Bill

I think 5 months is a long time to not see any real improvement. Just wondering if it's time to try a different combination of ABX. Sometimes the doctors seem a little too content to just continue the same treatment. There is nothing wrong with pressing your doctor for a change unless they can clearly articulate why you should not be concerned about this lack of progress over 5 months. Having said that - we measure progress best in 6 month increments. That is, it's hard for me to see my son's progress without looking back six months. Sometimes this is just really slow. Best of luck, bill

I think your approach is realistic. Years ago, we were afraid that our son was ODD though he was never formally diagnosed. Everybody loved my son at school. Everything at home was borderline nightmare. I remember being totally scared by what I read so my heart really does go out to you. Fortunately for my son and us, SSRIs managed to control his anger long before we discovered PANDAS/LYME/PANS/MCIDS/etc. Today - we gave him what we hope is the last dose of Prozac that he will ever need! This is 18 months into lyme treatment and 4 IVIGs down. Guess I just want to say that you should continue to have a good deal of hope as I'd be willing to bet that the behavior is the result of whatever is causing her illness - whether strep, lyme, coinfection - yet to be discovered. But - you will figure it out and reverse this! Good luck and hang in there. bill

My son started IVIG approximately 10 months after starting treatment for Lyme/bartonella. Based on what I had read on this forum, it sounded like a good idea to wait until the Lyme/bart had been treated for a while so honestly, we drug our feet for several months regarding the IVIG. Not sure how much of a difference it made but to date - and my son just completed his 4th - all IVIG treatments have made a positive impact with little regression in symptoms. Generally we see more ticcing and hand/arm shaking for a few days; after one the dilated pupils came back for a couple of weeks but overall - progress after each one. Because of insurance, we have not been able to return every 8 weeks as the doctor would have liked but - and my son seems to be an exception here - he did not backslide even 16 weeks out from IVIG. Lyme treatment (ABX plus supplements) started end of September 2010 After IVIG #1, June 2011 - greatly improved mood/behavior IVIG#2, September 2011 - greatly improved performance at school (including math) IVIG#3, November 2011 - slight improvements with physical symptoms IVIG#4, March 2012 - another leap forward in mood, improvements with physical, too soon to tell on school OCD continues to hang on but ever so slooowly improving as well. My son was being treated for Pandas for the year prior to Lyme diagnosis and had PEX in November 2009. Neither the Pandas treatment (ABX) or the PEX had any substantial impact though I suspect it was slowing down (stopping) the progression.

No matter which side we fall on, we are all praying together. bill

Thanks for the post! I agree with and respect everyone's opinion but lean with LLM on this one. Doctors who are helping us now are out there on their own. There are many doctors who won't touch PANDAS because of the controversy. If this allows more doctors to feel comfortable treating even a subset of our kids - that's great as it allows the leading edge to stretch farther and treat even harder cases. More doctors perhaps recognizing and treating earlier should also reduce the number of severe cases. Wouldn't it be wonderful if doctors were diagnosing our kids. I noted they also talked of a registry. "There is also broad agreement on the need for a “centralized registry” that will enable the research community to analyze evidence from studies that will eventually pinpoint causes and treatments. Such a registry is currently under development by members of the International Obsessive Compulsive Foundation (IOCDF)." That's awesome as it will (might) put the broader symptoms and experiences out there for the researchers and medical community to see. It's going to be really hard for them to not keep pressing forward with the evidence that comes forward. Heck, they could start here. IMHO, my 2 cents, ...

"If your child is on SSRI's can you please share your experience with ramping up - how long/what dose 'til you noticed a change? My understanding is that they only work about 50% of the time, and if one doesn't work, then you move onto a different one to see if that one will work....could be a very long time before I know if there is a type and a dose that works for DS I fear..." My son's response to SSRIs is atypical. We first started him on 12.5mg Zoloft at age eight, not sure of his weight back then. We saw a positive reaction within 2 hours. This was for uncontrollable anger/rage issues though. After several months, we had to raise it to 25mg where it worked for the next 3 years. When it failed, it failed spectacularly. Took us several months and multiple prescriptions to find out that prozac worked. It was 1-2 days before we were confident that it was working (again for raging only). OCD hit my son 3 years ago - same time the Zoloft failed (all connected somehow I'm sure). Neither the SSRIs or all the other drugs thrown at him seem to impact the OCD. Needless to say that most doctors don't believe us when we tell them how quickly he responded. I did run across an article about hyper-response of some individuals to SSRIs though, guess my son is one of them. bill

