Bill

Yes - can relate. I'm not qualified to say good or not but I think it's a good thing! Your son needs reinforcement that he need not worry about that any more. Heck, most non-OCD folks would freak a little if something fell in the tub with them. BTW - I gauge where my son's OCD is sometimes by seeing how gross I can get in conversation without him reacting in an OCD way. (Hey - don't judge, it's a guy thing!) There was a time when he could not separate reality from the ridiculous when it came to his contamination OCD. bill

Asked my doctor. now can't read my own notes but the tablet has been associated with psychiatric side effects. As many (most?) already have psychiatric elements, not something she would want to chance adding to. Believe she also thought that the tablet form was compounded with another drug. Otherwise, not sure why tablet form would be associated with psychiatric side effects and liquid would not be.

Bill, can you give info on what the methylfotate might do for your son. Do they think his system does not methylate well? Is he depressed, tired? Just curious for my 13 year old, not doing that great right now. Our doctor was specifically trying to address his anxiety (as he sat in the exam room picking his fingers to the bone) and detox. Here is a link to an article I found on the TownsendLetter site but have only glanced through (who has time to read articles anymore?): http://www.townsendletter.com/FebMarch2011/b12psych0211.html Sorry, gotta run already - my son is in the bathroom (and has been for over an hour) and I'm up to help with shower. Hopefully I get to bed before 11 tonight. If I get a chance to read the article, I'll post more. bill

Timely! Our doctor just talked to us about Samento and Banderol. She also pointed me to the Townsend Letter (specifically July 2010). Link--> http://www.townsendletter.com/ We are sticking with ABX right now but she is having us (my son) start on methylfolate and methyl B-12 in a couple of weeks I think based on other research coming from this site. (We are changing up some stuff so she wants to phase the changes in.) I've glanced at townsendletter tonight and it looks like a wealth of information. Now to find the time to read it!

I have no idea! But, I wonder if the variances might be due to the exact bugs causing the disorders and in what order they enter the picture. Sudden onset of OCD brought us to a PANDAS doctor after years of behavioral changes and dystonia. He has since been diagnosed with Lyme & co-infections as well. If our current doctor is right, Lyme - or at least bartonella - was part of the picture as long as 9 years ago (he tested positive for bartonella). So, my current thinking is that Lyme and co-infections were probably doing their number on my son before strep really got involved. Or - they all hit at about the same time at a very young age (lots of strep in his history as well). Each child or person is different, they catch stuff at different ages and phases of development, their immune systems alternately mount defenses or not...I concur with others - no one really knows. Too many variables. We never had strong waxing/waning either. More like he periodically got worse over time, would remain steady, and then get worse again 2-3 years later. Now that he is on heavy ABX, I can say that we are seeing some (minor) improvements and he never really had those moments before. Oh and probably not everyone's symptoms are the result of an immune system disorder either. We're all just a group of folks searching for answers. Some of us will stay here and others may have to keep searching.

