OCD worse by the week...

[laure]

OK, so how long until we see any light? Because right now we are on a steady decline since mid-Feb, saw Dr. Jones late March and added Bactrim to abx cocktail, still slow steady decline. Does not sound like any herxes I read about here, just day by day more OCD issues, all contamination. I soooo wish it did sound like a herx, believe it or not. No tics, no aches or pains, no fatigue (quite the opposite), no rages, no anxiety, no skin stuff, no headaches. No one in the house is sick (ever). Last week Dr B changed Augmentin to Vancomycin, still same. Still declining. Nothing better. Not a thing. No sense in keeping a log, it would read the same every day with a new line, "slightly more OCD issues." Really??? We do detox, probiotics, etc. I can plow on, as we have since mid-Feb ...but our house/family is in a tailspin here, holding breath all the time.

 

 

You are not alone. My son has never "herxed" by the classical definition. Sounds same as what you are experiencing. My son did test positive for Bartonella and doc. associates raging and OCD with Bartonella. His OCD continued to get worse from December right until - recently. Not sure if he's really getting better or the threats of sending him off to Wisconsin this summer (Rogers Institute) have finally caught his attention. Everything is so low and slow we can not tell the difference between changes and well, just changes.

 

bill

 

Oh dear...it sounds like our kids are similar! Except when my daughter first began the aug/zith combo, overnight she lost so many OCD behaviors, got all her dolls out of the closet, could wash her hair again (it was absolutely disgusting, going about 3 weeks between showers, never brushed), brush her teeth, etc. Now she is slipping slipping back to that place, except instead of never showering she showers 6 times a day at least. Plus LOTS of other issues. Amazingly she is still going to school.

[DesperateInSeattle]

I'm so sorry to hear of your struggles. We too are having a rough time. My DS who is 7 is on Zithromax and Rifampin and the full host of detox, probiotic and supplements. It is so exhausting. He recently had the Rifampin increased to double dose and like you, we've seen nothing but a worsening of symptoms. His OCD presents as perfectionism and doubt. He needs to repeat things and phrases over and over until they are "right" for him. He's bullied us into his rituals and now we can not move on until we say we're sorry. It has to be just the right way, standing in just the right place, doing just the right thing and sometimes we have to repeat actions and saying sorry until it's just right. I'm late to work now more often than I'm on time, and so far my boss has been understanding with what I'm going through, but I fear for my job. Today I had to leave early to pick him up from the child care facility because he would not come in from outside and one of the counselors had to stand with him outside until I got there. When I got there, he was outside holding on to a metal railing and would not let go until one of the counselors came out to say, "sorry". We accidentally stopped rifampin for 1 month, because I didn't realize we were supposed to refill the Rx and shortly thereafter, he had an amazing 2 weeks of "normal". His motor skills returned and his OCD was virtually gone. I would try the break from antibiotics again, but I just read that intermittent use of Rifampin can lead to dangerous allergic reactions when the antibiotic is resumed. But after reading this thread and putting 2 and 2 together, I wonder if the rifampin is not doing more harm than good. Unfortunately, our antibiotic choices are limited since he is allergic to penicillin and all the related antibiotics are out. Like you, I am worn out and at my wits end. We were supposed to go to Disney World on Saturday with him, but I'm seriously wondering if this will be possible in his current state. But not going would just crush my DD as she has really been looking forward to this trip. I don't know what to do anymore. Sorry, I'm venting and not offering any hope here.

[sf_mom]

I am so sorry for your struggles and increase in OCD. You are right about the rifampin is one antibiotic you do not want to pulse regularly. We did have an adverse reaction to rifampin and had a high fever 103+ with other symptoms that were flu like for 5 days..... LLMD said it probably started out as a herx on day 30 post antibiotic rotation but evolved into something much worse. Recently posted about it on forum.

 

Wishing you fortitude while attempting to lead a normal life that includes a possible vacation.