The test results seem pretty normal to me based on our experience and many others on this forum. Positive results are great; negative results seem to be pretty meaningless. Based on my experience, Dr. J. and any other LLMD will recommend continued treatment based on symptoms. He is very aware of the relationship between lyme/bartonella/babesia (if you test positive for one - probably have others). Six months is a long time but in the world of lyme, seems like we are talking about years in many cases. I get the sense that it's important to treat things in the right order - but - I'm not sure what that order is and whether or not it is the same for every person. I don't believe anyone really does at this point. bill

Someone on this forum PM'd me a while ago who believes (or their doctor believes) that IVIG may be masking results. We are on the Lyme + Pandas route ourselves. My son's last IGENEX testing was clear across the board (except for 41). He will soon be going for his 4th IVIG. We have seen some positive results every time but not for his OCD! Our LLMD is a big believer that Bartonella is a leading cause for OCD. We've been treating the Bartonella and lyme for over a year so one would think it would break some by now! If I'm being totally honest with myself though, he has improved, just not as much as I would have hoped in regards to OCD. BTW - quickly read some of your older posts. SSRIs really helped my son's raging but do nothing for his OCD. OCD was one of his later symptoms to occur and was the one that got us on the Pandas route. A couple of weeks ago I hit my son with a Cat's Claw plus artimisinin combination that caused temporary trichtotillimania. Had to back off that quickly! Anyway, have restarted the artimisinin with guidance from our doctor as well as switched from tindamax to flagyl on weekends. Trichtotillimania has not returned but some of his anxiety is getting kicked up (picking his finger tips until they bleed) so we are clearly kicking something up again. The artimisinin is for babesia (theoretically anyway). He never tested positive for Babesia. Could be the flagyl alone but one wonders. I wanted to try this as something seems to be holding him back from a complete recovery. Guess what I'm saying is that I have no faith in any of the test results these days. A positive is great (in that weird sort of way only us on this and similar forums understand) and a negative is meaningless. Feels like a guessing game once the standard treatments don't fully work. No help in my post I know.

Using both for my son (103 lbs). Just restarted the NAC. Son's liver levels have always been fine so don't know if this helps or not. I've not notice if it helps his OCD or anxiety but his journey has been a very slow uphill improvement. We have to look back 6 months to realize the gains he's made. NAC 600 mg twice daily Milk Thistle 250mg standardized to 80% twice daily

Just some additional information from Burrascano's paper "MANAGING LYME DISEASE, 15th edition", September, 2005 Page 6 of 33 "Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value. Oral preparations are acceptable for maintenance, but those with severe deficiencies need additional, parenteral dosing: 1 gram IV or IM at least once a week until neuromuscular irritability has cleared." Further in the document: "MAGNESIUM (required) Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (“Mag-tab SR”, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on “cal-mag”, calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary."

Son tested positive originally.

My son was diagnosed with Bartonella and our doctor is in favor of providing magnesium. I stopped the last time we ran out as I was not seeing much difference but my son has asked for it as he's been ticcing lately. Restarting tonight in fact. Our doctor follows the theory that you need to give the body what it needs. The bart may get most of it but perhaps the body gets some that it would not have otherwise. BTW - the same discussion has been held regarding vitamin D and lyme. Our llmd believes it's better to provide vitamin D to help the patient there as well. Bill

We've used magnesium in the past and will be starting it again mainly for tics. I first started it after reading Burrascano's paper "MANAGING LYME DISEASE, 15th edition", September, 2005 Page 6 of 33 "Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value. Oral preparations are acceptable for maintenance, but those with severe deficiencies need additional, parenteral dosing: 1 gram IV or IM at least once a week until neuromuscular irritability has cleared." Further in the document: "MAGNESIUM (required) Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (“Mag-tab SR”, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on “cal-mag”, calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary." I just ordered another bottle myself as my son has started tic'ing a lot lately and specifically asked for it. We stopped previously as I could not tell if it was doing anything or not. The "SR" in Mag-tab SR stands for sustained release (slow release) and are less likely to cause diarrhea.

