OCD worse by the week...

[philamom]

Wendy, I am sorry you are going through this. You have always been so strong, like a super hero(or at least that is how i imagine you( big cape, a tick logo with an X over it). I am glad you feel comfortable to share your concerns.

 

I've been trying a little too, to carve out my existance(more likely mid-life crisis), as 2 years have GONE, and i don't know where they are.

 

Cyber hugs to you(()))

[LOL] Same picture I imagine. Hugs to you both--right here with ya!

[sf_mom]

With sleep my cape is on and I'm ready to battle the TBI!!! It will be interesting to see what our Dr. determines next Wednesday for him. Push through or pull back and rotate antibiotics. HERXS can be rough, last a long time.... he too does not show any signs of being physically ill. Anyway... Hopefully I didn't scare anyone away from treating. They really do emerge 'at some point' better. That has been our experience with older DS.... much, much, much better than he has ever been.

 

-Wendy

[MichaelTampa]

In case it can be of any help, the things I added when my babs herxing started from clindamycin and malarone was alpha lipoic acid (a few hours after the drugs), vitamin B, increased red root dosage from 1 to 2 capsules, and boneset tea in evening. The ALA is an antioxidant and possibly helps by destroying some of the drug, it is hard to know for sure on that one.

 

Best of luck getting through it!

Edited May 11, 2011 by MichaelTampa

[laure]

Hi everyone!

 

I am coming from the other side of the coin, a bit.

 

I have two daughters diagnosed with pandas a little over two years ago. They have been a pretty classic presentation. They were both physically healthy and neurotypical, with no issues prior to onset at ages 5 and 9. They presented with an overnight onset of debilitating ocd, initially at the same time as positive strep culture (with only very minimal illness symptoms). They respond very well to pandas treatments of abx, steroids and pex, and both had about 9 mos of total remission prior to the stuff we are dealing with now.

 

They do relapse with other triggers- illnesses, loosing a tooth.

 

We have been trying to battle pandas as aggressively as possible (only limited by finances and doctor access at times). But, with all of the talk of lyme on the forum, I had trouble sleeping, so we had them tested. Both girls were IGM positive, and IGG negative. IGM was about 4 positive bands, IGG nothing (maybe 41- have to relook). Our initial ID doc (works with Dr Fallon of Columbia, ordered Igenex, not your typical ID) felt the test and symptoms indicated exposure- but not chronic lyme, and to stay the course of pandas treatment. Our pandas docs, plus a few others I consulted agreed. Went to an llmd in MD, and he wanted to treat them for chronic lyme. I felt I wanted to try, and started one on augmentin, zith, tindamax combo, and the other on zith, rifampin (allergic to penicillin). We have seen NO change- NO better, NO worse, nothing.

 

The girls did get strep, which has caused an ocd flare up, we have used steroids which have significantly calmed things down. Right now I still have them on the lyme abx, but I am struggling with giving them SO many meds that don't seem to be helping. I DO NOT want to create another problem.

 

Both of them had pex, and it was a small miracle. Both went into the hospital debilitated by ocd, one came home 80% better, and was 100% within a month, and the other was 100% when she came home. It did not last, but we were able to keep them both at 90% for a year.

 

This is why it is SO important to know what we are dealing with, yet it is very hard to figure out. I struggle and worry every day. Yet- I feel I need to follow what works. I know I cannot forsake immune modulation for lyme treatment for my kids. But- they look like pandas, and have no brain fog or physical complaints.

 

Laure- have you done the Cunningham test? My kids antineurals were all elevated. I am thinking this alone is a case for PEX (is this right?). Maybe a redo of that test would help you figure out if it is autoimmunity- in which case pex (or maybe IVIG) would make sense. When my kids have responded to pex, or to iv steroids- it has been at times when a course of oral steroids did not cut it.

 

LLM- I have always been nervous about the possible herx, flare, turning back the pages of IVIG- my kids have been in really rough shape when considering it, and I couldn't imagine dealing with a "worse".

 

In my experience, just when I think I have a real handle on stuff, it changes. AND each time they flare, or change, I feel like it is a process of reinventing the wheel to get treatment.

 

It is just so hard; hard to watch them struggle, hard to feel totally confident on a course of treatment, hard to get the treatment they need, hard, hard, hard. Gggrrr- glad I have everyone here!!!!

 

It is such a

 

Dr. J did draw blood for the Cunningham test in late March. I don't think they have gotten to her sample yet. Not sure though, but I heard Cunningham was pretty backed up. I am afraid PEX would just reset her immunity, and then it would become reinfected with lyme in a matter of weeks...but I don't have a great understanding of it. Lyme is not a question mark in Dr. B or Dr. J's minds based on Igenex results.

[Wilma Jenks]

laure...how are things?

[Tamistwins]

Laure-

 

My girls are pandas- looking at lyme, but not feeling chronic lyme is our major issue- but frankly, who knows?

 

I have found, that my girls do not (mostly) get better without immunomodulation, meaning pex or steroids. They were in crisis (ocd) in January, and we did receive a "go ahead" on an oral steroid burst from two docs that treat lyme. It reversed our trend, so we could continue healing. I am afraid without it, we would still be in a horrible place.

 

Talk to your doc. I think steroids can "lower your resistance" to illness, but do not really "immunocompromise" you unless taken more long term. I am sure Dr Jones will have an opinion- be clear to him how debilitating the ocd is.

