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  1. I live in northern california but i think I have exhausted all the california doctors, my son is 16 and severe off the cliff decline for past 3 years, he is catatonic, psychotic, ocd, ticd, anxiety, fears, on and on, and the rages dangerous. Everyone has given up on him and I am desperate for help... pm me please any recommendations.
  2. Hi, your child sounds exactly like my 16 year old son, I dont know how to PM you, could you PM me if you know how, would love to hear more about your experience with stanford and if you mind sharing what you have tried so far... my son is in very severe condition and we cant find any help for him
  3. help, anyone know where to get plasmapheresis/therapeutic apheresis on west coast, my son has been in severe flair for three years, past year has been life threatening for him and us, he is in critical condition and three dr's have rec plasmaphersis but cant find a dr that can order it and where. Stanford wont help. all I know of is dr L and dr B on east coast... anyone know?
  4. Hi rowing mom, I sent you a private reply...hope you can respond. Have been doingmtonmof detox, I put DE with bentonite clay one night, then zeolite another, then charcoal another etc. wish I could do more than once a day but so hard with all the other stuff. Jap knotweed low dose has def calmed down the violence and psychosis some, just at a big drop three times a day in pomogranite. Julie wants to keep titrating up in it, so anxious to get rid of the myco and Bart but she wants to get brain and CNS inflammation down, I agree. Has given me a half dozen herbs to calm nervous system or seizures and resultant rages, Catonia, but nothing for the god aweful muscle movements, complex tics, severe jerking all over just had husband bring home another virus and he is a wreck again all symptoms really bad, she told me to start hyttonnia for virul, but slow. .
  5. My son has had nonstop painful debilitating muscle contractions in limbs head etc since husband brought home illness 11 weeks ago, he gets bad nervous system side effects from antivirusl. He is screaming in pain and has violent contortions of head, neck limbs. Can't sleep either is awake until like 3am. He is begging to be taken out of his body. Doctors have been no help. Any ideas?
  6. My son is 15, 2 year flair and nothing working. He has bartonella, Lyme and high IgG to almost everything ESP viruses. The psychiatric symptoms and rage and OCD and violence and ESP autonomic crisis episodes have been unbearable. Llmd keeps not wanting to treat Lyme, and another only does antibiotics which make him homocidal violent and we can't live through it. His muscles are contracting violently non stop, screaming in pain and can't find anyone that seems to want to spend more than 5 min figuring it out. Has anyone treated Bart and Lyme and myco etc with Buhner protocol, please let me know what helped...
  7. She wouldn't treat my son..
  8. What dosages of steroids and what kind have you found helpful. Seems like a good dose to bring down inflammation well and chill the immune response but not suppress too much would help. Two year scary violent, OCD, tics, fears flair not responding to anything, then I recently tried 800 mg ibuprophan and violence gone within 10 hours, amazing. But feathering on edge, every time we have tried to kill any pathogens he would just get more scary violent. Then my husband brought home cold virus and my son went homacidal, biting himself and us, self abuse bad etc. can't tolerate phenol herbs last few years, so thinking time to try steroids but last time we did 21 day taper starting at 20 mg he was so shaking and jittery feeling from that high dose then he caught a bad cold for six weeks, but that was first time he got cold symptoms in years, 2007 had a virus of some sort, got meningitis and hasn't had fever or cold symptoms since. It might have been myco in 2007 said Stanford immun, his igg is still very high. So what dosage and type of steroid and for how long has worked well.
  9. Has anyone found plasmapheresis on the west coast. My son has been suffering severely for past two years with bad flair and lex has been mentioned by llmd and two neurologists but don't know where to get it.
  10. Dr klinghart s has written a paper on how it helps Lyme, there is a clinic that uses it for Lyme patients in Germany and a small clinic here in northern Cali that just started treating adults with Lyme, yes it is actually approved for babesia treatment. Where are you getting it and who ordered it, we have been trying to find it for my son who is suffering badly...
  11. Has anyone found a doctor to order plasmapheresis Nd location to provide it in California or west coast, my neurologist thinks it might be next step but hasn't worked very hard to find a doc to order and facility to do it Deborah
  12. I would love a copy of the article too, my son continues to deteriorate, pans clinic did autoimmune testing, all came back normal, but he has all symptoms and been diag for years, but no treatments are helping...could you share what treatments are helping your daughter?
  13. Thanks that was a great video to watch That is the doc we are seeing Friday... We have treated on and off Lyme and coinfections since 2005... Same with parasites, not getting anywhere but worse. Since 2007 we both had a bad virus and since it has been downhill and no fevers or regular responses to virus, flu, cold. I want to rule out autoimmune so hoping Stanford will help, none of the Lyme or integrative docs or pandas pans docs I have consulted with have done this. The fact that the two times we did steroid burst we got sick with real cold symptoms but haven't any other time. Makes me wonder about autoimmune and why we can't kick the parasites, yeast, Lyme etc....
  14. maryyaw, antibiotics make his rages worse, mess up his gut and neurotransmitters more and fungal overgrowth and hard on adrenals/liver, make matters worse for him. we have done pred taper two times and both times he got so sick with a virus it lasted 6 weeks, he has common variable immune disorder and I really think autoimmune something, hoping Stanford will test for all autoimmune whatever... omega 3, vit D, a etc make him or agitated, I did a lot of research and I think they raise dopamine, he has high dopamine sensitivity and docs say high crazy catecholamine surges. ibuprophen and benedryl for so many years where our go to for flairs but do not help anymore, benedryl actually makes the rages more violent too. it is just so scarry. we need a miracle.
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