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Everything posted by pathfinder

  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. Nancy Thank you for posting. I visited their website and Found out that our pandas doctor is on board with this protocol as well so I am thinking of making appointment for my son.
  3. Nancy Thank you for posting this. I am so very interseted in this theory. Would you mind posting your list of supplements/ Try to do a bit of short cut here by borrowing your protocol. My son's biggest emeny has always been ADD/ ADHD and nothing has been helpful in that regard. I used to think it was OCD that was causing add as brain was focused in wrong thing in life but even with his OCD being addressed with pandas/lyme treatment, ADHD remains as strong as ever. Thanks in advance
  4. 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)
  5. 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.
  6. 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
  7. 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.
  8. We are still doing TSO He hosted his 10th dose yesterday How are you doing with TSO?
  9. 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.
  10. 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 u
  11. 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.
  12. 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
  13. 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
  14. 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.
  15. 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
  16. Hello Priscilla I am so very happy that your dd is doing well. Hope to see in one of these meetings in OC.
  17. My ds's pandas dr recommended moxxor for my ds as well but I just never got around to it yet. ( too much going on with too many meds and suppls) Keep us updated with how your dd is doing on moxxor. We might have same pandas dr?
  18. Hi Philamom My ds used LDN for 3months about 2years ago. Only thing is did for my ds was giving him very vivid and scary dreams then it made ds very agitated so we discontinued. My dh is diabetic t2 so I had him on LDN with ds at the same time and pretty much same results.
  19. Of all that happened to my ds, I am sure of one thing that is all his problem started with strep and augmentin/IVIG really helped us to see what was going on with my ds. I also believe that if we did not treat that chronic strep with those treatments, TSO would not have been any help to my ds at all. I happened to believe bartonella is another one that has to be treated ( rooted out ) before any things else could work and TSO is no different. I know I am sort of gambling at this point doing TSO with bartonella treatment but I feel like I don't have much to lose except $$$ with TSO. We attai
  20. Hi pandas 16 I felt that my ds's bartonella has to go either with TSO or without. We were approaching my ds's OCD( mostly someone touching his things, someone's saliva getting to him while talking kind of OCD)and rage over a little thing ( if I misunderstood him he would have a fit)with bartonella medication and his gut issues ( gas, frequent bowel movement, skin rash in short food allergy to almost everything)with TSO. I think it was working very well as his gut issues were all gone and his OCD was at minimum until we introduced Levaquin to his system. We are on 5th week of levaquin and last
  21. Hi Pathfinder, I thought that your son was using helminthic therapy with TSO? Do you no longer believe in the hygiene hypothesis in that you are treating intracellular bacteria? It seems like your treating it aggressively, are you having more success with that? Hello pandas 16 It is so funny you asked that question today as I decided to suspend TSO treatment for now. ( My ds drank a 2500 bottle just a week ago which makes it his 8th bottle) My ds has been on Levaquin for about 5weeks and we learned that Levaquin is working against TSO hence returning of allergy, gut issues so I am goin
  22. My ds was tested positive on Bartonella test via Quest lab as well and it was covered by insurance. I think the test is around $200 without insurance.
  23. I don't know if I could be much help here but my ds (17) who had very little tics ( very private vocal tics) before IVIG began to have a significantly worsening of tics after IVIG.( again vocal--humming like tics) Our last IVIG was done about 6months ago and his tics became once again like private, unnoticeable kind of thing for last 4-5 weeks. His tics were pretty bad when they first happened about9 years ago but as he got older, his tics subsided and became almost unnoticeable.
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