[LNN]

Well, they say misery loves company, and I'm sorry to say this thread has actually made me feel better. DS had an amazing response when we initially switched from the Pandas path to the lyme/bartonella path. Three months of so much promise - he felt so so good. But he plateaued and then backslid. So in March we switched out abx combo and either the omnicef we added is kicking butt or dropping augmentin is causing a flair. Tics returned immediately upon the switch and many symptoms quickly ramped up. They've been slowly, slowly subsiding over the past 7 weeks but....As a test, we stopped omnicef for 4 days last week. The first 3 days, saw no change one way or the other. 4th day, things got worse and tics increased significantly. Re-started omnicef and things are up and down. (we're suspending tindamax weekends until we get this sorted out). Too soon to say which direction. I thought I could stomach this, but when you can't tell a long herx from a flair, you start to question yourself - a lot - and at 2am. I always know we're in a bad spot when I start waking up in the middle of the night again.

 

I initially didn't want to hijack this thread, but something's been bothering me and maybe you guys have some ideas. In Pandas, it's all about inflammation, cytokines, keeping the immune system calm. In lyme, it's about herxing and detox. But you never find articles about how lyme differs in kids (ok, maybe a sentence or two), not much about neuro-lyme, very little about bartonella, and aside from one Cunningham article about RF and lyme, nothing about lyme-induced auto-immunity.

 

Yet, here we have a group of kids who are all presenting with similar problems, all of us having come from a Pandas dx. Lyme literature suggests that if you can lessen the load, autoimmunity may resolve. So the focus is on germ warfare. But how do you support your child and your family during the long long battle? This is nuts. My current thinking is that maybe what I'm seeing isn't a traditional herx but more of an autoimmune response. Not sure what to do if that's the case. Or maybe I need to do more research on biofilms. But all of a sudden, this path feels "wrong" - getting better shouldn't bring us back to the really bad places for months at a time. Maybe our kids are a sub-group, or maybe it's because they're kids and they respond differently, but the fact that it isn't just my kid struggling like this makes me think there's more to this than a "herx." The last time I felt this way was after IVIG when DS didn't follow the script and react as predicted. That led us to lyme. It's happening again, but I don't know what to do about it. I'm missing a puzzle piece. We stay the course...for now.

[KaraM]

 

I initially didn't want to hijack this thread, but something's been bothering me and maybe you guys have some ideas. In Pandas, it's all about inflammation, cytokines, keeping the immune system calm. In lyme, it's about herxing and detox. But you never find articles about how lyme differs in kids (ok, maybe a sentence or two), not much about neuro-lyme, very little about bartonella, and aside from one Cunningham article about RF and lyme, nothing about lyme-induced auto-immunity.

 

 

This has been nagging at me, too. I keep hearing from others here (or a comment by Dr. J's assitant) about the connection between OCD and Bartonella, but finding something more detailed, formal, official... has been close to impossible.

 

I also keep thinking there has to be a connection between Lyme/TBIs and strep. In Cure Unknown, there is a paragpraph that discussess how Dr. J was one of the first to treat Lyme as a bacterial infection (in the 70s??) because so many of his patients coming for Lyme treatment also had strep and when he treated the strep with abx, their Lyme symptoms improved.

 

The other thing I wonder about is what is happening with the brain. Is it inflammation due to antibodies attacking the brain as stated in PANDAS? Or is the Baronella infection actually in the brain somewhere wreaking havoc and inflammation has nothing to do with it???

 

Sorry if I'm an accomplice to hijacking....

[laure]

Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

[lfran]

This is discouraging/frightening. I am just about to start Lyme treatment for DS9. He is postive for lyme via urine antigen test, equivocal on WB. He has been doing pretty well the last few months, so was holding off on treatment. Last few days, huge increase in tics. One example, he plays an instrument, and couldn't practice last night because tics were so high. Just sent off blood for coinfection testing yesterday. BUT...also had cransiosacral therapy the morning of the day the tics started to increase...and there are people out there who think that neck/jaw misalignment plays a huge role in tics/tourettes. So...could that have triggered it?

 

When he was on zith/augmentin last year for possible pandas, he initially did worse, then started to "reminisce" about tics and fears that were gone. When we had to stop the abx, there were huge emotional repercussions that lasted for months. Panic attacks, anger, etc.

 

WHYYYYY do our kids have to go through this??? And my insurance won't cover any of this -- appointments, meds, etc, so every path we take has to be thought out soooo carefully. And my son is sick of being taken to doctors. And there is NO CLUE which of the 15 different paths is the right one.

 

Sorry. I too have been up in the middle of the night recently. Any encouragement is welcome.

