyone says so anyway), does anyone know what the impact of long term herb usage is? And all these "cured" people coming out of Europe or the far east....please please please, share some of the information. Everyone on this board seems to have a very open mind trying all sorts of approaches, holistic and conventional. This is exactly the right place to question what we are reading and hearing. Back to the OP's question. "Most therapies that they use dont have clinical trials which prove their efficacy and is anyone on this forum really cured using them??" I did not find any evidence. I only found "testimonies." I found plenty of QuackWatch alerts. Perhaps someday I will get smarter with age and be able to grasp the science behind ART.

"I have personal knowledge of several people who have been cured- biophoton therapy, NLP, NET, NMT etc. So many stories of children with even the worst kind of cancers, AIDS, Lyme etc being cured based on Holistic protocols alone, including the recent GcMAF. I actually believe in a combo approach. But what I have said is in MY experience and research I have read about cures only with energy medicine. No stories of cures with conventional. I am still pursuing a middle approach because thats what I believe in currently. " Hmmm, I think Dr. Jones would be heartbroken to learn that none of his patients have been cured. Guess it depends upon the definition of "cured." bill

PCR testing is what I was thinking about. I do not know enough about the science behind the test but wonder if one can essentially get false positives based on the garbage DNA picked up through the millennium. bill

So if Lyme has been around for thousands of years then it is possible that Lyme has been passed mother to child for thousands of years which would mean, genetically, we might all have a little Lyme bug in us. Just wondering how that impacts testing? bill

Just curious, do you have a particular method for tracking symptoms to changes? I track my son's OCD/anxiety/behavior based on 1-9 scales I came up with. In the beginning of treatment, his scores were all over the place. As time has gone on, they are much more consistent. In both extremes, it was/is difficult to correlate changes to any specific change in medicine or supplements. Then again, my son seems to be an odd ball here in that he does not seem to react much to anything (illness, new ABX, supplements, ....). Just wondering who else tries to document and track changes in ABX/supplements with symptoms over the long term. Maybe you (someone) has a better way of doing this? bill