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pathfinder

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  1. very mild and trasitional. head nodding, vocal sound( humming), blinking eyes. I have not seen them in few months. ( since starting lyme treatment???)
  2. Hello petie My son did his iVIGs at Crescent health center at Santa fe Spring near Norwalk. They offer home infusion option as well. ( they send a nurse to your home) Dr. L prescribed and forwarded it to them and they contacted us. My son was very non Lyme as per igenex tests but still pursuing lyme treatment anyway because of his high mycoplasmas P titer with bartonella positive testing result. ( not to mention high ASO titer)
  3. My son is also going for T&A in early Dec. I do not know if my son could be of any help as he is already 18.
  4. Hello pandas16 How is your TSO going? Can you share rTMS treatment information with rest of us? Since I heard that you are tabling rTMS, I started to take interest in that treatment and I found that there are 2 different rTMS treatments. One with ribbone shape that goes on front of head and the one with ice cream shape that goes on left side of brain. Which one are considering? Thanks pandas 16
  5. I also pray for your son's fast and full recovery. I am very happy that you came back to post. I was wondering about you.
  6. We are still doing TSO He hosted his 10th dose yesterday How are you doing with TSO?
  7. Thank you Beeskneemommy Would you say lowering ASO titer helped your son in anyway even with L& bartonella in the background? My son also tested positive for bartonella ( probably lyme but definite) along with mycoplasmas.
  8. hello everyone I have questions for you. My son was tested high on ASO titer (IGG not IGM ) about year and half ago at age 16. He had all the classical symptoms of pandas along with high titer so we went after pandas treatment aggresively with some success but some of his physical symptoms that were that of lyme and co so we moved on the that area ( lyme and co treatment is long term with wax and ween type of treatment so cannot declair success as of yet but we are at the right place) I am retabling pandas issue because our lyme dr ran my ds (now 18) ASO titer few weeks ago and it came up high once again. That is total of 4 ASO titers tests in last one and half yr with high as results. They are not teriibly high but high all the same. Beginning of pandas treatment ( HD IVIG+ABX) his ASO titer was 360 and next 3 tests was 300 to 320. Is ASO titer at this range means he had strep sometime in his life and his has antibody for it and he is just a strep carrier? Do we target it to come down to within normal range in order for one to declair victory over pandas? If not, I know mycoplasmas P titer has to come down before one can say he is winning the war why is it different for ASO titer? Can any of you relate success pandas story with lowering ASO titer or success story with high ASO titer? thanks guys
  9. Thank you all for your inputs but I will keep him with Cal doctors until I find someone near his school for now. He is doing well (knock on wood ) To Pandas16 How are you doing with TSO yourself? Will went down the hill with last dose (7th, I think) I was so so disappointed but he is doing better with current one. I have 2 more doses left and if I don't see improvement by then, I am thinking of stopping TSO.
  10. Hello WIlma What about giving seroquel at a different time than dr recommended or give her less than dr prescribed and build her up to it? As good of a dr he/she maybe but he does not know of every detail of your child so it is up to us to figure out details of how the medication is dispersed. It is like throwing balls to a wall to see if you can hit the bulls eye with given balls. Doctors are giving you the ball but it is up to you to target it at light spot and the right Pathfinder
  11. Hello Lyme people After agonizing and sleepless nights, we decided to send my just turned 18 hrs old pandas/bartonella/probably Lyme son to a college in upstate NY. He is leaving not only his home and family but comfort zone of pandas/Lyme doctors of southern Ca. (you all understand how uncomfortable and annoying it was to be seating in a doctors office who has no idea what pandas means or not believing lyme could cause ocd. I am looking for a Lyme doctor who also understands pandas in Rochester NY area. My son is starting his orientation tomorrow so we just flew in last night. He will go back to his doctors when he comes home for breaks but for my own peace of mind I would like to get some help from this area as well. Would any of you know of such a doctor in this area? We are at Geneva NY near Rochester. Thank you in advance Pathfinder
  12. Hello pandas16 I have 2sons, older one is a high achieving normal young man and younger one is with pandas but normal intelligent( He is not in your caliber in term intelligence but I think you are a remarkable young woman so no comparison there) So in many ways, my son's pandas case is very similar to yours and yes I have been looking for stem cell as a possible next step for my son even though it is a long shot at this point.
  13. Hello follow lyme people I want to update my ds's (18) progress with Bartonella battle. He had a very strange reaction to rifampin so after one and half month of using it we discontinued. Rifampin pros---- He acted very mature, aware, and calm. cons--- Occasional intrusive/grudge kind of OCD ( 2times a week, maybe), depression, and fainting spell. Because my dr and I got very scare of depression side rifampin effect we switched to Levaquin and he did Levaquin alone for one and half month. Levaquin---- no side/herx effect and OCD was less in intensity and frequency but a bit ADHD like ( once a week for 20 mins OCD, maybe) But because there was still OCD, dr added Bactrim for last 2weeks. Bactrim--- no side effect so far and OCD not seen yet but still sort of ADHD so I am thinking of adding diflucant back. He is definitely getting better but I feel there is a huge space before I can call it a victory. He would be perfectly fine one moment and then he would turn around and become very loud and bad mouthing about my touching his cell phone or his computer with thirty hands for about 20 mins or so and would act as if nothing happened again. His OCD has always been fear of germ which makes me think pandas/pit is manifesting in OCD as self protective way. I think I used to suffer watching my son suffering with OCD when he was younger but now I am suffering because I worry if he could stand alone in college come this Sept. He is improving but I am not??? I am OCDing????? Nevertheless, life is soooooooo much better as his OCD is a rare occasion versus everyday living condition before doing pandas/pit/lyme treatment. I am going to pursue the latest trend in OCD ( learned from this forum)with glutamine and KPU as well. (Whatever it takes, I don't want to miss the bus)
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