Our doctor has stayed with azithromycin and minocycline to treat both the lyme bacteria and bartonella. Up until last week, we also added tindamax on the weekend; just switched to flagyl. Believe that's just for the lyme bacteria though.

I agree with tpotter and we also act as the coordinator. In cases of disagreement, we make the best decision we can. To keep it a little cleaner though, I have designated one doctor as the official lead in my son's care. Dr. J. is for consult. Dr. B is providing the IVIG so the only decision there for us is whether or not it's worth it and not to add to much at a time. A fourth is our psychiatrist who just helps us monitor the psychological angle and drug interaction. The doctors all know who we are working with and that I am arriving with all of the latest information from the others. At the end of the day - they all really do understand the road we've been down and understand that many of us now proactively take the lead for our child's care. The good ones do not get offended! bill

The one week update - he is still admitting to some pulling hair. Four today. So it's not stopped but at least the bald spot is not getting noticeably larger. And to all who said "Cat's Claw," our doctor agrees. She may have mentioned several times about the dosage I was giving him . I've stopped of course, will restart the NAC and add methyl folate as soon as it arrives, wait another week and then restart just the Artemisinin using a 2 week on 2 week off pulsing strategy working from 100mg twice a day to 400mg twice a day. We will just hold off on the Cat's Claw for now. Now here's the Friday night mystery to share. He has a night time routine that includes time on the toilet and then his shower. Showers have been down to 10 minutes for a long time but toilet time stays 30 minutes plus. Over the last couple of months, he's had maybe one period of time that lasted for several days when toilet time has been 25 minutes or so on average. Since the hair pulling last Friday night, toilet time that night was 38 minutes. Somehow we missed recording Saturday night. For the last 6 nights including tonight - his toilet time average has been 16 minutes with a range of 11-18 minutes. This illness has a weird sense of humor. And through it all - his mood has remained extremely positive. BTW - I don't read all the messages but what I learned by posting my son's experience and talking to our doctor is that trichtotillimania is not an uncommon occurrence during treatment for neurological lyme (I'm lumping everything under the neuro lyme term of course). The good news is that I got a consensus that when caused by "lyme" (or whatever buggie actually causes it), it seems to be temporary. This is very good news as non-lyme (traditional?) trichotillomania is considered very difficult to treat. I remember when we thought our son was trending toward ODD (oppositional defiant disorder). Same scary stats - very hard to treat. But - we've found that it is resolving with treatment for lyme. At this point - it it 100% under control. I won't say resolved until he is off prozac completely though (10mg to go). Just wanted to post that for anyone new to the site. While our kids display some really scary psychological symptoms - they appear to be treatable with time and the right treatment. So don't get too freaked out by what you may read on the Internet for many of the psychological disorders experienced here. It seems our kids respond positively with time and proper treatment. (me knocking on wood now) bill

A Therapist will probably try different size pencils, rubber pencil grips, different holding techniques, etc. Some of these you can try now. OT might help but it did not in our case. Part of that was OT was provided prior to proper diagnosis. Part is that my son was on the decline during OT. Big part is my son just didn't care enough to try. I would say that much will depend on your daughter's attitude. bill

Thanks so much for your reply! I wasn't really leaning towards the Cats Claw as I didn't recall this being particularly strong in the capsule form. Your post is a good reminder to me though. Hope you are doing better! bill

We do not fit the last 6 months criteria but when this started years ago for my son, movement disorder was a very large part. Sudden depends on your definition though. My son had what I guess could be called a slow ramp up with noticeable symptoms in the summer time frame (years ago) to holy crap he's going to need a wheelchair if it gets much worse by February. Diagnosed for years as generalized dystonia. That's my long winded way of saying "Whatever this is about, I would love to hear the outcome!" Thanks, bill

