pathfinder

Darlene I was trying to PM you but your mail box is full. Is there anyway I can contact you in private? pathfinder

abx defiantly made my ds very tired ( he had this issue before but abx made it worse )so my ds's dr added very high dose of B12 and they are working wonders to my son's constant fatigue.( with green tea in the morning) Now about taking ADD/ADHD med, I don't see why you could not try it under doctor's supervision but in my son's case, ( His all pandas/bartonella started as ADD/ADHD like symptoms) one medication led to another and then the other and so on. ADHD meds ( concerta)amplified his OCD so we had to add zoloft like med and then in several years later zoloft activated his rage so we added abilify. It was a lot of work to figure out what worked and what dosage it worked and stuff and in the big scheme of thing, I feel that they did not help my son I would not advise it for long term use like my son but I absolutely agree with you as to why hold you son away from medication that could possibly help your son at his crucial learning stage. ( I don't think those meds damaged my son's brain either) pathfinder

Wow!!! May this article reach many families who are looking for answers. (I wish I read this article 10 years ago) Great job!!!! pathfinder

Pandas16 I am so glad TSO is working out for you as it is for my son. I just wanted to add that the reason Dr. Lin starts in a low dosage is that one might get sick if started in a high dose so his method is to introduce TSO gradually. Dr. Lin's patients are children so it is important to start at low to make sure young ones can tolerate them. My understanding is that TSO is not from Thailand but from Germany. A small Germany pharmaceutical company ( or something like that) is making them but since they can not get German government's permission to market them and sell them, Ovamed somehow took TSO to Thailand Government and got approval from Thailand and hence there connection with Thailand. I guess Thailand government is a lot more progressive than that of Germany. When I ordered TSO, they came from Boston. (????) Anyway I was under impression that TSO was made in Germany. Can you correct me if I am wrong here, Pandas16? pathfinder Pathfinder, Do you mind share a ball-park figure of how much it costs a month? And do you need a prescription? Thank you! You do not need prescription. If you are interested I could help you out in details. I don't think you can find many drs who would be familiar with this treatment anyway. My son could go up to maximum dosage but he is already doing good at half so I am going to stay there for now( $5000/yr) My son is an adult size ( 165 pounds) hence needing maximum. You don't have to spend all that money up front and I advise you to get a bottle of 2500 units ( around $400/or equivalent euro) and build it up in dose of what your child needs. Here is the website for TSO. You can find a lot of answers there. http://www.ovamed.org pathfinder

Pandas16 I am assuming you are asking about my son. No he did not respond well to steroid burst and never did anything related to immune treatment except IVIGs. He responded very well to IVIGs. I always found your posting very educational as my son has been dealing with food allergies including all nut groups, gluten, and corn. We tested about 12 food panel and he was allergic to all of them so TSO made sense for us. pathfinder

Pandas16 I am so glad TSO is working out for you as it is for my son. I just wanted to add that the reason Dr. Lin starts in a low dosage is that one might get sick if started in a high dose so his method is to introduce TSO gradually. Dr. Lin's patients are children so it is important to start at low to make sure young ones can tolerate them. My understanding is that TSO is not from Thailand but from Germany. A small Germany pharmaceutical company ( or something like that) is making them but since they can not get German government's permission to market them and sell them, Ovamed somehow took TSO to Thailand Government and got approval from Thailand and hence there connection with Thailand. I guess Thailand government is a lot more progressive than that of Germany. When I ordered TSO, they came from Boston. (????) Anyway I was under impression that TSO was made in Germany. Can you correct me if I am wrong here, Pandas16? pathfinder

Do you think the TSO tx is helping his gut problems? How much does it cost? I'm wondering if a lower dose would be needed for milder cases (eg PANDAS) vs. kids with full-blown autism? Hello EAmom I do not remember exactly how much it was for a bottle of 2500 unit but I believe it was around $400 a bottle. My son is an adult male in weight and size so he would need maximum dose which is 2500 in every 2 weeks. He is currently taking only half of it and it already made a huge differences. My son had a long history of gut problems and nothing ever helped except TSO so I definitely think it is worth a try. My son is not autistic or severe pandas and I don't think it has anything to do with dosage of TSO. One's weight and size is what counts here. You start TSO in a small amount, probably in 100 units and then in 2 weeks, you go into 200 units, and then to 300 in another 2 week and so on until you reach your targeted dose. I do not know what your dd's targeted dose might be but you can figure it out as you move up the dose a little by little in evdery 2 weeks. ( Dr. Lin suggested that my son may have to go to full dose but he left it to me to figure it out) I think I am going to have my ds stay on at 1250 for next several months as it is already doing a fantastic job. ( My son weights 165 pounds ---maybe your dd needs half of my son's ?) TSO was making differences in my son by around 3rd weeks. ( 650 units) You buy a one bottle of 2500 units and it will give you enough amount to see if it is working for your child. EAmom, you helped my family so much when we first came to this forum looking for answers and I am very grateful. pathfinder