As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. My son had no symptoms of strep. In fact, he has rarely been sick at all in the last several years. Probably supports the theory that in at least some of these kids the immune system is hyper active if not attacking the wrong things??? bill I had this same thing on Monday with Dr. B. He told me son had an infection and could tell by looking in his nose. The next day we went to regular appt. with family dr. who was eager to hear about Dr.B's visit and he too wanted to know how he knew there was an infection. He couldn't see anything in the nose but said throat had lots of post nasal drip. It did make me think for a bit since Dr. B. barely looked at son and I know he didn't look in his mouth at all. I did like Dr. B. but guess I wan't used to no real exam of the child. Ok... so let me get this straight... is he looking in the nose saying "it looks like an infection" or is he looking in the nose saying "I can see strep in the nose"... because I am thinking those are two different things and I've heard both from folks who have gone to him on various posts. I did not have the same experience, but that may have been because I had 13 years of doctors diagnosing sinusitis in my son, so I was really ready to hear that he had low strep pneumoniae titers and we really don't know but there could be group A strep in his sinuses. I can tell you that I can take my son to 3 different doctors in one week and one will say he is fine - leave it alone - just a little postnasal drip.... one will say he has inflammation and irritation from allergies - no antibiotics just use antihistimines... and one will say the post nasal drip and inflammation is from a sinus infection and antihistmines will make it worse and he needs an antibiotic. It is really crazy. Also, some will diagnose sinus infection using very sophisticated probes and a head lamp while the next doctor (who is eqally qualified) will look up there with the regular otoscope and say "there is no way to tell for sure without a CT scan". So.. I guess I would not think it odd for a doctor to look up a child's nose and say "it looks like an infection and based on your lab work it may be strep" or "based on your lab work it is probably strep pneumoniae".... But... I would think it odd to hear "I can see strep in his nose". I hope that makes sense... and I hope if anyone reads this before going to any doctor they will ask questions. Makes perfect sense. He looked up his nose (normal thingy used) and stated "He has an active strep infection in his sinuses." I asked "How do you know?" He stated "I can see it." I said, "He was just at the doctors and they didn't see anything." He stated "Most doctors are not trained to be able to see it." Okay - I'm paraphrasing since clearly my memory isn't that good (October) but that's the essence of the conversation. And yes, I'm skeptical. Perhaps what he meant was I see inflammation and given your son's symptoms, along with the 10,000 blood test results in hand, it's probably strep. bill

Great information!! My son brought home 6 A's, 1 B+, and 1 D last quarter. Yep - math. Some days he is unable to add to single digit numbers easily (he's in 7th grade). Lately, he's surprised me by doing simple multiplication with fractions in his head. We have been wondering if a tutor of any type would be useful as he is resistant to all attempts so far. Thanks for this though. Perhaps he would benefit, if we can get him to go. bill

As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. My son had no symptoms of strep. In fact, he has rarely been sick at all in the last several years. Probably supports the theory that in at least some of these kids the immune system is hyper active if not attacking the wrong things??? bill

Well - I can guarantee you I don't fully understand it! Some doctors have said that watching ASO/DNASE titers isn't all its cracked up to be either in that they are more indicative of past infections/response. Sometimes these stay high for months after an infection even in folks without all of this going on. The other thing I've heard is that it's not that PANDAS kids are not mounting a response, its that the wrong antibodies are produced and/or are just attacking the wrong things (like the brain). Of course, that does not fully jive with what he said (not producing antibodies to strep...) As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. As to copies, yes we request everything and have been for some time. Not sure why this one test result has been problematic.

Also PM'd you.

I am definitely not an expert but I would think that an immunologist would be the better way to go. Having said that though, we've had multiple neurologist and have seen one immunologist. Most of the neurologists were a waste of time while one was excellent (to a point). I do not have enough experience with the immunologist but everything seems to be PANDAS to him. It's not clear to me who comes out on top. I really think it comes down to the doctor. So I guess my thoughts would be to find a great doctor who can also advocate for you as needed. (I know - easier said than done.) bill

Bill - this is very interesting to me. Did your son have elevated ASO and / or DNASE B, and did he retest for those as well? He did when all of this started some two years ago long before Dr. B. entered the picture. The ASO and DNASE B were retested early October but for some reason, Dr. B.'s office has not provided a copy though I've asked for it multiple times. I'm pretty sure that we will be back up there before Spring is out; I will not leave without a copy.

Concur with others; Hopkins and Children's kept us down a dead end path for a long time as neither considered my son's neurological and behavioral symptoms part of the same. We wasted over three years trying to convince one and then the next that they were related...... We also have not found a single doctor worth seeing who "accepts" insurance. Dr. L.'s office files for us but does not accept it in the traditional sense. We have PPO/non-PPO options and often must be satisfied to get 30% back. bill

