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Everything posted by Bill

  1. We just found the same for our son - homozygous C677T mutation.... No expert here so take everything I say with a salt shaker of salt. My degree in genetics is from the University of Google this past week. We've been trying to heal my son for the past 12 years so I would NOT follow anything I say too closely unless to do the opposite perhaps. BTW - undiagnosed for 5 years, then PANDAS, then Lyme, now still fighting bartonella and babesia. Raging, dilated pupils, dystonia (like) symptoms, severe OCD, tics, depression, complete loss of math skills, things I've forgotten....Most symptoms are
  2. SFMom's response covered much of anything I could say so just adding "what we did." Short background story is that our son likely had lyme/bartonella/PANDAS for 9 years before being diagnosed. No idea which came first or when. We were fortunate (haha) in that SSRIs kept his raging under control during much of the time he went undiagnosed/misdiagnosed. He also developed severe OCD, dystonia affecting most of his body, and yes - his pupils were dilated for some 5 years prior to proper diagnosis! (Other symptoms but you get the idea.) So - we waited 9 months after starting antibiotic treatmen
  3. Burrascono in ADVANCED TOPICS IN LYME DISEASE DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES Fifteenth Edition; Copyright September, 2005; JOSEPH J. BURRASCANO JR., M.D. "The best source is magnesium L-lactate dehydrate (“Mag-tab SR”, sold by Niche Pharmaceuticals..." We have used it with my son for a couple of years now. It is the only supplement that he has asked for and the only one that appears to do anything for him.
  4. MRI showed 3 small lesions on my son's brain. Was done several years ago - I do not remember where the lesions were. He has since been diagnosed with Lyme in addition to PANDAS. Primary symptoms were dilated pupils, dystonia, raging, OCD, loss of math skills, tics, others...
  5. My son's Cam Kinase score was 126. High but not too high; not nearly as high as Dr. L. was expecting based on symptoms (initially thought to be "just" Pandas). After receiving the lyme diagnosis, I e-mailed Dr. C. with the update. She replied "His CaM score is so low that I suspect that the disease manifestations were primarily due to the infection alone and not as much to autoimmune responses..." Professional courtesy caveats - her reply was simply a professional opinion at the time and not (nor was it meant to be) a diagnosis of any type. That was two years ago so I do not know how t
  6. I've not posted much in a long time. Every now and then though I stumble across something that reminds me of the struggles. One of my son's earliest symptoms were non-responsive dilated pupils. Doctor after doctor stated that it was the result of the medicine he was on. Well yes doctor that is a side effect however his pupils were dilated before he ever started medicine - that's what sent him for a quick MRI initially to rule out tumor......blank stares. So years later I read that there are really only a few causes of pupil dilation: medicines, tumors, brain inflammation that impac
  7. Took the dog for a walk. Let her get into some of the higher grass because after all - we've had sleet/snow/ice just the other day. Today only got to 45.....The winter has been much colder for longer spells than my wife and I remember recently. Apparently not cold enough long enough. Found a deer tick on her chest 10 minutes after coming inside. Have already put some tick stuff on her and checked myself. I live in Northern VA.
  8. Link to article at Science Daily --> http://www.sciencedaily.com/releases/2012/10/121025174140.htm Summary: "ScienceDaily (Oct. 25, 2012) — Investigators at The University of Texas Health Science Center at Houston (UTHealth) have accelerated the search for the bacterial genes that make the Lyme disease bacterium so invasive and persistent. The discovery could advance the diagnosis and treatment of this disease, which affects an estimated 30,000 Americans each year."
  9. Apologize for the delay. As things continue to improve, I am here less often! During the first year, we were treating Pandas (strep), Lyme, and bartonella. The combination was somewhat of a compromise. We (wife and I) noticed that son was responding positively to azithromycin and augmentin combination. Our doctor really favors minocycline as she feels it passes blood/brain barrier better than other ABX. The tindamax (now flagyl) is complete coverage for the forms of lyme. Our doctor would have stuck with azithromycin and the mino but respected our observations regarding the azithromy
  10. My son stayed on this combination for a year or so: 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 We dropped the augmentin when his bowels became loose more frequently. We have also since switched from tindamax to flagyl. Just completing year 2. We also recently drop the Azithromycin down to once a day. At this point our doctor has recommended slowly reducing/dropping items keeping an eye out for any retu
  11. Well I drop dead agree with treating a bullseye. That is a classic symptom as far as I am concerned. My wife some 6 years ago had classic Lyme symptoms in the summer without a bullseye. She had a fever with severe joint pain and headaches within days of removing a tick. Doxy knocked it right out so it must have been Lyme. I am saying that unless someone has symptoms from the tick bite then you do not treat it. I say that with the irony that I had a large expanding rash and treated it moderately aggressively with 200 mg Doxy twice a day for 3 weeks. I still got bart. Now whether Lyme was pres
  12. My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG. Mino is like Doxy, correct? Bill is the IVIG for Lyme or PANDAS? If Lyme, how man has your son had and have you see
  13. You have the ticks - there are places to send them to be tested. I've not done that so don't have any advice but the Internet is your friend. Even the great state of Texas which I understand denies the existence of Lyme bacteria there, can't argue if you know you brought them back from the Lyme infested east coast. I'm not sure what the right answer is but when my daughter was bitten, our doctor put her on a dose of minocycline and azithromycin immediately (3 days per week) plus flagyl on the weekend for about 8 weeks.. Daughter did have a circular bruise greater than 5cm around a red b