Hello Christianmom My ds has Bartonella via Quest lyme co infection panel. ( We found this out after our corresponding) I believe that means he has Bartonella 99.999% but I never saw classical bartonella rashes on him before and he has had plenty of rashes at any given time of year. My son is being treated with Rifampin right now but not doing too well and so I was thinking of your ds as he did not have good reaction with rimfampin as well. ( Am I remembering this correctly?) But knowing he has Bartonella, treatment is not an option but necessity so we go forward. pathfinder

Thank you everyone You guys are absolutely amazing. I have regained the strength to forward after reading your posts. My ds got back on his TSO today ( after 2 weeks break) and I am hopeful that Bartonella will be gone before he starts college on Sept. I hate Pandas but I think I prefer pandas over Bartonella. pathfinder

OK Pandas people My ds 17 is doing fantastic on TSO therapy. Ds started the treatment only 3 months ago and he is still at only half of his targeted dosage which is 2500 but his constant gut problems ( allergies---known and unknown--- causing skin rash, gas, diarrhea ) gone. OCD is minimum. Expensive but worth every penny. We are planning to stay on with it.

My ds 17 is on 5th week with rifampin (plus agumentin) with strange herxing like behavior. He had mostly bad days with depression/weeping, sweats, and fainting spell on first 2weeks then his physical symptoms disappeared. I am noticing that his strange depression/mood swing is continuing with less frequency. I would meet a wonderful, mature, well balanced, and caring teen for 2-3 days and then I would have some very bitter, full of resentments, and sad teenage next day(almost always in the evening). We could switch to Levaquin but I don't want to trade one set of problem with another so I am asking you wise and experienced people for your opinion. Can herxing come in an inconsistent wave length? Why is this happening mostly at night? Is it unusual to have only psychiatric symptom as herxing? Thank you pathfinder

It has been about 4weeks since ds started rifampin (on top of agumentin)and just getting off the worst herx period. ( in my son's case depression/weeping every night) I was told by 2 doctors that some vitamins help herxing so my ds has been on following vitamins for last 3 days Vitamin B6/B12 CoQ10 Magnesium Mega Vitamin C and all herxing symptoms almost went away. ( either it was time for herxing symptoms to go away or are vitamins helping with herx ?, I do not know) I was ready to give up on rifampin but we are going to stay on and fight till the end.

Oh! If you have problem with yeast, you don't do SSRI. Yeast activates SSRI and together they take you to places you don't want to be. ( same as alcohol and SSRI) pathfinder

Hello Emerson I feel that the more I learn about pandas the less I know about it and it is good thing you brought this subject up because for pandas children it is essential that we have all the options available checked and studied . One could have all of above or none of above symptom and yet have same dx as pandas. My son W had been on SSRI for 7yrs until about 18 months ago. When he was young ( like most of young pandas in this forum) getting day by day without something like any lengthy meltdowns, phone calls from teachers, or getting homeworks done were most important things in his life so we stayed on those meds believing they were helping him. They did help to some extend but benefit did not last so we switched among those med, same combinations but different names frequently and in the end he tried all of ssri at one time or the other. This is my own opinion of ssri medication use on pandas kids ( at least some pandas kids === like my son) SSRI was helpful only in short term use. ( we invested so much time looking for right dose/combo not knowing there is none and it simply did its job) they made my son very lazy. ( he did not care about his grade, he did not care what he wore, I could go on) I think SSRI made his conscious dull along with his OCD ( He would say insensitive things but he would not know or care of consequence) My ds became attracted to some things of dark and shocking nature because he did not find any regular activities worth of his attention. My son's symptoms became more complex and difficult to deal with time due to long term use of SSRI and his overall demeanor did not change. Upon discontinuing SSRI, above symptoms disappeared.( regrets came instead) I think SSRI meds are ok for pandas kids as long as they are used as temperately measurement but then again problems occurring while weening this med makes me wonder if it is even worth in first place. Emerson, you are an incredibly bright and nice girl any mom would proud to have as a daughter and I wish you the very best. Pathfinder

My ds's lyme test is still being processed (not that I would know anything anyway ) but I read something with band 41 in pandas forum. Maybe you read it already but here you are http://www.latitudes.org/forums/index.php?showtopic=13364

I just found this web page which describes herxing symptoms of antibiotics use in Lyme and co. The Jarish Herxheimer reaction is seen when antibiotics are having a therapeutic effect. There can be a worsening in the symptoms, which may include the periostitis, and the psychiatric and cognitive symptoms. Some patients become very impulsive, aggressive, depressed, and suicidal during a Herxheimer reaction and may require close monitoring during these times. from http://www.mentalhealthandillness.com/tnaold.html I suppose it means my ds's depression is from rifamin herxing and the treatment is working. pathfinder

Can you please all come back and answer one more question? My ds has a significantly swollen gland on his neck today. I am thinking rifampin is fighting bartonella in full force. ( I put him on full dose starting yesterday) Do you think there is other reasons for ds's swollen lymph nod other than I mentioned above? We could not do detox while away from home but we resumed benito clay (thank you sfmom) regime yesterday and I believe it is doing its job very well. thank you pathfinder

This is not my own personal experience but I was at a pandas support group meeting about a month ago and one of the parent shared that her dd was doing really well on Spironolactone.( like wow kind of well) We did not have enough time to go in to detail so I cannot share more.

