LaurenK

This is a reactive arthritis symptom for me. It's a different autoimmune problem that can go along with strep mediated autoimmune issues. I got it 5 weeks after my first missed strep infection. It went away with PANDAS treatment.

Benedryl can also aggravate tics considerably in my own personal experience. I would be wary about using it.

Did you see any improvement within 1-8 weeks at all? I would agree with LLM in that maybe something underlying is causing the symptoms because donor antibodies are gone by 6 weeks.

MMC, which treatments have you tried to relieve the tics?

I think that there are a lot of different theories on this, I'll go ahead and name some: 1) After IVIG, your body can develop immune complexes 2) The donor antibodies are getting at some sort of intra-cellular bacteria and causing a die-off reaction 3) You liver gets sort of overwhelmed with all the bad antibodies that the good ones are destroying 4) Problem behavior might be a chronic infection such as Lyme or mycoplasma- it may not be an up and down at all. Most of it, I think relates back to the detoxification pathways in the body being blocked up. Those are the main ones that I have heard. In terms of how IVIG works, there are several different theories on that as well. Some say that it resets the immune system, others say that it simply modulates the immune response, others say it gets rid of chronic infections, and a newer one that I've heard is that the donor antibodies prevent the bad ones from doing damage once inside the basal ganglia....something about mglur1. I'll have to go back and ask my neurologist this.

medical marijuana was always very helpful for me during severe flares. I wouldnt use it regularly though.

mkmip67, Im curious about the treatments that you have tried other than prozac?

I agree, online communication is very hard sometimes.

I take a probiotic with strep thermophilus and never had any issue. I also take strep salivarus and have no issue either.

Joybop, I have had IV steroids 3g, 2g, 1g- nothing lower than that. I've also had IVIG. I can tell you from my own personal experience, steroids in combination with IVIG work best. With steroids alone, I always relapsed within 6 months because they do not modulate the immune response, they simply take down inflammation. IVIG on the other hand does modulate the immune response. High dose steroids are extremely difficult to come off of and only sometimes to neurologist prescribe a taper. It's truly a horrific withdrawal, so if you do high dose steroids, be aware of that, and be ready. Also, for me, there was a turning of the pages for both treatments.

I certainly didn't mean it in a condescending way. I simply think its important to bring the autoimmune aspect to light especially with people who are newly diagnosed. Do excuse me if you felt offended.

I'm not sure. I just push through it. I'm sorry it doesn't work for you.

severe enough for the symptoms to have a negative impact on his quality of life.

Of course, I go through the CBT with him along the way because I've been through it myself. It works. I don't let the OCD win. ever. You get up, you do what you have to do, you fight or you wait until the episode is over and then try the CBT. If you let the OCD win once, then you've lost. That's how I get through. I realize what I said could be a little harsh and I do apologize.

tpotter,I would have to disagree that mycoplasma can flat out be the cause for rages. It may trigger PANDAS or PANS which could result in rages, but that's due to the autoimmune response, not necessarily the bacteria itself. Most people will test positive for mycoplasma in the winter but not have mood issues to go along with it. Also, there's clearly some sort of genetic difference between those children who get tics vs ocd vs rages vs adhd.

Yeah for me it works amazingly well. I really feel a difference on it.

I saw him before the whole brain on fire book so I called and got an appointment the next week. Now for follow ups I can get an appointment whenever.

I also drink kefir. It does help alot, but danactive has more than acidophilus too.

Try Blis K12. I take that instead of antibiotics to prevent strep. It got brilliant reviews on amazon and is documented in pubmed too.

Danactive comes in little bottles, I think there's 50 million or billion. I drink 2 a day + Kefir- no pills

I was doing steroids. I had planned IVIG but I wanted to put it off until the summer when I'm off. I'm a teacher. His protocol is 2.g for the first couple and then 1.g for a couple months thereafter. It all depends on the individual. I was concerned because I read on here that 1g was pro-inflammatory, but then he showed me the science. It's absolutely incorrect. 1g is used in autoimmune diseases all time and he said had great success with a lower maintenance dose than nothing.

well im starting his IVIG protocol in august to see if what he thinks will work.

He said that once the autoimmune process has started, anything can set it off once you are in that hyper state. He said that IVIG will help fix that because it modulates the immune response to infections, prevents the auto antibodies from causing damage (he's researching this), and gets rid of them. Steroids and PEX only stop the inflammatory cascade where as IVIG changes the immune system. His philosophy interests me because I was never a chronic infection believer and his treatment protocol works.

N wants checkups every 6 weeks where you see him and he does a full neuro exam, at least in my case. Make sure you ask if sypke consults would be possible.

Do you have a second IVIG planned?