 

 

Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

[smartyjones]

The other thing I wonder about is what is happening with the brain. Is it inflammation due to antibodies attacking the brain as stated in PANDAS? Or is the Baronella infection actually in the brain somewhere wreaking havoc and inflammation has nothing to do with it???

 

i think it could be both. unfortunately, that area of brain research for bacteria and viruses is quite lacking. i think that could be a key. our dr does believe many viruses/bacteria can get into the brain and "bother" it.

 

but also for ds, motrin has been a clear remedy. perhpas there is infection in the brain that causing inflammation, and it's the infection itself and not antibodies. or it's antibodies that are trying to get the infection but are also getting the brain.

[LNN]

Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

 

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con.

[laure]

Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

 

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con.

 

 

Dr. J has spoken about PEX...can you explain the difference from a treatment perspective?

[LNN]

PEX is essentially blood dialysis but only of the immunoglobulin (the clear plasma of the blood). The patient's blood is taken out of the body via a central PICC line, spun in a warmed centrifuge (to maintain body temp) and the plasma/immunoglobulin is removed and discarded. The red blood cells are then returned into the patient's body, along with albumin and proteins to replace the volume of immunoglobulin that's been removed. The thinking is that the auto-antibodies attacking self are removed (however, so are all other antibodies, including those that may be fighting current infection). The body still has B cells and will regenerate antibodies as needed. But my personal feeling is that if there's an active infection that's resulting in the creation of auto-antibodies, you're just going to regenerate the same stuff you've just removed unless the infection is first eradicated. Just my opinion.

 

IVIG is the opposite. Instead of removing antibodies, you're adding in tons of antibodies from donors. The thinking is that these healthy, normal antibodies will flood the body and convince the immune system to stop making it's own (which are defective and attack the self). One benefit is that a flood of antibodies may also help fight any current infection. However, on the flip side, this may trigger a pronounced herx. It also carries risks, however small, of introducing something from one of the donors. It was this element that always made me uncomfortable. However, as a practical matter, it may have been the severity of a herx that made it so rough for us. All I know is that it's not something my family would willingly go through again.

 

I'm only offering my personal experiences. I know plenty of others who feel exactly the opposite and with valid reasons. It's a very personal decision (as well as a financial one).

[laure]

PEX is essentially blood dialysis but only of the immunoglobulin (the clear plasma of the blood). The patient's blood is taken out of the body via a central PICC line, spun in a warmed centrifuge (to maintain body temp) and the plasma/immunoglobulin is removed and discarded. The red blood cells are then returned into the patient's body, along with albumin and proteins to replace the volume of immunoglobulin that's been removed. The thinking is that the auto-antibodies attacking self are removed (however, so are all other antibodies, including those that may be fighting current infection). The body still has B cells and will regenerate antibodies as needed. But my personal feeling is that if there's an active infection that's resulting in the creation of auto-antibodies, you're just going to regenerate the same stuff you've just removed unless the infection is first eradicated. Just my opinion.

 

IVIG is the opposite. Instead of removing antibodies, you're adding in tons of antibodies from donors. The thinking is that these healthy, normal antibodies will flood the body and convince the immune system to stop making it's own (which are defective and attack the self). One benefit is that a flood of antibodies may also help fight any current infection. However, on the flip side, this may trigger a pronounced herx. It also carries risks, however small, of introducing something from one of the donors. It was this element that always made me uncomfortable. However, as a practical matter, it may have been the severity of a herx that made it so rough for us. All I know is that it's not something my family would willingly go through again.

 

I'm only offering my personal experiences. I know plenty of others who feel exactly the opposite and with valid reasons. It's a very personal decision (as well as a financial one).

 

 

 

Thanks for that explanation LLM. Very different procedures, and sounds a little traumatic from the child's perspective. As crazy as our life is, my child is physically and mentally high-achieving. So as much as we want a solution, both procedures sound like a risk, more than we need to take right now. I would be interested to hear experiences from any others who had kids functioning at a pretty high level (not counting the 6 showers a day, hands constantly balled into fists, constant surveillance about who touches what, constant hand washing and ordering us to wash our hands, and inability to be touched by us, etc. etc.) We are pre-approved for IVIG. Our insurance would probably cover about 80%. Not sure about PEX expense or if/what our insurance would cover.