I included a brief history for folks below. I know that I can not keep parents, children, and the symptoms straight. (Overall a very long tedious post!) So he's been doing pretty good making sloooooow progress. But, count our blessings that he's not shown any one step back issues. Sure, OCD moves around like water in a squeezed balloon but overall - and if we look at it in 6 month increments - still moving forward. And then he came home Friday (February 10th) with a bald patch on the top of his head. He finally admitted to pulling his hair out. We watched him all weekend, seemed fine. Deep breath and hope it was a fluke. He came home today with the bald patch larger! This is a new symptom. He has picked the skin at his fingertips relentlessly for years but never hair. My mistake in making too many changes recently to make sense of it. Prozac was reduced from 20mg to 10mg 13 January. Added Cat's Claw at 500mg twice daily January 27th. Did Artemisinin at 100mg twice daily for a few days and then read that it should be cycled at higher doses so went to 300mg twice daily February 7th. Had added NAC at 600mg twice daily at the end of December. I stopped the Artemisinin Friday night as planned. I stopped the NAC Saturday morning. Tonight, dropping the Cats Claw. Call is in to the Psychiatrist. My self analysis thus far: I do not think it was lowering the Prozac. Prozac controlled his anger - never touched his OCD or anxiety issues. His anger has not increased with lowering the dose so I think that's a good sign. I don't think adding the NAC now almost 7 weeks ago would be causing this. If anything, NAC is one of those things that's been used to treat Trichotillomania (though success is questionable). So that leaves the Cat's Claw which I added for Lyme and the Artemisinin that I added for babesia. He's not showing positive for lyme bacteria any longer (ABX for some 16+ months now) but I thought that I would add it just to see if it stirred something up. In hindsight - I'm not feeling too positive about that now. He has never tested positive for babesia but, something seems to be slowing his progress. Everything I've read suggests that Lyme is difficult to "cure" if babesia is present. So why not, throw something for babesia at him and see what happens. I was looking for sluggishness, fever, a white flag over his head with the babesia calling for a truce.... Again, not feeling real positive about that idea now especially now that I realize I changed so much in so short of a time. I've gotten complacent given his general lack of response to anything. And of course I could be completely wrong. The Trichotillomania may not have anything to do with any of the above. It could be just another wonderful symptom my son will have to deal with which for him means trying to ignore it or making excuses for it (OCD is still his best friend). Well, we already have a doctors appointment (LLMD) this Wednesday. IVIG is now approved again; next appointment is 26/27 March. Medicine and supplements prior to this: Prozac 10mg daily Minocycline 50mg X 2 daily Azithromycin 250mg X 2 daily Tindamax 500mg tablet Fri pm, Sat am + pm, Sun am only Methyl B-12 2mg daily Vitamin D 2,000 IU daily Vitamin C 500mg daily daily Milk Thistle 250mg standardized to 80% twice daily Artemisinin 300mg twice daily through 10 February CoQ10 200mg X 2 daily Vitamin E 400 I.U. Cat's Claw 500mg X 2 NAC 600 mg X 2 Probiotic Several (Acidophilus + Bifidus, 8B) Saccharomyces Boulardii + MOS 5B/capsule X 1 daily (Probiotics vary) In addition to the below, my son does not show obvious reactions to changes in medication, treatments, or supplements like many here. He tends to just plug along making very slow progress. I'm here for my son. Raging for several months when he was four (2001). Raging again at 7 plus unusual gait, dilated pupils, anxiety, and general loss of fine motor movement. Diagnosed with dystonia at age 7. Neurologist ignored the behavioral changes saying they were not related. Every 18 months or so behavior would get a little worse and shortly thereafter so would the Dystonia. Eventually diagnosed with generalized genetic dystonia with that and the psychiatric symptoms being treated separately. There is no dystonia in either family. Doctors ignored our pleas to look deeper for years. You guys know the story. Severe OCD when he was 11 brought us to the world of PANDAS. Plasmapheresis six months later had no impact. Six months later, he tested positive for Lyme and Bartonella. The doctors disagree on how long he's had Lyme. We are now into heavy ABX treatment starting 10/2010. His pupils are sometimes normal! Some of his dystonia is less. His tics are greater. His OCD is relentless. But - we are hopeful and thank everyone in these forums. May 2011 - Pupils appear normal more and more often! Dystonia is worse. Tics are better. OCD/anxiety/behavior have all been improving but very slowly and not without some push by his parents! Math scores went from a 'D' in the second quarter to a 'B' in the 3rd quarter. He did math homework the other day by himself - perhaps I'm dreaming? His reading has never been affected by any of this. He does not herx and except for his eyes, all of his improvements could easily be attributed to changes over time. His eyes were demon eyes (Supernatural fans will know what I'm talking about) for years. And now - they are the prettiest blue. So, we continue..... IVIG on 27/28 June 2011. Mood and behavior - already pretty good - improved immediately. Unfortunately, not much else to write about (7/17/2011). OCD seems to be oh so slowly receding but can not really attribute that to the IVIG. 16 October 2011: IVIG (2nd) on 13/14 September 2011. Nothing really to report after a month after this 2nd IVIG. OCD is a little worse. I suspect the stress of school but who knows. No discernible progress regarding dystonia but son reports that it is easier to write and for longer periods of time. Eyes remain good. 21 December 2011 IVIG #3 was on 16/17 November. Saw some regression in behavior but nothing really notable. Suddenly realized about two weeks ago that he can extend both arms in front palms down and up - Something he has not been able to do in several years. His pupils are becoming dilated again. We stopped the augmentin in mid October to get his bowels under control. So, pupils dilating again could be because of dropping the ABX or latest IVIG. Overall, still improving slooooooowly. Pupils recovered and are now normal again. 8 January 2012 IVIG #4 is (was) scheduled for next week. Received the insurance denial yesterday even though they list variable immunodeficiency as being covered. Told my son we might not be going figuring he'd be happy. He was not. Why? "I think it's helping." !!!!!!!!!!!!!!! Pupils are returning to normal. Still slow progress. We hiked on New Years day. Not far but up and down a small mountain; maybe 1.6mi round trip. His walking was none worse for it. He is also doing 80% of his shower by himself. He's been a little "mouthy" but in the friendly way. We think his prozac is too high and are trying to reach his psychiatrist to see about going down to 10mg. 2012 is the year we take him off SSRIs - my hope. 1 February 2012 Straight A's for second quarter - including math. Dropped to 10mg prozac daily and continues to do fine. IVIG is approved again. Next appointment is 26/27 March.