I am THINKING that he says strep pneumonia and the parents are thinking strep (as in group a) because of the "strep" in strep pneumonia. I can't imagine he is telling them this is their child's inability to fight off group A strep......being an immunologist, he HAS to know better. I think it is misunderstanding on the parents part 'cause we don't always know better. I hear this a lot actually (not just from Dr. B's patients)...parents thinking that the strep pneumonia titers are related to strep throat somehow...as mentioned, 2 totally different bacterias. There is no vaccine for group a strep. We may be getting it wrong but I can confirm that "he" is saying that our children are not producing antibodies to strep. "He" appears to be using the 14 strep p panel to confirm. My son had the 14 panel results going into our visit in October. "He" diagnosed him with active strep, prescribed 30 days abx and had him retested for the 14 panel step p at the end of those thirty days. The copy of the results we got had hand written notation "post." We have not had a follow up but based on my jumping to conclusions perhaps, count me as one of those who came away believing the same. I see your point though and frankly I was confused by what I was reading on line about the 14 serotypes and how this played out. In the meantime, he has diagnosed CVID and recommended IVIG (which insurance is currently denying). On an interesting tangent, we spoke with the Rogers Institute in Wisconsin this week to get a feel for their OCD program (intensive in-patient therapy). It will be interesting if insurance would be okay approving that at $700+/day for 45 days without giving IVIG a chance.....

I would be interested in your experience as well. Thanks, bill

I'm second guessing my doctor but imagine we may start mepron soon. Can anyone tell me why mepron (liquid) as opposed to atovaquone tablets? The tablets appear to be much cheaper. Are tablets not available in the U.S.? Using the information from Wikipedia, and if I assume a 1:1 ratio for tablets to liquid (mg:mg), the cost per 30 days for the tablets is less than $400. I searched but did not find an answer quickly. thanks, bill (Hmmm, seeing the info. regarding Artemesinin. Why not just try that?) Atovaquone From Wikipedia, the free encyclopedia "Atovaquone (alternative spelling: atavaquone) is a chemical compound that belongs to the class of naphthalenes. Atovaquone is a hydroxy-1,4-naphthoquinone, an analog of ubiquinone, with antipneumocystic activity. Its average wholesale price is about US$2.13 per standard 250 mg. tablet.[1] It is also manufactured in the US in the liquid form, or oral suspension, under the brand name Mepron[2], a 30 day supply of which (300ml), is about $1,600.00 without insurance coverage.[citation needed]"

Wow Bill, That is alot of medication how do u fit the probiotics in, I have a hard time. I hope you see good results soon, I completely understand the ocd issues. When my son gets worse it is impossible to stay calm and sane. He requires that I repeat the word ok to him and it can be so many times that I can't take it anymore. I feel so guilty about how I react but I just can't take it. I have3 children and they all are so needy, but, he demands things and if it isn't how he likes it when he likes it then he rages and gets so upset. I feel so sorry for him and all of us. It really makes living a normal life impossible. I can't go anywhere it's embarrassing. I feel like an awful parent because I know it's an illness. Fitting in probiotics has not been too bad. Our doctor thinks it's fine to take at the same time as the antibiotics. Of course I've read the opposite here . For some insurance, some we give with the antibiotics and some we fit in well after/before bedtime. As to your reaction - you are not alone. I have the utmost respect for parents who can deal with their child's mental illness with dignity. I am not one of them. We've had a tough week where I thought I would lose it (bad dad) a couple of times. We relented and increased his prozac dosage (back to 30mg) so hopefully that will help. We end up relenting to his demands to keep the situation under control which means we push back until we'll explode . Exactly opposite of what all of the experts advise but the experts are not here, we are. Did I mention - you are not alone. Hang in there. We have to believe this will get better. bill

5 years ago, my son had his first MRI due to dilate pupils and abrupt change in personality. All was clear (tumor ruled out) Last August, after being diagnosed with Lyme, my son had his second MRI. There are now 2 small lesions "consistent with Lyme." BTW - lesions are also consistent with other stuff and I am definitely not saying that MRI is a good diagnostic tool for Lyme. From what I've picked up though, it might be an indicator of long term untreated Lyme.