[philamom]

We had our appt. with Dr. J over the weekend and there was no mention of PEX. He said to continue with IVIG if it seems to be helping. My daughter is not dealing with contamination ocd at the moment, but a SEVERE fear of losing things which then leads to significant hoarding. She also puts feelings to all objects (stuffys of course, book marks, pen caps, exc). She's so afraid it wil be left in the world all alone and that she's to blame. She has constant nightmares of robbers breaking in to steal her stuff and nightmares of our house catching on fire, again losing her stuff. The thoughts bring her such anguish. She even cries at times when others mistreat their toys. Even Dr. J felt sadness for her, which was so touching. He reminded me that it is OCD and that she does not feel good about some of her actions regarding the feelings. I get so frustrated at times.

[ShaesMom]

LLM-I'm curious why IVIg was such a bad experience for your family. Do mind sharing either here or PM me?

 

Just to add another perspective for those who are considering it-My dd8 has been receiving IVIg every 4 weeks since 7/09. She started with the high dose recommended by Dr. K over two days and now receives a lower dose for the PIDD she was dx'd with. I understand her experience may be different than others because she has received the PIDD diagnosis but it was based on failed Pneumo Titers which a lot of PANDAS kiddos have.

 

For us-it has been nothing short of a miracle. Just last night she asked me if IVIg was coming up soon because her legs were hurting again (she crawled to bed) and she was feeling more fatigued. She actually looks forward to the treatment because she knows she will feel better afterwards. We do see a definite decline in the week prior to the next treatment and a major change in her mood, energy level, and behavior immediately following. With that said-she does experience side effects every month which start 36-48 hours afterwards. It usually lasts through Sunday and when she wakes up on Monday morning she is fine (IVIg is always given on Friday). But one day of not feeling well has never stopped her from looking forward to feeling better for three weeks.

 

I've often wondered if the monthly headache, low fever and nausea were caused because her body & the healthy Ig's were trying to fight some lingering infection rather than from the medicine itself. Now after learning more about Lyme I wonder if she isn't actually having a herx type reaction. We've messed with dosage, infusion rate, premeds, aftermeds, water intake and brands but we can't seem to completely stop the side effects. But we all agree that the benefits far out weigh the one day of not feeling well.

 

I should also add that she was extremely sick from the large two day dose back in '09.

Edited May 10, 2011 by ShaesMom

[JAG10]

I initially didn't want to hijack this thread, but something's been bothering me and maybe you guys have some ideas. In Pandas, it's all about inflammation, cytokines, keeping the immune system calm. In lyme, it's about herxing and detox. But you never find articles about how lyme differs in kids (ok, maybe a sentence or two), not much about neuro-lyme, very little about bartonella, and aside from one Cunningham article about RF and lyme, nothing about lyme-induced auto-immunity.

 

 

This has been nagging at me, too. I keep hearing from others here (or a comment by Dr. J's assitant) about the connection between OCD and Bartonella, but finding something more detailed, formal, official... has been close to impossible.

 

I also keep thinking there has to be a connection between Lyme/TBIs and strep. In Cure Unknown, there is a paragpraph that discussess how Dr. J was one of the first to treat Lyme as a bacterial infection (in the 70s??) because so many of his patients coming for Lyme treatment also had strep and when he treated the strep with abx, their Lyme symptoms improved.

 

The other thing I wonder about is what is happening with the brain. Is it inflammation due to antibodies attacking the brain as stated in PANDAS? Or is the Baronella infection actually in the brain somewhere wreaking havoc and inflammation has nothing to do with it???

 

Sorry if I'm an accomplice to hijacking....

 

 

Hi Kara,

 

One thing that has always affirmed the "inflammation" theory for me is the positive impact of ibuprofen and that my dd11 had the constantly dilated pupils once her symptoms became chronic. In researching dilated pupils, there are only a few things identified as causing this...and none of them are good. Specific medications and drug overdose can result in dilated pupils. And brain injury/inflammation can result in dilated pupils. Even though my dd experienced some improvements with abx only, she experienced significant improvement with ivig and the ivig has been the only treatment that has resulted in normal dilation of her eyes, usually 10-14 days after the infusion. It's so wonderful to see those beautiful, hazel eyes!

 

If your question is....are the antibodies attacking the brain causing inflammation or is it infection of various etiology causing the inflammation....that is another million dollar question. But my vote, FWIW, is inflammation is the factor.

 

Jill