My son has been diagnosed PANDAS and Lyme. We do not live in CT. He is (was) doing IVIG at 1.5g/KG total over two days. So for my son, that equated to 60 grams given thirty grams a day. Dr. B. diagnosed variable immune deficiency. I think that this was based on very low strep pneumonia panel (14 serotype) results (10/14 were very low) and total IgG serums (low). Interestingly, we just got denied by insurance for a 4th IVIG and in the letter from the insurance, variable immune deficiency was on the approved list. I suspect that they want more tests run. Son is scheduled for total IgG serum blood test this weekend. Dr. B. relayed that you can't go by the pneumonia panel results once IVIG has been administered though. During our last visit, he was also referring to son's Cunningham test results which were high for the anti-Lysoganglioside anti-neuronal antibody titers. Caveat - I may have all of it backwards as when I just looked back through some of the old blood work, the total IgA and IgA subtypes values were low as well but I don't recall those being point out.... We have not tried having the procedure done locally. I did talk to a few doctors including two allergy immunologist who quickly referred me elsewhere. It seems that Dr. B. is one of the few who take the immunology part of their training seriously.

I'm not lyme mom but thanks for the bump. I had forgotten about this. I'm so used to reading about promising things that never come about I don't even bother to try to follow them anymore..... So has anyone had this test? What were the results? Is this test what it promises to be? Never mind, just saw the other thread. thanks, bill

My son was 7 when we first noticed dilated pupils. With time, his pupils were pretty much dilated all of the time. As I remember reading, many PANDAS kids are sensitive to light - I presume because of the pupil dilation. Not only were my son's pupils not reactive to light, he had zero light sensitivity. None of the doctors knew what to make of that. His pupils are pretty normal now. He's the only one in the family who does not need glasses or have any vision issues. He's close to 14. (Many PANDAS kids are also sensitive to sound. In comparison, the louder the TV, the more my son liked/likes it. His hearing tested fine.) My only thoughts are that it does not sound alarming. Perhaps he/she has some allergies causing light sensitivity? Worth keeping an eye on (no pun intended) though.

My son is scheduled for IVIG #4 there on 16/17 but we just got the insurance denial letter today. We'll have to wait and see if we can get that reversed this week. (grumble grumble) bill

Last I heard, they were shooting for around April or so, but that may have changed by now. Maybe email or call her lab, and see what they say. They may have a better idea. Whoa - guess I missed all of that. Where can I go read about Dr. Cunningham's new lab? I did a quick search but nothing came up. The community needs her research!