We have seen Dr. J. for a consult when we first learned of Lyme (and other). As others have noted, he is very thorough. Just me thinking out loud but I think that I would tell his office that you've had the test but not sure when the results will come in and then ask them if it would make sense to see Dr. Jones without those results. You probably have other blood tests that you can share? Dr. J. takes extensive notes so I would think that he can take the results into account once he gets them and include in his written recommendations. Worst case, they ask you to wait until May. Dr. J. did send us a follow up report. It took a couple of weeks but he did it. And I feel your pain regarding "...and no help from insurance." Just learned that our insurance company denied IVIG through Dr. B. because they did not complete a form correctly. Going back and forth we understand that the form Medco requires does not have a check box for "Common variable immune deficiency". Dr. B.'s office used other with the a diagnostic code..... Dr. B.'s office will have to challenge. This is the first year that our insurance has used MEDCO. We've never had problems before. bill Hi Bill thank you for your response. I did contact Dr. J office and they said most people come in not having blood work so I am ahead of the game. I just wonder its results are negative will I just be wasting money going to see him. I'm so confused, I just feel this is our last resort to get some help. We too have been denied ivig with Dr. B, we just had a phone conference with insurance and dr.b, they really don't want to understand it seems. They asked if my son had Pandas even though that's not what dr.b coded it as because he has failed most of the pneumococal titers. I hope they approve, next step is external appeal. It's a tough call regarding the money. For us, our son shares many symptoms with others here but has some that are not common. Two doctors referred us to Dr. J. because "if anyone has seen a case like your son, he has." For us, it was worth the trip to hear Dr. J. say "Yes, I have seen several kids like your son." (paraphrasing from memory of course) That was quit comforting. Dr. J. was careful to not promise us a full recovery but he felt positive that he could make our son much better. We are working with our local doctor who is learning and consults with Dr. J. when needed so we have not made a follow up appointment. I would not hesitate to make another appointment with Dr. J. in the future. That is comforting to hear that a doctor has seen the same case before; but I would rather hear that he will make my child well again. Although I have heard that and am still waiting for that miracle. So your pediatrician consults with dr. J? so who actually prescribes the medication? may I ask what your child has and how its being treated? my son has humoral immunodeficiency had high mycoplasma pnemonia, had ebv last year and we are waiting on igenex results. Thank you for sharing. We found an internist who is treating my son. She prescribes the medicine. As to what my son has, well - symptom wise: behavioral issues (anger/raging), generalized dystonia, dilated pupils, severe 'contamination' OCD, sucks at math (6 A's, 1 B+, 'D' in math last quarter), bathroom issues (only goes twice a day, three if we make him), limited diet. Think that covers the basics. Officially, PANDAS, Lyme bacteria, bartonella, babesia suspected. Dr. B. has diagnosed CVID, common variable immune deficiency and wants to do IVIG (so far insurance has denied). He had plasmapheresis over a year ago but before we knew about the Lyme. Current 'medicine' routine: Prozac: 30mg daily Minocycline 50mg X 1 daily Azithromycin 250mg X 2 daily Augmentin ER 1,000 X 2 daily Tindamax 1 tablet Fri pm, Sat am + pm, Sun am only B12 2,500mg periodically Vitamin D 2,000 IU periodically Coenzyme Q-10 200mg day Vitamin C 500mg periodically Florastor 2 daily (Saccharomyces boulardii, 250mg) Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B) Saccharomyces Boulardii + MOS 5B/capsule X 1 daily Son is 12 years old and 85 pounds. After 4 months, his left foot/ankle is relaxing and his eyes are less dilated. OCD/anxiety are through the roof. Of all the symptoms, OCD is by far the worse for us as a family. Therapies and even a stint at U Penn did not help in the slightest. bill