 

This is the biggest issue for me with the lyme and pandas thing, and why (for me) it is SO important to figure out the relationship, and what my kids, all of our kids, have. It is not just a name or label, but the whole premise on how to treat the child. Steroids are contraindicated by lyme docs, and a lifesaver for treating pandas.

 

I feel for you- for we suffer with ocd here. Both girls were so bad in January- and it makes them SO miserable. We were almost at 100% and they both got strep a few weeks ago, so now we have had a significant "bump" in ocd (and the anxiety, depression and combustibility) that go along with it.

 

Hang om there!

 

Dr. B put her on 6 days steroids two weeks ago, 30 mg. once a day. They did not budge her! Then he switched her abx the following week, thinking she might have developed resistance to the augmentin. Also still on zithromax, tindamax on weekends, bactrim. No clue here!!!

Hi Laure,

My twins b/g both present with typical pandas symptoms. My son started with more severe ocd than my daughter but looks like she's catching up to him. The ocd is unbearable. We have tried so many antibiotics which have helped with certain things but the ocd is still there and getting worse. My daughter tested positive for lyme so we also are patients of Dr. J. My son never tested positive but clinically being treated for bartonella. We were on Omnicef, tindamax, rifampin and azith. I saw no improvements whatsoever. Whenever I would email symptoms and complaints I was told it was herxing. We began treatment 2/24 and then May 2 I took my son to the e.r. because he looked so ill and had a very deep cough. i felt it was mycoplasma because aside from numerous strep infections he has a problem with mycoplasma. may 3rd I took both kids off of all the meds and they are on cipro for 10 days. The labwork in hospital showed he was positive for strep even after being on all those medications that Dr. J had him take. His aso was 200 on 5/2/11, we ran blood work again on May 10 and aso went down to 100. Cipro is a strong antibiotic and can also be used to treat bartonella. We did IVIG last wed so I am seeing a worsening of symptoms now. But I am so frustrated all these years all the meds, the IVIG and still in ######.

I wish I had the answers. ALl I can say is hang in there.

[laure]

Laure-

 

My girls are pandas- looking at lyme, but not feeling chronic lyme is our major issue- but frankly, who knows?

 

I have found, that my girls do not (mostly) get better without immunomodulation, meaning pex or steroids. They were in crisis (ocd) in January, and we did receive a "go ahead" on an oral steroid burst from two docs that treat lyme. It reversed our trend, so we could continue healing. I am afraid without it, we would still be in a horrible place.

 

Talk to your doc. I think steroids can "lower your resistance" to illness, but do not really "immunocompromise" you unless taken more long term. I am sure Dr Jones will have an opinion- be clear to him how debilitating the ocd is.

 

This is the biggest issue for me with the lyme and pandas thing, and why (for me) it is SO important to figure out the relationship, and what my kids, all of our kids, have. It is not just a name or label, but the whole premise on how to treat the child. Steroids are contraindicated by lyme docs, and a lifesaver for treating pandas.

 

I feel for you- for we suffer with ocd here. Both girls were so bad in January- and it makes them SO miserable. We were almost at 100% and they both got strep a few weeks ago, so now we have had a significant "bump" in ocd (and the anxiety, depression and combustibility) that go along with it.

 

Hang om there!

 

Dr. B put her on 6 days steroids two weeks ago, 30 mg. once a day. They did not budge her! Then he switched her abx the following week, thinking she might have developed resistance to the augmentin. Also still on zithromax, tindamax on weekends, bactrim. No clue here!!!

Hi Laure,

My twins b/g both present with typical pandas symptoms. My son started with more severe ocd than my daughter but looks like she's catching up to him. The ocd is unbearable. We have tried so many antibiotics which have helped with certain things but the ocd is still there and getting worse. My daughter tested positive for lyme so we also are patients of Dr. J. My son never tested positive but clinically being treated for bartonella. We were on Omnicef, tindamax, rifampin and azith. I saw no improvements whatsoever. Whenever I would email symptoms and complaints I was told it was herxing. We began treatment 2/24 and then May 2 I took my son to the e.r. because he looked so ill and had a very deep cough. i felt it was mycoplasma because aside from numerous strep infections he has a problem with mycoplasma. may 3rd I took both kids off of all the meds and they are on cipro for 10 days. The labwork in hospital showed he was positive for strep even after being on all those medications that Dr. J had him take. His aso was 200 on 5/2/11, we ran blood work again on May 10 and aso went down to 100. Cipro is a strong antibiotic and can also be used to treat bartonella. We did IVIG last wed so I am seeing a worsening of symptoms now. But I am so frustrated all these years all the meds, the IVIG and still in ######.

I wish I had the answers. ALl I can say is hang in there.

 

 

Wow, that is pretty scary! How many Ivigs have you done? Dr. J wants her vancomycin increased to 3 x a day, so have to call Dr. B on that since he prescribed it. That is also supposed to be a pretty aggressive abx. I spent awhile on the phone with Dr. J's assistant last night, and they want us to stay the course,(vanco, tindamax, bactrim, zith) consider PEX, and have a follow-up end of Juner (bumped it up a month). I really wanted to take a break from all abx, (started to go that route yesterday) but dh was afraid to do that with brother home from college with pink eye and a lot of red bumps on his throat. So we have to wait till he returns in a week...We see Dr. B May 31st, so I will be interested in what he has to say about this kid's immunity and how she has strep on all these abx - how does that happen???