  14. My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG.
  15. Concur with everyone else and would agree that you made the right choice (or as I'm fond of saying, any choice you make regarding your child and this illness is the right one!). The one question I would have for Dr. B. is how was he continuing to justify the IVIG? Was he diagnosed as CVID? Was he periodically retesting antibody levels? Our son was diagnosed CVID and IVIG was approved based on that. We have seen some improvement after each one (I think 5 now) though some more than others. For us, Dr. B. said that treatment continues until no further progress is made. I take that to mea
  16. I've not heard of that exact description but I would say yes. My son did not have racing thoughts - or if he did he was unable to express that, but he went through a long period where watching TV was about all he was good for. Regarding treatment for Lyme, my son was (eventually) diagnosed with PANDAS, Lyme, bartonella. He has been on multiple ABX with primary ones being augmentin, minocycline, and azithromycin. He was on all three for about a year but then started having problems with bowels. At that point we dropped the augmentin. Started serious treatment at 12, now 14. As to t
  17. My son tested positive for Lyme (by LLMD standards) and for Bartonella (which would strongly support the lyme diagnosis). He also had high ASO/DNASE counts but only scored low high (I think 126) on the Cunningham test. All of the doctors consider him PANDAS plus lyme. He has completed 5 IVIGs; scheduled for 6th later August. From my point of view - PANDAS looks a lot like Lyme looks a lot like PANDAS.......everyone is so different not sure how you know which causes what symptoms. In my son's case - we believe the lyme led to the PANDAS - but who knows. Treating lyme should treat the stre
  18. Feel your pain. Not sure there is much you can do beyond keeping options open for him. I don't know your specific details but isolation is generally self imposed by the kids. You can't really push them to socialize if they don't want to. (BTW - I know that I am reading a lot into the post so my apologies if I'm way off base. If his isolation is due to the illness - keeping him isolated for medical reasons, please ignore my post.) We took advantage of my son's good days when he would venture out. Trips to Target were a treat for him. Church was difficult but something that is importa
  19. I am afraid I do not have a good recommendation on whether to give the next 5 days of ABX or not. Sounds like you have had good results with ABX several times now. Have you document or recorded your son before/during/after ABX? Even if your doctor has never heard of PANDAS - it should be hard for him to ignore such evidence (though don't be too surprised if they do!). Along with the videos/documentation - hand him a copy of Swedo's original research or a number of later articles on this topic. The top thread - Healpful Threads for PANDAS contains a number of useful links. Sometimes we
  20. We have herds of deer, plenty of rabbits, a groundhog or two, but I've only seen one sign that we have any mice in the area. That could be because we have a couple of very healthy black snakes living in the yard. My wife is not too happy but I asked her if she'd rather have the snakes (which for the most part we do not see) or the mice? More seriously, we've removed a dozen plus ticks from our dog and selves since the season began and we really don't go out much anymore. My pandas/lyme son is still recovering. My 18 yr. old daughter just got lyme diagnosis confirmed. Fortunately - yea
  21. Dr. Susan Perlmutter was on Swedo's original team at NIH regarding PANDAS if I've kept my facts straight. She IS very familiar with PANDAS. I do not know if she is accepting new patients - wasn't the last time I knew but that has been a while ago. Her office was in Reston, VA.
  22. Just our experience, Our son reacted positively and immediately (within hours) to Zoloft. He stayed on Zoloft (25mg) for 3 years before all ###### broke through again. You could say that when it stopped working - it was spectacular! It then took us months to discover that low dose Prozac (40mg) worked. It took 2 days before we were sure the Prozac was working. He is an anomaly for his rapid response to these drugs. These only controlled his anger/raging. The OCD started at the same time the Zoloft failed. No prescription of any type helped with the OCD. He is slowly making progres
  23. Regarding "Has anyone decided to forgo antibiotics and request IvIg instead?" To answer your question directly - you cannot forgo ABX and just treat with IVIG. Your daughter needs the ABX. The IVIG might augment treatment for your daughter but it will not treat the Lyme/bartonella bacteria. (Though do keep in mind I have zippo medical training beyond the school of hard knocks.) Our son was (finally) diagnosed with Lyme/bartonella as well. We believe he also had PANDAS meaning the strep bacteria was in play. Not sure which came first. We are doing IVIG in addition to the same
  24. The doctors seem to have their own preferences and I know through these boards that doctors do not treat their own patients the same way each time. I'm sure they tailor treatment for your child and will further tailor on subsequent treatments as needed. My son's last IVIG though.... Solu Medrol in the IV on day 1 (form of prednisone) Benadryl and ibuprofen about 1 hour before starting the procedure and every 6 hours during the next two days of the procedure. If needed, that can continue through the night but my son did not wake up with headaches so I let him sleep. Saline drip t
  25. I gave Vitamin K2 (2 X90mcg; Jarrow MK-7 from Natto extract) to my son for 4 months. Did not notice a difference so let it run out. bill
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