We have seen Dr. J. for a consult when we first learned of Lyme (and other). As others have noted, he is very thorough. Just me thinking out loud but I think that I would tell his office that you've had the test but not sure when the results will come in and then ask them if it would make sense to see Dr. Jones without those results. You probably have other blood tests that you can share? Dr. J. takes extensive notes so I would think that he can take the results into account once he gets them and include in his written recommendations. Worst case, they ask you to wait until May. Dr. J. did send us a follow up report. It took a couple of weeks but he did it. And I feel your pain regarding "...and no help from insurance." Just learned that our insurance company denied IVIG through Dr. B. because they did not complete a form correctly. Going back and forth we understand that the form Medco requires does not have a check box for "Common variable immune deficiency". Dr. B.'s office used other with the a diagnostic code..... Dr. B.'s office will have to challenge. This is the first year that our insurance has used MEDCO. We've never had problems before. bill Hi Bill thank you for your response. I did contact Dr. J office and they said most people come in not having blood work so I am ahead of the game. I just wonder its results are negative will I just be wasting money going to see him. I'm so confused, I just feel this is our last resort to get some help. We too have been denied ivig with Dr. B, we just had a phone conference with insurance and dr.b, they really don't want to understand it seems. They asked if my son had Pandas even though that's not what dr.b coded it as because he has failed most of the pneumococal titers. I hope they approve, next step is external appeal. It's a tough call regarding the money. For us, our son shares many symptoms with others here but has some that are not common. Two doctors referred us to Dr. J. because "if anyone has seen a case like your son, he has." For us, it was worth the trip to hear Dr. J. say "Yes, I have seen several kids like your son." (paraphrasing from memory of course) That was quit comforting. Dr. J. was careful to not promise us a full recovery but he felt positive that he could make our son much better. We are working with our local doctor who is learning and consults with Dr. J. when needed so we have not made a follow up appointment. I would not hesitate to make another appointment with Dr. J. in the future.

We have seen Dr. J. for a consult when we first learned of Lyme (and other). As others have noted, he is very thorough. Just me thinking out loud but I think that I would tell his office that you've had the test but not sure when the results will come in and then ask them if it would make sense to see Dr. Jones without those results. You probably have other blood tests that you can share? Dr. J. takes extensive notes so I would think that he can take the results into account once he gets them and include in his written recommendations. Worst case, they ask you to wait until May. Dr. J. did send us a follow up report. It took a couple of weeks but he did it. And I feel your pain regarding "...and no help from insurance." Just learned that our insurance company denied IVIG through Dr. B. because they did not complete a form correctly. Going back and forth we understand that the form Medco requires does not have a check box for "Common variable immune deficiency". Dr. B.'s office used other with the a diagnostic code..... Dr. B.'s office will have to challenge. This is the first year that our insurance has used MEDCO. We've never had problems before. bill

I'm not sure anyone can answer your question and be 100% sure but sounds like you are on a better track than before. BTW - what are (were) your son's prominent symptoms? I ask as my son has a lot of symptoms similar to many on the PANDAS and Lyme forum but still has some that do not correlate with others. He has been diagnosed with PANDAS, Lyme, Bartonella; Babesia is suspected but I'm not beyond questioning the results. Regarding myco p my son only had high results for IGG (1.35; ref. range < 0.9) suggesting he's been exposed but nothing else. I do not see a test for the IGM.....I'll have to bring it up with our doctor. Thanks for posting. Gives me more to think about. bill

Well - we've been lucky as my son has not experienced any real GI issues. Most of his can be chalked up to a very limited diet of basically bread, meats and sweets. We started on Align and Florister as that's what his doctor recommended. They were both pretty expensive. Right now we are giving him Custom Probiotics (CP-1) Acidophilus and Bifidus (50B) twice a day and Jarrow (non-dairy) Saccharomyces Boulardii+MOS (5B) three times a day. No science for us other than I think these are the main strains recommended. I do not remember the cost of either but both significantly cheaper than Align or Florister. Son is 12 and 85lbs. bill

Thank God for this forum and this thread. I have to make sure my wife reads this one. The behaviors I've read in this thread easily apply to my son!

Quick add - My son was on Zoloft initially (25mg) and when that stopped working moved to Prozac (down to 20mg); both low doses (son currently weighs 85lbs. but Zoloft started some five years ago. We see no benefit to the OCD. I should note that when OCD slammed into our life 2 years ago - that's when Zoloft stopped working. Both show(ed) significant benefit for aggression and behavioral. Regarding aggression, effects are immediate (within hours vice weeks) and when we've tried to stop or reduce, negative behavior increasing seen within a day. I add that because for us - it is clear that these medicines have an immediate impact, just not for OCD. BTW - son has Pandas plus Lyme & friends. Like to add that as so many of us are dealing with multiple bugs and I don't think any of us really understands how these combination infections impact our kids (or selves)....