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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 5 of 5. This is the beginning of the thread.
Posted by Ruuudy on August 24, 2017, at 17:40:21
I first learned of PANDAS at an OCF (Obsessive-Compulsive Foundation) Conference back in the mid-90's - right as it was becoming known to the world.
There is no doubt that the beginning of my OCD traits first reared their ugly heads back in 1983 when I developed strep throat as a teenager.
The $60,000 question now is,,, knowing that PANDAS was the culprit, does that affect the treatment decisions made today for something that happened nearly 35 years ago?
I have a wonderful psychiatrist down here in Florida I work very well with, but I've also recently consulted with a prominent psychiatrist up North that has looked over my genetic makeup & also my bloodwork.
He didn't notice in abnormalities in the levels of inflammation.
Posted by Ruuudy on August 24, 2017, at 17:41:46
In reply to PANDAS, posted by Ruuudy on August 24, 2017, at 17:40:21
Shoulda' added this link in there to an article I just read:
http://psychnews.psychiatryonline.org/doi/full/10.1176/appi.pn.2017.8b12
Posted by bleauberry on August 25, 2017, at 6:20:24
In reply to PANDAS, posted by Ruuudy on August 24, 2017, at 17:40:21
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) .
Consider this. Lyme is an autoimmune disease.
Consider this. Other mystery diseases such as Psychiatric, CFS, MS, FM and a dozen or so others have anecdotally responded to antibiotics, while some M.D.s have accidentally discovered in their own practice that most of these are actually misdiagnosed tick born infections. Those same infections can also come, less frequently, from mice in the house, rats, cat scratches or bites, mosquitoes and fleas.
Consider this. Lyme affects different people in different ways. It is the great deceiver. It usually looks like a different disease and is frequently misdiagnosed. Estimates are that for each 1 person correctly diagnosed and treated, there are 9 others not. And the most common symptoms include anxiety and psych symptoms that do not respond well to conventional medicines.
PANDAS and Lyme and CFS and MS and FM all have one thing in common - they are autoimmune conditions - they look similar - depending on the skill, judgement, and experience of the doctor, a misdiagnosis is possible. My doctor would be so bold as to say most of those patients are actually Lyme misdiagnosed. He says that because that's all the kind of patients he sees every day. I was one of them. WAS. :-)
The profound crippling anxiety I had, which was only helped by Zyprexa for a while, went completely gone, after 25 years of it, with a few months of Lyme related herbs and antibiotics from a doctor who had made the connection between Lyme and psychiatry. Most have not made that connection. Much less PANDAS.
I am merely thinking out loud, not really saying anything in particular. I find it curious how we have all these different names for different clusters of symptoms and we approach them all as separate distinct things and we are quite sure of it. And yet, despite being so sure, we know so little about them. We can't even say how they started or how to reverse them. We attempt to treat them from that vantage point. Interesting.
In my experience I'm not sure which is worse - anxiety or depression. I've had both singularly and I've had both at the same time. Both are straight from hell. Or in my case, straight from a tick bite I never knew happened.
Posted by bleauberry on August 25, 2017, at 6:25:17
In reply to PANDAS, posted by Ruuudy on August 24, 2017, at 17:40:21
Just saw the study link on PANDAS. What I found profoundly interesting about it is that if you removed the word PANDAS from the article and substituted Lyme instead, the article is spot on either way.
It clearly makes the link between stealth unsuspected infections and psychiatric symptoms.
I would just add that I believe that is far more common than anyone will admit and that many or most of us here, are impacted by it. Imo
Posted by Jeroen on October 1, 2017, at 5:14:22
In reply to Re: PANDAS, posted by bleauberry on August 25, 2017, at 6:20:24
hey old friend
ive tried Sarcosine and it healed manic brain damage permanent i can now function on Klonopin, Abilify 400 mg injection, and a beta blocker
Ive ditched seroquel XR for over a year now i currently dont need it 1 year off it complete
my lyme or mystery schizophrenia symptoms the negative symptoms and good feeling are not completely healed. its so strange that
responded to seroquel 100 mg a dacade ago for 2 months then it never worked again
MINOCYCLINE 50 mg was my magic bullet for a short period of time until i got IBS from it and an allergic reaction im resistant to it nowbut it works against all my mystery lyme and schizophrenia symptoms. complete remission
Bleauberry, i am going to a doctor im sick of it i am going to ask the normal doctor for a re test for lyme but you know the first one positive and the second one was negative the western bloti do am scared to try doxycycline...
I respond to all the anti viral meds you mentioned here
- Amantadine after a week
- Minocycline 50 mg 3 days
- Cipro anti biotic ear drops 3 daysmy psychosis cleared up from the abx amantadine gave a major improvement but then almost threw me in a secondairy psychosis the anti biotics not just a major severe herx reaction at start.
i also respond to nisoral shampoo on a yeast infection a while ago i applied a tiny bit on that spot and got some sort of anti depressant effect from italso from an anti septic
but i am resistant to all of it now
your friend Jeroen
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