OCD is so bad

[hawks]

Hello everyone I really need some help here. DS15 was diagnosed with PANDAS in Jan 2011 and the doc we were working with recommended IVIG and thought that we shouldn't wait to long because of his age. His first PANDAS exacerbation was in 6th grade in the fall we started noticing OCD symptoms out of the blue - during this time he had strep 2 times. Unfortunately when we asked our family doc about this he knew nothing about it and past it off as puberty and having a difficult time transitioning to 6th grade. At this time we were dealing with obsessions, hyperactivity and seperation anxiety. We thought at the time that made sense and took his advice to just hang tight. After getting through that rocky year of school things got much better for him. Fast forward to Fall 2010 and things go completely down high for him to make a long story short he was completely taken over by OCD contamination fears. Symptoms line up with most PANDAS but this time with the addition of compulsions. He has been unable to attend school since Dec 2010. Because of so many things that we had read on this forum about cross-over between lyme and PANDAS we wanted to rule that out although the PANDAS doc that we were working with said that he didn't see much correlation or cross-over. Our dogs have been treated for lyme. Prior to OCD ruling his life he was an avid outdoorsman and our dogs were both treated for lyme - so all the more reason to rule out lyme.

We found an LLMD within driving distance and had the testing done through IGENEX. He tested positive for the HHV6 coinfection. Here are the results of the IGENEX test...

 

Western Blot IgM: NEG; bands31 (IND), 41 (IND)

Western Blot IgG: NEG; bands39 (IND), 41(++), 58 (+)

 

The LLMD said that although it is read as a NEGATIVE, he felt the bands that are positive are significant, and we should continue antibotic treatment.

We had alread been on 250mg for AZITH for about 2 mos at that time we added Augmentin. He had also been on 12.5mg of Zoloft for a short period of time. About a month into to this we finally started to see some remarkable progress. So we decided to hold off on the IVIG hoping the antibotics would be enough. The progress lasted for a month or two and then we started going backwards. We added Flagyl and things seemed to have gotten worse maybe a herx. It made him feel very goofy and seemed like he had periods of mania. LLMD had us stop Flagyl for awhile and we recently started again slower and with a lower dose.

 

Because of stomach problems we are going to stop antibotics today for 10days as per the LLMD. DS has been having ongoing diahrea and stomach cramps despite probotics, Nystain, and glutatguione.

 

DS seems like he is regressing so bad though not as bad as the height of the exacerabation in DEC-FEB time frame. We are starting to think strongly about the HD IVIG that was recommended at the beginning before starting the HD antibotics. Is it just so hard to know what to do. DS is so frustrated and as a family it is so hard to know the difference between enabling and supporting him. We are going to a clinic if Florida in Sept to work on the OCD. Today he was so upset because a fly was on the ground and landed on him and was pestering him through his tutoring session. He had to take a shower because of the fly - anything from the ground is contaminated. He pretty much stays on his futon in his room playing video games or sometimes comes up to watch tv in his safe areas. We have tried so hard get him do other things. It is so difficult to know how to parent this.

 

I find myself wondering are we dealing with lyme for sure? PANDAS? both. Sometimes i even wonder if this is just OCD - but why the sudden onset around time of strep. Anyway I am rambling. I wonder if it is time to step up to the IVIG? Any thoughts? Thanks for listen - any advice would be appreciated. Thanks everyone & God Bless - Angie

[LNN]

I can certainly understand your anxiety. To have your family held hostage by OCD is a horrible experience. I think the team in Florida will be able to really help you view things in a new light. However, they will also realize that OCD for a Pitands kid is exceptionally hard.

 

There are some on the forum who do regular HD IVIG for their kids who started on the Pandas path and are now on the lyme path. However, in my own experience, when my son was in a bad place, being more aggressive with treatments has always backfired on us. It was more than his body could handle. It's very possible that the decline you're seeing is a herx. But when my son made progress and then backslid, we needed to dig deeper. Now sit down, because this will make your head spin. Because at this point in your journey, you finally got your head around Pandas and then had to make room for lyme and co-infections. Now I'm going to mention other things that you can look at and you'll think to yourself, OMG, these people are nuts. All they do all day is find more stuff to test, worry about, treat...do I really want to go there? But there are two kinds of sick people with lyme. Those who get sick and take meds and then get better and go on their merry way. And then there are those who just stay sick when the same meds maybe work at first and then stop working. The chronically ill.

 

It's gut wrenching when you reach a point in treatment where you realize your child might be in the second group. It's possible HD IVIG would help your son. But before you go down that road, especially if the cost will be out of pocket, you may want to run some lab work to paint a better picture. First, there's a genetic test called HLA DR. 25% of the population have the HLA DR4 gene that makes it very difficult for them to handle lyme. It's because of this group that the lyme vaccine in 2000 failed. Way too many people had an adverse, sometimes crippling, reaction to the vaccine because of their genetic makeup. This isn't "out there" medicine. You can find research on Pubmed and prestigious journals. Other HLA DR gene variants make it hard for people to handle mold toxins. So knowing your son's HLA DR genetic makeup can help determine how aggressive you can be in treatments.

 

The second thing that can keep someone chronically ill is mold. You can find a good introduction here: biotoxin pathway and here http://www.survivingmold.com/diagnosis/the-biotoxin-pathway

There are a half dozen families on the forum who have found mold illnesses and when they remediated the mold, their children made significantly more improvements. There are several markers you can measure in blood tests to let you know if mold might be a factor.

 

Another possibility is a condition known as KPU or pyroluria. http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf It's essentially an inefficient use of zinc and B6 with or without the added complication of heavy metals. A few of us are treating for this and seeing good improvements. (this is detected with a urine test)

 

And some are able to just slug through it and eventually see the light of day. It's an incredibly long journey for some and when you add in the pain of living with crippling OCD, it's brutal. There are many different experiences with HD IVIG here. No one can say if it would be helpful for your son. Only you can do a gut check and see if it makes sense as a next step. I only wanted to let you know that there are also other things you can test for beforehand that could guide you before you make the larger decision on IVIG. I'd ask your LLMD about these things and see what sort of feedback you get.

 

Best of luck with your decisions and with your trip to Florida. I hear nothing but good things about the program.

[lismom]

I think your on the right path. This path is not always straight. My son is 14 now and we have been at this for 3 years. It wasn't untill only four months ago did our path take a turn in the right direction. My son had been on aug, zith, ceftin, and while some slightly helped, for the most part he remained the same. We found the right abx cocktail that worked for him. He had dibilitating tics, fatigue, joint pain and brain fog. He has turned a corner after a grueling and sometimes unbearable 4 month herx. We have at least another year to go on this path.

My thought would be to discuss the other type of antibiotics and go slower with the cyst busting drugs. So many on here say slow and steady wins this race. Its so true. He will herx. It will likely get worse before better. The worst was hard to watch most days. I told myself if I don't see improvement in 6 months I'm doing PEX. I was keeping it my back pocket. Zithromax for us just sort of kept things at bay for a while when I thought my son had PANDAS. Augmentin did nothing and only gave him the runs. You may need to look into a combo that goes deeper and does a better job. Just a thought. Kathy