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I was wondering about the success rate for treating OCD.. is this a disorder with a high success rate, if treated properly? Id like to know how much hope I should have with getting better, or if I should accept my fate as a sick person in pain… right now I am on Luvox but it doesn’t seem to be helping, my dr says it is not helping because I drink alcohol everyday, but I can not make it through a single day with these violent thoughts without drinking, so its a very difficult situation!! What should I do? Is there hope for me? Any words would be nice, I’m very lost right now. Thanks.
although it is very uncommon for OCD to be totality cured, almost all patients can get well enough to lead a normal life with productive jobs and families. i have seen patients who are 100% disabled and stuck for years get better. it takes a lot of work with behavior therapy and often medications. no one with OCD should just accept disability from OCD. using substances like alcohol can temporarily help the anxiety associated with OCD but there is a huge price to pay in terms of rebound anxiety and depression. this approach does not work. if your main symptom is “violent thoughts” i recommend reading the book “The Imp of the Mind” by Lee Baer. this talks about how to manage the thoughts. also, with Luvox i would go to 300mg daily. you can go to http://www.ocfoundation.org for more recommendations on treatment. i would start by getting a consult with an OCD expert. the OC Foundation web site has a list of treatment providers around the world and you can put in your location to find someone. all best wishes,
Michael Jenike, MD
My son haas both autism and PANDAS. We are currently treating him with a profilactic dose of azithromycin and he has had 11 IVIG's (1.0 mg/kg) over the past year. He does get better after IVIG but the improvements only last 2 weeks and then he lapses again. I have heard that the autism/pandas population may need 18 to 20 IVIG's to get the improvements to hold? Is there any other strategies we could use to get the immune system back on track? Any thoughts as to TSO therapy or GcMAF with regards to PANDAS.
Susan Fund said:
My son haas both autism and PANDAS. We are currently treating him with a profilactic dose of azithromycin and he has had 11 IVIG's (1.0 mg/kg) over the past year. He does get better after IVIG but the improvements only last 2 weeks and then he lapses again. I have heard that the autism/pandas population may need 18 to 20 IVIG's to get the improvements to hold? Is there any other strategies we could use to get the immune system back on track? Any thoughts as to TSO therapy or GcMAF with regards to PANDAS.
My PANDAS son found lasting remission once we found and treated an underlying zinc/B6 deficiency. This has helped his immune system immensely – far more than his one high dose IVIG.
My (maybe PANS) daughter found relief from her intrusive thoughts by treating a problem with the way her body is unable to convert folate. By slowly giving her something called methylfolate (and doing lots of CBT), her bi-polarish moods and self-loathing have faded away. The methylfolate, some tryptophan and zinc/B6 supplements have also helped her overcome some eating issues and she's finally putting on weight.
I think there are definitely other options you can pursue if you aren't seeing lasting improvements from IVIG (IMO). But look forward to Dr Jenike's reply!
Susan, My son has PANDAS (PANS) and Lyme. We first treated PANDAS very aggressively for a year with continuous antibiotics, steroid burst, tonsillectomy, IVIG, then plasmapheresis. Only the plasmapheresis helped him. It yeilded a 60% reduction in symptoms. However, after two months, even those gains plateaued and steadily declined. At that point we began to look for infections other than strep that might be undermining his treatment. We found that our son had Lyme and Bartonella. Now, after an additional year (and several months of IV antibiotics for the Lyme) our son is 80% recovered and holding steady (9 months post IV antibiotic treatment).
Now that we have the Lyme and Bartonella treated I am finding that we are able to manage our son's PANDAS more effectively. Recently, he had a sudden reemergence of OCD when strep went through his class. (We maintain him on prophylactic antibiotics but apparently the one he was on did not fight the strain of strep he was exposed to well enough.) We made a quick switch of oral antibiotics and the OCD “evaporated” within days. PANDAS management success! For our son, tracking down and dealing with all the underlying infections paved the way for successful PANDAS management. I hope this might be helpful to you. Hang in there!
LLM said:
Susan Fund said:
My son haas both autism and PANDAS. We are currently treating him with a profilactic dose of azithromycin and he has had 11 IVIG's (1.0 mg/kg) over the past year. He does get better after IVIG but the improvements only last 2 weeks and then he lapses again. I have heard that the autism/pandas population may need 18 to 20 IVIG's to get the improvements to hold? Is there any other strategies we could use to get the immune system back on track? Any thoughts as to TSO therapy or GcMAF with regards to PANDAS.
My PANDAS son found lasting remission once we found and treated an underlying zinc/B6 deficiency. This has helped his immune system immensely – far more than his one high dose IVIG.
My (maybe PANS) daughter found relief from her intrusive thoughts by treating a problem with the way her body is unable to convert folate. By slowly giving her something called methylfolate (and doing lots of CBT), her bi-polarish moods and self-loathing have faded away. The methylfolate, some tryptophan and zinc/B6 supplements have also helped her overcome some eating issues and she's finally putting on weight.