Thank you all All of my ds's symptoms were listed as rifampin 's side effects, one as more serious than the others but side effects all the same. I took him out to lunch today and again watched him very closely all day ready to rush him into emergency room if he were showing any sign of serious side effects but he was doing fine other than excessive sweating. I wonder his strange behaviors ( depression and weeping )were due to long plane ride flying from LAX to Chicago and to Rochester back and force within 5days. I read it somewhere that lyme gets stimulated and activated on high altitude. It seems that the worst herxing/side effect period is passing. ( crossing my finger here ) thank you for your help pathfinder

My ds17 has been on Rimpapin for last 10 days for Bartonella. I know I am going to give it a full chance and ride it out as much as I can but my ds is really suffering since day one of starting this medication. My ds had many symptoms of pandas+bartonella over the years but one thing he did not have was depression( he forgave himself very easily while he could not do that to others hence holding grudge OCD )but since the Rimpapin he started to express his regrets over how he had lived his life. He wished he could go back in time and relive high school years but he also said that he was feeling that way because he was actually getting better. I had nothing to add there as I felt that it was his due to pay growing pain which he missed out by focusing on OCD ( my little revenge to all his OCDs) but he took a bad turn in couple of days into Rimpa. He became very sad and depressed and I still did not make connection with Rimpa and his emotional state until early this week. He and I went up to NY to attend one of his prospective college open house last few days and since I was with him almost 24hrs I noticed that he was sweating a lot even in chilly up state weather and his eyes sometime turned orange color. He hyperventilated and almost fainted 2 times. orange urination orange eyes/ red face sweating, depression ( regrets), and weep in that order. He said that he could not take this misery anymore but when I asked him if he wanted to stop Rimpa, he said "no" he wants to get better so he would not have another regret in next 4 years.( good sign, I think) Is this that infamous herxing I often heard about? How long does it last? He is on only half of his targeted dose and I am afraid to make it full strength. I have Dr appt in next Monday but I am too anxious to wait so I would appreciate your input very much. If that was herxing, does that mean this med is right for him? How do we know differences between herxing and regular medication side effect? thank you in advance

I am thinking of removing my ds17's tonsils but they are almost invisible so dr advise against it. I am still debating. Wilma, I am very happy that you are getting your answers for your dd. I wish your dd complete and fast recovery.

Thank you lyme people I really am mad now. My ds had many of Bartonella symptoms on earlier onset of pandas at age 7-8 but after many testings, doctors told me to ignore them as ADHD kids tend to have a lot of irreverent somatic complains. He was gasping for air, shooting pain on his shin ( dr said growing pain) , sole pain ( I used to massage every night), and rashes all over his body ( for last 9 years almost every day of his life) I was right pursuing lyme and co after all. ( my 2 MD sisters discouraged Lyme testing all along too) I have some more questions. Does agumentin help lyme/bartonella? My son had high ASO titer/high Mycoplama and pandas treatment (IVIG+agumentin 8months) helped him tremendously is lyme anyway connected to yeast? --does treating lyme/co helpful to treating yeast?--does lyme/co raise eosinophil count? We are aiming for 100% Thank you all PS SF mom My son was tested for Bartonella and the result was positive as per Quest. I just did not have the paper in front of me so I called dr's office and confirmed it.

I have been studying lyme and co for past week but I still cannot come up with answer as to how is bartonella symptoms different from Lyme or any other co-infection for that matter. How is bartonella symptom different from others? Which one is consider the worst (symptom wise, hard to get rid of wise)? thank you in advance.

pathfinder! -- can you elaborate? were you on that other post about probiotic and cytokines? it made me think my son's inattentiveness may be due to new probiotic. perhaps a d-lactate reaction. i've stopped it about a week now but no real change in behaviors. thanks. Here is the tread by Pandas 16 that talked about this issue http://www.latitudes.org/forums/index.php?showtopic=13149 My son was doing well especially concentration area post IVIGs but 3weeks ago he became very restless with tic. That was very significant thing to me as his tic was not really a problem for him before IVIG. After following pandas 16 probiotics tread, I realized my son became ADHD like after changing to different probiotics. I put him back to his old probiotics and sure enough ADHD/tic gone.( one week) My next project is to find best probiotics for him.

Pandas 16 I am sure you did not offend anyone. How are you doing? I just want want you know that my son's hyper kind of behavior is gone as soon as I changed his probiotic. Thank you so much. Pathfinder