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Johnsmom

OCD caused by other infection besides Strep

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I strongly suspect myco p (mycoplasma) is a trigger... believe Dr. T has written about that being a potential trigger as well.

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I think the developing theory behind PANS/PANDAS is that there may be any number of infections triggers that could lie behind the autoimmune cascade that results in the PANS/PANDAS behavior set (anxiety, OCD, tics, etc.). Strep just happened to be the first documented one.

 

Myco pneumonia, Epstein Barr, strep, lyme, lyme-related co-infections, even mono might lie behind the condition, and if a susceptible person were to be subjected to more than one trigger in a short time period? Yikes!

 

The other thing to keep in mind is that, perhaps one illness set things in motion (strep or otherwise), and you thought you got through/past it, only to have a behavioral decline again several weeks or even months later, in the absence of any identifiable illness. That's one of the insidious possibilities with this disorder: that once it has gotten a toe-hold, other, completely unrelated "immune events" such as allergies or mold exposure, can trigger a fresh exacerbation.

 

Have you had immune testing to measure various titers and immune function? Perhaps that will give you some additional information to work with.

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We have not had any immune tests in a while. I have not been on this forum for quite a few years. Not that I didn't need to be. DS is 14 and in eighth grade and I am about to pull him from school because he can't handle it anymore. He was just recently diagnosed with Colitis. We used to ride the roller coaster but not anymore. He has had no relief in months. I know the inflammation from Colitis can be causing the OCD, anxiety and depression but my gut tells me there's more to it. Right now he is on Steroid Taper (only been on steroids twice and a long time ago) and just started on Effexor.

The GI Doc agreed to prednisone and then to get him to immunologist after. He is 5'10 and 115 lb bag o' bones.

Any more words of advice would be appreciated. Thank u for responding. :)

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Fully agree. My kids even flared when they lost their baby teeth...anything that triggers and immune response...not just bacterial infections...

 

I think the developing theory behind PANS/PANDAS is that there may be any number of infections triggers that could lie behind the autoimmune cascade that results in the PANS/PANDAS behavior set (anxiety, OCD, tics, etc.). Strep just happened to be the first documented one.

 

Myco pneumonia, Epstein Barr, strep, lyme, lyme-related co-infections, even mono might lie behind the condition, and if a susceptible person were to be subjected to more than one trigger in a short time period? Yikes!

 

The other thing to keep in mind is that, perhaps one illness set things in motion (strep or otherwise), and you thought you got through/past it, only to have a behavioral decline again several weeks or even months later, in the absence of any identifiable illness. That's one of the insidious possibilities with this disorder: that once it has gotten a toe-hold, other, completely unrelated "immune events" such as allergies or mold exposure, can trigger a fresh exacerbation.

 

Have you had immune testing to measure various titers and immune function? Perhaps that will give you some additional information to work with.

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Johnsmom --

 

Colitis is autoimmune, no? So, is it possible his immune system is just plain old topped out? Glass filled up slowly over the last while, and now it's just on a constant state of overflow, what with the colitis and all? Based on our experience (DS on a "low boil" for years until he hit 12/puberty, and then that last encounter with strep sent him way over the edge), hormones might play a role, too. I think they're generally inflammatory, so they more than likely aren't helping, at a minimum.

 

Are the steroids helping?

 

My DS's most dramatic decline was strep-induced, but he's had hyper-immune issues practically since birth: GERD, chronic ear infections, allergies. Chronic state of inflammation that eventually resulted in runaway OCD and anxiety. For us, getting off that merry-go-round was a lengthy odyssey of figuring out how best to head off every inflammatory trigger we could figure out, from strep to the seasonal allergies, and how to keep his anxiety at a manageable level long enough to let his blood brain barrier begin to heal and restore its impermeability so the crap that shouldn't have gotten through it in the first place wouldn't anymore.

 

He's improved and been generally good for a few years now, but we still have to manage his unfortunately natural tendency toward an inflammatory state and situational anxiety which can result in a return to some OCD. I continue to hope that perhaps, in adulthood, his system will finally settle down permanently. But until then, he's happy and fully functional and continually developing better skills and strategies for heading off any approaching anxiety on his own, so I'll take that.

 

Good luck to you. I would hope that between your DS's GI and the immunologist, you'll be able to narrow down the culprit and meet it toe-to-toe!

Edited by MomWithOCDSon

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My daughter is 14 and she has high level of mycoplasma. Her main issue is obsessive thoughts and it is horrible. Yesterday morning she felt great. She got up early and said her head was so clear. She was happy and herself. By noon she wanted someone to kill her. We have been off antibiotics since mid January and things have been getting worse. We just feel we can't keep putting antibiotics in her. This is an autoimmune disease and I believe it starts in the gut. We are using the book " The Microbiome Solution" to heal our leaky gut. We are also about to embark on a serious essential oil program. It will be 2 years in April that this happened to us and it was just in September that we found out that is was PANS. We too are struggling in school. I am not sure she will be able to finish this year. She can't focus and doing homework, well let's just say it rarely happens lately.

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Thank you MomwithOCDson. I remember you from a few years back. Your explanation makes sense and yes Colitis is autoimmune. It's right in front of my face but sometimes I think I just needed to hear it again. I need to be back on this forum and converse with all the smart moms! Tomorrow we have ANOTHER IEP meeting to discuss DS and the possibility of attending school 1/2 days.

Thank you again!

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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!

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llm, thank you for your post. I am glad to hear that you are having success with Bruhner's herbs. I do have the book and will go that route if we don't see success with the essential oils. Are you doing the herbs on your own or do you have someone helping you with your protocol? May I ask what infections you are working on?

 

Johnsmom, I too have ulcerative colitis and taking antibiotics are very hard on the colon. I have been told to avoid antibiotics as much as I can. I wanted to tell you about a probiotic called VSL#3. It is designed for people with crohn's and colitis. It has helped me so much. There is much research to support it and you can read about it online. You cannot buy it in stores, so you will need to google a place online. Make sure they pack it in ice to keep it cold.

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Llm, I agree with your thoughts on autoimmune disease. It makes more sense that the body would be attacking something, and collateral damage occurs to self tissue. Perhaps those bacteria present just haven't been identified, perhaps they are l-forms, or they are a different small pathogen not yet discovered by science yet. Perhaps herbs or antibiotics would help. That's why I'm trying antibiotics as an adult for ocd. But I think for most people trying these things for autoimmune disease its more of an experiment, and you may get lucky with a particular combination of antibiotics or herbs.

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I just wanted throw parasites into mix.... especially rope worms, tape worms, liver flukes, etc. The gut health will never improve if parasites are present. They truly grab vital nutrients and cause there to be very little absorption. They are extremely difficult to test for even with comprehensive stool analysis and treatment requires long term diligence. Successful protocols: ozone insufflation, coffee enemas, IV Ozone, herbs. The only way I discovered rope worms was via large volume coffee enemas. 1 1/2 years later I am still treating.

 

Obvious symptoms: Dark circles under eyes, inability to thrive, inability to lose weight, weight gain, anxiety, nail biting, poor gut health (no absorption), constipation, slow transit or the exact opposite, etc.

 

I also strongly agree with what LLM has stated so eloquently about auto-immune disorders.

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