PANDAS in Adults

[nyfirefly11]

Has anyone had experience treating OCD (presumably caused by PANDAS) in adults? Would 1000mg of Augmentin XR 2x/day be a good starting place?

 

Thanks!

[Missmom]

I would think that it would be a good place to start. I really don't see how it could hurt anything as long as you get liver panels checked if you have a doctor who would prescribe this long term. I would give it at least a month to see if you notice any improvements. Did your symptoms recently appear, or have you been dealing with this since childhood? Do you remember any sort of sudden onset? Do you remember anything specific during your childhood that may have triggered this? Did your symptoms come and go? I am just curious if this started for you as an adult.m I am sure others will chime in, but I would definitely try the augmentin.

[nyfirefly11]

Hey, thanks for responding.

 

I've had the OCD since I was a kid (maybe 8-10 years old?). It started as facial tics, then morphed into more mentally based. It has been on a off since, and was complicated by 12 years of Lyme (but that's better .

 

I don't remember how it all started, but it definitely could've happened suddenly (I imagine I had strep at least once as a kid, and my dad says I had Scarlett Fever at some point).

 

I just tried Augmentin 875mg for a month, which seemed to help at least a little with the mental o-c, but was going to talk to my doc about going up to 1000mg. I'm also seeing Dr. L in DC next week for the first time, so I was going to chat with her about it and have her do some blood work.

[sf_mom]

I am curious.... Do you remember a tick bite? If so, when did the OCD start in relationship to the bite.

 

Many of our children have chronic Lyme. In our situation, our older son PANS was trigger by several events: annual vaccinations, strep illness and virus in three week period. He has been treated for Lyme et al for the last 4 years and his OCD has been mostly non-exsistant for several years.

 

I am also curious of your course of treatment over the last 12 years and was the OCD minimal while undergoing treatment? Do you still have some of the traditional symptoms of Lyme et al?

 

Depending on which Dr. you talk with some believe it is parasites that drives the OCD, some believe it is the combination of bugs, some think it is bartonella, some think it is just autoimmunity, some think it is strep. I tend to believe it is all of the it.

 

By the way 2,000 m.g. of Augmentin would not be enough to treat for your probable size and weight. I have taken 4,000 m.g. of Augmentin per day and suspect I am much smaller than you.

[3boysmom]

You could search the topic section of this forum. Adults with PANDAS have posted on this forum other times over the years.

 

Also....DON'T forget to take probiotics and you may want to try diet changes to Glutten Free.

 

Good luck on your journey for answers and keep us posted!

Linda

[3boysmom]

Oops double posted

Edited January 28, 2014 by 3boysmom

[Guest]

Yea definitely probiotics! C-diff and other infections are a risk with abx. I'm sure some others could chime in and give some specifics on those but they must be taken.

 

Good luck. I have immune mediated ocd, but nothing has helped so far.

[philamom]

nyfirefly- you may want to look into Bartonella. You probably already know this, given the lyme dx, but Bartonella is very elusive and very difficult to yield a positive test. My dd's bart tests have repeatedly come back negative through Igenex, but have come back positive a few times thru Quest. Important- If you run it through Quest, be certain to have the doctor order it to be performed at their Nicholas Lab in California. It is covered by our insurance. Symptoms from the bartonella infection included anxiety, ocd, GI issues in my daughter.

 

Good luck with your appointment!

[evergreen]

You appear to have the same scenario going on that my sons and many others here have, Strep, Lyme, OCD. Getting the infections under control should help but of course this is easier said than done when you have a certain genetic makeup.

 

You may want to check into the methylation issue if you haven't already. You can look into the 23 and me test which will show you where your biochemistry is compromised, then may be able to supplement to correct the deficiencies. there is much information on this forum about this. It is not an easy thing to get help with but more docs are starting to be aware of this and hopefully progress will be made.

 

One of my son's is just starting to treat with nutritional supplements based on genetic testing done by Dr. T. Hope we get results!

[James_d]

Im also an adult with ocd, and am experimenting to treat this with antibiotics currently. Curious to hear updates on how people are going and maybe get some advise on what else I should try.

A brief rundown of my situation.

Came down with OCD at age 25 after stressful life events. Im now 32. There has been a gradual improvement over the years, but OCD still effects my life.
In the last 7 years I have tried the following.

- Mary Reed vitamin/herbal treatment for 2-3 years with minimal effect

- gluten free/low carb for 8 months - significant weight loss (already too skinny), with mild benefit.

- heavy metal detox with andy cutlers treatment for nearly a year with possibly no effect

- Anti-strep herbal treatment for about 1 year with minimal benefit

 

Now in the last 6 months I have been trialing a combination of antibiotics including augmentin, azithromycin, clarythromycin, doxy. When I started these 6 months ago I had some significant herx, with much worse OCD, these seem to improve within a few weeks, but I only seem to get back to baseline. I dont seem to make any significant gains. Every time I add or change an antibiotic I seem to herx for 2 weeks, but just go back to baseline.

I had to stop antibiotics last week due to liver enzymes becoming deranged. But I plan to start a different set of antibiotics in about 2 weeks to target possible lyme/bart etc.

All my previous blood tests are clear of any infections. So I have no particular hint of where I should be treating.

 

I personally believe that the majority of adults or children with mental health issues are likely due to an underlying infective cause.

From what I read, it seems some people see no improvement with some antibiotics, but then see gains with others. I am thinking I may have bart or some other infection, and am hoping I will start seeing more gains with different antibiotics.
I would love to hear from others, as I feel this journey is so lonely at times. So little information out there! This forum has been very enlightening and educational, and a lot of my treatment ideas has come from here.

[Wombat140]

Hi, there's me but I can't say much that's useful, as nothing seems to be working for me at the moment! Some info about my history in my sig. Will subscribe to this thread myself.

[kakrpa]

My situation is very similar to James_d. Im an adult with severe OCD. I had no mental health concerns at all until a fairly abrupt OCD onset at age 23. I'm still baffled by it - I'm 37 now (would anyone 14 years ago have suspected to test me for various infections prior to this onset? Surely not).

[kakrpa]

Also, worked with Dr T about a year ago and various testing showed high (latent) titers for mycoplasma pneumoniae, Coxsackie A and B, EBV, HHV6 (no strep). I think the biggest concern from Dr T was the high mycoplasma and coxsackie numbers. He also noted my genetic profile showed striking similarity for a predisposition towards PANDAS/PANS.

[James_d]

Great to read some replies. I find reading these forums so useful, as it helps me think of treatment options.

Wombat, I notice that you only tried a small amount of limited antibiotics. Did you ever try Lyme/Bart/myco treatment?

I haven't noticed much gains on strep treatment either. Although in that 2 weeks being off antibiotics, strangely I feel I may be a little better now compared to 6 months ago. Its hard to tell as its so gradual.

Kakrpa, what did you try in the past? Did you try anything for infections? Did the llmd give any advice?

I'm seeing a naturopathic Dr from Canada, via phone consults. She actually tells me what antibiotics to take and I get a Gp to prescribe them. She seems fairly confident in treating these infections. But I don't have much to compare her to.

Currently she suggests doing igenex testing. It's just too expensive for me. And based on what I read I'm not sure if it will change treatment anyways. Any thoughts on this?

Thanks guys and hopefully we can help each other out!

[kakrpa]

James_d glad to hear you're working with a good naturopath...keep us posted on ur progress!

I have not had igenex testing done - is that for lyme?

I've tried only two diff but fairly common antibiotics - I didn't notice any improvement even sometimes felt worse (maybe due to change in gut microbes?).