James_d

I ended up having testing done with Australian Biologics for lyme and mycoplasma PCR, and also have sent blood to Galaxy Diagnostics for Bart and co-infections. I thought it would be a good idea to have some testing done so that I would at least know what to target with the antibiotics. Im waiting now for the results, but in the meantime thought I would start slow with clarithromycin, and plan to start rifampin in 2 weeks. I am suspecting Bart, so focusing treatment on that mostly for now.

I agree, it is a guessing game. Its trial and error. If your able to see an llmd that seems like the best and only option. Need to see someone with experience. Otherwise it may not work, and just wasting money and time.
Doxy combined with something else would be recommended. As i have ocd, my ND seems to like combining things with augmentin, as augmentin appears to help ocd symptoms. But best to see what your Dr says.
My next step I think is going to be rifampin and mino combined starting from next week. But need to make sure my liver enzymes come back to normal first. Apperantly I had a rare reaction to one of the antibiotics.

I agree, it is a guessing game. Its trial and error. If your able to see an llmd that seems like the best and only option. Need to see someone with experience. Otherwise it may not work, and just wasting money and time.
Doxy combined with something else would be recommended. As i have ocd, my ND seems to like combining things with augmentin, as augmentin appears to help ocd symptoms. But best to see what your Dr says.
My next step I think is going to be rifampin and mino combined starting from next week. But need to make sure my liver enzymes come back to normal first. Apperantly I had a rare reaction to one of the antibiotics.

This naturopath is treating me with antibiotics, rather than herbs. So she's more like a regular Dr actually, and that's what I was looking for.
Kakrpa, if you've only used 2 common antibiotics, then thats not enough!
There are potentially so many infective causes. Also it is recommended to use at least 2 antibiotics at the same time.
Combos such as augmentin and azithro, or clarythro, or doxy. Doxy is more for myco.
Then if Lyme or co-infection, then would try rifam, mino, tidemax... And more Etc.
Getting worse when on some antibiotics may be a good sign of herxing. You would want to look for herxing to improve eventually, otherwise perhaps it is just a side effect of the meds? Not sure. Perhaps you need to try a different combo. But just make sure to give each combo some time, as it may take a bit longer for adults to see improvements compared to kids.

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!

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.

MyLightHouse - I highly encourage you to get Stephen Buhner's book on treating mycoplasma http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083/ref=sr_1_sc_1?ie=UTF8&qid=1459425492&sr=8-1-spell&keywords=bu+bartonella
 
He explains why it can be so hard to eradicate and offers great herbal options that don't destroy gut bacteria. I'm a Pans veteran due to my oldest child's issues 8 yrs ago, but now my younger child is Pans as well. Because she's allergic to most antibiotics, I've been turning to herbs - with much success. Herbs generally have strong tastes, but we use tinctures and put them into empty gel capsules, and then my daughter swallows the capsules without tasting anything. (but you need to take the capsule quickly or the liquid tincture melts the capsule).
 
Johnsmom - I will say something "controversial" in that I've personally come to believe that auto-immune diseases are not cases where the immune system has become confused. I think the body is wiser that western medicine gives credit. I don't think the body is inclined to waste valuable resources like macrophages or to cause self-harm with inflammation without a good reason. Recent research has looked at cases of lupus where the primary organ being attacked was the GI system and they found that these cases went into "remission" with antibiotics. They found DNA of infectious bacteria in the gut and think the immune system was (correctly IMO) attacking that DNA as an invader. Whether the DNA was just remnants of past infection or from active infection or from a biofilm colony where DNA of multiple microbes (including self) co-mingle, the study didn't say. But my take away was that the immune system wasn't confused. It was doing what it's supposed to do - not attacking self but attacking an invader doctors hadn't previously identified. And abx helped get rid of that invader.
 
Now, I'm not sure if abx would be a good thing or a bad thing for colitis. But maybe herbs? Or maybe a stool test to look for bacterial infections or yeast? It's possible that the gut inflammation is a response to something that shouldn't be there. So herbal abx or antifungals (e.g. berberine or capryl) would support the immune system's efforts rather than suppressing it.
 
As I said, I realize this isn't a commonly held view and I don't mean to start any arguments. Absolutely support your child however you feel is best. Just tossing out a different perspective - as I know there have been times people challenged my thinking and a light bulb went off. Best of luck!