I think there are definitely other options you can pursue if you aren't seeing lasting improvements from IVIG (IMO). But look forward to Dr Jenike's reply!
Susan, Dr. Swedo mentioned TSO therapy in her presentation at PAS. She said they are having success in the Autism Community with it and that perhaps this will help PANDAS kids in the future.
My PANDAS/PANS son has also seen a great decrease in his OCD type symptoms with the addition of Zithromax and Zinc to our toolbox – not sure which is helping more, as Zithromax is also anti-inflammatory and a huge part of his problem is inflammation. I have been able to eliminate regular dosing of Ibuprofen since the Zithromax was brought into play. Part of his OCD symptoms manifests in an obsession with food, hoarding it, sneaking it, and binging on it. Since these two things have been added in less than 2 months, I have seen probably a 80% reduction in symptoms. My son even says he no longer has the urge anymore. I think him saying that out loud is the most significant clue that something we are doing is helping.
Infectious triggers for OCD and many other psych disorders need to be closely examined and considered in all cases, in my opinion. How many people are walking around with an underlying medical condition that could be setting off all these things??
We never saw ANY (not even the tiniest bit of improvement in this) with the 2+ years we saw psychiatrists, psychologists, therapists (even a specialist in eating disorders) — I’m slowly able to start leaving larger quantities of things in our cabinets and the fridge without worry that he will binge on them. I.E. I can leave the box of granola bars in the cabinet and not worry that by the time I get home they will be missing. This was NEVER able to happen before. We also tried a few psych meds and saw a worsening in symptoms and behavior at home and school – including aggression.
I have been doing my best to research methylation and think there maybe an issue there and we are testing for the MTHFR gene as well.
Just to add more to the pile, I have recently been diagnosed with Lyme after over 15+ years of misdiagnoses. I strongly suspect I had this while pregnant with my son and do not think it is a coincidence he is having many symptoms of neuro lyme and responding to antibiotic therapies that are used in combination with Lyme. Another thing we are actively exploring as an underlying factor.
Dr. Michael Jenike said:
although it is very uncommon for OCD to be totality cured, almost all patients can get well enough to lead a normal life with productive jobs and families. i have seen patients who are 100% disabled and stuck for years get better. it takes a lot of work with behavior therapy and often medications. no one with OCD should just accept disability from OCD. using substances like alcohol can temporarily help the anxiety associated with OCD but there is a huge price to pay in terms of rebound anxiety and depression. this approach does not work. if your main symptom is “violent thoughts” i recommend reading the book “The Imp of the Mind” by Lee Baer. this talks about how to manage the thoughts. also, with Luvox i would go to 300mg daily. you can go to http://www.ocfoundation.org for more recommendations on treatment. i would start by getting a consult with an OCD expert. the OC Foundation web site has a list of treatment providers around the world and you can put in your location to find someone. all best wishes,
Michael Jenike, MD
Thank you Dr. Jenike, for your reply. I understand that the alcohol worsens the anxiety, I really hope I can reach a point where I dont need it. My dr just increased my meds to 100 mg, and hopefully it will reach 300 mg in the future. I have an important question regarding treatment. I have read that exposure therapy is used with OCD, I am not sure if this is true or not, but if it is, I am concerned. I want to get treatment, but I am terrified of facing my fears (even talking about them leads to tremendous anxiety). So how do you treat a person's OCD symptoms without forcing them to deal with this terrible anxiety? Is there no choice but to go through this pain since you have to talk about the fears through CBT, exposure therapy, etc? This one thought is the main factor in my choice to avoid therapy, which i know is not what a good choice. Thank you so much. Lyndsey
My daughter is 8 weeks post lVlG and 70% improved. I decided to go ahead and test for MTHFR even though my PANDAS docs told me not to worry about it. Turns out she is positive for one copy of the C677T mutation and one copy of the A1298C.
I am also concerned about Lyme and will soon be testing through Igenex. at this point I will leave no stone unturned.11
I look forward to the day when doctors can agree on what tests to run and treatment options. We need a PANDAS Center at MGH!
How do you test for methylation, MTHFR, etc? What would you do with the results?
My son is considered to be an adult, but had a garden variety of OCD symptoms since he was 2. He was just never diagnosed properly. He has been in treatment for 2 + years now, but is getting progressively worse. He had a major manic episode on Luvox, so SSRIs are out. He is unable to participate in CBT because of his anxiety. I just don’t know what else to do…. Any thought or suggestions are most welcome.
we do plan to have a major pandas center at MGH by this Fall and are recruiting a person from Yale to run the program.
if your son does not improve despite treatment, i would get a consultation with another OCD expert and see what else can be done. he may need to try one of the residential facilities for OCD (McLean near Boston; Rogers Hospital in Wisconsin).
for information on the MTHFR gene, go to:
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